Category Archives: Daily Life

The Ugly Spectre Of MS

noThe Teenager collapsed last week.

As with most teenagers, he had his phone glued to his hand at the time and managed to text me in work:

‘can’t get off the floor, come and help me. I’m scared’.

I couldn’t get there straight away so sent others, who managed to pick him up off the floor.

By the time I arrived home, he was marooned in his bed, in pain and confused.

I took him to the GP and the chiropractor.

The evening before, we had been in A&E with extreme nerve pain. And were referred back to his GP.

Some tests were run.

He has been referred to a neurologist.

He mentioned a few symptoms that made my blood run cold.

He has been working out at the gym. That will be it?

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Kicked The Basket, Stayed Calm …

don't take me homeI worked the whole bank holiday.

I didn’t mind too much; I’d had to stay at home during the height of the sudden heatwave and had ploughed my way through numerous box-sets on telly, fanning myself with one of The Teenager’s discarded school files.

I was hot, bored and bothered. MS heat intolerance is miserable.

Friday was The Teenager’s last official day at school. Ever. I unpinned his timetable from the notice board in the kitchen with a deep, sad sigh. I woke him up for school for the last time, waved him off to his last ever school assembly, with his last ever lunch money in his pocket. He popped back briefly a couple of hours later and I daubed his face with camouflage make-up, hung dog tags around his neck and waved him off again.

He was taking part in the Sixth Form Leaver’s tradition – a pub crawl around the local area, ending up in the city centre. This year’s theme was ‘military’ (last year’s was ‘American Football’). There’s a long road between pubs outside my house and every year I see the endless line of kids walking past, chanting loudly. Perhaps with Manchester in mind, watching the procession of students walk past dressed in various forms of khaki, singing ‘Don’t Take Me Home‘ made me cry.

That was 2pm. I heard him come back home at 3am, rise again at 5am and leave to get the train/bus/tram to Manchester to watch one of his favourite bands at Old Trafford. Plus, he’d remembered to lock the door and let the cat out. Impressive.

Anyway, on my way to work this morning I stopped off at a local shop to pick up some lunch. I was wandering around the aisles, debating microwave lasagna vs. chicken pieces when, wham, I went flying. Foot drop? Nope. Someone had left an empty basket in the aisle, one of those wire ones, so not readily visible. I picked myself up, a little bruised and embarrassed. I heard laughter. I turned round and the woman at the counter was looking at me and … laughing.

Not asking if I was ok, not coming over to help. She stayed behind the counter. Laughing. I kicked the basket. It knocked into a display of sun-cream (Are You Protected?) which wobbled a bit and a few bottles fell off. I kicked them too, the irony of sun cream too much to bear.

I picked up some chicken pieces and went to the counter. She was still laughing. I asked if she was serious. She said, ‘You wha’?’, raised an eyebrow, finished checking her phone and rang through my items with a studious boredom that was actually pretty impressive.

I got to my car. Took several deep breaths. I should have gone back. I could have kicked myself along with the sun-cream.

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If You Can’t See It …

invisibleOne point amongst many brought up during the Taxi Driver Case, is that invisible illnesses can be tricky.

That’s not to say a more visible form of MS than mine is any easier – far from it according to the large amount of emails I’ve received, in which people have told me taxis simply drive past them when they see a wheelchair or walking sticks.

It just seems harder to ‘prove’ you have a disability if, at first glance, there’s nothing ‘wrong’ with you. However, some place the number of people with chronic conditions which could be deemed invisible as high as 96%. Whether or not that is true, it is indicative that there is more understanding needed.

This can take a tragic turn, as in the case of Brian Holmes, who was killed with a single punch in 2013 after another man took exception to him looking ‘like he could walk’ when parked in a disabled space at a supermarket. Little did he know, he was the driver for his wife – who was disabled, and had a blue badge – and who was shopping at the time. What he also didn’t know was that Brian was days away from an all-clear from cancer.

Cases like this show just how difficult it can be to judge who is disabled or not. On the flip side, I live near a busy shopping area; on weekdays, parents park in disabled spaces as they are one or two metres closer to the school than the plentiful other spaces, and ‘what’s the harm?’. On weekends, car after car parks in the supermarket disabled spaces, as they are ‘just popping in, what’s the problem?’ In the morning, builders vans park there, as ‘disabled people are lazy and don’t have to get up early like we do’.

