I’ve been feeling so much better now that I am back on Pregablin, thought I was on to a good thing.
The anxiety that goes hand in hand with MS was under control, the depression, moods, lack of energy, pains in my legs.. the list unfortunately goes on as other MS’rs will agree there are go many hidden things to cope with when you have MS. I actually was feeling happy.
Well that lovely feeling that I was doing ok came crashing down last week, the eye starts twitching constantly, I swear people can see it, its that bad. But when I look in the mirror I can’t see anything wrong. So I chose to ignore it, well we do don’t we, it will go away on it’s own…. won’t it?
Another of those hidden aspects of MS is what it does to your body. Well lets just get down to the nitty gritty, no one talks about it, Oh the shame, how dirty you feel. Your bladder decides its going to embarrass you in public.
Incontinence shhhhh not too loud someone might hear.
Yes Incontinence we all know what it is, how many would agree they have had a whoops moment? Well yes that’s just part of life. But when you are happily sat in work and decide to stand up to do something and you just pee your pants. I had no warning, no sign from my brain or bladder that I needed to visit the bathroom, nope just stood there I had lost complete control. I’m still mortified. It didn’t happen the once, it happened several times over the week. So those that know me now know why I wear black trousers in work.. and long tops. I rang the MS Nurse ‘please leave your name we could get back to you sometime’ phone number. The next day a lovely MS Nurse calls me back and whilst huddled in a corner in work hopefully away from anyone who could hear, I explain what has happened.
Cut a long conversation short, I thought it was the Pregablin, (these drugs maybe wonderful but the side effects can be worse to bear than the reason why you are taking them) Nurse thought different, oh its a rare side effect it won’t be that. I was to stop the drug, I refused see paragraph one for reasons why. We compromise rather than 200g go to 100g a day. And call her back in a few days. Well I tried that, nope it was awful, this weekend I felt the anxiety coming back, felt all down and stressed, I had nothing to be stressed about.
Then this weekend, after spending a fortune on Tena Lady (I should have shares you know), feeling quite upset with myself that at 46 shouldn’t need to visit that aisle in the supermarket yet, but I have MS to thank for that. My eye decides to get worse, and still I think ah it will get better… But later think ok I should visit the eye hospital but didn’t get around to it until yesterday afternoon.
Well good and bad news there, good news I have Uvitis and Optic Neurosis still in remission, and it’s still kinda quiet there, BUT the symptoms of the twitching, painful eyes, gunky but nothing there is possible the start of a big kick off in the eye department. Nothing to be done no steroids offered just sit and wait for it to happen. Last time I lost the sight in my left eye, it came back but that does scare you so if it does happen pop back for the steroids.
Was told to contact the MS Nurse as this could be an MS relapse, especially with other body parts publicly humiliating me.
Take out the back and shoot me now!!!
And so today anxiously waiting for the MS Nurse to call back, she does and confirms I’m having a MS Relapse and my consultant will not offer steroids for that (her words) but if it gets worse she will get me to see another Dr who will give me the drugs to help. Now all of a sudden I fit the criteria for those DMD’s (Disease Modifying Drugs).
Please take me out the back and shoot me now.
I may not look ill but geeze my body can chose it’s moments!!!
Sorry it’s a long one, but there were subjects my fellow MS’rs pre/post HSCT thought you should know. And don’t get me started on the invisible ants crawling up my legs.
And yet at the end of the day, I’m still quite calm and cheerful So a bit of the Good, Bad & Ugly world of MS and none of it you can see. I shall take things easy for a while and let MS do it’s thing, I have a mountain of books and box sets to get through. Although disappointed as I’ve seen all the Big Bang Theory season 9 and impatiently await season 10