Specialist Visit Tomorrow

When I visit this specialist, we’re talking about the chronic illness I have that most disables me, of course, Multiple Sclerosis (MS). This person has been my neurologist since I first knew I had MS, because he is the person I was sent to by my own GP, when I had the results of the CT scan that indicated something was wrong, but more information was needed.

This neurologist, or ‘my neuro’ as I now refer to him, sent me off for another test – an MRI scan. When I visited him again soon after that, to talk about what the MRI revealed, he told me I had MS, and that was it. We talked about what that meant, I think, but we talked most about which medication I would take. This was back in 2010, and the options for medication were the choice of injectable medications, or monthly infusions. (I could be wrong, that may not have been an option, can’t remember).

I chose the needle to happen weekly rather that daily or  every other day, or every three days, and there it was, I was on a regime of injecting myself in the thigh muscle on the weekend, every weekend presumably for the rest of my life. I wouldn’t have thought, previously, that I could have done that, but it turned out I could do it, and I did it for two years, rather than for the rest of my life.

After regular visits to my neuro, (and my own following of the medical news regarding MS) I learned of the arrival of a medication I could take via a daily capsule, rather than one via a needle. There were some issues to be aware of, and tests and checks to have done first, but the thought of this wonder drug was marvellous and I jumped at the chance of saying ‘No, to the Needle!’

So I went through the required protocol, had my heart checked, and my eyes examined (macular), everything went well and so Gilenya came into my life. This medication went well for me and is still going well, some six years later. I have blood tests done reasonably regularly, to check whether everything is going well (it is), and I see my neuro, to basically talk about how I’m going, and marvel about my good health.

But there are new drugs available, more and more all the time. Perhaps we will talk about them. Or we may discuss my most recent blood tests, and, well I’m not sure what else. I had mentioned possible cognitive issues, the last time I saw my neuro, some four months ago, I think it was. He did a bit of a test to check out that, and was happy to tell me I was cognitively 20/20 or something like that. He may have pointed out that I wasn’t getting younger, and that was normal, I’m not sure.

Anyway, this neuro visit will happen tomorrow, and I will report back on what happens, which I assume will be nothing much at all really, but time will tell. I probably should think of some questions to ask, but what? Who knows. Perhaps I’ll search the internet to see if I can come up with something, but maybe I’ll just leave it all up to him. After all, I may have the lived experience, but he is the expert …

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NDIS Planning Meeting – Bringing a Better Life?

I am one of the ‘fortunate’ Australians with a disability who have been accepted as a disabled person who deserves help from the NDIS. (More about that in the next paragraph). The help I will receive will be decided based on what is decided by me and the relevant person at my ‘planning meeting. The planning meeting was set up by my local area co-ordinator from the service dealing in the area I live in, after I had applied and been accepted.

‘The National Disability Insurance Scheme (NDIS) supports people with a permanent and significant disability that affects their ability to take part in everyday activities.’

This is obviously a good thing, and I am grateful for that. It has helped many Australians with disabilities to live their lives in better ways, by providing the things they need for that to happen. At the moment, I’m still at the thinking about what will really make my life the life I want to live, a life that will bring more good to me. I don’t need a wheelchair (not yet, and hopefully never will), nor do I need more home modifications (these were provided already by Disability SA some years ago). I feel like I’m sort of functional, but could be a whole lot better, a bit like the peg in the photo:

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The peg can hold things on the clothesline still, but it isn’t all that useful … That’s how I feel at the moment, for sure. I can do things, but I’d like to be able to do them perfectly, not in a not good enough manner. I want to be able to feel far more useful to myself and to everyone else.

My medication is working well for me, I’m feeling good, as long as I don’t get too hot, or too stressed. So what do I need for those two things, could that be where I should be looking for help? Well, I have suitable air conditioning in my home and my car. I have a cooling vest (although I don’t wear it because it is too cumbersome and it feels unsuitable). I’m careful to stay out of the sunshine when it’s too hot, and I go to places with good enough cooling.

I’ve had training sessions with the MS Society in South Australia, on the subject of mindfulness, and I have found this has helped me a lot in maintaining my sense of control, and giving me a feeling of serenity, going with the flow and not getting anxious about the things that occur in my life. If things happen that I am unable to chang, I let them go, and find ways for better things to happen instead.

So given that my life is more or less under control, at the moment anyway, what do I feel the need for, to make my life a better, more fulfilled life? Well, I have long had the idea that I want to do more public speaking, beyond the poetry reading related things I already do. I am used to the poetry readings, they go well, and I feel completely in control and not stressed out at them. It’s just something I do.

