So we went to see the specialists last week. Following my two relapses this year, I now qualify to go on one of the Disease Modifying Therapies. There are four different types, all injections that tend to reduce the number of relapses by about a third.
If you're reading this blog, you probably know just as much about these as I do! If not, have a good look through the MSDecisions website for some proper information.
At the end of the day, the Neurologist and MS nurse recommended Rebif. They demonstrated a couple of auto-injectors (including one called Rebi smart, which looks kind of like a chunkier iPod that tracks your injections and dosage, which would be handy. Thinking about it, a chunkier iPod is a Zune, isn't it?).
So all in all, this sounds pretty cool...
Except for the fact that all of these drugs advise you not to try for a baby when you're taking them. They're all very explicit about the fact that WOMEN shouldn't try to get pregnant. They're somewhat less explicit about the effect that they may or not have on my... "little swimmers" (ahem).
Emma and I are in our mid-30s, we've been together for 6 years, married for 3, so this is something we're naturally thinking about.
So we're now having to gamble on my health. I either stay off the drugs and get on with what the nurse called "making them babbys". Or I start the injections for 6 months to a year, then come off them for 6 months, THEN we start trying for a baby.
And like I said, we're in our mid 30s; not a massive issue for me, but definitely one for Emma. But having said that, the longer we leave it, the more chance there is that I will be... shall we say, "less active" than I would hope.
God, I wish we didn't have to think about these things!
Tuesday, 24 November 2009
Thursday, 19 November 2009
the crudlines
Just a quick post to fill you in on the headlines of the last week or so - tomorrow we go to discuss Disease Modifying Therapies.
Brave New World, here we come!
Brave New World, here we come!
- Still on the 'half-a-tab-a-day' of Modafinil. I do feel a little bit sharper, especially at work, but I still need to have a nap after coming home. Have toyed with the idea of increasing the dosage slightly but I'm waiting until I speak to one of the professionals.
- I've been getting taxis to work, to be paid for by Access to Work. This didn't start off too auspiciously - the first driver BROKE WIND the second I got into his car. This hasn't happened since.
- The OT visited me at work with a guy from Shape Seating. Together they've submitted a report with some recommendations for my workspace - and they've also approached Access to Work to get a grant for the adjustments. It's all looking pretty positive, so hopefully I'll be able to tell you about my spanky new space-chair - fingers crossed.
- I got my Disabled Parking Badge last week.
Bit of a mixed blessing, this one - it will undoubtedly be very helpful for me and enable me to get to work-meetings and park in more convenient spaces. I will, however, have to put the damned thing in my car, which is what I'm having a problem with at the mo'. It's just the idea that I need one is jarring with me a little bit - but I'll get over it.
Friday, 6 November 2009
i love the sound of a jukebox playin'
[the title to this post doesn't mean anything, it was just the first line of the song i was listening to at the time]
Halloween weekend was spent at my sister-in-law's in Leeds. We had a great time - the drive was a bit of a test for me and my non-existent stamina but we managed fine. The scariest part of the whole weekend (it being Halloween and all) was my constant need to know where the nearest toilet was - oh my wacky central nervous system and the Ker-azy messages you like to send out! I will bring that up again when I see the MS Team later this month to discuss DMT's (that's Disease Modifying Therapies, kids - who doesn't love a wacky acronym?).
Other than that, I've been continuing to dip my toe back into the world of work - 4 to 5 hours a day seems to be enough for me, and my employer is very keen for me to take my time getting back to full-time employment.
Due to this and the imminent, perfectly-understandable-but-temporary drop in my wages, I got back in touch with Access To Work and had THE STRANGEST conversation with the adviser I've been dealing with.
If you remember, I'd had a bit of a run-in about the amount of support they were offering to me - but now, due to the fact I'll soon be on half-wages, the idea of getting paid-for taxis to work makes more sense than paying for petrol and parking out of my own pocket.
When I got through to the adviser he said something along the lines of, "Well, we didn't end the conversation very well when we last spoke did we? To be honest Steve, I thought that you were taking out on me personally when I'm trying to help you out as best I can. It wasn't very good, was it?"
Now, I have a relatively short fuse (and a shit memory - I wish I could've recorded both conversations!). But this phonecall took place while I was at work - I share an office with my boss who ASSURES me that I didn't lose my temper; if anything, I just ended the conversation a bit quickly but that's all.
