Feeling the Fear

L.S. Lowry The Cripples

I have tried to keep away from the political as much as possible. Of course I know politics is everybody's business and I know only too well how much it affects my life, but in the run-up to a General Election I pick and choose where I receive my information. I am happy to read manifestos, read newspapers and check out blogs but that's where I draw the line. I hate the petty and pathetic arguing of PMQs and all the braying, name-calling and school-yard taunting of the House of Commons. I won't watch the TV debates because they always degenerate into nit-picking rows about issues that mean nothing to me. Is it only me, or are none of the parties being specific about or standing up for the disabled people of this country?

I notice that in the last couple of days the Labour Party have produced a disability manifesto, probably due to questions like mine being asked as they travel round the country. It does address some issues, but not the most important question of whether our income will remain the same. Living on a fixed income is difficult enough but with Conservative Party plans to roll out Universal Credit despite knowing that it will hit disabled couples hard - in some cases to the tune of a £300 loss - as they lose their premium for caring for each other. We already know about and can feel the differences of ESA and PIP, especially those sneaky little changes such as lowering the distance you can walk before benefit kicks in, and removing the word pain from the mobility section - I have been told that as long as I can walk the distance specified that means I lose benefit, whether I walk that distance in agonising pain or not. I am also aware that the cuts mean there are less CAB staff and voluntary sector workers to help disabled people with complicated forms meaning those less informed are more likely to lose benefit.

The news last week that Tory think tanks were considering such measures as removing Carer's Allowance and Contribution Based ESA were terrifying for some. In my usual post at the centre for MS in my local city members were downcast and frightened. A group sat around discussing what these measures would mean for them. Certainly for me, losing my contribution based ESA would mean losing income of £400+ per month - these are not small figures. Taking away someone's right to claim carer's allowance for me means I would have to pay someone from my PIP to clean my house and help with care. So what would I use to pay my bills? Others were concerned about the carer's allowance they currently claim to look after their spouse - many in Lincolnshire have been hit unfairly by the council's application of Bedroom Tax legislation where if you sleep in separate rooms because of your disability you will still be charged for the second bedroom. Of course you can fill in a six page form to apply for their discretionary fund but this fund is based on income - you have to show not only income but the breakdown of your household expenditure so that some official can decide how you should be spending your money. I know couples who had their application to the discretionary fund turned down because they 'earned too much'. My understanding of the bedroom tax was that it was applied to those people with more room than they needed, not for those who need the extra room and have extra benefit due to a disability. Not even showing officials around your living space works to prove you have no extra room, because according to our council it is not about room it is about money and they are counting DLA/PIP as extra income.

I am scared about my future now. I know I will never be able to work full time and I know I will always have MS. I imagine a future of having no disposable income with which to enjoy my life. It is a feeling of being slowly pushed back indoors where we 'ought to be'. I have always been very creative with my cash, making sure I save for future trips like my recent one to Venice. Part of my recovery after relapsing has always been having something to look forward to. If these cuts proceed as planned then there will be nothing to look forward to. I love seeing other people with disabilities around, enjoying life and becoming part of society. This government has made sure we are not part of society by looking down on us, insulting us, making others suspicious and even jealous of us. A friend asked for help carrying his groceries out to the car at a local supermarket. He is a paraplegic with a high level injury so is a permanent wheelchair user. The shop assistant popped the box in the boot and then commented on the car 'this isn't bad is it?' and 'I can't afford a car like this'. There is this misinformation, perpetuated by tabloids like the Daily Mail that disabled people are 'given' brand new cars. People don't seem to realise that is paid for by all those luxurious benefits we get. Whereas previously disabled people could still buy a home or get a loan to afford a holiday now they are being turned down because benefits are no longer seen as a 'safe' income. The inference is that we should know our place and be seen to have a more fitting lifestyle of poverty. The argument that benefits caused the deficit is clearly spurious to anyone with a hint of a brain. Pensions take up the greatest section of the benefits bill with ESA and DLA only a small proportion. This is not really to do with income it is to do with stigma.

