Why now?

This November I turn 40. When I turned 30 I drank as much champagne as I could possibly cram into my body. This year after voluntarily allowing some clever doctors to destroy my immune system in the hope that it resets itself in a much more healthy way, I will be instead drinking some god-awful curly kale/beetroot/anchovy/soil combo with my brand new Nutribullet.

I first started writing this blog a year ago. Actually I started writing it in my head about 5 years ago. When it was all different. My body was working really well in spite of a fairly dramatic “attack”10 years ago which affected the whole of the left side of my body. Lots of yoga, swimming, rest and good diet helped me recover really well.

I think.

MS is such an unpredictable disease that no one really knows how it will progress, and as it is so different from person to person, and day to day, it really is a bit of pot luck. I definitely see myself as one of the lucky ones. 10 years on from my first episode, and I am still cycling, teaching yoga, swimming, looking after my 2 little munchkins (and the original big hairy munchkin) and running a very happy (and terribly messy) household.

For this reason, I wasn’t ready to write about MS 5 years ago. I was too busy ignoring it.

Unfortunately after a fairly long and horrible relapse about 2 years ago (which caused permanent weakness in my right leg so that I am now only able to walk for a short bit at a time before it gives up) I had to start thinking about my options. A meeting with my neurologist made it clear to me that I do really have MS (I sometimes think I am dreaming and it’s not real) and these symptoms are unlikely to disappear, and are more likely to worsen if I don’t do something about it.

Like NOW.

Luckily for me, some really clever scientists have made some incredible discoveries over the last 10 years and as a result, there are new treatments now available which could potentially change my life.

So that has been the big step forward which has made me write this now. I recently had to decide which medication to start taking. Something I was hoping I would be able to avoid altogether as long as I was still practising yoga, living healthily and staying calm and rested.

Unfortunately it turns out that it’s quite tricky to maintain enough of all of those things as a mum of two with MS and regular periods of fatigue. Especially if you run your own business, care about the state of your house and whether you make sure your hair is passable (or at least tied back) before leaving the house. (I am kidding about the hair. As all of us with children know, hair and hairy legs are the VERY LAST on the list. Poor hubby….!)

So as someone who reluctantly takes paracetamol in the interest of staying as clean and natural as possible, I managed to very much embrace the idea and we narrowed it down to the following:

  1. “The Gentle One” aka Tecfidera. A daily pill which after 3 months or so of temporary side effects, is pretty chilled out and reduces the relapse rate by about 50 percent. Amazing and a great option.
  2. “The Big One” aka Lemtrada. As its’ name suggests, this one is a bit more brutal. This one requires a hospital stay, monthly monitoring for a few years, and carries with it a risk of much more serious side effects. But if it works (it works for about 50% percent of people), it can pretty much stop relapses and noticeably slow down disease progression. Wowzers!
  3. The “Why would I Inject myself daily for the rest of my life when I can take a pill” one
  4. The “Weird one which is a monthly infusion with a high rate of relapse reduction but for some unknown cosmic and defiantly unscientific reason neither my husband or I really like the sound of it and have dismissed it despite not really understanding what the good or bad points are” one.

Aah. Decisions, decisions.

*relapses can be incredibly debilitating due to an intense fatigue, and can also cause more distressing symptoms such as numbness, weakness and pain in the body which doesn’t always recover completely or at all in some cases. Symptoms and relapses vary from person to person and episode to episode.

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2 comments

  1. Gina Hardy · October 3, 2015

    OMG Lynne….I find this such an acute window into the reality of what you are going through and I am sure daily. I have never really spoken and asked, because I guess I am trying to be polite and ‘not mention the MS’. My stuff really darling. Part of my heart breaks for you in all honesty….WHY THE F*UK is my darling friend going through this, then the awe at how you are dealing with it all. Being real here helps you…NO DOUBT….and others. Being REAL is SO incredibly important when writing about this, because there is no hiding or dressing up the crappy bits…its about being with this and letting every emotion be here. So prouda you. The right decision is always decided and all you have to do is just feel it….BUT heck easy for my to say.

    Am thinking about you loads right now….no advice…just love and I do love you so much
    Gxxxx

    Like

    • Lynne Jarrett · October 3, 2015

      Thanks Gina. You can always ask me about it. I want people to ask about it so that more people fully understand this weird and confusing disease. Love lots my gorgeous friend. Can’t wait to see you when I am back in the land of the living. Big hugs and love to you and Joel and hope Greece is fabulous xxxx

      Like

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