Responding to comments on my most recent posts has reminded me that I should really blog something, seeing as my sick-note expires today and I go back to work tomorrow.
Btw those comments were from Jackie at MSunderstood whose blog kicks a sizeable amount of ass - you have been told.
I'm really dreading it in a "end-of-the-summer-holidays" kind-of way - my dad has brought up my brother and I to regard work as a necessary evil, something which interrupts your leisure time. However, I had a good conversation with my boss the other day; his main concern is that I shouldn't come back to work too soon, and when I do return it should be a staggered return - so my plan is to go in tomorrow, get my face around, check messages and after a couple of hours bring some work home with me.
I might sound like a total slacker (and if the cap fits...) but from the last couple of weeks I know only too well that if I try to do too much it totally spanks me. And my family really don't need to go through another relapse before the end of the year, thank you very much.
Other news? I had another session of Reiki - obviously it's not going to cure my MS but at the very least it's really meditative - it's really cool to have a chance to just sit and do nothing but breathe for an hour or so. Going again this weekend so she should be able to rid me of any work stress that I might get over the next two days!
I picked up some new tablets which were recently suggested by the MS nurse - Modafinil for fatigue (this is a tablet which was created to help people with Narcolepsy, for gawd's sake!) and Diazepam for my nightly restless-legs. Guess what? Loads of possible side-effects so I haven't taken any yet. It's amazing what a fear I've developed of medical science...
So tomorrow is the return to work. Wish me luck!
Wednesday, 14 October 2009
Wednesday, 7 October 2009
reiki
I feel like I should probably have gone into my experience of Reiki a bit more. So here goes!
The lady who "did me" was a friend of my parents. My dad had a golfing injury a few years back and after necking painkillers and putting on hot and cold compresses, he thought he'd give Reiki a go. Now, my dad is a cynical old bugger. He went along to be polite and felt utterly stupid as this woman he knew waved her hands over his wrist. When he woke up the next day feeling absolutely fine, he had to call her to apologise.
So I decided to go along, not in the hope that she would cure my MS completely (although it would be nice) but that she might relieve my shoulder pain and help me get some sleep.
Luckily, I'd never met Trish before so there was no awkwardness for me but I did still keep my eyes shut throughout. And similar to when I had a massage earlier this year (and FULL DISCLOSURE a facial - I'm not ashamed), I really had to concentrate on my expression and trying not to laugh. I was surprised by how hands-on the treatment was - I was expecting Trish to wave her hands over my body.
As I mentioned last time, she picked up on my shoulder pain without any prompting, as well as picking up on wear and tear on my right knee (makes sense when you think that a couple of weeks ago I was unable to move my left leg so would have been putting a fair bit of pressure on the other one).
Trish said that some people experienced changes in temperature during a session, and this was certainly true for me. My left leg in particular went icy cold when she was working on it.
The only downside to the whole session was due to the fact that it took place in Trish's house. Her husband is a smoker so I found the faint whiff of cigarette smoke increasingly distracting (I'm an ex-smoker so am now really intolerant of them).
I'm going to see her again in a couple of days. I may take my own towel round to lie on. But how rude would that look?! Hopefully my folks will have had a word with her by then.
The lady who "did me" was a friend of my parents. My dad had a golfing injury a few years back and after necking painkillers and putting on hot and cold compresses, he thought he'd give Reiki a go. Now, my dad is a cynical old bugger. He went along to be polite and felt utterly stupid as this woman he knew waved her hands over his wrist. When he woke up the next day feeling absolutely fine, he had to call her to apologise.
So I decided to go along, not in the hope that she would cure my MS completely (although it would be nice) but that she might relieve my shoulder pain and help me get some sleep.
Luckily, I'd never met Trish before so there was no awkwardness for me but I did still keep my eyes shut throughout. And similar to when I had a massage earlier this year (and FULL DISCLOSURE a facial - I'm not ashamed), I really had to concentrate on my expression and trying not to laugh. I was surprised by how hands-on the treatment was - I was expecting Trish to wave her hands over my body.
As I mentioned last time, she picked up on my shoulder pain without any prompting, as well as picking up on wear and tear on my right knee (makes sense when you think that a couple of weeks ago I was unable to move my left leg so would have been putting a fair bit of pressure on the other one).
