Nothing to get up for?

As I have previously indicated on this blog, after 14 years of progressive illness and disability, I had to finally give up my career almost 3 years ago. I regard it as one of the hardest things I have ever done and, to be honest, something I am still coming to terms with.

Society has a very poor view of benefit claimants. Admittedly when any individual person sees or hears about me and my story, they always say "oh, we don't mean people like you". But it still grates and makes me feel angry or inexplicably guilty to see headlines about benefit scroungers, or 75% of disabled people really being fit for work (retractions later made), or 1 million disabled people dropping their claims through fear of assessment (claim later officially reprimanded by the office of statistics).
You only have to look at this recent tirade from an MP about badger protesters to see the sort of contempt and prejudice we may face.

I thought most of them were in the habit of lying in bed until the pubs open, or until the postman arrives with the benefit cheque (or do such things get paid straight into their accounts these days?)
Either way, since they are all malingerers and scroungers there is no real incentive to leap out of bed as soon as the dawn chorus strikes up.

Even if you ignore these false statistics and prejudice, the press and government is full of language such as people "festering" or "abandoned on benefits", being "written off" and people needing a "purpose".

So where does that leave someone like me, who already can't work and can only expect to get sicker health wise and more "disabled" as it is understood in general language.

Am I festering? Is my life now meaningless? Do I have nothing to get up for?

My response is no and I resent the implication that I stay in bed all day out of laziness or that going to the pub is my only goal in life.

After all, do working people only get out of bed on work days? Do they stay in bed all day during holidays and weekends, unable to find the will to get up because they don't have to go to work?
Do pensioners suddenly stop living when they reach retirement? Do we likewise consider that they also "fester"?

I'm not saying there isn't some readjustment. Work is a huge part of your life and losing it leaves a great big gaping hole, even more so if it is a "career" rather than a "job".
When you lose it due to illness, then you are obviously also having to deal with serious ill health at the same time. This readjustment does take some time, both physically and emotionally.

However being unable to work need not prevent you from finding things to do within your capabilities and which are worth getting up for. These new hobbies or activities may be a very long way off employability and may even seem "low level" or "small" compared to what you used to do (most of mine are done from bed!), but they can still be enjoyable and fulfilling nonetheless.
Some may simply provide personal enjoyment, but others may have a wider impact and contribute in a positive way to society.
For instance for a while I helped out on an online support group for people newly diagnosed with lupus, as this was something I could still do while bedbound.

Most of all it doesn't stop you being a valued human being to your friends and family. Maintaining these relationships is both vital and rewarding. It can also be difficult and challenging if you are very ill. Remaining (or becoming) a dependable and valuable parent/daughter/son/sibling/aunt/uncle or friend/godparent can be very large goals in themselves.
For example personally I am mostly housebound and bedbound (a situation I've improved by replacing my sofa with a daybed). I therefore invite my friends family to visit me instead rather than me go to them. Luckily they are able to do so very often and on a regular basis.
The main issue is that these visits are extremely tiring for me, and usually even physically painful. So they are something I prepare for and time carefully. The rewards though are indisputable, not just for me but for my friends and family. It is without doubt, as it should be, a two way gain.

In summary, while I may mostly be housebound and miss both my work and all the other more active hobbies I used to do such as sport and music, my day is still full of things to do as and when my health permits, however "small" they may be (just intermittently writing this blog when well enough is one of them). Some of these things simply bring personal satisfaction, while others I hope are having a positive impact on other people's lives, be it my friends and family or further afield.

A life can be good, fulfilling, rewarding and worthwhile without paid work if absolutely necessary. While I agree people should work to support themselves financially if they can, to keep implying that those who can't sit sadly around all day, contribute nothing and are worthless is both insulting and untrue.

