Category Archives: disability

Recipe for My Good Life

I have known of my Multiple Sclerosis (MS) for ten years, being diagnosed in February 2010. That diagnosis did not frighten me, it actually soothed my fears. Many other people will say something similar to my response, on being diagnosed with an illness. The human mind is often capable of thinking of things far worse than the reality of a situation. So I had MS, instead of the brain tumour, or stroke that I had feared.

The neurologist, which quickly was shortened to neuro, prescribed a medication to assist with the symptoms I was experiencing, and so began my life, of living with MS. It was a very much scaled back kind of life, but not completely, I found a different life, one connected with a new cohort, the world of disability, and I began this blog, as a needed entertainment when getting about had become much more difficult.

So blogging took off, with this one, and the book I wrote, a memoir of my new life, that gave this blog its name became an important part of my writing life. It’s  good book, that looks at many of the changes there are when a diagnosis of MS comes along. It’s my personal story, as it seemed to me, and it’s real, with some very things not usually spoken of in polite society …

My medication has changed since then, from the original Avonex injections once a week, to the current Gilenya tablet take once a day. The injections lasted for two years, and while I was managing with them OK, it was a huge relief to change, and pop a pill, instead of jabbing myself in the thigh … These tablets are working even better for me too, and sometimes it’s almost like I don’t even have MS.

But there are other reasons why I doing so well too, I think. I have a good, nutritionally sound diet, I don’t over do the alcohol, I don’t smoke. And do my best to live a stress free life, whilst also staying involved in doing the things I love to do, and to have a purpose in my life, doing good things for others. I am the Editor of the monthly newsletter for the closest town, Mallala, and this role takes in my love of writing, and editing, and my enjoyment from helping out my town.

So my diet includes red wine A small glass every few days, dark chocolate  (most nights, just a little) some grains, nuts, some fruit, more vegetables, especially leafy green vegetables, all in moderation, with some exercise, also in moderation. My prescription for a healthy life! Lately, I’ve been in locked down mode, because of Covid-19, so my exercise is often just walking more than usual, up and down inside the house for 300 steps, then 300 steps on the back veranda and around the back yard, the same on the front veranda.

I’m hoping I might actually switch on the Wii Fit machine some time soon, but I just don’t feel like doing that. I know I’ve definitely put on some weight though, so I’m definitely aware that I need to do more than I’d been doing at the start of this Covid-19 time …

So that’s it. I’m not saying that’s what I always do, but it’s what I aim at doing. Having a purpose in life is important too, beyond simply existing. That can be many different things, as long as they take you further and higher than simply being.

New Normal

The new normal, what will it be? It’s the year 2020. The year I thought would be the year of Vision, for me personally, and with my writing, and for my writing group, perhaps, not sure on that one. A group is a group, made up of individuals, lead by one person, and although I am the leader of the group, it is our group, not just mine.

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Event for Adelaide Plains Poets Festival of Words 

So this year started off well then it went crazy bad, and dangerous even. I’m OK, but that’s because I’m being good, and staying at home. Trying to get to the crux of the matter – how safe will I be if I go somewhere and encounter Covid-19? Some places say I’ll be worse off that others, other say my medication will offer some assistance in keeping me better off.

It’s still all up in the air, and no actual answer coming so I’ll continue staying at home, reaching out online when I can, hoping I stay Covid-19 free, and well … But, but, but … I am President of a group that meets every week, in a hotel. Well that isn’t happening … The group is meeting online, and that’s been good, but I’m sure I’m not the only group member missing catching up for real.

I’m a writer, being in lock down is an occasion to get more writing done. And the amount of time I’ve had, at home, just me and my lap top, and Missy our dog, often, then I should or could at least be half way through writing my first Cosy Murder Mystery book. I had it all planned at the end of last year, and it was going well. Then, the plague arrived, ruining my plans.

