Feeling the heat

Well, last week was a scorcher.

So much so, that I gave up on Fathers’ Day activities halfway through the afternoon and went to bed for a bit. The following day, I dressed for work, drove my youngest to school, and then turned round and headed back home I felt so rough.

Again, I had an hour’s kip during the afternoon. After this I felt brave enough to step outside into our south-facing garden with some crazy idea about hanging out some washing.

Stepping out of the back door, I felt sure, was pretty similar to stepping off an aircraft in Saudi Arabia.

I turned round and went back in.

I felt so fatigued, dizzy and achey that I even Googled to see if I’d given myself cyanide poisoning. I’d made elderflower cordial, and elderflower and gooseberry jam a day or two previously and the stems apparently contain cyanide (in the same sort of way that apple pips do).

To a paranoid, heat-addled, MS-scarred brain like mine, it’s pretty amazing how similar the symptoms of MS and elderflower-induced cyanide poisoning are.

Tuesday, I was pretty much right as rain, so I ventured back to the office knowing that I could leave any time I needed to, and on Wednesday I’d booked a day off anyway to attend school sports day.

My youngest daughter’s school sports day involves a lot of standing up and moving from one event to another. The weather reports said partial cloud.

After two and a half hours of hanging around in full burning sunshine, I ventured back to my car that I’d helpfully parked about a mile away.

It was then that I found it was incredibly hard to walk in any meaningful foot-in-front-of-the-other kind of way. As I was the first one out of the school gates, I wondered what the other parents thought of my stumbling feet; feet that felt like they were made from bags of sand, and legs that felt like they were wading rather than walking.

At least I’d had the forethought of deliberately parking somewhere shady. Slumping into the driver’s seat, I allowed myself a rare emotional moment – probably no more than a few seconds, but enough to release the weight of what I’d bottled up – before turning the key in the ignition and just getting on with the rest of the day.

When I eventually got home there was a letter from Big City Hospital waiting for me. It was my neurologist to say the results of my recent MRI were back. It showed new lesions, apparently.

Now here’s the interesting thing – my neuro’s exact words look designed to set my mind at rest: ‘a small number of small new lesions compared to the scan of three years ago’. For someone who proof reads as part of their job, the use of the word ‘small’ twice in the same sentence stuck out like a luminously sun burned neck. The scan of three years ago that he mentioned had itself shown no new activity since the previous scan when I was first diagnosed, so these are the first new lesions on a brain scan of mine in nine years.

Anyway, my neurologist didn’t think this ‘necessarily need prompt a change in treatment’, but he’s asked that I come in to see him anyway ‘to discuss’.

Hmmm… all well and good if I’m being summoned to ask questions and set my mind at rest, but there’s also a little part of me that feels a little worried.

Back to Blighty blues

I’m just back in the UK after a fabulous trip to Australia and Singapore.

I don’t normally do this, but while I was away, I re-evaluated things a little. What I should be doing to make myself happier, more comfortable and healthier.

The thing about Australia is that there are so many similarities to home – the food is similar, they drive on the left, they seem to have a similar dry sense of humour – that the differences really stand out. Here are a few things I noticed:

• Jogging is a big deal – I counted 100 joggers on one stretch of path within a couple of minutes from my Brisbane hotel window one morning, and everywhere we went, I’d see people in lycra shorts, tracksuit tops etc just going about their business.
• Families and social life are a big deal. Parks, green spaces, football stadiums, museums – they all have little huts with barbecue equipment underneath for anyone to roll up and insert a coin or raised wooden picnic platforms.
• Friendliness – I was only there for a couple of weeks, but they couldn’t have been more accommodating. Even the supermarket shelf stackers were matey when pointing out the milk aisle.

Arriving back to the 70s monstrosity of Manchester Airport, the racist cab driver and people with a weary chip on their shoulder, accentuated things even more and brought me back to Blighty with a bump.

It might just be my holiday state of mind and the places we stayed, though, because I’m sure that Australians can be as grumpy, un-fit and unhappy as the best (worst?) of us. With the wide-open spaces and the better weather, though, it certainly seemed that the quality of life down under outstripped anything we enjoy.

It also probably helped, that I’d deliberately left my medication at home.

After popping that first injection when I got back, I felt a familiar weariness in my limbs that wasn’t anything to do with jet lag. My clay legs couldn’t bear to climb the stairs any more times than they had to and the energy I’d had exploring the streets of Singapore had been sapped. A day or so later I had my first big argument with a misbehaving daughter. The idea that I might get up early and start a pre-breakfast jogging routine seemed more and more unlikely.

