It's 2011......

The clock has just passed midnight here. 2010 is over and 2011 has begun.

Being Scottish, I've always felt a strong sense of obligation on New Year's Eve. It has to be best night ever, every year. We have to be drunk. Very drunk. We have to be surrounded by people. Lots of people.

I remember the last New Year's Eve that I spent alone. It was the big one. The Millennium. Year 2000 was about to become reality. I had grand plans. I was to be all kilted up and to welcome in the New Year with the girl I was seeing at the time. I had moved to England 4 years earlier and she was American but we were going traditional - spending the night at a beautiful Scottish castle.

Unfortunately, our plans never became reality. She was back in America with her family for the holidays and was involved in a serious car crash that resulted in brain damage. A few days after that, my grandmother had the first of her strokes. And so it was that I welcomed in the Millennium alone in my flat. Plenty of tears were shed and there was much sadness. The sounds of celebrations outside my window only heightened my sadness, my bitterness and my resentment of all that is optimistic about this time of year.

Now, 11 years later, I am spending another alone. It feels very different though. This is all down to choice. I am happy to be alone. In fact, the past two days of my life have been spent in a cocoon thanks to the wonder-drug that is Melatonin. A double-dose gave me the ability to sleep, almost constantly, for most of those two days. To withdraw from the world. To cease all communications. Even with myself. To quieten my hyper-active mind and just let the world turn without me. I must admit, I enjoyed it so much that I am almost loathe to return.

2010 has presented me with plenty of challenges. I got sick. I dropped out of University. I lost much of the ability to care for myself. I questioned most aspects of my self. My values. My friends. My future. And now, as I listen to the sound of fireworks and celebrations outside the window of the tiny room that has become my sick-bay and the scene of most of my days and nights, I am content. Happy to be able to avoid any sense of having to interact but knowing that it isn't rooted in sadness or depression. It is a temporary respite. A recharge. A calm and quiet that will precede my continuing battles - to get well and to help others who are battling the same illness.

Here's to 2011. I enter it a better man than I entered 2010 and a much happier man than I entered 2000. May all your futures be full of abundant hope, happiness and health.

I Have A Dream.... No, Really!

I have a dream.

This could either turn into something magnificent or die a slow death. Either way, I'm convinced it's worth trying to make it manifest.

Fairly recently, I started a Heart Rate Monitor group for those of us who saw the benefit of judging our ability levels based upon what our heart rate tells us. This has resulted in a Facebook group HERE and, more recently, a discussion forum HERE.

My aim with these groups was, and still is, to create a useful resource for the community. A place where information is centrally stored and updated to reflect the constantly changing scientific research in this area. This will continue. However, I am conscious that our heart rates cannot ever be the full picture. For some of us, they serve no useful purpose in relation to mental activity and, for others, they are considerably influenced by prescribed medications, supplements, food and water consumption etcetera.

In my view, there is merit in widening the focus. In taking a more holistic approach to our activity management/avoiding relapses/keeping our bodies as strong and healthy as they can be. This would mean incorporating an awareness of supplements/medication, diet, exercise, how different activities impact our overall health, what activities are particularly stressful for our bodies and how realistic we are about our levels of stamina.

Most of you with ME/CFS will readily be able to identify with the frustrations I experienced in the early days of my illness. Although I consider myself bright and relatively well versed in research, separating the useful information from the nonsense was a difficult task. I can only imagine how much more difficult that is for those who aren't able to scour the internet for information due to ill health or who are instantly discouraged by all the conflicting views on this illness.

This leads me to my dream. Thinking about what I would have valued most in those early days, when neither doctors nor neurologists were providing me with any information or comfort, I envisage a document that includes a collection of relevant scientific data, the collective wisdom of the trailblazing health professionals who are treating sufferers, the sage advice of long-term ME/CFS patients who have already walked the path. Most of this is already out there if you have the time to patiently pull it all together from various sources. When you are scared and sick though, how frustrating is it to have to do it from scratch?

I acknowledge that there are websites out there that already try to serve as a 'one-stop shop' for information and support. What I am suggesting is not at all a new idea. In my experience though, I cannot say I can think of a place that meets my needs in the way I think a regularly updated and streamlined resource could. What I have in mind is not a website but a PDF or similar. Something that people can dip in and out of as required, with searchable, indexed contents. Something that is comprehensive enough to satisfy those that like to voraciously research their new condition whilst remaining accessible to those that only want specific information or can only digest a small amount at a time.

What I am NOT suggesting is that I am going to create my own version of 'How to Cure ME/CFS'. If the greatest scientific and medical minds have not yet reached anywhere near a consensus on how to allow us to recover, what hope would I have? No, instead this would be more like a menu of options. It could contain the various approaches of the leading experts in the field and it could include the anecdotal opinions of the wider community. This would all be provided with the understanding that it offers only opinion/suggestions. It would not be a protocol and it would not preach any single approach.

I am fully aware this is, for the moment, blue-sky thinking. I am also very mindful of my own health limitations and that those involved would most likely have similar limitations. I really do not see that as a reason not to try though. I am already in awe of the talents of many people I have met within the ME/CFS community and I see no reason why that collective potential cannot be harnessed to produce something of lasting purpose and benefit.

Obviously, I cannot do this alone. If it is to achieve the high standards I envisage, it would be no small task. And so, rather than me writing about my feelings or my symptoms or my approach to improving my health, I have decided to write this post. Consider it a call to arms. Consider it an appeal to you all, healthy or ill. Consider it an amazing opportunity to make a real difference. To make this work, it will require the efforts of many people just like you. However little you think you can offer, I am certain we can all contribute. Whether it be a summary of what 'works' for you or a collection of research articles/website links you find invaluable or whether it be skills you have from your professional lives past or present, you can all help make it happen.

In closing, let me reassure you that I am already choosing to overcome the idea that it cannot be done. I would settle for glorious failure before defeatism any day. I do hope John Lennon was right, when he sang:

"You may say I'm a dreamer. But I'm not the only one."

The Future?

I've avoided updating the blog for the past while for a couple of reasons. One is that I haven't been having the best run of 'wellness' and I've been choosing to use my very limited energy on other things. Another reason is that I do not want to keep repeating myself with each post being a recycled version of a previous one.

This isn't always easy to achieve as so much of what I experience, think or feel now that I have a chronic illness is cyclical in nature. Here's a 'typical' week as an example of what I mean:

Monday - I'm going to change the world.

Tuesday - I can hardly change my underpants.

Wednesday - I have so much to be thankful for.

Thursday - This existence is shit.

Friday - I'm not as ill as I think. I need to give myself a push.

Saturday - I can't even make it to the bathroom.

Sunday - Another week has passed and I have achieved the square root of zero.

Hopefully that helps to paint a picture. Life is now a constantly cycling set of emotions that range from positive and thankful to what's the telephone number for Dignitas (that might not make any sense to non-European readers but Google is your friend). And so, although whatever I'm feeling/experiencing on any given day is real and worth acknowledging, I also am aware it is exceptionally transient.

Which brings me on to the main theme of this post and another area that is shifting constantly in my mind. The future.

Almost every area of my life is now up for re-negotiation. There are many ways in which the future might look for me, depending on my health. I could be relatively symptom-free next year, I could be worse (perish the thought) or I could be relatively unchanged. The main areas of anyone's life, in my view are: relationships, career, social life, sense of purpose. All of those areas are impacted by my health. There's a lot of tough thinking ahead of me.

One thing I am becoming more resigned to is that the change in career direction I had mapped out (to become a Social Worker) is unlikely to be appropriate now, regardless of whether I improve or not. Social work, especially in the UK, is a career that is often dominated by high levels of stress, low levels of support from the public/Government and crazily unrealistic targets and workloads. I was always aware of this and it didn't phase me. Now though, I know that my health will likely be unable to handle such stressors and I'd be back to being very ill within a couple of years of recovering.

Another consideration is that I am now fully engaged with M.E. - both in terms of how it is impacting me personally and the stories I hear from fellow sufferers. To be honest, I never gave M.E. a second thought until it hit me. I knew it had controversy attached to it and I even knew a woman who apparently had it. But, like so many of us whilst we are healthy, I shrugged my shoulders, said 'what a shame' and carried on with my life. So, now that I have this new perspective, I'm going to find it very difficult to treat any future recovery as an opportunity to turn my attention/skills/efforts to anything other than somehow supporting those who are in the middle of suffering, despair and hopelessness.

I'm arrogant enough to know that I have a good brain (perhaps less so than before I got M.E. as it has eaten away at some of the sharpness!) and that, whatever I do with my life in the future, I can have an impact. It would seem absurd for me to direct myself anywhere other than M.E. in the future. That has implications in terms of my career options, my earning potential and where I live/work. Everything changes and I may look back on this post in years to come and laugh at my naivety but, for now, I can't envisage using any future recovery to do any other type of work.

