It’s been a while..

I knew I hadn’t updated this blog for ages but I didn’t realise the last time I had anything to say was September 2015.

I’ve been busy caring for an elderly relative (now in residential care) and editing a poetry journal (now resigned), so I’ve either been exhausted or lacking the will and free time to exert myself with anything less pressing unfortunately.

My MS could also be described, to nick Viv Stanshall’s genius description of Rawlinson End, as ‘changing, yet changeless as canal water’, so it might be a year or two before I realise that anything has changed significantly enough to report on.

So what’s new? Three things mainly…

Firstly, I had a relapse involving optic neuritis about a year ago which kicked me into safe mode for a few weeks and I took some time off work. It’s a symptom that hasn’t really bothered me much for over ten years so for it to kick in was a bit of a shock (and painful to start with). All better now apart from a bit of noise in my vision.

Secondly, I’ve lost a stone in weight. I asked my GP to refer me to my local council-run sports centre a while back to try and get myself in shape. I didn’t have the time to do that, though, as already described, so I just put myself on a strict diet of my own devising. This seems to have worked. I’ve also recently taken to waking up at 5am to go for a run round my local neighbourhood (just a couple of miles each time). It’s a good time of year to do this as you have to keep moving to avoid freezing solid. The only other people around at 5am are milkmen, gritter drivers and people who either commute long distances or care about their careers too much, scraping the ice off their windscreens.

Thirdly, I was referred to my big city hospital’s urology department to sort my rapidly deteriorating bladder problems which were a massive drain (‘scuse the pun) on my quality of life.

I’ll cover the last two points in forthcoming posts – bet you can’t wait.

Until then…

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The best drug

I’ve just had a weekend home alone while my wife and kids went to visit friends in the North East.

As usual I had a list of jobs to do and as usual I missed their company.

On the Saturday I made a concerted effort to finish everything. I tidied out our garage making a couple of trips to the tip. I chopped up some wood for kindling, I also changed all the beds and did all the washing, sorting out and putting away all the dry things from earlier in the week.

Jobs done, I treated myself to a curry and had an early night.

I didn’t sleep well, I never do when I have the bed to myself, and I eventually got up at about 7am with a blistering headache.

I had promised myself that I’d go for a run in the early hours as part of my gradual easing-myself-into-getting-fit campaign, but the headache was going to scupper that one. I’d probably slept funny, judging my the pain in my neck muscles, but it felt like one of those dehydration headaches that you get when you’re hung over. One that feels like your brain has shrivelled up like a prune.

I downed two ibuprofen, put the kettle on and ate a banana, thinking…

I was up early for a Sunday and I had time on my hands. If I couldn’t go for a run, why not go for a brisk walk instead?

I’m lucky enough to live on the edge of town and there’s countryside only a ten minute walk away.

So after I’d finished my cuppa, I put on my waterproof and I was out of the door.

Fab! Typically for a Sunday morning there was no traffic and no-one about, just a bloke jogging to start with.

It wasn’t long before I found an old farm bridleway that I used to frequent when I was doing my masters degree and needed to escape, some eleven years before.

At one time I had walked every footpath in that area, but it was so long ago, I’d forgotten half of them existed. I had to remind myself that the vicious looking dog that used to live in one of the farms was most likely dead by now. Some of the eccentric architecture of some of the buildings came back to me like a nice surprise as well, like the un-nervingly tall but thin house standing on its own on a muddy lane or the old rickety house with the stone tile roof.

It was lovely, the sky was still starting to brighten and with my headache now gone. A fine rain dampened my hair. The smell of mud and leaves filled my nostrils. The birds were singing, and a cow stuck its head out of a barn and watched me as I went past.

I said “good morning” to a handful of dog owners. I even shared a laugh with the owner of a large black Labrador that had run, leaping and body-checking me – something that would have frightened me silly at one time.

After about an hour of walking in what had become a steady drizzle, it occurred to me that a strange, yet familiar feeling was engulfing me. Something I seriously haven’t felt for perhaps years.

I was deliriously happy.

Half an hour later I returned home with a box of mushrooms from the local shop. I reckon I walked for about six miles. After cooking up brunch, I sat down, plate on lap, and opened up my Woody Allen box set. I watched Manhattan.

A while ago, I wrote on this blog about a sixteen mile walk I had once done in the snow, a few years before any big relapse and way before I was diagnosed. I wondered whether I’d ever repeat that, whether I’d ever just pull on my walking boots to hit the hills, pocketing an ordnance survey map on my way out of the door.

I’m not altogether sure I will, in terms of distance, but I have resolved, particularly as the days get longer, that if I can’t get back to sleep post-4am, I may just have to cut my losses and make the most of the early hours.

I’m not saying that I’m unhappy, but there are stresses and strains in everyday life that can build up and drag you down, particularly when you have a chronic illness and perhaps can’t manage everyday life in the same way that you used to.

I guess I’ve just resolved to take advantage of that me time while everyone else is buried beneath their duvets. Endorphins are the best drug and I fully intend to become addicted.

Getting fit with Mr Uhthoff

This isn’t a new year’s resolution, but I have decided to get fit.

This incorporates a couple of in-built problems, the most obvious being the MS, of course, but the second being the fact that I don’t do personal trainers (I have to admit to being quite rude to the only one I have ever had) and I don’t do gyms.

Therefore I have been taking to the roads for the occasional run in the hours of darkness.

Regular readers will know that I had a spate of evening runs last year up on the nearby moors, but this time it’s serious.

Why? Because it’s winter and I can push myself a bit further each time without overheating and I’m slightly less ill than I was last year, so the repercussions of Uhthoff’s phenomenon aren’t as great. Also, because it’s dark I can run incognito (it takes a while before I get over my self-consciousness).

I have been out three times in just over a week and I have lost two pounds in weight. I want to lose about a stone overall. Plus, as you can see in my post “Giving in” I need to build up my stamina.

I am trying to build up to five mile runs with a few hills thrown in, so far I have progressed as far as a two and a half miler on the flat with a sprint for the last 100 metres or so.

I am comparing this year’s training to the last time I did some serious regular running three years ago. The 2007 fitness regime took place a year and a bit before I was officially diagnosed, so I have only realised in retrospect that the experiences I had then were due to MS.

Back in 2007 I experienced a numb leg and a rubbery burning smell afterwards which I whimsically attributed to having burnt-out some electrics in my head as I was running (not realising how close to the mark I was). I would also get oscillopsia on my longer runs.

The last fitness regime tailed off when my youngest was born. So far, as far as Uhthoff is concerned, I have been a little wobbly legged after each run, but this has diminished each time I have been out. I have also had ‘slow eyes’ for a while after I finish (so I am expecting some oscillopsia when the longer runs kick in). I still have the peculiar burning smell too.

I have been doing some reading up and now know the burning smell is phantosmia – an olfactory hallucination – and is quite common for people with epilepsy as part of the pre-fit aura or with people who have brain injuries in the part of the brain that interprets smell. I guess I must have demyelination here.

My ideal, is that one day (this year or next) I may (NB: may) do a 10k run in aid of one of the UK MS charities.

My current thinking is that I will be supporting the MS Trust for the support they showed me in terms of the excellent free information they sent to me when I was diagnosed.

With this in mind, I have been consulting the MS Trust’s superb online training information. It is well worth checking out even if you don’t have MS as they include clearly written information and training schedules for beginners as well as more experienced runners.

I’ll keep you posted on how I get on.