My Health, My Responsibility!

Yes, I have a chronic illness, Multiple Sclerosis (MS) and it is an illness that doesn’t have a cure still, because the experts in such things aren’t sure what causes this illness. But they do know ways that may assist those of us suffereing from and with the various things having MS brings – muscle weakness, and fatigue are my main two symptoms. There are others for other people.

So I have MS, I’ve known that since I was diagnosed by a neurologist in 2010, and when he suggested I try a medication to assist, I was keen to stop myself suffering even more than I was at the time. So I began using one of the medications then available, Avonex, which was in the form of self-injection once a week. I don’t know really, what Avonex did, but it seemed to help, but those weekly injections were horrid.

When a new nedicaion came along, a capsule to swallow once a day, I happily changed my MS medication. I’ve been on this new med, Gilenya, since 2012, and I’m loving it! Sure there are a few after effects, and things my GP and I are keeping an eye on, but overall, this medication has been great for me.

But there are other things I can do, to keep well, too, and because I’m keen to keep mobile, and not needing a wheelchair, I do these other things, at least sometimes. One of the things my Neurologist told me right from the start, was that I should keep on walking, I can’t remember for sure if he actually gave me a distance to walk, but it may have been at least 500 metres, every day. So I do that, if not every day, then lots of days.

I’ve recently begun counting my steps and recording the number of steps taken, using the pedometer on my phone, and that’s working well. I measured the lengeh of my step, and every step is half a metre, so if I walk 1000 steps, I’ve walked 500 metres. I’ve written a bit about this, this morning, this is what I wrote:
– 1200 steps done, now having a bit of a rest … Missy was looking at me as if I was crazy, briskly walking all around inside, one end of the house, to the other, and back again, but she doesn’t face the truth of the bathroom scales every morning. I do, and even though I know why I got today’s result, I want a lower number tomorrow morning.
And walking more means I can go on walking, and I  definitely want to retain my mobility. I don’t need to go to any expensive gym, walking briskly inside and outside my home is enough, and I may add in some hand weight lifting later on today too, coupled with paying attention to what I eat, and reaching my ideal weight will be my birthday present to myself!
Two months to go, I can do this!

So that was this morning, and I will indeed lift those hand weights a little bit later today, and I will eat a healthy and light lunch, with vegetables and a little bit of fruit, as well as nuts, seeds and wholegrains, as is my usual lunch at home. I’ve been weighing in almost every day for the past couple of months, and I have a target weight in mind. I’m already within the healthy weight range, but at the top of the range, and I want to be in the middle of the range instead.

I’ll never be tall and slim, like my son’s greyhound, Sharon, but short and slimmer than I currently am, that’s my aim!

So if I am going to give myself the birthday present of reaching my goal weight, I have to get off my bum, and get moving around more, and keep on eating the best and most nutritious foods I can, and probably giving up the daily, small amount of chocolate would be a good idea. Perhaps once a week for the chocolate, as a reward if I’ve lost a bit of weight, would be a good way to go. Or as a reward for a certain number of extra steps walked might be an idea, as long as my weight was at least not much above, but preferably below, the previous weekly weigh in result.

If I eat well, exercise more, and maintain a positive attitude to life, who knows the ongoing benefits I’ll achieve! So far, apart from some skin cancer issues, which my GP and I are dealing with, my health is remarkably good. My heart rate is good – steady and slow, cholesterol fine, and my attitude to life is strongly Positive Polly, not Moaning Myrtle! I have family and friends who love me, I’m financially well enough off, and have little to worry about, apart from these skin cancers, but as I said, that’s more or less under control

I’ll be getting these stitches out next week, and finding out whether or not the offecnding lump was cancer … It’s gone anyway though, so if cancer, it isn’t a problem anymore.

