A Crip Trip to London Part 1

My friend and I decided to take a trip to London for some exhibitions. We usually do this in the summer but this time we decided to stay for a few days and spread everything out. Four exhibitions over three days seemed doable but I have recently struggled with my back and already cancelled a holiday to Cornwall so it was a bit touch and go. One thing we forgot to do was book assistance. Usually we book a ticket with East Midlands but this time it was cheaper to go with the Trainline so there was no button to book assistance. We meant to ring East Midlands to see if we could book anyway, but the weeks went past quickly and we forgot all about it until it was too late.

We reached London without too much incident, bar a very late train and almost missing our connection. We had been standing around for over half an hour on the station and this tired us out. At King’s Cross we reached the taxi queue and instead of queuing in 4 lanes like they were supposed too, people were all in one line in lane 4 causing traffic chaos outside the station as cabs queued into the normal carriageway. If people queue in 4 lanes, cabs can do 4 pick-ups at once reducing disruption on the road and time queuing. We stood in lane 1 and asked if anyone wanted to come across because they could use all 4 lanes. No one said anything and just stared at us. We even said we couldn't queue for a long time because we were disabled but nothing, so we just stood at the front of lane 1 and took a cab at the same time as queue 4. Then people wanted to speak and one old man started yelling that we were taking his cab. He was elderly, very well dressed and looked a bit ‘well to do’. He shouted ‘fat bitch’ at me and my friend shouted ‘HOW RUDE!’ in a really loud voice as we took off in the cab. The cab driver was great he told us not to worry because nobody uses it properly and it just causes confusion. Knowing that we were using it in the right way and had offered people the chance to join us still didn't stop the shock at being name called. I've written a lot about fat before so it doesn't really bother me as an insult; still no one likes being called names in public!

After checking-in we went off to Tate Modern to see the Matisse exhibition. This was my friend’s treat and she was really enjoying herself, but these exhibitions are difficult. They are held in vast spaces with very few sitting areas, usually filled with people sketching or elderly people resting. We noticed a few people with fold out stools and realised they would be a great addition to our kit! The interesting thing about the exhibit was that it was on Matisse’s cut-outs, a phase of his work where he was using a wheelchair. The smaller cuttings were easy enough to do but for the larger pieces he had to employ ingenious techniques such as using the walls of his house as a canvas by sticking things up there using a long stick or brush. Eventually he had two assistants helping him and just told them where to place the pieces. It was an interesting lesson in how someone could continue their life’s work despite disability. The tendency to capture fluidity and motion in his work was a stark contrast to his own stiffness and immobility.

We followed this bit of culture with a special tea at The Sanderson, a hotel we've never been to before. I have to add that all of this travelling to and from has to be done in cabs. Both of us suffer vertigo on the underground, beside which it is so busy and we can’t stand, as well as the fact that in the summer it is far too hot down there to cope with. This adds up quickly so any saving for these trips has to take cabs into account. The tea was a Mad Hatter’s Tea, but we were a little early so first we were taken to the bar to have a cocktail. The bar was a big island in the middle of the room with tall bar stools that had a heavily made up eye on the back of them. I figured that if I could just use my good leg to push off and put my bad leg on the spells I would be okay. Yet I realised half way through the manoeuvre that I don’t actually have a good leg and the leg on the spell would be the one pushing. No amount of swapping legs would do and I had to think out the manoeuvre way more than should be necessary. All my efforts only succeeded in pushing my bum in the air and stomach on the seat! On a last precarious attempt I had to trust that the bar stool would stay in one place and I heaved myself up using my arms to lean on the bar and just hope it got my bum high enough to reach the stool. Luckily it did, just, and then I had to do a shuffle backwards. The only problem with this was that I was now a good foot away from the bar, so I had to wobble backwards and forwards moving the stool to the bar an inch at a time to prevent me falling off the edge. Dawn French could not have done it better! A quick look around soon showed me that this was a place for business men and beautiful, young women with hair down to their bottoms and no hair anywhere else. They were immaculately groomed and could actually sit down onto a bar stool rather than having to climb it in a fashion that would suggest we were being asked to climb Everest. This was not a place for slightly tired, 40 somethings who were a little bit sweaty after a three hour journey and two cab rides with a long art exhibition in between. We consoled ourselves with a very strong cocktail and a game of pick out the prostitute (the one with a man twice her age, too well turned out for the afternoon, who only drank half a glass of champagne before disappearing upstairs for 45 minutes then leaving again).