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But the need to write is still there, and while I’m able to do it, I will write. Whether it’s poetry, books, articles for the Town’s Newsletter that I edit (Mallala Crossroad Chronicle), fiction, or blogging, I have to write. (to be honest, I have to include flaffing about on Social Media). Social Media is still writing, right? Yeah, sure …

This all feels like a strange new world, but I’d say for many people, like me, have entered a strange new world when they were first diagnosed with MS (Multiple Sclerosis). It’s new disease,and there are new words to become accustomed to. Lesions, Sclerosis, and so on, you hear them and you learn what they mean, and you live what it brings to you, as best as you can. 

And if you don’t have MS, or the diagnosis was so long ago, you can barely remember it, this current Covid-19 Lock Down life might feel similar to what those of us diagnosed with MS first felt, locked down unable to go out, unable to do many things that you used to be able to do. The new ways become your new normal, and life continues on, but different. 

With MS, there may be improvements, the relapse that lead to your initial diagnosis may go into remission, but the MS is still there, and you know it, in the back of your mind. Or like me, you may go through a couple of medication changes, and life gets better, so that your new normal has some feelings of your previous life. But the MS is still there.

So this Covid-19 is a little bit like that, but right now, none of us now when life might achieve its settled down state, and we don’t know what our ‘new normal’ might be like. But for me, as a writer, it’s a challenge, to get a hold of what is happening to us all, so I have a new challenge, one I can do from the safety of my lap top, using the skills I already had, that of writing and blogging, and encouraging other people to write, using my writer blog

I have decided to put together and publish an anthology about the Covid-19 things happening right around the world, using the words of writers who are living this new world. I came iup with a phrase ‘Plague Invasion’ and things took off from there. My life is changed, and I’m happy with that, my new obsession/challenge is to get this book done, and ready for the public to hear about, find, and read.

I am reaching out to writers and poets, and between us, we will make a fine book, looking at this current Covid-19 situation, as it is for all of them. From the humour of running out of toilet paper, to the seriousness of the deaths, it will all be in this book – “Plague Invasion – Creative Writing Responses to Covid-19”.

It is a far from normal time, but at the moment, working on this book, that is my new normal …

Ten (or so) Years On

When I was first diagnosed with MS, hanging out and bringing in, then putting away the washing, would just about wipe me out for the day.

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Part of today’s washing, the rest is now hanging in the wardrobe already.

These days, around ten years later, I am able to do this, and much, much more, more easily, and not needing to take a ‘Power Nap’ afterwards. Keeping going helps me to keep going, but of course, being on the best medication has a lot to do with it too.

I’ve been on my current medication, Gilenya, for about eight years, after being on Avonex, for a couple of years from when I was diagnosed. I was very happy to halt getting my medication via a needle, once a week, in either left or right thigh muscle, and take a capsule instead. And the fact that it works even better for me than Avonex did, is a huge benefit, of course.

Being able to do normal things around the house, playing my part in the day to day running of the household is a wonderful thing. And being able to connect with friends and family, in normal ways, driving to their place or out to cafes, excellent stuff!

 Of course, at the moment, in the current Covid 19 locked in times, there’s no heading off to cafes with family or friends, and there is far more time spent inside, at home, and finding other ways to keep busy.

I stayed outside, after getting washing off the line, and used my mobile phone to video some ants, going about their day. Watching them getting out and about, busily rushing here and there, and having to lean over to get in close to see them, and get a good video, is something that would have been impossible ten years ago, for sure.

Back then, I had to use a walking stick to get around, and I certainly didn’t feel able to get to the back part of the yard, where the ant nests are. I feel, now. that my world was closed down, and now it is totally opened up to me, as I try things out, think about creative opportunities, and keep on doing as much as I can.

Disability may be a part of my life, but my abilities take up a much larger part, and I love it!

 

 

Shoes Will Maketh This Woman!