I was having lunch with my ex in-laws when one of them pointed out a disabled man eating with his family. He was using an electric wheelchair and needed to be fed by his wife/carer and my mother-in-law seemed very shocked by this -'what is he doing out?' she asked. Luckily I didn't hear about this in full till after the event because thankfully I was at the other end of the table. This man was not much different to my previous husband before he died, and we used to travel about all over the place. I couldn't believe the old-fashioned idea that disabled people shouldn't be part of mainstream society was still alive and well. This is the attitude I feel is creeping back into society. It is the idea that disability is so repulsive, so 'other' that a barrier needs to be between us and the 'normals'. The buffer zone was once the institution where within living memory people who were unacceptable were kept separate. The welfare system slowly changed all that. Disabled people were allowed to be visible, to be part of their communities and with the rest of society. I feel a reversal of this attitude and now it would seem to unacceptable to reintroduce institutions there has to be a different buffer zone - the buffer zone of poverty.

As much as I am desperate for election day to be over I am also very scared about what the future holds for disabled people beyond it. In my role as counsellor for people with multiple sclerosis I can already see how the changes are affecting the mental health of the people I see. The people who make these speeches, decisions and changes don't have to see the fall out of their policies, but I do. I can only hope for a more understanding and compassionate government who, at the very least, stop the rhetoric of hate. I saw that someone had finally reported Katie Hopkins for incitement to racial hatred, but who do I report for incitement to hate disabled people?

Venice

My first glimpse of the romance of Venice

My mum has always wanted to go to Venice. It has been a dream of hers for most of her life, and after the gift of some money we decided to go together. This was a huge trip for Mum because it was her first time abroad since she emigrated to Australia and then came back again at the age of 12. It was also my first time in Europe so a first for both of us. In order to make life easy for the trip we had booked airport assistance for me - this involves being taken through the airport in a wheelchair and having help through security and being first on the plane. This helps enormously because I find the long queues exhausting and painful, sometimes standing is worse than walking so queueing is my worst nightmare.

in Cannaregio

We were lucky to be able to afford a week's trip, but really this is necessity rather than indulgence. Flights wipe me out. I only had NYC to compare it to so I wasn't expecting to be as tired after a two hour flight, but still my legs and feet swell enormously, my joints ache and I lose some function. We arrived at 9pm and made the choice to spend money on a water taxi rather than struggle on and off a bus or ferry. This sped up the journey across the lagoon and gave me space to stretch my legs, also we would get the view as we approached the city. In reality, arriving was slightly eerie as we passed by dark and deserted islands which turned out to be Murano and the Greek Orthodox cemetery. It was misty, and sea spray splashed against the windows of the cabin so all we could make out were dim lights through the gloom. Then we saw buildings, ducked under a bridge and we were there; a tiny canal with tall buildings either side, atmospheric lighting and not a person in sight. We passed under tiny bridges, across the back of a hospital with an ambulance boat parked outside then our driver began to reverse into and even smaller canal until we could see a tiny lit up garden in a little courtyard. We disembarked at our hotel and were glad to make our way to straight to bed.

We were given a disabled room which I was happy to see had a bath with shower over it, plus a walk-in shower at the opposite corner. There was a little seat attached to the wall, that had a plastic seat with two handles. I found out part way through my shower that the seat with handles was just placed on top of the drop down seat and was not at all secure as I lurched forward! For me it is important to have both a shower and a bath, because I need a walk-in shower part of the time, but also need to soak myself in a very hot bath to help with pain and stiffness (although sometimes I get stuck and need a hand out).

A mask workshop in the Rialto

We were offered the hotel wheelchair to get around but I felt I didn't need it on the first day and soon realised I would have needed someone super fit to push me around. The flat areas were fine but there are simply so many bridges! If permanently using a wheelchair I would have been able to explore the more tourist areas such as St Mark's Square, but trying to negotiate small bridges was impossible and the larger bridges passed St.Marks looking out to San Giorgio Maggiore were ramped, but so steep mum would never have been able to push me up and over them. They have tried their best to make an inaccessible city accessible, but the nature of Venice is the tiny streets, ornate bridges, and canals. The best way to get around and cut down on walking was to get a week's pass for the Vaporetto; the Venice equivalent of the bus. Payment for a week covers the whole area and you can hop on and off anywhere you like. This was excellent for me because we could drop off at a stop in each different area and explore a little way before moving on. It made it possible to see more of the city without doing all the leg work. Although, for me, the problem was wandering further than I ought because I couldn't stop looking at everything. It was also very easy to get lost, adding to the time on my feet.


