Thursday, 31 January 2013

Week 21

In last weeks Blog I put up a link to the advert I did for Coloplast. When I say link, I mean the URL. For some reason, Blogger didn't convert it into a hyperlink. If you couldn't be bothered to copy and paste it into your address bar, fear not, as you didn't miss much. I don't even know why I posted it, to be honest. It has nothing to do with Gilenya. Maybe I was full of my own self-importance that day.

To continue my theme of self-importance, I am going to stick up a picture (X-ray) of my arm. I broke it in the summer when I fell over one evening - sober. It needed an operation. They put a plate in it, to hold the bone together. I spent almost a month in hospital and for the majority of that time, they didn't move me. When they eventually got the physio involved, I was in a right mess. I couldn't even stand up. In those 3 weeks, the muscles in my legs had withered away. I thought things were hard before the accident - I used a crutch to walk when I was outside the house, but now they were really difficult. I have managed to get some of the strength back, but it is taking a long time.

Since I came out of hospital, I've had a relapse. It was probably the trauma of the fall that triggered it. Unfortunately, the oral steroids only worked for as long as I was taking them. There seems to be a fair bit leftover too. Disease progression. I am using my wheelchair a fair bit when I'm out of the house now. Oh well, what can you do, eh? We just have to get on with it; to grin and bare it. Life could be so much worse. My children are both well, and happy and that's my priority.

Still, my fatigue is minimal, so I could be a whole lot worse. In fact after a busy day - by my standards, I am laying here on the bed finishing this blog off. The time is 01:50 AM and I am wide awake.

Another bit of crap news that I do have is that I fell over twice on Saturday. Well, when I say fell, it wasn't a loss of balance issue, but just a case of my legs giving up, waving the white flag and me slumping to the floor. Both times involved me getting out of/ or into the car. Transferring issues! That's a total of 5 falls in January.

For my Physio, I've got some leg strengthening exercises as a part of it and I've been doing them religiously all week. I also do core stability and shoulder exercises as well. I can't manage the whole lot everyday, as it is too tiring, and if I do too much, I suffer the next day, so at the moment, I'm concentrating on just the legs for a short while. Lets see how I fare with my walking this weekend.

Have a good one.


Thursday, 24 January 2013

Week 20

Going back to what I was saying last week about my minimal fatigue, there is one other thing I was going to tell you, but I forgot. Don't blame me, I've got MS.

I was taking Vitamin B12 tablets to help me manage my fatigue. They were helping a marginal amount. Not a massive amount, but for what they cost, it was worth taking them. Obviously, as my fatigue started improving, I decided to lay off them and see if I noticed any dip in my newly discovered alertness. I was nearing the end of the bottle anyway, so I decided to not get anymore for a while and see how I got on. I am happy to report that I have noticed no change with my fatigue at all. So all good news there then. And that's two less tablets I take each day as well. Good good.

I know that some GPs give out monthly vitamin B12 injections. I had told myself that I was going to ask my doctor about it the next time I was round there. Notice that was all in the past tense? I don't need to now. I still will though. Why not? For all I know, I might even be able to get out of bed before 9 o'clock in the morning without an alarm!! I'll let you know.

Before my legs gave up on me, I used to work in London. I had to be there at 7AM, so as I live about 50 miles to the east of the city in sunny Southend, it meant getting up a quarter to five - or quarter past after I'd hit the 'snooze' button umpteen times. Snoozing apart, I had no real problem getting up at this unearthly hour, but now, I would only get up that early if I had wet the bed! Fortunately, that is one symptom I don't have to endure, as I empty my bladder completely, thanks to the 'Speedicath Compact Male Catheter by Coloplast'I should get some fees for endorsing their product, don't you think? I did do an advert for them a year of two ago. If I remember, I'll put a link to it up at the bottom of the page.

I've been keeping a record of my falls recently - yeah I know, I've got too much time on my hands! Since the start of the year, I've only had 4 falls. Only, You're thinking, right? Well, coming from someone who was practically falling over every when I came out of hospital in July, I'm quite happy with that. You can even class one of them as not counting, as it was the Guinness that made me fall over.

I'm not putting this down to the Gilenya though. I've got a daily (mostly) exercise routine involving, core stability, leg strengthening and ones for my broken arm.


The link plays the video on my laptop, but not on my phone, by the way.

Friday, 18 January 2013

Week 19

Over the last month and a bit, I have noticed a considerable improvement in my fatigue. Now I know last week, I mentioned how my Amitriptyline reduction had helped me with my cognition, but that's not the same as fatigue.