But to challenge myself, that’s what I want and need, I want to do public speaking in a different way, not the under control poetry reading method, but something where I may not be completely under control, and I may have some questions thrown at me, so I have to think and answer them, instead of merely reading my poetry from my book … Public Speaking is a huge challenge for many people, and they fear it more than death, apparently, some of them. Of course, I read that on the internet, so it may not be true …

So public speaking on any or all topics, done with confidence and style, in a way that will attract others to ask me to speak, and actually pay me money to do it, that is my aim. I’ve done a couple of such gigs, talking about myself and my health issues, or about my writing. These went well, but they were to groups of people who already knew me, and who I knew, so it wasn’t too much of a stretch of my abilities. If I can expand on that, do more of it, more often, and in different ways, that is what I’m aiming at. I’m seriously considering joining Toastmasters, and getting training with them. This is definitely something I could get paid for by my NDIS money, I think, it will go on my list, when I do my initial checklist (which I’ve finally printed out and put in the correct place, after weeks of meaning to do it but leaving it).

Another method of Public Speaking that interests me a lot is Stand Up comedy. I am pretty sure I could combine my skills and put on an amusing little show, if I had some more training in such things. People have been known to laugh at the funny things I’ve said, or the funny poems I’ve read, over the years … So as I said, some proper training and I may become a famous comedian!

Another issue I have that I feel would help me enormously would be having some assistance in decluttering my life. I have a little car I love, but I have (mis)used my little Kia Rio as a kind of mobile office, but in a bad way. It is messy inside and dirty on the outside, I keep on meaning to get it clean inside and out, but it never happens … I know if I could just have someone to help me, I could get my car tidied up and also all of my books, papers, and clothes organised.

From where I’m sitting at the moment I can see book shelves, but also piles of books that should be in book shelves. I can see paper things, almost all of my TAFE workbooks are sitting on their side in a pile on a shelf close to me. I finished my TAFE qualification many years ago, soon after I was diagnosed with MS, which happened eight years ago – there is absolutely no need for those things to be there, so why haven’t I put them somewhere more appropriate? I feel that I don’t know where that ‘more appropriate’ place is. I need help!

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I want to live my life in the best possible way that suits me – not the me I currently am, but the best me possible! Who else is still working to become their ‘Best Me’? I’m interested in what others may consider to be their ‘Best’ …

I’m looking forward to seeing what happens at my NDIS planning meeting, and hope inspiration will be with me, and wonderful things can happen!

 

 

How I Deal With a Chronic Illness

We are born, we grow, we live and then we die. If we are lucky, the time moves along well, with few problems occurring, no major setbacks, accidents or illnesses. But for some, things go wrong. Whether it’s a car crash, or a bad virus infection, or any other kind of mishap, things can happen that interfere with what may have been a good or at least good enough life.

One of those things can be a chronic illness. There are a number of these kinds of illnesses, and sadly for many there is still no real reason about what has caused the illness, and there is no cure, merely treatments. These treatments can certainly help to control the symptoms of an illness, but they can’t ‘fix’ all of the things that have gone wrong, or may go wrong in the future.

MS, or Multiple Sclerosis is one such illness. I have been diagnosed with this illness, back in early 2010. It was both a surprise, but mostly it was a relief, because at least I had a reason for the strange things my body was doing. If I’d realised the full extent of what this illness might bring for me, that relief may have been less, but considering that I’d thought my symptoms were from either a stroke, or a brain tumour, at least MS was better that either of those two illnesses.

MS prompts the person’s immune system to attack and cause scarring/lesions to the Central Nervous System, which then interfere with the way nerve impulses can travel to the brain. The nerves don’t work properly, and so muscles, and a variety of different things can be affected, depending on where in the Central Nervous System the scarring is. There are a variey of treatments, which can bring their own things the affected person has to deal with.

I am currently on a treatment that seems to work well, and I feel more or less well, most of the time. When I think back to myself before MS came into my life though, I have to say I am actually affected by this disease, just not affected as badly as some other poeple are. I am certainly grateful about that, of course. Do I deserve to be OK though, do other people deserve to be seriously affected? Of course not. These things are random, and we all must deal with what we have been handed by life, or Nature or whatever it is that determines what happens.

I have no special knowledge, no special abilities. I am however a calm kind of person who reflects on things and tends not to stress about things. Is this the reason or at least a reason, why I am going well with MS. I also am able to live my life in a good way, stress-free for the most part, and I thank my lovely husband for that, he does most of the things that need to be done around the place. This lets me do the writing related things that bring me joy in life, being involved in a variety of events, helping others with their writing, learning more to apply to my own writing. Fun and fulfilling things.

