Archive

MS

Fed up.

Flippin’ fed up.

Flippin’ fed up and not very happy about it.

My life used to be fun and interesting and exciting and wonderful but now it is suddenly so dull and boring and I hate it.

So what, I hear you ask, has changed? What’s happened? My MS, that’s what happened. Thanks to a massive pressure sore that got infected and put me in hospital on intravenous drugs eighteen months ago I am now restricted to spending most of my time in bed, in my living room, instead of going out, doing stuff and having a life so the pressure sore doesn’t come back. I get to get up and go out occasionally but not every day like I used to. Just a few short hours of freedom every month and then back to my padded prison of pillows, sheets and duvet. Not so bad when it’s cold and miserable outside in the winter but oh so dull in the summer when it’s sunny and hot and I can hear the world happening outside, without me. I used to work full-time, had an active social life, got to go places and meet up with friends and do stuff all the time and have a real life and now I can’t. I used to moan about the weather, the traffic, my job, the crowded shops and streets, public transport delays, the fact there was never anything on at the cinema that I wanted to see. But no longer. My world has shrunk in size to become little more than a rectangular box with a small, hexagonal bump on one side. My living room, with a bay window where my bed is situated overlooking the outside world, and a door to the rest of the house that I only get to go through rarely. I get to interact with real life through my keyboard, through my television, through social media, through occasional phone conversations with friends and family and visits from my carers every morning and evening and that’s it.

Yesterday I had such a lovely day. I got up, was helped to dress, hoisted out of my bed and put into my wheelchair and then I went out into the world with my older child. Not that we did anything earth-shattering or exceptional, we just went to the lovely Sunday farmers’ market near our home and wandered around. We looked at various stalls selling cakes and fruit and veg and meat and ethnic fast food, sampled lots of different cheeses and bought a few, picked over bits of costume jewellry and books and pictures and items in boxes at the brick-a-brack stalls, ummed and ahhed over some small antiques and old LPs and black and white postcards from a bygone era and then went for a coffee and a snack at a local cafe where we got to meet up with my younger daughter. I interacted with strangers, got to meet one of my child’s friends who happened to be there too, felt the sun on my face, felt the breeze in my hair and got involved, just for once, with so-called normal life. Nothing amazing but, for me, very special and not ‘normal’ at all. I was getting to do something that, not so long ago, I got to do most weeks and something that the majority of people get to do whenever they feel like it. And, I didn’t realise quite how special it was until I didn’t get to do it any more. Well, not every week anyway.

Why is it that none of us seem to understand what we’ve got until we don’t have it any more? I know that it’s up to me to make something out of my new life but, if I could do it all again, I would smile at passers-by, chatter with some of the others waiting at the bus-stop, take more pride in my environment and just relish, enjoy and be thankful for my life and my environment. If I could go back and do it all again I would make sure I paid far more attention to the seemingly small things that make life so joyous and wonderful. And I would love it and be thankful for it far more than I ever was before.

Life is for living and enjoying and relishing so go out and live it and enjoy it and relish it just in case it changes when you least expect it and you find yourself fed up and watching others having fun when you can’t.

I don’t want to sound rude, resentful and ungrateful but I am getting completely fed up with the loss of dignity, privacy, autonomy and spontaneity that goes along with being a disabled person, reliant on homecare and personal assistants for my every need. It’s horrible and I hate it so much. I would give so much to be able to have a lie-in because I feel like it, not think about what I’m going to have for my lunch until I’m actually hungry, do something without having to plan it days in advance and have a wash and get dressed without an audience, but I can’t. Just for once, I’d like to be able to be left alone and to chose to do things, because I want to do them, without anyone else being involved, but it’s not going to happen.