The other main factors I mentioned? Who knows? All I can know at the minute is that I am not the same person I was before I got ill and I will probably not possess my old values, concerns or priorities when I come out the other side of this.

Here's to the future my friends :)

Dark Nights of the Soul

I must confess, the main purpose of this post is to try to help me make sense of what I'm feeling right now (4am here!) and to process some stuff that seems to be stopping me from gracefully accepting my current circumstances. That said, I hope this post is helpful to others out there who go through similar dark nights where hope feels like it has gone and where the isolation and frustration overwhelms. Also, perhaps it will serve some purpose to those of you who live with, love or know someone with a chronic illness. An insight into that type of life.

I'm told I'm doing very well for someone so new to chronic illness. That I'm moving quickly through the various uncomfortable phases of having to adjust to a new life. To be honest though, I think exactly the opposite. The people I think are doing well are the ones who have managed to survive this existence for so long. It's simply beyond my comprehension how anyone can live this life long-term. I have massive respect for their perseverence and determination.

Tonight is one of those nights where I can find no peace within myself. I can't see past how isolated, lonely and sad I am. How I am living in what almost feels more like a tomb than a home now. I have people who love me and care for me and I am always so thankful for those people. But, even those who are closest to my heart cannot join me in this. Life goes on around me and it can't all stop just because I am no longer able to take part in it. The irony is, given the choice previously, choosing my own company would always be pretty high up the list of preferences. There was always plenty I could occupy my mind with and I never grew bored of myself. Now being alone has become default rather than choice, it kinda stinks.

Thinking about the future is very frightening. If I am sat in the same place, thinking the same thoughts, a year from now - I'm not sure it's a future I want. I don't yet know what has to change (and I acknowledge I am limited by many factors in terms of what I can change) but the status quo cannot be an option for me. How do I manage to keep a relationship together when our daily existences are already so far apart and when I now have so little to offer? How many visitors will I get in 2011? Probably not many. How old will my nephew be before I can be well enough to enjoy some time with him?

The only people I feel connected to right now are others with chronic illnesses. I'm so blessed to have 'met' some amazing people who are fighting similar battles but they are scattered all over the world and I cannot even make it to the end of my street. In a way, it's a further twist of the knife. There are people out there who I can feel accepted by and who are content to just sit with me in my pain but no amount of emails or virtual chats can equate to the physical presence of someone just 'being there'.

And so, for any readers out there who have a loved one in a similar position to me, my advice would be... just be with them. Give them your support, silently if need be, and your full attention. Make them feel less alone in the world. Forget the urge to distract yourself with TV or chores. Just experience their reality with them for a while. I guarantee it will mean the world to them.

This would usually be the point where I would read what I have written and either delete it or apologise for sounding so sorry for myself. I'm not going to do that this time though. Censoring my feelings to protect others cannot be maintained all the time. I'm hurting, i'm lonely, i'm angry, i'm resentful, i'm feeling sorry for myself, i'm hating the concept of fate and i'm afraid for the future. That is my truth tonight.

Obligations and Festivity

I've been heartened by how well received my honesty has been within this blog. I think I am about to find my honesty being rather less appreciated in this post though!

Firstly, let me deal with the first part of the title. Obligation.

One of the areas I've had to refine and improve since I got ill was my likelihood to try to do things out of obligation. This isn't to say that I wasn't already trying to remove obligations from my life before I got sick but it has recently become vital that I take it all a few steps further.

Now let's introduce festivity. I've always been seen as a bit of a grinch when it comes to pre-defined celebrations. Without wanting to roll around in self-pity or sound like I've just settled down on the sofa with Oprah, it's probably related to childhood. Life was scary and miserable most of the time but, because it was Christmas Day or my birthday, I suddenly had to 'be happy'. Naturally, I mostly failed at that ;) I hate that expectation being attached to how I feel or act.

I've also never been a huge believer in Christmas cards (i'm not religious) or Mother's Day etc. To me and my grinch personality, it seems obvious that we shouldn't need specific days to tell people they are important to us or that we are thinking about them. I therefore tend to avoid sending them and discourage others from sending them to me. Somehow, birthdays are slightly different for me as I've always felt it's important to acknowledge that individual day of significance. So, my rules are both grinchy and inconsistent.

It's that time of year when others are starting to ask for addresses to be exchanged and, although I have no problem with people knowing my address, I'm struggling a bit with the concept of exchanging cards with everyone. The obligatory "it's nearly December, better write out some cards" just doesn't sit right with me.

And thus my dilemma. I'm aware this makes me sound like a joyless curmudgeon who sees Scrooge as a role model. I'm also aware that people are being amazingly considerate and sweet in adding me to their lists. I honestly don't want to offend anyone or remove the pleasure they get from 'giving'. Maybe I should just swallow my principles and join in the customary practice but then I'll end up feeling restentful. I'm not sure I can think of a perfect solution to this personal dilemma.

So, now you all know I'm a grinch. In spite of that, I still seem to care enough to identify it as a potential problem. Now, dear readers, this is where you come in. I'm really keen to hear the views of others on this and any advice you wish to dispense will be gratefully received (even if I don't end up following it!). Because alienating everyone I know each November and then starting all over again in January doesn't seem like a smart strategy somehow, lol.

Sensitivity and Purpose

Sensitivity and Purpose. Strange title for a blog post, right? Sounds like a Jane Austen novel ;)

The reason for the strange title is that I want to address two different areas in this one post. Before I do though, I want to thank you all for the comments left after my previous post. It's not always easy sharing the innermost elements of ourselves and I was really touched and inspired to continue by the kind and thoughtful comments you left. Thank you.

So, sensitivity first. I was going to post a long description of the concept of 'highly sensitive' people but I don't think I can do any better than has already been said HERE so please read that first.

All done? Interesting, isn't it? Even though I've always been kinda proud of being sensitive, I've also always felt it was a bit of a burden verging on a character weakness. The truth of the matter is that I've been told more often that I'm "too sensitive" than it being made as a compliment. I now think that is just as dumb as all the times I was told as a child that I "think too much". Now I've read more on the subject of highly sensitive people though, I'm proud to be amongst that group. I should clarify though, this doesn't make me Ghandi. Not by a long shot. I still have moments of insensitivity, of being blunt to the point of unententionally hurting others, of saying the wrong thing at the wrong time, of misjudging the acceptability of my warped humour and of not thinking through my words or deeds.

Aside from those lapses though, being sensitive has lots of positives. Some people are very good in a crisis as they instantly see what practical steps should be taken. Those people are usually invaluable as a friend as they roll their sleeves up and clean up the mess. I'm not really like that. I always think more about the emotional side of a situation. How must the person feel? How can I reach out and show them I am aware of those emotions? How can I be of support? That sometimes leads to the male trait of trying to fix them even if they haven't asked for it but nobody is perfect, haha.

Another positive can be my heightened awareness of 'vibes'. I seem to able to sense unhappiness in others, sense when they need a kind word or an outlet to talk, sense when there is danger in the air etc. Being on alert all the time like this is tiring though.

I'm still working out all the finer details of this sensitivity lark but so far I'm leaning towards accepting and embracing this part of me. It's who I am, for better or worse.

Now, let's move onto purpose!

I'm not someone who is passive. If I do something, I do it almost obsessively and put my whole being into it. Otherwise I just don't bother. So, when I got ill and started to research what might be wrong with me, I knew I wanted to find a way of making a difference somehow. Of fighting for the cause. Especially as ME/CFS sufferers are treated so appallingly by society and the medical establishment (by and large anyway - not always).

I thought about turning my anger and frustration into doing advocacy work but it just isn't me. I have the utmost respect for all the warriors out there who are fighting hard for a fairer deal for ME/CFS patients but it isn't where my strengths lie. My search for 'purpose' therefore continued.

As I've mentioned previously, one of the most significant things to happen to me lately is to gain an appreciation of the benefits of pacing using a heart rate monitor. I am forever grateful to the lady who brought it to my attention and I now embrace the concept wholeheartedly. In the absence of finding a cure, I strongly believe this is the number one way to live alongside being ill. This led me to think about the diffference this knowledge could make to others who are having their activities cutailed by illness. If such a simple technique could free us from either pushing too hard and causing a worsening of conditions or being too afraid to do anything and wasting away it would be priceless.

And so, the 'Pacing with a Heart Rate Monitor' group was born. It's early days still and it will grow slowly but my aim is to create a central information point where the latest research and real-life experiences can be easily accessible.

Click here to join the group on Facebook

Having found a purpose is amazingly beneficial. In my own small way, I can offer some value to the 'community'. Along with providing all the information, I can provide support, encouragement and understanding to others who join the group. I'm very excited about the potential attached to it.

Of course, all this excitement and activity comes with a cost for me. I think I probably have been over-stimulated and over-active in setting this up and being so enthusiastic about it. This weekend my girlfriend's parents came to visit and I was really looking forward to seeing them as they are such amazingly kind and warm people. They have also had their own challenges recently and I wanted to let them know I supported them. Alas, I was too sick to get out of bed and spend time with them. My headaches have returned with a vengeance and my light sensitivity is back so I'm back to staying in the dark and wearing sunglasses indoors. If you read this, Judy and Rob, I'm really sorry I couldn't spend some time with you.

