Pain Clinic Antics

Sometimes the NHS can be very frustrating. I hate to complain about an institution I depend on so heavily and believe in so strongly, but today I felt like a drain on the system and this time it wasn't my fault!

A couple of months ago I had some injections in my spine; 7 around my neck and 6 in my lower back on the right hand side. These injections comprised of cortizone and local anaesthetic make the rigid muscle relax, breaking the pattern of pain messages to the brain which then stops the need for the muscle to contract. This process of spasm and pain is a vicious circle that endlessly repeats causing chronic pain. I had my injections in May and after a few days recovery I found them really effective and felt almost normal.

Then a few weeks later I started to get muscle spasm in my back but this time on the left side. It was excruciating. Every time I moved it would grip me round the middle. Like someone giving me an inappropriate hug - right round my pelvis with a tazer! It was so bad after a couple of days I gave in and asked for help. Ringing the ward where I had my treatment was supposed to be the first port of call, but as I had found out in the past their advice ranges from ring an ambulance, to call your GP with an unspoken undertone of 'for god's sake don't come back here because we don't know what we're doing'. This time I got 'ring your GP' so I did that. My GP is great, she really listens and after a half hour on the phone we came to the conclusion that my discs weren't caving in and the priority was to get the pain controlled. She prescribed something called Acupan which is another nerve blocking painkiller like the other two I have. So someone went to fetch it for me and after 24 hours I was a lot more comfortable. The other thing she advised was to call the pain clinic just to ask if this was a normal reaction. It seemed obvious that it would be but still I made the call to the pain secretary and this is where the NHS became ridiculous.

The pain clinic secretaries work on a job share basis and not your common and garden job share; instead of simply sharing the work and communicating with each other they decided to split roles. So, one works in the morning but solely on sending letters out and the other works in the afternoon solely on making appointments. Its supposed to work like his: you telephone in the afternoon and get the appointments girl, she then makes you an appointment either in clinic or on the ward, she then emails the day's appointments to the morning girl, next morning secretary no 2 checks her emails and gets the appointments diary, she then sends out letters and information. It sort of sounds like it might work, but then you realise people don't slot neatly into morning or afternoon, or even into appointments and letters. If you ring in the morning to make an appointment woe betide you - you have to ring back in the afternoon if you can or rely on afternoon girl to check her emails and make you an appointment. Or you ring in the afternoon but can never get through because everyone has clocked the system and ring all at once. I confounded the system by managing to get through on appointments afternoon but by not wanting an appointment.

I explained that I wanted to ring for some advice and explained what had happened. The girl seemed completely baffled:

'So you want an appointment?' I explained again that I just needed some advice. I thought there must be some system of getting queries to the actual doctors.

'I don't want to waste their time with an appointment if its something simple'. I told her 'What if I ring within clinic hours? Can I get a message to a doctor then?'

'No, but I can give you an appointment', she said. She was tenacious. In the end I relented because I thought if I had a fast track appointment it would be all done and sorted for my new treatment appointment in September. I just had to keep taking the Acupan and hold on till then. The appointment came through a few days later and it was for two weeks before my ward appointment. I didn't know whether to keep it or wait, but experience told me that whether you were listened to on the ward depended very much on who was dishing out the treatment. If it was the pain consultant or his registrar that was good, but if one of the anaesthetists was subbing for them they had needles in you before they said hello!

Yesterday I went for my appointment and met with the registrar and more madness ensued.

'Why are we seeing you again? You were here in May' he said

'Yes I was on the ward in May then I had some problems so i rang for some advice and the secretary kept insisting I needed an appointment'. He turned back to my notes and rustled through a few pages. He showed me a discharge notice.

'You have seen this?' He was pointing at a line on the summary that said 'assessment and treatment'. I nodded.
'And you understand this?' he asked 'it means when you come to the ward you are assessed there not in clinic'.
'I get that, but two weeks after the treatment I was really struggling and I tried to ask for advice over the phone but that wasn't possible. She kept saying I needed an appointment'.

