Irreverence is Justified

I’ve not been posting much about my health for one main reason, that being that it has generally been a lot better of late. I note the irony that I’m posting about it today when I’ve had a bit of a brain fog day, but that’s just a coincidence, honest. The fog didn’t really last long; maybe I just felt tired, like everyone does from time to time.

So why have things been better? Well, clearly there’s absolutely no proof about this reason, but it’s a hell of a coincidence if it is unrelated. Quite simply, I’ve been getting fitter. Initially through running, then I got my new road bicycle, and then I started playing football again.

There’s not a chance I could have played football before I started running in January. My balance problems were not massively bad, but certainly bad enough to prevent me thinking about playing. The running, for some reason, made the balance problems pretty much disappear.

Cycling has also been pretty good and is keeping me fitter in different areas. I’ve started cycling to work again, it’s only 11km and I can get to work faster on my bike than I can in my car.

Football, well I’ve only played about three times in a couple of months because I managed to injure my left knee when playing one day, apparently three people decided to tackle me at once; but if you don’t get out there and try things, then what’s the point of living. I realised that the balance had improved, so decided to try football a shot again, and what do you know, the balance has either improved, or I’ve learnt how to cope with it. To be quite honest with you, I’m 99% sure it’s much improved, rather than learning to cope with it.

Today, brain fog, and I could argue that this is because I’ve not been out running for a few weeks now, since I damaged knee ligaments. Of course, there’s absolutely no proof of this at all, but I figure it’s a possible reason and if, psychologically, I believe that and it makes things better, then that’s good enough for me.

I’m half tempted to stop blogging altogether and remove this thing, but to be honest, I’m also sceptical that this will last forever and having a note of how things have gone over the months/years is probably going to be quite handy. So I’ll leave it as it is for the time being, and if I only post once every 6 months to say “yep, things are the same as before”, then I’ll be totally happy with that.

Cross those fingers for me, if you could.

The running this week has been a bit up and down. Last Friday, I went out and did 4.2 miles in 42 minutes. Then on Sunday I went out with my sister and we only did 3.2 miles, and it felt like we were hardly going above walking pace, but it turned out it only took us 36 minutes. I think it felt easier because we were running beside a canal and therefore it was very flat. On Tuesday I went out again to try to get to 4.9 miles, but had to stop after about 3 with some quite serious chest pains. It seemed like wind, but it wouldn’t shift unless I stopped running, so I had to walk the last mile and a half back. Thankfully, I managed to hit 4.9 miles yesterday, and did it in 49 minutes. According to my Garmin Forerunner 405, I was only 22 seconds behind 10 minutes per mile at the end of the run, which I’m pleased about.

I’m still on target for the 10km in terms of distance, that isn’t looking like it will be a problem. Here’s the distances I’ve run so far:

I need to try to increase my speed though, and apparently the best way to do that is with interval training. This sounds like some serious punishment, but in fairness, there’s a brilliant straight road near where I live where I can do this quite easily, using lamp-posts to measure out distances. It’s about a mile long and quite flat, so it’s perfect.

Aside from that, I collected my new bike yesterday. Been wanting to get a new one pretty much ever since I got my last one, which was when I was ill back in 2005. Psychologically, it’s always going to be connected with that time in my life, and I’d rather forget about that time, so a new bike was needed. Also, I don’t like mountain bikes, and I’ve gone back to a road bike. Decided to get a Specialized Secteur Triple, and it’s awesome. So light, and with flappy paddle gear shifters, which might take some getting used to. And the fact that the brakes are in a different place to the last road bike I had many years ago, that’ll also take some getting used to. Took it out for 2 minutes last night to make sure I could change gears, and this thing is fast. Going to head in to the bike shop tomorrow to pick up lights, and will ride in. Should be interesting to see what speeds I can get to on it.

For no apparent reason, I decided a few weeks ago to start running to get a bit fitter. After a couple of runs, after which I felt terrible both times, I figured I’d enter the local 10km race which is in May. I’ve now been out over a dozen times and I’m able to run a lot further than before; the first four times I was out I couldn’t run for more than 12 minutes, whereas in the past 2 weeks I’ve doubled the amount of time I can run; for example, on Tuesday I went for 36 minutes. I’m not going fast at all yet, I’m clocking around 10 minute miles, but I figure I’ll get to the 10km distance and then stick with the distance and try to run faster.

