Another Good Day

I don’t know why I have the good life I have. I look at what I’ve had in my past, and can see times could easily have gone bad for me … My health has been OK for all of my life, really, up until things turned around, from OK to potentially bad.

In 2010, I had a collapse of sorts, feelings of weakness, and a fall, as well as mobility problems, walking, tripping and almost falling, and then actually falling. I was fortunate that my family was there on that first day, and I was able to get the medical help needed.

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It’s been a learning curve though, learning to live a good life with MS. Medication, getting over a fear of needles, learning to care for myself, what things I could do, and what I would have to cut back on, or cut out, at times … Much learning from considering the truth of my situation.

I have a good life, no a great life, actually. Good family and friends doing great things, positive things, outstanding things even, at times, working with my own abilities, and with others helping out too. The world is made up of good, bad, and indifferent things. I look to the good things, and work toward removing the bad, as and if I can. Indifferent things are what I am learning to ignore, if they have nothing to do with me.

Stoicism has come into my life, and I am realising that many things that happen don’t actually have anything to do with me, and if I leave them for those who are actually involved in them, not me. Why bring on other people’s problems if it’s not your business?

And in my thoughts about Stoicism, I am realising my natural attitude to life is a rather stoic attitude anyway, before I even truly knew what it was, and where the term came from. Things happen, I deal with them in the best way I can, a way that is good for me, and further, good for others if they are involved too.

Making the world a good place is surely a fine thing to do, and if I can play a part in doing that, woohoo! Having a role in life that takes me above and beyond my chronic illness, so that I don’t dwell on any of the worse parts of my life, but instead thing on and act on the better parts of my life, these things are good for me. They’re probably good for everyone, actually.20190708_142457

If you have a chronic illness, it is only a part of what and who you are, not the whole thing. I realise other people with Multiple Sclerosis are facing a much tougher life than I am, but I’m still of the opinion that thinking only about the bad stuff in life is never going to bring you a better life. Deal with the bad stuff, embrace the good stuff, live, learn, survive, and THRIVE!

 

If any of this sounds like a good idea to you, leave a comment, I’d love to hear from you! And take a look at my other blog, the Stoic one My Stoic Life, who knows, it may strike some chords with you, the way the ideas did and do with me!

 

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Doing MS Meds Differently

It always surprises me when I read other people (usually from countries other my own, which is Australia), don’t understand that there is a protocol regarding the MS medication Gilenya, regarding how long you can go without taking it, before you have to go through the initial process again.

That process isn’t an onerous one, but it takes most of a day, from beginning to end, with regular checks on the heart rate regularly over the 6 hour process. I don’t think you need to go through the eye checks the second time, before being allowed to begin taking it again.

Whether you do or not, I would certainly not consider stopping taking Gilenya, not unless there was an extremely bad effect from it.

The Strange Things I Know About

Call Me the Poo and Pee expert!

I had a session today, with one of the people at the MS Society, in their new venue. Because I’d never been there before, I left in plenty of time, and found the place easily, so was early. My phone ‘told me where to go’, politely of course!

Because I was there early, I was able to have a cup of coffee and an apple. They were both free, which is always nice, when you’re living on the Disability Support Pension! The apple was there in a delicious looking fruit bowl, to help to promote Bowel Cancer Awareness Month, and because I was at the MS Society to discuss continence issues, it was completely pertinent.

Continence, or more correctly perhaps, incontinence, can apply to both the bladder and the bowel, and it means when, what I’m going to call pee and poo, arrive too fast, when we don’t want it to, then the resulting unpleasantness can occur.

And of course, we all know just how unpleasant poo and pee can be, when you’re not actually sitting on the toilet seat, (or squatting outside in the bush). And unfortunately, it seems to be true that people with MS are more likely that other people to suffer from these embarrassing issues.

Getting help

The reason I was at the MS Society, was to look into the best options available to assist with dealing with any potential messy problem. Incontinence isn’t a really big issue for me, but it is a sometimes problem, for sure. If I can get a pad/liner to help me, I want to get the one that suits me the best.

I have been approved for financial assistance from the NDIS, and I am glad that I am able to be reimbursed for my money spent to keep things nice! The MS Society worker is looking into method of payment for continence support items for me, and will get back regarding it.

And I wanted to discuss the whole incontinence thing. From how the discussion went, I’m doing the right things, to assist my own body with these things. I drink plenty of water, and have a good amount of  fibre in my diet. The correct amount of water is 30ml for every kg of body weight.

How Much Water is the Right Amount?

So my weight is around 56 kg, so I should have around one and a half glasses (250ml) of water. This amount of fluid can include two cups of coffee in a day, but after that, the caffeine causes excessive urination. So it looks like my current amount of water/fluid taken every day is about right.

