Occupational therapy – Another MS Warrior

129 What’s happening with my MS?

Hello dear readers, I’m sorry for neglecting you of late. Today is my 66th day in lockdown and as everything is on hold, there really isn’t much to report!

I’ve had lots of messages and questions from family and friends about how my MS is affecting me at the moment and my plans for treatment, so I thought I’d write a bit of an update.

Over the last few weeks, I have had telephone appointments with my GP, an occupational therapist, a physiotherapist, my neurologist in Salford and with the neurology team in Sheffield. My long awaited appointment with the MS Nurse has been delayed as she has been redeployed due to the pandemic.

The situation with Professor Sharrack in Sheffield is that he believe that I have Secondary Progressive MS with superimposed relapses. This would exclude me from their criteria for HSCT treatment there. They would like me to have a further MRI scan, which they will compare with the previous one, before making a final decision. At the moment, the hospital is not carrying out routine scans, so this is likely to be on hold for several weeks/months/who knows?!

My own neurologist is very concerned about the length of time I have been without treatment and would like me to try another DMT (Disease Modifying Therapy). He understands why I am pursuing HSCT but feels that it won’t be safe to travel for treatment for quite some time (a year or more was mentioned) and would like me to be protected from further relapses during this time. So I have agreed to try Tecfidera. This is taken in tablet form and reduces both the frequency and severity of relapses. My neurologist thinks I am having lots of mini relapses, so hopefully this drug will reduce them.

You can read more about Tecfidera here … MS Trust – Tecfidera

Regular blood tests are required when taking Tecfidera, including an initial test to check liver and kidney function, full blood count and diabetes status. So, last week I went to Salford Royal Hospital for the test. It was a very strange experience, having not left my local area for weeks and only occasionally driving around the block.

The hospital was eerily quiet and no one seemed to be wearing a mask, except me! I was asked some COVID questions and had my temperature taken on arrival (by a man not wearing a mask) and several vials of blood were quickly taken (by a nurse who was wearing a mask).

I have also been prescribed a drug that may help with my debilitating fatigue and brain fog and started it this week. It takes a few weeks to begin to take effect, so fingers crossed it works for me ??The drug is called Amantadine and is an antiviral which has been found to help 1 or 2 people in 5 with MS fatigue, although the mechanism for this is not known. It is sometimes used to treat people with Parkinson’s Disease as well.

you can read more about Amantadine here … MS Trust – Amantadine

I am still off work and my GP would like me to stay off until both new drugs have had a chance to kick in. I have very mixed views on this … some days I feel that I could manage work (at home of course) and on other days it feels like an impossibility. Being at home has given me lots of time to think and come to the realisation that I need to make some changes in the long term (whether I eventually have HSCT or not) …I have no idea yet, what those changes might be.

I have been continuing on my daily walk most days and some days this has been quite a struggle, as my left leg tends to drag and can often feel like a heavy, dead weight by the time I’ve walked a few hundred yards. A couple of weeks ago, I developed a severe muscular pain in the right side of my lower back. I spoke to my Occupational Therapist about this and after much discussion, she worked out what was causing this problem. Most of the time, I wear flat ankle boots when out and about, as I find these comfortable and benefit from the ankle support, especially on my left foot. When the warmer weather arrived, I started wearing flat lace up pumps and was aware that my left foot was dragging and would sometimes catch on the ground. The OT worked out that I was leaning slightly to the right in order to accommodate my dropping left foot and that this was the source of my back pain … how amazing is she?! So I have now been provided with a device to help lift my left foot, which should reduce tripping risk and take the pressure off my back.

It’s ugly and a little uncomfortable, but I’m going to persevere with it. If it keeps me mobile, who knows, I may grow to love it!

A combination of Tiger Balm, hot water bottle and gentle movement has healed my back pain, so I’m back on my feet again.

I hope you are all staying as safe and well as you possibly can ?

113 Reflections

I always struggle a little at this time of year. I guess we all tend to become a little reflective at this time, looking back on what we have achieved, or otherwise, in the last 12 months. What aspects of our lives have improved and which have become worse? As well as this, it tends to make me reflect on life in general and to notice the passing years and wasted time.

