How Long is a Piece of String?

The question of how long will I be in remission, is a lot like the old one about the piece of string? How long is a piece of string, well, it depends … It depends of how it’s being used, whether it’s frayed and worn, and so on. Similarly, how long will it be before you might go from the relapsing stage to the remission stage, when you have Multiple Sclerosis (MS).

At the moment I seem to be happily in the remission stage of MS, and have been like this more or less for more than a year. I say more or less, because I have had brief interludes of relapsing, but only very brief times. These are called Pseudoexacerbation – it means your body is feeling fragile and your MS symptoms jump up and hit you. This may be caused by too much stress, getting too hot, having an infection, being overly fatigued, and for some people with MS intense cold and do the same thing. When the cause goes away, you go back to feeling your version of ‘good’.

I work hard to reduce the chance of stress in my life – I try to adopt an easy going attitude to life, and just go with the flow as much as I can. I make sure I can keep cool when hot weather is attacking, as it seems to be in my part of South Australia at the moment. Air conditioning and shade are my friends! I try to not overdo things, and if I have, I know I have to rest until by body forgives me again! above the fish pond

These things may take merely minutes to work for me (or anyone with MS) or they may take a day or so or anything in between, but if it is a Pseudoexacerbation, it will go away and not become a full on relapse, and that is a very good thing! A full on relapse could lead to a brain that has forgotten how to work properly, with memory and cognition almost switched off, with overall muscle weakness, and with terrible feelings of bleuhh…

This current remission I am having is a joy for me, and I am very much hoping this particular ‘Piece of String’ is longer than the length of the journey to the moon and back! Is it because of my current medication, my positive life attitude, my increased levels of exercise (sometimes), or is my body just loving my healthier diet and working harder to fix the damage other parts of my body are doing to me? I love my writing life and if my brain is on the frizzle, I wouldn’t be able to write books and things, like the one in this photo below!

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I haven’t had an MRI for some years now, and one of those would indicate how much damage has been done to my Central Nervous System. And my GP has indicated to me that it would be good if I went and saw my neurologist again, so he can see how well I’m doing on the medication he prescribed for me back in 2012, when this ‘wonder drug’ (for me), became available in Australia at an affordable cost. This drug, Gilenya, is a tablet I take every day, rather than the injectable drug, Avonex, that I used to inject into my thigh muscle once a week. The Avonex worked OK to help with my symptoms, but the Gilenya is working much, much better …

So going back to the original question, how long will this remission last? The answer can only be “Who knows?”. Gilenya may go on working well for me forever, and I may never have another relapse again. At the moment, I’m just loving what I have, and working to try to keep it happening as it is now, with my body able to walk and drive my car and my brain able to more or less do all of the things I want it to do!

This is my happy MS story, and I hope others out there have their own happy MS stories too, I’d be glad to hear about it if you do. And if your story is not so happy, why not share that too, sometimes writing about bad things can take some of the bad away …


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