The really useful thing about this is that it seems to have improved my balance somewhat. I didn’t think that running would be too much of a problem, because most of my balance related issues tend to be when I’m trying to change direction, or moving around without actually going anywhere, whereas when I attempt to go in a straight line, once I’m off it’s not a problem. Therefore, the running didn’t have me concerned. But the increase in my fitness and/or stamina really does seem to have improved things. I’m even wondering whether there’s a vague possibility that I might be able to play football again. I figure that I could have that as an aim and if I don’t manage to do it, I’ve not lost anything since I’ve not played for about 5 years. But if I could manage it…

On other news, I’m now 5 years without any alcohol and in April will be 10 years without any cigarettes. Man alive, that’s too much clean living. I shall have to find a vice.

Jo, who is now nearly 3, has had a pea sized lump behind her ear for the past week. It’s not reduced at all, which we thought it might if she had just bumped it. But considering the problem she had back in July 2008 when she had an infection of her salivary gland and it caused her to get an abcess in her submandibular gland, I’m now wondering whether she has something similar, since the lump appears to be exactly where the posterior auricular glands are, based on an image from Wikipedia.

So I’ll be off to the GP on Wednesday to see what they have to say. The wife is panicking about it being lymphoma, which of course it could be, but I’m attempting to not jump to worryingly bad conclusions just yet.

Had another MRI the other week, as I’ve been having some problems with my legs. Thankfully, the MRI has shown that my brain is in exactly the same condition as in 2007, when it was (as far as I know) in exactly the same state as in 2005. This is good news; I may be reading too much in to this, but if things are not changing on the brain front after 4 years, then that is a hopeful sign that I’m not going to be totally disabled any time soon.

I’ll be continuing to cross my fingers, though. You never know what’s around the corner. I might get hit by a bus!

Y’know, that title would have been more comical if lisinopril had been a diuretic rather than an ACE inhibitor. It was close, since both are used to treat similar conditions (hypertension, for example), but alas, not quite. Hey ho. The real reason it’s taking the piss follows.

There appears to be some news that ACE inhibitors might help us humans with MS, since they have managed to get mice with a similar (but importantly, not exactly the same) condition to radically improve when given lisinopril. So that’s good, right?

Well, it would be, except I have low blood pressure, a low heart rate (both from being somewhat fit all my life) and I am hypoglycaemic. Taking an ACE inhibitor ain’t going to do too much for me. I already have enough balance problems as it is with those conditions, not to mention the MS kicking my balance in the nuts, but ACE inhibitors are only going to make things much, much worse.

Still, I could always just eat lots of bacon to make up for it. I like the idea. The wife, not so much.

So my right calf muscle has been giving me a bit of grief for 2 days now, started on Thursday. At first I thought it was just because I’d done something to it, but it felt better on Friday morning. For about an hour, and then it came back again. Last night it was really quite uncomfortable and I wondered what would happen this morning after waking up. Same thing; it was OK for a short period, probably no more than half an hour, then it started to get sore again.

So I started to think about an hour ago as to what it could be. I figured it might be something MS related, so did a Google for that to see whether cramp, which is what it really feels like, could be an MS symptom. And of course, it could be.

I’m fully aware I’m having a relapse, it’s just a pain in the arse that I’m getting symptoms that I’ve not had before, that being the swallowing and now the cramp in my leg. Needless to say, a variety of my other symptoms are around too, not least the balance issues and I’ve had problems with my hands over the past few days too.

I posted back on 4-May that I was having a new symptom such that swallowing was causing me problems. I think that I am simply having a proper relapse, the first one for quite some number of months, as I am also having GERD problems and worsening balance issues. The swallowing issues resolved within about 3 days, but the others are still there. Unfortunately, my left hand has started to go downhill a bit, such that I’m losing feeling on the back of it. Usually it’s the palm of my hand that goes, but not this time.

Still, things could be worse. Much worse.

I appear to be having problems swallowing. I didn’t really think that MS might be the cause of this yesterday until I mentioned it to the wife who reminded me that it probably is. How pish. This might be connected to the GERD problems I have also been having over the past few years, as it is kicking off quite a lot at the moment, too.

For some reason, I’m not at my most positive when looking in to the future on the health front. I’m not entirely sure why, although it might be something to do with home life being somewhat disruptive. We’re getting our house extended at vast cost where we are literally adding on half a house on to the side of our house, although some have commented that it could be argued that we are adding a house on to our house; it’s going to be a pretty big house when it’s done, it’s fair to say.

But I think the problem is that we have been reduced to 4 rooms (2 bedrooms, living room, bathroom) for the past few days because none of the new rooms are finished yet (although they should have been weeks ago) and we have had to clear out of 3 of our existing rooms (bedroom, kitchen, dining room) because they are being extended. It’s not a good environment to be living in, and it’s starting to cause a fair amount of stress, especially for our three year old who vaguely understands what is going on, but isn’t really feeling particularly secure.

