As Samson Centre Member
When I was asked to write an account of how MS affects ME, my head went into a jumble because it affects me in a myriad of ways, but to reduce them down to written words is difficult.
I received my diagnosis of MS over 20 years ago. At the time my symptoms were banding, pins and needles in hands and feet.
Looking back, I think it has evolved in stages with each stage affecting me in different ways.
The first stage I call the ‘it doesn’t quite feel real’ stage in which I received the diagnosis of relapsing remitting MS. It lasted about 10 years. During this time things went on almost as normal with fatigue, pins and needles and an occasional weakness in my left leg affecting me. I was actively employed in the City, but the company where I was working at the time relocated which would have meant a very long and tiring commute. That is when I gave up work. As a career focused person I realised I could no longer pursue it in the same or perhaps any way. This was the first of many significant changes imposed on me by MS.
Next came the ‘MS making a grand entrance’ stage and it happened over a period of about seven years.
Gradually the weakness in the left leg progressed to dropped foot and some balance issues surfaced. I was prescribed various MS medications which whilst potentially slowing MS progression, also had other effects. I was subsequently diagnosed with osteoporosis and interstitial lung disease, both of which were induced by the medications. Walking was no longer normal, my body was in turmoil and the reality began to sink in. I needed help for which I was mentally unprepared. When I asked for help, I was unceremoniously handed a walking stick and told to use it. I cried. Being the forever positive person that I am, I got on with life and adapted to a different way of moving around and doing things. It was a very, very difficult mental shift.
With MS you can never get too comfortable with the status quo and so the next few years revealed the ‘I am here to stay, I have moved into all aspects of your body‘ stage. Issues affecting my left leg almost seamlessly moved to my right leg also and walking felt/feels like I am dragging a huge weight around. Leaving the house became a huge planning and research exercise to ensure my destination was accessible (this as most of you will understand, is still the case) accompanied with stress. As a result, I started going out and socialising less and less, almost a prisoner in my own home. I needed help which came in the shape of a referral to wheelchair services. I cried.
Here I am five years later, using the wheelchair more and more. The difference is that now, the wheelchair means freedom and I am learning to embrace it.
So…………………. the effects of MS on me have been and are significant.
- Career ending and loss of earning power
- Reduced and deteriorating mobility
- Extreme fatigue
- Reduced independence and increased dependence ( I will just add that my drivers licence has recently lapsed which was very sad for me and cemented with finality, the fact that I will never drive again)
- In many instances my dignity has not been respected which for anyone is the most difficult aspect of being disabled
- The impact on my mental health of dealing with feelings of guilt and becoming a burden on my loved ones
- My deteriorating physical appearance and how it impacts on how I present myself publicly
I cannot diminish any of these effects or dramatically improve them but what I can do and have done is recognise this, accept help and then celebrate the joy of life and the people who surround and support me.
If I could visualise MS and me, this is what it would look like. The first picture depicts how MS affects me and the second one how I have responded, staying strong, adapting and finding new ways to grow.
MS, ME and counselling
The many years of living with MS (and other debilitating conditions), the fact that this illness is progressive and therefore deterioration is unstoppable, undoubtedly has an impact on mental health whether it be on a conscious or subconscious level. I do feel that I have dealt with it all relatively well. However, in the back of my mind I knew I was suppressing or ignoring difficult feelings which were arising and were compounded as MS progressed. As a cup half full kind of person I was hesitant and in two minds about whether or not I needed counselling, and how it could be of benefit to me.
As the Samson Centre worked toward introducing a counselling service, I decided I would do it if the opportunity arose for me and I am so pleased that it did.
Sarah Holburn has joined the Samson Centre and is a MBACP registered counsellor and she attends the Centre on Mondays for counselling.
I was a little nervous to begin with, but Sarah very quickly put me at ease and together we agreed how I would like future sessions to be conducted. I feel that Sarah with all her experience, her wisdom and her empathy was and is absolutely the right person to facilitate curative counselling, certainly for me.
I have already attended a few sessions and it has enabled me to focus on and bring to my consciousness, thoughts and feelings long buried in a box in my brain. It happened quite naturally for me, and this was surprising. The unpressurised, safe space and Sarah’s kind empathetic nature were key. Even after only one session I felt a difference which I can only describe as feeling ‘lighter’. I have had a further five sessions and am feeling confident in confronting and dealing with self-defeating thoughts and feelings arising from living with MS and a failing body.
This has been and is my path to greater self-acceptance and I am thankful.