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I also exercise a bit (I should do more), I eat a good healthy diet with good amounts of fruit and vegetables, a little meat, grains, nuts and so on. I am not overweight, nor underweight, and as I wrote, I have little stress in my life …

I certainly feel this ‘Finding Fulfullment in Life’ is an important aspect of life, and helps me to be so satisfied with my life. Every day is the chance to do something enjoyable, commune with Nature, write a new poem, connect with friends, see family, have a tasty meal somewhere.

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So these are some aspects of how I deal with living with this particular chronic illness. I realise I am a fortunate person, others not so. I therefore can’t say my way would work for all, because I know that isn’t the case. Some people are worse affected than me and so are not as able as I am to do all of the things they like/love to do. Thinking about what are the most important things, and working at doing those though, surely that is worth working toward.

Please feel free to leave me any comments you have …

 

 

Positive Attitude equals a Positive Life?

https://www.health.harvard.edu/mind-and-mood/how-your-attitudes-affect-your-health

The article in the link above is a great one, that says many of the things I believe, regarding having a positive attitude to life. It says that having a positive attitude to life and to ageing can help you to in fact live a longer life, and who wouldn’t want that? Probably people who are hating the life they’re living might not want it, so I guess they’re bringing what they want, then.

If you have a negative attitude to life, and don’t look forward to the great things that are there for you to see, experience, and if you instead get out of bed dreading the passing of the day, every day, well you may well not have to endure you life for so long. But having that attitude is a dreary way to go, that’s for sure.

My general attitude to life is to find the good things and enjoy them, and to find ways to minimise, improve or otherwise make better, the bad things that are there. I am an optimist and am happy far more times than I am unhappy. I also have things planned in my future to look forward to, good things, things that can lead to even more good things. I have great friends, and my family love me. I know I am a lucky person, a very lucky person.

This luck in life I have seems to affect my health as well. I have a chronic illness, MS (Multiple Sclerosis) that can habe many bad effects on the lives of people with it. I have certainly had some of those bad effects, but I am almost always able to have only minimal ill effects from my MS. I am on a medication that seems to work well for me, when many other affected people have far worse results from the same medication.

I have no proof that my positive attitutude is positively responsible for this result, but I’m sure that it helps in some way or other. Expecting things to work well, and being greatful when they do, these are tools to keep myself living a good and positive life. Do you believe your attitude is responsible for how you are, living with MS? I’d love to hear about it, if you do! Feel free to leave a comment here.

What Disability Can Be Like

When a person has a disability, and receives payment from the government, to assist them in the living of their daily life, there are expectations from their family, friends, and the greater community. Some of these expectations are fair enough, others though are damaging and can cause further harm to someone who is already ‘doing it tough’.

If someone can walk five miles on one day, then other people may think they will be able to walk that distance, ignorantly assuming there was no harm to that person, or at least challenges to get over afterwards, for their feat of the day before. This misapprehension is the cause of unrealistic expectations that can lead to blame being laid, and stress caused to the person with the disability.

It is a scientifically proven thing, that stress can cause damage to a person. When you have an auto-immune disease, the last thing you would want is further damage to your body, which is already stressed.

http://www.ulifeline.org/articles/450-good-stress-bad-stress

Expectations lead to unrealistic results, and when these unrealistic results aren’t met, it leads to more stress coming from others, and from the person themself. Being kind to themselves is a much better way for people with disabilities to treat themselves, and also for the people who know them to treat them.

If you see a person who seems to be ‘slacking off’, do you know that is true? Could they in fact be resting so that they are able to do what they want or need to do? Please don’t judge without knowing the truth of it!

For instance, personally, I am quite active in my community and in the poetry world in my part of South Australia. But to be able to do the things I do, I am fortunate to have my husband, who does almost all of the usual things a woman might do every day, in terms of housework, dog walking and so on. He does the hard work so I am able to do the things that bring good to my life.

Gardening, for instance is something I like to do, as is public speaking. clover burrs

me making point at book launchI do what I can, without over doing it, because I have had far too many days after, when I was only able to get up, and go from one end of the house, if that. I have Multiple Sclerosis (MS), and one of the worst after effects I have from MS can be the fatigue that can come from overwork. complete bone-weariness is terrible, and I want to do all I can to avoid that. It is much more that simply feeling a bit tired.

