Monthly Archives: July 2019

Why Disability is not the End!

Yes, I have MS, that is true. But I have a fantastic Creative life, with many exciting things happening for me, and my creative friends! I have other friends with various disabilities, but I also have an awesome group of friends who help me to do awesome things. My MS is not a part of that group’s interactions, although most of them know about it.

Instead, I go about living my life in the best and most interesting way possible I can, doing my thing, sometimes scaled back somewhat, but still creative, interesting, and yes, awesome too! I am the President of a fantastic writing group, who do awesome things, and as long as I don’t have to stand up for too long, I keep on keeping on, with them all!

I have a good range of other abilities, which more than make up for the ‘disabilities’ I have. Fortunately, my actual disability level isn’t as bad as it could be, but I’m sure that is because I work hard to make sure I don’t get too tired, or too stressed. A good gentle, but inspiring life, with lots of great things to look forward to is my way to a great life.

I feel sorry for everyone who is not as fortunate in their life as I am. Writing and being with others who love writing is one of my favourite things in life, and when I can do that, I am one happy little disabled person, sitting with friends, chatting, writing creatively, reading out my writing, joyful times!

I have a great life, and wish everyone could find as much joy in their lives too!

New ‘Normals’

One thing many people don’t realise is that people with a disability or injury, may never return to how they were ‘before’. How they are right now, may be as good as they’re going to get, and that is their new ‘normal’. Expecting them to be how they were ‘before’ won’t help and is likely to be a hindrance, bad for them, for you, for everyone.
I’m not writing this as a woe is me thing, because in fact I’m going well, compared to some other people living with what I have, but that is not something I can rely on staying that way, and I am a lucky person, with plenty of people who help me to live a good life, with Multiple Sclerosis.
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Many other people with this disease are struggling, with no real help from anyone, and I feel for anyone trying to live their life like that, because if you have MS, stress can make everything so much worse. I have my husband, my family, many good friends, and some absolutely great friends. I also have the NDIS which I will be using more often, later in the year.
I am able to do do many things I love to do, and this is definitely an important aspect of why I’m doing well. If I had had a full time job when I was diagnosed, particularly if it had been a job I loved, but was getting harder and harder to do well, that would be a very stressful thing.
I had more or less retired from ever having a full time job and have been happy doing volunteer things related to writing, as well as being a freelance writer in a (very) casual way. This means if I don’t feel up to doing something, I don’t have to do it, almost always. I can make a bit of money from my books, or from doing online surveys, which I have a silly love for! These little bits of money help me to feel worthwhile, financially, and my volunteer things help me to be useful in the broader community.
These are good things for a person with a disability. Feeling useless never helps anyone, and doing things (as long as they are still enjoyable and feel good to you), this is a great positive thing, that brings on feel good chemicals in your body, endorphins. When you help other people, or when others help you, you can have a release of these good chemicals in your body, and feel good, for hours afterwards.
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And while these are good things, they are not going to bring back to where you used to be, if, for instance you have MS, as I do, or have for instance an acquired brain injury. The best way to go with people dealing with these things is to talk with them and listen, actively pay attention, and try to understand what their ‘new normal’ is. These people will know themselves better than anyone else will, to a large extent.
If someone says they can’t do something because they’re not feeling like they can, believe them. Don’t cut them off, but don’t harass them either. Just because they did something one, day, doesn’t mean they can necessarily do it another day. And just because they didn’t couldn’t do it one day, doesn’t mean they won’t be able to do it another day. Just ask, they will know better than anyone.
So I have a good life, I understand my abilities and my limitations, and I do my best to extend my limits as much as I can. I am living a good and worthwhile life!

Another Good Day

I don’t know why I have the good life I have. I look at what I’ve had in my past, and can see times could easily have gone bad for me … My health has been OK for all of my life, really, up until things turned around, from OK to potentially bad.

In 2010, I had a collapse of sorts, feelings of weakness, and a fall, as well as mobility problems, walking, tripping and almost falling, and then actually falling. I was fortunate that my family was there on that first day, and I was able to get the medical help needed.

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It’s been a learning curve though, learning to live a good life with MS. Medication, getting over a fear of needles, learning to care for myself, what things I could do, and what I would have to cut back on, or cut out, at times … Much learning from considering the truth of my situation.

I have a good life, no a great life, actually. Good family and friends doing great things, positive things, outstanding things even, at times, working with my own abilities, and with others helping out too. The world is made up of good, bad, and indifferent things. I look to the good things, and work toward removing the bad, as and if I can. Indifferent things are what I am learning to ignore, if they have nothing to do with me.

Stoicism has come into my life, and I am realising that many things that happen don’t actually have anything to do with me, and if I leave them for those who are actually involved in them, not me. Why bring on other people’s problems if it’s not your business?

And in my thoughts about Stoicism, I am realising my natural attitude to life is a rather stoic attitude anyway, before I even truly knew what it was, and where the term came from. Things happen, I deal with them in the best way I can, a way that is good for me, and further, good for others if they are involved too.

Making the world a good place is surely a fine thing to do, and if I can play a part in doing that, woohoo! Having a role in life that takes me above and beyond my chronic illness, so that I don’t dwell on any of the worse parts of my life, but instead thing on and act on the better parts of my life, these things are good for me. They’re probably good for everyone, actually.20190708_142457

If you have a chronic illness, it is only a part of what and who you are, not the whole thing. I realise other people with Multiple Sclerosis are facing a much tougher life than I am, but I’m still of the opinion that thinking only about the bad stuff in life is never going to bring you a better life. Deal with the bad stuff, embrace the good stuff, live, learn, survive, and THRIVE!

 

If any of this sounds like a good idea to you, leave a comment, I’d love to hear from you! And take a look at my other blog, the Stoic one My Stoic Life, who knows, it may strike some chords with you, the way the ideas did and do with me!

 

Doing MS Meds Differently

It always surprises me when I read other people (usually from countries other my own, which is Australia), don’t understand that there is a protocol regarding the MS medication Gilenya, regarding how long you can go without taking it, before you have to go through the initial process again.

That process isn’t an onerous one, but it takes most of a day, from beginning to end, with regular checks on the heart rate regularly over the 6 hour process. I don’t think you need to go through the eye checks the second time, before being allowed to begin taking it again.

Whether you do or not, I would certainly not consider stopping taking Gilenya, not unless there was an extremely bad effect from it.