After a year of frustration, with agency staff looking after me, I now have a team of lovely carers, whom I employ myself, who come in three times a day, and they do everything for me. Which, don’t get me wrong, is nice, but, just for once, I’d like them, if to were possible, to just go away and leave me alone. They come into the house first thing in the morning, often when I am still asleep, and wake me up, even if I don’t want to be awake. They bustle around, opening and shutting doors, making idle small-talk and turning on the lights. They go to the bathroom, get a big bowl full of water and then strip the bedclothes and my pyjamas off me, wash me and give me a bed-bath. Whilst they do this, and whilst I am still half asleep, trying desperately to get back into the lovely dream I was having only minutes before they came, they ask me what I want for my breakfast and for my lunch and then one of them goes to fetch it. I’m hardly fit for anything before I’ve had my morning coffee but I have to go through the morning routine every day before I even get a glass of water. Forty-five minutes of frenzied activity every morning and then, just a quickly as it started,  I’m on my own until it all happens in reverse in the evening when they come to get me ready for bed. And this is my life. No frivolous conversation about what was on the TV last night, no questions about what I did the day before, no talk about what I’m going to be doing next month or next year, or my plans for the future, just the same thing, day in, day out. No variation. Well, I am completely fed up with being poked, prodded, turned, talked to, flustered and disturbed all the time. I would like to be able to wake up when I want to wake up because I feel like it, have a wash in a bathroom with the door closed, without an audience, change my mind about what I’m going to wear when I’m halfway through getting dressed because I don’t want to wear whatever I got out of the wardrobe after all. I want to be able to go to the kitchen and choose what I want to eat for my breakfast by looking in the cupboards to see what’s there rather than having to choose from the supermarket delivery note. I want to get to look out of the window and THEN decide if I’m going out or staying in rather than make all my plans for the day in advance. I want to be able to do what most people do and live a ‘normal’ life. I want to make simple, little decisions about my life, on my own, without comment, but I can’t. Don’t get me wrong, I really do appreciate the dedication of all the people who help me on a day-to-day basis but, just for once, I want it to be like the old days.

Having the autonomy to do my own thing was never something I truly appreciated when I had it but, now that I don’t, I really want it back. Being able to do something spontaneously was never something I really thought about but now I can’t be spontaneous I really miss it. In the past I have just gone to the station and caught a train to the other side of the country because I felt like it, now I can’t even change my mind about my sandwich filling without having to ask someone else to deal with it for me. Privacy when it came to being seen naked or in my underwear was never something that really bothered me. Changing rooms in clothing stores and leisure centres didn’t bother me and if someone wanted to look at me or stare then so be it. Once you have given birth, with an audience of doctors, nurses and midwives, you get to realise your body is not really your own. Even so, that was years ago and I thought it was something I could put behind me but no, it’s back and it’s not likely to go away now.

I so wish I could just be me again and have my old life back but, unless someone makes a medical breakthrough and finds a cure for me, I’m going to face the fact it’s not going to happen. I am just going to have to grit my teeth and get used to being the new me. It’s not the life I envisaged for myself when I was younger or the life I would have chosen but it is the life I’ve now got. Spontaneity, privacy and dignity as I knew them are now for other people, not for me. My life is now different and there are many other people who are involved in it so, I suppose, I had better knuckle down and get on with it.

Roll-on the future, let’s see what happens next.

Today I woke up in a very reflective mood.

Disability, MS and me. I have spent the whole day thinking about it and trying to make some sense of it. Now it’s time to share those thoughts.

Here goes……

When I was first told I had Multiple Sclerosis, over thirty years ago, I was terrified. I was twenty-four years old, straight out of university, just starting out on being a proper grown-up, with my whole life ahead of me. Then I was hit by a medical bombshell. My world, the world as I knew it, collapsed around me. MS was something I knew very little about. I had vaguely heard of it but, what it meant for me, was a complete unknown. The only thing I really knew was that there had been a woman, in the village where I had grown up, who’d had it. She couldn’t walk, she didn’t go out much, she had used a wheelchair and she had died. That was it.

And now I had it too. Here it was, slapping me in the face. Suddenly it was part of me. It was real. All too real. My life, my future.

What it meant was something I would have to consider, and fast.

Great.

Initially I spent a fair bit of time feeling very sorry for myself. I asked my long-suffering GP a whole load of self-pitying questions and then, as the internet wasn’t really a thing thirty years ago, I went to the library to do some research. What was this thing that had got me in it’s claws and what could I do about it? The answer appeared to be, not a lot. Unlike today, I didn’t find any ‘uplifting’ biographies written by fellow MSers or friendly support groups to pass on advice and information about dealing with the disease, just dry medical tomes which told me little about what to do and how to live, just what was probably in store for me further on down the line and it wasn’t very cheerful.