'Here it says to ring the ward', he pointed to another line on the page. I started to get a little bit cross.

'I understand you think I have wasted your time but have you ever tried ringing the ward? I have done it twice in the last four years only be told they couldn't do anything or didn't know what to do. Once I ended up as an emergency admission in hospital and this time they told me to ring my GP. As for assessment that depends very much which consultant you get. Some of them have a needle in you before you've had chance to tell them anything. An assessment to some consists of 'did it work' as they're setting up an IV and doing the actual treatment. They're not listening.'

The registrar put down his pen and turned to face me.

'You are never, ever wasting my time. It is no problem to me that you are here, but you have come a long way. I am worried that you are telling me these things but telling them to me makes no difference. I could tell the consultant now and he would make enquiries but nothing would happen, but if you from outside makes a complaint about these things then something is done. Make a complaint. This is not good enough'.

As he started to look at my back I was completely baffled by the whole experience. They have a problem with part of their service, and instead of keeping quiet and dealing it they now want me to complain about it? This problem has cost whatever the original treatment cost, then with GP time and the costs of a new drug for 6 months. It also cost ward time on the phone, admin time on the phone, then an appointment of at least 30 minutes with a consultant where I was told the following;

• the reaction you had was completely normal and could have been solved in a phone call

He examined my back anyway and concluded that no wonder I was in pain the left side of my spine is rigid! He then told me a long involved story about a dog, some fleas and a big stick which apparently was a metaphor explaining that the right side of my back is worse and caused greater pain so when it was resolved I then felt the lesser pain in my left side. He also checked out the trapezium muscle and decided that needs work too. In 30 minutes I talked myself into 20 spine injections for next time! I could have saved hundreds if not thousands if anyone in this chain had decided to do more than the minimum requirements of their job. They were all so focused on their little bit they were missing the bigger picture. 

After that it became my usual fun appointment. He was very reassuring about my pain, because sometimes its easy to think it's all in my head. He explained what my muscles were doing and seemed very positive about the results and since the injections had removed the right sided pain, it does seem likely. Then he seemed to scratch his elbow and it was bleeding. He then called a nurse and shouted that I had bitten him and needed first aid (don't think this is weird, this is normal for my clinic)! After he had first aid he reassured me that they would listen and have a proper assessment before the injections and would basically inject wherever I told them. Then he apologised for people wasting my time and handed me all my things, but wanted to keep my new tweed handbag because it was fabulous! Another day another appointment I guess.

Struggling with Dependency

Ever since my MS diagnosis in 1995 I have had to struggle with periods of dependence. My very first hospital stay when I received my diagnosis was for a fortnight and I arrived looking like I’d had a mild stroke. My notes read ‘Hayley is very keen on keeping her independence and has high standards of hygiene and appearance which she should be encouraged to continue’. It was strange to see someone assess and describe me in that way. I had always assumed everyone was concerned about their personal appearance and independence. I started to re-evaluate what I thought about me, but also about how I saw other people.

I have always submitted to different degrees of dependency when I needed to. I hate taking help in the bath or the shower but sometimes my illness has made it necessary. I’m not very good at being naked with other people in that context, probably because I am vulnerable and haven’t made the choice personally. Usually others have made the choice for me because of risk or I have been worn down enough by pain or stiffness to have to accept. It does not come easily and I would rather take a small risk here and there. This need for independence has led to falls: I fell in the bathroom and hit my head on a radiator, I fell down a flight of stairs and broke my collar bone and I fell when walking the dogs and dislocated my ankle.

The one thing that is very important to me is my driving. I am lucky to be using the Motability scheme so have a lovely car to zip around in. I grew up so far into the country that the only option was to drive or stay home. There was no public transport and it was too far to walk anywhere. It took me 3 tests to pass my test and I was never the most confident of drivers until I moved to Milton Keynes. This was a huge test of my driving ability because I was moving to the town of roundabouts from a market town that didn’t even have one when I passed my driving test. In order to get to university I had to take the M1 every morning and drivers were so aggressive. I soon grew in confidence and started to love driving. When I moved back to my home town we had a Kangoo which is a specially adapted van that my husband could wheel straight into. We explored all over, from Colchester to Ambleside to North Wales as we tried to cram a lot into his last years of life.

