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

Decisions

I should begin my reassuring any readers that I'm not going to be wallowing in self-pity this time around. My previous update showed a very unattractive aspect of how I'm coping with being ill and I know it didn't paint me in a very good light. However, I wanted to acknowledge that there are days when I feel exceptionally sorry for myself and get angry with 'fate' for bestowing this on me. Writing about how unfair life is becomes a pointless task and it helps nobody to read it so I will be avoiding such posts in future.

Today I want to focus on some great work being done on M.E./CFS in the form of an upcoming documentary. Please visit this link for more information. Part of the pre-production work is asking those impacted by the illness to post their personal stories in the form of videos. Seeing an intelligent, determined woman be reduced to only being able to speak in a whisper and hearing a story of a child with the condition who wasn't believed and was taken away from his parents by social services then thrown in a swimming pool to force him to swim allows me to once again be thankful that I am not in the grasp of something much worse than my current condition. I will try to post more information on this documentary as progress continues.

Also, over the past week or so, I've made decisions about my future and taken action. I have now contacted my University to confirm I am unable to attend this year. And, I have sold my car. I was avoiding making both of these decisions as they are confirmation of my current loss of independence but it was unrealistic for me to hope against hope that I would make a miracle recovery and I actually feel inwardly calm now the decisions have been made.

I had a period recently where I was achieving sustained bursts of feeling mentally alert (although obviously not too alert as I managed to scald myself with hot tea and knock my laptop over, busting the hard drive!). I was having period of 4 or 5 hours at a time when my mind felt light and clear and I was able to concentrate on tasks. This was bliss and I mistakenly took it as a signal I was recovering after 4 months or so of illness. Needless to say, it was only a temporary thing and I am back to being zonked again and having long period of having to stare into space or sleep. It's disappointing to feel back at square one again but I think that is just the nature of the illness and I will in future just be grateful for those brief periods of lucidity.

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