It’s been a few days since I got back, now. I wisely took a few days off work to get over jet lag and this has been achieved more or less. But the idea that a week ago I was walking through a humid Singapore with a backpack creating a sweaty square on my t-shirt and a camera that immediately fogged up as soon as we’d leave anywhere air-conditioned, seems almost unbelievable. Particularly when you consider that I was striding through the streets with the rest of the family lagging behind and begging me for a rest.

So what can I do back home?

The biggest issues for me that I can do something about, MS-wise, are fatigue and the pain due to muscle spasms in my legs and feet. Of course, the pain feeds the fatigue and most certainly, vice versa.

I don’t take any pain medication as everything I’ve tried so far (gabapentin and amitriptyline) has given me unwanted side effects ranging from more fatigue to hallucinations. I met my wonderful MS nurse before I went away and she suggested that I give pregabalin a try, so I may do that. I guess it works on the same centres of the brain that gabapentin does though (?) so that’s something to bear in mind. She also mentioned a muscle relaxant, but that might be a bit full-on at the moment and could be a last resort.

The fatigue could be combatted by changing from beta interferon to the relatively symptom-free copaxone with the added complication of daily injections (which, perversely, might be easier to remember).

More importantly, a major contributing factor to both of these symptoms is the fact that I spend seven and a half hours of the day sitting at a computer. I don’t want to keep taking sick leave, but I easily could, I feel dreadful at the end of each working day and even worse by the end of the week.

It’s taken a long time to consider my options, and I’ve spent more than a year weighing this up as it’ll inevitably lead to a drop in wages, but I’ve requested a reduction in work hours to a four day week spread over five days. This would effectively give me a six hour working day. When you consider that I work flexible work hours anyway, this would be a dream come true, give me some much needed space and improve the quality of my life no end.

It would give me the space I need to move at a less hectic pace, to drop the kids or pick them up at school without worrying about making up the hours at work. I would be a less grumpy dad in the evenings and I’d have more time to take up some gentle exercise. I could even water my tomatoes and weed my allotment plot before heading to work in the morning. When I think of the possibilities, the image I have is suffused in a golden glow… an ideal world.

I have requested this as a necessary adjustment to my working life under the Equalities Act. I work in a large public sector organisation and everything they have done regarding my MS to date has been exemplary. I even have paid time off to attend meetings of our disabled workers group if I want to (I don’t, but that’s another story).

I made my request two months ago to the day and apart from an occupational health appointment before my holiday, I’ve heard nothing so far. No letter from human resources, no email in the inbox.

It’s a bit disappointing, but I don’t work for the DVLA, so I expect I’ll get results when I chase it up. I’ll look forward to it opening a new chapter in my life. I’ll keep you all posted.

New weirdness

Starting at 1pm or thereabouts yesterday afternoon, my right leg went cold. The sort of cold you experience when you suck on a strong peppermint and then breath in really fast. My right leg went peppermint cold. Oh and it felt dripping wet as well.

Needless to say, in reality, it was warm and dry. No incontinence to worry about, thankfully.

I have had no let-up in feeling as far as I can tell, and no L’Hermitte’s sign indicating the unlikelihood of new lesions in the cervical spine. So what is it, then? And why so sudden and so strong?

I don’t think it is the start of a relapse as my right leg sometimes has a few issues with sensations anyway. Also, apart from a mild dizzy spell, I have had no other symptoms flaring up unexpectedly.

It hasn’t been constant, either. The sensation has just returned after two to three hours hiatus.

So just one of those weird things, I guess.

Giving in

View of East Moor, Derbyshire - 8 January 2003

Yesterday I gave in.

I rang work to say that I couldn’t make it to the bus stop (one mile away up an icy hill) because of the weather.

In January 2003, I put my books to one side (I was doing a masters degree at the time), donned my walking boots and headed out of the front door to go for a twenty mile circular walk across the snowy moors.

I was pondering my future at the time, so I was in limbo as far as starting a family, or gaining proper post-graduate employment was concerned. My most immediate worries were house-hunting, coursework and finalising a dissertation topic.

My feet had instintively led me along a route I had planned on the map and imagined in my head numerous times as I had lain in bed at night.

I spent a happy day winding through local farms, along lanes that linked nowhere with nowhere, through copses, across the moors, past prehistoric barrows and back via a middle-of-nowhere pub.

