Category Archives: MS

Being Mobile Aids Mobility

When you have a disability that results in lessened physical abilities, it makes sense to listen to ‘the experts’, doesn’t it? I have Multiple Sclerosis (MS), and the experts have told me that being active will, or at least might, help me to regain, or retain physical ability.

When I was diagnosed with MS, my new neurologist told me to walk for half an hour. I think he meant to do this every day, but that I should work up to that level of ability, because at that time, walking for half an hour didn’t seem to be something I was physically capable of. MS had hit me and my muscles on my right side, including leg muscles were very weak.

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My new medication for MS seemed to help me though, and the exercise I began doing helped too. I’m on a new medication now, an easier and more pleasant one, and it seems to be working even better for me. My initial medication had been the injectable once a week one, Avonex. I didn’t like sticking a needle into my thigh muscles, left leg or right leg, but I did it, for two years.

Then a new medication come to Australia, Gilenya, which is a little capsule that you take once a day. It is much more acceptable to me, so much easier to have my G at breakfast time, and no nasty injections in my muscles! I still don’t walk for half an hour every day though, even though my neurologists words, ‘Use it or you lose it’, echo in my mind.

I do try to add walking, and other exercises to my life, every day. I park a little bit further away from where I’m going, or sometimes (not often enough!) I get my hand weights out and do some lifting for a while. I have to admit that in reality, my weight lifting is fairly negligible, so  don’t brag about it. At least it’s something though. I certainly feel better, if I am being more active, anyway.

above the fish pond

Getting out into the garden, walking around, looking at the flowers and trees, and the vegetables too, these things help me to get sunshine, get active, and sometimes get yummy things to eat. And if I’m in the garden, I am standing, walking, bending over and other active things. Being in Nature is good for me in other ways, good for my happiness, my feelings of greater connectivity, as I think about all of the Nature out there, and my own part is the whole world!

clover burrs

Spirituality, and all of that connecting with Nature stuff resonates for me. I am a secular person, not religious one, but I believe in the benefits being in and with Nature gives to me. I feel happy when I can see trees and clouds, and all of the creatures (not the snakes, I never like to see them, not the poisonous ones anyway!) And of course, being out in the sun can help my body build up more vitamin D, which is good for me. Too much sun though can lead to skin cancers though, so it’s a matter of getting enough, but not over doing it.

A lot of life is like that. Living a good and healthy life is all about moderation, a lot of the time. I like moderation, a little bit of wine every now and then, a small amount of chocolate, little bit of cake or other desserts occasionally, and then plenty of vegetables, with moderate amounts of fruit, meat, grains …

I get out and about, my writing group once a week, and other writing related things too. I take an interest in my community, and do various things to help others as and when I can. I’m also conscious of the mental health benefits to be gained from keeping my brain active too. Writing helps with that, connecting with online communities can help, being active in a variety of social media things, but again, in moderation …

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I will continue living my moderately mobile life for as long as I can, sticking with my medication, and staying with Nature too. I love the trees and I hope the trees love me!

 

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Latest Neurologist Visit

I visited my neurologist yesterday, to find out the results of my most recent MRI scan. He was very pleased with my results, and I am too, really. There is no sign of any new scarring, or any other nasties there, so obviously the Gilenya capsules I take every morning to deal with Multiple Sclerosis (MS) are working, and working well. I am certainly happy about that, and taking the little capsule is much nicer than having to inject myself in the thigh muscle once a week, which was my initial treatment option after I was diagnosed with MS.

The injections, Avonex, were of some help with my MS, but the Gilenya is more effective. So my MS seems to be under control to a great extent, and I don’t need my cane or my walking stick, and I certainly don’t need my walker. My neurologist tested my memory, and my thinking skills, as well as a brief test on the strength of arms, and also tested my peripheral vision, all with good results. This is all very good news. So why, I wonder, do I feel dissatisfied?