I'll find the balance though, I'm sure, between having a purpose, supporting others and listening to my own needs.

take care everyone :)

Barry

Gifts of Illness

For this post I want to focus on the unexpected gifts I have received as a result of becoming ill and having everything turned upside down. To clarify, I think it's important to continue to find things we can be grateful for in life but this is something quite different. What I refer to here are positive things that have happened purely as a result of dealing with being unwell.

I had a very traumatic childhood and lived amongst some quite horrific day-to-day events. I had to witness things that no child should be subjected to and I was forced to give up the normal care-free childhood and grow up too quickly. And yet, although I wouldn't in a million years want to repeat those experiences, I have always been aware that they brought their own unexpected gifts. I gained a level of maturity and sensitivity much earlier than my peers, I came to appreciate the immense importance of a home environment that is secure and full of love. I realised the damage alcohol abuse can cause and therefore greatly reduced my likelihood of ever having a drinking problem. And I developed a hatred of violence that made me someone who didn't see my fists as ways of resolving anything.

In the same way, getting sick recently has allowed me to receive positive insights that will also hopefully stay with me throughout my life. I have gained an appreciation of the simple pleasures that can lift my spirits. None of those things are related to how much money I have, what type of car I own or whether I have the latest gadgets or designer clothes. My cat wrapping her big bushy tail around me when I'm in pain or feeling down. The sound of raindrops on the window. Being able to walk across the room without being breathless. There are countless other examples but what links them all is that they are essentially free and often taken for granted.

This also extends to my body. The old truism "at least you have your health" really cannot be argued with. I know that now, although I never did before. Now that all those 'automatic' functions we all take for granted have gone haywire in my body I can finally appreciate what a wonderful instrument the human body truly is. For years it served me well, even if I taxed it with various toxins or unhealthy additions. Just think about it for a minute - our temperature, heart beat, breathing, energy supply, brain function, blood flow ... they all just 'work' ... until they don't. Never again will I be so dismissive of good health.

And then there are others in my life. I have always been very comfortable being in my own company, sometimes too much so, and I've been very cautious about allowing people into my world or offering my friendship. I've also always been a little too aware of how I might portray myself to others. Now, my dignity is hanging by a thread. Thankfully, I can still carry out all my 'personal care' needs but it's touch and go sometimes. And so, I am starting to discover the joy of surrounding myself with people who accept me for me. People who don't need me to impress or entertain them. This is also allowing me to develop more compassion for humanity. I have been quite hard and cynical over the years, probably as a result of what I learnt about how unreliable and selfish people could be when I was a child. Now I am beginning to appreciate the beauty in certain individuals much more and to give them, and myself, more of a break. The standards I've set for myself and those around me have always been far too high and now I can be much more forgiving.

The other side of that though is that I have an acceptance that there are people who have been in my life who will naturally drift out of it now I'm not able to partake in socialising etc. I was sad about that at first but now I'm accepting and calm about it. There will also be people who I come to realise are not helpful to my wellbeing now that I have so little energy to spare. Another gift of getting ill is that I no longer feel the need to try to work out and solve everyone's problems for them. I used to do that even if they never asked or wanted me to!

Finally, I have been given the gift of just being who I am. It's ironic that I worked on trying to uncover the real me for years without success and now that I've been struck down the real me has come to the fore naturally. I realise this may all sound rather 'new age' but I don't care. I'll end with a gift that all of us have but don't take advantage of ... the joy of doing and thinking nothing. Sometimes I have no choice but to just disconnect from any type of activity and remove all thoughts. Those periods of staring into space with a glazed expression and a slack jaw are wonderful - try it ;)

Hello Darkness, My Old Friend....

Another bout of struggling to accept my fate at present.

Although I still like the heart rate monitor concept that I discussed in my previous post, it has done a wickedly wonderful job of highlighting my current limitations. I've found that my heart rate goes above my threshold just by standing up and goes through the roof I dare to walk around. I knew I was struggling but a part of me probably thought I was being over-cautious and could start to do a bit more. Seems I actually need to do less.

I think I am effectively going to have to turn the upper floor of the house into a bedsit to limit the journeys I made up and down the stairs. I still refuse to give up on going down to the ground floor in the evenings to have dinner with my girlfriend and watch a movie or whatever. Isolating myself up here is beneficial in many ways but the thought of being trapped here all day and night is pretty scary. However, it does make sense that I bring into my current living area all the things I might need during the day as exhausting myself to fetch a ricecake from the kitchen hardly seems sensible! It also forces me to think some pretty distressing thoughts about the future. What if the stairs become too much altogether? Move to a bungalow? Get a stairlift? Hopefully it won't come to that. Hopefully.

I find that how I manage to cope with being ill is extremely variable. At times I am calm and accepting, other times I get in a panic and other times I get very down and lose some hope for the future. It's not pleasant for me but I'm also very conscious of how difficult it must be for my girlfriend. She is very susceptible to anxiety and our whole future has been marked with a huge question mark. On the surface I think she is coping but I do wonder how much she protects me from, by giving the impression of managing.

I'm aware of the energy I spend trying to balance my needs with hers but sometimes it's simply impossible to do so. I'm also struggling with how much to discuss the subject with her. For me, this is my whole life and I do need to vocalise what I'm feeling. However, I also want her to not be constantly bombarded with my challenges. Also, she has said she isn't really ready to join me in talking about it all at length as she is worried how she will cope. I understand that and I understand that working on auto-pilot gets her through the day-to-day stuff so it's a tricky balancing act between asking her to join me in my world of boring and constant illness and trying to paper over the subject to give her a break from it.

I'm in contact with some great people who have had to deal with chronic illness for a lot longer than I have and they tell me I am dealing with things well and that my moods going up and down is to be expected. That's good to hear but I'm pretty hard on myself and often find I'm rebuking myself for not managing better. I know I have to be kinder to myself throughout this situation and it's something I continue to work on.

Off to listen to Hank Williams now - yep, that's how much I have the blues, haha.

take care,

Barry

A Corner Turned

Quite a lot has happened since my last update. Well, in relative terms - my life is hardly swimming with activity these days!

I realised that I was still doing that 'headless chicken' thing of devouring everything I can find in terms of a possible cure. I was so keen to beat this illness that I lost sight of reality a little. I thought I'd come up with the perfect combination of supplements and be back to normal in no time. I guess it's understandable that I thought like that but it's not very helpful. So, I'm done with searching for now. I'm sticking with what I still think is a good range of supplements to support me whilst my body heals.

In a very timely manner, a lady on the Vimeo group I mentioned posted an intriguing video about working within our aerobic thresholds. As we try to 'push through' the fatigue and weakness to get things done, we call upon energy we don't have. That leads to episodic relapses that leave us feeling worse. It's why exercise can be downright dangerous for people with M.E. and why I get really angry when I hear people with the condition being told to 'roll up their sleeves' to overcome the symptoms. The symptoms are there for a reason; to protect us from organ/tissue damage.

So, the concept is that, by using a heart rate monitor that alerts us when we are reaching our aerobic threshold, we can avoid over-exertion and thus avoid relapses or periods of feeling a lot worse than we did. Conversely, it should result in me being able to do more. I'll learn what my limits are and what I can achieve without my heart rate getting too high. It won't be easy as my heart rate heads over 100 when I stand up but with patience and common sense it should free me from either being afraid to do anything or doing something that knocks me backwards.

I think I mentioned previously that I had joined an online community of people who are dealing with very similar challenges. That really has been the biggest boost I've had in ages. I decided that I wasn't going to join a local support group as, rightly or wrongly, I felt it might end up dragging me down further. It's so easy for me to be negative or feel sorry for myself nowadays and I was worried I'd get involved with a group where there was lots of whinging and not much in the way of proactivity. That's probably very unfair to all the local support groups out there but it was how I felt.

Anyway, I'm glad I took a bit of time to find somewhere online that I could get involved. It's strange but I already feel closer to some people I've interacted with in that place than I do to certain people that I've known in the flesh for many years. I guess that is partly because we have shared experiences and therefore understand each other and partly because most of those who were in my life previously have carried on with life and we've lost touch.

Another positive is that I have been awarded Disability Living Allowance. I felt strange about applying for this, partly because I don't really want to be tagged as disabled and partly because I always said I'd never claim benefits. However, I have to be realistic as I am now unable to do the smallest things. I completed the form honestly so I have nothing to hide or live up to. I'm spending a fortune on medications (you can get relatively little via NHS prescription) and various gadgets and amenities to be able to function in my home so some money coming in will definitely help with all that.