So that’s my MS life at the moment – Do my best to be my best, and loving the life I’m currently having, apart from those yucky spider leg stitches on my hand! I’m keeping out of the sun a lot more these days, but there was so much damage done out in the sunshine as a kid, all those fun and free, sunshiney days …

A Response to a Challenge

I left a comment on a friend’s blog post and he wondered whether anyone had ever written an ode to a their Cleaner. I thought about it briefly, because I love to rise to writing challenges. But writing an ode didn’t appeal, and I immediately decided I was going to write an ‘Acrostic Poem’ to my Cleaner.

Photo by cottonbro on Pexels.com

And so once I had some time, earlier today, that is what I’ve done, written about it, including an Acrostic poem today to Debra, who is my cleaner. I haven’t known her for very long, but it feels like we’ve known each other for ages, in good ways!

This is the poem I wrote, and some more details:

An Acrostic Poem to Debra, my wonderful Cleaner. I have written this poem in response to a comment from John Malone on his blog, suggesting I, or someone, write an ode to their cleaner. And as I wrote first up, I can’t resist a writing challenge! But I’m more interested in more Short and Sharp poems, rather than odes, which can be quite long, I think, and so have gone with An Acrostic Poem. Acrositic Poems can be quite short.

Here is my Acrostic Poem, Debra:

DEBRA

Dust disappears, and dirt dissolves

Everywhere she’s been, order reigns –

Beautiful person, I’m loving her here,

Relaxed that she fits in so easily & well,

And thrilled my cleaner is now a friend!

In the piece that John wrote, he talks of how he spends ages making things clean before his cleaner comes, and I have to admit, I do the same thing. Other people on his blog post confessed to doing the same thing too. Even though I know Debra is going to clean things up better than I ever will, I still do a little bit of tidying up …

Some Private Things

When you have Multiple Sclerosis (MS), you are likely to have tingly and or numb hands, feet or other places. You may have ‘food drop’, or fall over far more other than other people without MS do. Or you might have muscle weakness, and drop things a lot, or even be unable to walk. You have have problems with your eyesight, showing at its worst as blindness. These are all troubling symptoms and if you have them I am sorry for you, it sure isn’t a good thing. I’ve had or still have some of these things.

But all of these things will bring you sympathy from most people except horrid people who don’t care about anyone else. I hope I don’t have such people here, reading my blog posts. Anyway, back to the theme for this blog post … The things listed may well bring sympathetic responses, and that is a good thing. But the trouble with MS is that there are other symptoms too, that certainly won’t bring such sympathetic responses from the average person, not unless they are particularly understanding people or have experience with the some symptom. They may instead bring disgust.

And if you haven’t guessed it yet, that particular symptom is ‘continence issues’. Really though, continence isn’t a problem, it’s actually INcontinence that is the problem. Continence is: ‘the ability to control movements of the bowels and bladder.’ So yay to everyone with that ability, no problem there. The actual problems come with Incontinence, when that wonderful control to corral those movements to do their thing if and when you want them to get a move on, is absent.

When those naughty contents just up and move away from the bladder and or bowels, and head on out of the body when and if they darn well want to, that’s incontinence. So yay to you, if you have that incontinence thing happening, you have my utmost sympathy, even in your most unlovely of moments. I am on your side, I know how it feels. 

Bladder and bowels are great when they work properly, processing the heck out of food and drinks, taking out the good stuff for your body to do all of the good things it does, to keep you going. And then after, hanging onto the waste for removal at the proper time, and in the proper place, Yay body, thanks, great work. But sometimes, oh sometimes, the call of your bladder and or bowels may not be heard by your brain, and things may get a move on with no control at all, that waste just decides to rampage outa there and whoosh, off it heads, and the waste goes where waste is certainly not supposed to go!

If you’ve been there, you know what? I’m there with you, and I know how it feels. Dignity is the thing us disabled people want to hold onto, and respect too. But it’s hard to hold onto your dignity, and to get respect, when you’ve just pooped and/or pissed your pants. But you know what else? If it’s happened to you, and you’re still there, going out, risking further ‘incidents’, good on you, you have the dignity of a person who will take a chance, and do something, instead of hide away, coward-like. And you have my respect, because I know how hard it is to get clean and tidy after such an event. The world is not set up to help you with that one, unless you make the first moves to get things happening in that regard. 

