That's how I feel.
My better half is wrapped up in bed with a stomach bug, and after a day of feeling a bit bloated I am wondering if I might have the same thing.
I hope not.
Last time I had a stomach bug - a bad one - I spent a night of hell as the MS, particularly the vertigo kicked in. Every movement I made spun the world around a Dave centred axis forcing me to retch as the seasickness took control.
Irony of ironies tonight I was meant to go to my first local MS Society social evening. I have been looking forward to it for ages as well.
But I feel just too bleurrggghhh!
Monday 30 March 2009
Wednesday 25 March 2009
Mr Pharmacist....
....won't you help me out today, in your usual lovely way
Popped into the chemists today to see if the "NO ALCOHOL" warning on my amitriptyline tablets, really means NO ALCOHOL.
A twinkly-glassed, tank-topped, phar-therly figure appeared from the back room as if by magic and assured me it was OK on the dosage I am on - I might get a bit of a headache in the morning, that was all.
Marvellous. I am not a big drinker by any stretch of the imagination, but I can now resume my tour of Eastern European lagers from the Eastern European beer section of my local supermarket.
"Hey mr pharmacist, I’ll recommend you to my friends, They’ll be happy in the end..."
(with apologies to The Fall)
Popped into the chemists today to see if the "NO ALCOHOL" warning on my amitriptyline tablets, really means NO ALCOHOL.
A twinkly-glassed, tank-topped, phar-therly figure appeared from the back room as if by magic and assured me it was OK on the dosage I am on - I might get a bit of a headache in the morning, that was all.
Marvellous. I am not a big drinker by any stretch of the imagination, but I can now resume my tour of Eastern European lagers from the Eastern European beer section of my local supermarket.
"Hey mr pharmacist, I’ll recommend you to my friends, They’ll be happy in the end..."
(with apologies to The Fall)
Monday 23 March 2009
I'm in pain...
It's not pain as you would conventionally know it and it's really difficult to describe the sensation. My feet and lower legs feel like they want to shrivel up and shrink into themselves with occasional stabs of more conventional pain from my toes. I used to describe it as a crawling sensation, but that doesn't do it justice, it is more like my calves and feet are sponges that
someone is gradually wringing out.
I have had this a while, probably a couple of years and the pain is there all the time. It normally causes what I would term chronic discomfort. In the last seven days, however, it has been flaring up regularly into toe-curling proportions. It will gradually get worse for a few hours later in the day. It can start at lunchtime or in the evening and progresses to become really debilitating. The only thing that provides relief is if I get up and walk around and I often imagine that my legs want to break away and run off by themselves. I guess it also gets worse the hotter or more fatigued I get.
Conventional painkillers - ibuprofen, paracetamol etc - are no good. I'm not keen on taking any new drugs after the experience I had with Gabapentin, so I'm going to see my GP in the morning if there is anything I can do or take for any relief.
This was written while screwing my face into contortions. Apologies if it's rubbish.
someone is gradually wringing out.
I have had this a while, probably a couple of years and the pain is there all the time. It normally causes what I would term chronic discomfort. In the last seven days, however, it has been flaring up regularly into toe-curling proportions. It will gradually get worse for a few hours later in the day. It can start at lunchtime or in the evening and progresses to become really debilitating. The only thing that provides relief is if I get up and walk around and I often imagine that my legs want to break away and run off by themselves. I guess it also gets worse the hotter or more fatigued I get.
Conventional painkillers - ibuprofen, paracetamol etc - are no good. I'm not keen on taking any new drugs after the experience I had with Gabapentin, so I'm going to see my GP in the morning if there is anything I can do or take for any relief.
This was written while screwing my face into contortions. Apologies if it's rubbish.
Thursday 19 March 2009
My MS History - Part Six
For the story so far...
After one more session of double-checking with Dr S where he had yet another student in tow - it seemed I was becoming a textbook example of nystagmus - it became apparent that the steroids really hadn't done their job. So to suppress my existing symptoms I was prescribed Gabapentin. As you can read elsewhere on this blog, gabapentin turned me into a zombie. Being a vegetarian and not at all into human flesh eating, I decided to ditch these drugs at Christmas 2008, for the good of my (and everyone else's) sanity.
Parallel to this, I had been given details of Disease Modifying Drugs (DMDs) prior to this meeting and using a slightly out-of-date MS Decisions website, made my choice which I was going to spend the foreseeable future taking...
... and then I made it again.
I had a choice of four DMDs, either Glatiramer Acetate (Copaxone) or one of the three Beta Interferon drugs - Rebif, Betaferon or Avonex. The choice was more of a case of elimination as none of the drugs stood out as being the obvious choice.
Copaxone was rejected because it was a daily injection and I didn't fancy the possibility of panic-attack style side-effects. It also hadn't got the clinical trial track record of the Beta Interferons.
Avonex was rejected because it was an intra-muscular injection and once a week. I wouldn't say that I was frightened of needles by any stretch of the imagination, but I didn't fancy dreading the one day every week where I would need to plunge a two inch needle into my leg muscle and then enduring any side effects over the weekend.
Betaferon was rejected because I felt that mixing the drugs every other day would become a bind. I downloaded videos off YouTube and these backed me up - too much of a faff.
So Rebif it was - sub-cutaneous injections three times a week but with the downer that it had to be kept in the fridge.
Eventually a large box with all the gubbins turned up with my monthly courier. By all the gubbins, I mean travel cool-bags (one large, one small), rebijector (injection pen), supporting literature, diary, "passports," sharps bin, injection site cushion (that I could heat or freeze), and the medication itself.
Two weeks at 8mg and two weeks at 22mg, and then I could expect a delivery of the 44mg syringes.
