Feeling Scared

I remember when my MS was first diagnosed feeling a little scared and all at sea. I was relieved in the first instance because I was sure I had a brain tumour. My next guess was that I would be paralysed. My initial symptoms of neck and back pain, loss of feeling down the left, dragging my leg and my face being numb and tingly didn't scare me too much until the doctor said I had to go straight to the hospital. I was imagining that I would be given some painkillers, be told to rest for a few weeks and then back to work. I had been having spells like this since my A' Level year including one really weird one where I started the day perfectly okay and ended it with severed pain and spasm in my right hip and groin. I could barely get off the bus when I reached home and then spent the evening crawling round the house instead.

Once everything had started to sink in I settled into my disability. I had to cast off the life I imagined I would have - a good job, a husband, and later on a family. Now I'm sort of glad I didn't have that life because in comparison to the one I have now it was really boring!

It took me almost a year to get my benefits organised, get a Motability car, finish working and integrating into the Kingdom of the Sick. I tried to continue working but every time I tried to do something I would end up back in hospital. I figured it was better for my health to be consistently off sick and stop the relapses happening. Every time I relapsed there was a danger of permanent damage and I didn't think it was worth the risk. I developed a good life. I would volunteer at my MS Centre, I started going to night school to train as a counsellor for others with MS and the rest of the time I tried to enjoy life. I met and made friends for life at the centre who helped me see things through 'spaz' eyes rather then 'normal' eyes. I had the further horrible experience of miscarrying several times and my marriage breaking down as my health and sadness worsened. I had Hughes Syndrome; a condition where the blood is too thick and is not able to cross the placenta to the baby. I grieved for my babies who never were for a long time and lavished attention on my niece and nephew who were born around this time.

In the aftermath I met my second husband Jerzy who had MS for many years before we met and was a full time wheelchair user. He was so incredibly full of life and we fell in love immediately. It was like a thunderbolt and we married almost immediately. I did my degree in Northampton, while we loved in Milton Keynes and I can honestly say I was never scared of anything with him in my corner. He used to look at problems as mere puzzles to sort out, because there was always a way round, under or over a problem. There were always solutions in his world and we had a brilliant life together. Even though his health was failing and he was told his MS was now primary progressive, we had fun and I don't think I have ever laughed more. When you are in a new relationship you are on your best behaviour for a while, wondering how much of the real you to let out. The advice people give friends as they set out on dates is be yourself and I was myself, just a quieter, more thoughtful version of me. Yet the beautiful thing about falling in love with Jez was that the more 'me' that came out, the more he seemed to love me. He thought I was the cat's pyjamas.

Losing Jez was probably the scariest thing I had to face, not just because I didn't want to be without him but because I was scared of how I was going to react. He died in May 2007 of complications with his MS - his brain stem became affected and he could not swallow properly so a lot of his food  went into his lings causing persistent aspiration pneumonia. Too make things worse the PEG tube they put into his stomach so we could feed directly into his stomach, was faulty and gave him peritonitis. This was the worst time of my life and with a hasty marriage a couple of years later that became an abusive relationship I have had an enormous amount to contend with. I had a few panic attacks but had counselling and once I was well, I have started a course that completes my training.

However, lately I have found myself increasingly scared of what the next day will bring. This is not just about the horrible life experiences I have gone through because I have done a lot of work on that and feel happy about where I am personally. It is more about the way people perceive me and how society feels about disability. Firstly there seems to be more and more emphasis on people who are 'faking' it and because I have an invisible disability I find myself questioned a lot. I have taken to using my stick and crutches even when I don't always need to because it is the only way I can get the help I need; it seems a visual aid is really important for people to accept I am disabled. I often feel scared of saying I receive benefits because of media perceptions of people who 'skive'. The recent discussion on Loose Women over a man on benefits who'd gambled and won an accumulator bet, was vicious. Every woman on the panel wanted him to pay the money back. It made me question how out of step with the world I was. I think telling people on benefits how to spend their money is only a few steps away from giving people tokens so they can only spend on food or only buy clothes from one shop.

I have now been disabled under several different governments and until this ConDem government came in I felt the same as other people. Yes I was disabled and yes some of my income was made up of benefits ( I worked a minimal amount of hours for the mental health team) but I could shop where everyone else shopped and it was okay to be visible. Now I'm scared to go out looking well in case someone sees me on this good day and reports me. My friend was recently queueing in shop and talking to the cashier about the disabled parking. He is a well dressed and well spoken person and he was buying a few good quality 'treats' for the weekend. A woman waiting behind started huffing and tutting as he was talking and then launched into a verbal assault mainly asking 'why should I subsidise you?' Instead of being able to justify himself by explaining that he pays tax like everyone else so actually he subsidises her choice of having children, he became tearful and hurried out without paying. What am I talking about??? He shouldn't have to justify his right to buy some expensive chocolate and smoked salmon for a weekend, just as she isn't compelled to explain her life choices. To be fair to the shop involved he was stopped a few days later by one of their workers who said he should report this because it was a hate crime. This type of attack is happening all too often though. I have friends who have been questioned over their choice of furniture or the supermarket they choose to shop in. I have personally been asked how I can afford my brand new car and in discussion with other disabled people I find they have been told the following:

'That's a nice car. Wouldn't mind a free one of those myself'.
'I'll have to get myself one of those disabilities'.
'My tax pays to keep you' and other variations along the same theme. Of course there are endless witty comebacks but after a while you just get tired. Hate crimes against disabled people are rising and I blame the rhetoric thrown about this government who categorise some of us as workers and some of us as shirkers. The insults and questions are mainly thrown about in ignorance. My friend from the supermarket not only pays tax but runs a scheme to support people with mental health problems and the money saved by keeping those people out of hospital because of his work far outweighs the cost of his benefit. I know other 'shirkers' who do tireless voluntary work, or who are unpaid carers for others or who try to do their permitted work. I also know that some of those people have been hauled in by the benefits agency because if they can work voluntarily that means they can work.
This morning I was a discussion on Facebook about ESA and the lack of consistency in the application of the benefit. Some had been given letters saying that because of their private pensions they would no longer be entitled to ESA. This amounts to losing £400+ of monthly income overnight. There was a lot of panic between people trying to work out how the rule applied and to whom. I was suddenly terrified. I have a pension from my late husband's work place and it has never had an effect on my ESA so far. But they were saying they'd had it for a year so that was the limit. It seemed there were different rules applied for contribution based and income related ESA. Also if you had been granted a pension before or after the new benefit came into force. Your level of DLA also affected the decision and whether you were in the support group or the work related group. My heart was racing and felt sick. What if I was about to lose my income? I would have to go to work and watch my MS progress. My imagination was working overtime imagining myself trying to get up every morning for work, with my aches and pains and fatigue. I could see me in a factory falling asleep over a production line or in a call centre snoring into my ear piece. Then I finally found the rule that applied to my benefits that meant my pension was not called into question. It was a strange quirk that I was on the right combination of circumstances and benefits in order for it to work out. I came off the laptop feeling sick, hot and as if my head was going to burst. My blood pressure must have been through the roof! I hadn't realised that I felt so scared about the changes and whether they would affect me. From feeling secure and an okay member of society I have become scared, not knowing from one day to the next how things will change and how I will be perceived. Some days I feel completely out of step with the world.