Life With Multiple Sclerosis Is Unpredictable

I’m never quite sure how my body is going to behave
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I’m pretty sure most of you won’t have given it much thought when you got out of bed this morning. You were confident that your feet would feel the floor, your legs would take the weight of your body as you stood up and the room would stay still as you moved. You felt assured that your hands would feel the cup and be strong enough to lift the kettle to make your morning cuppa and you knew you would have the energy to carry out your plans for the day. No worries.

But what if it wasn’t like that? What if every morning when you woke up you didn’t know how your body would behave? Which bits would work? Which bits you could trust? Whether you would be able to see clearly or move safely? Whether there would be pain or numbness? And whether you would have the energy to have a shower never mind anything else? This is how life with multiple sclerosis (MS) can be. Unpredictable!

MS is a neurological condition where the body’s immune system attacks the outer lining of the nerves (myelin). The damage causes disruption to the messages getting through from the brain (picture an electrical cable with damage to the plastic casing so you can see the bare wires and the current misfires). The disruption to the message getting through causes a whole host of symptoms; numbness, pain, muscle spasms, vision issues, problems with balance and fatigue to name but a few. There are different types too. Relapsing Remitting (RR) is the most common one, where you have periods of new or worsening symptoms followed by times where they get better, but after each relapse you never quite get back to as good as you were before. There are also progressive types where there are no remissions. Secondary Progressive (SP) can develop after 10-15 years of Relapsing Remitting and Primary Progressive is a progressive form with no periods of remission from the outset. And even within those categories everyone’s experience of MS is different. The list of symptoms associated with MS is huge (well the nervous system does a lot of important stuff!) and fortunately no one has them all, but each person will have a unique combination of symptoms to them. There are an ever increasing array of treatment options available for RRMS, but less so for the progressive types.

I’ve had MS for over 20 years. It started in my early 20s as RRMS and became SPMS about three years ago. It began with a tremor in my right hand, a numb left foot and being tired more than usual, but I’d recently left university, moved to London and started a new job so I thought I was bound to be a bit run down. The odd sensations came and went along with patches of pins and needles and numbness. In fact I did start to wonder if I was imagining it! Then I had pain and change in vision in one eye and that seemed to be a game changer. A referral to hospital and tests eventually confirmed it was MS, but it took a couple of years to finally get a diagnosis. Back in those days there were no treatments. Some drugs had been approved, but the government’s regulator, NICE, said they were too expensive. Eventually they were made available and I started treatment and it did seem to help reduce the relapse rate but the side effects were horrible and then it stopped working. By the time new drugs were approved my MS type had changed and I was no longer eligible for these treatments.

So now every day is unpredictable. I’m never quite sure how my body is going to behave. Sometimes the numbness covers great swathes of my body, other times it might just be a foot or a hand. Fatigue is a constant, unwelcome companion; it can be managed to a certain extent but it can come on suddenly and without warning. It’s not just being tired, it’s like the worst hangover and the worst jet lag rolled into one, meaning that even thinking is hard work, never mind moving! Pain is a relatively new symptom for me, but it is neuropathic (nerve) pain, which means it does not respond to ordinary painkillers and the painkillers available have horrible side effects, so I have been reluctant to try them so far.

To manage my condition I have adapted my life to accommodate my limitations. I walk with a stick outside and use a mobility scooter for longer distances. I had to leave my previous job but now do some voluntary work, which I can adapt according to my needs. It’s not quite how I envisaged my life as a forty something woman but I had to swallow my pride, and if these adaptations mean I can do more, especially as a mum, then it’s worth it.

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