I usually have 2 or 3 cups of coffee every day, with about 4 or 5 glasses of water. Another way to check on whether intake of water is sufficient, is too check the colour of your urine. It shouldn’t be the colour of cider, or apple juice it should be a lighter and clearer straw colour. So, if you want to check your situation, just take look, before you flush!

Drinking enough water can assist with preventing Urinary Tract Infections too, and that is not a pleasant thing to suffer from at all. Since I began drinking more water over the past couple of years, I haven’t suffered with one of those nasty infections, and I am very glad of that.

In summer, especially if you spend time out in the heat, your sweat will take away some of your water intake, so you must remember to drink more water. Also if you are working out, running, or being active working in the garden, the yard, and so on, then you must keep up your water intake.

There are many kinds of drinks for sale to ‘keep you hydrated’, but simple tap water is the cheapest method, so really, you don’t need any fancy drinks, just water. If you want water with a bit of kick, try a squeeze or squirt of lime of lemon juice, delicious!

Feeling Fine, with MS

A friend posted a comment on my Facebook page recently, mentioning that I seemed a lot better now than when she met me years ago at a particular event. I’m not sure exactly when that event was, but I suspect it was probably in the early 2010s.

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I’m certainly better than I would have been back then, physically. I was just diagnosed with MS, getting used to injecting myself once a week (ouch!), and wondering what on earth was I going to be doing with my life. Emotionally, spiritually even too, I’m am going much these days.

There’s a common little phrase used by some people who have Multiple Sclerosis = I have MS, but MS doesn’t have me. I certainly agree with this idea, in my own case. Yes, I have that chronic illness, but I also have so many much more uplifting and heartwarming things in my life.

I have wonderful caring family and friends, I have a sense of purpose in my life, I have a lovely community I work for. All of these things keep my heart warm and beating strongly. And I have my creative writing, this blog (and others), my books, poetry, works in progress, and the newsletter I edit, the Mallala Crossroad Chronicle.

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These things are there, they are going along well, and I am in such a good space in life. With the medication I am on for MS working well, sometimes I can almost forget I even have MS, and that is a good thing for sure.

And as I live in the country, Nature is always there with me, trees, birds, other creatures, and the sky with clouds, I love them all, and I feel they love me too!

How A Stoic Life Helps

I have just realised that I have actually had a somewhat stoic attitude to life, before I understood what that actually meant. The name of the book I wrote not that long after I was diagnosed with MS, and that gives this Blog its name, in full is – “Mick, Jane and Me, Living Well with MS”.

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Those words, Living Well with MS, give clues as to how I was trying to not just manage my new and changed life now that I had this somewhat limiting chronic illness. I wanted to live well, in as many different ways of wellness as I could manage. My health was certainly one of the wellness concerns, but there were other ways of wellness, feeling useful still, for instance.

I feel that the book I wrote, which is both a memoir of my new life, and a bit of a handbook for other people who have MS, and those around them who want to know how it can be to manage living with it.  This book is the one I wanted to read when I first got my diagnosis, but couldn’t find such a book, there were only medical books written by medical people, not people like me.

Writing helped me, it was one thing that I was still able to do, and do well, when some other things were nowhere near as easy to do. I went forward with my new life, thinking on things that would help me, setting up a peer support group in Gawler, and working as a volunteer, student, for a short time at the MS Society in South Australia, to finish my TAFE qualification (Certificate Four in Community Service Work).

Doing these things that were more focused on others, rather than myself, helped me to look for and find ways that would help both me and others in the same circumstances. I was not looking for praise, I was simply looking to do the best thing I could, the most ‘virtuous’ thing, in the Stoic way.

My previous understanding of what the word ‘stoic’ was, was something steadfast, and not anything ‘fancy’, but was instead plain, no frills, and uncomplaining. I didn’t know until quite recently where the word “Stoic” came from. I’ve been looking into philosophy a lot lately though, and have found out much more about the Stoics, who lived in Greece over two thousand years ago.

I like what I am learning, and am certainly thrilled with the book I received on my recent birthday – “How to be a Stoic Ancient Wisdom for Modern Living”, written by Massimo Pigliucci. This book is teaching me all I need to know about how to live a Stoic life, and I’m happy to see that my way of life seems to be heading in that direction naturally, so it is simple to continue following is this same good and stoic path!

Finding ways to live a virtuous life, a life where doing the good thing is my first choice, and only choice, if I can manage that, this is what it is all about. By ‘a good life’ I don’t mean chocolate and fine dining, I mean good as in kind, helpful, and so on – the greater good, not a personal good for me only.

