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!

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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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Photo by rawpixel.com on Pexels.com

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!

Invisible Illness

When you have a chronic illness, such as Multiple Sclerosis, it can become almost irritating, having to deal with people who fail to realise that you aren’t faking, and you really do have an illness that is limiting your life. There are tests, that are done to see the damage that has occurred inside your body, the scarring on your central nervous system that is stopping nerve signals from travelling freely through your nerves.

This can cause a variety of different consequences, depending on where the scarring (or lesions) are. It may cause problems with eyes, weakness in muscles, numbness in hands, feet, knees, lower legs, speech problems, problems swallowing, and a variety of other problems. Memory, and other problems relating to cognition (thinking) can also occur.

These problems won’t always be there, some days a person with MS may feel alright, others they may feel very much affected. It may depend on the heat, or on their level of stress, or all manner of other things. Most people with MS would agree about the heat, but there are some others who are affected by being too cold. But only the person themselves know how they are being affected.

Some people with MS may be able to work full time, others not, or not all of the time. Some people with MS can run, others are unable to walk at all, and there are many levels of mobility in between. Again, there is no telling who will be affected, and in what ways. It is thought diet can have good results for people, and certainly good healthy food is good for everyone, but eating well is not going to help everyone with MS.

OLYMPUS DIGITAL CAMERASome people may need a mobility aid to get around, a walking stick, or a wheelchair. Some may only need the aid in certain circumstances, such as when they are suffering with a relapse. There is no way to predict when a relapse may come, or when it will end again. MS is an unpredictable disease, never think you know how a person with MS feels at any time, they may be fine one day, and badly affected the next.

 

NDIS – & so it Begins

I applied for and was successful in getting an NDIS plan. We are self-managing the plan, and yesterday had a meeting with our local area co-ordinator, so we all know what we have to do next.

I made some phone calls yesterday, and have got the first thing happening, which is good. Talking to someone who understands the whole NDIS thing, with the relevant forms to fill in and so on works much better that blindly trying to get things happening, without knowing if they’re things that will be paid for …

There is money there, and while I may not be able to get what I was hoping for, there will be other things available that I hadn’t realised could be paid for. This is a good thing, having money from the government is what we all pay taxes for, and we all deserve to get what we are allowed, when we need it.

I am thinking about the possiblities, while waiting to receive back more information, and in the meantime, I’m enjoying myself, doing one of my favourite things – writing poetry. I have joined up of a thing called #poemadayfeb, where interested poets write a new poem every day in February.

The people who have organised this, did it last year too, and I thank them for their work. They have written a list of poem prompts, one for every day of February, and then two extra ones, just in case. So every day, at some stage of the day, I check out what the ‘prompt’ is for this. Then I settle down and write my new poem.

The poems I’ve done so far have been interesting … A variety of poetic styles, & subjects, with some themes re-emerging as I’ve gone on, climate change is there more that once, family too, and some quite personal things.

I am letting at all come out onto the page, and then editing to make it beautiful, honest, authentic … Then I am putting them onto my Writers blog here
I plan to put all of these poems into a little chap book, to sell to my adoring fans (both of them), for a teeny, tiny price! Haha, the life of a poet is not that of a wealthy person, that’s for sure. Not wealthy in monetary terms anyway, but is experieces and understanding, very rich.

I am living a good life, with many positive things happening. I think the most important thing about me and my life is that I am Chronically Positive!

Things to be Proud Of

Having things to be proud of is great in life. Whether the ‘things’ are actions you’ve taken, or races you’ve run, or anything really, it’s great, and makes you feel good.

Pride is one of the ‘7 Deadly Sins’ but the pride I’m talking about, is the good way you feel when you’ve done something good, and especially if others have seen that good thing, and are proud of you for it too. That is certainly not a sinful thing.

Gaining the approval of others is not the only reason, should never be the only reason to do good things. Being proud of yourself is enough, and you should always acknowledge to yourself, the good things you do.

When you are troubled by illness, or with any kind of disability, it is still important to have things to be proud of yourself for doing, or being. If you are badly affected, sometimes it’s the simple things in life that will stand in, as things to be proud of.

I remember somedays, if times with my MS have been troublesome, I will tell myself I’m proud just because I made it to the toilet without wetting my pants!

But I am able to do so much more than that, and at the moment I am extremely proud of myself for the writerly things I’m doing. At the start of the year, on News Years Eve, I decided that I wasn’t going to do the New Years resolutions, but instead, that I would have a GREAT YEAR for all of 2019, and I would do the best I could do.

So far, I’d say I’m living up to this. I am working on a novel I wrote the first draft of, ten or soyears ago, and then put it away, with only a some minor editing. I found that draft novel the other day, and I’m now doing a second edit of the story, and I hope to try to get it published this year. If I can do that, I’ll certainly be very proud of myself!

Having MS may limit me in some physical ways at times, but my brain works, and I love writing! This novel isn’t perfect, not yet, I need to write many more words to get it to the required ‘word count’. It’s a novel, so I need a word count of at least 75,000 words, I currently have only about 52,000 words.

I know I can get it to the required length, because, I am good at writing, and I know what I need to do! I will work on the characters, tighten the plot, add in a much better ending than it currently has, and I’ll get it to the correct length! I’m good at poetry, too, and for this month, February, I have been writing a new poem every day, using a writing prompt that writing friends have put together for this purpose.

I’m very pleased with the poems I’ve written so far, and look forward to a new poem every new day, to be proud of! I am putting my new poems on my ‘Writer’ Blog here: https://carolyncordonwriter.wordpress.com/blog/

I’ve also been posting links to those poems on on that blog to my Twitter account, and I’ve seen a rise in my numbers for hits on that blog! I’m definitely proud of myself for that!