So, the road to recovery is here! I saw the surgeon who operated on my broken ankle again yesterday, after having another x ray taken of my ankle for the surgeon to look at, and tell me about. And the good news is that my ankle is healing very well, and I no longer have to wear a moon boot. Hooray to that, for sure. And even better

The other news is that I have to buy a new pair of shoes, ones with laces, because that is what I’m to wear, shoes with laces, but I don’t have any. Not yet. So, when I got home from the appointment with the doctor, I took off the moon boot and put it away out of site, never to be worn again (I sincerely hope not anyway!)

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The slight problem is that I don’t actually have any shoes with laces, so I’m making do with my old lawn bowls shoes, with have elastic parts to keep them on, rather than laces, and my poor foot and ankle really need laces, because of the swelling that’s happening there still (and will go on happening for some time, by the sound of it)

But being ‘allowed’ to walk again is great, and the news that I’m OK to drive was awesome! So when my husband gets home from playing bowls today (we’re very much a Lawn Bowls kind of family, our son plays too, on Saturdays, during the season), when he gets home, I’m hoping and expecting he and I will head off in search of a pair of lace up shoes for me.

I used to have a pair of running shoes (not that I ever actually run), but those shoes got old and I had to throw them away. So new shoes it is! Graham has just come home, his team won at the lawn bowls, so he is happy, and once he’s changed into proper clothes again, off we’ll go, to get those shoes!

I’m using one of my walking sticks to assist me, but I expect that will be over with soon, and I’ll be totally mobility aid free in the near future, hooray!

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OK, I’m back again, I went with my husband to look at shoes, and I found these ones, they are just what I need, and I will wear them and wear them until the surgeon tells me I don’t need to wear them any more!
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Current Infirmity

I’ve been thinking about the incongruity of my current health-related problem, and further, about the various ways our bodies can help or hinder us. Yes, I have a chronic illness, Multiple Sclerosis (MS), which is what I first began this blog to look further into, but right now I am suffering far more from an acute health problem a broken ankle.

I have been in hospital to have it treated – put in a cast first, then operated on, and encased in bandaging of sorts. Now, a month and a half (approximately) later I am finally able to walk again, in a lame way, using a walking frame … It is a far from elegant way to get about, but it works, more or less.

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I can get from place to place inside the house, carrying empty cups and plates, and other small enough items, as wished. If those cups and things have anything inside of them though, the process is a much more tedious system of moving them slowly from place to place, but picking them up and reaching further, to put them down again, move along, pick up, reach, put down, ans so on. I am so grateful to my husband/carer, who is now my deliverer of food and drink, in a much more efficient way!

But this time has certainly enabled me to think about things, and I have been writing about my thoughts, many of which, not surprisingly, have tended to be about my broken ankle. The poem I am going to put here is yet another poem regarding my fractured ankle, and I make no apology for that, because this is the most important thing in my life right now …

If you have ever suffered from such a thing, you will certainly understand how it is, when even if you want to get out and about, doing things, you will need assistance, in different ways. I can’t walk very far, nor can I drive. My walking, and my ankle are getting better and better, and while there might be some slight discomfort, there is no actual pain, not now.

The driving will have to wait on the OK from my medical team, GP or surgeon, I’m not sure which. Certainly, driving won’t be allowed while I am still wearing this moon boot, I put on every morning and take off every evening. And until my ankle is strong enough that I would be able to use my foot to jam on the brakes in an emergence, I doubt I’ll be allowed to drive …

Anyway, here is my most recent poem I have written about my ankle. I suspect I will probably put all of these short poems together in a chapbook, and either submit it for publication, or self-publish it. I don’t know how much interest there might be in such a volume, but it interests some others, for sure. Those who have suffered in similar fashion, or cared for someone so affected.

And so the poem, which may bear the name of that poetry collection, if it happens …

 

Angles on ankles …

The ankle, a simple thing –

a movable hinge, where

foot and leg meet, moving

us, as wanted – forward, 

backward, or sideways,

until, suddenly, crash!

You fall, and the angle 

of the ankle, and the pain,

indicate something gone

terribly wrong. Fractured

a word, never wanted

in terms of ankles, but 

happening nonetheless.

Angle fixed, ankle in cast –

under the skin, attached

to bone, a post and screws.