My neurologist is thrilled with how I’m going with this wonder drug, he’s far more thrilled than I am. Well no, that’s not really true, I’d hate to go back to being as frail as I was back in 2010, when I ended up going to visit a neurologist for the first time, and so met this man for the first time. I never really took to him, but I certainly don’t hate him. He just seems too flippant, and so sure the medicine he’s put me on is the only reason for my better health,. even though he is also happy that I’m good about having a good diet too.

It’s all a bit mixed up in my head. I’m quite well for my age, especially considering I have MS, and my memory is good, etc, so why does my mind get in a muddle sometimes … Ah well, I think it’s time for me to sit back and just be grateful that I have a medication that is easy to take, and is effective. That will be my plan, be grateful, and stop trying to find reasons to be unhappy about all of this. So Carolyn, don’t be an ungrateful little wretch, don’t worry, be happy!

Not Too Hot & Not Too Cold …

Oh, if only I could find that sweet spot of not too hot and not too cold. Sadly though, I’m going from too cold then too hot and then back to too cold again. I know it’s a little too hot outside or maybe even much too hot, I haven’t been outside for hours, not checked out the outside temperature. I just know how this room feels to right now, and it’s a little too cold …

Ah these first world problems, I have air conditioning and can’t find the just right temperature, when there are people in other towns, or other countries who are dying of thirst, or freezing to death. It’s a sad thing, I’m very aware of that. I give some money to charity – to Medecins Sans Frontieres, every month, and hope my donation helps some people.

Our house has some insulation. It was put in quite some time back, and we are assuming it is still more or less effective. Certainly our air conditioning is effective, keepin us cool or warm, as needed. But as the woman of the house, I prefer the house to be a little bit warm, whereas my husband prefers the house to be a little bit cool. I can always put on some more clothes though, and there’s a limit to how much he can take off. Once you’re down to underwear, that’s about it!

We also have solar panels on our roof, and these help us with some of the costs of our air conditioning. I love these blue sky days we’ve been having, sending down the sun’s power to our panels …

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The MS I have might play some part in the temperature troubles too, I’m not sure. Sometimes at night when I’m in bed trying to get to sleep, I can feel both too hot and too cold, both at the same time. It might not actually be an MS thing, but that’s what I’m putting it down to. If I shrug and say, oh, that’s just MS, I can just get on with trying to live my life as best I can, pull up or throw off my light blanket, and drift off to sleep.

Many people have big problems with sleeping, but I’m not one of those people. I drift off to sleep fairly easily, and don’t wake up until after I’ve had a good bit of sleep. I have to head off to the loo for a tinkle some nights, but not every night, and can go back to sleep again fairly easily. I certainly don’t have to worry about my home being blown up, or not being able to eat enough food. My life is a good one, a very good one.

So yes, I have MS, and various symptoms that can go with it, but I am living a great life with MS, just a different life perhaps than I would have been living without MS.

Sometimes I Suddenly Realise Something …

Yes, suddenly something true hits me and I realise I am both clever, for realising it, and incredibly stupid for taking so long to realise  it! Do you ever have times like that, when a thing suddenly becomes obvious to you, and you can hardly understand why it took so long for the truth to hit you? Today was one of those times for me.

Today, in South Australia, particularly in the mid north region the weather is hot, very hot. At the moment the temperature in the shade is apparently 43.2 Celsius. That is hot. We (my husband and I) decided we had to do our washing today, so Graham put the washing in the machine set it off to do its thing.

My part was to hang the washing out and then bring the washing in when the time was right. The machine eventually stopped and I went to the laundry to put the now clean clothes into the laundry basket. When I went into the backyard with the washing, I looked over at the clothesline, and it hit me! The clothesline, or at least half of the line, was in the shade, just a small amount of shade, but plenty enough for me to stand in, between the tree giving the shade, and the clothesline. I could be in the shade and hang out the washing at the same time!

