philosophy, Uncategorized

Sunshine – Blessed Happiness

Today I did something I rarely do, I exposed most of my upper body to the sun! I kept my under clothes on, and my track pants, but I exposed some flesh to the lovely and blessed sunshine.

This unusual event occurred in the backyard, which is pretty private anyway, so if anybody copped a view of a little more than they were expecting, then they probably got more than they deserved! I was out there with husband and our dog Missy, while washing was being hung up, and then our Canna plants watered.

I looked at the mandarin tree while I was outside, and it certainly looked like it needs the watering it’s getting right now. We are forecast to have some much hotter weather in the next few days, and we need to make sure these plants get what they need. Sunshine is certainly needed by plants for the photosynthesizing process, but correct watering is important too, very important.

Humans need proper hydration (water) too. At the moment, I’m working on my second glass of water for the day, and I’ve had a cup of coffee first up, as I almost always do. That coffee counts toward my needed water intake, up to a point. I feel that if I have three cups of coffee, and about three glasses of water, that is probably enough for my needs.

Other people may have other needs. I did around twenty minutes of aerobic exercises today, with the family Wii Fit machine. I didn’t work hard enough to build up a big sweat, so it isn’t like a runner, who will lose much water through sweating. One day I may be fit enough to actually go jogging outside, but that moment is certainly not now. I get tired, just doing my two minutes of jogging on the spot inside with the Wii Fit machine …

Rome wasn’t built in one day, as they say, and my aerobic fitness is a work in progress. Getting sufficient sunshine is a work in progress too. I am slowly reducing my layers of clothing, after the cold of Winter and early Spring. I like to be warm, rather than being cool, other people prefer it the other way around.

I have MS (Multiple Sclerosis), and it is felt by the experts that vitamin d, at least the lack of it, may have a negative role in my disease. Having adequate vitamin d is felt to be healthful. So, if I want to be as healthy as possible, it is a good idea to receive vitamin d from the sunshine, whenever I can.

It’s a balancing game, this one though. I have also had skin cancers (in the early stages) removed. Sunshine brings both skin cancer and vitamin d, one bad thing, but one good thing too. So, I know that getting my sunshine for vitamin d in the morning and later afternoon is the best way to go. In the middle of the day, the sun is at its most dangerous level for skin cancer. I think I have the knowledge to make this work best for me.

On another level of being, sunshine simply makes me happy. I love what it does for the plants, the vegetables, the lawn, the trees, and the flowers. I feel so fortunate to have enough room, at my place to have all of these things, at our place in the country, with no tall buildings cutting out any of that blessed sunshine.

And of course, we have solar panels on our roof, and every moment of sunshine brings us more power for ‘free’. We’ve had our panels now for long enough to have covered the costs of their installation, so it is free actually, no need for the quote marks. Sunshine’s power helps to pay for some of the power we use, and I love that idea. I also love the fact that every bit of solar power we use is other, more worrying forms of power we don’t have to use.

This is good for everyone and everything sure, people, Nature, the planet. I know there are other things I could do that I don’t currently do, but at least I’m doing something …

 

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birds in garden, dogs

Glorious Days of Different Kinds

Yesterday was a glorious day of sunshine, blue sky and fluffy clouds. There was a gentle breeze outside, the birds were merrily cheeping and chirping in their various ways, the dogs happily went from lounging around on their sofa, to happily running around outside. It was a lovely warm day, and all was pleasant both inside and outside our home. Today is also quite a pleasant day, but it’s another kind of pleasant. I have no signs of a blue sky,

aleppo pine

 

the sky is white and grey with clouds. There is a tiny amount of rain that may or may not fall. The birds don’t seem as chirpy as they were yesterday, and the wind is cold, and a little less pleasant because of the temperature of it. The dogs are still happily lounging around on their sofa. The dogs are almost always happy to do that, and who can blame them?!

pelargonium

 

My point with this blog post is to encourage myself, and others to look at our lives, and to find glory, or at least pleasant times, in a variety of situations. I’ve been thinking about my own health, after seeing my specialist yesterday, and I am convinced having many thoughts about the things that please me in life has played a part in why my chronic illness isn’t troubling me as it can trouble others (and has troubled me in the past). I am in the remission phase, and haven’t had a full-on relapse for quite some time now, I have only had what is called pseudoexacerbation. This is where previous MS Symptoms can occur again for only a short period of time. This is most commonly caused by getting too hot.