Trish said that some people experienced changes in temperature during a session, and this was certainly true for me. My left leg in particular went icy cold when she was working on it.
The only downside to the whole session was due to the fact that it took place in Trish's house. Her husband is a smoker so I found the faint whiff of cigarette smoke increasingly distracting (I'm an ex-smoker so am now really intolerant of them).
I'm going to see her again in a couple of days. I may take my own towel round to lie on. But how rude would that look?! Hopefully my folks will have had a word with her by then.
Monday, 5 October 2009
aprés le deluge
Well it's been the best part of fortnight since I last wrote. I seemed to have more side-effects from the steroids this time. WARNING! These side effects are all really minor and pathetic - the fact that I can now wash and dress myself easily outweigh all of these! Plus I've been playing guitar for the first time in ages - might not sound like much but it means a lot.
The type of steroid I was on is called Methylprednisolone. According to Wiki, prolonged usage of this can lead to psychosis and there WERE some dramatic mood swings last week, plus some dark thoughts brought on by insomnia. But hey, it wasn't exactly 4.48 Psychosis and I'm still here.
The steroids really messed with my sleep, to be honest - it took me about a week after the last dose to get a good night's kip - and I had some weird sensory disruptions - mostly a burning feeling on the skin around my neck, like I'd removed a scarf too quickly. No biggies, though.
This particular relapse affected the whole of my left side, and dragging my leg and arm around with me gave me chronic back pain - obviously, the steroids' anti-inflammatory effect calmed that down but as they wore off it popped up again.
So last week, I had a session of Reiki. Yeah, I know, that's what I thought, but the MS Nurse didn't entirely pooh-pooh the idea and my Dad has had some success with it so we thought, why not? Spookily, the lady who "did me" picked up on the pain in my left shoulder without any pointers from me... Going again this week as it did seem to help.
Friday, 25 September 2009
steroids 2.3 PLUS a quick question
Last day of steroids yesterday. Had to wait a wee bit to get plugged in and ended up sat next to a poor lad who'd had THREE MRI scans - to be perfectly honest, one was enough for me.
The doctors had told him that they'd found 'something' on his scans but he hadn't been told yet. Not great. He was 'self-medicating'; he said that he was an alcoholic as it was the only he could control the pain in his skull.
Eventually the question came that I'd been dreading (we'd already covered my minimal football knowledge): "So. What are you in for?"
"Well, I've got Multiple Sclerosis and this is the third day of steroid treatment to get me over a relapse", I said.
"Oh God. I'm sorry mate. How long do you think you've got?"
Thanks for that, Debbie Purdy!
Steroid playlist, Day 3
How many times is it acceptable for me to be contacted by my employer when I'm signed off work? Had a phonecall and one email yesterday, two emails today, all of which could have been either (a) ignored or (b) dealt with by somebody else. What do you think?
The doctors had told him that they'd found 'something' on his scans but he hadn't been told yet. Not great. He was 'self-medicating'; he said that he was an alcoholic as it was the only he could control the pain in his skull.
Eventually the question came that I'd been dreading (we'd already covered my minimal football knowledge): "So. What are you in for?"
"Well, I've got Multiple Sclerosis and this is the third day of steroid treatment to get me over a relapse", I said.
"Oh God. I'm sorry mate. How long do you think you've got?"
Thanks for that, Debbie Purdy!
Steroid playlist, Day 3
They Might Be Giants - Turn AroundQuick question
Guided By Voices - Glad Girls
Silver Jews - Tennessee
The Bad Plus - Tom Sawyer
Frank Zappa - Peaches En Regalia
Vampire Weekend - Mansard Roof
School of Language - Rockist
The Coconut Monkeyrocket - Periwinkle Pussycat
David Bowie - Sound and Vision
Deerhoof - Rrrrrrright
Deerhoof - The Perfect Me
The Beta Band - Dry The Rain
Belle And Sebastian - Another Sunny Day
How many times is it acceptable for me to be contacted by my employer when I'm signed off work? Had a phonecall and one email yesterday, two emails today, all of which could have been either (a) ignored or (b) dealt with by somebody else. What do you think?