I thought it was bit odd that I'd not received my claim forms!
Here's a message to the trainers of the Access to Work advisers:
It's not big and it's not clever and no-one should stand for getting bawled-out when they're at work. But someone needs tell your advisers that the people who are calling in for their assistance will have taken a while to get the courage to make the call in the first place. They'll probably have been sent from pillar to post by various health organisations looking for some straight answers to some pretty big questions.
Guess what? When they get through to you, they may be getting to the end of their tether. If you think YOU'RE having a hard day, come round my house when my wife's sobbing. Or maybe when I'm getting such confusing messages from my body that I think I'm going to crap myself as soon as I leave the house.
In short: suck it up. Or learn to empathise.
[I know - the same could be said to me but still...]
Earlier today, I took my first Modafinil anti-fatigue tablet - they've been sat on the shelf for a few weeks now. I checked out a post on the excellent Shift.MS website, where one of the members was talking about how they find that taking half-a-tablet a day does the trick for them. The dose I've been told to have is two tablets a day, so after checking with the MS Nurse, I took a half.
No side-effects yet - I did feel a bit speedy but I seem mentally a wee bit sharper (not hard judging by my recent cog-fog) - I'm watching this shit like a hawk (understandably this time) so I'll bore you about this some more later.
Halloween weekend was spent at my sister-in-law's in Leeds. We had a great time - the drive was a bit of a test for me and my non-existent stamina but we managed fine. The scariest part of the whole weekend (it being Halloween and all) was my constant need to know where the nearest toilet was - oh my wacky central nervous system and the Ker-azy messages you like to send out! I will bring that up again when I see the MS Team later this month to discuss DMT's (that's Disease Modifying Therapies, kids - who doesn't love a wacky acronym?).
Other than that, I've been continuing to dip my toe back into the world of work - 4 to 5 hours a day seems to be enough for me, and my employer is very keen for me to take my time getting back to full-time employment.
Due to this and the imminent, perfectly-understandable-but-temporary drop in my wages, I got back in touch with Access To Work and had THE STRANGEST conversation with the adviser I've been dealing with.
If you remember, I'd had a bit of a run-in about the amount of support they were offering to me - but now, due to the fact I'll soon be on half-wages, the idea of getting paid-for taxis to work makes more sense than paying for petrol and parking out of my own pocket.
When I got through to the adviser he said something along the lines of, "Well, we didn't end the conversation very well when we last spoke did we? To be honest Steve, I thought that you were taking out on me personally when I'm trying to help you out as best I can. It wasn't very good, was it?"
Now, I have a relatively short fuse (and a shit memory - I wish I could've recorded both conversations!). But this phonecall took place while I was at work - I share an office with my boss who ASSURES me that I didn't lose my temper; if anything, I just ended the conversation a bit quickly but that's all.
I thought it was bit odd that I'd not received my claim forms!
Here's a message to the trainers of the Access to Work advisers:
It's not big and it's not clever and no-one should stand for getting bawled-out when they're at work. But someone needs tell your advisers that the people who are calling in for their assistance will have taken a while to get the courage to make the call in the first place. They'll probably have been sent from pillar to post by various health organisations looking for some straight answers to some pretty big questions.
Guess what? When they get through to you, they may be getting to the end of their tether. If you think YOU'RE having a hard day, come round my house when my wife's sobbing. Or maybe when I'm getting such confusing messages from my body that I think I'm going to crap myself as soon as I leave the house.
In short: suck it up. Or learn to empathise.
[I know - the same could be said to me but still...]
Earlier today, I took my first Modafinil anti-fatigue tablet - they've been sat on the shelf for a few weeks now. I checked out a post on the excellent Shift.MS website, where one of the members was talking about how they find that taking half-a-tablet a day does the trick for them. The dose I've been told to have is two tablets a day, so after checking with the MS Nurse, I took a half.
No side-effects yet - I did feel a bit speedy but I seem mentally a wee bit sharper (not hard judging by my recent cog-fog) - I'm watching this shit like a hawk (understandably this time) so I'll bore you about this some more later.
Tuesday, 27 October 2009
swings & roundabouts
Apologies for the venting yesterday - I think we all get like that some days.
