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…

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.