A Year of Illness

*warning - extreme honesty in this post, including exploration of suicide etc - do not read if easily offended/upset by the subject*

I've put off writing this post for so long.

Last month saw me reach the depressing milestone of being ill for 1 year. Now, before I go on, I should state that I know people who have been ill for 30+ years and I know people who have been ill since childhood and have never been able to take part in life much at all. In no way do I compare my situation to theirs. I'm new to all this in relative terms and I luckily still have pretty good cognitive functions and have memories of good times to keep me company in the endless days of nothingness.

However, I cannot ignore the fact that 1 year of illness feels very different to 11 months. Even if the reality is not much different. I guess it's kinda like the psychology of how an item is priced at 9,99 rather than 10.00. I always thought this would be temporary. Sure, I knew there was a possibility that I'd be sick for a long time but I don't think I really had that mindset. I was going to do everything I could to get better and then get back on with my degree and my future. I was going to go back to having holidays and spending time with my precious nephew and all the stuff I thought were just temporarily on hold. Now, a year later, it all feels like a distant life led by someone who isn't even me.

And it hurts. It hurts so fucking much. On days where I'm clear-headed and aware, I have philosophical debates with myself about suicide. Nobody knows what the future holds (which is just as well, really!) and I might be well again one day soon. I might be relatively functional again in the near future even if I don't recover. Or, I might be like this forever. So, I choose to retain control over this part of my life. The part about when and how my life ends. It's a controversial subject and I respect that but this is MY life and it will be MY choice.

I have explored two options. One being the Dignitas route and one being the 'do it yourself' helium method as used in the early days of Dr Kevorkian's work. Talking about this subject openly is impossible without having to soothe or reassure others who care about you, of course. So, I should clarify a few things. This is calm, rational and pragmatic and is based upon the possibility of me reaching my limit AT SOME POINT in the future. This isn't something I'm planning for next week. Also, this isn't something I'd even consider when I'm at my lowest. People can believe me or not but this isn't depression talking. I promise all those who might worry about me discussing this that I will not be doing anything drastic or rushed. If it reaches the point where enough is enough, it will be planned and everything will be put in order. But I retain my right to decide.

To any of my non-ill friends who still read what I write, I'm keen to know why you no longer have anything to say to me. Did I stop being fun when I got ill? Do you not believe i'm really ill? Are you bored of me talking about illness? Is it easier to avoid the whole subject and just ignore it/me? I doubt I'll get a response to this but I'm curious. Because I feel like I don't fucking exist anymore.

And so, what was originally going to be a reflective piece about the year of illness and all my learnings has turned into a rather different beast. I make no apologies for allowing my uncensored anger and despair to have a voice today but I appreciate anyone who has the love, curiosity or fortitude to 'listen'.

This is Now

I replied to a message on Facebook and thought it might be useful to put most of that reply 'out there' for anyone who is interested to read as I know my absence from the online world has worried some people.

I think, coming up to the first anniversary of having to lead such a restricted life, I'm finally experiencing the grief of the situation. I think I'm finally allowing myself to be sad, angry and despondent about what my life has become.

That perhaps sounds a little glum but I think it's a stage of the process I missed out originally and it has to be experienced. Does that make sense?

I threw myself into research, into the chronically ill communities, into establishing a strict regime for myself. Everyone remarked how well I was coping and how 'smart' I was at picking up the best approach so quickly. Perhaps that is so but I failed in giving myself time to just reflect and accept and pout and rage. It was all based on logic for me, never emotion.

It's hard to explain to people but I think this is healthy (although it can be mistaken for wallowing or depression). I don't currently have the capacity for any research, community work or the suffering of the world and its population because, temporarily, I am consumed with my own suffering and it's all I can handle.

I have no doubt that I'll be back when the time is right. That I'll be back to being a hive of activity and aiming to support those who are in darkness via my research, my little projects or simply my friendship and compassion. I don't yet know when that time will come but it will come, I'm sure.

So, for now, I don't take in the news from around the world. I'm aware of things (as it's unavoidable) and my heart aches for the suffering caused by what seems like a torrent of natural disasters lately. It also aches for those who are caught in the trap of chronic illness and those who are still having to fight for justice, acceptance and being treated with decency.

As for getting better, my pragmatic approach has mainly been to stop myself getting worse. To avoid doing anything that will cause damage that is more difficult to repair once we understand more about our illnesses. So, I take my billions of supplements and rest, rest, rest. I do not push. I think the 'holding pattern' analogy is completely apt and it's probably the best we have right now.

