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.

6 thoughts on “Back to Blighty blues

  1. Don’t forget all that lovely vitamin D you will have been absorbing whilst enjoying the sunshine! I’m pleased to hear you had a really good holiday. I like Australia too, although I have a friend from Brisbane who emigrated here who will be happy to tell you how small-minded, racist and unpleasant Australians can be too, albeit in a much better climate. I like Australians, but I actually found that Kiwis (we went there directly from our trip to Oz in 2010) were even more to my taste – a bit less brash and a bit more understated and ironic. I liked that. Better coffee too, and great beer. Anyway, I digress.
    The change in working conditions – if HR ever get to you, and surely even they must be more efficient than the bloody DVLA – sounds like it should be a good thing. You can but try it, eh?
    Nice to have you back and blogging, anyway.

  2. Having just written on another blog today (the excellent stumbling in flats) that I was avoiding MS blogs, well….It will be true again, tomorrow.

    1: Pregabalin- I had horrific nightmares at a fairly low dose and was sceptical when my neurologist suggested changing to gabapentin, as aren’t they first cousins? However, he was right. Almost no trouble to date. I found pregabalin more convenient dosing-wise and probably better at dealing with the neuropathic pain, but the hallucination issue was the deal-breaker for me. I hope the reverse works for you, if that makes sense.

    2. Copaxone: easy peasy, simples…you get the drift. Should be renamed Inject and Go; takes me 20 seconds, initially was a bit stingy at the injection site, a few minor discolouration at injection sites, but my bikini days were over anyway. Stingy sensation disappeared after a few weeks. The only problem I experienced with copaxone was if taken at night, I’d have insomnia and after a few weeks, seriously unpleasant dreams. Apparently an uncommon, but recognised side effect. Solution? Injection time switched to first thing in the morning, before 11 or else! Mega bonus of decreased number of relapses.

    3. Decreased hours/working from home. Can you enlist the support of your Occupational Health doctor? He/she can then write a letter to HR, cc-ing you in and moving things on pretty quickly.

    Hope this helps.

    1. Thank you honeysuckleb

      I’ve been told by my GP, consultant, nurse etc that pregabalin and gabapentin work in a similar manner and affect the same parts of the brain, just that pregabalin was more expensive and a bit like a ‘gabapentin-lite’.

      Gabapentin turned me into a bit of a zombie and like you on pregabalin, I hadn’t reached the full dose. When the hallucinations turned from little flickery lights and odd movements to repeatedly mistaking a filing cabinet for an old man, I knew it was time to look for alternatives. Conversely, I have a workmate with epilepsy who takes gabapentin on a dose triple to the dose I was ever going to take and he’s never had a side effect from day one.

      Good advice on the copaxone – I have trouble sleeping most nights so that’s definitely something to bear in mind – thanks!

      The occ health have already told me they can’t recommend revised hours, they can only report what I tell them and make recommendations on the layout of my work station and home working. This seems bizarre, so my plan is to involve my consultant and/or GP and/or union if things don’t start moving.

      Thanks for dropping by!

      1. No worries!

        I found download useful: Proving disability and reasonable adjustments, Tamara Lewis esp p126 and the intro. It’s always valuable to know the law!

        Good luck.

  3. See, it’s helpful comments like that that makes interacting with other MS-ers online so worthwhile. It doesn’t all have to be misery and woe-is-me, does it? we’re all different, but we’re all in it together.

    1. Absolutely – couldn’t agree more!

      I’m sure your Australian friend is right – that was certainly the pre-conception I travelled out there with. I was coloured by a holiday euphoria all the time I was out there, I suppose. When people found out I was British they generally laughed and reminded me not to mention the cricket or they said they dug the accent. At the Aussie rules match I went to, my Man City top was complemented, so I was probably quite lucky. The only person I heard use the word Pom was the friend I was staying with while we watched the Old Trafford test match. He’s very Australian but also aborigine and immediately (and unnecessarily) went to great pains to explain how he used Pom as a cricketing nickname and not as a term of abuse.

      We also met plenty of kiwis all escaping the New Zealand winter and earthquakes on the Sunshine and Gold Coasts, one couple (in their 80s) invited us to their apartment for drinks and had an enviable world knowledge. They seemed to have been to more corners of the UK and Ireland than I have.

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