Fatigue if you have MS, you will know only too well isn't just a case of being over tired. It's physical too. It's like the muscles in your body join your brain and go 'on strike' and any kind of movement becomes so much more laboured and tiring. That's a vicious circle for you.

Anyway forget all that. Fatigue - or lack of. I am convinced that the disappearance of said fatigue is because of the Gilenya. Gone are the days when I would fall asleep on the settee after lunch. Forget having to go and lay down on the bed in the afternoon for forty winks. I don't even have a single 'power nap' either. Who made that stupid saying up anyway?

I experienced the very same feeling a couple of months after I started taking Tysabri. As the two medications work in a similar way, I see no reason why the Gilenya shouldn't have the same positive effects.

At my recent clinic appointment, I asked my consultant her opinion. She told me that my fatigue situation could well be because of the Gilenya, but she couldn't confirm its relevance She couldn't give me any information about improvements because of the drug as apparently, I was the second (or 3rd) patient at the Royal London Hospital to go on the drug and (I think) they were the first hospital to start administering it since its re-issue. Ok, fair enough, but thanks for, erm, nothing.

That might sound a bit harsh; the data isn't there yet as it is such early days, but there were a good few years of trials, and don't forget it was licensed once before, but they had to withdraw it for safety issues. And it is administered globally. Think I'll have to do a bit of research myself on this world wide net.

If they are looking towards me for their data, there's at least one person whose fatigue is virtually non-existent because of Gilenya.


Saturday, 12 January 2013

Week 18

How are you all? I hope you're enjoying normality after Christmas and new year like I am.

There is something I want to tell you, and that is about my minimal neuropathic (nerve) pain.

At the beginning of last year, I decided that I wanted to try and cut down on the drug I was taking for the stinging sensation I was getting in my legs. I was taking 50 mg of Amitriptyline of an evening.

I read somewhere that the side effects to this type of medication was cognitive issues. I do suffer from 'cog fog' and my memory is (and always was) pretty bad. I decided that if I wanted to 'stop the rot' I would have to endure a bit of pain. I got myself down to a dose of 40mgs with ease. I didn't notice an increase in pain at all.

By the time I started on Gilenya, I had just started reducing down to 30 mgs with a bearable amount of nerve pain. Over the last few weeks, I've realised that my pain levels are pretty much non existent, so I'm going down to 20 at present.

Only a fool would credit the Gilenya with this because I was cutting back long before I started the new drug, but I found it surprisingly easy getting from 40 mg down to 30. I was in a bit of pain at first, but not too much. I seem to be getting down to 20 effortlessly too. But I can't help wondering if Gilenya has played a part in a subconscious way. I am feeling really positive about Gilenya and the changes I've noticed within my body and that must help. Or does that just make me a fool then?

Anyway, I feel a lot less cloudy within the confines of my tiny little mind now. I'm not condoning cutting down on your medication - well, I suppose I am, but I have an issue with the amount of pills I pop each day. Despite my Amitriptyline reduction, I still take 18 tablets (7 of which are vitamins) every day. Shake me and I rattle.

I was going to talk about Gilenya today, wasn't I? Next week I promise to. I'll tell you about my fatigue since I've been on the new medication.

Speak soon,

Friday, 4 January 2013

Week 17

Did you all enjoy new year? I did. I'll even go as far as to say, I well and truly put my recent bladder retaining improvements to the test. Oh yes.

I know quite a few people who have MS and it seems to be quite common that caffeine and alcohol aggravate your bladder. Cue New Year's Eve and plenty of alcohol. By the time I got to bed - half 4 - I had only used the toilet 3 times in 9 drink fuelled hours. I'm happy with that. I can't tell you how much urine I passed each time, but it was more than than my usual 700 mls.

When I first started to self-catheterise, my continence nurse asked if I could measure the volume of fluid that I pass. Therefore I can confirm that when I empty my bladder the jug told me I passed between 400-700 ml. One drunken night I managed to hang on to just over a litre of urine! Bearing in mind the average bladder holds five or six hundred millilitres of fluid, I informed my urology specialist nurse of my 1000 ml Guinness wee. She looked at me, shrugged her shoulders, and said, "So what, I drained 3 litres off an elderly prostrate cancer patient last week?" She insists that's the truth, but I think she was taking the piss.(pun intended)

She also told me that it is estimated thatt 70% of men in their 80s have prostate cancer, so us blokes have plenty of time on the toilet to look forward to. The reason that statistic is so high is that it is a slow developing illness and many men with prostate cancer never have symptoms; they undergo no therapy, and eventually die of other unrelated causes. Older men often die with prostate cancer, not because of it.

Next week, I'll talk about Gilenya.