The Daily Fight with my Invisible MonSter
One day, back in 1990, I went blind. For three days I couldn’t see out of one eye. I was under a lot of pressure with work and studying for a post graduate degree while raising my 11 and 8 year old girls. It wasn’t easy. The doctors said it was just ‘one of those things’, probably a trapped nerve or anxiety or something. So I rested and things went back to normal, after which I never gave it a second thought.
Little did I know that that was my first ever Multiple Sclerosis attack, at just 38 years old, and that twenty five years later I would be registered as disabled.
At the time there was no reason why anyone would think I had Multiple Sclerosis. I did yoga, ran around after my kids, went out dancing with my friends and walked for miles. I felt fine. Yes, I had a strange choking cough that no one could figure out the cause of, and I was clumsy and had bouts of exhaustion – but don’t we all?
But after seventeen years of my health deteriorating without explanation, and no cure for my strange conditions, I couldn’t ignore it any longer. A doctor eventually pieced together all my strange symptoms and found the answer.
I was officially diagnosed with MS.
I was petrified, yet relieved to finally get an answer; but I still had no idea what Multiple Sclerosis was. All I knew was that my maternal grandfather had suffered from MS and had died a terrible death before I was born. I was told it wasn’t hereditary (even though my sister was later diagnosed with it too), I was also told I couldn’t die from it and my girls would probably be fine. So I did all the research I could about the subject and learnt that it’s one of life’s Invisible Illnesses.
MS means our immune system starts attacking the myelin sheath which covers our nerves; meaning that nerve damage leads to messages from the brain short circuiting and being directed to the wrong places or sometimes nowhere at all. This in turn leads to all manner of symptoms – but unless I use a stick, crutch or wheelchair you would never even notice.
Now, at 63 years old, my MS is progressing and showing itself in many ways, albeit mainly unnoticeable to most except me.
My MS (yes, we take ownership of our MonSter) is ‘Relapsing Remitting’ – which means it comes and goes. A ‘good days, bad days’ sort of thing.
“But you look so well,” people say.
What they mean is, “You don’t look ill, are you sure you deserve that Disabled Badge?”
“Well yes I do, actually,” I want to say. “But you can have my parking space if you want my MS too.”
Here are just a few of my invisible symptoms
Balance
I once stumbled and staggered into a guy as I came out of a restaurant. He laughed and said, ‘I’ll have what she’s having.’’ Really? You want my MS? Of course he thought I was drunk, although I’d only had a Diet Coke.
It’s just that I can’t walk straight any more. I intend to walk across the room but end up walking into a wall or furniture. Taking steps means one foot is off the ground for an instant, so my balance goes and I find myself flat on my back like an upended tortoise. Which is always great fun.
I look at people strolling, striding, sauntering and running and think, ‘It looks so easy, so why can’t I do it anymore?’ Now I need a stick or a friendly arm to hold on to so I don’t weave drunkenly down the road and bang into people.
Spasticity
A scary word, which essentially means ‘muscle cramp’. We all get leg cramps, but muscles that cramp in your arms and chest are not nice. The MS Hug is a cosy name for a hellish chest constriction that feels like a heart attack. My legs often twitch and kick too. The result: I had to buy a King size bed so I don’t kick my husband in the night.
Numbness
We all know what it’s like when your leg ‘goes to sleep’ or you get pins and needles, right? Well this is different. This is having to look to see if you have two socks on or none at all. You can’t tell the difference.
I once got into a full bath with socks on because I couldn’t feel that I was wearing them. I’ve also had a wee wearing knickers as I couldn’t feel them either and presumed I’d taken them off.
The medical term for this symptom of feeling things that aren’t there is ‘altered sensation’- which (for me, at least) means the following:
Thinking there is glass in your shoes, when there isn’t .
Feeling like you are walking on sponge, when you aren’t.
Feeling like your feet are in a bucket of freezing cold water, when they are in fact warm to the touch. Feeling like your legs are wrapped tightly in cling film, and they are absolutely so numb that I could stick pins in them and not feel a thing.
I can still walk with all of this going on, but I look like I’m wading through treacle.
To the outside world I appear ultra clumsy when I drop, smash and break everything I touch – but the truth is my hands feel like I’m wearing boxing gloves and I can’t even do my shoe laces up any more. I’m careful not to buy things with buttons or it takes hours to dress myself, and later I’d only end up ripping the buttons off in frustration.
Pain
Yes, MS hurts. It hurts like hell sometimes. Everyone hurts in different ways and yes, there are some meds that help for the immediate pain.
Cannabis helps, but it is illegal even for us (at least it is in the UK). Scientists have even invented a legal cannoid (cannabis-based) spray for pain and spasticity, but I’ve been refused it. Apparently it’s too expensive for the NHS in my area – yet another example of the unfair ‘Postcode Lottery’.