I think that all of this is making things stressful which is making my perspective on life a bit odd. Work is also pissing me off too, but I’ll not go in to that, as it’s not really that interesting, other than to know I’m feeling reasonably undervalued.

So I’m hoping that the extension gets completed soon and life can return to how it was before.

My right hand has been giving me problems for the past couple of weeks, as previously mentioned. Thankfully, it’s started to recover. I think it started yesterday and I hadn’t realised it, but today it’s definitely a little better again. While I can still feel that there is something wrong with it, it’s easing up as I can move it a little easier now, and it’s much less painful than before.

Of course, there’s no actual proof that this was an MS symptom, other than the fact that I didn’t appear to cause any kind of injury to the hand before it started to get sore. And of course there are no external marks on my hand and the pains and feelings I was getting were completely unrelated to giving it a whack against something. So maybe it was MS, but possibly not. It’s going away; I’ll not worry about it for now unless it comes back with bigger teeth.

A bit of good old fashioned harmless fun, where a bloke wins some “top torso” award. I might have to show this to the wife; but then again, maybe I’d better not as the comparison to mine isn’t so good.

My right hand is starting to get worse. Until about a week or so ago, I’d never had a problem with it.

From the image on the left (click it for a bigger version), you can see the problem areas of the hand. The inside of my hand is quite tender down the fingers (two of them at the moment) and round the palm. This has generally been the case on and off on my left hand over the past year or so.

The bigger problem right now is the back of my hand, in that three of my fingers are feeling very stiff and a little sore around the joint area. This started for no apparent reason a few days ago and has been getting a little worse each day.

The problem areas are marked in red in those pictures, in case you think those are really bad tattoos ;)

So I just need to see what happens. Or ask the neuro what I should do; which I’m not entirely sure I really want to do, because it doesn’t seem like a big enough problem to bother a neurologist about, to be honest.

Up until a couple of days ago, it had been a couple of months since I last made any MS-related posts on here. Those 2 months have been fairly standard, coping with the usual set of symptoms that have cropped up, but there have been 2 new ones that I hadn’t had before. I figure I’ll mention them here much for my own benefit in the future when attempting to remember when stuff happened, than anything else.

The first one was I had my first dead leg. At first I thought I had just hit it on something, but then realised that I hadn’t, and it lasted well over a day. I’ve had normal dead legs in the past and they don’t last much more than a few minutes in terms of the part of the leg being actually dead, and this one just lasted for ages. So that was a bit of a kick in the teeth, as that’s 2 things that I’ve had that, assuming they continue to get worse, will force me in to a wheelchair at some point in my life. The other one being my lack of balance, in case you’re not a regular reader.

The other was that I’ve had the old loss of sensation in my hand, but for the first time it’s been in my right hand. Started off over 4 fingers, then the next day down to 3, then yesterday down to 2 fingers, then today I don’t think it’s been there at all; or at least, if it has been, it’s been really minor.

Aside from that, I was asked by my Mother how I’d been of late, and she said that whenever people ask her how I’m getting on, she doesn’t really know what to say. This is mainly because I don’t talk about having MS much at all to pretty much anyone except the wife, and even then I don’t mention it that often. Aye, that means I talk the most about it on this blog, before you say anything. Anyway, she figures I just cope with what is thrown at me and just get on with it, which is pretty much how it is. It works for me; it might not work for you, but if you have been recently diagnosed with MS and you want to know the best way to deal with it, I do suggest you try just getting on with life. It’s not necessarily an easy thing to do all the time, but it keeps me sane at least.

A few people I know have had problems sleeping during their lives. I’ve generally been aware that they are not especially good at getting a good rhythm to their sleep, especially at weekends – they typically will stay in bed until the very late morning or early afternoon at the weekend, combined with staying awake until 2, 3 or 4am at night. They then wonder why they struggle to get to sleep during the week.

I’ve previously mentioned to these friends of mine that they are effectively flying to New York and back each weekend, such is the jet lag that they are forcing upon themselves. Much as we all like a lie in on occasion, having such a severe change in your sleep is only going to screw you up.

I discovered an article on Delayed Sleep Phase Syndrome which has similar theories. So I’m not completely mad, then.

Psychology and MS must be an interesting subject. I was speaking to an ex-work colleague the other day who I hadn’t seen since before I was diagnosed, and we were talking about how we’re not really that badly affected by MS (she has it too, and I didn’t know that before she left). However, we’re both affected by the psychological impact of knowing that we do have MS, and what the future might hold.