The extra time gave me ample chance to explore the different areas and take some great photographs, while also making sure I had rest breaks in between.

Florian Piazza San Marco

My highlights of the week are many; the first glimpse of a turquoise canal with a gondola moored under a geranium covered bridge; the first time the vaporetto turned into the Grand Canal; visiting the memorial to the Holocaust in the Jewish Ghetto; afternoon tea at the Hotel Danieli; dinner under lamplight at the side of the Grand Canal; the eerily beautiful mask and puppet shops; the unexpected dome of painted cherubs inside an ordinary red brick church; macaroons and hot chocolate at Florian in St Mark's Square; getting lost in Castello at night with the glow from the costume shops lighting our way; sunshine in Santa Croce and the way it looked inhabited from one angle, but deserted from another.

The things I find difficult going away are timings for breakfast - I am very sleepy in the morning and extra time to get ready means an early start to make breakfast before they finish! If I get up early I find I need a nap in the afternoons. I have to take short trips out and be able to return to the hotel when tired. I was still affected by the short plane journey, but once you add up a train to London, the underground, the Gatwick Express, a shuttle, the plane, then a boat it isn't as straight forward as a two hour flight any more! I picked up a bug on the way out that settled in mid-week and became a chesty cough, sore throat and headache. I felt weak and had to stay in bed for a couple of mornings. On my return both me and mum had a chest infection that has taken six weeks to shift. These are the drawbacks of travelling with a lowered immune system.

the beautiful Santa Croce

If I manage to save enough to do this again I would book an apartment in a quieter area of the city for a longer stay. This means I could pick and choose when to get up, when to eat and also have rest days between active days to balance things out. I would also take emergency antibiotics and maybe travel by train instead with a stop in Paris. This way I would see somewhere else, but would also alleviate the dryness, the swelling and fatigue of flying. I would base myself in Santa Croce, the area I fell in love with on the last day because of its faded beauty and the terracotta colour that gives off warmth. I loved the tiny canals and the greenery that is slowly beginning to take over the buildings as they decay and sink. The reflections off the water were stunning and I felt relaxed walking through the tiny alley ways. Every square had a small bistro or coffee house and there were greengrocers, and small food shops to forage through. I felt as though I was strolling through another time and the bustling areas of the Rialto and San Marco seemed very far away.

Moonlight over the Grand Canal

No matter the difficulties, this was an incredible trip and I wouldn't have missed it for the world. Venice is magical; appearing one way by day and another by night. It has an enchantment that is timeless and hard to resist. The food was incredible and it is possible to be happy just wandering and browsing all day without paying a fortune for certain activities or museums. Going into the more studenty area of Dorsoduro reveals a more bohemian Venice, with wider canals, small leafy squares and buskers and art galleries galore. Cannaregio with its market area, charming Jewish bakeries and washing strung out high above the canals was a Venice where real Venetians stop for coffee, walk their dogs and visit the synagogue. San Marco was elegant but noisy, full of tourists having their pictures taken with pigeons and their masks on. The Basilica overlooks the piazza with its elegant coffee houses and extortionate art galleries. I never tired of seeing a new bridge or balcony and some of my photographic efforts can be seen here. I bid Venice farewell on our final sunny evening, knowing that although I need to find a more comfortable way of being                                                                         there, I will certainly be back.

What I Want You To Know About MS

This morning MS.net challenged me with the following question: what do you want people to know about MS? I haven't blogged for a while and this was a good prompt to start up again.I am reaching the end of my counselling and psychotherapy training and one of the main areas of my client work is formulating a plan for clients to be honest about how they feel. Sometimes, we can expect our loved ones to be mind readers and when we complain that those around us and even the media do not understand our illness, we have to ask ourselves whether or not we are being open about how we feel physically and mentally.

I recently travelled to Venice (another blog to come) and caught a virus that led to a chest infection so I have now been unwell for two or three weeks. Even though this doesn't happen all the time I thought it would be a good idea to restrict myself to the past week and truthfully share how I felt each day.

