Friday, 22 November 2013

Week 63

I've had a pretty good week compared to most of last week. My MS feels pretty stable. I've only had one fall since I last wrote, so Dan's a happy man. 

Having said that, my fatigue has been present for the last few days. Nowhere near the Pre-Gilenya levels, but it was there nevertheless. The reduction in fatigue is probably my greatest asset (that's not the right word, but you get me) I've gained since taking the medication. 

I didn't wake up this morning until gone 11 o'clock, which is a sign that something isn't quite right. I didn't go to bed late, it was about half past eleven, so a solid 12 hours sleep is a lot more than my body usually needs. I usually sleep right through the night without needing to get up and use the toilet too. 

I do believe that too much sleep is worse for my MS than not enough. If I don't have enough sleep, I spend the day feeling lethargic (kind of stating the obvious there) and I might need to have '40 winks' in the afternoon. But when I'm mobile, my body largely does what I want it to. Compare this to when I have too much sleep and when I get up in the morning, my legs are rigid, and the rest of my body is limp. My balance is non existent, so sitting on the edge of the bed can be troublesome. 

That's how I managed my fall recently. It wasn't a fall as such, but I ended up on the floor, so it counts. I was sitting on the edge of the bed and I couldn't bend my knees, so I just slid down onto the floor. It's like my body seizes up if it is motionless for longer than it should be. 

Unfortunately getting off the floor is far more troublesome than getting onto it!

Happy weekend. 


Friday, 15 November 2013

Week 62

When I did the blog last week, I was feeling pretty rubbish. No reason to it, it's just MS, isn't it? We put all of our ailments down to MS, don't we. I blame everything on MS. That nasty headache I had the morning after my recent Guinness binge. That was the MS. When I fell over that night, it wasn't anything to do with my intoxicated state either. You can even blame the third world debt on my demyelinated condition if you like, I do. 

I did seem to pick up slightly at the weekend, but I wasn't tip top. My walking hadn't been great and my balance was rubbish. I know, I know, I had been boozing a bit, but then my bladder became very unpredictable. I know for a fact that alcohol doesn't play a part in my newly found urgency to use the loo. It should do, and many MSers will confirm this, but with me it rarely does. Note to reader: I said 'rarely', not 'never'. 

Hang on a minute. Legs, balance and bladder? I've got a bloody urinary tract infection (UTI)! But how? I take a low dose antibiotics every day as a profilaxus   (I know I've spelt that wrong!).  What I'm trying to say is I take antibiotics as a precautionary measure. They do say prevention is better than a cure. The reason they give them to me daily is because I self catheterise every time I piss - sorry, pass urine. 

UTIs are fairly common if you self catheterise, but personal hygiene is an important factor. I have a 'gentleman's wash' every day and I wash my hands before I pi.. pi...pass urine. My plan isn't fool proof, but it puts your chances of getting bugs in your urethra at an absolute minimum 

As I have antibiotics here anyway, there is no need to take a sample to my Doctor, for them to tell me what I already know and give me something I already have here. I just cut out the middle (wo)man. A couple of days of an extra antibiotic and my bladder is tip top. *smiley face* A small glass of cranberry juice in the morning doesn't go a miss either. 

It's prophylaxis, by the way. 

Happy Friday,


Friday, 8 November 2013

Week 61

haven't mentioned my fatigue for a while. The reason being, I haven't had any. None at all. 

The dreaded dark cloud came back and bit me firmly on the bum yesterday. I've still got it today (Thursday). My whole body feels really weak. So much so, I fell over yesterday. I had a fair bit of difficulty getting back up again. I managed to though. I always do. Well I'd be writing this laying on the floor if I hadn't!

I'm having a day off my legs today. I think I'll use my wheelchair when I go to the 'battleship' (pub) with friends later. We're supposed to be going out for lunch, but I've eaten already, so I think I'll just hit the Guinness instead. Well, why not? It's good for you. It's got iron in it! It also helps you with the psychological battle against MS. When I probably fall over later, I will dismiss MS and put it down to alcohol *pulls smiley face*

I was talking about fatigue, but (as usual) I managed to distract myself, and go off in tangents, culminating in me banging on about my impending exploits with alcohol. 

Staying OFF topic, I am pleased to announce that a lot of alcoholic drinks don't have an adverse effect on my bladder. Fizzy beer does, and cider, but I can drink copious amounts of the 'black stuff' without the urge to wee all the time. The same goes for Jack Daniel's, red wine and believe it or not, vodka and Red Bull. Caffeine AND alcohol in the same glass. Seriously? Now that really doesn't make any sense. 

I'm not condoning alcohol, it should drank responsibly (yeah right), but having MS can cause problems when drinking. I know a few MSers that steer clear of it because of the urgency and regularity created by an alcohol induced irritable bladder. My bladder is over active anyway, although since I started self catheterising, I am now able to hold onto my bladder for a lot longer than when I didn't. 

Anyway, fatigue. I think an early night and a long lay in is required. MS is winning today, as it did yesterday. Tomorrow is another day. 

Stay well, people. 


Friday, 1 November 2013

Week 60

I didn't do a blog on Gilenya last week as I didn't have anything new, or of interest for you. I haven't got much more this week to be honest. I wouldn't blame you if you switched off right now. 

A few weeks ago, I renamed this blog. It's now called Pills, Thrills and NO bellyaches. This is referring to the complete lack of side effects I've had (not complaining) since I've been on this medication. See, I said you should've hit that red X in the top right hand corner of the device you're reading this borefest on. 

The last time I looked at my blog statistics, it had  9997 page views. That means that one of you reading this right now is the ten thousandth site visitor. I'm sorry, but there ain't not no prizes or nothing (how many negatives in that apology?) but you can rest assured knowing that I very much appreciate the thought that people do read this rubbish I spout most weeks. 

I hope that my documented side effect free year on Gilenya has helped to alleviate any concerns, fears even, about switching from a time consuming and possibly painful disease modifying treatment to the simple daily tablet. Gilenya does have side effects, but don't ask me, I don't know anything about them. 

Oh, I nearly forgot, I have had a side effect - regular bowels. Add that to the most minimal fatigue I've had in years and better bladder control, I can't see why anybody wouldn't want to stop regularly injecting themselves and pop a pill. 

Happy Friday.