I knew I could never be without a car when a few years and one husband later we bought a huge Nissan truck as our joint vehicle. We were living in the country, at the top of a hill that would need four wheel drives through the winter. I gamely drove the truck for weeks having traded in my Toyota Yaris for it and being determined to master it. It was tough to park and get around the more medieval parts of town, but worse than that there were days when my husband used it and I was at home with no way of getting out and about. This may seem normal to some people who had this arrangement all the time, but for me it was hugely difficult. I had never been without a car sitting outside the house waiting to be used. My husband said I was spoiled and he was probably right, but I became miserable and depressed because I felt trapped. I don’t know whether it was a case of what I used to or a more psychological reaction to offset the trapped feeling my illness gave me. Eventually we caved in and I had a little second hand VW Beetle to potter in and now I have a new one on Motability because a little bit of money set aside helped I afford a down payment for the car I really wanted.

Lately I have been struggling with my driving. I can pop about locally quite easily on good days, but I have been noticing small changes. No matter how much I change my driving position it seems to impact on my right leg and lower back, I cannot drive at all when fatigued and certain medications make driving impossible. I have been building up to driving longer distances again and seem to have mastered the 60 mile round trip for my counselling supervision once a month. My other work is only 20 minutes away along with college so I am not being stretched as much as I might be. Then going on holiday came up.

It had been planned that we would have a family holiday in August in North Wales where we always went as children. We had a very successful holiday last November and decided we should try it again. It was assumed we would all arrive in separate cars so we could go our own way and do what we liked. Yet, as time drew nearer I had not had chance or a long enough period of good health to practice driving. A couple of weeks before I had driven to supervision as normal but then came home and slept for three hours in the afternoon. It seemed excessive for such a short drive but simply could not keep my eyes open. I was fighting my eyelids while trying to type up notes and kept experiencing double vision. One of my knees was very swollen and had been aggravated by the drive and I had pain from my lower back down to my right knee and through my heel. I chatted with a friend who was coming with us, a fellow MS patient, and although we had agreed to share the driving we were both worried about sustaining our concentration on the long 4 hour journey. We felt that if we drove there we would not be fit for a couple of days to do anything. My brother had spaces come up in his car so we agreed to pay for petrol if he drove.

For the last fortnight we talked ourselves into the idea because the cottage was at the edge of a seaside town so we could walk everywhere and only go further afield if invited by the others. We were taking a bag of sewing, sketchbooks and colouring books to keep us occupied as well as a fully charged and bolstered Kindle each. However, the journey still exhausted both of us being closer to six hours and a very warm day. We arrived feeling dehydrated and floppy. The holiday was good but I really felt the restriction of not having my own car. On previous holidays my friend and I would zip around little seaside villages and pubs or restaurants for tea. We didn’t always go out every day but at least could make our own choices. I was chafing badly at being dependent on someone else for a whole week. I realised how much I liked zipping around under my own steam. I decided when I wanted to leave the house; I decided where to go and when it was time to go home. Now we were both dependent on others to negotiate who was leaving and who would look after the dogs, or we would be dropped off somewhere for a few hours until we could be picked up. I love the holidays I have with my friends where we can go to the beach with the dog and then decide whether to have lunch somewhere or vegetate back at the cottage with a great book. Having very little say brought home to me how much I value my independence and what a huge loss it would be to me to lose my ability to drive.