In other words, not a lot of help.

So that was when I made a decision. I was going to carry on carrying on. That was what my beloved Grandfather would have told me to do so that was what I would do. What choice did I have? Either I could get on with my life and fight or I could give up and despair.

And that wasn’t me.

Some people may have said that I was burying my head, not being realistic and just hiding but I don’t think I was. I was a young woman with a whole load of life ahead of me and I was going to do my best to enjoy it.

I moved down to London, found a job, had a family and carried on. At first, and for several years, the MS didn’t affect me much. Sure, over time my walking became affected and things got a little harder but I coped. Then I was offered and accepted a temporary job with a local disability group. And that was when my new life really started. I got to meet other people with a host of different impairments, I learnt about the world of disabled people, I found out about all the support groups that were available and I got involved with proper activism for the first time.

Over the subsequent twenty years, whilst the MS got worse, my life has got better and better. I have been involved with some incredible things. I have been to some fantastic places, I have made some very special friends that I would never have got to know otherwise. I have done a post-graduate Law qualification, I have started writing and, through it all, I’ve enjoyed myself and had a good time. All things I might not have done if I hadn’t become become disabled and been given the opportunity and the tools to learn to live with it.

The life I have now is very different from the life I might have had if I hadn’t become ill but, whether I would have enjoyed it as much if it hadn’t happened, is something I will never know. All I can truly say is, thanks to my MS I have become the person I am today and I am grateful for it.

I live it, I feel it, I own it. Bring it on!

 

Why is it that, when non-disabled people are talking about or to disabled people, they feel that it is perfectly fine to say or ask whatever they like? Regardless. Absolutely anything. Things they would not dream of asking or saying about a non-disabled person but, because we are disabled, they feel they have a right to know.

Surely, people don’t do that, I hear you say. Well they do. Granted, it’s not everyone, most people are great, but it certainly does happen and it is definitely not fine. Just because we are disabled it doesn’t mean we don’t have feelings. Rule of thumb here guys, if you wouldn’t like people to say what you are about to say about yourself, then, in all likelihood, your disabled compatriot is unlikely to like it either.

And, most of the time, it’s not necessary either. Again, before you open your mouth ask yourself why you are about to say what you are about to say? Is there a valid reason or are you just being nosey. In many, if not most cases, it’s the latter and not the former. You really don’t need to know at all.

So what kind of thing am I talking about then. Well, I’m sure just about every disabled person in the country, in the world really, can think of more than one occasion when someone has said something that was unnecessary or hurtful or when they have been asked something intensely intimate and private when there was no need.

Last weekend a friend of mine was very upset when she overheard a visitor to her home in conversation with her partner. My friend, who has an impairment which can cause her intolerable pain, was in bed after having a very bad night due to pain and nightmares. The inconsiderate visitor was heard saying that she thought my friend was extremely lazy and asking, couldn’t her partner do something about it, because it just wasn’t right for someone in their early twenties to be so idle. Thankfully, her partner dealt with the situation very well and the visitor later apologised but, knowing that my friend is disabled, why did this person feel they had the right to say what they did if they didn’t know the full circumstances?

And it’s happened to me too. Just because I am obviously disabled, and use a wheelchair, I have been asked questions no-one in their right mind, would ask a non-disabled person. “How do you go to the toilet?”, “Can you have sex then?” and, said with some incredulity, “You mean you’ve got a job then? You work?” These are genuine questions I have been asked by random strangers on the bus or in queues at the checkout. I have even been stopped in the street and asked if my children were mine because they weren’t disabled too. Who thinks they have a right to do that? I think the most hurtful question I have ever been asked personally was when I went to my GP to get the result of a pregnancy test. The doctor had the brass nerve to say, almost without stopping for breath, “Congratulations Poppy, you’re pregnant. When would you like the abortion?” Once I’d retrieved my jaw from the floor, I said I didn’t want one. She then said, “But you have MS. How will you look after a baby?” Apart from the fact that, at that time, my MS was fairly newly diagnosed and was causing me very few problems, she was also completely ignoring the fact that I had a partner, parents, a sibling and other friends and relatives who could lend a hand if I needed one. Much the same as any other young, pregnant woman actually. Why did my MS diagnosis mean that this woman felt she had the right to say what she did. In my opinion, she didn’t. My MS didn’t mean I was completely incapable. Sure, I might have a few difficulties but, doesn’t everyone else? Thankfully, her fears were, as I had expected, unfounded and I had no problem with my pregnancy whatsoever. Or with my second pregnancy two years later for that matter, a very different experience altogether, thanks to a new, understanding GP and a supporting Midwife.