The symptoms go away again when you are able to cool down again. I’ve had this occur in a truly worrying way only once. On that occasion I was driving my car home, was feeling rushed, and got far too hot. When I got out of my car and walked around to the passenger side, I collapsed when I opened the door, and couldn’t get up again, my muscles wouldn’t work. It was a big worry, but I was in the shade from my car, on the grass, and I knew my son would be home from school eventually to help me.

I don’t know how long it took for his bus to drop him off from school, but it did eventually arrive, and he was able to get a neighbour to help and they were able to get me inside. After being in the air conditioned house, and with some cool water to drink, I was able to regain control of my body …

Anyway, that happened quite a few years ago – six years, possibly, and hasn’t been that bad again since. I am much more careful about these things now, having found out how bad it can be If I don’t look after myself. So sitting in a stinking hot car, with no cool air is a bad thing for me and for many other people with MS, or without MS, really … My favourite sitting around places outside are on my front or my back veranda, and I only sit there if I’m in the shade, or if I’m not in the shade, then when it’s a mild day with a cool breeze.

galahs drinking

Glorious days outside with the dogs, the trees, the clouds, the birds, oh what a marvel those lovely times can be! If you have places where you can rest and take in the glories of Nature, please leave a comment and tell us about it!

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dogs

Lunch Today

When I am at home, I rarely eat dessert. We rarely eat dessert, except for the menfolk having some icecream as needed on hotter days, and sometimes after our evening meal we may have a small amount of chocolate, for health reasons only, of course. But perhaps because of this ‘no dessert’ thing of mine, I have to admit that I often launch out and order dessert when I dine out. My weight is well within the ‘ideal range’ for my height, and I am not a big eater, and that’s how I keep my weight that way.

I was at an event in Gawler today, a launch of a lovely new calendar featuring beautiful and tasteful photos of lovely ladies who have MS, and who weren’t wearing many clothes. All very nice, and no salacious pics, but a bit of naughty fun! Calendars can be obtained from here, if anyone is interested.

Anyway, after the fun of getting myself a calendar, and having it signed by the photographed ladies who were present, I decided I deserved some lunch. I know fruit and nuts are important, so I checked out the menu and ordered a serve of black forest cake. It came with (glace) cherries, sliced thin almonds and two small strawberries. I ate it all up, and enjoyed it very much!

I suspect it might be a good idea to actually jump on the scales again soon – I don’t want to end up overweight again, and if I keep up with this dining out and ordering dessert lifestyle (with little exercise), the overweight might creep up on me!

Having four dogs in the house, and being the only human in the house at the moment, might well result in me having to venture outside soon, and so some walking around and picking up and disposing of duties. Not my favourite canine chore, but dog owners must be pooper scoopers too, at times … Judging by the odour in the room, that task might be needed soonish. Phew! Smelly farts, or is that a precursor?

I’d better get out in the garden with the dogs!

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Uncategorized

Sharing Stories

I was at the Australia Day celebrations at the Mallala oval this morning, talking to many different people and enjoying the lovely sunshine. One of the people I spoke to was a friend I haven’t chatted with for some time, I’ll call him M.

M was recently diagnosed with having MS. This was after over thirty years since having any major symptoms that could have been put down to MS. M was tested for MS with both lumbar puncture and MRI, and his neuro at the time said it wasn’t MS. But last year, another major episode led to another neuro, after another MRI, declaring it was in fact MS and would have been back then, the first time.

We chatted further and M told me he’s now on Tysabri, and not enjoying it/not thinking it’s doing him any good. His symptoms are getting worse, and he’s concerned about the risks with jvc inherent when you are using this method of treating MS. I mentioned the need to do what feels right for you, and wished him well.