I've moved into a top-floor room now (house has 3 floors) and that has been a wise move. It removes me from all the activity that takes place on the ground floor and means I can choose when I'm able to take part in things rather than just always 'being there'. I'm doing a few things to make the room more comfortable and functional and I think it'll do me the world of good to have this quiet space as noise is actually painful to me now at times.

Sleep isn't so good unfortunately. Although I was a zombie at the beginning of my illness I did get loads and loads of sleep and that helped protect my body from damage. I think I still need 11 or 12 hours of sleep or complete non-activity each day but sleep isn't forthcoming. I have an appointment with my GP soon so that's top of my list to discuss with him.

I think that's enough for now.

Take care,

Barry

Shake Me & I Rattle

As promised, I'm finally getting around to setting out the pills and potions I currently take.

Unfortunately, the nature of the illness is such that there is no cure and all we are really doing with medications is symptom management. Furthermore, what works for one person seems not to for the next person. It's a very inexact science! With that in mind, I need to state for anyone reading who also has M.E. that trial and error is usually necessary. Also, because I have become ill fairly recently, I am still experimenting to see what works.

So, let's do a quick run-through:

Ascorbic Acid (soluble Vitamin C) -1000mg - This is how I try to start every day. With a glass of effervescent orange-flavoured Vit C. This is no hardship as I enjoy the taste and the fizzing sensation. The benefits of this are too long to list but most important for my particular needs are that Vitamin C is great at scavenging free-radicals and providing immune support. Bear in mind that we never absorb all of the Vitamin C we take in supplemented form. I think it's up to around 20% we absorb and the rest is urinated. All the more reason to also get Vitamin C from food sources.

BioCare Multivitamin - A word of warning on multivitamins. They aren't all the same. Some are really poorly balanced with too much of a certain element or not enough of another. I like the BioCare range as it seems to have the right balance.

Vitamin B3 (Niacinamide) 500mg - Multi-faceted benefits attached to this including blood sugar control, mitochondrial support and a calming effect.

Vitamin D 500ui - Best source is sunshine but being housebound puts paid to that option. Deficiency is very common in the UK and has been shown to be present in various diseases.

Flaxseed Oil 2000mg - We've all heard plenty of the benefits of Omega 3 oils. Whether it be brain food or joint care, Omega 3 can help. Personally, I avoid the fish oils as they are more prone to being loaded with metals (unless you spend a lot on ultra-pure capsules) and I don't like fishy burps much! Flaxseed oil suits me better.

Chromium 200ug - I had a scare with my blood sugar levels and started taking this to assist. My last test showed a decrease so I think it's having an impact.

Co-Enzyme Q10 100mg - Assists in mitochondria (and thus energy supply) and is a powerful anti-oxidant (those pesky free-radicals again). Also seems to provide some support for the gut and has anti-ageing properties - a wonderful drug! It's not a cheap option and be wary of the more budget brands as absorbtion might not be very good. I use Doctor's Best brand.

Milk Thistle 5600mg - When we take a lot of pills our livers have to work extra hard to detox. Milk thistle is supposedly a good help to your liver in this respect. It's also been heralded for helping digestion and reducing Irritable Bowel Syndrome.

L-Carnitine 1000mg - I must admit, I don't always remember to take these as I have run out of room in my pill dispenser! It's an amino acid most commonly found in red meat but few of us eat enough red meat to correct a deficiency. Like many of the other supplements I take, it has been shown to support mitochondrial function.

GABA 1000mg - Another that I don't always remember to take. It has been shown to raise levels of a neurotransmitter that brings about a more relaxed state and can help sleep. I have to say that I haven't seen any benefit from this so far and I probably wont buy more when my stock is depleted. Mind you, me and sleep are hardly friends and I'll be seeking out some dedicated sleep meds from my doctor in due course.

Magnesium Oil - My new favourite. As I've mentioned before, the benefits of magnesium are many. For me, I'm finding it is helping slightly with my muscle spasms and even seems to reduce the severity of my headaches a little. A good way to tell if you are deficient is to spray some onto your skin and see if you get a strange tingling sensation. Epsom Salts are good for bathtime too!

Finally, I try to use a plant sterol spread (Benecol in my case) to keep my cholestorol under control.

So that's my basic list of supplements at present. I am sure the list will change in due course as I will discontinue certain elements or introduce new ones. If anyone has any comments on what's included or suggestions for trying something new please get in touch!

Take care,

Barry

This and That

There is no central theme to this post. It's more of a hodge-podge collection of everything significant that has happened lately.

Some good news to begin. My fasting glucose levels were normal this time so it seems I am out of the woods, for the time being, with regard to diabetes. That's a relief as it would just have been one more health problem to manage!

I'm currently weighing up how best to manage the whole doctor-patient relationship with my GP. I think I'm still minded to keep control of my treatment plan but I am also acknowledging that I can be a little 'full-on' and hard-headed sometimes and no doctor likes a patient who tries to tell them their job! I've worked through the whole 300+ pages of the NHS NICE guidelines and now have a better idea of what I can and can't ask for. Realistically it is just going to be about symptom management rather than anything that will allow me to return to a normal life but I've already accepted that's how things are now.

One thing I'm wanting to ask him is whether he'd sanction Modafinil/Modalert on prescription. It seems to scare a lot of doctors as it can be equated with amphetamines (speed) but it works in a completely different way and doesn't seem to have the risks of raising heart rates or encouraging dependence. I think it has been used 'off-label' for M.E. patients but not widely. Anybody out there had any experiences of this drug?

Another decision i'm chewing over is whether to get a wheelchair. I have a feeling it would make a huge difference to my quality of life as I could get out and about again but I'm constrained by being too worried about the reactions of others. I know I should get over that and I'll try to - it's just that I don't have the energy or inclination to deal with other people's bullshit. There are still so many cases of people with disabled badges on their vehicles being abused for 'being perfectly fine' or people being told they are only using a wheelchair due to being unhealthy or lazy. I mean, I can walk - it's not that I've lost the ability ... but more than a few steps and my heart rate is racing, my muscles are going into spasm and I feel like I'm going to faint. A wheelchair would mean I could try to start doing normal stuff again and have the occasional day out or whatever. I think I will ask for an Occupational Therapist from the local council to come out and assess ways my everyday life could be made easier.

Oh, and I have a new favourite thing. Magnesium. I never realised how beneficial it could be for so many things. I'm now using a magnesium-oil spray on my skin and I have a big sack of Epsom Salts lined up for baths. I'm already seeing benefits in terms of headaches and muscle pain etc. There's apparently a great book called The Magnesium Miracle that gives a lot of detail of the various benefits of the mineral but I haven't got around to checking that out. All I know is that it seems to be having a positive impact so far.

Finally, I'm immensely relieved to have found a support group that I have such a good feeling about. It has been set up by the production company behind the "What about ME?" documentary and group members post their individual stories, and subsequent updates, in the form of videos. I've really struggled with the isolation this illness has caused and with the fact that, with the best will in the world, most people don't understand what life has become for me. Now I have a place where I feel understood and accepted and that's worth such a lot. I might even start posting video updates here instead of writing, haha.

The group can be found here: Vimeo

That's enough for now, I think. Thanks for listening to my ramblings - take care!

Barry

Confusion & Unpredictability

It's unfortunately been a while since I've been up to adding a new post. My intention was to start getting into some detail about how I was planning to treat my illness but my health has taken another downturn lately.

Before all this started, I had some problems with face and head pain in the form of TMJ (tempero-mandibular joint ... the joint that holds our bottom jaw to our skulls) inflammation and cluster headaches. Alas the cluster headaches seem to have returned. This isn't entirely surprising as, by their very definition, cluster headaches come in...well...clusters. You get them everyday for a while and then they go for a while. They are also known as 'suicide headaches' and, now that I've experienced them, I can vouch for that description not being too dramatic. I can completely understand why sufferers kill themselves, or maim themselves, to get rid of the constant and extreme pain. Best description I can give is a hot poker being stuck through the eye. Not nice. It actually creates a strong desire to gouge out whichever part of the head/face is currently painful and sufferers have been known to cut chunks out of themselves in an attempt to stop the pain. Thankfully I'm mostly too weak to go in search of sharp objects ;)

Anyway, all this means that my plans have had to change slightly. I didn't want to put any other prescribed medication into my body but I'm reluctantly going to have to start taking beta blockers again as they seem to be the thing that gives me some relief. Apparently something to do with constricting blood vessels and quietening down pain receptors. I got a bit spooked when the headaches started up again as they did so at the same time as my new supplement regime. So, I temporarily stopped taking anything else for a few days until I worked out it was the return of cluster headaches. Now I'm gradually working back up to full dosage of the supplements and I'll post details of what I'm taking in due course.

Which leads nicely onto what I want to talk about next. I thought I was being so very smart by reading up on every supplement and drug under the sun to see what the latest research findings were and what might benefit me. Unfortunately it hasn't quite worked out as planned though. The more I learn, the more confused I become. For example, imagine you never did any research ever and your doctor said to you: "take these pills, they will make you better" ... all nice and simple, right? Now imagine you decided to do a bit of research on those pills and found lots of documents pointing out they were dangerous and ineffective and then lots of other documents saying they were the best thing ever. Who to believe?

