Infinite Sorrow

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

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

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

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

Take care,

Barry

Is A Cure In Sight?

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

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

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

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

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

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

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

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

Take care,

Barry

A Little Bit of Everything

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

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

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

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

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

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

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

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

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

Take care,

Barry

What Next?

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

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

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

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

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

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

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

Take care,

Barry

How Did We Get Here?

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

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

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

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

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

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

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

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

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

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

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

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

Take care,

Barry