Tag: cerebral palsy

Book Review: Standing up for James by Jane Raca

jacksdavieLeave a comment

Jane Raca has written the book she would have liked to have read in the weeks and months following her son’s traumatic birth. Her son James was born at 25 weeks, (three weeks earlier than I was). James suffered catastrophic brain damage which left him with autism and very severe cerebral palsy, among other things. Instead of being supported as she might have expected and certainly deserved, Birmingham City Council failed to provide her family with even the most basic care, never doing a core assessment which would have ensured the needs of James parents and siblings were met as well as his needs too. However, “nothing happened” An oft repeated phrase, which meant Jane’s health and emotional needs were ignored, as well the emotional needs of her other children, and her marriage also buckled.

Two things shine out of this book: Jane’s love for James, and her son’s massive personality. I urge you to read this book, whoever you are: social work student, parent of a child with special needs, or just someone interested in their story. You will laugh lots, I can promise you that, it’s a very funny book. As well as cataloging the failures of the council and  chronicling her fight for appropriate provision for her son’s needs, Jane considers the ethical and moral issues at stake when children such as James are saved at all costs, and the implications of this for hospitals, local authorities and families themselves. You will laugh, cry, get angry and laugh some more. Go, on, buy it, you know you want to!

incidentally, Birmingham City Council have failed adults with disabilities and their families too. Several major charities took them to court in 2011 for changing their eligibility criteria (the circumstances in which care should be provided) from substantial and critical needs, to caring for those with critical needs only.  If Leeds City Council were to do this, the likes of me would not have any care provision at all. Fortunately, Birmingham City Council Social Care were judged to be unlawful, so they lost the court case and had to rethink their whole poThere are indeed currently many concerns surrounding social care which have been newsworthy of late, and new problems will continue as council budgets are further squeezed, especially when the Independent Living Fund (ILF) closes in 2015. This was a fund which provides money for care for those with the most severe needs effectively topping up money provided by social serves. This has been deemed too expensive. N.B. care is expensive! As a starting point, go and read Standing up for James!

Image

true-to-life?

jacksdavieLeave a comment

To tweet, or not to tweet

When I started writing my blog I resolved to keep it as realistic to my life as possible, which meant the good the bad, and the stuff in between. It also means, not over-exaggerating things, and thinking before I tweet, or post! I am sure most of us are aware by now of the tendency a lot of people have to over-share, in part I think due to the false sense of intimacy that one can often have. We tend to forget about things like targeted advertising, which is when Facebook sells our info to advertisers, so that their ads get to the right people. Also because we are writing things down, perhaps it feels just like writing a letter or an email, but more people than just the friend(s) it was intended for read your updates, tweets, and posts. With all of that to think about, and perhaps a lot I’ve left out, how do we document what really goes on in life, especially with things like disability or chronic illness without being so negative you drag people down with you, or so polished that people think everything is ‘fine’ all the time?

 

‘One of those days’

Today was one of those days where I think, “how did I ever do all ‘this’ on my own for three years?? ‘This is getting up, a shower, getting dressing changing my stoma bag breakfast, taking my medication, getting ready to go out. Sounds simple enough? Try adding in it being ‘one of them mornings’ like everyone can have sometimes, plus the idiosyncrasies of an ill/disabled body, and all the aspects of having care, and there’s one toxic mix.

The morning started fairly well, as I got myself out of bed, with only a bit of crawling from bed as gingerly as possible. So far so good? Wrong! The (stoma) bag had ripped overnight, even though most of it had drained into the connecting night bag, meaning the ‘day bag was almost empty. Have explained all this to ‘specialist nurse’ who says it’s ‘just’ a manufacturing fault and I should use the other batch of bags. Sorry but I need every last one! This is also the only system I can use because it’s the only one with a night bag suitable for use with my type of stoma, when it’s likely to have to cope with undigested food and all the rest without getting blocked. So to do anything about the bag is a losing battle, unless I win the lottery… in which case I will commission the best in the country to deign me a bag for my type of stoma which is thin, durable, flexible, and kind to skin, as well as sticking to it, and has an accompanying night bag system than can come with my peculiarities. 

None of this being an option, we had to deal with what was in front of us, so we changed all the parts of the stoma bag before I showered. Unfortunately, the bag refused to stick, so we had to start over. This combined with other issues, meant my carer call was longer than 2 hours, just for a ‘morning call’ when I am only allocated an hour and a half! Obviously, I was utterly exhausted after all this and relieved to have a break before I went horse-riding. I started writing this, and got myself ready to go out. This means plenty of planning ahead.. a healthy lunch, that I can successful digest, plus my medication dispenser fondly known as the “UFO, my plastic beaker, and all the rest of the ‘stuff I can’t go anywhere without.

Today, transport went surprisingly smoothly — result! This time I used a social enterprise company. The only firm that will drive me the two miles while I’m in my electric wheelchair. Any other refuse, or I have to use a ‘normal’ taxi with my little manual chair, which makes me completely dependent on others. Having got to the social enterprise where I learn with no incident, it was time for my ‘team’ to swing into action. The woodwork shop have made me beautiful steps, complete with handrails to help me get to the ex police horse without being lifted like before (health and safety ‘MARE as I’m sure you’ll appreciate/! Now my friend helps me climb the steps and supports my trunk enough to stop me falling, while someone else drags my leg, now rendered immobile, over the back of the saddle, while someone else keeps the horses head still… mission accomplished!! Loved it today… was almost tropical weather, beautiful views, and great company. Me and the ‘team’ got me back into my chair without incident as well, which is an absolute JOY given how painful it was before. Don’t get me wrong, it is flippin’ painful now, but at least there are less steps in the process and less risk involved — HURRAH!

I ate my healthy lunch, and socialized without incident, making it home with home with help from the social enterprise again. So far so good… now to get on with this blog, writing for something else and catching up with things. I was totally wrong! I spent most of the afternoon waiting for the district nurses to arrive to help me with the bag. No one knows what to do about any of this as I am all out of options. As I sat here now, the bag the nurse(s) put on hasn’t stuck so my stomach is covered in my lunch or dinner. I am refusing to look. My skin around the stoma is already red-raw and throbbing so it’s unlikely to get better from this wither. Feels like a wasted afternoon and evening. I have between 30 mins and an hour to get more productive things done, starting now! Wish me luck… I think I might need it!

Introduction to the realities of illness and disability…

jacksdavie7 Comments

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…