It seems that these drug treatments certainly lead one to carefully considering how far one is prepared to possibly get better. My thoughts on this are that we all have to make up our own mind about what we’re prepared to do to help improve our health. I would never have thought I could give myself regular needle injections, but I could and did. 

Two years of weekly Avonex shots in my thigh. I’m proud of myself for being able to do it, but I’m so happy not to be having to still do that. The Gilenya medication, which is in capsule form is so much nicer to do, one capsule every morning, easy-peasy!

If something goes wrong with this method though, and I had to take something else, I wonder … Would I go back to Avonex, which worked OK (or seemed to anyway). Or would I look into the newer medications? At this stage, I haven’t really considered this, I’m just hoping I can go along as I am now, getting better, but still not symptom free. 

The ‘better’ is good enough for me, if I have to live the rest of my life as I am now, that’s not a bad thing. I can walk, talk, think and drive. My quality of life is good, slowed, but only a by little bit. I never wanted to run marathons anyway. 

I’m living my life how I want to, I’m living well with MS!

 

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multiple sclerosis

Best Thing About Having MS

There are a few really good things about having MS, you know. Getting a disabled parking permit, and a disability support pension are the obvious ones, of course, but there are quite a few other great things about having multiple sclerosis.

One of them, is having an excuse for practically everything:

Forgetting things? Yeah sorry, mild cognitive dysfunction.

Dropping things. Sorry, muscle weakness.

Falling over. Yeah damn muscle weakness again…

I could just go on blaming multiple sclerosis for everything that doesn’t go how I want it to, or anyone else wants it to. Tiredness, being dumb or clumsy, obviously that must be because of the multiple sclerosis. But I don’t want to be labelled as being too dysfunctional. I’m capable of doing things, quite a few things, and I’m actually proud of myself for some of my talents. In view of this, I try not to over-play that line.

Writing is certainly one of those talents I have. I can pen a mean poem if I want to! I’m good at writing about pretty well anything I set my mind to writing. I have a few published books to my name, and I still receive royalties for one of those books, many years after the book was first published.

And the book this blog is based on, “Mick, Jane and Me – Living Well With MS” – I’m quite proud of this book. I enjoyed writing it, hunting up all of the bits and pieces that went into publishing it. Being able to write, publish and market the book are talents not every person has. I did it though, and it’s quite a fine looking book. I had some great people to follow, and to get assistance from. I also had financial assistance to help get it  all done.

There was the Richard Llewellyn Arts and Disability Trust grant that gave me money to pay for my mentor to help me get my writing verse abilities spruced up and working well (or at least better than they had been). And of course the printer of the book, Centre Print, who are the printers for the MS Society SA & NT, who printed 100 copies of my book for me for free. That was a great help!

So because I have a disability, I was able to get a memoir about an important part of my life printed. This memoir has some quite profound stuff in it. Useful things about medications, some about exercise and its importance. And I found quite a bit of philosophical thinking that went into the book toward the end.

I really enjoyed these philosophical thoughts. It came from some quite deep pondering, and I wonder whether these thoughts would ever have come about to be written down if it hadn’t been that I was writing a memoir about my new life. So really, I think this may be the best thing about having MS.

Because my life has changed, had to change, I’ve given myself permission to think quite deeply about what I am capable of doing, what is important to me, what are the best things for me and for those I love and who love me. So this has meant the creation of a new writing group (Adelaide Plains Chapter & Verse) that meets weekly in Gawler at the Prince Albert Hotel (every Thursday afternoon). And I’m also involved in a group for people with disability that meets monthly at the SA Writers Centre.

Another thing I want to explore further is Public Speaking. I have things to say about disability, my own and the subject in general. I’ve had a bit of experience in public speaking, and I certainly want to take this further in the future. I look at life in quirky ways at times, and I’d like to perhaps get into a bit of comedy work. These things will get more work next year. I already have one booking for public speaking, with another possible one in the process of being planned. I’ve put the word out  about this, and hope to at least get some learning gigs in 2014, with a view to doing more in the future.

So, The Best Thing about having MS is the permission I feel I now have to put myself out there into the world, knowing I have a story that interests others. I’m pretty sure there was another thing I was going to write about, but you know what? I’ve forgotten what it was!