Bad news, or not? Fixed

but still moveable, painless,

mending, trending toward

healed, my soul rejoices

even though my leg looks

less than lovely, a new boot

encasing and enhancing 

my leg, strengthening

what I have, so walking,

though slow and halting,

can occur, and I can stir,

arise from seated on sofa,

move from here to there,

and am glad to do so – free

up to a point, but reliant

and grateful, that the angle

family and friends have taken

is to step in, step up, go 

the distance, and so help 

to keep me on track!

 

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If you’ve had to wear a moon boot too, feel free to leave a message here about it! I’m glad to have my moon boot It helps me a lot, but I wish I didn’t have to wear it!

These Testing Times

I’m feeling very happy today, I’ve finally been able to ‘walk’ after fracturing my ankle about five or so weeks ago. I had the ankle operated on, and have been doing lots and lots of zero weight-bearing … This is what the surgeon has advised, but the last time I saw her, she indicated I could begin bearing some weight on that foot, in the week before I see her next.

So, that is what I’ve begun today. Using the walking frame I have at the moment, and actually putting my damaged foot on the ground, (while taking most of the weight on my hands). It feels good to be ‘walking’ in this scaled down way. I also have my moon boot on, which takes a lot of the weight off too.

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I’m paying maximum attention to how my ankle feels, and so far, no problems at all so far. Now I have to do a bit more of this moving around, to go and get my dog Missy some food, and to go to the other room where my other mobility aid is, the Knee Walker.

All of this rehab, after fracturing my ankle is quite different to the various rehab things that my chronic illness, Multiple Sclerosis (MS) entails. Acute illnesses, such as fractured ankles, involve different things, because my MS is more or less controlled with medication, and is going quite well. The ankle though, that requires time, and rest, and not pushing myself too much.

Anyway, today feels like an empowering day for sure, and I’ve done what I often do, and written a poem about it all! Please read the poem, and let me know what you think of it!

 

Testing Times

 

Testing my ankle, trying it out

Scared but not scared, a little doubt

Using some aids, moon boot and frame

It’s sort of walking, but not the same

 

Moving around though, meter by metre

Brought forward advice, I want to be fleeter

I won’t regret this partial weight bearing

I’m feeling good, no pain, being daring!

 

Back to other aid now, I need to use hands,

Lunchtime brings other demands,

Carrying skills, coffee, and such

I won’t overdo things, won’t do too much.

 

But Missy and I both need our food,

And feeling in a ourageous but careful mood

So I’m off to get my Knee Walker again,

Walking frame to Knee Walker, turn around then,

 

Off to the kitchen, start coffee, my lunch,

Grab container for Missy’s dry food to munch

Then get Missy’s food, coffee’ll be ready

Taking it easy, I’ll make sure I’m steady.

 

So coffee is calling, and my tummy is too

So up I get to do what I have to do.

I’m tending to needs, minding how I feel

The girls of the house having our meal!

Falling Down, Getting Back Up

So, OK, this wasn’t one of my most glorious moments, perhaps, but I can honestly say I am extremely proud of myself for what I did earlier today. It happened in the most inglorious and smallest room in the house, yes, the toilet.

I had done what I had to do, and then proceeded to go from there to another, more salubrious room in the house. I’ve done the transfer from raised toilet seat, to walking frame, to Knee Walker, to sofa many times since I came home from hospital, after having an operation to mend my newly fractured ankle.

But Oh No, something went wrong, and instead of ending up kneeling with one knee on the Knee Walker, I ended up collapsed in a heap on the floor of the toilet. Boo! What to do? I knew my husband was outside, mowing the grass outside, getting ready for possible snake season. Even if I yelled loudly, he wouldn’t hear me. I sat there a moment, on the cold tiles, and thought.

The Knee Walker was right close by, but getting onto in from my ‘floor sitting’ position, was impossible, I know this because I tried it. No can do. I set up the walking frame in its usual position against the toilet door, and sort of slid along the tiles toward the Knee Walker. My plan was to move the walker to its usual position next to the sofa, where I can easily get onto it and use it properly.

