I have lost count of the number of times I have sat down to write more on here and had a complete mental block! I last posted a blog 2 months ago, can’t believe I have left it that long!
My condition is slowly getting worse, I do notice it myself so I am sure people around me do too. My legs do ache more now and I am quite a bit more wobbly than I would like to be. The distance I can walk is getting less, even the short distance I walk to work is a struggle for me some days.
I still try to keep going though, any distance walked is better than no distance! I do still push myself more than I should really, not very good at taking things as easy as I should. My way of thinking is that if I don’t keep pushing myself then the MS will have chance to take over more.
I get spasms in my legs quite often and it does sometimes make my knees ache more than usual. It does occasionally make it difficult to find a comfy position in bed, so I do have some night’s with not a very good sleep. Being up for a wee at least 2 or 3 times doesn’t help much either lol.
I have changed my car to one that is slightly higher so easier to get in and out of, and it is an automatic so slightly easier on my legs to drive. Not ready to totally give up driving just yet so doing all I can to keep on the road. I can’t drive very far now, especially round town as that tires me out more. Easier for me when I go out on the motorway as not so much moving around in traffic then.
Apart from that I am not doing too bad, obviously have bad days and good days. I do have more bad days than good now but try not to worry about it too much. There are days when I feel down a bit about it all, but I don’t let it get to me too much. Worrying does not help anything, only makes it worse.
The weather here is already starting to get better, had some really nice days the last couple of weeks. Looking forward to the pool being warm enough to get into regularly, the exercise will be good for me and I plan on getting into a routine of swimming more often. I am hoping it will help me lose a bit of weight too, been putting it on and finding it hard to get rid of when I can’t really exercise much.
Trying to eat a bit more healthily, started making home made soup which is mostly vegetables so not too many calories etc. there. I do still have a Friday night takeaway though, got to have some naughty but nice stuff!
Well I think I will finish here for today, managed to write a bit more than I thought I was going to. I will try to get back into posting on here regular again, I will have a think about some different things to talk about as well.
Rob
Thought it was about time I wrote on here and gave an update on how I am doing. I cant believe it has been 3 months since I wrote the last blog, lazy bugger lol!!
Unfortunately my MS is deteriorating quicker than I would like. I am struggling more and more with my walking, I don’t go anywhere without my stick now. I may need to try using a crutch soon as I am putting more weight on my stick now, and makes my wrist ache sometimes. I struggle to even walk to work, which is probably only 3 or 4 hundred metres away.
It is particularly bad in my right leg now, I think quite a bit of it is down to damage done by spasticity. I get quite a bit of pain in my knee now and my big toe doesn’t go quite flat. This is down to when I get the muscle spasms (Spasticity), my big toe curls upwards and my knee either locks out or curls up as well.
I quite often struggle to find a comfy sleeping position because of my knee. If I lay flat on my back with my knee straight it is painful when I wake up. If I lay on my side with my knee bent slightly my knee is not so bad but it makes my hip ache instead. I have tried recently having a pillow under my knees, this seems to work but if I do it too much I get a bit of backache! I think that is the best option so I am trying it that way at the moment.
So far my left leg is not so bad, but I do sometimes get spasticity in it as well so I think it could get worse over time. I am quite a bit more wobbly now and I don’t have as much strength in my legs.
My arms are also getting worse, I don’t have as much strength in them either and I do sometimes get spasticity in them as well. When they are feeling bad I sometimes even have trouble holding a fork in my right hand. I lose quite a bit of feeling in them and even typing is awkward sometimes.
I had an MRI scan last month and I have been told that my MS likes my spine but is not too active on my brain yet. I think this means that my arms and legs etc. will get worse but I should keep my faculties for longer!
That is basically it at the moment, it sounds quite bad when I read it back but my spirits are still up and not letting it worry me too much. I try to carry on doing as much as I can, sometimes more than I should of course!
I am so lucky to have Hales for support. She does more and more for me and never complains, she is the main reason I manage to stay so positive about it all. She really is my soul mate, my best friend and the best wife in the world.
Well I will finish here for today and let you all have a read, don’t worry about me too much I am still fighting this battle as hard as I can. It is not in my family upbringing to let things get me down, just carry on and never worry too much about it.
Love to you all
Rob
It is almost 2 weeks now since I started on the new medication. It is called Fampyra so I just call them my vampire tablets lol. Don’t think they will actually turn me into a vampire, but I did wake up the other night hanging upside down from the door frame!!
I think they are doing some good, less than I would have liked but my expectations were probably slightly high. I feel a bit less wobbly when walking and I do actually seem to be a little bit quicker. They haven’t really improved the distance I can walk and I still ache the same as I did.
Still trying to decide if the slight improvement is worth €290 a month, guess I will see how it goes when I get towards the end of this batch. Maybe the effects will improve slightly more, hoping they will enable me to walk a little bit further too.
Apart from that everything is the same as usual. The spasticity continues to cause problems with my right knee, I think the tendons behind my knee are damaged a bit. I am going to try to see a Physio to see if there is any way to help with this.
The weather over here has definitely warmed up now, it got to 50.2c in the direct sunlight the other day! It was even 35c indoors in the shade so slightly on the warm side. It does affect me a bit, makes me ache a little more than usual. It is worse when it gets humid though, makes me more fatigued and aching quite a bit more. Definitely extra painkillers when it is like that.
Started on a diet just over 2 weeks ago and that seems to be going ok. Not sure what I have lost yet as I didn’t weigh myself before I started! I do feel as if I have lost a little bit so will stick it out and see how it goes. Lots of salad and watching the calories I eat for each meal.
Easier to do a little bit of exercise this time of year with the pool being nice so trying to get quite a bit of swimming done. Might need to see about getting an exercise bike for winter, but that’s ages away so will wait for now.
Well that’s about it for now, just a quick update on how I am doing. I will try to write another update in a week or 2.
Rob
My Life and My MS 