MS and Needle Fatigue

I hadn’t heard of the term ‘Needle Fatigue’ until today, but as soon as I saw the phase, the feeling struck a nerve. Needle fatigue is the feeling you get when you’ve been dutifully and regularly sticking yourself with a needle, as required to deal with your MS, but your brain suddenly screams at you – “NOOOOO!!!!!!!!!!!!!”

You may have been jabbing yourself every day, every other day, every third day or once a week, but you suddenly DO NOT WANT TO DO THIS ANY MORE! Or you may be able to get onto an oral medication instead of one of the injectable ones, and when you take your little pill, instead of doing the injection, you are almost overwhelmed by a huge sense of relief that the injection regime is finally over.

I was on the weekly injections, Avonex. I’d surprised myself when, after diagnosis with MS (Multiple Sclerosis), I was actually able to give myself injections. When my neuro had first said I should take one of these medications, I opted for Avonex, because I felt once a week might be possible for me, but no way could I do it every day.

I was a brave little possum, and stuck at the weekly injections. Sometimes they hurt a little, sometimes a bit more and sometimes there was no pain at all. Every needle day, I’d get myself ready, get the needle ready and once it was at room temperature, jab myself in the thigh. It quite quickly went from scary to almost commonplace.

Needles and me weren’t good friends before the start, and I had joked that I’d never be a junkie, because I hated needles so much. But the needle and I became, if not best friends, then at least working colleagues. My MS went from bad before medical treatment, to controllable, if not pleasant, with treatment. I was grateful to Avonex for that control. And then things changed. Suddenly, there was a new treatment for MS. Not a needle, but a little tablet that you took once a day, and it would help you control your symptoms. This medication was Gilenya.

I was excited, but I wasn’t due to see my Neuro straight away, so I waited. When I saw him and he suggested I give this edible med a try, I jumped at the chance. Yes, I was free of the needle! I remember giving myself my final injection, and oh my, the relief of knowing I would never have to do this again was amazing! I hadn’t realised how much I was stressing about this treatment, until it was over. I stopped Avonex and had a period of not taking anything, from memory, and then started on my wonder drug, (I hoped).

I began Avonex in 2010, and finished it in 2012. In that time I learned a lot about MS and the intricacies of injecting myself. And I learnt a lot about what I could do, which was more than I’d thought I could do … My life has changed, because of MS. In some ways the changes are bad ones, but a surprising large number of the changes are good ones. I am proud of the person I am with MS, a brave person who is less afraid of many things that I may have been in my pre-MS days.

Those of us with MS have different symptoms, and take different medications. What works for one, may not work for another. All we can do is try treatments and hope for the best. For me, Gilenya is the best, for now anyway. There are new medications coming out all of the time, so who knows how long I’ll stay with this one. Another visit to my neuro is well overdue, so I’ll make that appointment sometime soon, and see what happens …

Be Happy Wherever You Are

If you spend hours dreaming of being in a better place, you may be wasting your time. Many people who have their health, a home and people who love them forget about those assets, and waste their lives dreaming about how to get a better life.

And conversely, other people may dream of being able to have the life you currently have. If you’re not happy with your life, the first step you might take is to list what you want in life, and then list your assets.

You may be surprised to see that the things you already have can,  in some ways, give you what you think you want.

Do you want a house with water views, and gorgeous art works, but all you have is a job where you have to catch the train into town, and no money for the artworks.

If these were my list items, I could change them around and realise I already have access to the things I said I wanted – not a home with water views maybe, but the train ride might take in lovely Nature views in part. And even if there were no artworks in my home, there are galleries around South Australia I could visit including the lovely big one in Adelaide, where I can look at gorgeous paintings any day I want to.

It all comes down to the idea of  “Change your attitude, discover your life”. Think hard about what you have, and see if you can look and see how those things can be seen differently.

Happiness isn’t something others can give to you, there isn’t a course you take to get happiness. Happiness is inside of you already, but you can’t see it because the happiness is drowned out by all of the other things you have and do, trying to find the happy life you want to get.

When you look at the life you have, you might discover you already have the life you want. If you have family and friends who care about you, you have treasures aplenty!