Wednesday, 23 September 2009
steroids 2.2
Monday was one of those long days that you sometimes have to spend in hospitals, hanging about. Now, I love the NHS - I think it's one of the few truly great things that we have in this country - but there are problems. Mostly that there's frequently not enough staff, and those that ARE in are totally knackered, chronically overworked and, let's face it, underpaid. The idea that free, quality health care is a basic human right is a beautiful thing. Let's not feck if up.
Anyway, we had a really good chat with the MS nurse, which covered everything from Physio, Disease Modifying Treatments, accupuncture, oxygen tents and Hopi ear candles. It was a good chat but she didn't think steroids would be adviseable or effective, so soon after my last treatment.
Neither did the doctor who did my steroid assesment. Until he checked my strength, that is, when he just said that, actually, it might be a good idea.
This is when the NHS trouble started. I didn't get to see the doctor until 2 hours after my scheduled appointment. By that time, there was only one nurse left, and she was concerned that, if I started my first steroid drip, there'd be no-one around to "unplug" me after it'd finished (I've got to say both the doctor and this nurse looked absolutely knackered).
So, we started the steroid treatments the following day - hello catheter in my wrist, annoying hiccups, manky metallic taste in my mouth and one mostly sleepless night. But I am getting more control over my leg, more sensation in my hands and generally feeling pretty good so far.
Here's the list of tunes I listened to whilst having drugs pumped into my arm today!
As my MS has been pretty benign so far, I've always been told to put it off taking DMDT's as long as possible. Apparently they're trying to start people on earlier these days, pretty much at diagnosis. I'll keep you posted!
Monday was one of those long days that you sometimes have to spend in hospitals, hanging about. Now, I love the NHS - I think it's one of the few truly great things that we have in this country - but there are problems. Mostly that there's frequently not enough staff, and those that ARE in are totally knackered, chronically overworked and, let's face it, underpaid. The idea that free, quality health care is a basic human right is a beautiful thing. Let's not feck if up.
Anyway, we had a really good chat with the MS nurse, which covered everything from Physio, Disease Modifying Treatments, accupuncture, oxygen tents and Hopi ear candles. It was a good chat but she didn't think steroids would be adviseable or effective, so soon after my last treatment.
Neither did the doctor who did my steroid assesment. Until he checked my strength, that is, when he just said that, actually, it might be a good idea.
This is when the NHS trouble started. I didn't get to see the doctor until 2 hours after my scheduled appointment. By that time, there was only one nurse left, and she was concerned that, if I started my first steroid drip, there'd be no-one around to "unplug" me after it'd finished (I've got to say both the doctor and this nurse looked absolutely knackered).
So, we started the steroid treatments the following day - hello catheter in my wrist, annoying hiccups, manky metallic taste in my mouth and one mostly sleepless night. But I am getting more control over my leg, more sensation in my hands and generally feeling pretty good so far.
Here's the list of tunes I listened to whilst having drugs pumped into my arm today!
Tortoise - 'Gamera'The nurse we saw on Monday saw me today and said that I'll be getting an appointment with a physio soon, plus I'll be seeing someone about some disease modifying drug treatments.
Yo! MAJESTY - 'Club Action'
Weezer - 'Pork And Beans'
Beck - 'Timebomb'
The World Record - 'We're #1'
The World Record - 'Serious'
The Cool Kids w/ Don Cannon - 'Hammer Bros.'
Wilco - 'Deeper Down'
Tom Waits - 'Buzz Fledderjohn'
As my MS has been pretty benign so far, I've always been told to put it off taking DMDT's as long as possible. Apparently they're trying to start people on earlier these days, pretty much at diagnosis. I'll keep you posted!
Wednesday, 16 September 2009
breaking news
Good news:
FINALLY made contact with some occupational therapists that I'd found on a website. One of them actually pointed me in the direction of my local PCT (Primary Care Trust), which was very cool. Especially considering the fact that the PCT will be free.
I've had a couple of chats with them and they've had some experience of working with people with MS. I've asked my GP to refer me to them, so we'll have to see what happens next. Hopefully they'll see me at work AND at home. I'll keep you posted.
BAD NEWS:
I had a check-up with the MS Nurses at the QMC a couple of weeks ago. They were really pleased with my progress - apparently most people that have relapses like the one I had in May can take up to 9 months to recover; at that point I felt 60-75% better.
