I know what you mean it's no way to live but it's our life's now so we have to find a way to live with it. I find if I'm in bed resting (most afternoon's!!) I find watching t.v keeps my mind off my health, I record programmes or films on my Sky box to watch. Or if I'm downstairs I listen to music while on my laptop (as now) to keep my mind off pain & spasms. Also if I want to cheer myself up I watch Prince Concerts on Utube on telly which does get me boogying on the settee!! Or I read!!
Thank you both for your posts and good wishes. I agree that it's best to keep yourself distracted. I find that YouTube is a good source of entertainment, primarily music. I also suffer from (as yet undiagnosed) Restless Leg Syndrome and again: often get this whilst in bed, whilst it's not painful as such: it's incredibly irritating ... like an itch you can't scratch!... so again: having the TV on helps distract a bit... in fact I find that the TV helps me doze off to sleep!
Yet again I can relate, I used to suffer from restless leg syndrome a lot when I was younger (I have a vague memory of taking medication for it?) and my partner (now ex partner) was always complaining about me kicking him in my sleep!
It still happens occasionally, and I feel more guilty about disturbing my cats than I ever did about disturbing my ex!?
Maybe it's because THEY don't hog the bed, steal the blankets and drool on MY pillow!?
Oh it's SO nice to be single!
Anyway, good luck with it all Amanda, feel free to send me a private msg if you ever feel like a chat or just to have a good whinge about things!?
I'm very good at listening and whingeing!
As I've posted before my Husband suffers with restless leg syndrome and used to kick me in the legs and I would wake up with bruises down my legs and it was like he was playing football in his sleep! Our main concern was with me having Osteoporosis he would cause me to brake a bone in my leg so I was banished to another room. Thinking about what with me having Epilepsy as well (And we both snore!) it was a good idea! So I sleep in my own room which I decked out how I like it!
Thank you both for your posts and I really sympathise with anyone who suffers from Restless Leg Syndrome, particularly as it seems to be one of these conditions on which little is known. As you say, when you have Osteoporosis you would be concerned about being kicked... it would keep me awake! I too have my own double bed to myself. It's a wonder my hubby doesn't wake the whole street when he snores! ... and now I have these other difficulties (muscle spasms, RLS etc.) I think it's best for both of us! When we had cats ... if one of them was poorly I would have that cat sleep on my bed, it was reassuring to just have to wake, turn the lamp on and confirm that our cat was doing OK. I don't know much about epilepsy, does it just occur randomly? You do have a lot to endure, my sympathies.
My Epilepsy is under control with meds now but before the seizures would happen when they like and where ever they liked. At my worst I was having 10 seizures a day it was exhausting, at one point we went to watch speedway at Coventry Stadium I had 5 seizures one after the other in the stands and was rushed to Coventry hospital, I was more concerned that I missed the Speedway! But now it's a military operation if we want to go somewhere for a day out. I must see how I feel the day before, then the night before and finally that morning. We have to take blankets, cushions, medication list, medication and drinks. It does put you off going out!
Your epilepsy sounds really awful but it was good to read that you've found effective medication. Having said that I can see that impromptu outings will still be a thing of the past which must be tedious ... there's a lot to be said for spontaneity! You mentioned your medication list, it sounds like you're on a lot of medications ... I'm only on 4 (five at the moment, from last Saturday, with the UTI antibiotics) but I still have to write down the time I took each pill or I would be hopelessly lost! I My hubby takes 8 daily medications and some of these are twice daily but doesn't write them down. I'd be totally confused and end up taking the same one twice!
I'm on 10 tabs in the morning & 12 tabs at night, I'm pretty good at self medicating myself now (the nurses said so when I was last in hospital in January!) . I also use the medication boxes that have the days of the week on and morning, noon & night compartments that also help me. I order my medication online and have it delivered to me by the pharmacy I use. I have a draw in my bedroom for all the medication boxes, my friends say I have my own Pharmacy in bedroom!!!
You certainly need to be as well organised as you are with that number of medications!
As planned, I went to see my Dr on Tuesday (about my UTI) and also mentioned the 'Charley Horse' muscle spasms. Interestingly (in view of our earlier Forum discussions) she said that there is a relationship between Restless Leg Syndrome and muscle spasms and she asked if I also suffer from Restless Leg Syndrome and when I said that I did she said that in that case she could try me on Ropinirole (for the first two days: one pill daily and thereafter two). This gradual approach is to allow your tummy to get used to them (apparently they can cause nausea). They're actually primarily used for Parkinsons' disease. Strangely enough ... about 14 hours after my first pill I had a bad muscle spasm, again: whilst in bed and this time, for the first time affecting a second muscle. However I wasn't expecting instant results from the new pills! Time will tell. I will report back here concerning how effective I find them. Strangely enough my Dr said that she also suffers from RLS! I was also given a blood test for iron ... I think she said that low iron levels can cause RLS, I will get that result next week.
I've been on Iron tablets for last 6months due to my Anaemia, funnily enough my spasms are pretty bad today! Will have to see how you get on with the tabs your trying and if you get results will ask after them when I next see G.P, it maybe a no because of the mix of medication I'm already on!!
My Dr wants me to try the pills for 2 or 3 months to see how I get on with them, they do have an especially long list of side effects... some quite bizarre! I will certainly let you know how I get on both in regard to leg spasms and RLS. RLS is so irritating... you just can't relax with it can you? According to what my Dr said ... it could well be that your anaemia is related to your RLS so it's a good thing you're on iron pills or your RLS may be even worse!