Multiple Sclerosis Cure! Not

When I see yet another ‘cure’ for MS, I don’t get excited and I don’t rush off to get myself whatever is the new contender in the MS Cure race. I usually shrug and continue on with what I was doing. Is there a cure for MS in the future? Probably. Will it happen this year? Probably not.

The problem with these so called cures, is that the time from the initial discovery, to the final pill or potion that will cure those who have whatever it is a cure for, that time can be many years before this so called cure actually hits the market, when sufferers can be cured. The most recent one that came to my notice on Facebook looked slightly better than some of them I’ve seen.

But even with it looking slightly better, in that there is a reputable university involved in this ‘cure’. But that university Cambridge) is at the stage of looking for funding to help further develop the idea, and they don’t even expect to begin actual trials until 2020, which is three years away. So no, I’m not holding my breath as I wait to see what the results are.

And curiously, Cambridge University also seems to be doing work on Stem Cells, another ‘miracle cure’ for MS so I’m wondering whether the two so-called cures are going to run into troubles over which ‘cure’ is actually a cure at all. Am I skeptical about these things? Yes, of course I am. What thinking person wouldn’t be skeptical?

If I got over the top excited over every piece of whizz bang miracle that came out, I’d quickly run out of puff. The internet brings us ‘amazing’ things all of the time. Today I saw the miracle ‘black lion’ one again. This black lion supposedly is black because of the melanin in its body doing something or other, and making everything black instead of the more usual colours. The truth is that the miracle is in the work involved in changing a picture of a white lion, which is actually true, into a picture of a black one, digitally changing the colour. Clever work, but not a miracle at all.

I like science quite a bit, and I’m open to the idea that amazing new things can happen, but the more I see quackery and cons, the more I tighten my skeptic hat, so it sits firmly on the top of my head … Birds are miraculous, baby creatures of any species are miraculous too. And ideas and medical breakthroughs can happen too, I accept that. If someone looked at me, and the way MS is for me, that may even be a miracle, you never know!

I’m not in a wheelchair, I can get up and run, I’m not blind, I have reasonable muscle tone and I’m able to do things that most other people can do, what a miracle! Well, not really, I think I’m just lucky that my medicine works for me, and my lifestyle isn’t too arduous for me. If everyone with MS was able to do whatever they truly wanted to do, we’d probably call that a cure, that’s what works for me!

Does anyone have thoughts about these so-called cures, leave a comment, I’d love to read about it!

What to Say to a Person with MS

If you meet someone, and they tell you they have Multiple Sclerosis (MS), what should you do? Hmm, the best thing to do first is to say hello! Don’t feel sorry for them, don’t tell them about your sister’s next door neighbour’s cousin who cured themselves of MS, and certainly don’t assume you know more about the disease than they do.

I’ve know I have MS since 2010, and probably had it for five or so years beforehand, according to my neurologist. I have suffered from these ill-informed responses quite a few times in my ‘career’ as a person with MS. Having MS can be a terrible thing, it can be a trial, an irritation, or sometimes it can be a little bit of not much at all. It all depends on how the disease is going for the person, what their situation is regarding how they’re coping, what the weather’s like, and a large variety of other things.

I have MS, but I would never assume I know more about another person’s experiences than they know about how it is for themselves. I’m doing well with my current medication, Gilenya, but I know other people who did badly with it. I also know people who are on a medication I’ve been on, and they’re doing extremely will with it, whereas I only did OK with it, rather than extremely well.

I think the best thing to do if and when you meet a person with MS is to let them lead the conversation. Some people are happy to talk about their MS situation, others are bored by such talk, and still others don’t want to discuss it at all. That’s the thing about people, they’re all different, and with MS, peoples’ experiences can be all different too. When you have a disease that differs in the symptoms, depending on where in your body the damage has happened or is still happening, the symptoms can all be quite different.

Some people with MS suffer from Optic Neuritis, but I have no problems with my own eyes from MS, apart from being short sighted. Other people suffer from pain, whereas I would say I only suffer pain when I fall over! And that’s one thing most people with MS will agree with, they fall over more than people without MS. I also like to talk to people, so will happily launch

So, if you meet a person who has MS, why not just say hi, maybe talk about the weather to start with, and just see how the conversation goes!