Well, the next few weeks were spent doing the marketing for Derby Festé, a 3-day arts festival which took place between 4 and 6 September. Pretty hard work, and I had to spend quite a bit of time at the events that weekend. The Thursday after, my leg started dragging, fatigue set in, and now the whole of my left-side (arm and leg) is like a gigantic side of beef that I'm carrying around with me.
You find me on day 5 of what almost certainly appears to be a full-on relapse. Or at the very least, Relapse '09 Part Two.
Because of a theory that one of the MS Nurses came up with, for a surreal couple of days we actually found ourselves praying for a urinary infection; the logic ran that my dose of Swine Flu might have extended my relapse from May, and made me easy prey for anything going around. But I got the results back today and they came back negative.
I'm going to see the Nurses for an assesment on Monday, maybe for another round of steroids, maybe to talk about starting a course of disease-modifying drugs and daily injections.
Also, I guess there's a chance that my condition could be up/down-graded to secondary progressive. But we'll cross that bridge as-and-when.
AND FINALLY:
It really IS a shit business.
Sent from Steve's iPod
FINALLY made contact with some occupational therapists that I'd found on a website. One of them actually pointed me in the direction of my local PCT (Primary Care Trust), which was very cool. Especially considering the fact that the PCT will be free.
I've had a couple of chats with them and they've had some experience of working with people with MS. I've asked my GP to refer me to them, so we'll have to see what happens next. Hopefully they'll see me at work AND at home. I'll keep you posted.
BAD NEWS:
I had a check-up with the MS Nurses at the QMC a couple of weeks ago. They were really pleased with my progress - apparently most people that have relapses like the one I had in May can take up to 9 months to recover; at that point I felt 60-75% better.
Well, the next few weeks were spent doing the marketing for Derby Festé, a 3-day arts festival which took place between 4 and 6 September. Pretty hard work, and I had to spend quite a bit of time at the events that weekend. The Thursday after, my leg started dragging, fatigue set in, and now the whole of my left-side (arm and leg) is like a gigantic side of beef that I'm carrying around with me.
You find me on day 5 of what almost certainly appears to be a full-on relapse. Or at the very least, Relapse '09 Part Two.
Because of a theory that one of the MS Nurses came up with, for a surreal couple of days we actually found ourselves praying for a urinary infection; the logic ran that my dose of Swine Flu might have extended my relapse from May, and made me easy prey for anything going around. But I got the results back today and they came back negative.
I'm going to see the Nurses for an assesment on Monday, maybe for another round of steroids, maybe to talk about starting a course of disease-modifying drugs and daily injections.
Also, I guess there's a chance that my condition could be up/down-graded to secondary progressive. But we'll cross that bridge as-and-when.
AND FINALLY:
It really IS a shit business.
Sent from Steve's iPod
Friday, 11 September 2009
bad blogging
Yeah, yeah, yeah... Frankly appalled at how long it has been since I wrote anything here. I will try to write this weekend as there's lots of stuff cracking off - some good, some not so good.
In other interwebhighway news, I had a "cease and desist" from Blogger for my other blog, Domino Rally. This was the MP3 blog I set up for the members of my old band Johnny Domino so we could share songs and personal favourites with the world (well, our mates, really). It was always done in a very respectful way, with links to artists and to shops for people to buy stuff, and we NEVER posted full albums, no matter how obscure it was.
I never kidded myself about the (il)legality of what we were doing and always told myself I'd knock it on the head if I ever got a C&D note. But I had a minor freak out and deleted the whole thing (NB I'm renowned for my overreactions).
For the last couple of years, it's just been me posting there, and I kind of miss that side of things, so forgive me if some avant-garde jazz or some alt.country begins to appear here - it's just a desire to share.
In other interwebhighway news, I had a "cease and desist" from Blogger for my other blog, Domino Rally. This was the MP3 blog I set up for the members of my old band Johnny Domino so we could share songs and personal favourites with the world (well, our mates, really). It was always done in a very respectful way, with links to artists and to shops for people to buy stuff, and we NEVER posted full albums, no matter how obscure it was.
I never kidded myself about the (il)legality of what we were doing and always told myself I'd knock it on the head if I ever got a C&D note. But I had a minor freak out and deleted the whole thing (NB I'm renowned for my overreactions).
For the last couple of years, it's just been me posting there, and I kind of miss that side of things, so forgive me if some avant-garde jazz or some alt.country begins to appear here - it's just a desire to share.
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