The Mad Hatter’s Tea was marvellous. We sat out in the open air under huge umbrellas with a little water garden and candles behind us. We were presented with a tray holding four ornate glass bottles that we were invited to sniff and choose our tea. The tea was served in a Red Queen tea pot with matching milk jug and sugar in a small girl’s jewelry box including tiny ballerina. The menu was pasted inside an antique book and we were served with tiny rolled sandwiches, mini savoury tarts and scones, miniature fruit scones with jam and cream, then a tiny ‘drink me’ bottle complete with straw containing a mango and passion fruit drink. The confectionery looked adorable; there was a tick-tock Victoria Sponge, a mini Chocolate teacup filled with white chocolate mousse and flowers, then a cheesecake with an amazing rainbow striped white chocolate covering, plus marshmallow toadstools and meringue carrots served with pea shoots. It was very fantastical, and the staff could not do enough to help us. We took our leftovers back to the hotel and finished tea in our pyjamas because we were so tired from the long day. It was an experience not to be missed – apart from their bar stools!

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.

Rests, Relapses and Restarts

      There are some MS days where there are little blips that require rest. These are often the body reminding you that you need to slow down a bit or in a really long spell of being well they are the tiny reminders. It’s the MS saying ‘don’t forget me, I’m still here’. They often require a rest day where you simply flake out in front of the TV or in bed with a book and just do nothing. In my case they can manifest as a really fuzzy and heavy head. It’s almost as if my head is too heavy for my tiny stalk of a neck and I need a cushion right behind my head. Sometimes they’re a full blown migraine that requires bed, darkness and quiet for me to fully recover. They’re those niggling little symptoms that resurface here and there; a few pins and needles in the toes and fingers, a patch of numb skin on my left leg or a little bit of foot drop for 24 hours.

    These little rest reminders are very different from relapses. I average about 2-3 relapses a year these days. One often occurs around the start of spring just as temperatures start to change. Another one happens around the autumn and the start of new terms which has always been a real pain when at college or university. The third one is the surprise relapse that can occur at any time; I am currently in an unexpected bad patch that came very quickly on the heels of my recovery from spring. About two weeks ago I woke up on a sunny Sunday morning with sudden unexplained pain in the left side of my lumbar spine. This is opposite to my usual side and came soon after having spinal injections on the right side of my lumbar spine as well as my neck and right shoulder. Most of my weakness manifests on the left of my body whereas my pain seems to be on the right side. My joints ache on the right side as well as my spine. I had the injections and then had 48 hours of agony as the anesthetic wore off and the cortisone kicked in and then I started to feel better. I started to tentatively get up and walk the dog round the block. I had started, as I said in my last blog post, to feel ‘normal’. I actually had a few days where I threw the covers back in the morning and got up feeling okay. Then came the reminder.