And I was going to do this, while sliding along on the ground, on my bottom, using both my left ‘good’ foot and my right ‘fractured ankle but mending’ foot. I got started, pushing the Knee Walker, turning it in the right direction, zooming it along the tiles and out of the laundry, as best I could.

It was like a return to my earliest years, before I learned to walk. I did it then as a child, I could and would do it again as an adult! The walker doesn’t zoom smoothly in one direction, when bushed from behind, from down low. It goes a short distance then turns and stops. It was a little frustrating, but I knew I had to do it, if I wanted to get to the sofa, the lovely comfortable sofa, where the TV was, and my water bottle was. I had to do this!

At least once I was onto the carpeted area of the house, it was warmer, even though the sliding was a little more work. I did it though, slowly but surely, the walker in front and me on my bottom, following along behind, I go to the sofa, left the Knee Walker in its best spot close by, and I pulled myself onto the sofa. It wasn’t elegant, it didn’t have to be that, it was effective, which is all I needed it to be! I got onto the sofa, got all of my cushions and the chair to put my foot up on, in order, and I sat back and rested.

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Hooray, what could have been a painful or at least embarrassing and uncomfortable thing, turned out to be a victory – Carolyn against disability, and Carolyn wins! With my MS, I have never had anything as bad as this particular misadventure, possibly because when I was at my most affected by MS, I wouldn’t have done what I did today, I instead would have had someone there to help me, and I would have accepted that help.

I think at the moment though, I am feeling more and more able, even though I am still unable/unwilling to walk on the foot with the fracture, until I get the go ahead from the surgeon who operated on my ankle just a fortnight ago. I don’t want to damage what the surgeon was done, and time will tell how things are going there. I have an x ray and surgeon visit lined up the week after next, and all will be revealed.

 

Fractured Thoughts

As I’ve mentioned on this site recently, I am currently getting over having a fractured ankle. This is not a good thing, there’s no arguments about that, I’m sure, but I have to say, in my opinion, anything that brings new poems into the world isn’t all that bad.

I’ve been exploring a new world, one of acute, rather than chronic illness, and these poems are here as a result of my thinking.

So, as a poet, one with a newly fractured ankle, here are three new poems. Read them, and you can see a little bit about my somewhat fractured current life! If you have nay comments about any of these poems, I’d love you to leave a message here!

‘Railroad’

 

I’m taking my time, slow, not sure

I’ve never faced this one before

Sitting down on my bum all day

My fractured ankle making me stay

 

A steady train-track of action/reaction

And not a one for the delicate faction

The pain intense, but silenced a little

Pills calm pain from bones, too brittle

 

Over a week this train ride as taken

My faith in myself, stirred and shaken

Recovery will come slowly, bit by bit

I’m not being lazy, as I stay here, sit

 

Next week will bring things to do & see

Workers with a new program for me

They’ve done it before, and know it’s real

They’re the experts who’ll help me to heal

 

‘My own Observation’

 

New hospital, nice sheets, brain 

switches on. An insight gained, 

or reason why, Nurses do that, 

with their pen. They stick it in 

their ponytail the way they do,

so when they do the obs, it’s 

right there when they need it, 

Obsviously!

 

 

 

 

 

 

‘An Alphabet of Hospitalised Wisdom’

Ankles are more necessary than you might realise, value your ankles, for they far more important than you may realise.

Bones & broken – a painful pair of words, as I have recently realised!

Challenges are character building, in good ways or bad, always do your best!

Denial of truth is huge problem in the world, and whgoile falsity continues to be wholeheartedly embraced, problems increase …

Ego – not a dirty word, unless there is no understanding …

Family and friends, nurture them, and you will always have help if and when you might need it.

Gratitude – if you can find at least one thing to be grateful for every day, it will help you have a happier life.

Heart – when you think about things with your heart as well as your head, you can make more meaningful decisions.