To those who extend their love and care towards me through messages, pokes or simply thoughts, please know I do appreciate them and I am aware of them. I would hate for my silence to be confused with apathy.

Take care everyone. See you all soon.

Licking The Wounds

Sometimes it's necessary to retreat. To lick our wounds and admit we are fragile.

Lately, I have had to do just that. I had a birthday at the beginning of the month and have gone downhill markedly since then. I am confined to bed much more than I was previously (and even previously it was a lot!), I am unable to take care of my daily 'maintenance' tasks such as washing etc. I haven't had the strength to write to many of those who were kind enough to send birthday gifts and cards. I haven't had the strength to go back to see my doctor or to have the remaining blood tests done. I haven't even had the strength to have a telephone conversation with my own mother for the past three weeks.

I have had to abandon thinking about anyone other than myself. I haven't been able to do any work on the projects I was hoping would benefit the M.E. community and I haven't been able to support fellow sufferers in the various groups I am a member of. I haven't had the strength to take my pills some days.

All of this isn't said to gain any pity. I think there is a larger point I want to make. Actually, there are two, maybe even three!

Firstly, the personal aspect. A lot of my sense of self worth has always been dependent on my output. On what I achieve and on what I can provide others with. I am largely a rescuer by nature - trying to intercept and fix problems. The past few weeks have taught me how damaging that is to my health. I literally have the energy supply of someone who has congestive heart failure and yet I'm beating myself up for not being more supportive of others. That can't be healthy, if you excuse the pun.

Which takes me onto the second, more general, point. For all of you reading this - whether sick or healthy - do you also need to consider whether you are looking after yourself enough? I'm guessing the answer is "yes" for most of you. Please give it some thought as health is so very valuable, I realise that now. And, even if you are sick, the current level of health you have, however low, is also to be cherished and protected. Don't let well-meaning personality traits take that health away.

And finally, the PACE trials that have managed to generate so much worldwide publicity. Why is it that the mainsteam media are able to ignore most of the scandal and the meaningful biomedical research on the subject of M.E. but are so willing to swallow the dishonesty provided by a bunch of UK psychiatrists and a study that any fool can pick apart with ease? I must admit, I lifted my head off the pillow on the day the news hit, looked around me with despair at how widely it was being reported, wrote a grouchy post on Facebook and went back to sleep. So depressing. My guess is that the only way to counter this is to win the PR war. For that is what this is, in my view. The truth has become irrelevant. Most of the world take, without question, what they hear in the mainstream media as gospel. Only by accessing that powerful influencer of the masses will we be able to fight back.

Illness and Politics

My last update delved into politics. It was a move away from my usual blogging topics.

This update is asking for less politics. Especially in relation to the millions of us who are ill and caught up in political storms.

I am utterly pissed off with the politics and sniping that accompanies my illness. Yesterday, the Medical Research Council (an independent UK body that decides which research proposals will receive Government funding) made the almost unheard of decision to ring-fence £1.5m for the biomedical research priorities that the working party had identified. Note - biomedical... not Cognitive Behavioural Therapy or Graded Exercise Therapy!

The announcement was met with, on the most part, scorn by the 'community'. £1.5m isn't nearly enough - this is an empty token gesture - blah blah. Now, I know the sum involved isn't huge. But for fuck sake people, it's an almost unique scenario. Never before have I heard of the MRC giving such special treatment to specific research proposals. Change has to start somewhere and isn't always massive initially.

Then we have the two camps still bickering about whether XMRV is THE key or whether it's a load of bunkum and the fight should all be about separating M.E. from CFS. For ordinary idiots like me, I read one side of the argument and decide it makes sense. Then I read the opposing side and change my mind.

I'm ill. All I can know for sure is that I'm ill. I want to be made better. I want to be cured. In the absence of that, I want to exist in as positive an environment as possible and to provide support free from politics for others who are ill.

Why couldn't I have got a disease that wasn't so bloody political?

The Power of Being Heard

Here in the UK, our expectations of treatment for ME/CFS are somewhat lower than some other countries. We are still routinely offered Cognitive Behavioural Therapy and/or Graded Exercise Therapy with little attention paid to physical symptoms. This, of course, angers me and the more I hear of the injustices served out to fellow sufferers the more angry I get.