Clearly, no-one can tell someone who has MS what the future will be – and maybe that’s a good thing. I’m still absolutely convinced that knowing I have MS is for the best; if I didn’t know I had MS, I would be really worried about all the various small-ish things that keep going wrong with me. However, I’m not really that badly affected in my opinion (that said, I know people who are in a better position than I am who think they’re hard done by) and therefore the psychological impact of knowing I have MS is by far the biggest “disability” that I have.

Last week ended a little rough in that I was quite tired by the weekend. Saturday I managed to get through, but Sunday wasn’t so good – I really needed to rest up a fair amount of the day. Today, again didn’t start so well but by mid-morning I was coming to the conclusion that I was having a brain fog day. The thing is, ever since I went back on the amitriplyline, the brain fog days are much easier to cope with. To the point that I’m not actually sure I’m having a brain fog day until it resolves itself. Which it did around 15:30 today – after that, things felt a hell of a lot better and I realised I was indeed having a brain fog day up to that point.

My head does feel a lot better now. That’s the first real brain fog day I’ve had for about 2 months, which is probably a record for the past few years. Sweet.

I’m feeling somewhat tired today. It’s been a tiring couple of weeks. The wife has been in hospital about 6 times in the past 17 days following an operation and resulting infection, not to mention various trips to the GP. That said, she’s doing not too bad, considering. It’s just me that’s feeling tired ;)

Work is going pretty well. Not a huge amount to complain about, to be fair. Lots to do, I never know what each day has in store for me. That’s the way I like it. Chaos reigns, but otherwise it’d be boring.

I need to get a new photo of myself for my Facebook page, the current one is pish. I must try to do that this weekend.

Got a new monitor for my PC at home because my current one is on its last legs. Arrived from Dabs but it’s faulty, it’s had to go back. Shame, ’cause it looked good. Hoping the replacement arrives shortly.

Uhm… that’s about it. Life is doing good. Balance is pish today due to feeling tired, I guess, but I decided to leave my walking stick in my bag. Mind over matter rocks.

I’ve not been posting on here much for a while. Simply because I’ve not had that much to moan about. That’s a shocking thing to say, that I really only blog when I have something to moan about, but it’s the truth and I figure I might as well admit the truth than live a lie.

Why have things been better of late? Good question. These past few weeks I have been of the mindset to just forget about having MS and get on with life. So when I have issues with my hands, which mainly involves my right hand being really really tender in the palm and some/all of my fingers feeling quite odd, I just accept it and don’t bother worrying about it or telling anyone. Is that hiding from reality? Maybe; but the reality is that I have tenderness in my hands and thinking about it or moaning about it doesn’t actually help at all – indeed, doing those things just get me down a little bit.

The balance is the same. I have had balance issues for a number of years, well before MS was ever mentioned to me (which was 2 years before I was diagnosed) and quite a lot of balance problems since then too, but instead of talking about it to people when I’m having a rough time with it, I just pretty much forget about it. That said, I walk a little slower and I don’t turn around quickly, but that’s something I do more naturally now rather than having to think to myself “slow down, stop moving your head around too quickly, you’ll just fall over”.

It seems to have transpired that not thinking and talking about this stuff has actually made a positive difference. Also, when people ask how I’m doing, I just say I’m doing fine. I don’t bother telling people how I’m actually doing because it’s just the same old stuff now, it’s actually my “normal” state, so telling them I’m doing fine with things isn’t actually a lie. Clearly I’d love to be able to play badminton again, but I can’t and that’s life. I was playing pool against a mate last night and I can still do that without any problems, so it’s just a case of doing different things these days. Everyone has to adapt when they get older, I’m just having to adapt because I’m getting older *and* I have a problem with my brain, but that’s just the way it is.

I was also doing some reading on MS the other week which suggested that men with MS live 11 years less on average. So that means I may therefore die at 65, which is in 30 years time. That doesn’t sound so good, so I’ll forget about that too. After all, 82% of statistics are bollocks ;)

So I have another medical issue to contend with, but this time I don’t think it’s caused by MS. Mind you, the last one I discovered (actinic keratosis) isn’t MS related either; I think God is just testing me at the moment.

The latest one is that I wake up with blinding pain in my right eye. It goes away within about 10 minutes, usually before I get out of the shower. On Friday last week I managed to see what was going on. Turns out my right lower eyelid was actually folded inside such that I couldn’t see my eyelashes. Really weird. I popped it back in place and 10 minutes later, it was pretty much OK.

All very odd. Going to the optician tomorrow to see whether they think it’s something to worry about. Then on Friday I’m going to a consultant dermatologist about my “premalignant condition”. Ideally they’ll tell me they also think it’s premalignant, rather than malignant. Because the latter would be a bit of a blow.