Never assume you know what life is like for a person with a disability. Unless you have that disability, you probably will never know.

I’m Nuts for Nuts!

Yes, I know eating too many nuts is bad for a person, but eating too much of almost anything is bad for us. Probably it would be difficult to overdose on lettuce or celery, but apart from those two, a moderate amount of most things would be OK, regarding food and drinks. When a person has a chronic illness, as I have (multiple sclerosis – MS), eating a good healthy diet is recommended by the health experts.

And of course, nuts, in moderation, for a part of that healthy diet. I did a little research (ie, I googled it) and walnuts definitely seem to be one of the best nuts to eat, in terms of good health. I have had a very high reading on my cholesterol recently, so I am happy to find things that might help to reduce my reading there. Walnuts have been judged as the best nut for this purpose. This is great because I don’t mind walnuts at all. They’re not my favourite nut, but I quite like them.

The only real heathy diet issue I have is that I don’t eat fish or seafood at all. I don’t like it, and it makes me vomit, which is a bad thing to do 😉 – yuck! The thing these foods are particularly good for is Omega 3 fatty acids, so I am missing out on that healthful item in my diet, unless I can find ways to source it from other places. I happy to report that a new herb we have begun growing, purslane, is very high in the Omega 3 fatty acids, so finding some growning locally the other day was a health bonus!

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I only planted a small seedling of purslane, but I hope and expect in a few weeks time, we may well be adding it to our meals, whenever appropriate. Eating our medicine, by finding the good things and limiting the bad things, that’s my favourite way to go with these things. Good and healthy food leads to a good and healthy life, and who wouldn’t want that?

Do you have any thoughts about these things? I’d love it if you left a comment here!

 

That Old “Use it or Lose it” Idea

Yes, when you have Multiple Sclerosis (MS), regaining, maintaining and retaining your mobility are very important things in your life, for most of us with this illness. MS can take away your ability to walk, or walk far, and it affects your other muscular abilities too. Medical intervention can certainly assist with this, and life can go better if or when you find the best medication for your needs. But medication is only a part of remaining mobile, and physical exercise is another and very important part.

When I was first diagnosed with MS, my neurologist early on, encouraged me to walk, to keep as active as I could, and work at walking on a regular basis. He definitely said those very words to me, Use it or Lose it. At that time, I wasn’t able to walk very far, but I’ve certainly kept that thought in my mind, and I made up my own exercise programme, using Wii Fit Exercises. We already had this device, and once I was able to, I got stuck into working my way back to the high scores I’d made previously, before I was hit by MS.

 

I have definitely benefited from these exercises, even though I don’t always do them particularly often. I always know they are there, waiting for me to get myself up to my desired levels of activity. Today, for example, I switched on the Wii Fit machine, ready for at least a weigh in, and a little bit of action! The weigh in wasn’t quite as good as I’d hoped, indicating I weighed exactly the same as I did last time I weighed in, a week earlier. So that convinced me to push myself a little and do a slightly longer workout.

I did a simple muscle exercise going up a level on what I’ve been doing recently, then did another exercise, a balance one, telling myself I had to get 250 points or I had to do the exercise again. This was the Ski Jump exercise, and I thought I’d get those 250 points easily, and then I’d move onto another couple of exercises and then call it a done deal. But I didn’t get those points next time, or the time after, or the time after that! I didn’t give up, I kept going, putting in one good jump and then a rubbish one, or a rubbish one and then a great one … Frustrating, but I kept on going. Eventually I got that exercise done, and gladly moved onto something different.

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I did the Hula Hoop exercise, and got a good enough score, not a highest one, but not too bad. I felt good about that, and kept on, doing exercises I often did, including the basic Steps exercise which takes ten minutes. Anyway, I was committed to exercising, so I kept going, ultimately doing thirty minutes of exercises and certainly giving my body a good workout. It didn’t make hot and sweaty, but my muscles all knew they’d been working, and that’s what I need to do, and so I’m glad I did it. I hope that the next time I switch the machine on, there might be a bit of a weight loss.

Losing weight isn’t a big motivating factor for me. My weight is within the ideal range, but at the upper limit, not the middle, where I’d prefer it to be. A healthy weight is a good thing. No, my main reason to do these exercises every now and then is to keep my body active, as I always work on keeping my mind active. Cognitive skills are important, but I consider myself to be good at keeping my brain active, writing, staying connected socially, challenging myself from time to time, and being involved with all of the things going on around me.

I feel I have the best ratio of activities for myself, and I feel I’m going well with my life!