Life - Finding Meaning and Maintaining Ethics

The title of this post is rather wordy but it reflects what is occupying my mind most of late. I was reflecting on the fact that, this month one year ago, I was submitting my essays and sitting exams in the first year of my Social Work degree. I was very happy with the marks I attained, even though I was really struggling to function towards the end of my writing and during most of the exams. One of the essays I scored highest on was a piece I wrote on Values and Ethics. A subject that I initially found frustrating but that I gradually grew to be fascinated with. As it links in to what I want to write about today, I have posted a copy of the essay for download HERE.

The essay is very focused upon a social work perspective and that, combined with an exploration of the ethical models of Aristotle or Kant might not be of interest to many people. I wanted to provide context in addition to what I'm writing now though and it is another indication of how different my focus was only one year ago. And yet, how I'm almost wrestling with the reality this very day.

I appreciate this might all seem confusing and opaque so far. My apologies. I mentioned in a previous post that I felt I was standing at a cross-roads in respect of so many things lately. Decisions I make and actions I take will change my path. Returning to values and ethics, I guess 'consequential-ism' is a good word for what I mean. Everything I think and do has a consequence and leads me somewhere (and also leads me farther away from places/people).

The support of the physiotherapist and occupational therapist had given me a boost. A very welcome one. It also creates consequences. My initial enthusiasm about the delivery of the elbow crutches created a faulty sense of what my life would be like from this week onwards. I would be out and about with my crutches, no longer housebound. Well - no. In reality, I still cannot stay standing up for longer than a few minutes. Crutches aren't going to fix that.

I also fear I might become a measure of success for the therapists. Will they be judged on whether they can make me 'better'? Already, one of the therapists has suggested CBT and normalising my sleep and waking hours and activities. Unfortunately, it isn't so simple. I must sleep when I cease functioning (or at least rest by staring into space and laying flat) and that cannot be dictated by a clock. So, dilemma number 1: Am I helping or hindering myself by engaging with a Rehab team? Am I being defeatist and negative by not trying to fit in with 'normality' in terms of rest periods and activity etc?

And now we return to values and ethics (it is all linked, I promise!). What the hell am I to do with my life? This question keeps coming back into my mind again and again. I am struck by there being some wisdom in stopping focusing so much on illness. Yes, I am unwell and, yes, my abilities are much decreased. But is focusing on this so much 'healthy'? Is surrounding myself with others who are focused on their illnesses too 'healthy'? Then there is the opposite side of the argument. The wrestling with ethics. Now I've become aware of the suffering that goes on amongst people I've become close to, now that I've been given glimpses of their everyday struggles, how can I ethically say that I should spend less time focused upon illness? Shouldn't I ethically be spending whatever energy I have in trying to find ways to make a difference in people's lives? So, dilemma number 2: Should I focus less on my own illness and/or the illnesses of others or should I devote more of myself to helping others?

These things are best in threes, apparently, so I'll also mention the next thing I'm toiling with. How do I find a balance between acceptance and trying to get better? I strongly sense (and others have suggested it to me) that acceptance is something I am struggling with. For me, acceptance means giving up and consigning myself to being ill forever. My instinct is to keep researching, keep trying new treatment ideas and keep aiming to protect what function I currently have. Again, there are consequences to this. Life is passing me by. What if I just accepted this is what I'm currently like and tried to carve out some sort of life for myself to work alongside my limitations? So, dilemma number 3: How can I make peace with my current lack of health and still retain a desire to get better?

If you have reached this point, I applaud you. This will not be regarded as one of my more coherent posts. If I have confused you, I apologise. Confusion reigns supreme for me right now and perhaps putting all this 'out there' will bring some form of clarity or elicit some form of sage advice. Worth a try!

New Path Awaits

So much to digest since my last update.

Let's begin with the previous post. In it, I very bluntly talked about the future and the fact that suicide was always one of the options on the table. Mostly, this was understood but I feel the need to clarify that I was NOT suicidal. I don't intend to take my own life tomorrow, next week or next month. It's simply the case that it must be kept in mind along with the possibility that I might be permanently unable to take part in life to any great degree. I know there are some people who love me who worry when they see me mention such subjects but I have always taken the view that this blog should be full of raw honesty and I have to maintain that decision. I will, from time to time, talk about subjects that are taboo within society or that unsettle others. That's just the way it is.

My last update also elicited a very interesting conversation with a friend. Let's call her April (not her real name). April was one of those I probably classed in the broad category of 'healthy friends' and my last post expressed how I felt like I didn't exist anymore. April got in touch and was quite angry about the assumptions I was making on the subject. What initially began as two very opposing views gradually turned into a very useful discussion that made me think a lot about my present reality and my future. It turns out that April has been suffering from Rheumatoid Arthritis since October last year, a condition just as incurable as M.E. and every bit as disabling (and probably much more painful). April has also had to adapt to a life where a lot of her independence is lost and she is battling very unpleasant symptoms with an illness that is regarded as chronic.

April takes a very different approach to the one I have taken. She doesn't make her condition public on places like Facebook for example. I, by contrast, have surrounded myself with Facebook friends who are also chronically ill as I need to feel understood, believed and supported. After reflecting for a while on our different approaches, I can see positive and negatives in both. The subject is way too long to get into right now but I will be writing about it in due course as it fits in with some very important decisions I've been making lately.

Returning to the present, today I was visited by my existing Occupational Therapist and an OT and Physiotherapist from the Rehab team at the local council. My existing OT was delivering my new bath chair and the Rehab team were here to talk about how I can have a decent level of independence and keep my muscles from wasting away without risking crashes/relapses.

The bath chair was a shock. Such equipment is very clinical looking and is designed with the elderly in mind more often than not. It therefore is quite difficult to psychologically adjust myself to needing it. It looks very like a stair-lift and operates the same way so it's hard not to imagine one of those TV adverts with the old dear travelling up the stairs with her cup of tea in her lap. However, I tried it out and there is no doubting it will be useful and will allow me to use much less energy when bathing.

The rehab team were focused upon more physical aspects and we have agreed a low-level exercise plan to try for a couple of weeks and see what the after-effects are. I'll probably keep an 'activity diary' so I can measure how much I can do without 'crashing'. I'm also going to get elbow crutches to try as they may allow me to be on my feet a bit more without being in danger of falling over! They also told me about a Community Car service that sounds wonderful. I would pay for it in much the same way as a taxi, and would have to book the service a few days in advance, but the driver and vehicle would be a lot more disability friendly and could allow me to have some independence in terms of GP and hospital appointments etc.

All of this has really lifted my spirits. I am delighted with how helpful and compassionate the therapists have been and I really feel like I have people on my side. I also feel like I have aspirational goals in terms of independence and getting some sort of quality of life back. It feels good to entertain the possibility of escaping these four walls.

A few days ago, I had been at a cross-roads and had made a decision that it would be worth having temporarily increased symptoms if it meant I had some sort of life experience again. So, the support from the therapists are going to fit very nicely with that decision. It might be that my abilities remain pathetically low for a long time to come but it seems important to try and check where my boundaries are and how much I can do. Even having one day of 'activity' each week would be much better than the current situation where I am almost living in bed.

So, a new path awaits. One that will be difficult and will contain setbacks but one that has great potential and that I want to try. I still have to work out a lot of stuff in terms of what I want from my life, healthy or ill, but that can be a work in progress. For now, it just feels important to have a little hope for the future. There are also a couple of 'treatment' options I am considering but I will get into those another time as this post is already way too long!

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.

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 :)

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

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

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

Infinite Sorrow

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

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

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

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

Take care,

Barry