This has been a good experience because it made me think about my priorities. I want to participate in the world and not be hidden away all the time so I have to prioritise and make this possible into the future. I have to think about what I need to make this happen. It made me realise I need to focus my money on experiences rather than things so that’s a change I need to make in my spending habits. When I am asked by the rehab team what I need from them, I have to ask for what I need to access my favourite things like the theatre, galleries, and concerts. I need to use my wheelchair more and book assistance every time I go somewhere further afield whereas now I might just go for it and hope I cope. I need to accept that I am at that stage of my illness where my life will change again but that does not always have to be bad. I need to employ the state of mind that my late husband Jez had – instead of looking at a wheelchair as giving in he saw it as a tool to make him more independent. I need to stop thinking that I’m giving in and accept that I am carrying on – whatever it takes to get there

A Crip Trip to London - Part 2

I used to be a huge fan of the show Kids from Fame. I had the albums and the legwarmers! I used to pirouette around the house with all the grace of an elephant imaging myself winning a place at the New York School for Performing Arts. There was a line at the beginning of the song Fame spoken by dance teacher Lydia played by Debbie Allen that said something along the lines of 'this is where you start paying in sweat'. Well I got back from my trip to London two days ago and I'm paying in pretty much the same way.

I have several medications now that I have to be very careful with. I have a controlled release morphine drug, a pre-gablin 300mg, and amitriptyline. If I miss my amitriptyline I don't sleep at all. If I miss pre-gablin it only takes about 2-3 hours for the black dog to descend and everything that looked rosy when I first woke up soon looks bleak and difficult. If I start sweating the culprit is usually morphine; either I have taken it later than the 12 hour window or I have taken too much. As far as I am aware I have taken everything on time, even when in London, so it seems unlikely but I have certainly been sweating. It only takes the slightest thing to set me off when this starts happening. Usually I take the meds and then until the next dose puts me back on course I start to feel sick, and then the sweating starts. I get hot and the heat whooshes from my chest right up my face into my scalp. Then the roots of my hair prickle and start to get damp. This feels weird because I become aware of cold air around my head as my scalp sizzles. Then the hair at the nape of my neck becomes wet and then slowly drips down to my shoulders. It pisses me off because my hair starts to curl weirdly and looks all damp at the ends. My face is usually red and I have to sit down until I cool. All I can do is drink water, sit in the shade or indoors, fan myself and wait for it to pass.

The lobby of the V and A

The first sweat started at the V and A on Wednesday. We were booked in for two exhibitions: Italian Fashion in the morning and Wedding Dresses in the afternoon. In between we went for lunch at the cafe, but as we stepped through the doors the temperature was ridiculous. I couldn't understand how people were eating in the heat - inexplicably some were eating soup!! Outside seemed even worse. Sunshine everywhere and not a square foot of grass free to sit in. We decided on indoors in the coolest corner we could find and I bought a cool can of coke with my lunch just to put on the nape of my neck. It worked but all afternoon I could feel the sweating creeping up on me again unless I sat down from time to time. This was difficult because there was nowhere to sit in the whole of the downstairs section apart from a two foot long bench in front of a film of royal weddings that was constantly occupied by OAPs who were not going to give a seat to a fairly healthy looking, but sweaty, 40 year old woman. Upstairs we had better luck, but all the way through shopping I could feel my hair dripping and I was desperate to go back to the hotel and get a shower. I felt completely grubby. That night all we could do was get a cool shower, put clean PJs on and go straight to bed. I was asleep by 9pm and only woke at 11pm to take my tablets.

On Thursday we visited the National Gallery to see the Virginia Woolf exhibition which I loved. We browsed the shop and then decided to spend the rest of our day at Liberty's before returning to the station for our 6pm train. Thinking Liberty's was only a short walk from the NPG we set off working on the side of the road in shade, through Leicester Square and through some back streets over to Carnaby Street and in the back entrance of the store. This turned out to be further than we remembered, with a lot of sunshine and my feet seemed to be swelling all the time. I was so tired I was tripping on kerbs and cobblestones. I could feel the ankle strap on my shoe digging in but we kept going. At the store we headed straight for the cafe and spent some time enjoying their pink lemonade and having a cheese board. I felt a little recovered from the walk, but had the same feeling of damp hair. I didn't dare touch it because I knew from experience that only made things worse. After a little spree in the haberdashery we got a taxi back to the hotel and on to the station. Usually we book assistance for trips and report to the information desk to have our bags carried and a porter see us on to the train before anyone else. This may seem a little bit precious but people have no scruples when running for a train and having been trampled before I know my limits. This time though, for some daft reason, we hadn't bothered. We'd booked the tickets in a bit of a hurry because there was a really cheap fare on a website and we wanted to take advantage. As the booking went on there was no place to ask for assistance and I thought we could maybe ring after the fact but it didn't happen. We were on our own.

