Keep taking the Medicine

The past few days have been all about re-setting my medication. This is an annoying and time consuming pastime that is happening all too often these days. I am in the final stretch of my Counselling diploma so my brain is full of CPD, PDP, CBT, TA and loads of other initials that I can barely remember. This means that I am extra fatigued, but also my cognitive abilities are a little bit stretched. There is such a thing as fibro-fog and I think my pain syndrome certainly gives me a dose of that, but I think there is an equivalent feeling in MS where the slightest distraction during a task means that it all goes 'tits up'. In the last year I have: gone to an appointment at the GP, found out I didn't have one then realised I should have been at the dentist; sorted out the work I wanted in an assignment and the work I didn't want to include then put the wrong pile in; started to forget birthdays and even my friend's children's names. Add to this my list of medication and you can see why I'm starting to feel senile.

Unfortunately, it takes a never ceasing cocktail of drugs to keep me moving and doing as much as I do - probably about half of what I want to do leading to intense frustration. I am a chatty person who loves to be out with friends and family doing things. I am also always full of ideas of things to do, see and make now that my friend and me have a little creative business ticking alongside our Occupational Therapy. I have taken to keeping lists: places I'd like to visit, where I'd like to stay, books I want to read, as well as an ongoing sketch and ideas book for our creative ventures. I am sometimes bursting full of enthusiasm, usually at the point when my body is saying 'no more for now'. Only those who know me well, know how hard it is to keep my enthusiasm while having the balance with my physical need for rest, sleep or just to 'be'. My counselling training has played a large part in this and I have noticed while writing my final piece of work - a self-appraisal - how much my training has taught me about living as well as working. Over the last three years my medication has doubled and the invasive procedures needed to keep my pain at bay have also increased.

If I don't keep my medication and treatment plan at the forefront of what I do I can end up in bed for a fortnight. In the swirl of the last few weeks I have missed both. The admin surrounding my excellent pain clinic is very poor, and they have messed up my appointments once again. I was transferred to a different consultant without my knowledge so I telephoned to complain i wanted my existing consultant. They could make the change in the appointment department but could not give me the treatment appointment I needed only a clinic appointment. I explained I had just had a clinical review 2 months ago and needed an ongoing treatment appointment. She could not help me and suggested I telephoned the secretary. I did. For a fortnight. Every single day. I either got no answer at all or an answering machine that ensured me they would ring me back. I left 7 separate messages. They didn't phone me. I eventually resigned myself to waiting for the clinic appointment even though my treatment was due in December and the appointment was for May. I was rooting around for my letter last Thursday and had the date in the diary for this Wednesday. I rang the appointments department to say I hadn't received a letter. They told me my appointment was on April 15th. I don't know whether this is me or them!! I assured them I had the appointment written down for 20th May, but now I will have to wait another 3 months without treatment. I have a series of injections in my spine. 21 in all from my neck down to my coccyx. This reduces stiffness in my spine but also reduces spasm in the muscles coming from the spine, that causes nerve pain into my elbows and all the way down the backs of my legs. Without them I am struggling with walking, getting in and out of chairs, getting in the car, driving, bathing and pretty much everything. On my worst day I can't even lift my arms up to my head to wash my hair. I have to do this weird Dale Winton like movement where I wash my hair sat down, with my head bent forwards and my elbow still clamped to my side. Its like a T-Rex trying to change a quilt cover. Very bloody difficult.

In place of my pain treatment I have been having physiotherapy where a neuro-physio comes out to the house. This has been fantastic because previously I had been expected to drive all the way to Lincoln so I was tired before I got there and too tired to drive home afterwards. Now we have a cup of tea, talk about what's happening and then she works on my muscles. In the last two months the restriction in my thoracic spine due to muscles spasm is now spreading round my ribs in a sort of hug. This is not the warm, friendly type of hug. Its more like a boa constrictor winding its way round my torso. It has even started to restrict my breathing, jamming up my diaphragm, leading to chest infections. I spend a couple of days after physio cursing her name and clutching my bruised ribs then about 10 days later checking when she's coming again. It is a relationship with more S and M than the 50 Shades movie.

Added to this is the medication which I bungled so completely a couple of days ago. I had an emergency dentist appointment because I thought I had an infection under my crown. It turned out I was right and needed some antibiotics. I started them straight away. On Friday morning I felt dreadful, the pain was shooting up my nose and into my head, I felt groggy and generally unwell. I was gathering my medication to go downstairs when the door bell rang. I picked up my antibiotics and paracetamol thinking I would go back for the main wallet of meds. Then while talking to the postman, giving the dog biscuits, feeding the cats and putting the kettle on I totally forgot about my normal meds and assumed I'd taken them. I took my paracetamol and antibiotics, put some rubbish hoarding programme on the TV and nodded off. I woke at 2pm completely disorientated, still in my pyjamas, and in terrible pain all over. I was stiff and struggled to get up. I wondered what the hell was going on and wandered about thinking this infection was affecting my whole body. It was only when I'd come round half an hour later that I realised I hadn't taken my meds. I took them immediately but since my morphine is on a 12 hour cycle it threw out the whole weekend. I was at a point that the pain was so bad I couldn't have waited 6 hours to take it within my normal time range. The only thing to do was gradually move the dose back, so that night I waited up till 2am patiently till I take the next dose. Then I slept straight through Saturday morning to take the next dose at 12pm, then 11pm last night then 9.30am this morning to get me back to normal for the week ahead. It means I missed working on our latest cushion order, I couldn't do my home work, I missed a vintage fair yesterday and today will be spent mainly in pyjamas resting up for college tomorrow.

If I didn't take my meds I don't know where I'd be. I have daydreams where I stop taking all the drugs and follow some wonderful herbal programme and diet that will keep me healthy and balanced, but I know it would be very hard for me to give up some of the drugs I'm on. I have some difficult side effects too: constipation, drowsiness, dry mouth and eyes, stomach acid, increased appetite and weight gain, breast growth not to mention nightmares, headaches and low mood. However, without them and my leg muscles become so stiff I have a spastic gait, I feel depressed and anxious, I can't walk and would be using a wheelchair, and me independence would be gone. Of course the pain would be difficult to manage too. Now I am so far down the road I wonder which of my symptoms are due to the medical cocktail and which belong to my cocktail of auto-immune disorders.

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.