Continence aids, pads, pants, catheters, are available, if you know what you need, and where to get them. I know the MS Society in South Australia and the NT have a special nurse who is there to help people with their problems with incontinence. The nurse is called a continence nurse rather than an incontinence nurse, I suppose because her tole is to help clients to be continent rather that INcontinent. It makes sense, looking at it like that. And in Australia, there are various government things, to assist with the costs.

Anyway, to finish things off, and lighten the mood a little, I am a poet, as well as a blogger and writer, so here is a little poem of mine I wrote a while back. I hope you like it! And if you are in a group that would love to have me come and talk to people about this kind of thing, contact me, I’d love to be there with you. Just tell me where the toilets are when I arrive!




On ‘Going’ …

You’d better go, before you go,

‘Cos if you don’t, well you know

You might be left with penny unspent

& it’s too late, if you already went!

NDIS Plan Changes …

So today my Support worker and I looked at my current plan, and the things I actually need right now. Some of the things from my previous plan were short term plan things, and/or are no longer needed. So there will be a new plan created for me to approve or change, and then have submitted.

My new plan, if approved will lead to more relevant things happening, more things that will help me be the vibrant/ connected person I want to be! Dealing with this awful current Covid situation has slowed, or stopped some things, but many other things can still happen.

Having my support worker there, working through these things is awesome, and I am more than happy to have her there helping me. She understands how to wade through the forms required, because she’s been dealing with the NDIS for a lot longer than I have, in a variety of ways.

I very much endorse the idea of having such a person on your team of supporters, if you have the NDIS, or wish to look at the possibility of going onto the NDIS. There is necessary monetary assistance to people with disabilities, but you have to know how to get it … The website – https://www.ndis.gov.au/ has lots of information, but if you are looking to, or are involved in it, having a helper who understands it is great!

For non-Australians information, the NDIS is the National Government program to assist people with disabilities live as ‘normal’ or good a life as possible. It is a fine thing, if you know how to work your way through the website, or have people with you who do.

Things Are On Track

So, it’s a new year, things are starting up again, and my NDIS things are about to get a bit of a shake up. I’ve been toddling along, happy to have a cleaner and a support worker who both come here every fortnight, it they can. I’m happy with their work, and the system for paying them, and getting the money from the NDIS is working well.

But this year, the year 2021 I’m looking for bigger and better things from the NDIS. I have ideas and am looking to making plans for those things. What I want most in my life, that is impacted by my chronic illness, is finally going to come to the forefront of things for me, if the plans that are beginning to come into fruition.

I feel good about this plan, and I hope, with my support workers assistance, it can happen for me. The horror year of 2020 is over, 2021 is here, and good things are on their way. If this all happens, all the good things that can come from the NDIS, will happen.

So I’m on track with the NDIS, things are going well, and about to get even better, by the looks of it. My situation shows how much better things can go, if your have good support workers, working with you, and understanding more about who you are, and what you want and need, for your best possible life!

And isn’t that what the NDIS is about, giving people with disabilities their best possible life?

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!

Awesomeness, with a Small Serving of Guilt

I have known about having Multiple Sclerosis (MS), since it was diagnosed in 2010. When I received that diagnosis, I was frail, and needed a walking stick to walk. I fell over often, and was burdened with almost overwhelming fatigue, the kind of fatigue that you don’t get over, just by sitting down for a little while, it is a deep, in your bones fatigue, and if you’ve never had it, you may not understand how bad it is.

But that relapse is over, and the one I had later one, is over, and now all I have is a better understanding of myself, and my MS, and feelings of being a survivor, and thriver, which is a great feeling, but also feelings of guilt, which a horrid feeling. Why am I doing so well with MS, when many others have it in ways that prevent them from living a reasonable life, unable to walk, or look after themselves?