Tea at The Sanderson

Sometimes, using a bit of charm and flashing a disabled railcard can get them to tell you which platform the train will be going from so you can get there early. For some reason they were messing with the platforms and he couldn't tell us. We sat in some chairs and had forty winks and then went back. They only gave us 3 minutes notice to get to the train and not being able to run we were struggling to even catch the train, never mind get there early. We realised that if we didn't get on the train we would be left behind so we jumped on where we were, struggling with our luggage and decided to get to our reserved seats on board. After travelling through coach F the train began to move sending me onto a strange man's lap (this is better than the time I sat on a man's head - see other blogs). We were meant to be in coach B and passed an uncomfortable time dragging our cases behind us in a packed and sweaty train for several more carriages. It was so hot that the sweating began again, both the normal stuff and the new, horrible kind and my hair was wet. Then we reached coach C just as the guard announced that they were sorry but the air conditioning had broken down in C and they would be giving out free water. This meant that every other carriage was packed full and that someone would be in our seats. We finally reached them and negotiated with the people in them. I had found a few square inches of space in the luggage rack for my case and abandoned it a carriage away. Sadly Mandy's ( the bigger one) was still with us and we had to lift it into the overhead rack that took a lot of effort and muscle strength. With spaghetti arms we wedged ourselves into our seats and I fell asleep again.

Three hours later we were letting ourselves into Mandy's flat. I felt exhausted and grubby because I'd been wet through several times and had dried again. My legs and feet were throbbing and I had no strength at all in my arms. I took off my shoes and noticed one foot much bigger than the other with large red marks round my ankles and what looked like a large circular bruise on my heel. It was red and blue, with a white centre and looked extremely angry. I was very surprised to find it was a pressure area. My feet had swollen so much and pressed against my shoe. After a few days with my feet up it subsided.

Yet, I am still feeling the after effects of the trip. This week I had a fairly quiet weekend crafting with friends and then saw a client Monday morning and I was exhausted. I fell asleep for 3 hours. Then Tuesday night I slept for 13 hours and woke up at 1pm! I used to be able to offset my illness after a trip with how fab it was to be there. Although the trip was fabulous, I'm not sure it was worth feeling this poorly. I have to find a different way of taking trips like this so that the weeks afterward are not so difficult. The problem is that once you start adding carers into the mix it becomes very expensive. So far I know to always book assistance, take enough money for cabs and don't try to walk anywhere. I shouldn't go in the middle of summer so maybe restrict visits to the cooler months and really try to stay off my feet as much as possible. I will get there, because I have so many things on the bucket list to do! For now I'm having a restful week with family, full of reading and lounging and hopefully will regain a bit of energy.

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.

When Did I Lose My Rights?

My friend asked me a question the other day. On Loose Women there was a debate over a man on benefits who had spent £250 on a spot the ball competition and won, both the cash prize and an expensive car. Apparently the debate was whether he should give back the money or not? I’m so out of touch with popular opinion that I couldn't even understand the question I was being asked. I was confused and then angry when my friend told me that the entire panel and most of the audience felt that this man should not have been able to have this prize.

I understand that by winning a large cash prize the man was no longer eligible for benefits and that is only fair, but I couldn't understand why he shouldn't be able to enter a competition or win. Apparently, it was felt that he shouldn't have been able to enter, because he was on benefits. Since the panel and all those virtuous audience members were working to fund his benefits they felt they could tell him how he could spend his benefits money.