Ananka

In the photo is our first female Pharaoh Hound, Ananka, the photo taken probably about ten years ago. She is standing next to the tree I was standing in the shade of today, but I was further around to the right of where she’s standing in the picture …

Of course, of course, of course! I have lived at this house for nearly thirty years, with the same clothesline, and the same tree. The tree may have just been a small bush when we first arrived, but it’s definitely been tall enough to bring shade to the area of lawn next to the clothesline for a good few of the years we’ve been here. The peg basket is usually on the side of the line across from the shade, and closest to the laundry door, so that’s where I always go to hang up the clothes, near the door, and in the sunshine, whether hot or cold or pleasant, that’s where I go.

But today’s the day I realised I didn’t have to overheat, and feel like my ability to stand up was slipping away from me from the heat. Today I stood in the shade, moved the peg basket around to the shaded place where I’d put the washing basket, and I hung out the washing in the shade, the lovely, lovely shade! I have no idea why it took me this long to figure this out. I also don’t know whether my husband realised this was possible, or even if he would ever be bothered as much by the sun and heat as I am. Well I do know that, of course. He doesn’t have MS, and he isn’t in danger of fading and falling from excessive heat …

I’ve brought the washing in again now, out into the shade from the tree, and then into the sunshine briefly, and back inside with the now dry washing, yay me, and yay to my mind for the slow but great realisation! Do you ever have any of these Ah ha! moments? Please leave a comment and tell me about them, I love reading about these things!

 

 

Oh This Hot Weather is Hellish!

I love in country South Australia, and at the moment, we’re in the middle of a heat wave. The temperature yesterday hovered around 40 and above (celsius), today at the moment, the temperature on my back veranda is 45.3, that is, as I said in the title, Hellishly hot! Everyone is feeling the heat of it, but for those of us with MS, there are the further problems from our MS rearing up and biting us if we get overheated.

Then, even if we do have good cooling available, as I have, there’s a further issue from getting too cold. Both of these things can affect us, when we have MS. I have the air conditioner on, so it cool inside. which is lovely. But I don’t have my socks on at the moment, so my feet are way too cold. They feel slightly numb with it, and look a bit purple. I think I’s time to get my socks back on.

Yes, that’s better! My knees are also cold, and my lower legs feel like they somehow aren’t really there. It’s a weird feeling, like from my knees down to my ankles, there’s nothing. I can feel my ankles and feet now again, because I’ve put my socks back on, but I know I’d better go and put trousers on soon. I’ve been getting about the house all day in a sort of dress (long t-shirt), and my legs are certainly not used to it. The times I’ve had to take the dog outside though, that’s been much better with sunshine on my legs!

Outside though, the heat rising from the ground in the sun is horrendous, and I know my car will need the air con on before I get into it, which I’m going to have to do in a hour or so. This is awful weather, I’m glad the car has air conditioning, and so does the place I’ll be going to. I’ll manage today, but tomorrow we’re having another dose of heat. It’s summer, it’s South Australia, and I suspect Climate Change is playing some part in it.

Anyway, I’ve put water outside for birds, I’ve been drinking lots of water all day today, and the dog has water available in the kitchen. But Missy just walked over to me again with that look that says “I wanna go out” and then she walked off to the back door, I think, so I’d better go!

Bigger Things, from a Small Wound

At the moment, I’m battling … Not the Multiple Sclerosis (MS) I’ve had for nearly eight years now, that’s going along quite well, mostly. I’m not battling that so much as simply living with it, knowing what is good for me, and what isn’t, and shaping my life around those things that MS has brought to me. So no, that’s not what I’m battling.

I’m battling something I shouldn’t have had to battle, and perhaps if I’d realised the extent of the possible problem, I probably would have better dealt with it in the beginning, and so wouldn’t have to be having any battle at all. I didn’t realise the extent of this problem, and just left things to sort themselves out, thinking that would be just fine. I was wrong.

Things aren’t just fine. They aren’t terrible, not yet anyway, and hopefully I’m on top of it now, so they won’t go that way. If things aren’t better, or at least almost better, I will be heading off to the doctors early next week. I feel silly about this, but there you go, It’s the Christmas season, other things get in the way, and things that should happen, don’t happen. So what is this all about? I’ll tell you …

Around three or four months ago, I was doing something I know I shouldn’t do, and that was picking at the dry skin on the side of my face, close to my right ear. I went a bit overboard with my picking, I suppose, and there was a bit of blood, not much, just a little. I thought nothing of it at first, but it bled a little bit more and it ended up as a scab, about the size of a man’s thumbnail. I assumed it would dry out and drop off quite soon. I was wrong.

