Blogging, but only just…

I’ve been wondering recently, how much of a readership I have left, given how sporadically I have been posting here. In an ideal world, I’d love to post every day, and started out with intentions to do so. Unfortunately, the realities of life barged their way in. I’m beginning to try to wrestle my life back, but it’s best to start from nowhere. If I don’t expect anything, I might just surprise myself! I’m sure everyone living with illness or disability, or both, in my case .will have a vastly different experience.  Let me try to explain why, and what some of this means for me.. This post also answered today’s daily prompt

The same name, different realities…

Certainly, both levels of illness and disability, or one or the other, can vary for some people from day to day, from week to week, and from person to person. Two people with the same’ disability or illness, and even something which manifests itself in similar ways, will still experience it differently. I know someone with cerebral palsy, who up until and including the time I knew them, by their own admission, had never experienced a day’s pain in their lives. I know people with cerebral palsy who have asked me what a spasm is. I also know people with cerebral palsy who can do far more than me before they hit the same level of tiredness, and who are not ‘ill’ beyond the standard colds and flu and whatever. However, I am thankful that I do not have some of the other traits of cerebral palsy, such as epilepsy, or a significant learning disability. The closest I come to a mild learning disability is that my level of spatial awareness is too poor for me to be able to read a map or to learn to drive. I live my life within a restricted geographical area and am happy within those boundaries. Cue panic if I even have to step outside those.

The medical part of the illness…

There are aspects of my disability I can ‘control’ by the way I manage it. Other things, however, have a life of their own, such as my ileostomy bag. I had a meeting yesterday to talk about the management f it, and it turns out I can only use one particular bag cause of requiring a ‘high output’ bag overnight… There are hundreds of styles of ileostomy bags and different pieces of kit, and it’s typical of me that my needs only half-suit one particular system. Those things are very definitely out with my control, and can become incredibly frustrating.

There are many other things out with my control such as what time I get up, and go to bed, how tired I am, how much pain I am in, the affect this may or may not have on my speech, my mood, and my quality of life. The more ‘needs’ you have, the more professionals, and agencies, and clinics you need to allow into your life to help you manage aspects of it. Often it is only about management, not cure. Each person often only sees their part of my care in isolation, so for example, there is a brand of painkiller than would help me manage the shortness of my gut, in a small way, but this has a horrendous affect on my fatigue, and does not manage my pain in the most effective way. There is a treatment I am having to manage other symptoms, but that again, is not a cure, and surgery not an option. Neither is surgery for a reversal of my ilestomy. So I have had to learn to accept these things.

There are some things I can accept, and indeed, even some tings I can ‘relax’ about. I am learning to ‘go with the flow’ even. For example, I am learning not to be a control freak over what food, and brands of food, is in the fridge, to mind the way the washing is put on the airer, or to mind the way my hair is dried. I am learning simply to feel relieved that I can often have these things done for me, thus saving energy I either don’t have, or energy I can use for other things. There is also of course, lots I am still learning, like finding things that can increase or decrease my levels of pain, however small those things are, such as ‘gentle’ (!) exercise at the gym, a nap, or full on sleep in the morning. I think for me, morning naps work better than afternoon ones! All of this said there is still much I wish I could do. Just getting through every day seems to take so much energy.

This was the week that…

So far this week, it’s been unusual in that I didn’t have a ‘sit’/PA-type time on Monday. Plenty of time for a blog post, and article, and a couple of other things? Wrong!

Carer C arrived in t flat right on time as usual, only to disappear just as quickly having been called away to another client who cannot get themselves out of bed. She helped me to sit up, and then left me in bed, with chronic back pain. Bless her, she returned as quickly as she could, did some of her duties and was about to get me washed when someone pressed the entry button on the intercom. Here was the nurse…! A few minutes later, the morning routine resumed. Having found something suspect about the stoma, I sat repeatedly calling my local surgery for an emergency doctor’s appointment, which, thankfully, I got. All of this done, there was the morning gone… indeed time slipped by until 2pm, by which time I’d had enough and phoned a friend. I did get a break in the afternoon as I went off to have afternoon tea with a friend. Now I thought, I could breathe a sigh of relief. My main key holder arrived later to help me put my newest medication in the U.F.O (noisy, spaceship shaped automatic medication dispenser connected to a call centre. Unfortunately, as my friend/key holder explained, the call centre is unhappy about how much medication I seem to miss. Cue upset from me, a long discussion, and trying to find yet more strategies to help me cope with another problem. Lovely of said key holder/friend to intervene though. Went to bed thoroughly exhausted, however, this was the kind of start to the week that impacts on the rest of it…

The rest of this week has just flown. Tuesday was a hospital appointment, plus a blood screening, and a sleep in my wheelchair in the afternoon, and evening. I knew Wednesday would be no different. Each of the first three days of this week have been ‘busy days for me. Almost more than I can cope with. Together, absolutely more than I can cope with. Just one of those days in a week can be enough for me! Wednesday was an early care call, after which I tried and failed to get some writing done before I went to my friend’s house for the fortnightly Women’s group. A quick lunch, and a meeting with a district nurse (DN) manager, the Community Stoma Nurse, my Joint Care Manager (the NHS version of a social worker), and  Carer C, with a lot of verbal input from me. If I was exhausted before, I had absolutely no energy now! A curry, a rest, and I trundled off to lead the prayer meeting, sounding surprisingly awake. However, all of this effort also involves what is called “Payback Fatigue”. I suffer a lot of this. The more I can pace my week, doing things at a slower, equal pace, and in an organised way, the better. However, this is something I am still learning to do, and is by no means the whole solution. By today then, I was floundering. I woke up with my stoma bag having burst, and went back to bed after Carer C helped me complete my morning routine. I woke only to see the nurse, and fell asleep again. Having woke up when Carer C arrived to do the sit/Pa time, we decided I had enough energy to go to the gym. Make no mistake, I am no fitness fanatic. I can manage a couple of machines, and a few specialist machines which help with gentle stretching of sore muscles. This was enough to send me off to sleep again. So frustrating. So much sleep, from so little activity!

So, what about the rest of the week?!

I wrote half this blog before sleep, and half afterwards. I fear that after reading this, I will have put most of my readership to sleep! I have written it to try to illustrate some of the frustrations and complications, as well as some of the lessons that come with living from long-term chronic illness and serious physical disability. I feel there is a lot of ignorance in general among the government, as well as the public as to the everyday realities of living with such things, to say nothing of the economic consequences. I hope to get some more constructive things accomplished in the next few days, but only time will tell…