With a few exceptions, I can now make convincing arguments about why something is beneficial, pointless or potentially damaging. Very frustrating for someone like me who works with absolutes and needs black and white answers. However, I need to take something rather than just letting nature take its course so I have to weigh up all the conflicting evidence and bite the bullet. I will and I have. More on that in a future update.

Finally, my symptoms now include light sensitivity and noise sensitivity. The sound of my cat cleaning itself or the washing machine has actually become painful to me and the light is a problem too, even at low levels. All this means I am now having to use sunglasses and ear plugs indoors and will probably have to move into the spare room where I can avoid the everyday noises and activities of the household. I really don't want to cut myself off from what's going on in my own house but I think I'm going to have to take notice of these symptoms and act accordingly. Sorry I don't have anything more positive to report for now but at least the unpredictability of this illness keeps things interesting!

take care,

Barry

Simple Pleaures

It's around 8am here and I have been out of bed for an hour or more. I've dressed and I've taken all my pills and supplements etc. Big deal, right? Well, I've come to appreciate the simple little things that I always took for granted. Despite the fact that I will probably fall apart again before lunchtime, being able to get up early and do all the 'normal' morning stuff gives me an incredible boost and a glimpse again of how life used to be. More days like this please!

I'm surprised I have started the day so well, to be honest. Yesterday I really overdid it and had a couple of hours where my body showed its displeasure in no uncertain terms! The morning had involved a visit to the doctor for a chat about my latest blood tests and my referral to the M.E. clinic. Turns out I am in the 're-test' zone for diabetes so more blood tests are necessary. I'm trying to avoid thinking about the consequences of having diabetes on top of all the other stuff that is falling apart though and I'll cross that bridge if it comes. Stressing and worrying definitely makes my illness worse so I'm getting better at avoidance of anxious thoughts.

The visit to the doctor also allowed me to talk to him about how I'm going to manage my own treatment plan but that I'd really value consulting him once a month or so to summarise what I'm trying out and get his professional opinion on it all. I'm really lucky to have a GP that is honest with me and treats me like an intelligent human being. He was really positive about the monthly updates and hopes he can learn more about the lifecycle of the illness etc so it's all good.

I decided to try to stay out of bed once I got back home yesterday and I even pushed myself to fix a cup of tea and some sandwiches for lunch. I know that probably sounds like not much at all but my elevated heart rate and shaking muscles when I stand or sit have meant little chores like that have been mostly beyond me. Anyway, I then decided to push my luck further and sit and read after lunch. That was a bit silly really, now I know how much rest my body needs and how little it can achieve physically at the minute. Needless to say I had a really bad end to the afternoon with a migraine and a feeling that different parts of my body were shutting down. Sometimes it sounds dramatic when an M.E. sufferer says they feel like they are dying but there are times when that strange feeling does arise. It's like you can feel all your vital organs slowly giving up. Probably sounds bonkers but that's the best way I can explain it.

Thankfully, I had some dinner with my girlfriend and brightened up a little again. I managed to watch a bit of telly before falling asleep and grabbing a decent 7 hours or so rest. All in all, it was an interesting day in terms of studying how my body reacts to various things. I won't be as silly as to push myself quite as far today though. Plus I'm concious that the effects of over-exertion are often not felt for 48 or 72 hours so fingers crossed I don't crash and burn before the weekend!

Take care,

Barry

Treatment Plan - Part 1

In my last update I mentioned that I was now focusing upon managing my symptoms rather than seeking out some miracle cure. Today I am going to begin documenting the various things I will be using to help manage my illness.

There are two reasons why this is important now. Firstly, and most obviously, I have very little quality of life as a result of the symptoms I am currently 'enjoying'. If I can lessen the severity of those symptoms by as little as 20% I will significantly increase the range of activities I can take part in. Small things to most people but things that I've lost the ability to do for myself like fixing a meal or walking to the end of the street. Secondly, I need to be very mindful of the impact of my illness on my internal functioning. Statistically I am now likely to die of a heart attack at 58 (rather than 73 if I didn't have this illness) and I have a much higher likelihood of strokes, diabetes, organ failure and cancer. Cheery stuff huh?

So, it's important I do as much as I can to sway the odds of reaching a ripe old age in my favour. That is the long and short of my treatment plan. It is accepting I am unlikely to cure myself but it is making use of established clinical outcomes and robust scientific trials to give myself as many small advantages as I can. I mentioned previously about the dilemma of spending time, money and hope on treatments or just letting things take their course. I'm determined not to just give up and so the treatment option is the right one. However, I will apply a strict qualifying criteria to every potential treatment option. It has to be proven to have shown positive results and, just as importantly, it has to be free from excessive risks or side effects. Most prescribed medicines that attempt to treat many of my symptoms have other unwelcome impacts upon the way my body manages itself and those will not be considered by me.

For anyone following this who does not currently have the same illness as I do, I should also mention that 90% of what I end up doing or taking will apply just as much to general good health. Each part of the treatment plan plays a part in addressing basic imbalances within the body.

The first two elements I want to mention are both examples of what I previously considered to be champions of marketing rather than truly beneficial treatments. However, after a lot of reading and understanding the science behind them and how they change things within our bodies I am convinced both are vital.

Firstly, probiotics. I'm not going to cite individual studies as there are too many to mention but suffice to say that I am now satisfied that maintaining a healthy gut flora is definitely worth the effort and expense. We still don't fully understand all of the benefits of doing so but what is understood is impressive. A good probiotic can, amongst other things, regulate blood sugar levels (good for avoiding diabetes), boost our immune systems (good for fighting off viral infections - 80% of our immune strength is controlled via the gut), control yeast levels (good for breaking free of cravings for sugary processed foods etc) and can even help our waistlines! (sugars and starches are converted to short-chain fatty acids which are used for energy).

The emphasis has to be on a GOOD probiotic though. It is my belief that the heavily-marketed yoghurts are ineffective as the bacteria is unlikely to make it past our stomach acids. Similarly, the popular drinks are likely to be heavily processed and contain too many sugars and starches to have enough benefit. That leaves two choices - either grow your own bacteria and top it up with some sort of milk product (not as hard as it sounds, people have been making their own yoghurt for a long time and it's the same principle - a kefir starter kit can be bought for about 6 quid) or find a good probiotic in the form of gel tablets (they will make it past the stomach acids).

Secondly, I need to keep careful control of cholesterol. By that I mean keep levels of 'bad' cholesterol as low as possible and raise levels of 'good' cholesterol as much as I can. My heart is not working as efficiently as it should at the moment and is under more strain from minor exertion (standing or sitting in my case) so it's important I don't make matters worse. I don't want to mention brand names but I am introducing a well-known spread that is proven to improve cholesterol levels. I used to think this was another example of clever marketing as a means to sell expensive products but I have changed my mind. I have now read enough independent studies to suggest it not only works well but it works impressively quickly. In fact, more quickly than taking what is usually prescribed for high cholesterol levels (statins - they have lots of nasty side effects such as supressing some of our bodies' natural functions).

So, that's the first two parts of the treatment plan. Neither is very exotic or earth-shattering and both are widely available. The combined benefits are proven and significant enough to justify the cost and are especially important to someone like me whose natural functions are presently haywire. As I've said though, a GOOD probiotic and an effective plant-based cholesterol management food (such as a margarine) will also have huge positives for almost everyone.

Ok, that's long enough for now. Next time I'll start to go into some detail about some of the vitamins that are important and why most people waste their money on supplements!

Take care,

Barry

The Hard Truth

My previous post focused upon the dilemmas involved in managing an illness that is still so poorly understood. Moving on from that, I want to now address my Grand Plan of Action. Okay, so maybe the capitalisation is overdoing it ;)

The past week has contained some challenging days. Days where I've seriously wondered whether I have the desire and strength to persevere for the long haul. To clarify, I don't mean I am suicidal or depressed (although I naturally have periods of low mood, as anyone in this situation would). I mean from a more pragmatic point of view. If my life for the foreseeable future is to be led from a sofa/bed and I am unable to retain enough energy and concentration to do meaningful things that stimulate my mind then how much quality of life is there?

Part of my journey has been to learn as much as I can about my illness and how best to manage it. I now feel I have a reasonable grasp of what I'm up against and have digested the views of many different leading practitioners who have been working with M.E. patients for some time.

The first thing my knowledge has provided is a dose of realism. It's natural that people will tell me I'll get better soon etc. Even I still sometimes refer to myself as being temporarily unwell. But let's be realistic and use real data involving real people. The likelihood of me making a full recovery and being the person I was before I got ill is around 5%. Which of course means there is a 95% chance I won't ever be the old me again. Amongst that 95%, it is roughly split in half between the probability of having periods of remission and relapses (boom and bust in economic terms!) and the probability of getting progressively worse before I stabilise.