Just because someone is disabled it doesn’t mean their life is public property. How their impairment affects them should be on a need to know basis only and if you don’t need to know, don’t ask. It’s private and unlikely to be any of your business. If you wouldn’t like to be asked yourself, move away and stop being a poke-nose.

I had such a lovely time last week. I got to be a grown-up, which doesn’t happen very often, and it was so wonderful!

Confused? Let me explain.

As a severely disabled person there are many things I cannot do for myself. I can’t walk. I can’t get dressed by myself. I can’t wash myself. I can’t make a meal. I can’t even make myself a cup of tea if I want one. I have to rely on someone else to do everything for me.

Now, before my medical condition deteriorated slowly and inexorably in 2014, I was perfectly capable of doing all that needed to be done either on my own or, if necessary, with the assistance of my, now adult, children. I went out to work full-time during the week, looked after my own family, visited friends in the evening, was a lady who lunched at the weekend, attended social events as and when I wanted to, did my own shopping, stayed up late if I felt like it, had a lie-in at the weekend and got to go away on short breaks if I fancied it. In other words, I had a lifestyle that was comparable with the lifestyles of my peers and the majority of the adult population of this country and most of the rest of the world. I was an adult who got to pick and choose what I wanted to do and I did adult things. In my family we call that adulting. I spent my life adulting.   

Then I got sicker and things changed. The Multiple Sclerosis which has been part of my life for the past thirty years decided it was going to throw a spanner in the works and deteriorate. I wound up in hospital and, although I am a lot better than I was, things have had to change. For the last eighteen months, this has meant that I have had to have carers, or, as many disabled people prefer to call them, Personal Assistants. PAs. PAs coming into my home to attend to just about everything I need, every single day. Quite hard to come to terms with for an independent woman such as myself but I don’t have an option. It is either PAs in my own house or live in residential accommodation away from my family with no independence whatsoever. No choice really, so PAs it has to be.

And that’s the issue. For most of those eighteen months my PAs have come through an agency, paid for by Social Services. I have had little or no control over the care that I receive. I have not been able to say what I wanted done, when I wanted it done or how I wanted it done. I have had no choice at all. My ‘ladies’, as we call them, show up every morning at 9am to wash me and get me ready for the day, make me breakfast and do a small amount of simple housework if they have the time. I have two ladies, for forty-five minutes each, to do everything. At lunchtime I get thirty minutes care from two more ladies when they make me something to eat and get me another cuppa and then, in the evening, another two ladies come at the horrifyingly late hour of 7pm, for forty five minutes each, to get me ready for the night and, if my children are out, warm up a ready meal for my supper. And that, until recently, was it. With a little careful negotiation I was able to make bedtime as late as, shock, horror, 8.30pm but only once a month, if I was lucky, as a special treat. Then about two months ago, I managed to get onto something called Direct Payments whereby Social Services give the money they are prepared to spend on my care package to me and I get to employ my own PAs to come when I want, and do what I want, and everything I feel is necessary, at a time that suits me.

And I am loving it!

I have got my life back! I get to choose who comes, when they come and what they do when they are here. I don’t get to choose how long they are here for, Social Services still dictate how much time I get, but not when that time has to be. And this means that, if I want to stay out past around six-thirty in the evening, I can!

