I know i’ve replied once but after reading your latest reply I thought I’d give you some ammo for your arsenal lol
My mother-in-law was on pregablin for diabetic neuropathy, my friends husband is on pregablin for post-polio something or other he had polio as a kid and now get symptoms from it. I have another friend who again is on pregablin for something completely different. Soooo to be fair there are a LOT of things you could be prescribed it for.
You are quite welcome to chat to me anytime mate, I’m on-line all the time cause quite frankly it’s much more fun (and less exhausting) than house work. A clean house is a house without an internet connection
I get the same negativity from my family too and I do think its probabley the way I have explained why I go on this site too. I am glad you are staying on. Its a shame but it means I do not share much of the site with them anymore, it just makes life easier.
Funny you should mention the painful heel in your first post I get this too. I have tried alsorts to get to the bottom of it. I don’t share much of my symptoms anymore with anybody else other than on here as I find its the only place that can give me unconditional help. Its the same feeling a dog can give you when you first come into the house and they greet you unconditionally. This maybe an odd thing to say, but its me trying to explain why I share this site with other users.
I am not an Ms r either Poll. Yet this site has given me support and help when ever I have called for help. Please don’t tire yourself out though either Poll.
I’ve had a busy weekend so have only just seen this thread.
I can understand your hubby’s concern for you but it is the old story of being worried about something that he doesn’t understand. He doesn’t understand how this site supports you in a way that he cannot. Of course he loves you but men are so useless at talking about feelings so he probably does all the practical stuff and thinks that is all you need. Most of us come on here because the only people that understand all the random feelings we get from our bodies are people that experience the same thing and it doesn’t matter whether it’s caused by MS or any other neurological condition.
For many of this, this site fulfils a social need that can’t be filled by anyone else however busy our social lives are. I have lots of friends and family nearby but if I mention tingly toes or numb hands, they cannot begin to understand. When I’m relapsing and can barely walk they give me sympathy but I don’t want that, I just want understanding and they cannot understand because they don’t know how it feels.
YOU can do all of that, because you have experienced all of it. You are always there for us despite dealing with so much in your own life. You always manage to empathise, console, cajole and cheer us up. You’re always firm but fair. In fact, you are like a mum to us.
I know that hubby and carers think you got the idea for spc and pregabalin from this site but at some point your GP/neuro/urinary clinic may have suggested them anyway. Perhaps in future you should just pretend you came across the idea from an HSP forum and let hubby think you have joined as he suggested. Since he doesn’t look over your shoulder how is he to know? (Just in case he does, you can always use my little trick which I use at work - have two windows open at once and hide the offending one in the nick of time!)
How can your hubby and carers even think of taking you away from us? I’m so glad the mighty Boudica will not be told what to do!
HI Poll, I have no diagnosis, just progressively getting worse. Luckily not to fast, I dread going to sleep some nights, because its in the night something happens and I can wake up with more hearing loss, or more eye sight going or weakness, once this happens it stays. Yes I do have drop foot, going back to 2006 (suspected mini stroke)does this aggrevate your heel? I never thought of that.
What do you suggest, I have not told anybody else. It has been really painful escpecially in the evening.
Hi Poll, I’d miss you here. We all depend on each other, we know what it’s like with crazy nerological conditions. I remember talking to you about the spc before you had it. I wish I had someone to talk to when I was coming up to surgery. To ‘elect’ to have it hmmm if you didn’t have it you would be ‘electing’ to be out of control with your bladder! Keep giving your words of wisdom and jollying us along on the dark days xx
Hi Sarah, not seen you on line so much…nice to see you now. You were one of the spc gang who helped me with the decision and info to go for it.
Although Ive had some sticky (and you know what that refers to!) moments, but I got through them, thinking of yours! The spc system does mean so much less worrying about getting onto the commode in time. And trips out were fraught with risk, when I needed to go. Many total strangers in pubs and restaurants have helped pick me up off a loo floor!
Hi Poll You do what keeps you happy. Sometimes, no matter how much love and support we have at home, we just need a little bit more and this forum gets a lot of us through some bleak times and enables us to offer the same back. It can be lonely being at home, especially when it’s forced upon you after being at work…I know I’ve struggled…and having a voice on here can be a lifeline. Interaction takes many forms and this is one of them. (((( xxxx )))) Catherine Xx
Hi, no I dont think you have stuck your neck out by asking if I have become too occupied by health issues. I get why you ask and you are right in a way.
How can I answer this?
Well, my life is absorbed with my own condition and limitations. It is brought home to me all the time, whatever I do, I have to think where is my wee bag, is it full, have I trapped it`s tubing etc. I did have craft hobbies and stopped doing them, because of the soaring cost of supplies, plus I hated the mess they caused. I used to be an avid reader and keep looking at books and their synopsis on the back, but cant seem to find something to grip me enough.
I have a new book at the side of me now, but when I pick it up, I cant concentrate on it and end up here again.
Health issues is now a hobby of mine. I watch tv progs about it and being here, fills that interest too.
I kind of see myself as a bit of an armchair agony aunt! I get fulfillment from that. Plus, of course, it is a place where I can find support too. It is the kind of support no-one else can give me, as much as my family and carers try.
Poll, l have for years wanted to have a go at rug [proddy] pegging. l now have the hessian and have started cutting old clothes up into strips- then l have to cut the strips into lengths to peg the rug. Got everything off Ebay. And as you say - it does make a mess. l have large plastic sacks with the ‘rags’ in and a sack with the strips. So getting there. Always wanted to try quilting - with the sewing machine. l have a pair of leopard print velour slacks that l do not wear [My Bet Lynch - look] and l am thinking of adding them to the bag. Hopefully, once l get started - it will something l can do in front of the wood-burner with the tele on - and the dogs taking up all the room on the armchairs!! l can remember my granny making them. So hard wearing. Have you ever had a go - l know you have done lots of crafts - and yes it does all take up lots of space and is messy.
So your ‘pain’ ceased once you started Pregabalin. Thats interesting - as l think it is for nerve pain. Something to tell the urologist when you see him. l have never been back to the urologist who did mine - not since it was done - 18yrs ago. He is probably retired now. Hope you can find out why your heels are so painful as well.
Hi Frances, daren`t speak to soon or loudly, but (in a whisper) the heel pain was less this morning. I woke up and as usual my feet had come off their pillow, which keeps them off the bed, but I noticed the less pain thing! Tum is quiet too.
I have a huge test for it tomorrow, as we are going to visit our daughter and granddaughters who live in Crewe. So it will be a 4 hour round trip trundle in the van. Gonna pad my wound and tum well.
Been wanting to go see them for a while, as they are in a new house. My tum pain has prevented me from going.
Yes, pregabalin is a nerve pain.
pollxx
ps I did help mum with a peg rug eons ago. Dont fancy doing another, but good luck with yours, the leopard print will defo enhance the finished effect!
