I would like to keep this post as purely MS related ranting then people can read or avoid as they like . You have been warned.
The MS war. I have started to do a set of exercises to help with my strength and balance which is pretty shocking at the moment. I have a new neuro physio who seems pretty good. So I start with just standing for 1 minute , then 1 minute with feet close together and then with my eyes closed . There are a few other things all designed to try and switch on my balance system and get my nerve pathways to handle the messages needed to work. The human balance system is a combination of a few things – parts of your brain, eyes, spine and nerve pathways in your legs. So it’s all very complicated and hard to understand. Same for your motor function . I have always found it hard to understand when my muscles are ok why I feel weak .
I have to live in hope that I can improve things and it will not be for a lack of trying. It does seem like war at times and I have to think that I am not doing all this in vain and it’s just a waste of time and effort. I must not give in or all is lost.
The trip to Botswana is helping to fire me up and keep the schedule It’s January now and I have until August. I wish I could make people aware of how this affects you. I can see why some people with MS end their lives. But that’s not what I’m going to so. I am going to keep a healthy interest in my hobbies and my friends . Spend money which I can hardly afford on Toys (Guitars , Cameras etc) who cares ? Try and get out in the world . Probably drink too much , eat too much.
Hopefully I will be able to report on some progress. Early days at the moment.
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OK so doing a lot of standing feet together, feet apart etc etc. I think (and it’s not clear yet) that I feel a little bit stronger , but it’s early days and it might be wishful thinking . Trouble is, I clutch at straws . However I think any improvement is going to be gradual. Standing with my feet close together with one in front of the other is really difficult and I can only do a few seconds before I’m grabbing the furniture to stop me sprawling on the ground, but I guess it is challenging my balance systems.
It’s then end of Jan now , amongst other exercises, and I seem to be able to stand with my feet together for 4 minutes which is an improvement . However I still get the really bad MS days like yesterday when it’s just so painful and tiring to get anything done so I rest. I think that things are still generally on the up. Did loads of exercises this morning and feel ok. It’s easy to get impatient for results but my Physio says that neuro problems take a lot of work. It’s a bit like learning to play a musical instrument it’s called muscle memory but really it’s brain training . Nero plasticity is what my Physio says makes these changes possible. Lets hope I still have a plastic brain at age 60 !!
Now February. I have been carrying on with the balance exercises with short walks and I am getting better at standing for longer periods so far so good. I find however that I still have times when I can’t move at all well and I am in pain so I sit down for a bit and it usually gets better. Take this morning, up at 6:30 lots of pain , two cups of coffee and a sit down , do a bit of computer work. It’s 08:30 and I feel better and going to do my exercises now. My physio has extended the scope of some of my balance exercises to challenge me a bit.
Exercises done progress is slow but at least there is some progress.
I am going out to my MS Society meeting today which is always good. Progress is slow with the MS . One of the problems is that occasionally I have days of pain again and mainly due to the arthritis and this stops me doing exercises . I don’t think my pain meds are strong enough so I am going to sort that out. I am finally under 14 st , only just 13st 13lb ! However , in the right direction. I must try and keep my exercises going cos they are making a difference .
I have also managed to walk 1/3 mile with varying amounts of fatigue but I guess if I could walk 1/2 mile I would be pretty happy. I have bought a rollator – I am finding it difficult mentally to get used to it and so I will continue to mainly walk with my sticks. The advantage of the rollator is that you always have somewhere to sit if you get tired and you can also carry stuff ( camera, sketch pad , beer etc). This maybe good for Botswana . It folds up so I can get it on a land rover pr whatever they use .
well into February now and I still had any problems with diet I am back over 14 stone again drat it’s really difficult when you are forced into being so sedentary. Never mind I will persevere. I am walking a third of a mile which is good and doing my balance exercises.
Weight 14 st 1 so not bad but not good. I have bought a rollator which is a 4 wheeled thing you push like a pram . The idea is that you can use it to improve your balance and walking. You can also use it to sit on if you get knackered. I have had a problem with this mentally because I don’t want to be the pathetic disabled person with a walker when I used to be the fit athletic runner, tennis player etc etc bloody etc. I discussed this with my wife who just says , well if it helps . Damn it, I know, I know. I know. Anyway I used it yesterday and walked , with stops to sit down and rest, 1/2 a mile. So it may be worth it.
Sometimes I just want to bellow four letter words. It’s like a pressure cooker inside my head and I occasionally have to let it out. I don’t think there are many people who understand this feeling of desperate hopelessness which grips me sometimes. It isn’t like that all the time and isn’t like it now but there are times ! I
ok so it’s now the end of feb. Some good news I have finally got my meds for the arthritis sorted out and my back pain has gone . I feel so much better , my mood is great and I am optimistic. I still have the ms obviously but no back pain fantastic. I will be able to do more exercises . I haven’t been out walking much , the weather has been shocking.
weeellll ! I made it to Botswana – trip of a lifetime. But now I need to get back into good habits again because I haven’t exercised properly for a while. Botswana was in cars or boats. and I really need to get back. I was doing a lot of upper body work which really helped me get in and out of the land cruiser etc so will get that going again.
Started new exercise regime. It’s been a bit of a hit and miss some things seem to be working well but I have had problems with fatigue and also pain from both MS and arthritis. My upper body exercises are helping and so are the new exercise from the physio – these involve walking backwards and balence exercises. I am still doing a lot of the others as well. If I do everything apart from a walk , it’s 3/4 hour so it’s a reasonable work out for someone like me.
I just need to have a reasonable stretch without other issues to get into it . I truly feel I can improve my walking. We shall see.
I may do another loony trip somewhere. My friends were talking about Egypt which I got excited about but now not sure because would it be too much walking , access not good etc, I will have to look into it. At the moment with the political situation in Gaza it’s probably a bad time.
Fran fancies a cruise up the fjords which sounds good . If we can find the right kind of ship which will suit us.