Today I had a visit from an Occupational Therapist based at Derby Primary Care Trust. She came into where I work and had a look at my workstation and the general environment. She's writing up a report for my employees with some recommendations which would make life a bit easier.
Best of all, she's going to contact Access to Work (see yesterday's ugly post) to say, "These are the changes which I recommend, are you going to help pay for them?"
Sometimes things go well and there are some good people out there.
Today I had a visit from an Occupational Therapist based at Derby Primary Care Trust. She came into where I work and had a look at my workstation and the general environment. She's writing up a report for my employees with some recommendations which would make life a bit easier.
Best of all, she's going to contact Access to Work (see yesterday's ugly post) to say, "These are the changes which I recommend, are you going to help pay for them?"
Sometimes things go well and there are some good people out there.
Monday, 26 October 2009
the dark side
Hey Steve - why so glum?
First things first, returning to work was absolutely fine. Everyone there has been really understanding and sensitive. I've been doing four hours a-day which has really been enough for me, to be honest.
On the second day there, I resubmitted my application for some assistance through the Job Centre's Access to Work scheme. A few days after that I received a letter from them which said that my application was 'eligible for consideration'. Which I took to be a 50% 'yes'.
After two four-hour shifts it was the weekend, which included the last of my booked Reiki sessions. I'm still really conflicted about this whole thing. As I've said previously at the very least it's a really mellow and relaxing experience. But Trish kind of lost me when she said that if I started to feel tense, I could just call her up and she would 'send some Reiki' to me. Now, don't get me wrong - Trish is a very nice lady, and I know that SHE believes in the worth of what she does, but when she said that my cynical side had to cry 'bullshit'. I don't think I'll be returning for more, which is a shame.
The following day, on the advice of a health professional, I submitted an application for Disability Living Allowance. I don't know how many of you have done this but it's single-handedly the most DEPRESSING thing I've ever done.
My MS is of the relapsing and remitting variety so I had to answer all the questions as though it was the very worst of all possible days - all the symptoms, all the mobility issues, all the assistance which I could possibly need from my family, etc. I know that we're all aware of our own personal experiences with this bloody horrible condition but to get it all written down... not exactly how any of us imagined our lives working out, I'm sure.
On Monday's where I work, we always have a meeting of the Senior Management Team on a Monday afternoon. As such I had the morning to myself so I thought I'd spend a bit of time on the Wii-Fit (which I've mentioned before).
Well, I totally overdid it. My body and what little muscle and conditioning I've had has totally turned to shit - couldn't do many of the exercises, although ironically my balance wasn't totally shonky. Plus when I got to work in the afternoon, I ended up staying too late.
Since then I've been getting better about managing my time and the rest of the week passed pretty much without incident. I spoke to one of the nurses who said that the effect of fatigue on people with MS is kind of like a cell-phone battery gauge, and getting ready for work (showering, shaving, getting dressed, driving in, parking) effectively takes up half of your energy store.
I know this is nothing out of the ordinary for people with MS but for fucks sake, I'm 36 not 63.
I shouldn't be in a wheelchair getting pushed around the hospital by my 62 year-old father. I shouldn't need support from my amazing wife getting in and out of the shower. Also, I shouldn't have to be so completely reliant on her. Here's a small but relevant case-in-point: I will never again go to the counter in a cafe to buy her a drink because I can no longer carry the tray. Plus my legs will probably be playing up by this point so she'll insist that I have a seat. I know she'd say that she doesn't mind but I fucking mind!
The fact that I'm a drain on her energy and time is something that I think about constantly. Plus the real kicker, the one thought that breaks my heart: I'll never play football with my nephews or children.
Hey Camel, could you manage just one more straw?
*crack!*
Whoops...
Today I heard back from Access to Work - I'm currently driving in and paying to park close by to where I work - but to claim back the petrol from ATW would work out at 25 pence a day. And they don't pay for parking because everyone has to pay for that.
The problem with my application is apparently that I still have a driving license and am still able to drive, following my disclosure to the DVLA.
ATW have said that they'll give me £6 a day for taxis to and from work. Which I would have to pay for and claim back. Plus they'll only do this for 3 months - because they want to know what the outcome of my DLA application might be.
Sorry for all this whinging - today has been a real pain in the arse.
On top of all of the above, since I've been back at work I've been feeling really out of the loop and not exactly 'up to snuff'.