On a bad day my legs hurt like I’ve run a marathon, my ankles and hands are stiff and painful and although it’s agony I still do my physiotherapy exercises as instructed so my muscles don’t seize up.
The worst is when I am woken up in the night with the sensation that someone is sticking a knife in my leg (or arm) every 10 seconds. This is generally accompanied by another sadist giving my leg an electric shock every few minutes, which causes me to twitch and jerk and jump.
I often find myself sitting up all night, as an attack can last for hours or even days. Crazy nerve signals can also cause my smooth skin to feel like it has been sunburnt then continually rubbed with sandpaper. At night it’s a struggle to even let the covers touch me. During the day wearing a bra and pants is agony, but seeing as I have to wear clothes to work I have no choice but to put up with the pain.
I have practically OD’d on every painkiller ever invented but nothing touches these bastards. I just have to get on with it and hope it will pass quickly – because the thought that it won’t pass is just too hard to contemplate.
Vision
I often get double vision without having a drink. This means I can go to sit on a chair that isn’t there and end up on the floor. Something called ‘nystagmus’ causes my eyes to involuntarily move side to side, hence me walking into door frames and walls and misjudging slopes and steps and of course, ending up on the floor again.
Occasionally I open my eyes in the morning and the room is upside down. I shut my eyes again, breathe deeply and say a quick prayer before daring to open them again. Occasionally a virtual curtain comes down in front of my eyes and I start losing vision, but I perform the same old trick and my vision comes back. It’s just my brain getting in gear and the nerves playing tricks.
Fatigue
MS fatigue is not ‘I’ve had a late night’ tired. It’s even beyond ‘I’m exhausted, I haven’t stopped all week’ tired. No, this tired is ‘I’ve finished a 20 mile run on the hottest day of the year carrying rocks in my backpack after two sleepless nights’ tired.
You can’t fight this tired, you can’t even have a coffee or a Red Bull and carry on. Some days I just about make it through the front door after work before collapsing on the bed, unable to move from the sheer exhaustion.
Swallowing
Did you know that we need 50 pairs of muscles and a load of nerves to be able to put our food in our mouth, chew and swallow? I have ‘dysphagia’ which means some of my muscles are not getting the right messages and are not working properly.
So I choke. I choke on air, saliva and food. Don’t be offended, it’s not your cooking and please don’t rush to do the Heimlich manoeuvre on me, it won’t work. People in restaurants stare at my family accusingly as they just get on with eating their meal, not giving me a sideways glance (they have seen it a million times before). There’s nothing anyone can do to help as I cough and splutter in a most unladylike way and hopefully reach a loo where I can cough, spit and maybe vomit until it passes and I return to the table, red faced, red nosed and always apologetic.
Speech
These swallowing muscles also affect speech, so I slur and can’t pronounce my words properly when I’m tired. I must be getting a reputation as an old lush, what with my slurring and walking like a drunken sailor.
And the final, most difficult symptom, of my MS?
FEAR.
I never know how this awkward bitch will progress. Will I be in a wheelchair next week/month/year? Will I be incontinent if my bladder or bowel muscles freeze? Will I have to be fed through a tube if my throat muscles seize up? Will my foot drop and not want to lift again? Paralysis might start creeping and there’s nothing anyone can do. And my biggest fear – regardless of what the medical professionals say – will my daughters or granddaughters inherit my MonSter one day?
This MonSter is different for everyone and, regardless of what I have shared with you today, I still feel incredibly lucky to be so little affected…unlike many of my friends with MS.
I am independent. I can walk, drive, cook, shop, and even work part time. I know how to pace myself and what meds work for me. I have a supportive partner, family and friends. I have never known discrimination in the work place and I’m lucky to live in a country that recognises and helps those disabled by invisible illnesses, both financially and medically.
So I wake up each morning and hope for the best. I take my vitamins and the medication I am given, I do my exercises and meditation and I get on with the life I love.
And when someone says “Hi, I haven’t seen you in ages. How are you?’’
I say, ‘’I’m fine.’’
Yes, I have MS…but MS hasn’t got me.
(Note from The Editor… Thank you to our Guest Writer for sharing her brave story with us. If you would like more information about Invisible Illnesses Week visit www.invisibleillnessweek.com. To support the MS Trust with all their hard work in bringing awareness to Multiple Sclerosis and raising funds for further research into pain relief and ultimately a cure, visit www.mstrust.org.uk.)
Family members of our Guest Writer are running the London Marathon this year (2019) raising money for MS-UK.org. If you would like to donate, you can find their Just Giving page here.