Now, I'm not being a doom and gloom merchant here and I'm not giving up all hope of a recovery. Rather, I am merely being realistic in gathering comprehensive data as opposed to anecdotal tales of individual outcomes. So, what about the stories of 'magical' recovery using techniques such as the Lightning Process or other 'mind over matter' approaches?

Undoubtedly the mind is a massively powerful tool and plays a huge part in how we feel physically. I completely accept that. However, if I do indeed have M.E. then there are various things going wrong within my body at a cellular level that positive thought or determination cannot possibly cure. I mentioned in my previous post that the landscape of understanding of M.E. is a rather unruly mess. To expand on that a little, I think I now have a better grasp of why M.E. and CFS should not be used on an interchanging basis.

Chronic fatigue is a symptom rather than a diagnosis. Yes, I have fatigue but it is only one element and probably not even the main one. I have had post-viral fatigue before and I can say with absolute certainty that this is way different. In fact, this all probably started with post-viral fatigue (I was sleeping lots and lots in the early period) but it has developed into something much wider. I'm still not totally convinced that M.E. (as defined by the World Health Organisation) is the correct term for whatever is wrong with me but I must accept that there is currently not an adequate clinical definition at this stage. It is my belief and hope that this will change in the future and that a better understanding of my condition will lead to a more appropriate clinical definition. It's not an easy task as every time I try to pin a description on it I am reminded that I am describing symptoms rather than disease itself.

I am therefore convinced that there needs to be a separation of those who have chronic fatigue syndrom/post-viral syndrome from those who have what we currently know as M.E. in order that clinical diagnostics are more readily definable. It might sound like I'm saying I am more ill than someone with post-viral fatigue syndrome or more deserving of research/sympathy/compassion but that isn't it at all. The waters are murky because a whole load of conditions are being lumped together under the M.E./CFS bracket and that makes the task of classifying, researching and treating the conditions almost impossible.

So, now that I've dipped my toes into these politically charged waters and risked the wrath of those in the community who disagree with me, what next?

Independent research is still the way forward, I feel. I've been able to build up a comprehensive understanding of what different treatment methods are being used in various specialist clinics (not NHS ones, i'll come to that in a minute!) and of the theories surrounding what is going on within my body. I am still of the view that nobody has yet uncovered the full picture and therefore I must approach each theory with a healthy dose of skepticism. However, impressive track records exist in various countries, including my own, in terms of managing similar conditions and I should not ignore that.

I mentioned the NHS. The current NICE guidelines worry me a lot and the more research I do the more I am convinced that I should retain control of my own treatment plan. Graded Exercise Therapy is a key tenet of those guidelines and is something I will be encouraged to partake in. There is overwhelming evidence that suggests to me this increases the likelihood of a severe worsening of the condition and I will be refusing that particular method of treatment.

So, now I've mentioned all that is wrong - what is right? Well, I will make use of this blog to cover in detail the treatments I am going to be relying on. In fact, my next post will begin that process in earnest. I say this with a full understanding that I am merely 'managing' my illness. There is no cure (yet!) but my understanding of what is going wrong within my body, and the clues afforded by various pioneering souls in the medical community, does allow me to make some pragmatic choices about how best to lessen symptoms. That in itself would have a major impact on my daily life. Imagine if I could have a shower without feeling like I'm going to pass out afterwards or walk to the bathroom without feeling like my heart is going to burst out of my chest or without breathing like a breathless old man. Yes indeed, managing symptoms and reducing their severity even a little will benefit me greatly.

Take care,

Barry

Rest or Treat?

The focus of this post is a dilemma I have been wrestling with for some time now.

To illustrate this dilemma I will begin by stating what I KNOW and what I DON'T KNOW.

I know that I am not well enough to live a 'normal' life. I know that a bunch of the everyday bodily functions we take for granted have become faulty within me. I know that I cannot seem to produce or restore energy for my body to use. That is pretty much all I know.

Then we get onto what I don't know. I don't know what exactly is wrong with me. I don't know how exactly to get better. I don't know what exactly is going on within my own body (at a micro level).

As this illustrates, I'm pretty much clueless still. Despite all my research and time spent considering different theories I am probably no closer to understanding my own lack of health. From the beginning I have wrestled with establishing the best approach to looking after myself and helping myself get better. I have no energy so I try to rest a lot. This seems sensible as surely my body is telling me that's what I need? On the other hand, I feel I should be doing something specific to help my recovery. The NHS is even more clueless than I am on this subject, it seems, so that's not an avenue of help for me. I research supplements and alternative treatment options and begin filling my body with various things that might help.

Which approach is correct? Rest and recuperate or actively treat the illness? This is where things get a little circular. Let's go back to something I DON'T KNOW..... I don't know exactly what is wrong with me.

This is the fundamental source of frustration for me and makes my recovery plan a bit like pissing in the wind. None of the explanations my medical advisors or the community were providing were satisfying my mind as they were vague and, in some cases, downright illogical.

For the purposes of having a label attached to my illness I say I have M.E. or Chronic Fatigue Syndrome. Dig deeper into these terms however and it's a mess of contradictions and poor logic. 'Experts' no longer seem to be able to explain the difference between M.E. and CFS and patients have come to use the terms on an interchanging basis. The World Health Organisation classify M.E. as a neurological condition. The neurologist I saw pretty much said there was nothing wrong with me. M.E. in pure terms is an inflammation of the brain stem and/or spinal cord as far as I can tell.

Do I have M.E.? Is my spinal cord and/or brain stem inflamed and causing neurological problems? You'd think that'd be an easy question to answer but it seems not.

Then we have Chronic Fatigue Syndrome. Again, none of the 'expert' explanations were satisfying my mind. There is much talk about the viral link now and this has never seemed right to me. I'll state again for the sake of clarity that I am glad it is getting positive media attention but it seems to be missing the point as far as I can see. Chronic fatigue is, in my eyes, a symptom and nothing more. Any viral infection we might have, be it XMRV or anything else, is another symptom. This does not explain the root cause. Of course people with messed up immune systems are going to be susceptible to catching a virus. Of course people with messed up bodily functions are going to suffer fatigue. There is surely a bigger picture here that we are missing.

So, with all this in mind, what do I do? My approach thus far has been to mix rest with supplementation. I'm sure none of the supplements I am taking are doing me any harm but are they helping? Who knows. What I do know is that I am spending a considerable amount of money on them without knowing if they will help. I'm effectively housebound and am earning very little so spending money is limited.

All of this frustration and guessing doesn't sit well with me. I am the sort of person who needs clarity and definite answers. A clear path to follow. By chance, that path is becoming a little clearer now my research has taken me in a different direction. This post is already long enough so my next update will focus on what I now know and how I am going to use that knowledge to formulate a treatment plan for myself.

Take care,

Barry

Decisions

I should begin my reassuring any readers that I'm not going to be wallowing in self-pity this time around. My previous update showed a very unattractive aspect of how I'm coping with being ill and I know it didn't paint me in a very good light. However, I wanted to acknowledge that there are days when I feel exceptionally sorry for myself and get angry with 'fate' for bestowing this on me. Writing about how unfair life is becomes a pointless task and it helps nobody to read it so I will be avoiding such posts in future.

Today I want to focus on some great work being done on M.E./CFS in the form of an upcoming documentary. Please visit this link for more information. Part of the pre-production work is asking those impacted by the illness to post their personal stories in the form of videos. Seeing an intelligent, determined woman be reduced to only being able to speak in a whisper and hearing a story of a child with the condition who wasn't believed and was taken away from his parents by social services then thrown in a swimming pool to force him to swim allows me to once again be thankful that I am not in the grasp of something much worse than my current condition. I will try to post more information on this documentary as progress continues.

Also, over the past week or so, I've made decisions about my future and taken action. I have now contacted my University to confirm I am unable to attend this year. And, I have sold my car. I was avoiding making both of these decisions as they are confirmation of my current loss of independence but it was unrealistic for me to hope against hope that I would make a miracle recovery and I actually feel inwardly calm now the decisions have been made.

I had a period recently where I was achieving sustained bursts of feeling mentally alert (although obviously not too alert as I managed to scald myself with hot tea and knock my laptop over, busting the hard drive!). I was having period of 4 or 5 hours at a time when my mind felt light and clear and I was able to concentrate on tasks. This was bliss and I mistakenly took it as a signal I was recovering after 4 months or so of illness. Needless to say, it was only a temporary thing and I am back to being zonked again and having long period of having to stare into space or sleep. It's disappointing to feel back at square one again but I think that is just the nature of the illness and I will in future just be grateful for those brief periods of lucidity.

Take care,

Barry

Infinite Sorrow

I probably shouldn't be writing on a day like today. Today I feel particularly cheesed off with what my life has become. However, I think it's important I capture all elements of my 'new life' and not just the times when I want to theorise around the philosophical or pontificate around the medical.

