Mourning sickness

I recently heard that it’s a good idea to find something to mourn with MS. Something in life that MS has taken from you.

Maybe it’s a good night’s sleep, or the ability to run a long distance or that you’re no longer the party animal you once were. It could be all sorts of things…

Well, I realise this is going to sound bizarre, but I miss being sick.

What I mean by this, of course, is being sick in a conventional sense.

The sort where you spend all day under the covers and concentrate on not moving; where you can settle back into a snuggly bed after a mammoth hurling session* and feel momentarily better in a fuzzy, numb, dozy kind of way.

The sort where life is taken out of your hands for a bit: no work, no kids, no school run, no washing up, no trips to the supermarket, no responsibility at all except to get better. In fact, maybe your other half will pop in any minute now to tenderly mop your brow, plump up the pillows and ask if you need anything.

The other day, I had a smile listening to one of the younger members of staff in our office fretting about job references and the fact they’d had 11 days off sick over the previous 12 months.

Ahh! I suddenly came over all nostalgic for my 20s and how I used to sometimes ring in to work sick on a whim.

While some of these were sick days precipitated by a sudden and debilitating lack of strength involved in the lifting of a warm duvet, and some were the sick days that were self-inflicted by the social event from the night before, there were some actual genuine cases. One food poisoning incident sticks in the mind, particularly.

OK – I’m not seriously feeling nostalgic for food poisoning, but going back further to my school years for instance, I remember slow days of no energy and a gradual build up of nausea with some fondness. Feeling better again and rediscovering food has to be one of the best things in life. Opening a full fridge as a teenage boy on a mission to repopulate an empty stomach is like being handed a golden key to a mystical land of endless opportunity …and last night’s leftover pizza.

Gloriously, there was a day in my teens when I was horrified to find a face full of what I assumed was acne, only to be told by my mum that it looked very much like german measles, that I had a fever and there was no way – NO WAY – I was going to school that week.

I remember nodding sagely, “OK Mum, I’ll just head back to bed,” but with the internal me punching the air, shouting “YESSS!!!”

While I’m a big believer in taking sick days if you genuinely need them (and I know several people who will bravely soldier their way in to work to selflessly redistribute their germs), I haven’t had one for a couple of years. Not bad for someone with MS, eh?

I put my fortitude down to the fact that I’m more in tune with my body than I have ever been before. I am painfully aware that I’m no longer the invincible teen or twenty-something I once was. I am also hugely grateful for working for the sort of employer that lets you work from home if you’re feeling a little bit dodgy, or fatigued, or could do with stretching out in your joggers rather than getting into your work clobber and driving (in my case) the 10 miles to the office.

I also need to keep my sick leave in reserve so that I take it when I genuinely need it and not make a name for myself as someone with the sickness record of a 25 year old.

The drawback to this, of course, is that you might feel obliged to work even if you’re really not up to it. If you’re the cynical sort, it can seem a sneaky way for an employer to get you to work when you should really be taking it easy.

The last time I was off for any appreciable length of time for something non-MS related was when I had taken about 2 and a half hours to drive home in blizzard conditions. A journey that normally takes 15 to 20 minutes. I had successfully and narrowly avoided a collision on a steep downhill; I had dug the front wheels out of the snow when I came to an unavoidable standstill, and after some loud encouragement from a passing RAC driver, crawled (or rather, slid) the last stretch home only for me to suddenly develop something deeply unpleasant and gastric about 5 minutes after entering the front door.

Politely declining my snow-day elated daughters’ offers of a snowball fight, I rapidly ascended the staircase to spend the next couple of days yo-yoing between bed and bathroom. It was either all triggered by the stress of the journey home or my body putting it all on hold until I was somewhere safe.

Of course, when you’re that sick and you also have MS, yo-yoing to the bathroom sounds like an ideal you can’t achieve. It’s more a case of being as still as you possibly can because if you twitch a muscle, vertigo might kick in, and if vertigo kicks in, you have approximately 10 seconds to reach the place you need to get to, to do what you need to do. In those 10 seconds, your legs might turn jelly-like and behave like those of the newborn Bambi on ice as well. There’s no instant relief either – it’s all about trying to ignore the MS symptoms that will have crashed back in.

So I’m mourning being sick in a conventional way… or maybe I’m craving last night’s pizza.

If you have MS (or any other chronic illness or disability) let me know what things you are mourning in the comments .

