Just thought I would do a quick blog to update how I am doing.
The vampire (Fampyra) tablets seem to be helping a little bit, I am not quite as unsteady as I was and walk a little bit quicker. Only problem at the moment is that it is hot and humid here so the tablets are being a bit counteracted. I am probably better than I would be without the tablets though.
The heat and humidity are affecting me a bit more than it has before, but I was expecting that with the M.S. getting worse this year. It makes me more fatigued and makes me ache more than usual. Some days are better than others, today I have been more achy than usual so extra painkillers needed.
Apart from that I am not doing too bad, trying to swim every day so I at least get some kind of exercise. The diet I started seems to be going quite good, not sure what weight I have lost but I am fairly certain I am losing some.
I have been told by a few people that my attitude towards dealing with my M.S. is really good. I just get on with life and do whatever I can, I learnt a long time ago that there is nothing I can do to change the M.S. so why worry about it.
Cookie had to have a night in the vets the other day, she somehow snapped one of her fangs off and had to have the root removed to stop it getting infected. She looks a bit strange now when she yawns and you can only see 1 fang hanging down.
Well I think that is about all for now, no other news really. Life just goes on as usual.
Quick update
Still taking the Fampyra tablets despite the cost. Also started having acupuncture and some kind of cranial massage. Not sure if it is just one thing that is making my walking better or a combination! So will continue with them all for now.
I have also started attending Yoga classes. The instructor has helped people with MS before so she is tailoring the classes to my abilities. I am really starting to enjoy the classes, which I wasn’t sure if I would or not. Enjoying the challenge of pushing myself a little more every time.
It is still very warm here and we have had quite a few humid days as well. This makes my MS worse, so most of my improvement so far is being cancelled out by the weather. Hopefully once the weather starts to cool down I will notice more improvement.
I am hoping that I will continue to walk a bit better, and hopefully build the strength back in my legs a bit. Fingers crossed, I am hoping to be able to get back to doing a bit of scuba diving next year!
Still sticking to my diet, quite hard sometimes but doing a lot better than I thought I would. Not losing huge amounts as I can’t really do much exercise to go with the diet. I think I am slowly losing some weight though so will stick with the diet as well.
Everything else is the same as usual, still have times when I would chop my legs off if I had a chainsaw lol.
I was hoping to arrange something for our wedding anniversary this year as it will be 20 years, but because of the extra money for tablets and the other stuff I just can’t afford to. Quite disappointed, with it being our 20th year married.
Well, can’t think of much more to blog for now so will finish off and get this posted for you all to read.
Wow, I can’t believe that I have not blogged for so long! No excuses, it just hasn’t happened.
Guess I will update on where I am in life right now.
My MS is getting slowly worse, but that’s why it is called Secondary Progressive as it just steadily gets worse.
I am still doing Yoga and enjoying it. I am also doing other exercises as well, including swimming as the weather is good here at last.
I am not really going to get much stronger and definitely not going to stop the progression of the MS. All I am hoping to do now is slow it down a bit.
My legs are definitely worse, I struggle to walk even short distances now. My arms are deteriorating as well. Some days I even struggle to hold my fork to eat with my right hand!
Despite all this I still try to stay as positive as I can and continuously push myself beyond my limits. I am not prepared to slow down and not ready to take it easy. Anybody who knows me will know that I don’t give in easily or quit when the going gets tough.
When I was a kid I was small for my age and the perfect size for bullies to pick on. My dad told me early on that the best way to stop a bully was to stand up to them. So that’s what I did, and never really got bullied as a kid. Yes I occasionly got beaten up but I got more respect by not backing down, and even became friends with some of the ones who tried to pick on me.
MS is now the bully in my life, and as always I will stand up and fight instead of backing down! I am not a defeatist but I am also not stupid. I know that this is a fight I will probably never win, I really can not see a cure coming out in my lifetime. That doesn’t mean I am going to stop fighting. I plan to fight this to my last breath, I will not go down easily and will do whatever I can to drag this out as long as possible.
If fighting it all the way means it might progress slightly quicker then I am fine with that. I can’t remember who said it or where I saw it but there is a saying I like. Its better to burn out than to fade away!
So I stay as positive as possible and put a smile on my face. If the way I am inspires others to deal with their problems then that is a bonus. At least I will be making a difference in the world!
Anyway that’s enough waffling for today and I am determined to get back into doing this blog regularly again, so plenty more time to bore everybody with my drivel!
Till the next time
Rob 😁
My Life and My MS 