     The left sided pain very difficult to describe because it was almost like a hug of pain. It came from my lumbar spine but was radiating round to my pelvis at the front. It felt like I was in a painful chastity belt that restricted my movement and squished my internal organs. My first thought was that I had a UTI (that’s a urinary tract infection for the uninitiated into the kingdom of the sick), but we ruled that out. Then I wondered if there was a problem with my bowels. I talked to the GP and we ruled that out. I couldn't pick up my left foot, or flex it without sparks of agony. I couldn't bend over, or reach for anything without waves of pain constricting me. The GP diagnosed nerve pain, and suggested maybe I was trapping a nerve in my lumbar spine. She recommended rest and a new drug called Acupan which was a nerve blocker and I could take it with my other drugs. It turned out that I could take it with my other drugs, but only if I wanted to spend the entire day sleeping. To be honest for the first few days that was what I did. I still supplemented the drugs with the only other thing that works in these circumstances – heat. I couldn't get down into the bath so we got the hot water bottles back out and started to use 3 of them to get to all areas of pain. So, it was some of the best weather all year, beautifully sunny and dry and I am in bed, in pyjamas with three hot water bottles! This turned out to be a very stupid idea when I feel asleep and sustained a huge burn across my left bum cheek from a hot water bottle that had slipped and exposed a bit of bare rubber directly to my skin.

     I missed yet another holiday. I was gutted because I was all paid up, going with friends and I hadn't been to Cornwall since Christmas 2012. Here I was stuck at home and they were sitting on the beach, visiting the Tate at St. Ives and exploring the little gift shops in Mousehole. I was grumpy. In the thick of it I needed help to sit up in bed, take tablets, eat and drink. I needed reminded when it was time for more liquid or medication because I wasn't with it. Mum had to help me have a bath at one point in as dignified fashion as we could manage. This had now become so much more than a need to rest; it was a full blown relapse. I was exhausted, unable to concentrate, struggling to walk and struggling to use the loo at some points when the pain was very intense. Gradually the Acupan started to work and I felt more able to take only one during the day so that I could be awake for some of it and enjoy some reading or TV. I still needed someone in the house at all times, but I could enjoy things again whether it was an interiors magazine or my favourite soap. Towards the end of last week I’d started to feel well enough to be on my own for some of the time. I could walk to the loo, and to the kitchen to fetch a drink or snack. I couldn't stand for more than ten minutes but at least it gave me gaps to get off my couch and try it out. The recovery had now been three weeks which is unusual for me. My GP recommended an MRI and talking to the pain clinic to get an opinion and maybe a referral, so I contacted them for an emergency appointment. I had injections booked in for September, but needed to talk to them before them. I asked for an emergency appointment and explained that I couldn't walk or stand for any length of time. The clinic appointment arrived in the post the next day, but it was for the last week in August, only one week before I’m going in anyway.

      Now I am facing the fact that I am going to be like this for the rest of the summer. My friend took me out for some fresh air in the wheelchair and although it felt nice to be outdoors it was weird to have someone pushing me around. Although the chair is lightweight I haven’t got the strength to push it myself and there is no way I could fold it and lift it into the car. I am never going to be independent in this chair. So, I now have to accept that unless I am driving door to door, someone is going to have to push me. This is where MS and all other invisible illnesses are awkward and difficult. If you have an accident and suffer a spinal injury you go to a spinal injuries unit where after a period of recovery, you are taught how to use your wheelchair. All the skills of living in this new way are taught before you even leave hospital. If you have MS there is no such help. There is a rehabilitation department at most hospitals and they will provide a chair, but training you how to use it is not provided. No one ever says to you that it is time to start using a chair. It is a lonely and difficult decision and although spurred on by my late husband’s idea that I should look at these things as a tool for independence rather than a backward step. I get that, but still I would love someone to talk to me about what the best thing to do is. I usually know when the need to rest has tipped over and become a relapse. Yet, when does a relapse just become a new level of being?

     

I got to thinking, how would I manage if this is what I’m like now and how do I know? I could be perfectly well tomorrow, or I could still be like this – able to walk a little way, but unable to stand or sit in uncomfortable places. This could be the next phase of my MS journey and if it is I can see myself getting very grumpy, very quickly. I have had to cut so much out of my life and I don’t know how much I’m going to be able to claw back. I am in the position of having to physically take one day at a time. I keep hoping that this is a long relapse and that one day I will suddenly feel better and have a restart, but I am also starting to think that this is it for now. It will take me some time to get used to this difference in ability and my new body image, but I’m sure I’ll get there.