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

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'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