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

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