I remember one particularly cool moment dangling my feet over a gritstone edge, watching the sun breaking on distant snow (see picture) while exchanging texts with a friend in her central London office.

I made it back as dusk was setting in, the fiery sun anchored to the horizon, mirroring my rosy-cheeks, satisfied and happy with the exercise-induced endorphins doing their thing.

I felt rather wistful watching the thaw setting in, dripping the branches and slushing the roads.

“That’ll be the last time I ever do that,” I muttered, quietly resolving to prove myself wrong.

Since then, a few milestones have been passed: I (post-)graduated, got married, found a job, bought a house, had two kids, lost my mother, extended my house, found a better job…

…got diagnosed with MS.

All this time, I have held onto the thought that one day, one distant crisp white snow day, I would do it all again. I would brush off my walking boots, wonder at the previous walk that had caked the mud into the soles, layer up, pull on the pack full of the day’s essentials (map, sandwiches, hip flask), and set off again across my beloved Derbyshire countryside.

Yesterday I couldn’t even get out of town.

Halfway up the local hill, the snow and ice got the better of me. Oscillopsia set in and my legs felt like lead.

Phoning into work felt like I had given up, like I had lost a key battle. For the rest of the day my legs and feet nagged at me in the cruellest way possible by feeling like they actually had walked twenty miles, but without the endorphins to show for it.

Still, I’m the optimistic type.

Part of me knows there are other factors involved – I had worn myself out after abandoning my car to the snow the day before. I had also walked, with a sledge in tow, the four and a bit miles – there and back – to pick up my kids (actually, I cheated and we caught a bus some of the way back).

I may have lost this battle, and I know that ultimately I will lose the war (how heavily or lightly remains to be seen), but there are other battles.

I am resolving again that when the kids are a bit older and I have the spare time, I’ll be taken with the urge and I will head out again across those hills.

I’m planning it now.

Unlike father unlike son

My Mum used to say that my Dad (a former cross-country runner) would often wake her up in the middle of the night by running in his sleep. His legs and feet going like the clappers. When woken and asked to explain he would mumble something about running across the fields and ditches of his native East Anglia.

I used to think that was quite sweet, and in the same way as my pet cat flying off to chase mice in the sky, I often hope that the afterlife for my Dad might include a few lengthy runs particularly as he isn’t as mobile as he used to be.

I was woken up last night. Even though I have been taking my Amitryptiline pills for neuropathic pain, my legs and feet decided to ignore them and they kept me awake for a long time in the early hours.

It’s hard to describe how neuropathic pain feels, and it’s different for different people. Sometimes they feel as if my legs are made of sponge and they are gradually being wrung out. Sometimes it feels as though they want to curl and shrivel up like a burning match. Sometimes it feels as though a large concrete slab is being placed on them imperceptably slowly by just a micron or two every minute or so.

Last night it felt like they just wanted to detach themselves and run away, running to catch up with my Dad on his ploughed field.

I’m in pain…

It’s not pain as you would conventionally know it and it’s really difficult to describe the sensation. My feet and lower legs feel like they want to shrivel up and shrink into themselves with occasional stabs of more conventional pain from my toes. I used to describe it as a crawling sensation, but that doesn’t do it justice, it is more like my calves and feet are sponges that
someone is gradually wringing out.

I have had this a while, probably a couple of years and the pain is there all the time. It normally causes what I would term chronic discomfort. In the last seven days, however, it has been flaring up regularly into toe-curling proportions. It will gradually get worse for a few hours later in the day. It can start at lunchtime or in the evening and progresses to become really debilitating. The only thing that provides relief is if I get up and walk around and I often imagine that my legs want to break away and run off by themselves. I guess it also gets worse the hotter or more fatigued I get.

Conventional painkillers – ibuprofen, paracetamol etc – are no good. I’m not keen on taking any new drugs after the experience I had with Gabapentin, so I’m going to see my GP in the morning if there is anything I can do or take for any relief.

This was written while screwing my face into contortions. Apologies if it’s rubbish.

Relapse??

I’m a bit worried I might be starting to relapse again. My optic neuritis seems to have returned in my left eye – I have been having speckled lights in my vision and pain when looking round. So far, only one large white phosphene. The other day my head went tingly as I drove home from work and I’ve had the hot cold feet and quite a severe flare up of leg pain (the ants / woodlice trying to get out).

If it’s still a concern on Monday, I will phone my nurse and ask her advice, though the optic neuritis doesn’t (so far) seem as bad as 2004.