Fighting illness isn't always about battles

I like days like today.
I woke up feeling terrible and have felt very ill all day. (I know I'm definitely ill when I switch on my favourite video game, pick up the controller, groan and switch it all back off again!)
BUT... I have had a good day.
TAKE THAT illness! *pulls rude childish faces and blows raspberries*

I got to spend some all too rare time with my youngest sister who leads a hectic lifestyle in London as a freelance classical musician (french horn). She had stayed the night and I HAD intended to take her out for lunch.

I was most put out as I had been doing really well recently (relatively speaking) and was sure I would be well enough to do so. But after learning that pizza is apparently very expensive in London for some reason, I ordered some and we had a picnic in the garden followed by strawberries. She then went off to catch her train.

By then I felt far too ill to do anything at all, so slept and watched my fish tanks all afternoon. By evening I felt well enough to speak coherently with my friend who had come to visit. We had a good old chat before watching a couple of episodes from "Game of Thrones". We have both read the books so know the plot, but are really enjoying the series anyway. It is very well done.

I hope I will feel better tomorrow, but if I don't I have plenty of little short things I can think of to do even while feeling dreadful.

So there you have it. Today might have been considered a loss and a failure. I didn't manage to take my sister to the pub. I was incapacitated for the majority of the day. And let's face it, I felt like death warmed up!
But in fact I enjoyed my time with my sister anyway, had a wonderful lunch, some precious time outside the four walls of my flat and an enjoyable evening with my friend. I call that a win.

Had I tried to "battle on" and go to the pub one of two things would have happened:

1) I would have collapsed or had to come home early and caused a scene and great distress to my sister.

2) I would have "made it" but not enjoyed a minute of it and caused worry to both myself and my sister as we would both have been wondering if I was about to collapse.

Instead I was able to spend a relatively pleasant time with sister despite the fact that I wasn't feeling at all well. Neither of us was worried or concerned. We enjoyed our meal. We enjoyed our surroundings. 

Had I tried to "battle on" during the rest of the day and do things, I would not have been able to enjoy the evening with my friend and, from past experience, I know I would likely be very ill tomorrow. As it is there is every chance that I will recover. If not, well, at least I have given myself the best possible chance to do so.

I didn't manage to get much done today but, well... there IS a reason I'm on long term sick leave from work! Right now it means that if I have to put things off to tomorrow, or the next day, or the day after that, it usually isn't the end of the world.

I strongly believe that beating the illness isn't always about battling on and doing things despite it. I think it is about enjoying life even when feeling very ill and even when your plans have gone awry.

Half a life?

Musings about the half of my life since I became ill and disabled.

At the end of this week I will turn 34.
Coincidentally it is exactly 17 years to the day that I went into hospital with what was thought to be a "minor head injury" following an accident during a handball match. We now know that it was in fact either the trigger of my lupus or my first real nasty lupus flare, although, because it "pretended" to be MS it baffled doctors for quite a while and I didn't get diagnosed until 4 years later.

Whichever it was it marked the start of my illness and subsequent disability, a completely life changing event. I went from an active sport loving teenager just about to finish school to someone stuck alone at home hardly able to sit up.

A half life biography

Eventually as the illness fluctuated and the doctors did get a grip on things matters improved. I was able to go back to school and get my A levels. I went to university to do a chemistry degree. Unfortunately the illness  worsened dramatically at the end of my first year and I got kicked off the course for "health and safety" reasons. My doctors advised me to abandon university and return home. Knowing that if I did I would probably never leave again, I refused and instead started a maths course from scratch. This was a really good decision as I turned out to be talented and maths is something you can do from your bed!

The next few years were very hard. My illness and disabilities were increasing. I had to give up every single hobby and sport I used to do, even those I had relearned to do from a wheelchair, like archery, and the new hobbies I had started like playing the clarinet and saxophone. I needed care, deteriorated from walking stick to wheelchair, was often so ill I was in hospital and even when not, could rarely attend lectures. Despite all this I finished my degree, graduated top of my year and got a golden hello award with my funded PhD place.