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* not a session hurling mammoths.

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.

Making lemonade #2

Way back when I started secondary school, a rumour went around that all the boys would need a medical during the first term. This would involve a procedure where a nurse would hold our testicles while we coughed.

This never happened, of course, but a part of me believed it. It made the eleven year old me unduly anxious to say the least.

I often think about how cool it would be to be some sort of guardian angel to my awkward, shy, younger self. I’d put a supportive arm around my own shoulders and whisper something into my ear… some mature advice to make me feel better: “That thing about a nurse holding your bollocks? It won’t happen. It’s utter nonsense… ha ha! Just you wait another 30 years.”

Fast forward to the other week…

I’ve learnt a new skill!

It involves passing a foot long length of tubing into the most sensitive and private part of my anatomy.

The first time I did it, I had my trousers round my ankles, while a nurse (female), who I’d met for the first time barely 20 minutes previously, looked on, rubbing my shoulder in a supportive, encouraging manner.

Yes, I have to catheterise myself at least twice a day, now, due to the fact that I retain approximately one pint (500ml) of urine in my bladder, even after visiting the loo. The urology nurse who came to visit told me that anyone who regularly holds 400ml of urine is advised to catheterise (the MS Trust say anyone holding more than 100ml), so I fall (un)comfortably into that bracket.

I’ll be performing this procedure for approximately… hmmm… how many months? Oh wait!… The rest of my bloody life!

I’ll be honest with you. The first few days you try it, it isn’t easy to do. I winced each time at the prospect of threading the tube into such a seemingly tight space. I also had to change the type of catheters I was using as the initial bendy latex ones were causing too much pain and I was finding blood in my urine. Plus I found them as easy to hold as a live eel. But two weeks on, with stiffer, differently lubricated catheters, it’s a lot better, and I feel a lot calmer doing it.

So has it worked? Do I visit the loo less urgently? Do I go less often? Do I finally have an unbroken night’s sleep?

The answer to that is yes and no.

I can’t describe how crestfallen I felt on the first night. After painfully tubing myself before going to bed, I woke up at 2am, 4am, and then 6am desperate for the loo. It was as if nothing had changed. Nothing except for the fact that I now had to perform some sort of low level surgery on myself.

After a few nights of this, a phonecall to my MS nurse and a visit to the GP meant that I’ve started taking solifenacin tablets to relax the bladder muscle and reduce the urge to pass water.

It’s early days still, but I mostly wake up with my bladder just once a night now (and I catheterise when I do). During the working day I might make a trip to the loo, two or even three times in my six hour shift, instead of three times an hour, so to me, it’s an unbelievable turnaround. In the daytime I couldn’t be happier. I’m getting to be friends with my bladder again and it turns out he’s quite a nice guy.

There’s still the element of waking halfway through the night to contend with, though. I wonder if part of it is to do with learned behaviour. Perhaps my body automatically wakes up at regular points during the night and now needs to be retrained. I’ve tried to combat the night time loo visits by cutting down massively on the amount of caffeine I take in and the drink of water I have with my evening meal is often the last liquid to pass my lips every day.

It’s early days on the pills, though. Tomorrow marks one week of taking them and the GP told me it takes about seven days for them to kick in (the MS Trust says up to four weeks), so we’ll see how it goes. I don’t remember the last time I managed to sleep through the night without waking. The day I finally do, I’ll be partying.

The day has arrived

Hurrah!

Today I have a spring in my step.

Why?

I’m officially a part-time worker. I started work at 9am and I’m just leaving for home. It’s 3pm.

I have a pair of shoes to pick up for my daughter and then I’m picking the kids up from the childminder at 4.30 which gives me a little extra time to chill, and to start getting dinner ready.

In seperate news, this morning my six year old daughter said “Daddy, I feel like a grown up.”

“Why’s that then?”

“I’m really, really tired.”

I guess that reflects badly on us as parents, doesn’t it?

Ho hum! Hopefully my new hours will help dispel that concept.

I’ll keep you  posted on how it works out.

Your flexible friend

Well, I thought I was going to have a struggle. I even met with my union rep at one point, but I’m pleased to announce that it’s nearly here: I’m poised to start reduced hours at work.

This means I’ll work 30 hours over a five day week. Coincidentally, this works out at six hours a day, which is the legal maximum for working without a break. I’ll still be in work five days a week, so won’t lose any annual leave and I’ll still have the social contact with fellow workers that a part-timer wouldn’t.