So long Gabapentin!

With the backing of my GP, I have ditched Gabapentin.

It has been making me feel crap for a while, now. The main side effects being fatigue and hallucinations. I was starting to fall asleep by 7pm every day. As an experiment, I tried a couple of days over Christmas without taking the pills and I instantly felt better. I took my last pill three days ago and my wife has since remarked that I look a lot better and I am chirpier in the mornings.

It seems to me that while G didn’t rid me of symptoms completely, it must have had some dampening effect. My hands, feet and leg feel three times as bad as they did a week ago, and my calves and feet were excruciatingly crawly last night but – you know what? I’d rather have that than the side-effects.

Now I can be more in tune with how my body is feeling, particularly as a lot of G’s side-effects mirror (and mask) general MS symptoms anyway.

Weird new symptom alert – update

The on-and-off hot foot sensation from the other day has now been replaced with an ice cold foot. For most of my drive in to work this morning my right foot felt as if I had been kicking snow around with inadequate footwear on.

I worry about my right foot and leg. I often think that in the unlikely event that I “lose” a leg – it’s going to be the right one. Bang go my childhood dreams of playing on the wing for Man City.

I know I have at least three large patches of myelin damage in my spinal cord – the one that causes L’hermitte’s must have been subdued somewhat but seeing as I’m having bad pins and needles in both hands at the moment and a seriously fuzzy leg I’m wondering if the increased dose of Rebif (beta interferon) is having this effect. Another increase in dose next week – oh joy!

My MS History – Part One

Once somebody tells you, you have MS, you start to put a jigsaw together. You wonder whether that strange tingling sensation you had in your right arm last year had something to do with it, or in my case the vertigo diagnosis from the previous year and the little numb patch between my big toe on my right foot and the others.

It all happened at roughly the same time, but seemingly by stealth as I can’t put an exact time or even a date on it. My old office at work used to look out onto the rolling Derbyshire scenery. In the distance there was a radio mast on top of one of the hills. I remember looking up at that radio mast and hilltop one morning to see two radio masts and hilltops, but weirdly, only when I looked left. Also, when I hammered away at my computer keyboard, I noticed that my fingers felt a bit tingly. ‘RSI?’ I wondered.

I had recently had delivery of a new computer and I had shifted my workspace around and moved my desk from one side of the office to the other. When this sort of thing happens, my employer automatically sends a health and safety person round to assess how you are sitting, whether the new screen you have is causing any eye problems (“Yeah, well I do have this problem with doublevision”), or whether your seat is suitable (“Funny you should say that, but I get this strange electrical tingling sensation down my back and into my thighs when I put my chin to my chest”). The doublevision I put down to eye strain as I had other unexplained problems with my eyes a few years before (this particular jigsaw piece hadn’t dropped into it’s slot at this point).

The health and safety guy, barely into his twenties, was non-plussed. “Maybe ask your GP,” was his suggestion.

“Yeah… maybe I will”

I recounted my recent problems to my brother shortly afterwards at the football. “If you were a TV, I’d take you back to the shop” was his comment. I could see his logic, and I needed to see my GP about something minor anyway – I needed a wart removing from my lip – I could always mention this weird stuff at the end as an aside.

I saw a locum GP. It turned out that the wart was the least of his concerns. He did various tests. I had my reflexes tested, I watched his finger move left to right, I stood on one leg, I touched my nose then his moving finger then my nose and so on. He booked me in for an emergency CT scan at the hospital in the city. I should get an appointment within the fortnight, he said.

He thought everything I was experiencing was connected somehow, but wouldn’t be drawn on what it might be apart from that it could be something pressing on my spinal cord.

“Basically, where my expertise ends, someone else’s begins…” were his words, “take it easy… don’t do anything strenuous… no heavy lifting… look after yourself… be selfish… let others take the strain for a while.”

A GP has never said anything like this to me before. My previous visits had always been met with a “don’t worry about it, it’ll go away” air about them.

I thought of the heavy suitcase that I had to load and lift into the car, ready for our family holiday in a couple of day’s time. “I’m going on holiday at the weekend.” I explained.

“Where are you going?”

“Cornwall.”

“That’s good. They have hospitals down there.”

“You’ve got me worried now,” I laughed . . . no flicker of a smile on his face.

As I left the surgery, I felt the weirdest sensation. Something other-worldly, like I had been given a serious secret assignment.

I had a door with what could be a monster lurking behind it. All I had to do was find the key.