Category Archives: Daily Life

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 …


An important guest post by George Pepper of 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. will allow MSers to see that they are not alone. An independent evaluation of 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. will allow MSers to quickly find people like them, near where they live, building a deeper sense of community. By plotting the location of members, meet ups and location-specific groups, will put the MS community, literally, on the map. takes online safety extremely seriously and has a clear set of guidelines to ensure people do not reveal their home address.

Please vote for 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 “” 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 now.

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Missing. Inaction …


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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Spontaneous? Give Me A Couple Of Hours …

fat faceI have been out twice this year.

With my ill relative taking up most of my spare time (what little there is of it – Teenager, Masters, Cat), this is quite an achievement.

So when my friend texted last week asking me to try a new restaurant, my first thoughts were, ‘I’m shattered, I can’t, I’m not dressed, I’m tired. I’m boring.’

Cannily, he sent the text four hours before said restaurant reservation, so I had fewer excuses, apart from the fact that I had just applied a stinging face pack and had inadvertently loaded on a good few pounds since the last time I had been out for dinner, way back in 2015.

He picked me up and we set off. I checked my blotched complexion in my tiny mirror. I tugged my hem and shifted my considerable weight in the car seat.

We got there early, so went to the pub round the corner for a drink. Reader, I have never felt more conspicuous. I was twitching with MS and my walk was funny. In short, I looked a few sheets to the wind. When we sat down, I tried to look sophisticated but got wine up my nose when my elbow slipped on the shiny table as I was holding my glass.

After our drinks, we walked across to the restaurant. It was empty. The waiter flourished menus in our faces and told us he had the perfect table reserved just for us. The one in the back corner. By the kitchen and next to the toilets.

Inwardly, I collapsed. My friend took the reins and asked for a table nearer the front. Was it me? Had he taken one look at my quivering large mass and decided I was better suited at a table out of the way? My self-confidence has taken a serious knock this year, but this was surely confirmation?

I hastily ordered and popped to the loo where they had fitted a circus fun-house mirror. You know, the one where they make you look ginormous. I turned this way and that. Ah. We have a problem. Four months of comfort-eating have taken their toll and I am now a Blob.

I quickly ran through some positive thinking mantras – ‘you are a worthy peep, you may be fat but you have a nice lovely personality, get back down there and enjoy yourself, life is short’, etc, etc.

I took a deep breath. Here goes. Well, I sailed back to the table with only one tiny foot-drop trip, sat down with a triumphant thud and had a wonderful dinner with my friend. The best this year, lol.

The diet starts tomorrow.

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Life, As Always

stopLife is pretty grim right now, as my relative is still poorly.

So what better way to cheer myself up than dropping my trousers for a couple of doctors?

Today started like any other day at the moment – escaping to work to switch off for a couple of hours. I had a laugh with the lads, scoffed a couple of biscuits and had the first of several coffee breaks until I couldn’t take it any longer.

The pain in my right leg which had started up last week became unbearable. It was badly swollen, difficult to walk on and my ankle was puffed up.

I called my lovely chiropractor and booked an emergency appointment. He took one look at my leg, prodded it and advised me to go straight to my doctor Ah. The last time he said something like that in his Serious Voice, I ended up being diagnosed with MS so I was naturally hesitant and not a little alarmed.

He checked my Achilles tendon was intact – it was – then mentioned deep vein thrombosis, DVT. Ah. Ok. So I called my doctor and was miraculously slotted in for an appointment within the hour.

I made my way over there, thoughts whizzing round my mind. I could just go back to work and forget it all? Keep dragging my dodgy leg behind me in the hope it would somehow disappear? Maybe not the best idea.

So I sat in the waiting room, being coughed over by an elderly gentleman until my name was called. In the consultation room, I dropped my trousers, the doctor took one look at my leg, prodded it and set me on the DVT Pathway, which basically meant I was booked straight in to hospital and told to go there immediately with a bundle of paperwork.

By now I was kind of worried.

At the hospital, I was seen by a doctor within five minutes, which in itself was alarming. I dropped my trousers again. He ran a probe up and down my leg and squeezed it now and again. My leg, not the probe. I held my breath. He looked at the scans. I looked at him.

I was DVT-free. I almost kissed him, but he had a wedding ring on. He told me the swelling was impressive and probably due to a snapped ligament. I hobbled out of the hospital, got to my car and exhaled.

So now I am sporting a glamorous flesh-coloured compression stocking (if you have American Tan skin) and trying to keep my leg elevated as much as possible.

I’m trying to laugh in the face of adversity, but honestly, there could not be a worse time for this to happen. Life, eh?

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