On an uneventful day, this means I can start work at 9am, as usual, but leave at 3pm. Working for an organisation that values work/life balance also means we can throw flexi-time into the mix as well. So on a good day I can do a 9 to 5 and on a rubbish day I can leave at noon if I want to.

It’s an ideal arrangement for a disease like MS.

It’s also ideal for numerous other reasons: I can plan in the kids’ sports days and concerts. I can water my allotment before I go to work. I can pick the kids up from school as well as the usual drop-off. On days when I’m feeling groggy, I can sit in my kitchen and pump strong black coffee into my system before deciding whether I can face the journey into work. On snowy days (I live in a hilly semi-rural part of the country) I can let the morning rush die-down while I decide whether to risk the roads.

My kids will see more of me. I’ll be less grumpy and more lively in the evenings and weekends and just generally happier and more willing to do things requiring energy.

My wife is very supportive My family and friends think it’s a great idea. My GP thinks it’s a great idea. When I told my MS nurse she beamed at me and said “oh good!” When I mentioned it to other part-timers at work they cheered, like I’d joined their team.

It all sounds so good, doesn’t it? I will obviously benefit, my kids will benefit and my employer will benefit. My productivity is likely to increase as I won’t feel as crap and I won’t be sitting at my desk wondering what I’m doing there.

There is, however, one major stumbling block.

It’s not the admin and the sorting out of start dates. It’s not the attitude of fellow workers who seem broadly supportive (one of my co-workers, who has ME already does this), but it’s a psychological one.

The amount of money I’m about to lose per month seems like a high price to pay for an increase in flexibility, no matter how rubbish work sometimes makes me feel. I know we’re not on the breadline, but it does seem awfully selfish and no matter how you look at it, the money I’m about to lose would pay for a very good family holiday every year.

I’m mentally storing up the reasons why I should do it. I think the best argument I’ve thought of so far is: would I accept the same amount of money to work an extra one and a half hours per day, making it nine and a half hours in work every day.

The answer’s a resounding “no”

Please feel free to post other good reasons, or things I can do with the extra two hours of me-time I’ll have each day (the dafter the suggestion, the better).

 

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.

Hindsight

My first big relapse was in 2004 with a numb face, a headache that wouldn’t shift, optic neuritis and vertigo.

It’s strange to think of it now, but the medical profession couldn’t explain the cause at the time. Probably because I presented the symptoms individually, rather than all in one go.

I then experienced a few more symptoms in the following few years that tied in with the diagnosis of my MS in 2008. This was when I had the mother of all relapses that left me with the doublevision I have today.

Because of the missed diagnosis, I’ve often wondered when the start of my MS really was. Until recently I believed it was 2004.

Now I’m not so sure I can put a date on it.

In the late eighties, for instance, I had some very dodgy visual symptoms that tie in with optic neuritis and Uhthoff’s phenomena as they followed midsummer cross country runs.

Then I remember there’s a bit of a gap between 1987 and 2004. Seventeen years with no symptoms at all…

…but last night I found some evidence to the contrary.

If you ask my wife, she’ll verify that I’m a bit of a hoarder (I prefer the term self-archivist). I was sorting through some old papers in my loft last night. Among them were some old pay slips, timesheets and sickness forms from when I lived in London. It was in the sickness forms that I discovered a referral to my then occupational health department in 1998.

The reason? Doublevision!

This, of course, is the very symptom that returned ten years later to make me seek serious medical advice.

Not just doublevision though, eye pain too, which sounds like a dash of optic neuritis thrown in to me.

I only have vague memories of all this, as this happened fifteen years ago. I seem to remember a workplace assessment giving the reason as eye strain, which explains why I didn’t pursue the 2004 wierdness when that’s how it was explained to me again.

It does lend some creedence to the idea that my MS is a lot older than I, or my doctors realise. It effectively expands the timeline by six years.

My mission, now, is to find further evidence. To see if I can fill in the gaps between 1987 and 1998. I kept a diary on and off in the late eighties and early nineties, and I have a box of old letters, so I’ll be interested to see if that brings anything to light.

I have a few unexplained medical issues that are still a bit vague in my memory from that time, so I suspect it might provide a few enlightnening memories.

It won’t change anything, of course. It won’t change my current situation and it won’t inform my treatment. One thing it will do though, is satisfy my curiosity.

It will have contributed largely to the person I am today.