That Thing…. Multiple Sclerosis

Sometimes you go to a party and end up stuck with someone talking at you about how much better their life is than yours, how great their house is, how fast their car is and how clever their kids are. You get so tired and are thinking of how to escape, looking for someone you know who needs a drink. But you don’t see anyone. You start to fade, everything gets blurred, probably sipping your drink a little aggressively which doesn’t help. Now stretch that in to everyday and add that suddenly your legs or arms don’t always do what you want them to do. That is my relationship with Multiple Sclerosis. That guest at the party of life that just won’t shut up or go somewhere else.

This something of a flippant summary. My MS is also not that bad and there are so many things that are worse. Much worse. But still, there are challenges and issues. I mention them a lot in this blog and it is difficult to do anything without these issues in the back of my mind. Like that guy at the party MS is just not going to go away. So I had better deal with it.

A Little History

I was initially diagnosed with Multiple Sclerosis on the twenty-third of August, 2013. The diagnosis was confirmed with a lumbar puncture, or spinal tap (love that film!), about four weeks later. There then followed more tests, more MRI’s and a lot of uncertainty and confusion for a year until the form of Multiple Sclerosis was finalised. Primary Progressive. Progressive normally means something positive, onward development. In this case it just means that condition slowly worsens. It is difficult to predict the path MS will take as ‘worse’ can take a lot of time and depends on various elements. Lesions, the damage on the coating of the nervous system resulting from attacks by my immune system, can grow but symptoms may not progress but then lesions can be stable and still symptoms progress.

Confused? Welcome to the club! So what is the impact?

Physical Issues

Physically, this progression has resulted in increasing numbness, especially on the right side. Walking and using my right hand for typing or writing can be difficult although, let’s face it, my handwriting is so bad that it does not matter. It would be nice to have the feeling I can hold the pen, at least. With walking the side-effect can be foot drop which makes walking difficult and walking long distances unaided very difficult.

Positive is that I have not had much outright pain, just recently around the right hand and arm. There is also a feeling that someone is squeezing me around the chest. The ‘MS Hug’. Not too painful for me but I can feel it, especially when exercising. Not a nice hug. Also positive is are the walking aids that physiotherapists have provided me. These have been a huge boost. Museums, concerts. All are back on the agenda. Cycling is also still on the agenda, it is just more effort to get my foot on the pedal. Having an E-Bike for everyday use is big help.

It is important to state that all of these issues listed above led to consultation with my doctor. It cannot be assumed that all are down to MS. Following appropriate blood tests or X-Rays, though, it is clear that MS is the cause.

Cognitive Issues

I must admit that the physical issues are hard but I find the cognitive issues increasingly difficult. It is noticeable that I need more time to do things and can appear slow and my memory is just full of leaks. The impact of this is inconsistent. Take speech. Some days I can speak well, others I mumble, stutter or sound drunk. It can also be hard to stay focused, to concentrate. Conversation can wander from one subject to another and then somewhere else again. I just can’t focus.

It is difficult as it is invisible. Physical issues can be seen, cognitive cannot, and the impact of this aspect of progression can be hard to explain. The feeling of being a bit slow, a bit in the way. It is hard to get away from such feelings, especially when things that were so easy once now feel quite difficult.

No-one else complains, though. The feeling of being in the way is in my mind. Something that always needs to be worked on.

Treatment?

Multiple Sclerosis cannot be cured but there are treatments both with medication and physiotherapy. I am undergoing six monthly infusions of Ocrevus to slow lesion growth. This will not reverse symptoms and the damage already done means that progression will continue but I hope for some stability so I can build via exercise under guidance from my physio. It is important to stay as active as possible, keep the muscles moving, and I will still try to enjoy my cycling despite the challenge of putting my foot on the pedal!

The Sense of Loss

So that’s the symptoms that have resulted from progression. What is their impact? Well, besides what I list above there is… well… confusion. Sadness. A feeling that the world is getting smaller. That scares me. Fear is inescapable. A sense of loss is also apparent as what you can do every day slowly gets less. What was normal like a walk to the shops and back is now something that I cannot do. It is difficult to keep positive when listing what cannot be done.

Talking About It All

It is strange to relate for someone who writes about this so much but I find it very difficult to actually talk about Multiple Sclerosis and the impact it can have on me. I guess this can be seen as psychological impact although I find that sounds a little dramatic. It does make me perhaps a little too sensitive to others and, strangely, it can feel somewhat isolated. Not that I am actually alone, far from it. There are many people whom I value, loved ones and friends. I actually found this difficult to put in to words until I saw a post on an MS forum written by someone whose illness was progressing with increasing impact on physical and cognitive processes. This person still had many close friends and family but still felt isolated, lonely perhaps.

The first response on the forum missed the point. It talked about definitions of loneliness and how the person was not lonely. Others were more understanding, human. They centred on the fact that it can difficult to explain the impact of MS clearly, especially the cognitive problems. This is not the the I-am-alone-and-no-one-likes-me type of isolation. Absolutely not. It is being surrounded by so many supportive ears but simply not knowing what to say or how to say it. Sometimes it is easier to write it.

Living With Multiple Sclerosis

It is important to say that, despite all of the above, I do count myself very lucky! Indeed, I keep using that word, lucky. I really believe it though. My MS was diagnosed quite early and staying physically active has also helped to ensure that progression has been slow, a feeling endorsed by my neurologist and physio. Even though progression has had the impact described above there is still a lot that I can do. I have always tried not to let Multiple Sclerosis define who I am even though it influences what I can and cannot do. As some doors start to close others remain ajar. It is time to look behind these a little more.

This is where the Ways of Escape that I mention elsewhere in the blog come in.