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.

Giving in

View of East Moor, Derbyshire - 8 January 2003

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.

My MS History – Part Six

After one more session of double-checking with the consultant where he had yet another student in tow – it seemed I was becoming a textbook example of nystagmus – it became apparent that the steroids really hadn’t done their job. So to suppress my existing symptoms I was prescribed Gabapentin.

I had been given details of Disease Modifying Drugs (DMDs) prior to this meeting and using the MS Decisions website, made my choice which I was going to spend the foreseeable future taking…

… and then I made it again.

Rebif it was – sub-cutaneous injections three times a week but with the downer that it had to be kept in the fridge.

Eventually a large box with all the gubbins turned up along with my monthly courier. By all the gubbins, I mean travel cool-bags (one large, one small), rebijector (injection pen), supporting literature, diary, “passports,” sharps bin, injection site cushion (that I could heat or freeze), and the medication itself.

Two weeks at 8mg and two weeks at 22mg, and then I could expect a delivery of the 44mg syringes.

I have been relatively side-effect free, but I did get a couple of instances of flu-like side-effects with Rebif.

The worst day of side effects happened when I had the mother of all hot flushes. One January morning at 6am, I stepped out to my car in just a summer dressing gown, surprised that it was quite mild, only for it to be minus seven when I checked my in-car thermometer later.

The Gabapentin, meanwhile, had turned me into a zombie. Not only that, but a zombie who occasionally had disturbing hallucinations.

Being a vegetarian and not at all into human flesh eating, I decided to ditch these drugs, for the good of my (and everyone else’s) sanity. I had “accidentally” forgotten to take them for a number of days, and while my hands started to feel as though they were holding a cactus again and my legs started feeling like they were made of lead, I felt more mentally alert and alive. I hadn’t even reached the full dosage.

In fairness to gabapentin, I have since found out that I work with someone with on a much higher dose than I was ever going to take, who said that they have no side-effects at all with it.

I went to see my GP and while he was thumbing through his British National Formulary for a suitable alternative, I told him that I wanted to give Amitriptyline a go. He agreed and I have been on these ever since with no side-effects. They make me a little drowsy late on, but that sends me to sleep nicely. They also help with the leg pain and the tingling.