These quotes are real; I’ve spoken to these people. They become aggressive, threatening and abusive. Such are the feelings disabled parking can arouse. Last year I called the school where the majority of parents took their children to. I spoke to the headmaster, who told me in no uncertain terms, ‘it’s not my problem’. I have also raised the point with my MP, who said he would look in to it.

Disabled parking spaces are there for more than convenience. If you are ill and finding it difficult to get out, it can be a smidgen of hope that after the palaver of getting ready to go out, you can just about be guaranteed to find a space. Granted, this is not always the case, but the hope is there. It’s psychological, apart from anything else health-wise.

It’s all too easy to languish at home, constricted by health, lack of parking and society’s attitude towards you.

You make people uncomfortable. And that’s all the more reason to be seen.

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Please vote For Shift.ms …

shift-ms

An important guest post by George Pepper of shift.ms:

Shift.ms is an online community where people with Multiple Sclerosis can come together to support each other and share practical advice.

A diagnosis of MS often leaves people scared, anxious and isolated. We believe that the best way to combat these feelings is by helping newly diagnosed MSers talk to the people who know best – other MSers. Our community was founded in 2009 and now has over 11,000 members.

We’re currently bidding for funding from the Aviva Community Fund in order to develop an interactive map on our website. The map will help members of our community find other MSers near them so they can meet up, form new friendships and gain invaluable advice and support.

Map.ms will allow MSers to see that they are not alone. An independent evaluation of Shift.ms showed that although members receive a great deal of support online, they would also like to meet face-to-face. We believe that being able to meet up in person will do even more to reduce the mental health problems that so many MSers experience.

Map.ms will allow MSers to quickly find people like them, near where they live, building a deeper sense of community. By plotting the location of Shift.ms members, meet ups and location-specific groups, Map.ms will put the MS community, literally, on the map. Shift.ms takes online safety extremely seriously and has a clear set of guidelines to ensure people do not reveal their home address.

Please vote for Shift.ms in the Aviva Community Fund to help us get the funding we need to build the map. Voting closes on Friday 18th November at midday (GMT), so please take two minutes to follow the link, register, search for “Shift.ms” and cast your ten votes. We think it’s an amazing opportunity for the MS community and we’d really appreciate your help in making it a reality.

Please vote for Shift.ms now.

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Missing. Inaction …

inactionWhoah.

This relapse (spike in symptoms/exacerbation/whatevs) has drained me.

After falling face-first into some gravel, things have progressed steadily downhill.

Plates have been flying, I’ve become intimately acquainted with every wall in my house – and discovered every sneaky cobweb – and to top  it all, vertigo descended yesterday and has been plaguing me ever since.

These last two weeks have been an exercise in containment – getting away with as little as possible to keep up the facade that I’m ‘doing OK’.

I’ve cancelled meeting up with friends. I have a birthday present to deliver that’s now three weeks overdue. I won’t be taking guitar lessons for the foreseeable (long story). Life, for the moment, consists of a need-to-do basis.

I had an initial meeting with my dissertation tutor and I agreed to hand in 7,500 words of a novel by mid-September. Lol. I’ve written just over 100. To be fair, they are excellent words and it’s just a shame there’s not more of them.

I’m becoming a little fed up of lying on my sofa after work with a Dulux paint chart, eyeing up the walls, just to pass the time of day. I’ve bought a tonne of gossip magazines, caught up on my Sky Planner and watched a wide range of subtitled films. My head aches.

I hate being forced to do the minimum; I am a doer, not a wait-er. I would rather drag myself to work than lie in bed. However, I might just be made to do that very thing, and fairly soon. The endocrinologists agreed today that after two years of yo-yo medicines, I will have an operation to remove my thyroid, as I developed Grave’s disease, a 1-in-3 chance of having Alemtuzumab treatment.

It was a chance worth taking, but the logistics will take a little working-out. Two weeks off work, unable to move my head and the possibility of a husky voice; the last one seems a fairly benign symptom though. Mariella Frostrup?

Anyway, as always, life has to go on and I am co-ordinating from The Sofa HQ. I watch the hours passing on my clock. I go to work, get home, collapse, go to sleep, get up and do it all again. Why? I don’t have a choice.

Today, I met a new endocrinologist. He was reading through my file as he ushered me into the non-soundproof clinic room.

He said to me, ‘Wow, for someone with MS, you do a lot, don’t you?’

‘Yes’, I answered.

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