Inspiration is a wonderful thing in life, look for inspiration, be an inspiration, an inspired life is always the best life to live!

Justice – think on what is fair, what is right, and what is deserved. Punishment with no plan for rehabilitation is never going to make things better.

Kudos – always give people credit for the good things they have done, give the same to yourself, as & when appropriate.

Love can be the answer to finding true purpose in life, and living in ways to meet that purpose should be what aim for, always.

Mindfulness, a word, a way of life, an answer, perhaps THE answer, to ‘what it’s all about’.

‘Never’ is a huge word, & one to be wary of, because it doesn’t leave room for changes to happen, which may become necessary when circumstances change.

Open mind – if you can keep your mind open to all that occurs, considering multiple aspects of things, you will be able to make better decisions on all things in life.

Purpose is what keeps you headed in the best direction throughout life. Thinking and then acting on thoughts about your purpose in life is the best way to go.

Quality will always beat quantity, a little of the very best is far better than more than you need of  mediocre things.

Rational ideas, and actions are what separates humans from animals. We think on things and consider them rationally and so can make the best decisions.

Sense – making sense of things is what we should try to do, and if we fail to do this, we will pay the price for our lapse.

Truth is better than a pretty lie, and truth is how you can maintain the inner core of your best possible self. Never lie to yourself, always consider truth as your base level.

Understanding will take you to where you want and need to be. Think on things and work toward gaining as much knowledge as possible, so that all things can move in the best direction for yourself, family & friends, your community & the world.

Verification of the words of others, so that truth is known and understood is vitally important, always.

Wisdom is when all possible things are taken into account, before action is taken, and acting with wisdom should be the preferred option, always.

X – exceptional results, exciting times, exceed expectations and thrive!

You are the agent of all! If you don’t take action yourself, and merely react to things that occur, you are on the periphery, the edges of life.

Zeal and zest – these are great ways to live your biggest and best possible life. Enthusiastically embracing all that life presents to you is the best way to be.

From Chronic Illness, to Acute Pain

I have known of my chronic illness, Multiple Sclerosis (MS) since I was diagnosed with it in 2010. Living with MS has certainly had its challenges, from finding the best medication to treat the disease, to understanding how to live with the changes having MS have brought.

After all of those years, I can honestly say that meeting these challenges has been a good thing for me. Although MS has brought changes, it has also brought me clearer vision of what is truly the important things in my life.

I have thought hard about what is truly important to me, what really matters, and what I can leave behind, and not bother about any more, because it isn’t really important, it is an unnecessary thing, a mere distraction. I have recently begun studying Stoicism, and I feel this way of thinking suits me well.

I believe in doing the best I can for myself and for others, and this brings me much satisfaction with myself. Now though, I have a new thing in my life, a new challenge, and this one is an acute illness, which will not be with me forever, because this new thing is treatable, and I am certainly being treated for it.

This new thing has caused even greater mobility problems for me than MS ever has, but with the treatment I’ve had, and the treatment to continue for a month and a half, it will be all over, and walking will be simple again.

This thing is a fractured ankle. I fell over last Saturday afternoon, crash bang, and I couldn’t get up again, even though I tried. The excruciating pain was the worst pain I have ever felt. My husband called an ambulance, and then began my road to recovery.

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First off to the nearest hospital, having treatment for the pain on the way there. Then after having my fractured right ankle put in a ‘back slab half cast’, I was taken eventually to another hospital for a day and night. Then it was organised that I would go to a different hospital to have my ankle operated on.

I now have my leg bandaged, with the back slab cast and have finally been able to come home, where I have to sit with my right leg raised, with my ankle up high – higher than my hip or heart. up high anyway. Apparently this will help to reduce swelling, and my body can go on with healing the broken bones.

I have very good pain relief available, and I have mobility appliances to assist with moving about, when needed. This is only toilet breaks and going off to bed so far, I’m not interested in going anywhere else, anyway, not at the moment. I have my phone, my laptop, the TV, and my husband is here to get me anything I ask for, and to bring me the things I want and need, pain medication, drinks and food, and also to assist as needed to get myself moving.

