So, what is Multiple Sclerosis (MS)?
You might have wondered and may have been too embarrassed to ask me. Well, 10 months ago, I was oblivious to it. It was something other people, much older people get. Since then I’ve found out quite a lot and I thought it might be quite useful to write about it here.
Around 100,000 people in the UK and about 2.5 million people across the world have some form of MS. It affects almost three times more women than men. People commonly get diagnosed in their prime of their lives, at between 20 and 40 years old.
MS is a neurological disease. There is currently no cure although there are a number of treatments available for some types of MS. Nerve fibres across the whole of the body are coated in something called Myelin. In MS the Myelin coating gets damaged, causing messages to the central nervous system to get interrupted and stop travelling smoothly.
This can cause a huge number of symptoms, depending on where in the body the myelin is damaged:
- Physical symptoms: Fatigue, numbness, tingling, loss of sight, spasms, problems with balance, stiffness, pain, speech problems, bowel and bladder problems etc.
- Memory/Thinking: problems concentrating, forgetting things, mental health problems
Types of MS
- Relapsing remitting MS (RRMS) is the most common, where people experience a relapse and then go into remission until the next relapse (I was diagnosed with this)
- Secondary progressive MS is where the disability progresses with or without having relapses. 65% of people will move to this from RRMS within 15 years of being diagnosed
- Primary progressive MS is often diagnosed later in life and the disability progresses much slower without sudden relapses
- Benign MS where the patient experiences a number of small relapses followed by a complete recovery
Now I don’t know too much on this yet. I’m still waiting for my appointment to discuss my options. There are a number of treatments, so-called Disease Modifying Therapies. They won’t cure a patient but can reduce the number of relapses and also the severity of them. As such they are only available to patients with the relapsing, remitting type.
There are also treatments to manage the symptoms and of course there is a ton of books on how to manage MS with diet, exercise and meditation. I will do some research about this. I’m sceptical as some claim to heal you, a little ambitious! Another post one day…
What have I learned so far?
Everyone is different. Apart from the symptoms which vary hugely, everyone deals with it very differently. I wear my heart on my sleeve. I need to talk about it to help me digest and comprehend. Others might never tell a soul.
Everyone fights an invisible battle. So many people I call my friends, have now told me that they too suffer with some invisible illness. So many of my friends are in pain EVERY day and I had no idea! It has opened my eyes to how you really cannot tell what is going on in somebody’s head or body just by looking at them. I have become a lot more understanding. I would have been one of those impatient people that barged me out the way last Christmas, when I was walking very slowly through town during shopping peak times, possibly looking drunk!
MS is invisible most of the time. Nobody can see that my hands have been numb for months. I can still do most things. Crazy, how you get used to it! Nobody can see the absolute exhaustion that is fatigue. I feel the need to explain all the time to make my friends understand how I feel. But I am also constantly torn between how much I actually do explain because I don’t want anyone to see me as disabled. I want them to treat me as me. I want to be a normal as possible. It’s so confusing and a total roller coaster.
The fear. Combined with endless questions, I’m worrying a lot. How bad will I get? Will I need to give up work? Will I need a wheelchair in years to come? Will treatment work? Will my son get it? Will I become a burden to my husband one day? Some scary stuff and not easy to switch off completely.
What I’d like most from my friends and family is what they are doing already: Letting me know that they care how I’m feeling but not leaving me out of any plans, supporting me to be strong and never to give up.
The MS Society is a huge source of information, still lots of reading for me. There is a booklet for friends and families especially: https://www.mssociety.org.uk/ms-resources/coping-when-somebody-close-you-has-ms
As always, thanks for reading and I hope it has given you at least some information that you didn’t already know.