Today I reflected on that sense of anger almost making me give up. I keep very up to date with all the advocacy groups and, whilst I'd never recommend burying your head in the sand and ignoring all that is wrong out there, I do wonder whether I need to spend a little less time focusing on what is wrong and more time focusing on what can be turned into positives. This update will address two areas linked to the theme.

Firstly, I visited my GP today (primary care physician, I guess they'd be called in other countries). I had, after being referred to the 'ME/CFS Centre' and not finding much of value there, almost given up on the medical fraternity and decided it was pointless dragging my exhausted body to appointments with doctors if nothing was going to be treated. However, I decided to give my GP one more try as I knew he was a guy who generally listened and took my opinions onboard.

So, I spent a large part of this week nervously preparing. I had booked a double appointment so that, in theory, I would have 30 minutes of his time. I had also booked a nurse appointment for straight after, in the optimistic hope I might get some blood tests authorised. I identified various tests that I felt should be carried out to exclude underlying infections (from parasites, bacteria or viruses) and meticulously prepared mini-speeches on why he should accept my requests.

I began by asking him to honestly share his views on ME/CFS and on what he was doing with other patients who had the illness. He was very honest about finding treating the illness frustrating (he's a man and a doctor - he likes to fix things!) and that he believes it is a physical disability of unknown origin. The poor guy must have felt like he was speed-dating me whilst I weighed up his pros and cons. I explained that I was frustrated with the diagnosis having the implications of me being beyond treatment and simply being left to manage as best I can. I then began what I thought were going to be fraught negotiations on which tests I could have. I fully expected to be told that I had received all the standard blood work and that nothing else would be done.

To my surprise, he agreed to every test I asked for! In fact, he added one I hadn't thought of. He also said he wished his medical student had been present as I was an "expert patient" who could pass on valuable learning. Whether this was empty flattery or not, I don't know, but it sure hit the spot!

Regardless of whether or not the tests throw up anything we can treat, I left feeling validated. I was heard and I was respected. Sometimes the positive outcome doesn't have to be that what is wrong is fixed. Sometimes it can be that we are simply listened to. He has said he is open to exploring different treatment options with me as long as I can back up my requests with meaningful research papers/data. This is potentially massive when considering how far behind the U.S. the U.K. currently is. There is much I can explore now, with the faith that the wisdom of people such as Dr Lapp, Dr Cheney or Dr Klimas might influence my own doctor.

So, I gave some blood for tests and I have to go back to give more (a lot more!) soon. A very productive day!

This also links in with the aims I had when setting up M.E. Community Projects. What I hope to achieve isn't based upon righting all the wrongs out there. It isn't based on anger or cynicism or negativity. It is solely focused upon those little, tangible ways of making a difference and helping others to feel supported, heard and validated.

Things are moving well in this area. I have been lucky enough to convince two very talented people to take overall responsibility for the editorial and design elements and we have already begun scoping out the first resource we will develop. If you want to get involved in some way (be it research, opinions, writing or supporting the cause in some other way) I'd love to hear from you.

The email address is: me_community_projects@live.co.uk

Here's to more of us being heard and supported :)

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 :)

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

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

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

Why Blog?

After some thought, I've decided to start blogging.

Recently, my plans have had to change as a result of the onset of an as yet undiagnosed illness. Although, with hindsight, the onset has been gradual - the impact it has on my day-to-day life and my plans for the immediate future are only just becoming apparent to me.

Dealing with this is difficult but there is also the added element of dealing with the perceptions and expectations of those around me.  I have gone from leading a relatively normal life to becoming essentially disabled and it is proving difficult for those who know me to understand.  

I am not sure whether writing here is for my benefit or for the benefit of others but hopefully this does not have to be exclusive.  From my perspective, I need to detail the changes I am experiencing (whether they are for the better or worse) and it is also helpful for me to have a place I can store my thoughts.  Being isolated from the world around me is a big part of the impact my illness is having upon me after all.  Also though, I hope what I share here has some use for others.  For friends and family who want to understand why I'm no longer going out and doing things and for others who might stumble across this page and find comfort in someone discussing similar difficulties they are experiencing.

I welcome any input in the form of comments and links etc but I ask that contributers refrain from dishing out 'tough love' or telling me to 'get a grip'.  Whilst I am sure people mean well, it offers no constructive help for me or my circumstances as I am where I am as a result of something other than choice or a lack of positive thinking!

That's enough of an intro, I think.  I will aim to update this regularly but will try to avoid it becoming full of every little detail of my rather uneventful current existence!  Probably no danger of me over-blogging as I don't have the energy anyway ;)