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.

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.

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.

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’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 it’s been three weeks since I last posted on here appearently. It’s flown by.

It transpired that Jo didn’t have the mumps, instead she had an infection in her salivary glands and this then caused an abcess in her submandibular gland which had to be operated on under a GA.

She’s a lot better now, thankfully.

Other than that, I had another set of “symptoms” kick my ass during the week, but it seems to have passed now. I had the pins and needles in my right hand, mainly in my palm, for about 3 days, plus I had myokymia in my right eye for a day and my balance went a little haywire in the middle of it all. Hey ho.

Things currently appear to have calmed down. I’m now remembering how to play the Maple Leaf Rag by Scott Joplin, which I’ve remembered three quarters of during the week; I learnt it many years ago but have forgotten it, and since I don’t read music that well and learn everything by ear, it takes me a few days to remember it all again. But I’m getting there. After that, I’ve decided to learn Fantaisie-Impromptu by Chopin, mainly because it sounds dead tricky but I suspect it probably isn’t.

And finally… I have been watching avidly as Federer gets knocked off his World #1 position. What I couldn’t understand was why the entire planet had forgotten how to work out ATP rankings as everyone, including the ATP themselves, seemed to think that Nadal needed to win in Cincinnati to get World #1 when Fed went out early. I spent a couple of days wondering whether I just couldn’t add until everyone then realised that players drop points when they do worse in a tournament compared to last year. So I felt a little better after that. And watching Murray demolish his opponents on his way to the final has been somewhat handy, especially because it was only a couple of months ago I was wondering whether his temper was going to get the better of him. Today he plays Novak in the final, and it could go either way, to be honest. I’m sitting on the fence on this one for a change.

I’ve long thought that I had issues with my balance more when I’m somewhere that I’ve not regularly visited. This isn’t the only case – I also get unbalanced on days when I’m quite tired, and on other days for apparently no reason. But I have wondered whether I’m imagining things when I’m somewhere unusual.

So this morning I was at Tesco which is slightly unusual, in that we’ve been using their home delivery service for many months. I used to go there every week for many years, so it’s not as if I don’t know the place; I know it backwards (except when they change which aisle they put things in – grrrrr). However, this morning I felt really unbalanced in Tesco. I think part of it was to do with the large amount of people bustling around, not that they were bashing in to me though. I’m really not sure what’s going on, just that I felt really quite unbalanced when I was there. I wasn’t feeling like this before I went, but now, even though I’m home again, I’m still feeling a little unbalanced; not as bad as I was in Tesco, but still a little unbalanced.

I do wonder whether I’m imagining all of this – if I’d not been told I had MS, would I be feeling this? Is it all in my head? That said, if I hadn’t been told I had MS I would likely have gone mad by now because it was clear that there was something wrong, but for years no-one could tell me what it was. So maybe I’m better off like this.

Who knows. Anyway, it’s not exactly life threatening, this unbalanced thing. It’s not the most pleasant thing in the world, and it stops me doing certain stuff (playing football and badminton, bending over to get things quite as readily as I would have done before), but it doesn’t stop me doing stuff I need to do. So I just get on with life. This is, after all, my new state of “normal”.

Last week was a pretty heavy one again at work, and this made Sunday and Monday a bit of a wipe out. The head was pretty much not up to working that well yesterday, whereas Sunday I was just really pretty tired. However, today I was feeling nearly back to normal again, which was greatly helped by getting a decent night’s kip. Oh – that’s the other thing, of course; there was a bloody seagull sitting on top of our house @ 3am on Sunday night which kept me awake too, and it didn’t really help the mood much yesterday either.

Hey ho.

Fourth, and last. There’s one on next week but I have a resident’s meeting with my neighbours and, to be quite honest, it will be more worthwhile.

The meeting this week was on pooing and peeing. Believe it or not, we were told how to sit on the toilet when taking a dump. No, I’m not kidding. We also got shown a chart about what different types of poo look like. Again, I’m not joking.

Some of the people in the room really need to go speak to a psychiatrist or psychologist or psycho-analyst; there is a lot of tension being held in and needs to be let out in some way. Even if I didn’t have something else on next week, I doubt I’d go simply because I’m really not getting anything out of it – except for knowing that a guy at my church, who also has MS, was right; don’t bother going to meetings with other people who have MS as they’ll just depress the fuck out of you.

You live, you learn. I’m going back to live life and try to forget about MS for as long as I can.

Am I reading this right?

Adult Stem Cells Offer Relief from Multiple Sclerosis.

Seems too good to be true. One has to wonder how much, if any, of a control group they were working with.

This week it was about diets.

Summary: there’s no evidence about anything to do with diets and MS. Sorry.

Aside from that, we got told to eat healthily and, well, watch a video with Lorraine Kelly. Sigh.

Only half the people turned up this week, compared to full houses the past 2 weeks. I’m starting to see why.

Next week we learn about peeing and shitting. I can only wonder what we might get told.

Another week, another MS Group Meeting. This was the second one in the set of five, the main topic of which was to be fatigue.

I managed to arrive on time, well, 10 minutes early, this week. The main speaker was a physio who deals with MS patients in her job. She talked about fatigue, triggers for fatigue and managing it. To be honest, it was all pretty basic stuff. Also, the “triggers” for fatigue were pretty much what you’d expect if you were healthy; doing too much, excessive heat, too much stress, not getting enough sleep. And how to deal with it? Don’t do too much, don’t go anywhere too hot, don’t do shit that gets you stressed and get enough sleep. Wow, I thought – I hadn’t thought of that.

Sheesh.

There was one MS person there who did a hell of a lot of talking about their symptoms. This person is clearly attempting to win the “I’m the most disabled out of the lot of you” prize. No matter what anyone else had in terms of symptoms, she had it, and worse. You should have heard the descriptions of how hard a time she was having walking; sounded like she could hardly stand up, never mind get out the door. So when the physio asked what walking aid she used, the woman admitted she didn’t use one. Now, I don’t consider myself badly off at all, but I had a good mind to reach in to my pocket and hand her my folding-up walking stick at this point. I just figure she was exaggerating pretty much everything, so if that’s how she makes herself feel better, then fair enough. Not what I’d do, but we’re all different.

Did I learn anything? Not a thing once again, but it’s becoming rather interesting just sitting there watching people’s reactions to stuff. I like to sit and watch people, and this is interesting.

Next week it’s diet, I believe. So far I’ve not had any diet issues at all, as far as I can tell, so I’ve not read up a lot on it. I might well learn some stuff next week. And if not, I’ll just people-watch again.