So, last Thursday, I did! I went out with some friends, to the pub, for food, alcohol, conversation and fun and I didn’t have to get home for my evening care visit until the startlingly late hour, for me anyway, of ten-thirty. No watch-checking, no worrying, no rushing, no leaving the party long before the end, no having to act like a small child or a teenager with a curfew. I got to do some adulting again and I loved it. I have not enjoyed myself quite so much in a very long time.

And, now that I have discovered that life can be fun again, I want more. Adulting, in future, will have to have a much greater role in my life. I already have my next night out planned and I’ve only got a couple of weeks to go. After eighteen months of being treated like a very small child I can wait. But not for long.

Life is for living and I want to do some more.  

Long live adulting.  

This morning has been interesting. I have been asked if I could write something about how the British Welfare Benefits system does not take into account the needs and difficulties experienced by disabled people with a medical condition where the effects of the condition fluctuate, so, here goes!

I have Multiple Sclerosis. I am now quite advanced with the condition, being restricted to my bed most of the time, unable to walk, move or do anything for myself so the restrictions I have are pretty obvious but, and it’s a big but, I have very clear memories of my battles with the system and when I was still able to go out to work.

The main problem, as far as I am concerned, is the system’s inability to be able to cope with people whose condition means that the effects fluctuate. DWP forms and rules seem to like people with conditions that are cut and dried, where nothing really changes day to day. But for many of us, people with MS or ME for example, life is not that simple. People who find that what they can do today is not the same as what they could do yesterday or what they might be able to do tomorrow. And this fluctuation can be on an hourly basis, never mind a daily basis. Someone with a fluctuating condition might be able to do whatever you wanted this morning but this afternoon? No chance.

For me, the main effect of my MS that was not understood, was my fatigue. DWP advisers and employers and many other people seemed to think that MS related fatigue and sleepiness were synonymous with one another. Let me tell you, they are not. Sleepiness can be cured by a nap, fatigue cannot. When I am fatigued due to my MS I can’t move, I can’t concentrate, I can’t think, I can’t really do anything much until it wears off. And how long that will take is anyone’s guess. For someone with  fluctuating condition life can be a daily lottery where we have no real idea of how things will pan out. We have good days and bad days and kind of OK but not brilliant days.

And that’s the bit Welfare Benefit forms and Benefits Assessors can’t cope with. They want people to be able to answer cut and dried questions about their capabilities but, what they don’t seem to be able to understand, is that when it comes to people with fluctuating conditions, we can’t. Questions such as ‘Can you lift and move a carton of milk’ are demanding a ‘yes’ or ‘no’ answer. Either you can or you can’t. There is no provision for ‘maybe, it depends on my fatigue levels’. Before my MS got so much worse I had ‘I can’ days, ‘I can’t’ days and ‘I’m not promising anything but I’ll try’ days. On a good day I had no trouble lifting and moving little things. On a bad day I could barely lift my arms, let alone anything else. On a ‘maybe’ day, it was a hit or miss experiment. If you had caught me at the right moment, shifting that milk carton and making a hot drink would have been no problem whatsoever but, if the fatigue had hit, you would have been much more likely to get a puddle on the floor when I dropped the carton than a cuppa. If I was having a fatigue ridden day my arms would be aching and unresponsive, I would have cloudy or double vision and I would have been practically incapable of concentrating on anything for more than a few minutes. And there’s your difficulty. What the DWP seem unable to cope with is when assessing people with fluctuating conditions is that these days don’t follow a set pattern.

If I were to be asked what might make things better for people with fluctuating conditions then I would suggest that the DWP should pay far more attention to what a benefit applicant’s consultants, specialists and medical experts say in their reports. They are the people that know us and, in some cases, have been treating us for years. Benefit Assessors often have little or no medical expertise whatsoever yet they are the people who are being expected to rule on complex conditions they don’t really understand. This is what needs to change. This is what the DWP and the Government doesn’t seem to understand. People with fluctuating conditions don’t fit neatly into officialdom’s neat little boxes and pigeonholes. Trying to get help and support shouldn’t be a lottery. The stress caused by continually having to explain yourself and how your impairment affects you can often make things worse. Reassess the system, not the people who use it and maybe, just maybe, things will get better for all of us.