I have a knee walker and a walking frame, as well as a toilet seat raiser, on hire to assist me. And the pain management is working well nothing being too much to bear. Life though changed, is still good!

So yes, it’s a limited life I’m living, but a good one nonetheless, and it makes me thankful for all of the lovely people I have here in my life here with me. I have a recovery plan set up, with visits from a nurse, a physio, and an occupational therapist, to help me to get my life going along well, or as well as is possible with a fractured ankle, anyway. Haha! I’m hanging on tight to my sense of humour!

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Life offers us challenges, and we must rise up to meet them, in the best way possible. That is what I’m doing, with humour and with gratitude for all of the good things there to counter the bad.

 

 

After Recent Neuro Visit

Today I had my annual visit to my neurologist, and I have to report I am more or less happy with the result of it. I had my muscular abilities tested (arms and legs) my eyes too. He always does these tests.

I measured up well enough that he certainly seemed perfectly satisfied with how I’m going, as I am too, for the most part. But visits to this specialist tend to leave me slightly dissatisfied, in minor ways. I feel it’s because I feel like I’m wasting his time, perhaps, and my own time too.

What do I expect from my MS specialist? I’m not sure. I do know that he is good at his job, and knows his stuff. I am on the best medication for my Multiple Sclerosis (MS), and that is because that is what he offered to me, once it came out in Australia. Gilenya has been great for me.

My blood test results are good, and I feel pretty good too. I certainly have some problems, health-wise, but only minor ones, compared to what many are faced with, who also have MS. I do feel that particularly in regards to my mobility, I’m going well. There is certainly no need for a wheelchair for me, no need at all.

grayscale photo of wheelchair

Photo by Patrick De Boeck on Pexels.com

I don’t do marathons, that’s true, and doubt I could manage one, but doing marathons has never ever been on my list of things to do. If I wanted to do one, I feel that, with a good physio advising me, I could do one, (after lots of training!). It isn’t something that interests me at all though.

I’m more a brain type, not a brawn type. I only want to be physical enough to be able to walk around, drive my car, and get lids of jars if my husband isn’t around assist! If I were to lose my ability to get around, that would be a huge impact on my life, for sure. But at this stage of my life, it isn’t looking like that will happen, not for a long time yet, anyway.

The issues I have with MS that are troublesome tend to be related to incontinence, and that isn’t something that’s terrible pleasant to talk about, but we did discuss it briefly, and he reminded me it’s something we spoke of at my previous appointment. I indicated the issue has worsened a little, but when he suggested a couple of things, I let him know I was happy enough I had the problem under control, really.

When he mentioned Botox as a possible treatment, I let him know I was definitely not interested in that. I feel my problem is more a muscle related one, and doesn’t need Botox, if anything, it may benefit from training in pelvic floor muscle exercises. Apart from that, as I told my neuro, I have funding from the NDIS to assist with pads to assist with continence.

So basically, I actually have things under control, and am not interested in the things suggested. Is that why I feel that tiny bit of dissatisfaction? These visits to see my specialist are not free, and I didn’t have private health insurance, they may be less than easy to pay for. So do I feel I’m wasting my time and my money going to see him?

Well sort of, to some extent, but not really. I think it’s good that there is feedback between my GP and my specialist. My GP does the getting my blood tests organised, and has the results sent to my neuro. My bloods are good, going by my most recent tests, no negative affects on my liver, etc. All good.

So really, going to see my neuro annually is fine. If and when I have any more pressing issues, I know he’s there to investigate things that are beyond my GP. Do I need any more than that? No, not at the moment. Maybe my whinging is because most of my health issues are simply because I am getting older, and I don’t like that fact?

Yeah, that’s probably that, as well as my neurologists less than soothing ‘bed-side manner’. He is blunt, not rude, or anything, just straight forward and honest. Ah well, such is life, I’ll suck it up and be grateful for my good fortune, and stop being such a sook!