Monthly Archives: December 2020

MS and Exercise? Yes!

This is a piece from my calendar I wrote today:

… Graham helped prune back that peppercorn tree at the pond a bit, but then moved the panel to a sunnier spot. Sunnier in the morning, anyway, I’ll check out how it goes during the day.
When it was moved, the fountain went better than I’d seen it going … That’s a welcome thing, for sure.
While I was out there, as Graham was putting down some aged manure for the mandarin tree, I did some steps on one of the railway sleepers. Twenty up and down steps. Something to consider doing a lot more often, when I go down to my pond-side thinking spot. I was looking at the big tree stump over by the eastern fence too, and wondering if that would work as a step up spot, a bit later, if I feel I’m getting stronger in my legs …
Plans are good to have.

Our pond has new solar powered fountain, but where it had been placed was quite shaded for much of the morning and well into the afternoon. Now though the solar panel is in sunshine for most of the day, later on, especially from lunchtime on, until the sun goes down.

And those railway sleepers I mentioned, I love them, we’ve had them for years and years. Initially we used them to mark out a vegetable patch, but that plan didn’t last much more than one season, and the sleepers have been just been lying around in all weathers, becoming ever more interesting looking, and aged. But when we had the pond made more pond-like again, those sleepers were brought to the pond, marking out a space around the pond.

It all looks good, and safe, with far fewer trip hazards, which is an excellent thing, because I am quite an expert at finding things to trip over! And I’ve been thinking a lot recently, about building up my ability at going up and down stairs/steps. The main reason this became important is that my son has recently bought himself his first home, and there are three steps to get into his front door.

The first time I saw those steps, I was horrified, how would I ever climb up them! But I had to climb the steps, so I did it, not easily, but they were climbed, and I was able to go inside, to see inside his house. I’ve been there a couple of times since the first time, and the time before last, I decided I needed to improve my abilities with going up and down steps.

And so to my point – I am going to use those railway sleepers, and yes, that big stump too, if it’s safe enough, to become a proficient step/stair climber! I’ve also found an exercise program written for me by my Support Worker, and I am going to work on following that, too, as much as I can. Becoming fitter, and stronger, what a fine thing that will be to work on in the new year.

And if I get started with it while we are still creeping through to the end of 2020, even better! I might be in the habit of working out, by the end of January! After all, ‘they’ say it takes 21 days to form a habit, whoever ‘they’ are!

So these are my wellness plans for my future, getting better able to make my way in the life I want to live! Fitter, stronger, able to leap up stairs, two at a time! I’m keen on plans at the moment, and this is a great one, for sure. By the way, after I began writing this post, I was out by the pond a couple of more times, and yes, I did more step us, and probably did at least fifty of them today, all together, Happy with that, fur sure, with many more to come!

Let me know if you have anything to say about any of this – safety tips, exercise ideas, tips about maintaining a healthy pond, anything!

DMTs and Skin Cancer

I recently saw my neurologist, and we discussed the possibility of changing my MS medication to one of the newer ones (Ocrevus). The reason for the possible switch is the fact of my increasing skin cancers that my GP has been treating me for.

I am middle-aged, got burnt many times as a youngster, and I have very fair skin, prone to sunburn if I stay outside in the sun for too long. But one of the things to watch out for with my current MS medication (Gilenya), is cancer, including skin cancer. So of course this is of interest to both my GP and neurologist.

The DMT suggest to me by my Neurologist, as a possible one to move to, is Ocrevus, so of course I’ve been looking into that one, online. I’m not having much luck in finding many studies into the relevant skin cancer risks for this medication, apart from there being one. The main cancer referred to in the discussion on this Ocrevus medication, is breast cancer, and because of my mother’s breast cancer, I am possibly more likely to get this, than the general population, so I am wary about the medication on that regard.

I’ve also read of increased risk of getting more herpes-related infections, and as a person with the herpes cold sore issue in my body, I’d definitely rather not open myself to getting more of those. And apparently there is a greater likelihood of UTIs too, oh joy, urinary tract infections! No thank you, I had one of those, first for ages, recently and it was the worst ever for me. I don’t want that happening again, ever, if I can help it.

So the skin cancer issue is one thing I may be getting more of because of my current DMT, Gilenya, or it may not be, it could just be the fact of me getting older, and things going wrong more often because of that. My GP is more concerned about this that I am, actually, and he is the one with the medical degree. But I also think he’s being a bit over the top about it. I may be wrong though …

So, pale freckled skin with much sun damage, that can cause skin cancer, and I certainly have that. Is that why I’m getting these skin cancers? Who knows, not me. This is going to require much more thought before I see my neurologist again next year … I definitely welcome any thoughts about this from anyone who has had skin cancers and has been, or still is on either Gilenya or Ocrevus.

More NDIS News

I am still steadily, and slowly using the money I have available to assist me with meeting the services and goals in my NDIS plan. I am a long way from using up all of the money assigned to me, and I’m thinking about how this plan could better meet what I truly want and need to live a better life, with my disabilities brought on by Multiple Sclerosis.

And at the moment everyone is focused on both Covid, and Christmas, and so I won’t be able to connect with my Support Worker for a few more weeks, I don’t think, and I may not see my Cleaner on the appointed day either. That’s OK, these things aren’t life-saving, but on the other hand, they are still life-enhancing …

I’m happy about the bigger items I have now, thanks to the NDIS, one to assist with safety in the swimming pool, the other landscape issues to improve access to, and enjoyment of, a particular place in our yard. The wellbeing this will bring is well worth the whole tricky process of getting it done.

There will be opportunities for exercise as well, and earlier today, I was able to do a few things myself to improve things, which was tiring, but also very satisfying! Being able to do things outside in the garden is a good thing indeed, and the fact that I was working at making our new (NDIS supported) pond, was even better.

I was trimming back some branches from the shade-providing tree next to the pond. The shade is good to help me stay cooler, but not so good for the solar power pond pump, which needs sunshine to work! The sun moves across the sky, of course, and the solar pump is sometimes shaded, sometimes not shaded, and so it works or doesn’t work accordingly … I will talk with the person who put in our pond, and the pump to discuss this possible moving of the pump a little bit more into the sunshine. Or maybe I’ll read the actual directions, and look at moving it myself … Oh the power of being a do-it-yourselfer!

So this pond is a much appreciated item being provided by my NDIS funding, to improve my use of aspects of my outdoors area of my home, and also helping with my access to this particular area, with the way to the pond being smoothed, and the shaded area being made more accessible.

Life is getting better and better, and I thank the NDIS for that. And when Summer really kicks in, after Christmas, I’m sure the new NDIS safety rail for the swimming pool, where I’ll be able to do aqua-related things, and actually safely and easily get out of the pool after, will be appreciated!