I have to say that I did get flu-like side-effects with Rebif, but it's a case of knowing when to take them. I noticed that it took a while before any nastiness kicked in, so if I remember, I take them relatively early in the evening and then sleep through the after-effects. I also take them on Sunday, Tuesday and Thursday to keep the morning-after hangover in the more-managable work environment and away from family quality time. The worst day of side effects happened when I had the mother of all hot flushes, stepping out to my car at 6am in just a summer dressing gown, thinking that it was quite mild, only for it to be minus seven when I checked my in-car thermometer later.
I found that the side-effects became less severe after about three or four months and if I get any side effects now, I don't notice them.
All-in-all, I have been quite lucky with Rebif. Nothing as bad as the horror stories I have read in online discussion forums. Of course, it's early days and it remains to be seen if the drugs do their job of slowing down the disease's progression.
2009 update >
After one more session of double-checking with Dr S where he had yet another student in tow - it seemed I was becoming a textbook example of nystagmus - it became apparent that the steroids really hadn't done their job. So to suppress my existing symptoms I was prescribed Gabapentin. As you can read elsewhere on this blog, gabapentin turned me into a zombie. Being a vegetarian and not at all into human flesh eating, I decided to ditch these drugs at Christmas 2008, for the good of my (and everyone else's) sanity.
Parallel to this, I had been given details of Disease Modifying Drugs (DMDs) prior to this meeting and using a slightly out-of-date MS Decisions website, made my choice which I was going to spend the foreseeable future taking...
... and then I made it again.
I had a choice of four DMDs, either Glatiramer Acetate (Copaxone) or one of the three Beta Interferon drugs - Rebif, Betaferon or Avonex. The choice was more of a case of elimination as none of the drugs stood out as being the obvious choice.
Copaxone was rejected because it was a daily injection and I didn't fancy the possibility of panic-attack style side-effects. It also hadn't got the clinical trial track record of the Beta Interferons.
Avonex was rejected because it was an intra-muscular injection and once a week. I wouldn't say that I was frightened of needles by any stretch of the imagination, but I didn't fancy dreading the one day every week where I would need to plunge a two inch needle into my leg muscle and then enduring any side effects over the weekend.
Betaferon was rejected because I felt that mixing the drugs every other day would become a bind. I downloaded videos off YouTube and these backed me up - too much of a faff.
So Rebif it was - sub-cutaneous injections three times a week but with the downer that it had to be kept in the fridge.
Eventually a large box with all the gubbins turned up with my monthly courier. By all the gubbins, I mean travel cool-bags (one large, one small), rebijector (injection pen), supporting literature, diary, "passports," sharps bin, injection site cushion (that I could heat or freeze), and the medication itself.
Two weeks at 8mg and two weeks at 22mg, and then I could expect a delivery of the 44mg syringes.
I have to say that I did get flu-like side-effects with Rebif, but it's a case of knowing when to take them. I noticed that it took a while before any nastiness kicked in, so if I remember, I take them relatively early in the evening and then sleep through the after-effects. I also take them on Sunday, Tuesday and Thursday to keep the morning-after hangover in the more-managable work environment and away from family quality time. The worst day of side effects happened when I had the mother of all hot flushes, stepping out to my car at 6am in just a summer dressing gown, thinking that it was quite mild, only for it to be minus seven when I checked my in-car thermometer later.
I found that the side-effects became less severe after about three or four months and if I get any side effects now, I don't notice them.
All-in-all, I have been quite lucky with Rebif. Nothing as bad as the horror stories I have read in online discussion forums. Of course, it's early days and it remains to be seen if the drugs do their job of slowing down the disease's progression.
2009 update >
Thursday 12 March 2009
DeViL'sArse
I'm not in the habit of complaining, and I don't want to be the sort of person who does, but the Driver and Vehicle Licensing Agency (DVLA) have seen fit to part me from my driving license.
Apparently multiple sclerosis falls into a category of degenerative medical conditions whereby I can only be issued with a short-term (three year) license. When this runs out I will be sent a "computer generated form" and asked to re-apply. I only hope it doesn't result in the hopeless correspondence I have experienced with the DVLA so far, which has involved all sorts of irrelevant questioning on their part and needless reiteration on mine.
The definition of discrimination includes "Treatment or consideration based on class or category rather than individual merit" (source: Wiktionary), which is surely what this is, because apart from the DVLA's decision, I am legally obliged (along with the rest of the population) to inform them of any deterioration in my health anyway.
I have sent my license off to Swansea, before they officially revoke it. I can appeal if I want, but if I did it would be on behalf of people in the UK with MS rather than on my own individual circumstance. I have checked out the Disability Discrimination Act (the legal eagle that I am!) and there appears to be a clause whereby this sort of thing is allowed if an Act of Parliament requires it, so it's set in law. In this case, I think the law is the DeViL'sA**e
Apparently multiple sclerosis falls into a category of degenerative medical conditions whereby I can only be issued with a short-term (three year) license. When this runs out I will be sent a "computer generated form" and asked to re-apply. I only hope it doesn't result in the hopeless correspondence I have experienced with the DVLA so far, which has involved all sorts of irrelevant questioning on their part and needless reiteration on mine.
The definition of discrimination includes "Treatment or consideration based on class or category rather than individual merit" (source: Wiktionary), which is surely what this is, because apart from the DVLA's decision, I am legally obliged (along with the rest of the population) to inform them of any deterioration in my health anyway.
I have sent my license off to Swansea, before they officially revoke it. I can appeal if I want, but if I did it would be on behalf of people in the UK with MS rather than on my own individual circumstance. I have checked out the Disability Discrimination Act (the legal eagle that I am!) and there appears to be a clause whereby this sort of thing is allowed if an Act of Parliament requires it, so it's set in law. In this case, I think the law is the DeViL'sA**e
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