I went through the Season, up to Christmas Day and beyond with this scab on the side of my face, just sitting there, not being a bother, but simply a very much less than attractive feature. Still nothing to really worry about though. With MS, wound healing can take longer than it would have in a person without MS. I knew that, so, as I said, didn’t worry.

Then the scab got painful to the touch, and I decided it may actually be a good idea to do something. The battle had begun! Three days ago, I put betadine on the scab, and noticed there seemed to be some kind of liquid oozing slightly from the scab. I didn’t like that, not at all, and the scab was still painful to my touch, when I put the betadine on it. I wondered whether that wound had become infected.

I’ve put betadine on that scab every day now, and this morning I discussed the issue with my husband and we are now both aware that it will be a doctors visit if things don’t improve. My husband is my carer and he takes his responsibilities in looking after me seriously. Sometimes too seriously for my liking, but not this time. I hadn’t thought about this until yesterday, but I’m feeling a bit weaker, and getting more tired at night, fatigued, in other words, and that’s when I began wondering about the possible interactions between this possibly infected sore, and my MS. I turned to the internet and discovered an interesting and relevant website.

So it seems my thoughts about my weakening body, and the scab/infection could well be the source. The body usually deals well enough with infections, doing good job of it for most people. Those of us with MS though, may have issues with that, and especially if their MS medication affects their immune system. My medication, Gilenya is certainly one of those, that’s what it’s supposed to do – It reduces the number of white blood cells in my body and so reduces the damage done (MS is from when the immune system for an unknown reason, attacks the Central Nervous System, causing scarring, which can slow or prevent the passing of nerve impulses to the body).

So, my thinking is that the weakening I’ve been feeling could well be caused by the infection affecting my body in was that could get worse, that’s why I’ve stepped up the battle a bit more. So earlier today, I put another dose of betadine on the wound, a bigger dose of it, and I’ve put a wound dressing in it. So take that small wound, I’m onto you, and you won’t get me!

 

My MS Update

Today I visited my neurologist, after quite a long time away. He was surprised it had been so long, and was pleased with my positive progress in my MS journey. Apart from issues I have with my cholesterol, which he claims is unrelated to Gilenya, I am doing well, based on my physical abilities.

I am definitely in remission, and glad to be so. There is no way of telling how long this remission might last though, and I am aware that I need to make the best of these good times … MS is like that, of course. It is both relapsing (the bad times) and remitting (the good times). My neurologist and I will see each other more often that the approximately five years it has been. I am going to organise an MRI scan soon, and will be back to the neurologist early next year, to look at the results, and also to see if my cholesterol levels improve since upping my medication for that issue.

I’m glad with these positive results, happy to be going well with my life, and sad for people I know, and others with MS who are not doing anywhere near as well. Health is a mixed bag for us all, and we never know when our bag may suddenly contain bad things instead of good, or vice versa … Life is a jigsaw puzzle, a challenge, a joke, an inspiration, a disaster … One never knows how or when things might change, with health, happiness, family, or friends.

Living the best life you can can always help to keep you going well, in my opinion, and I am quite sure my positive attitude to life is one of the reasons I am doing so well. I don’t sit around moping, I sit around organising good things, both personally, and with and for others. And I don’t just sit around, of course. We own three dogs, and while I am not responsible for all of the things that need to be done to keep the dogs happy, I certainly do some of the things, like feeding and sometimes cleaning up after them …

I get out and about as well. fortunately I am well able to drive my car, and as long as I have that ability, I am able to be involved in the weekly writing group I run, meeting up with other committee and other members for meetings and events, and generally having a good time with like-minded people. I go to MS related things too sometimes, but this has become a thing I do less often, and my abilities have become much better than they were after my first experience with MS.

Life is good!sofa dogs