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 :)

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

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

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