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.

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Mild relapse?

I have been on beta interferon (Rebif) for nearly two years now and in that time I haven’t had a relapse.

Or have I?

Beta interferon is supposed to reduce the likelihood of having a relapse and minimise the effects if you do get one. Back in January 2009, when I came off gabapentin, I experienced a temporary worsening of symptoms such as fatigue, pain, heavy legs and one instance of flashy lights in front of my eyes. Was it a minor relapse as the neurologist thought? Was it the side-effects of coming off the gabapentin? Or was it the underfoot rumbles of the MS volcano?

I don’t know. I suspect all three depending on when you ask me.

I have a similar thing going on at the moment. In addition to the usual symptoms, I have had a couple of weeks where I have had a worsening of pain in my arms especially, mild spasticity in my left arm and both feet, hands that feel as if they are gently transporting a cactus as opposed to the usual background tingle, heavy legs again, fatigue, mild vertigo, uncontrolled movements in my calf muscles and last night, definite phosphenes in my right field of vision as I moved my eyes around.

So is it the hot weather?

Is it the MS Monster rolling over in it’s sleep?

Or is it a mild relapse?

I’m not inclined to bother anybody about it until my next yearly meet up with the neuro. My neuro is “running late” this year, apparently. Running late in the sense of he can’t see me in June as would normally happen, but will be able to when his appointments begin again in August, and the 115 people in front of me in the queue have been seen first.

In the meantime, I have restarted taking the amitriptyline.

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.

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.

Relapse spotting

Well, I guess this goes to show how difficult it can be to spot a relapse, sometimes.

I spoke to H (my nurse) today about the optic neuritis and heavy legs that I have been experiencing over the last few days. She thought the optic neuritis sounded like I was experiencing a small relapse, but the heavy legs and the ‘cactus gloves’ I am wearing may be related to coming off Gabapentin.

I am to “take it easy and see how I get on”

I thought I would make a list of things that had flared up over the last month or so:

  • optic neuritis – lights in my vision (currently) and pain when moving my eyes (last Friday to Sunday)
  • stiff heavy legs – currently finding it difficult to walk (up hills especially)
  • foot switching itself on and off repeatedly – hot then normal then hot etc. (before Christmas)
  • the same foot going excessively cold
  • occasional tinnitus – right ear (since early December)
  • dizziness – no vertigo head rush, yet, but I lost my balance a couple of times today and either bumped into things or nearly fell over
  • my head has gone tingly a couple of times
  • I felt very lethargic on a number of occasions since the New Year, but nothing I would class as chronic fatigue
  • an increase in the amount of insects who seem to want to escape from my feet

I can go to hospital to be checked over and prescribed more steroids if I need them. I don’t really want to do that, though. H also advised that I take some time off if I feel any more crap than I do now, and I don’t really see that happening either.

Strangely, as I typed this, I experienced a tightness across my chest that may or may not be the “MS hug.”

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.

Life with MS – Part Two – Medication

I have been dosed up this year, like I have never been dosed up before.

I mentioned in an earlier post that having MS is a little bit like having an uninvited monster following you round everywhere (mine has been clinging onto my right leg all morning). In order to stop the monster from suddenly flipping and getting all aggressive on me, I need to give it some drugs. The main ones are:

Steroids:
The first drug prescribed was a massive one-off dose of steroids (methyl prednisolone). To give you an idea – patients with severe asthma are sometimes prescribed approximately 40mg of this steroid every day to combat whatever it needs to combat for them. I took 500mg per day for 4 days. This was in order to fight the inflammation in my brain and give my body the kick start it needed to repair the myelin damage in my brain and spinal cord.
Benefits: it cleared up a non-MS related dodgy knee
Side effects: bad indigestion for a week, nasty metallic taste in my mouth, short temper (just ask my family), increased appetite (despite the heartburn) and therefore weight gain.

Gabapentin:
This is an anti-convulsant normally given to epileptics, but can apparently help nerve pain in MS patients. I take it for the pins and needles, the ants under my skin and any other nerve-related pain that I am experiencing. I think it was supposed to help my eye problems as well. I am gradually working my way up to the full dose of these (900mg a day) which I should be on by Christmas – I am currently on 600mg per day.
Benefits: I am not up to full dose yet and it’s still early days but I get the odd window of normal sensation in my hands every now and then and my L’Hermitte’s sign has cleared up
Side effects: Drowsiness – I feel very sleepy in the evening and sometimes during the day. Hallucinations – I am seeing quite a lot of things that aren’t there – I saw someone standing in a corridor at work the other day staring at me, when I looked again it was a filing cabinet – along with movement glimpsed out of the corner of my eye this is getting to be a fairly frequent occurence.

Beta Interferon:
I inject this under my skin three times a week (Mon, Weds, Fri). I am currently on a 22 microgram dose which is increasing to the full dose tonight (44 micrograms). The purpose of this is to interfere with and suppress my body’s auto-immune system to stop it attacking the myelin around my nerve cells.
Benefits: supposed to increase the time between relapses and make each relapse less severe. It is too early to tell with me, but I’m glad I’m on it.
Side effects: Not up to the full dose until this evening which is when the fun supposedly starts, but I have already had achey muscles and hot flushes. I inject before bedtime so that I can sleep through any nastiness but I can feel a bit crappy on Tuesday, Thursday and Saturday mornings (aches and hot sweats). The injection sometimes leaves a bruise too.

Immunisations:
Because of my suppressed immune system I have already had my flu jab, and I am expecting to have jabs for meningitis and something else (I can’t remember what).

Omega 3 for vegans and vegetarians:
I made a diary entry, just over a year ago where I equated taking Omega 3 with improved cognitive performance. I noted that I was more able to “think on my feet” and wasn’t forgetting as much stuff. I think it probably co-incided with the start of a remission period, but I reckon it’s worth a shot, so I have started taking it again.

Ibuprofen / Paracetamol:
to combat the effects of the Beta Interferon.

Of the drugs above, I may take the steroids again next year at some point, depending on my symptoms and the Gabapentin is under review. It is a “dirty” drug apparently so side effects are quite common. If my body gets used to it, fine, but there are other drugs I could try in it’s stead.