Stoicism looks to virtues, and to living in keeping with those virtues. Having a mindful life is in keeping with Stoicism, and I am grateful to the MS Society, for the training they have had in Mindfulness, where I learned much about this. The two things, Stoicism and Mindfulness are very much in keeping with each other.

Making Mindful choices, so that options that won’t lead to good results, is very much a Stoic thing. Caring about and for others, feeling a commitment to self, family, friends, close community, greater community, and to the whole world, these are all things a Stoic believes in, and does their best to do, always, in every thing in their lives. This is certainly in keeping with how I try to live, and I will keep on fulfilling these aims for the rest of my life.

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Having this framework feels like I am able to do good in the world, and am helping to make life better for others, as well as my own self ideals. Living Well with MS isn’t really that difficult for me, and I am glad of that for sure. I have help from medication, from family and friends, from the MS Society, from my own actions regarding what I eat and what I do.

If you have thoughts about my words here, please feel free to leave a comment, and begin a discussion perhaps!

Some Action Beginning NDIS

I now have the MS Society SA & NT getting involved in my NDIS plan and I’m expecting things will soon get going, finally. I have a plan, the MSSSA&NT have a copy of the plan, and an occupational therapist from there will be contacting me soon. I am beginning to believe it will actually happen, now.

The difference in the whole thing, once you finally have an organisation that you know and trust is immense. I’d been feeling a little bit negative about this whole thing, even though I have the money there if and when I need it. I just felt that I may never actually get my head around the whole thing, and may just end up wasting my time, and that money.

Now though, the MS people are on board with me, they know what they are doing, and I am confident money will be spent, and spent well. The OT will come to my home, see what I have here, and what I need. They will have other ideas on how to get the things outlined in my NDIS plan, and they know how to word things so they meet the requirements.

Even though we opted for a self-managed way to go, this partly assisted way seems like it’s a way that will work for us. I am now satisfied that it will go well. And it’s a burden off my shoulders that I hadn’t realised was even there, really.

So that is organised, what else is there in my MS journey? I’m going to have my flu vaccination before the end of the month – my GP knows I want my shot, and the doctors clinic are expecting to have the vaccination in a week or so, and I will be there very soon, when it all gets going.

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I have had my appointment with my podiatrist today, and my feet are feeling good. My skin that was zapped with liquid nitrogen by my GP is going well – the scabs dried up and have almost all now fallen off. The main thing regarding my MS health is doing some more exercise. I know that, and it is up to me to get going with it. I have plans to get back into the Wii Fit exercises again, but at the moment, I’m in birthday feasting mode!

Next week though, that’s when I will be getting the Wii Fit going, regularly, every day would be good. I know that. When I am being more active, it becomes increasingly easy to be active, it’s a win/win thing, and I love them. I also love inactivity though, haha! The machine will be switched on, maybe as soon as Saturday.

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This week has been my birthday week. I am now 56 years old, going quite well, in regards to my health, but there are around two to three kilograms I’d love to say goodbye to, and there are some muscles I’d like to wake up, and get them going! I have hand weights, I have possible exercises I can do, I have the Wii Fit machine – I will get going with all of that!

imag0402If you don’t see me reporting back on how that is all going, within a week, please, please ask me about it. I think potentially guilting myself about it may be the kick in the bottom I need, Haha!

Trips, Falls with Multiple Sclerosis

People with MS are more likely than people who don’t have MS to have relatively frequent falls. Not all people with MS, but more than others.

I certainly fall more that other people of the same age, who don’t have MS or similar condition. When I am being ‘good’ and exercising often, I build up my strength and my sense of where I am, my spatial awareness, and while I may have near falls, I have fewer actual falls.

Keeping moving around, doing some housework kinds of things, or simply walking, these things can be useful, and I try to do at least some things that involve getting up and moving around. Today, I helped out with the washing, and had more reminders that trips and falls are always possibilities for me.

I certainly didn’t fall, but had a couple of near trips that could have been nasty if I’d actually fallen. I didn’t though, and I’m glad. I’m also glad these thoughts have led to a new poem, about the subject.

 

TRICKS & TRIPS

Housework, reasons to move around

Good times, getting jobs all done

But the going outside is bumpy not smooth

 

Bending & stretching are good that’s true –

getting clothes washed, hung out & dried,

then brought back in then put away,

 

The risk of falls though is ever-present

Three near falls today, not actual ones

But near, it’s the wake up call I need.

 

These reminders ensure I step carefully –

An almost fall, that’s better than another

Meeting with hardness of the ground!

 

So three near falls, and zero actual ones

They’re the stats I like to have, it’s the way

I like it, I can laugh at gravity’s harsh tricks!