There are many reasons for this, but those reasons can’t completely negate my feelings of guilt. Don’t get me wrong, my feelings of being awesome outweigh the guilt, almost all of the time. I have great family and friends, I live a good, no, mostly fantastic life, and I’m able to do the things I want to do.

Of course, being a writer means MS is no real hindrance to my writing life, in terms of actually writing. And for the other things that will be happening soon – doing talks and workshops, marketing and selling my books, well, I now have a support worker who is excited to be helping me with these things, carrying books, making appointments, and so on. My support worker thinks I’m awesome about this, and I think she is awesome to be helping me – we make an awesome team, for sure.

So an abundance of awesomeness there for sure. But still those twinges of guilt that make me feel gratitude that I am doing as well as I am. My MS medication is helping (with only one troublesome side effect), my medical people are helping too. I am working to attain the level of Stoicism I wish to achieve, managing an almost completely stress-free life, and yes, life is as good as it feel it can be, almost.

Once I am more practised with the Public Speaking gig vibe of my life, working at it more, and getting known for being a worthy, even inspirational speaker, wow, that will be the life I truly want. I am settled in my life, having enough and then a little more, or all I need, and that is a wonderful thing to be able to say.

The guilt I feel is not a bad thing, it is what helps me to maintain a bit of humility, so my awesomeness is an inspiring light for others, not blinding light!

Chore or Exercise?

Sometimes for people who have disabilities, just getting up in the morning can be a chore. Then, when you add, feeding yourself, getting clean and ‘nice’ and further, if you need to go out, putting in an extra effort to look presentable to the public, whoa just typing the words makes me tired!

My keyboard and hand. Hmm. I must get that ring out and wear it again!

But if you wish to become more able to do things, when you have Multiple Sclerosis, the buzz phrase is ‘Use It Or You’ll Lose It’, and so these days, people are encouraged to do exercise to help themselves remain mobile, if they are actually mobile, and to exercise while seated if mobility is a problem for them, as it is for many with MS.

Not all people with MS have such mobility problems, particularly these days, with better understanding, and better medications and other treatments. I am one of the more mobile people with MS, on a good day (ie, not to hot, and if I am not feeling stressed), I can walk easily up to 500 metres.

I certainly am glad about that, I like being able to get around easily in my community! So I’ve been doing more exercise, these days, simple things, that I can do at home, with minimal equipment. Walking. That is such a basic thing, many people don’t think of it as being exercise, but it is.

My main exercise thing is indeed that, walking. I’ve been making a point, a few times in a week, of walking extra steps at home, brisk steps, and counting those steps. I know that two of my brisk steps equal on metre, therefore, if I walk 500 brisk steps, I have walked 250 metres. This is in addition to any usual walking I do to walk around the house and outside, doing the ordinary everyday things we all do. The brisk steps are extra ones, they are exercise.

So I do these steps both inside the house, walking briskly from room to room, into and out of rooms, counting the steps as I go, and outside of the house. Outside, I might walk up and down the back or front veranda. Or I may walk around our swimming pool (50 steps, I’ve counted!). I feel good about having begun this plan, and while I know it would be good if I did it every day, I also know that just isn’t going to happen. Life gets in the way.

Our swimming pool

Another exercise I just thought about today, is How about thinking about household chores as exercises?! Haha, I hate housework, and am very glad that my husband does most of it, as my carer. But today, I had to, no actually, I chose to, do the washing, and hung it out. But I told myself I was going to do some bending and stretching exercise outside in the sunshine, and that way, hanging out the washing felt like a good thing to do, not a chore!

And later on today, I’ll do some more stretching, when I go out to the clothesline to bring in the washing, and some weights to carry it inside. After that, there will be some bending, to get the washing out of the basket, and stretching, to put away it all away in drawers and the wardrobe!

Hooray to exercising, and hooray to me for thinking of this cunning plan, to rename things, and find enjoyment and that needed movement! I’m definitely moving it, because I sure don’t want to lose it – mobility is my friend! If you stop thinking about parts of your life being a chore, your whole life can feel better!