Well you may have noticed the time on my posts in the night, wide awake at 4:00am but so was Jackie so we sort of chatted like ships passing in the night. YEsterday I phoned the MS nurse at clinic, thats not actually true she phoned me twice I phone and left a message the day before. WHen she phoned I poured my heart out to her I am feeling so depressed that these gabapentin are making me worse. She went througgh to see the Neuro and he said come off them plus he is putting me in for tests for the Baclofen pump.
Oh Don, what a bummer, I think you had high hopes for the gabapentin, never tried it myself so I can’t comment on them.
You did the right thing getting in touch with your ms nurse, hope they can push things along quicker for you, it needs sorting sooner rather than later.
Sending some (((((hugs)))) to let you know we understand and empathise. Hope things improve for you.
I’ve just read your blog, Don, so sorry that Gabapentin didn’t help you. I am finding that I keep having to increase the dose (I’m taking it for nerve pain in the soles of my feet) but it hasn’t made things worse, good luck with the Baclofen pump.
Sorry to hear that Don… let’s hope you have success with the Baclofen pump. I’m sure you will so hang on in there.
I’ll catch your blog on Twitter.
Thinking of you… btw I’ve been meaning to ask you, do you ever go to the Tate Margate? Been a while since I’ve been to see any art, but I did go to the David Hockney exhibition at the Royal Academy a couple of years back… loved it. Reserved one of their wheelchairs and got taxi there and back. Not often I’m able to do that sort of thing and it was a great day out (oh and it involved a cream tea which naturally was the highlight of the day!).
Pat I get there once in a while Heather is not an art lover but daughter number 2 takes me when she can usually in school holidays
I am now wide awake having slept ALL day and I do mean sleep I had a brief spell awake for an hour and then again or an apple and the Heather was worrying about me because I cut back on the Gabapent faster than reccomended I dont know if it was that or the stress of an MRI this week. 45 minutes in that thing,
GGOING TO PLAY cards pooters in bed dont work.
How are you feeing ? I forgot to ask
Hope you OK.
Don
Wendy thank you I am scared of it BIG TIME I was a ruffty tuffty builder now I am an emotional wreck I even cry at adverts and cant watch a film without blabbing
Pat I would have liked to see tthe aHocckney exhibition I saw him on tvv doing stuff with cameras and I love photography I havent done any of the London galleries in 100 yearrs since I was a little boy
Pat I would have liked to see tthe aHocckney exhibition I saw him on tvv doing stuff with cameras and I love photography I havent done any of the London galleries in 100 yearrs since I was a little boy
Don it’s awful that the Gabapentin hasn’t worked for you. It’s my saviour, I can tell when I’m late with it or miss a dose. Do you mind me asking whether you’re taking it for pain or spasms? I was a nurse and physically robust but have been reduced to a bit of a physical wreck, and emotionally I’m just like you, I cry during every film, advert and even the posts some kind friend of mine involved in dog rescue posts of homeless canines with cute faces. It’s ridiculous! But really entertains my daughter who doesn’t try to hide her amusement at my distress, inconsiderate soul that she is. And I don’t even think I’m depressed, so you’re not on your own.
I hope they get you started out with the pump. Why does it take so long to organise? Is it due to physical requirements, does it have loads of side effects etc, or is it cost? I have no experience of them but my experience of syringe drivers makes me aware of the care involved in looking after them and making sure they’re re-filled etc. You would probably be referred to the district nurses who’d have to keep checking and dealing with it, or is it implanted surgically?. But if it works it’ll be worth all the hassle, fingers crossed for you.
Hope you have a MUCH better day today. 45 minutes in the scanner is horrid… I’ve had one that took that long as well. It really seems more like 45 hours by the time you come out.
I also cry at anything now… in fact it’s usually not the ‘big’ things that start me off… but something really silly… and yep an advert will set me off. Must be an MS thing. Seems like everything’s an MS thing.
The Hockney exhibition was amazing Don. Gorgeous paintings of Yorkshire. I get so sick of crappy ‘modern’ art that it was great to see real art… landscapes…beautiful.
Hi Don- I slept a bit better last night , didn’t wake until 5.30, hope you did too. Sorry to hear that medication did not work. You get yourself all geared up for the benefits and then it is really disappointing when it doesn’t work. I started Amandatine on Wednesday so am waiting to see what happens next.
i also cry at the leas thing, but I always have. I was renowned for singing in the school choir with tears rolling down my face. And it is even worse now. One word can set me off.
i am resting at the moment as 6 of my grandchildren are coming here this afternoon as well as my Mum and Dad - so I am in for a riotous pm. I will probably sleep well tonight after a hectic day.
Don, really sorry it’s not been brilliant for you lately. Sounds like we’re all a bit down at the moment. I’m having a rotten couple of days here too. Soiled myself slightly yesterday. Mentally low. So many things to try and get done this month before the builders start. To cap it all the carers are short staffed. No-one to do my regular Friday wash & dress this morning so Ruth had to miss her weekly shop.
Jan yes go up to London and do tests inject liquid baclofen into spine …looking forward to that one LOL
Pat I am still envious of you and Hockney well I would be if I did envy.
Kev sorry you seem to be having it bad at mo as for a joke no can do but my kindle wants to call you Leg for some reason. Have you upset it for some reason? Maybe it’s the time of night it must be the storm rain lashing against the Windows and thunder and lightning. 4:00am as I type this…
Cath the pump is inserted under the skin as as tube to spine and what can only be described as huge staple s down spine YUK I am not squeamish I was a butcher slaughterman so seen lots of blood but when said blood is mine I tend to be apprehensive.. The gabapentin was for spascisty not pain.
Jackie hope had fun with grandchildren mine are good it’s my three kids who make most noise they revert to being kids again, it’s hilarious.
NINA stop sobbing you’ll start the rest of us off. I have tears in my eyes as it is.
Have I missed anyone out? Sorry if I have but I need a rest after doing this on my kindle in the dark. Heather woke me up then moaned the light shinning in her room keeping HER AWAKE I ask you.
Don, I see you were awake in the early hours again. I could not drop off to sleep last night legs jumping, hot, cold - must have been about 3 am I dropped off. all new messages read on here and Everyday Living. Too hectic a day maybe.
When I got my mobility scooter I said that I would have to keep it out of the way of the kids (meaning the grandchildren). But it was my two sons, first, who took it off to see how it cornered and how fast it went. They never grow up - but then it is no joke growing old - especially with MS.
Keep your chin up, and keep smiling - there is always a silver lining.I have now met (Virtually) a new group of friends.