On days like today, where I'm exhausted but cannot sleep or gain no recuperation from what little sleep I achieve, I feel thoroughly sorry for myself and thoroughly angry with the world. I'm glad to say that I've mostly been able to move on from needing to point out how ill I am to everyone but days like today involve me wanting to shout it from the rooftops. Why can't someone help me? Why was I given such a cruel illness where the days and nights are long but I don't have the energy to fill them with anything worthwhile or satisfying? Self-pity is very unattractive but I'd be a liar if I said I didn't experience it from time to time.

My current situation is open-ended. I might make a full recovery, I might make a partial recovery or I might be like this for a long, long time. There is, seemingly, no cure. With most illnesses, the situation is somewhat different. There is either a recovery in sight or an end in sight. A terminal illness means a release is in the distance somewhere. An end to it all. Yes, self-pity also makes me feel like I've been dealt a tougher hand than a terminal cancer patient. I told you self-pity was unattractive.

I will regain a steadier mindset, I know. Maybe tomorrow or soon afterwards. I will be able to once again remind myself that there are plenty of people worse off than me and I will be stoic and accepting. Alas none of that is possible today. Today I just hate everything.

Take care,

Barry

Is A Cure In Sight?

Wow, I've just realised how long it has been since I've posted an update. A lot of the time the days just merge into each other so it's difficult to keep track of time properly. In fact, I often have to ask my girlfriend what day it is!

There is a decent chance that even those who don't actively follow M.E./Chronic Fatigue Syndrome stories will have heard about the recent medical studies done around XMRV and I want to focus today's update on the subject.

As this relates to a viral infection, it probably makes sense to begin with a very basic overview of a virus. A virus is something that reproduces inside the cells of a living host. Infected cells are then forced to reproduce thousands of identical copies of the virus.

The reason this is potentially relevant to Chronic Fatigue Syndrome (CFS) sufferers is that two studies have identified a large number of CFS patients having a particular viral infection. This infection is classed as a retrovirus due to the way it impacts our DNA and the proteins that envelope our cells. The most well-known example of a retrovirus is HIV (human immunodeficiency virus) but it's vital that I stress that HIV sits alongside many other types of retrovirii, including murine (mouse), avian (bird), bovine (cow), simian (monkey) and feline (cat) leukemia. What is NOT being suggested is that CFS directly relates to a sexually transmitted disease.

So, to make a long and rather complex story short, the reason all this gives hope to CFS sufferers is that it suggests a link between viral infection and CFS. Personally though, I am not convinced. Before explaining why, I should state that I have no medical qualification and that I am fully supportive of all research that aims to isolate the cause of CFS. Sufferers have for too long had to put up with their condition being regarded as psychological and the sooner we dispel that myth the better.

However, I'm yet to be convinced that XMRV or MLV or any other kind of virus is the answer. The fact that a high proportion of CFS sufferers have a virus seems to me to be more likely indicative of viral infection being a symptom rather than a cause. Let's take a brain tumour as an example. Severe and persistent headaches are present in many patients who are found to have a brain tumour. Can it therefore be deduced that headaches cause tumours? Of course not - the headache is a symptom rather than a cause. I see XMRV as the equivalent of the headache. CFS patients have poor immune systems and are prime targets for a host of infections such as flu etc. I think it's more likely to be the case that viral infection happens as a result of CFS rather than the other way around.

As I've said, I'm just an average joe who seems to have CFS and I am in no way medically or scientifically qualified. There is a huge chance I am completely wrong in my suppositions and I hope that I am wrong. If the cause of CFS can be ascertained and treated it will make a massive difference to my life and the lives of others and I shall watch this story unfold with great interest and hope.

My next update will hopefully focus on more personal matters such as my scan results and my immediate future in light of recent decisions I've had to make.

Take care,

Barry

A Little Bit of Everything

The past couple of days have seen me return to how I was a few months ago. I seem to be back to being hit by overwhelming bouts of tiredness that require me to immediately rest/sleep for long periods of time.

I've been here before so I know how it works. I get sudden collapses of energy and brain function and I go into 'shutdown mode'. I sleep for crazily long periods of time and wake up unrefreshed. I then try to do stuff and then, after an hour or two, get hit by another overwhelming wave of fatigue.

I find it interesting to observe my symptoms and how they evolve or regress over time. As well as trying to find the best way to live my life and retain some energy, I also have one eye on theories/remedies/case studies. This means I spend a fair bit of time reading up on what's being said out there in the world about what seems to be afflicting me. Today, I want to share a few articles that caught my attention recently and add my own comments where possible.

Firstly, dysautonomia.... more info here - I mentioned in a previous post that my personal theory (and, at this stage, theories are the best we can work with as there is no medical consensus) was that my hypothalamus was not doing what a hypothalamus should. This is a part of the 'old brain' (i.e. it was there even before our brains evolved into the amazing machines they now are) and regulates all the non-voluntary stuff like breathing, temperature, heart rate, blood pressure etc etc. In biological terms, homeostasis. It's still my own view that all those automated functions are awry within me but, until there are sophisticated tests done on a great number of living brains it can only be supposition.

Having a wimpy supply of energy and having to decide what to use it on is difficult to explain to others who haven't been in that position. We all get tired and modern life is full of stress so I completely understand when people equate it with tiredness. Of course, it goes way beyond that but I can't expect complete empathy from people who haven't been in that position. Although it's perhaps a little cheesy, a woman with Lupus used a bunch of spoons to explain this to a friend... see here

I've always been someone who enjoys my own company but I've noticed that noise sensitivity has become more of an issue for me now. If I'm focusing on what is making the noise it isn't really a problem so I can still listen to music or watch movies but if the noise is 'in the background' it drives me crazy. I tend to spend a lot of time wearing headphones even if I'm not playing anything through them as I find they dull out background noise. More on noise sensitivity here

Sleep. We all know how vital it is and we all probably don't get enough of it. Again, modern living brings with it other fun stuff like stress and sleep deprivation. Imagine though, never being refreshed by sleep. That's kinda the position I'm in and it's very frustrating. The desire and need to sleep still exist and I am able to sleep but it seems to serve little purpose as it doesn't refresh me. One of the theories around this seems to be that it indicates the person isn't entering the restorative cycles of sleep. It makes sense and I have noticed that doctor-prescribed sleeping pills have allowed me to sleep deeper and feel more refreshed afterwards. Unfortunately they stop working for me after I take them for a little while though. I found an article on sodium oxybate here intriguing as it follows the same general theory and mentions a drug that seems to address the problem. I have heard the side effects can be pretty unpleasant but I am definitely following this story with a lot of interest as restful sleep would be almost impossible to resist for me.

Recently, I've been interested in reading about the experiences of others in terms of how their loved ones deal with them being ill. There are some real horror stories out there and unfortunately it seems to be mostly women who have uncaring male husbands/partners. I am exceptionally lucky to have a wonderful girlfriend who is completely supportive but even I have times where I feel like I am a burden to her or that I am not being fully understood by her. I therefore cannot imagine how horrible it must be for those who are ill and whose partners are unsympathetic, mocking or disapproving. There's a decent article on the subject here

The articles I've posted are just a small sample of the 'community news' I try to keep up with. Alongside reading medical journals, it helps me stay informed. I'm not the sort of person who passively accepts that doctors always know best so I take the time to be as well informed as I possibly can be on the subjects that impact my health. I hope some of the information I've shared has been helpful to others or at least interesting to read :)

Take care,

Barry

What Next?

Again, it's a little while since I updated. This time it wasn't just down to feeling crappy, I'm glad to say. I actually had a couple of 'good' days and it was great to be alert and well enough to spend them just chilling out with my girlfriend. She had taken the day off work on Friday to take me for my MRI so we were able to have a pretty relaxing weekend after that, watching movies etc. Of course, I also managed to fit in some footy matches, haha. Unfortunately I'm back to feeling bad again now but I'm grateful for those few days of having a little bit of energy and of my mind being alive again.

The MRI results can apparently take 2 or 3 weeks to be available. Seems an awful long time but I'm assuming they will contact me quicker if there is a tumour the size of a cricket ball in my head! I'm expecting everything to be fine though. Even if I've got something completely unrelated to Chronic Fatigue Syndrome/M.E. I very much doubt I have MS or a tumour or anything that will show abnormalities on an MRI scan. The ECG I had on Friday was fine and I was confident it would be. Although my heart-rate is worryingly elevated when I'm walking around, I have had my heart checked a great many times due to developing a heart murmur after childhood meningitis (healthy sort, aren't I?).

Another positive I noticed over the weekend was in my breathing and capacity to stay upright. On the Friday, the short walk from the hospital car park to the relevant department was accompanied by me breathing very heavily. Pretty much like you'd expect an 80 year old to be. My girlfriend said I sounded like a dirty phone call. On the Sunday, the same walk from the same car park was less effort and my breathing was much less of a problem. Again, I'm back to finding the walk up to the bathroom a struggle but those couple of days where breathing was easier were very much appreciated.