On Monday I still felt so unwell I didn't go to college. I had a sore and strained throat, a rattling cough and blocked sinuses. As well as this I had some dizziness, and aching muscles and joints. I assumed this was to do with the virus and dosed myself up with some Beechams and the last dose of my antibiotics. I laid in bed reading and waiting for my medication to work, but started to feel drained and exhausted so went back to sleep until 12pm. I felt a little more alert so visited a friend, who asked me to stay the night because I looked so tired she was worried about me driving home.

On Tuesday I woke up and ached all over, especcially in my lower back where I had a burning feeling radiating out from my spine. When I got up and started walking I had the oddest sensation and it is hard to describe. I felt as though my hip joints were slightly displaced and I was walking on the edges of my feet. I tried to walk but kept stopping to stretch my joints and try to get them to 'click' back in to place. I found walking difficult and a bit 'wobbly'. I didn't trust my joints and was a bit tentative. I started to worry that the chest infection I'd had was now impacting on my MS. No matter how much I tried to move the joints, they still felt odd every time I walked. I had my hair washed and dried by the hairdresser who visits at home, but when I lifted my head out of the sink I was dizzy and walked into the door frame. My arms felt heavy, and I spent most of the day laid on my friend's couch reading or sewing.

On Wednesday I returned home because I needed to work on my assignment. I wrapped myself in a quilt on the sofa and began studying but I found it hard to read as much as I needed to. My eyes were sore, the words were swimming all over the page and I was nodding off all the time. The sense of displacement in my hips was still there, but now my shoulders also felt odd and every time I stopped to rest them I had pins and needles down my arms and into my fingers. I started to worry about slowly I could work, and tried to keep going but fell asleep. I went to bed early, but got up in the night with the same burning pain in my lower back. I drank a lot just in case it was my kidneys, and then couldn't get back to sleep till dawn. I then took some medication and slept until lunchtime. That afternoon my friend and I managed to go out for a coffee and a bit of comfort spending! In the tearoom we usually use I found it very hard to negotiate the old, uneven floors and steep steps. My leg muscles burned and I had no balance. As the afternoon went on I got slower and slower and 3 hours was enough, even with the long rest and pot of tea. That night I was nodding off before tea time and had to go to bed early.

On Friday I woke early and returned home to meet a boiler engineer, and got my central heating back up and running. I ran a hot bath and although I struggled to get back out, I found it relaxed my muscles and reduced my pain considerably. I then worked on my assignment for the day, while laid on the couch with a quilt to keep me warmed. I used a hot water bottle for pain relief but had to take a lot of breaks from typing and reading. I had the same issues with my eyes and reduced function in my arms. Every time I got up I had cramp in my thigh muscles and a combination of muscle and nerve pain in my back and arms. I noticed that my cognitive abilities were affected today: I found it hard to copy quotes into my assignment, or to deal with numbers as I did my bill paying and made several mistakes. I realised that I had forgotten to pay a bill the previous month which I had to smooth over with the company involved and explain that I have MS. I am increasingly having to direct debit all bills so I don't forget to pay them. I did my stretching exercises and then had a long sleep into early evening, then still had to go to bed at 9pm.

Today I managed to get up by 10am. I had severe pain on waking and have used the same medication and hot water bottle combination to relieve the problem. During the typing of this I have had to stop and stretch four times. I have a patch of severe pins and needles and nerve pain down the outside of my left thigh and my shoulders feel hunched and stiff. I have tight bands of muscle pain round each upper arm and I can't feel the outside of my hands or little fingers. Every few minutes the feeling of someone 'walking over your grave' pulses down my right leg and radiates behind the knee. My feet are frozen despite socks and fluffy slippers. My neck has started to stiffen today and I have cramp every so often in the right side of my neck which means I have to stop whatever I am doing to stretch, relieve it and then rest for a while.