During the last year I have reduced my hours at work – this is the first time in my life that I have ever been a part time worker. This was definitely the right decision for me, although my MS has progressed further, to an extent that I’d probably benefit from reducing my hours further. Unfortunately my finances don’t allow for this at the moment.

The last few months at work have been particularly challenging and by the end of December my symptoms were so overwhelming I was forced to take some time off. I am back at work on Monday and although looking forward to seeing my work team and getting back to”normal”, I have a lot of worry about whether I can cope. Unfortunately this worry is disturbing my sleep, contributing to my fatigue and making me feel worse!

I had a telephone appointment with an Occupational Health nurse in December – she was supportive and helpful, but overall, I’m not sure I gained much from it. She has made some suggestions about changes, or “reasonable adjustments” that could be made to support me at work, but none of them really solve the problems I face. The building I work in is not disability friendly at all and I don’t think there’s much I can do to change that. At a time when public sector workers are under a resumption of pressure, austerity measures and huge workloads, there’s no way I can reasonably request to do less.

On the plus side, I am now receiving the Daily Living Standard Rate PIP (Personal independence Payment), for which I am very grateful. I also have an appointment this week with an Occupational Therapist from the Community Neurology Team, to provide advice and see whether there are any adaptations or equipment that could help me at home.

This time last year, I was managing well in my little house. I live in a small 130 year old terraced house, with an exceptionally steep staircase! Friends often comment on how steep it is, with very narrow treads, but I’ve been determined to push through and keep using them. Over the last year, the stairs have become more and more challenging for me. Going up, I feel reasonably safe and usually climb on all fours. Coming down is another matter altogether!

I fell down stairs (from about half way) a few weeks ago and since then, do not feel safe when coming down the stairs. I have been thinking for a while that need to move to a bungalow or a flat and my recent experience has confirmed this for me. I feel very sad about this …I love my little house and I love where I live …but I need to feel safe and independent.

I have a personal Instagram account and as usual asked the #BestNine app to find my most popular photos of 2019. This year my life seems to have consisted of family and finger nails! Where are the nights out, the holidays, the weekends away? Where are the day trips, visits to galleries and exhibitions? Where are the cocktails and journeys on the 192?! Where are the gigs and festivals? Where are the protest marches and rallies? … I want to go back to my old life …fuck you MS.

If you’ve read this so far, thank you for indulging me. I know I sound like a whinger and I promise I’ll snap out of it soon! I have much to be thankful for and when I reflect on 2019 with my positive glasses on, this is what I find …

My wonderful children and their equally amazing partners ????‍?‍??
My fantastic brother, sister, their partners and children ❤️
My wider family ?
My kind, supportive and loyal friends ?
A job I love with the best ever colleagues ?
My beautiful cats! ??
My little house and my local community ?
I can walk and talk and take care of myself ??‍♀️
I have a plan to improve my life … HSCT here I come! ?
The amazing support and efforts of family, friends and strangers alike, in helping to raise the funds needed to pay for my treatment ??

Happy new year everyone!

GoFundMe

14 STAR

Today I had a visit from an occupational therapist and a physiotherapist from my local Team for Adult Rehabilitation (STAR). What amazing people they were – so thorough, kind and helpful.

They advised me on walking stick height, exercise to improve balance, welfare rights, work life balance, issues with parking at work, slippers(!!), fatigue, vision and the importance of staying active. They are arranging for a hand rail to be fitted in my bathroom and have given me advice on walking up and down stairs. They were sympathetic and supportive when I became a little tearful.

I am keen to improve my general level of fitness (and to lose some weight) and am to be referred to a supported scheme at my local gym (funded by the NHS). I am also being referred for counselling.

I am amazed at the level of support available to me and feel so grateful that I live in a country that provides this safety net for people experiencing difficulties (I know we don’t always get this right for everyone). I struggle so much with asking for help but they totally understood that feeling. They encouraged me to make decisions for myself on my next steps and reassured me that accepting help enhances my independence, rather than reducing it.

Losing my independence is the thing I fear the most and they were able to help me to see that I can use this feeling in a positive way, to give me the determination to keep living my best life!