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 …

 

 

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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.

hula hoop for blog

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!

Mild Autumn Days

We are close to the last month of Autumn, in Australia, where I live. In my part of South Australia today we had one of the lovely mild Autumnal days which I love so much. Gentle breezes, a slight bit of rain early on, and then lovely kind sunshine to dry the clothes I’d hung out before lunchtime.

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(picture by Simon Kneebone)

Hanging out, and later bringing in, a load of washing can tire me out quite a bit sometimes, but today it was a pleasure to be out there, taking care of this task that I now often share with my husband, who is also my carer. I don’t know why it felt so easy for my today, but I know I’m very glad that it was, because who knows if that might last.

The thing about having MS (Multiple Sclerosis), is that you never really know what you’ll be capable of doing, until you’re doing it. You have good days, as I did today, and then you can have the bad days, when simply getting up and taking the full laundry basket outside is too difficult. After having had MS for eight years, I’ve learned to make the most of the good days, and rest up on the bad days.

Having things to look forward to doing, and enjoying lovely days as today was, these go toward more good days, I think. I have a writing related project that is exciting me, and will enable me to do something to help other people who are struggling in another way. It’s a creative writing project, and anything creative writing related is something that fills me with joy. Helping others, and bringing new creative writing into the world, this is blissful to me, it feels like my life’s work.

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This idea of my life’s work is a good one to think about. I know that a full-time job wouldn’t be good for me, it would be too stressful and would interfere with my sleep. I know this from past experience, and I won’t go through those stress levels again, because I hate how my body reacts to that. Weakness and worry don’t go together well, but that’s what I get from stress. This is not something that doing workshops does to me.

With creative writng workshop kind of work, I feel alive, invigorated and thrilled to be doing something I know that I can do, and do well. I’ve done this work in a variety of different places, with people of varying degrees of literacy levels, and it always comes up with some truly special writing from at least some of the attendees. I hope for this, and also healing, for the attendees at my next project!

It’s Autumn time, and my life is going fine!

 

When Good Outweighs Bad

When you can sit down and look at your life, and see that yes, there are indeed far more good things in your life, than there are bad, this is surely when you have a good life. I mean, yes, I have a chronic illness, that has the potential to take away my ability to walk, and be involved in the broader world, that is true. But it is also not a thing affecting me at the moment, and I can honestly say I have a good life, with many more good things than bad.

That chronic illness, multiple sclerosis (MS), is under control for me, thanks to the medication I am taking for it. This medication, Gilenya, doesn’t have such good results for all who use it, but it does for me, and I am grateful about that. And this idea of feeling gratitude, and looking at all of the things in your life your are grateful for, this has become a popular idea for people to rise above the bad and find the good in their lives.

When you look at your life, sometimes it might feel like a mess, with too many bad things to ever be able to uncover anything good. If this is the way you feel, still try. Go outside, see the sky, a tree, a flower, a bird. See Nature doing its work, and feel gratitude for all of the wonderful things that Nature does. Does Nature care? Maybe not, but the wonderful things will go on happening anyway.

When you start looking at the good things to be grateful for (and I recommend you do this often), then you will find it easier and easier to find the good things in your life, and the bad things will fall away to the background, or maybe even disappear completely. This is how the good can outweigh the bad. Good things can help you to continue on with things you have started, while focusing on the bad things may convince you to give up even trying to get them done.

Good things make it easier for you to smile, and if you smile, that makes it easier for other people to like you, and for you to like yourself. More people liking you means more people will be willing to help you if you need help with anything. More people who like you means more friends, and more friends means more fun!

“But more friends means more people demanding things from me,” you might think. But when you are your own best friend, you can value yourself properly, and learn how to say no if anyone asks too much from you, or you can’t go or do what they want, or even if you simply don’t want to do something. Best friends don’t force their friends to do things like that, so being your own best friend, well that’s a very good thing!