- A Dose Of Reality (the startling contrast in my emotions during my visit to the House of Commons and meeting people with Muscular Dystrophy in their lives)
|Hinge & Bracket, not Margo & Sarah|
The entry below is Margo's work; I found it informative, utterly readable, concise and thought-provoking so I've not edited any of the words nor changed the flow (but the colours and bold text are of my doing to highlight the points that caught my attention). Please take the time to read it as I promise it's worth investing 2 minutes of your life.
"Multiple Sclerosis is the most common acquired neurological condition in young adults. It’s most often diagnosed between the ages of 20 and 40, although increasing numbers of children and teenagers are now being developing it. About 100,000 people in the UK have MS. It’s about twice as common in women as in men. I was diagnosed with MS in 2005, at the age of 43, though I’d probably had it for at least 15 years at that point.
But what actually is MS?
It’s an auto-immune condition: the body’s own immune system attacks the brain, spinal cord and optic nerve, leaving scars called plaques or lesions. This potentially causes symptoms anywhere in the body, depending on where the damage is.
If you think of the nervous system as an electrical circuit, the MS lesions cause the circuit to fuse in places so that signals don’t get through at all, or else distort.
So, for instance, I might want to move my leg – a perfectly sound ambition, I’m sure you’ll agree. There’s nothing wrong with my leg. All the muscles and joints are in perfect working order. But the message “Move!” doesn’t get from my brain to my leg.
Also, my brain interprets signals coming back from my body in the wrong way. My arm (let’s say) is fine, but I experience dreadful pain, or pins and needles, or numbness there because of damage in my brain.
The symptoms of MS are hugely variable. If you asked 100 people with MS, you’d get 100 different sets of symptoms! They can include visual and balance problems, fatigue, dizziness, stiffness, spasms, pain, and problems with memory and thinking.
Many of the symptoms of MS – including some of the most distressing, like pain, fatigue, or bladder and bowel problems – are invisible to an observer. This can cause a lot of problems. I’ve heard of, and experienced, partners, family and friends doubting the validity of what’s being experienced.
Many people find “fatigue” particularly difficult to communicate. Everyone’s been tired, and it’s hard to explain how MS fatigue differs from this everyday experience. I’ve seen MS fatigue defined as “an overwhelming feeling of weakness”. I describe it as being like if the house was burning down, I couldn’t move to get out.
I have very bad fatigue, so I can’t often get out. Much of my day is encompassed by the sofa, the telly, and chatting to (or up!) online acquaintances on Twitter and Facebook.
When I do get out, to the theatre, a gig, shopping, for a hospital appointment, or just to meet friends for a coffee, the planning involved takes far longer than the outing itself. How will I get there? Is the venue accessible for me in my wheelchair? Do I need a carer to help me get around? The previous day I need to rest, and for several days afterwards I’ll be unwell.
Developing MS doesn’t have to end your life. But it’s often a very different life from the one you had planned and hoped for before. The MS Society helps and supports us emotionally, practically and financially, and with advice about care. It also invests a huge amount into research about MS – £156 million in today’s money since 1956. They do vital work."
I'd like to publicly thank Margo for taking the time and making the effort to do this; there was I looking for a little addition, some injection of the humour that makes Margo irresistible reading on Twitter, but her fatigue means she couldn't and when I received the tweet from her saying so, I felt stupid, guilty and selfish for not recognising just how sh*t some days can be for her, for Sarah and others with MS.
So the next time I'm stuck in bed with man-flu (albeit a very serious thing), the next time I wonder if I can be bothered to get out of the house and train for my North Pole Trek in the rain or nag someone else for a donation to charity when the last 127 people have all said no, and the next time I'm just too darn lazy to do something I take for granted, I'll remember how lucky I am not to have MS and I'll push myself to DO what needs to be DONE.
A bit like tonight; with my eyes burning with tiredness for the last 2 hours I was still determined to write this blog entry (despite my PC playing up too). Why? Because even if it only makes a small difference to lovely people like Margo, Sarah or the woman at the gym ..... it's bloody well worth it.
Bedtime now but soon it will be time for: -
- A blog entry from Daniel whose brother passed away recently from Muscular Dystrophy; a chance for Daniel to share his perspective of living through such a trauma
- Hopefully an entry from someone I once knew who, on the outside. seems the very opposite of the stereo-typical Samaritans user but, quite literally, they saved her life about 12 years ago. Something as equally difficult to comprehend but yet another dose of reality.
I hope these entries continue to create a big response.
Sleep tight. x