A Day in the Life with MS
This week is MS Awareness Week 2022, spearheaded by the Multiple Sclerosis Trust. Further information relating to a week long series of webinars is available on the link, and how you can donate and get involved: MS Awareness Week 2022
Did you know, there are approximately 2.8 million people with MS around the world? It is commonly diagnosed between the ages of 20 to 40, so it strikes people in the prime of their lives. Unfortunately, there is currently no cure for MS.
This week’s blog post is written by our Contracts Manager Bradley Staff, who is diagnosed with MS and lives with it daily...
He says that he is unusual in that he is a male who was diagnosed later in life. It seems to be a common problem that people get misdiagnosed for far too long, which is why there is a need for more funding and research in this area to help others in the future.
Here is a week in his life.
Monday
I don’t like Mondays. Just when you have spent the weekend recovering from the last working week...another starts, the weeks seem so long nowadays. Sunday evenings I am relaxed enough to sleep well and then Monday morning comes around... weekends and days off can’t come soon enough. They give me a chance to regain some energy. There are no Duracell batteries for me, do people without MS feel this tiredness?
The day has flown by. I’ve been up since six am and managed a shower today without slipping. It’s just gone 3pm now, I’m starting to run out of energy and yawning my head off. Coffee doesn’t make any difference for me, I need to conserve some energy for an evening meal.
Managed to push through till the end and finish work. Potted up some compost filled tubes ready for tomato seeds. One good thing about having MS, only one hand working means only one muddy hand to wash! Still trying to see the positives in everything, but it’s hard.
Another day of coming to terms with having to ask for help at work as my brain was on slow go, it’s hard to swallow your pride.
Tuesday
Well today was not a good day. I didn’t sleep at all last night, why is it that your arms and legs don’t want to do what you want during the day but suddenly come to life and start randomly twitching when you lie down to sleep. The more you think about it the worse it gets. Then when the hours have passed, and you have nothing else to think about, your mind starts to remind you of all that this disease has robbed you of.
You remember when you had energy and enthusiasm for life, all the things that you took for granted like being able to just walk properly. Not a good place to be in the wee hours. End result was I had to book an emergency leave day today, not really what leave is about but needs must. Not what I really want from my life.
Wednesday
Back to work today but I still feel washed out after yesterday. It’s hard trying to explain to colleagues what this disease is like. I have come to realise the mental health aspects of the condition can be worse than the physical ones as they are completely invisible.
Brain fog is one of the worst elements when trying to work. If I had to describe it, it's like dyslexia of the brain, you can see all the words on the screen, but they don’t seem to make any sense. However many times you think there is always someone worse off, we all still come back to ourselves, there is no escaping MS, it's around 24/7 and it’s the gift that just keeps on giving.
Symptoms change from minute to minute. This is what is so hard to manage, constantly changing problems. One minute a trip to make a cuppa, the next time it’s a venture into the unknown. The physical fatigue is like no other form of tiredness. I still haven’t had the energy to plant my tomato seeds, maybe tonight, nothing seems quite as important as getting through the next hour though.
Thursday
Well, the long weekend is nearly here, hopefully the weather will be sunny so I can top up my vitamin D levels. Hoping to try a short walk Friday with my walker and Olivia. It’s flat where we are planning to go, one advantage with the walker is that you are never without a seat.
I read lots of blogs from others with MS. I am very aware there are some out there who are worse off than me, however it doesn’t stop my symptoms and issues with this illness. I do like Mr Google when it comes to finding out more about this condition. There are more intelligent and witty people out there than me. I have been trying to see the funny side of things today.
Friday
Managed about half a mile walk this morning, fortunately the weather was quite mild. My speed is that of a tortoise not a hare nowadays, so I tend to feel the cold more. Legs felt knackered afterwards. Not sure how I am going to get on when I go to the lakes later this year, will probably have to be little and often, and plenty of coffee and cake. What a good excuse!
Had another trip to yet another London hospital confirmed for some screening tests for an updated MRI towards the end of May. At least it’s a bit like an MOT for my body. The MRI will be quite a session, up to three hours with that banging noise, and tubes out of my wrists for blood samples. Hopefully I will sleep through it.
Let's hope all this research helps with others who get MS in the future. I found out that only 25% of people diagnosed with MS continue to work, what a vast untapped resource.