Category Archives: MS

Exercising Does Help!

As a person with the chronic illness, Multiple Sclerosis (MS), who is managing quite well, really, I am a good example of a few different things. These are not in any particular order, and some days one will feel the most helpful than at other times. So here is the list:

  1. Exercising
  2. Having a nutritionally sound diet
  3. Living with as little stress as possible
  4. Finding the best medication to help
  5. Having a positive attitude in life

My exercise program is very much an on and off again thing. At the moment, it’s mostly very much On, and I’m feeling the benefits of that, I think. I feel capable of physically doing the things I want and need to do, and I certainly like that! I am a member of the MS Society SA & NT and on their Facebook site recently they had a program of six weeks of challenges, where interested people could indicate their chosen challenge, and report on it and encourage others doing their own challenges. My challenge was to do ten minutes of exercise every day, so I tried to switch on our Wii Fit machine to do at least that much or more exercise, with the machine. Six weeks is a good length of time to set a habit, and now I feel as if something is wrong if I don’t switch the machine on in the morning, unless I am busy doing something else. So far I’ve lost a little bit of weight, which is good, but I also feel stronger, which is great!
hula hoop for blog

My diet is pretty well a good diet, I get sufficicient nutrients from eating fruit, vegetables, some grains (not enough probs), nuts, and some meat. I also have a moderate amount of coffee, because I love it, but I make sure not to overdo it, and to only drink coffee later in the day if I am going out, and will be home late. I try to remember to drink sufficient water too (not eight cups of water, because I don’t need that much, I’m a small person, and not a super athelete or physical labourer.

IMAG0304

(the plant above is Purslane, a good source of Omega 3 Fatty Acids, which we now have growing at home, and I am trying to eat some of it every day – trying, but it isn’t a habit yet, I hope it will soon though!)

I am currently trying to move into a secular Buddhist kind of life style, and also am looking at the Stoic philosophy tenets. My natural life attitude seems to be that of an accepting realist, one who looks at life, thinks on it, and deals with what life offers to me, or hits me with. I then deal with whatever that is, in what seems to be the best way possible. I don’t overreact, I simply go on with my life however seems the right way to go, thus reducing stress.

chptr12 pic

(picture by Simon Kneebone)

I was diagnosed with MS in 2010, and my neurologist advised me to use Avonex, which is and injecable medication, used once a week, with an injection directly into the muscle. So soon after learning I had MS, I began jabbing myself in the thigh muscle, left one one week, right one the next week and so on. This went on for around two years, and worked OK, but I was very glad to change medication to a tablet form Gilenya, which is a little tablet taken once a day, every day. This is easy to do, and a much more  pleasant way to have my MS meds, that’s for sure. This medication is helping me even more than the Avonex did, and I can see myself staying with this MS med for a very long time into the future.

Having a positive attitude to life. Hmm, I’m definitely a ‘glass half full’ kind of person. If there is a good side to anything at all, I’ll find it, it’s one of my valuable skills! Anyone I meet could become my next good friend, and I treat every opportunity, at the very least, as a new chance to learn. If things go wrong, wow, what a grand time of learning new things that can be! If and when I do something incredibly stupid, which happens more often than I’d like, well at least that’s one more thing I know I should try hard to avoid happening again! I know many people and I’m glad that I can be friends or at least friendly enough acquaintences. Or if they are truly toxic people, I know I don’t need them, and am comfortable in offloading them …

OLYMPUS DIGITAL CAMERA

Life is a crazy mixed up bunch of stuff, and I use my life to measure up the good, the bad, and take what I want from it all! I’m currently putting together some ideas, and wise thoughts of my own, with the plan to make it into a published book at some stage, and I have some other ideas for books to come in the future. Life seems to be a very good thing, from where I’m looking!

I write about these things, and I love to talk to others about these things too! If you need a Public Speaker, ask me, I’ll do it if I can get there!

Advertisements

Being Positive Helps

Having a chronic illness is never a super fabulous thing to have. Whether it’s diabetes, arthritis, asthma, epilepsy, or any one of the many chronic illness that can hit a person, it will bring challenges to your life.  My own chronic illness is MS (multiple sclerosis).

I’m fortunate to be living well enough, with my chronic illness, and I am certainly grateful for that. I have found a medication (Gilenya), and a way to live my life that helps to keep my symptoms at a low level. I’m careful to eat well (plenty of fruit vegetables, not too much saturated fats or salt), and to exercise my body. I also think good thoughts, concentrating on the good things in life.

hula hoop for blog

I firmly believe in the good that can come from having a postive attitude to life, concentrating on the good things, not the negative bad things. There has been reputable investigation into this very issue, about the good that positivity can do to your body. This article talks on these matters.

I also have a broad circle of friends, see my family members regularly, and am strongly connected with my communiy. These things all add up to a fine, fun, and fabulous life, chronic illness, huh, step outa the way, I’m busy having a good time!

phun phlower photo

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.

2016-03-09 12.38.22

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 …

OLYMPUS DIGITAL CAMERA

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!

 

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 …

IMAG0087.jpg

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!