My PhD years were really fun and are among my happiest memories despite being highly difficult physically with many new symptoms developing, such as epilepsy and a rapid deterioration of my muscle condition. I made some very good friends I think I will keep for life. One great memory is trundling down the aisle in my electric wheelchair as bridesmaid at my best friend's wedding! I was terrified I would roll over her veil!

My PhD was also successful. I published a very good paper and on the back of that obtained an all too rare EPSRC funded postdoctoral research fellowship at the end of my PhD. My illness was getting worse and worse so I went 75% part time so that I could manage. I "officially" worked for a further 5 years. However I was off sick for most of the last 2 and eventually went on to long term sick benefits. I held out until I sent off the last paper I was working on for publication. At this stage though my memory and concentration were so shot that often I didn't recognise my own work from one day to the next or remember conversations I'd had with colleagues. When you're trying do do international research, this is a slight issue! I'd also had a couple of serious health scares.

Despite my sadness at having to give up work, I'm very proud of the work I did. We published some excellent papers in our field and as a result the group in which I worked ballooned from just two doctors and two PhD students when I started my PhD to one which now comprises 10 permanent members, 2 research fellows and 7 PhD students.

After giving up work I kept busy looking after my little god daughter and doing various enjoyable hobbies before eventually getting involved in disability activism. This became very successful when I co-authored the Spartacus Report. This and other projects with We Are Sparacus, in particular "Past Caring", took a lot of my time last year before I eventually had to call it a day as my illness had continued to progress and I could no longer manage.

I'm now at a slight crossroads. I'm never bored as I still have many hobbies but am not sure of any long term goal and am unused not having one.

Half a life?

So I have now officially been ill for half my life and my entire adult life. When I first got sick I used to think of my life in two parts: pre and post illness. I felt I only lived properly for the first half. I wanted to get better so I could start "living" again. I've realised that I don't do that any more. I'm not sure when this stopped, although I think it was quite some time ago. I find it is no longer possible to try to imagine my life "if I hadn't got sick".

The illness made me come back to the UK from France where I was finishing school. It made me switch to mathematics in which I had a successful (albeit short) international academic career.  It meant I took a strong active role in some disability activism.  It did make me give up things I loved like sport, but it also meant I tried other things like archery, learning the clarinet and the saxophone and playing in a concert band. In time as the illness continued to progress I also had to give those up too, but those are experiences I might otherwise never had had.  On a personal level it has shaped the person I am. I have some wonderful friends and am godmother to a beautiful 4 year old. These would not be part of my life otherwise. There can be no going back.

That said I do still wish I wasn't ill right now. I don't mind the purely "disability" issues quite so much as there are usually ways round them. Getting round the illness is far harder. Being "healthy and disabled" and being "sick and disabled" are two extremely different things.
When I was less ill and closer to the former, there were still ways of working around my illness and having a job and an active social life outside my home. But at this stage of the illness I can see no way round it and my life has become far more limited in the past 2 years.

But all in all I am usually content and often happy. I have some good friends and supportive family. I am always busy even if I cannot move from the daybed in my lounge 95% of the time. I am always bemused when I hear people bemoan that they are bored!

I have had to radically change my activities and hobbies and my life today would be unrecognisable to that of the young 17 year old who was hurt 17 years ago. She would most probably be horrified. In fact if I remember correctly, before the accident she once blithely said that if she couldn't do sport she would want to die! But then she hasn't had the benefit of 17 years of living and adapting and inexplicably finding that life is incredibly enjoyable under circumstances that most people would outwardly judge are not. Which, incidentally, is why no one should EVER judge someone else's life.

Half a lifetime of being ill? Yes. Half a life? No. Not only have I done a lot while being ill but I have enjoyed life while I have done it. It has been one heck of a rollercoaster ride and I am willing to bet it will continue to be.
Right now I do feel at a bit of a crossroads and am still adapting to having stopped work. I feel I want to find some sort of long term goal and am very unsure of what I can do. But hey! So far things have had a habit of working out in the end. Bring it on. I'm not done yet.