I used to be so good at my job and I used to be really conscientious. Now I can't keep things in my head, I can't multi-task, I feel like a total flake. I'm starting to feel that some of my colleagues are thinking these things too - but I know if I tried to push myself to 'prove them wrong'. it would not exactly be beneficial to my health.
What a load of old crap.
First things first, returning to work was absolutely fine. Everyone there has been really understanding and sensitive. I've been doing four hours a-day which has really been enough for me, to be honest.
On the second day there, I resubmitted my application for some assistance through the Job Centre's Access to Work scheme. A few days after that I received a letter from them which said that my application was 'eligible for consideration'. Which I took to be a 50% 'yes'.
After two four-hour shifts it was the weekend, which included the last of my booked Reiki sessions. I'm still really conflicted about this whole thing. As I've said previously at the very least it's a really mellow and relaxing experience. But Trish kind of lost me when she said that if I started to feel tense, I could just call her up and she would 'send some Reiki' to me. Now, don't get me wrong - Trish is a very nice lady, and I know that SHE believes in the worth of what she does, but when she said that my cynical side had to cry 'bullshit'. I don't think I'll be returning for more, which is a shame.
The following day, on the advice of a health professional, I submitted an application for Disability Living Allowance. I don't know how many of you have done this but it's single-handedly the most DEPRESSING thing I've ever done.
My MS is of the relapsing and remitting variety so I had to answer all the questions as though it was the very worst of all possible days - all the symptoms, all the mobility issues, all the assistance which I could possibly need from my family, etc. I know that we're all aware of our own personal experiences with this bloody horrible condition but to get it all written down... not exactly how any of us imagined our lives working out, I'm sure.
On Monday's where I work, we always have a meeting of the Senior Management Team on a Monday afternoon. As such I had the morning to myself so I thought I'd spend a bit of time on the Wii-Fit (which I've mentioned before).
Well, I totally overdid it. My body and what little muscle and conditioning I've had has totally turned to shit - couldn't do many of the exercises, although ironically my balance wasn't totally shonky. Plus when I got to work in the afternoon, I ended up staying too late.
Since then I've been getting better about managing my time and the rest of the week passed pretty much without incident. I spoke to one of the nurses who said that the effect of fatigue on people with MS is kind of like a cell-phone battery gauge, and getting ready for work (showering, shaving, getting dressed, driving in, parking) effectively takes up half of your energy store.
I know this is nothing out of the ordinary for people with MS but for fucks sake, I'm 36 not 63.
I shouldn't be in a wheelchair getting pushed around the hospital by my 62 year-old father. I shouldn't need support from my amazing wife getting in and out of the shower. Also, I shouldn't have to be so completely reliant on her. Here's a small but relevant case-in-point: I will never again go to the counter in a cafe to buy her a drink because I can no longer carry the tray. Plus my legs will probably be playing up by this point so she'll insist that I have a seat. I know she'd say that she doesn't mind but I fucking mind!
The fact that I'm a drain on her energy and time is something that I think about constantly. Plus the real kicker, the one thought that breaks my heart: I'll never play football with my nephews or children.
Hey Camel, could you manage just one more straw?
*crack!*
Whoops...
Today I heard back from Access to Work - I'm currently driving in and paying to park close by to where I work - but to claim back the petrol from ATW would work out at 25 pence a day. And they don't pay for parking because everyone has to pay for that.
The problem with my application is apparently that I still have a driving license and am still able to drive, following my disclosure to the DVLA.
ATW have said that they'll give me £6 a day for taxis to and from work. Which I would have to pay for and claim back. Plus they'll only do this for 3 months - because they want to know what the outcome of my DLA application might be.
Sorry for all this whinging - today has been a real pain in the arse.
On top of all of the above, since I've been back at work I've been feeling really out of the loop and not exactly 'up to snuff'.
I used to be so good at my job and I used to be really conscientious. Now I can't keep things in my head, I can't multi-task, I feel like a total flake. I'm starting to feel that some of my colleagues are thinking these things too - but I know if I tried to push myself to 'prove them wrong'. it would not exactly be beneficial to my health.
What a load of old crap.
Wednesday, 14 October 2009
the return
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!
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, 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.
Subscribe to:
Posts (Atom)
Posts
