Thats it really, not a huge surprise (but I had just been struggling on so hadn't thought about it). DH in America till Saturday, parents in Scotland, kids at home so staying out of there way.
Feel tired, bit teary, a bit relieved that my inability to walk more than ten minutes isn't me being lazy or not determined enough. Just actually that I need to make some life style decisions. Never been ill really in my life, I used to love walking, used to walk all over London. Sad that won't be able to do that again, but happy that I did loads of adventrous stuff when I was younger.
Just wanted to write it down. Thanks for listening.
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Life-limiting illness
Just diagnosed with MS
222 replies
Dededum · 08/07/2013 18:20
OP posts:
pollywollydoodle ·
03/08/2013 02:27
i'd 2nd the reduced carbs at lunchtime but i have a 1.5 hr nap every afternoon as i am zonked then and am good for nothing all evening without it. i tend to only sleep 6 hrs or so overnight but it seems to be enough for me....and i can catch up on reading and mn
if the stiffness is because of spasticity you might find it helpful to sleep flat on your front or back towards the end of the night rather than in a foetal position as it stretches the right muscles.
LadyMaryQuiteContrary ·
03/08/2013 09:49
Fingers crossed. I used to wake up loads and was so exhausted in the morning that it was hard to function. I was training as a radiographer when I was diagnosed and I'd have to take time off to sleep, I wouldn't have been happy caring for people when I was that exhausted. I was pretty much pushed off the course because of it. It was a blessing in a way as I'm happier now then I've ever been.
Physical activity can be exhausting too. I rarely go to the supermarket as I have to carry the food back which causes pins and needles/numbness in my hands. If I do have to go, I'll buy a little but I usually order online. It makes things a little easier.
pollywollydoodle ·
03/08/2013 10:22
oh and he does a lot of the cooking when it's a warm day...i do prepare stuff to be cooked though 
LadyMaryQuiteContrary ·
03/08/2013 10:54
I hate shopping (and it's just me so if I don't do it...). We cheat and have quick cook food when I'm knackered or can't be bothered. 
Quick cook filled pasta takes a few minutes, add a bit of salad and that's it.
LadyMaryQuiteContrary ·
03/08/2013 15:11
Sounds like a good, relaxing day I don't think people realise how much we do until we stop doing it. It's great that he's pulling his finger out. I've learned that cleaning doesn't need to be done every day, it just gets messy again.
LadyMaryQuiteContrary ·
04/08/2013 10:42
Moody Nope. They offered interferon a few years ago as I'd had three relapses in a year and a half (2010) but I thought that they were stress related so I wanted to try to cut down to see if this helped (and I hate needles!). I ditched the course that I was on (it was a NHS one so I was working on my feet all week with a course leader from hell) and I hadn't relapsed since until March (2013) (some kid on the bus sneezed in my face and I caught his cold. The cold led to labyrinthitis which led to a huge relapse.) The consultant said I'd need to have a relapse within 2 years to qualify for them so I offered to be a test pig instead. I'm waiting to hear back about this.
They can prescribe amantidine or provigil which really helps with fatigue but they are amphetamine based and cause constipation and crazy dreams/insomnia. There's a chinese doctor in the Eagle Centre Market next to the theatre who does acupuncture which helps the symptoms though. I went when I relapsed in 2010 and I'd had a squint for 2 weeks due to the MS. The day after I woke up and it had gone. The burning in my legs is now rarely there but I do get pins and needles if I sit in the same position for a while.
I think we live in the same city. Would you like to meet for a coffee?
LadyMaryQuiteContrary ·
06/08/2013 09:42
Hi, Moody. Just let me know when you're free. I saw one of the nurses a few years ago. She couldn't tell me why they worked, just that they reduced the amount of relapses. There's a couple of different types of injections; one which is once a day (and has less side effects) and one which is every three days I think, this one has more side effects but, as polly says, it helps to take it at night.
Sounds very good, Dededum Doesn't mean you have to do all of the housework though!
Dededum ·
06/08/2013 11:16
It's weird and a little disconcerting, DH has totally changed, the dynamics of our relationship has totally changed (for the better). He was quite dependent on me and (other than the important earning of money) I was definitely the person who tried to push things forward. Since the diagnosis he hasn't stopped. I feel a little redundant, not used to it
He is I think enjoying it, he feels empowered and I keep telling him how great he is!!
OP posts:
LadyMaryQuiteContrary ·
06/08/2013 11:21
It sounds fab! Put your feet up and make the most of it. I'd bugger off to a spa for a bit of pampering I think boys and men like to feel useful and needed.
How are you today? Physio can be quite exhausting.
pollywollydoodle ·
06/08/2013 13:57
moody the ms trust do a good booklet about the injections...i take the one on alternate nights and use an automatic injector . the other main one is once a week and in the absence of any reported difference in side effects or effectiveness, i based my choice on the fact that the weekly one had a much bigger needle and you had to inject it manually (at least you did back then) and i'm a wuss
ms nurses vary, i hit lucky initially in a specialist centre with a great team but then i moved to a local stand alone nurse who had only just moved into neurology and who has been off sick for much of the last 3 years
moodyblue ·
06/08/2013 21:01
Hmmm it definitely is a postcode lottery. I'm going to take Rebif which is 3 times a week. I think there is a pill (gilyena or something) but its not a first line treatment. There's also tsyabri which is monthly iv nfusion but again you have to have tried the beta interferons first. Get me! Can you tell I've been reading lots
Had a funny do in tesco yesterday. There was a huge blue sticker on the floor saying price promise or something. As I approached it I pulled up sharp cause I thought it was higher up and I was going to walk into it! Woman at the side of me was giving me very strange looks 
So it seems my depth perception is a bit off . Hoping its a blip cause due to drive to north Wales on Friday for a week with my boys.
Lady mary I'm due back at work when I get back from hols - could you do a weekend?
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LadyMaryQuiteContrary ·
06/08/2013 23:44
I'd get someone else to drive, moody (means you can have a rest )
Can do weekends, just let me know when you're free. Saturdays are better as I can abandon ds for an hour or so in the games shop.
Legoland is great, I hope your dc had a lovely time
QMC is a trial centre, polly. Are you able to get a referral?
almostamrs ·
07/08/2013 22:09
waves
i have just been diagnosed with ms in june and im a patient at QMC so thought id say hi
or 
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