It is hard to be honest. With MS there is the feeling that no one believes you're feeling ill, because very few of the above symptoms are visible. Walking into the door frame doesn't go unnoticed though! The postman is probably the person who sees me in my most honest state because he has started to realise that I am having a bad day if I open the door with my hair not done and still in my Snoopy pyjamas. It is probably even more honest for me to admit that all of the above is normal, despite having a prescription of amitriptyline, pre-gablin, paracetamol and 12 hours release morphine capsules. I also have naproxen that works as an anti-inflammatory for my joints; solifenacin and vitamin d with calcium for my bladder which is prone to calcifying urine and infection; levothyroxine for my under active thyroid; acupan and baclofen work on muscle spasm and nerve pain. I don't tell people about this because I can see the alarm when I pull out my pill box and I am worried people will think me totally incapable.

These days I spend at least one - two days in bed whether that is 24 hours, or a series of mornings. I cannot walk far and I am uncomfortable wherever I go. When my friend and I plan holidays we spend a long time looking at cottage or hotel interiors to see if the couches look comfy. In the last year I have had to accept help from the rehab team who help me with occupational therapy and physio but they come to me because of my fatigue. I also have help in the home, with someone coming in to iron and clean the house top to bottom. This has allowed me to look after myself better, but it is still taking time to adapt to my new 'level'. I guess I want people to know that MS is not easy, even when it is not visible. I want to ask people not to judge but take me at my word when I'm telling you about my lived experience.

Proud as Punch

I have recently been working on a book called the Nice Girl Syndrome. This has been a workbook especially for people pleasers or other women who are abiding by the law of the nice girl. Nice girls don’t misbehave, don’t make mistakes, don’t drink, swear or lie. Most importantly, nice girls always put other people’s needs before their own and never, ever show off. I have been trying to be a nice girl. A lot of people might think that’s rubbish, but I did agonise over putting myself first and if I did anything I perceived to be wrong I would feel so guilty it would bother me for weeks! What I learned from working through the book is that I don’t have great self-esteem and struggle to feel pride in myself. I think this is something a lot of women struggle with, especially women with disabilities. In a climate that is very competitive anyway – women must be seen to have it all – women with disabilities can struggle to recognise their own achievements. If they are unable to work there is no career development, college can be hard to access and sometimes disability can stop a woman from having a family. I have all three of these obstacles, although I am trying very hard to stay in college and become a therapist.

Without these milestones it can be hard to know where your life is going. I have to find different ways of feeling I’m valued in life. Many a time at parties I have been asked what I ‘do’ and to hear the word ‘nothing’ as it comes out of my mouth kills my confidence. Of course I don’t do nothing: I write 3 blogs, go to college, just started a small business and volunteer in 3 or 4 different places. Yet, none of these things are valued in the outside world- they don’t bring money in so far and I am not recognised as a writer. It seems that I need recognition from the outside world before I can feel proud of myself. I realised I needed to work on being proud of my own achievements, but how to do that?

I remembered the recent #100happydays craze where everyday people took a picture to show what had brought them happiness on that particular day. This was a great way of training yourself to be grateful for some of the great stuff we have in life that we might normally take for granted. I did this and found that the habit of looking for something happy every day did train me to look on the bright side. But, how to devise the same kind of training for self-esteem? What makes us happy does not necessarily raise our self-esteem. We can be happy about seeing a friend or having a great meal out, but it doesn’t give us that sense of pride in ourselves.

Feeling pride in ourselves is not about being selfish or arrogant. It’s about simply acknowledging ‘I did that and I did it well’. So, here I am starting a new program for those of us who struggle to give ourselves a pat on the back. The idea is that every day you post something you are proud of. It could be a big thing like completing a dissertation or raising some money for charity, but it could equally be a little thing like managing to get the kids to school while struggling with a massive migraine. For people like me, with a disability, it could be making it a few yards further on your daily walk or getting through a gruelling treatment. The point is to build up a picture of just how resilient and strong you are. As the weeks pass the posts will buoy up your self-esteem and show exactly how much you achieve and dismiss without thinking. Each achievement shows you that there is a reason and purpose to life and that you are worthwhile. This works for anyone who feels their self-esteem is low or even non-existent! It is not a place to brag, but a place to learn how to value yourself, however much you can manage. So start by tweeting either a photo or a sentence that documents your proud feeling with the hash tag #proudaspunch .Keep it up for 100 days and hopefully we’ll start the habit of feeling our own value. I’ll start tonight and I look forward to seeing all your proudest moments too.
#proudaspunch

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.