Ah, I know, the Very Very Best Thing about having MS is that I can now get away with laughing about peeing my pants!

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Uncategorized

Book Sale news

I’m pleased to be able to say my book sales are going well. I have about twenty copies of my book left, with some others out and about looking for new homes. I’ll be heading out and about myself beginning next week, talking to MS Peer Support groups, and selling more copies of my MS Memoir.

When you are a self-publisher, you need to become a self-promoter too. I’m a meek and humble poet, not given to grand gestures, or to bragging about my achievements. I am proud of my newest book, ‘Mick, Jane and Me – Living Well With MS’. I’m proud of what I’ve achieved, with this nice looking book, with a two great pictures of me on the front cover and another on the back cover, both photos by Martin Christmas. I love the feel of the book, and I completely adore the lovely illustrations done my Simon Kneebone.

I feel OK to say this book is a good one – the feedback I’ve received has been great. The book was self-published by me, yes, but the work of many others went into it too. My mentor Ray Tyndale helped me so much with the structure and the writing the narrative in prose. Without Ray’s work, I’d agree with the words of others, when they’ve mentioned the phrase ‘chopped up prose’. Certainly in the earliest versions of the manuscript, it resembled that…

But I listened to what Ray was trying to teach me, and I gradually got into the rhythm of the lines, and what I was writing became more poetic, more ‘verse-like’. This verse memoir has my ideas and thoughts about what living with MS is like for me, and it includes thoughts of some others too. I thank everyone who has given me their words, words that I share further with the readers of my book. Yesterday, I was able to give a freebie copy of my memoir to one of those lovely people who shared with me. It felt good to give something back to Shirl, after she had given to me, when I asked for thoughts about what could or should be in my memoir.

As I share my memoir, I share myself, and the many contacts I have, strengthen. This strengthening of contacts helps me to grow stronger, and my safety net expands, and expands. I know if I ever fall, there are many who would stop and help me up again, just as I know I would stop and help others. It’s all about community. I’m involved in the MS community, and I’m loving this community – the knowledge, the happiness at sharing, and the wonderful understanding from others who truly understand what it’s like to feel the way I feel, when I’m fatigued. If you don’t have MS, you won’t really understand …

When one is suffering from illness, you can sometimes feel alone. I know though, that I have many friends who suffer too, and we can all do our best to end the suffering. I’m living a good life, with my family and friends, and I thank them all…

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And after the book launch comes …

So, the book launch happened last Wednesday. People were there, family, friends and others, and the book was launched, after suitable words were spoken. Copies of the book were chosen by attendees and signed by the author. Tea, coffee and food were enjoyed. And then we all went home again…

What comes next? Well, what comes next is the selling of all of the rest of the copies of “Mick, Jane and Me – Living Well With MS”. Holding a book launch is all very well, but there are only so many copies you can sell there. I’m happy with my book sales on the day, but I still have plenty of copies of my book looking for new homes and new readers.

I had a coffee with a friend today at my local hotel. I showed her my book, and she bought a signed copy. I’d mentioned my book to the publican earlier, and he’d put in an order for a copy, which he received today. Tomorrow I have a meeting at the MS Society SA & NT, where I’m fairly sure I’ll sell more copies of my book. After that, I have a meeting next week, and then another the week after, where there will probably be eager book buyers.

I now have plenty of copies of my book in my bag and in my car, as well as some in the house. I’ll make sure I always have book copies available, wherever I go. Such is the life of the self-publisher. I don’t mind this, I’m proud of my work with this book, and I feel it is a useful book for others to have. It’s a good looking book, with attractive illustrations and a great cover, thanks to my illustrator Simon Kneebone, and my photographer Martin Christmas. Having these two professionals involved has made my special book even more special, and I’m glad to have had them both involved …

This is the life of the self-published writer. You either sell your books yourself, or find others who will sell them for you, or you are stuck with boxes of unread books. I don’t know how long it will take me to sell my first print run of this book. My hope is that I can sell them all by the end of the year, and then can order another print run. I hope this plan will work, and I hope all of the wonderful people who have a copy of this book love it as much as I do!

 

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