I would like to come out here as a benefit claimant. I claim a certain amount of benefits because of my disability – some ESA and some DLA – but I also have a small pension. My pension comes from my late husband’s job at the Open University and is just enough to mean I pay income tax. I pay income tax at about the same rate that I get ESA. They offset each other. So, I guess I’m in a very unique position. I claim benefits and I pay tax. I just wondered when it was that benefit claimants lost all their rights? We seem to have come to a place where admitting to claiming money from the state, even if you are entitled to claim and legitimately disabled, is a dangerous thing.  On Saturday my friend and I were in a local department store, indulging in some retail therapy after some nasty spine injections. We were asked at the counter if we wanted a premier card for the store; a new credit and loyalty card they’d brought in. We politely declined and explained we were just indulging after clearing out the wardrobe on Ebay. They still pushed the point until we explained we didn't think we had enough income to qualify. She asked if we were on benefits and my friend actually hesitated before replying, because she didn't want to be judged. This is where the recent government and media rhetoric about benefits has gone too far.

If I get benefits does that mean someone else can judge me or tell me how to spend them? Yes, there are a certain amount of fraudsters out there, but the way the recession has been blamed on people like me is disgusting. The proportion of the welfare budget spent on disability benefits is small compared to pensions and the proportion of benefit fraud is also smaller than you would think. Last year I saw a headline in the Express that almost made my foam at the mouth: ‘Disability claimants given brand new BMWs’. Anyone who understands the Motability scheme knows that nobody is given anything; the DLA claimant pays a deposit and then surrenders their monthly benefit in order to hire a car along with insurance and maintenance. Sometimes the deposit is as much as £2000 for certain cars and I’m sure the BMW would have required this sort of deposit.  What people don’t know is that in order to have a lot of modifications such as hand controls, or wheelchair positions for driving, the claimant has to come up with even more money or wait for an application to go through the Motability charity.

Nothing comes for free where disability is concerned. My husband was given wheelchair vouchers totalling £600, when every wheelchair ever needed cost over £1000. He tried to work as long as possible so despite having a long list of drug requirements he was ineligible for free prescriptions as he didn’t claim a means tested benefit and had MS which isn't an exempt condition where prescriptions are concerned. When he gave up work because he was too sick to carry on, and got a pension worth half his monthly salary he was suddenly slammed with a care bill for over £700 per month; earned wages were exempt from care calculations, but pensions were fair game. When people talk to me about equipment, cars and money being given it is open season as far as I’m concerned – out comes the soap box and off I go!

In my opinion, people on benefits do not have to answer to anybody when spending their money. I don’t expect anyone to answer to me on how they spend their money. Yes of course there is the debate over people spending money on cigarettes, or drink when their children are being neglected but surely the issue there is child abuse or neglect not how they spend their money? Are we coming to the point where instead of benefits people will be given tokens so they have to spend them in certain stores? They would be banned from using them on things other ‘work hard and get on’ people find objectionable. This, for me, would be leaving the way open to those who object to disabled people living independently (how would we control their spending or the way they live?), driving cars that look like everyone else’s (surely they should all have invacars because they’re cheap and identifiable), and even having children (how will they look after them and what if they pass on their disability cooties?). I might object to the fact that the Queen hurried back from her duties to put some money on the Derby – what if she did win and should she give back her winnings considering she is funded by the state?

I do not defend people being on benefits for a lifestyle choice, but I’m not sure that there are many of those people out there, certainly not as many as the newspapers would have us believe. Even as I write this there has been another advert for a series on Channel 5 with the voice over - ‘welcome to the full-time job of living off the state’. We need to see this for what it is. Propaganda and TV producers wanting to create controversy and ratings; if they can get their program debated on The Wright Stuff tomorrow morning so much the better. Not all of us have the chances or the talent of some of the presenters on such shows as this and Loose Women mentioned earlier. I want people to think beyond the headlines and learn what it really is like to live on benefits. The man in the original story may well have been a gambling addict in which case he got lucky, this time. He might have decided to spend a week’s money on the competition because he was so sure he had the correct place and felt he could live on beans for a week. In the end, for me, it was his choice and his win. When we start taking away people’s choices we have become a society I don’t want to live in.