World MS Awareness day

Didn’t hear about it? I’m not surprised.

So how can I write this without sounding like I’m teaching a class or lecturing you. I’ll have to put some of the basics on but I think I’ll try and tell you what MS means to me.neuron

MS or Multiple sclerosis is a chronic, degenerative, neurological disorder. In other words it affects the nervous system, it steadily gets worse, it never goes away and there’s no cure. It’s one of the many “invisible illnesses” that anyone can be afflicted with, you could walk past someone in the street or even work with them and not have a clue they have it.
multiple-sclerosis-s2-definition

In simple terms for someone who has MS, their immune system is attacking the coating of their nerves for reasons that scientists are yet to clearly define. If you think of the nervous system as electrical wiring and the myelin coating like the plastic coating of electrical wires. When the myelin is destroyed on our nerves, the signals no longer get through properly if at all, just like when an electrical wire is stripped it shorts out the circuit.cns diagram

Since the nervous system controls pretty much all of the body this means that someone with MS can have symptoms ranging from loss of sensation and pain to losing control of the muscles anywhere in the body. Along with these we can be affected by memory or emotional problems and something we tend to refer to as “brain fog” where concentrating on even the simplest task is nigh impossible. I’ve got to mention the unmentionable and tell you that yes MS affects the bladder and bowels as well as sexual function but don’t worry I’ll leave it at that 😉

There are three main types Relapsing Remitting MS where you have relapses where the damage and symptoms are worse then remissions where things calm down again, if not go back completely to how they were. Secondary Progressive MS and Primary Progressive MS are both forms where there is a general deterioration of ability with less distinct points where the damage is happening.
Science lesson over for now, I promised to make this more personal.

My life was changed forever by this disease back in 2007 when I began struggling with my balance and nausea, a year later and I began losing my vision.

I’ve never been so scared as when I began to lose my vision.

The GP I had at the time was useless, even though the opthalmologist recommended I see a neurologist and I knew from the pattern of my vision loss that the problem was close to my occipital lobe, he tried to palm me off with “wait and see”. £150 trip to a neurologist privately proved me right and luckily the neurologist worked for the NHS too so put me straight onto his books and transferred me over to begin the journey to find out what was happening.

I could walk you through my whole journey but I think it would bore you, so suffice to say 3 relapses in 6 months, 2 neurologists, 1 MRI scan, 2 Lumbar punctures, 2 weeks of high dose IV steroids later and I got diagnosed with Multiple Sclerosis. I was given a choice of disease modifying drugs, taught to self inject and began a regimen of thrice weekly injections.

Have you ever heard that ignorance is bliss? Well I can vouch for knowing too much being hell. I had studied the nervous system at university, an irony that I can look back on and admire now, but this meant I had studied the worst case scenarios of a multitude of Neurological disorders including MS. I knew enough to be terrified of what might happen, but not enough to know that those “worst cases” did not necessarily include me.

So lets get past the point where I panicked and quit teaching, where I was ready to give up on life completely, to when I accepted this was going to be a part of my life but that I still had a lot to offer and was determined to keep doing what I could for as long as I could.

MS is a horrible thing to live with, but we CAN live with it. I’m nearly a decade down the line from the first major symptoms I exhibited. Yes over the years I have been slowly introduced to taking enough tablets to make me rattle on a daily basis but they keep me moving and control some of the more unbearable symptoms.toby
I can still walk, if slowly, not too far and with a stick. I will keep walking as long as I can! My dog and I still enjoy a constitutional to meet some furry friends and get some fresh air.

I can still see even if I have to admit it’s nowhere near 20/20 and sometimes when I’m tired too foggy to drive so I have to be sensible.

squares and pouchesI can still use my arms, though they’re weaker than they were and my hands tend to be clumsy. But I can still type, cook, crochet and knit which I do for myself as well as making things for charity which makes me happy and feel like I’m doing something good for the world.

I can still talk and those people who know me will vouch that I do at every opportunity! Yes I struggle to find the words sometimes and I stumble, stutter and get confused but I still do it. I have never been an operatic singer but I still sing to myself in the car and my kitchen, apparently it’s good for helping keep the throat muscles working so a great excuse to belt out some tunes.

My mind is still my own, I can think, solve problems and a lot of random information is still at my disposal. I struggle to retain new information like names etc. but I keep trying, I still enjoy reading, watching programs, learning things I can bore people with. I may become confused when I’m tired or stressed but I’m determined to keep exercising my mind and not lose it.

In other words I’m still ME. Daft, annoying, needy and geeky me.

MS has changed my world in so many ways, I’m not where I imagined I would be in a million years and I do sometimes still wish that plan had worked out but really who can say that their life is exactly how they expected it to be 10 years ago.

The one thing I would ask of the world is understanding, for people to at least have a passing knowledge of what MS is just like depression, anxiety, autism, diabetes, parkinsons disease, motor neuron disease, epilepsy and all the other invisible illnesses that people cope with day in and day out.

One day all people with MS hope that there will be a cure and a way to repair the damage that has been done, until then we will keep plodding on and keep trying to live as best we can.

 

 

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