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.

A Short Break

I've decided to take a week or two away from my previous activities. This means no blogging, no Facebooking, no developing the Heart Rate Monitor forum and no working on my previously explained 'dream'. All of these are only on hold temporarily though.

I think this break will do me good on a few levels but it's mainly in response to how my previous ideas have been received within the 'community'. I have been surprised, and dismayed, by how hostile and negative some of the private communications received have been.

I appreciate what I have set out is my vision and I don't expect others to readily buy into it. I appreciate some might think it is pointless. I also expect to do the biggest portion of the work myself. I am fine with that.

I understand that this community is made up of people who are sick and might be struggling just to keep their heads above water and that they cannot devote the time or brain power to helping out. I am fine with that too.

What I am feeling angry about is how some have taken what I consider to be a selfless act and railed against it so. It makes me question the motivations of some who are active within this community of ME/CFS patients. I am saddened that the practical attempts to provide support and information, to those who might otherwise struggle to look after themselves in the absence of medical support, has been tainted by the politics attached to this illness and the bitterness of a few individuals. I must process that and it's best done away from being so active online. I don't intend to stay angry or stay away - I just need to regain my balance so that I can continue to move forward with what I still consider a worthwhile project.

To those out there who have been helpful in providing me with constructive feedback and kind offers of help, I thank you a million times over. It is only through pure-hearted and positive action that progress is made and I look forward to working with you all in the very near future.

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

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

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

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

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

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