MS Awareness!!

I don’t know about you but I am fed up of the looks I get when I say ‘I have MS…that’s multiple sclerosis’ after the look of confusion I’m given I then go on to say ‘I can’t walk much, I get headaches’ and leave it at that because I just cannot be bothered to explain this in its entirety to another human being. I just can’t.

I find it so frustrating and quite mind boggling actually that in this day and age most people are still so uneducated when it comes to chronic illnesses. From this, is exactly where the ‘but you look fine‘ people come from. This is not their fault initially, fault comes when they decide not to read up on it and learn more themselves.

Official definition of Multiple Sclerosis (google); a chronic, typically progressive disease involving damage to the sheaths of nerve cells in the brain and spinal cord, whose symptoms may include numbness, impairment of speech and of muscular coordination, blurred vision, and severe fatigue

I’ve set myself a little challenge and that is to reach people that have no idea what Multiple Sclerosis is and break it down, simplify it A LOT and help those people understand or grasp the concept of the disease so they are better equipped if it came up. It is MS awareness week and if I reach one person I’m happy so I will literally explain this how I explain it to my Nan every week when she asks ‘what’s that thing you have?’

Multiple Sclerosis or MS for short. This means the layer protecting my nerve is actually damaging it so MS can affect me in many ways, wherever there is a nerve in the body there is a risk of MS doing its worse.

But what does it do to your nerves I hear you ask?

It does just about all it can to make life harder. You can’t see the damage or pain it causes but please believe me when I say it doesn’t stop. Every person with MS experiences different symptoms and because of this it is referred to as the snowflake disease. MS for me has caused:

Fatigue: So imagine waking up after the best sleep and feeling exhausted and it just gets worse and harder to deal with throughout the day. Imagine having 100 bricks in bags tied around each foot and still trying to get on with day to day tasks. Imagine having a 10min shower and needing a 3 hour sleep afterwards to get over how difficult that was for you. This is fatigue.

Weakness: This one might be easier to understand, any part of your body may become weak, you find it hard to use that part of your body. It is constantly making your body feel inadequate.

Pins and needles: This can be constant for some. Just imagine constant prickling taking over parts of your body. Have you ever sat on your foot for too long? it is likely you have had pins and needles before. That numbness that creeps up first then that feeling of 10000 tiny pins and needles prodding and poking you. I don’t want to leave that there though because we also get feelings of millions of tiny ants running around our bodies too. Just about any sensation that exists, theres a good possibility that we will feel them at some point.

Vertigo: Ok so let me set the scene, you are on a fairground ride, it spins so much you can’t even see straight, you feel nauseous, your head is pounding and you are so dizzy. Then the ride stops and you get over it- except that isn’t the case for us. Imagine moving your head to look at something and getting this feeling or sitting up too quickly and getting this feeling. Imagine just about any household duty and how much you would move your head while doing it- now imagine how vertigo might feel because its there affecting everything we want to/ try to do.

Balance: I cannot stand on one foot, I actually struggle to stand on two!! I could easily be mistaken for a drunk person the the way I sway while trying so hard to walk. It sounds funny but not having any balance comes with it’s problems.

This just names a few of the never ending list of possible symptoms MS comes with. I’ve learned to accept that it is highly likely I will end up in a wheelchair because my legs are so bad now. MS creates personal problems as well which I won’t go into but my symptoms alone haven’t even touched the sides when it comes to explaining the complexity of this disease. MS hurts, MS is constant for me personally, MS makes life much more of a struggle but I’ve learnt to soldier on as best I can, so yes I look ‘normal’ but if I was turned inside out the story would be very different, it would be much more apparent. MS is a chronic illness, it is an invisible illness, meaning you probably cannot see it but it’s there and what we need is people to understand that we do need some help, we do need some patience, we are not always ok.

My day generally consists of waking up (exhausted), trying to sort the kids out while my head pounds continuously, I avoid sudden movements because vertigo will kick in and make the head and everything worse. I waddle around the house, holding every piece of furniture or fitting that I can to help me move around without falling or creating more pain in my legs which have felt non existent (and painful and prickly) since diagnosis in 2013! If I venture out its straight to the car to go to another house where I can sit down. I avoid going places or doing basically anything because MS makes it so hard and quite unbearable to be honest.

All I want is for better understanding of this disease and its effects, how it makes us feel and genuine interest in finding out more on how you can possibly help or be there for somebody who has MS. So those funny looks or just pure rudeness that comes from people when I use my disabled badge for example that could stop if this awareness is pushed to reach as many people as possible.

Kim x x