One of the key changes I'm trying to implement, hopefully with a degree of success is already, is to accept my limitations and also accept I am very likely battling something that will not be cured by any miracle pill. Although this sounds like resigning myself to being unwell (and the positive thinking brigade sure do hate that!) it actually makes my life more positive in many ways. Rather than researching like crazy every potential cure I can find, I am accepting of being ill and am trying to manage the symptoms and my new lifestyle as best I can. So, whether it be taking a year away from University or admitting that a weekend away with my girlfriend at a riding event is too much for me, accepting the realistic truth allows me to make life easier on myself and not get upset about how life has changed.

This also includes an acceptance of the fact that I need to care for my body as best I can. So, whether it be removing processed foods and artificial ingredients from my diet, looking into a gluten-free lifestyle or supplementing my body with vitamins and minerals, all of these practical changes have the possibility of easing my symptoms somewhat. If this doesn't turn out to be a temporary illness I need to learn to live with it and to give my body every help I can in not falling apart. I stopped comfort-eating last week and that has shown instant results as I lost 3lb. I am by no means starving myself or eating a wholly virtuous diet but stopping myself from grieving with the use of junk food has definitely helped.

So, that's the immediate future for me. Be realistic, look after my body, stop feeling sorry for myself, avoid finding comfort in food.

I also want to post a round-up of some interesting articles I have read lately but this post has already become rather long so I will add a new one later.

Take care,

Barry

How Did We Get Here?

I haven't posted for a while as I haven't had the energy to achieve much of anything lately. In the beginning, I could almost predict whether I was going to have a bad day or not based upon what I had been doing the day before. That pattern doesn't seem to hold true anymore as I'm having bad days for no apparent reason now. This leads me on to the subject of this post. I want to try and document how things have progressed.

The caveat is that my sense of time has become exceptionally unreliable. I could be guilty of thinking that some event from a month ago happened six months ago or vice versa. With that in mind, I'll try to vaguely set out the sequence of events that led to this point.

One of the frustrating elements for me is not really knowing with any certainty what is wrong with me or how I 'caught' this illness. I remember saying to my girlfriend a while back, before I had any sense of anything being seriously wrong, that I felt like I had post-viral fatigue (we had both had 'bugs' that involved a sore throat etc but she recovered from it whereas I was left feeling drained). This was sometime during my first semester at Uni as I remember having a few days where I had to stay home.

After that, my Uni timetable changed (from around January this year) and I had a full day of lectures on a Thursday (2 x 3hrs) and a Friday morning lecture. I was missing lots of Friday lectures as I simply couldn't get out of bed. I distinctly remember saying to some fellow students that "this new timetable is killing me" and I made the obligatory jokes about my age catching up with me etc. 6 hours of lectures in one day is no walk in the park but, at the same time, I had been used to mental strain in previous jobs and it should have been manageable.

So, it's straightforward, right? I caught some kind of virus and never properly recovered from it. Well, apparently not. Rewind a year or so and I had a very strange period of health problems that resulted in me being diagnosed with TMJ syndrome ( info here ) and cluster headaches ( info here ). Both were very unpleasant but largely disappeared as mysteriously as they arrived. I still get problems with my jaw from time to time but nothing like as bad as it was. As for the headaches, they pretty much don't exist anymore. Without getting too deeply into this subject, I should probably mention that both are categorised as myofascial pain ( info here ).

And this is where it gets a bit strange. As part of my ongoing research I was watching a presentation by an eminent American doctor on the subject of Chronic Fatigue Syndrome and Fibromyalgia. He said that, very often, patients report to their doctors significant myofascial pain a year or two before having other symptoms. He also said that those initial problems resolve themselves and result in patients not visiting their doctor for a while, until the other problems begin.

The medical reasoning behind all this is beyond my comprehension but it strangely suggests that my route was a lot more textbook than I ever imagined. It just seemed to me that I had had an unlucky run of various periods of poor health but maybe they were all linked after all? Unfortunately the medical profession isn't in a position to provide any satisfactory explanation for this sequence, that I can find anyway.

When I first started having serious problems with fatigue I was approaching deadlines for the submission of my coursework and was gearing up for end of year exams. So this would probably be around April or May. Initially, it was a simple case of having to sleep lots. I would get a 'warning' in the form of a constantly twitching right eye and my arms would start to feel really heavy and my balance would go haywire. At that point, I simply HAD to sleep.

Things have progressed since then and I no longer sleep so much. I probably have less energy now and have to rest more but not all of that rest involves sleep. It is very often just laying staring into space or laying with my eyes closed. I don't really get the muscle twitches anymore either. Instead, I get unbearably restless legs. Anyone who has had this will instantly nod in recognition. It's very annoying and uncomfortable but hard to explain to others. It's kinda like having a constant need to shake your legs and/or tense your leg muscles to relieve discomfort. Sometimes it lasts for hours and sometimes it is a much shorter thing. Either way, it seems to my body's new form of twitching and tells me that I need to sleep.

I mentioned in a previous post about how things were for me in terms of symptoms so I won't go over all that again but it's interesting to observe how symptoms have changed over time. A lot of the initial problems I had simply don't apply anymore but they have been replaced by others. I guess the most worrying of which is the lack of mental clarity at times. Although I try not to focus too much on it, it scares me silly that I might lose my ability to concentrate and think clearly. Sometimes my girlfriend says something to me and it's like a collection of random letters. It means nothing to me. Thankfully, this isn't the norm and happens infrequently but each time it happens I worry it will become more frequent.

My Uni degree was supposed to involve going on placement from September but I've had to admit to myself that there isn't a hope of me being fit enough to go ahead with it. In a way, deciding to postpone my degree for a year has brought out the worst emotions for me as it is me admitting that I really am sick and cannot progress my plans. There was a part of me that kept thinking I'd recover in time for the new term and that this was all just a little blip. On the other hand, making the decision takes a lot of uncertainty away for me and that's good as any kind of stress or decision making seems to exhaust me even more.

So, there we are. A vague but hopefully understandable history of how things have progressed. Now it's a case of me accepting that all my plans must radically change (or at least be delayed) and adjusting myself to the current lifestyle I have. Two tasks I must set myself are stopping comfort eating (because I am obviously unlikely to burn many calories having to be laid out all the time) and finding something meaningful to do. I hate not having a purpose and, whilst I need to be realistic about what I can achieve at present, I want to feel as if I am still doing worthwhile things. More on these tasks later!

Take care,

Barry

What's The Problem With You?

When I'm asked what exactly is wrong with me (in terms of symptoms rather than a label) it isn't easy to respond.  On the one hand, I don't want to sound like a whinger who is providing a laundry list of symptoms but, on the other, I don't want to have what I'm experiencing being trivialised or misinterpreted.  So, I'm hoping that this post will go some way towards providing a much more considered and accurate overview than when I'm put on the spot.

A major element is fatigue.  It is difficult to encapsulate what that means as common usage of the word relates to 'feeling tired' and this is way beyond that.  Although I still haven't exhausted all the tests the medical profession want to do on me before offering a diagnosis, it is looking likely that Chronic Fatigue Syndrome will be the outcome.  Initially, I objected to the term as it suggests 'being very tired' but, now I've thought about it some more, it actually does a pretty good job of describing how things are.  Chronic means long-term and constant and fatigue means lacking in energy.  Put simply, my body and mind are almost constantly without energy.

What this means in practical terms is that my body is unable to produce enough energy for everyday life.  I will go into all the medical elements in another post, and also detail how my illness escalated, but for now I just want to focus on how I am at present.  Not being able to top up my energy reserves has consequences for pretty much every part of being alive.  Sleep doesn't refresh me and laying staring at the wall doesn't refresh me (although both activities do provide benefit in the shape of not sapping any more energy).  Any exercise or mild exertion leaves me wiped out.  This includes humdrum little stuff like walking to the bathroom or having a shower etc.  

Worse than the physical elements though is the mental fatigue.  Rightly or wrongly, I've always placed a great deal of my self-esteem on my intelligence and I now find myself stumbling over words, being stressed out by questions and becoming wiped out by the simplest of mental exertion.  My memory has become unreliable and I sometimes find it difficult to differentiate between something that has actually happened and something that I dreamed about.

It seems that a lot of the problems come about because of my hypothalamus.  This is a part of the brain located just above the stem and it controls the automatic elements of our nervous system.  So, things like metabolism, body temperature, heart rate, sleep cycles etc.  All of these 'automated' functions seem to be haywire for me now.  For example, I can't cool down and my heart rate becomes worringly fast when I stand up and it feels like it will burst out of my chest.

So, that's basically what is going on for me right now.  I'll be talking about the research I do to find potential 'cures' or at least making things less problematic in future posts and I'll also deal with the impact on others.  For now though, I hope this overview has been informative.

Take care,

Barry