I have MS

Sitting and waiting in my 6 monthly routine neurology appointment makes my stomach turn. What has gone wrong this time? What new lesions will be lighting up my brain. The longer I wait, the worse it is and my neurologist is reliably an hour late. When I’ve driven over 5 hours to get here I have nothing to do but wait, and if I walked out, I wouldn’t learn my fate.

Two years ago I was diagnosed with Multiple Sclerosis. I had been having excruciating back pain, most days would end with me lying on the kitchen or lounge room floors. My walk got funny, a gait, my legs wouldn’t do what I wanted them to. So I went to a physio, then an osteo, a spiritual healer and finally my GP. Who almost without skipping a beat, sent me to a neurologist.

Multiple Sclerosis is a funny disease, presenting so differently amongst it’s prey, it’s often hard to diagnose. It’s an auto-immune disease, where the immune system attacks itself and eats away at the protective covering of nerves. ‘Lucky’ for me I was a text book case, after a lumbar puncture (seriously one of the most un-fun things I’ve ever had to do) and an MRI, and the 6 weeks I waited, before my diagnoses, to be informed if I had a benign brain tumor or MS (yes, that’s what my neurologist said to me. Sometimes smart people just aren’t that smart), my diagnoses was certain.

The painful back was mid-flare up, when things are particularly nasty in the life of someone living with MS. How does my MS present day to day? It varies. One day I can be relatively pain free, the next I need to hold on to things (benches, backs of seats, the wall) to help support my walking. Extreme temperatures effect everyone’s neurological path ways, particularly those with MS, so my symptoms are exacerbated when it’s hot and find that the cool change usually brings a ‘hot day hang over’ when I almost feel worse. Some days I have a sore back, some days my legs ache, some days I feel ok but my walk looks not-quite-right, and I’m always tired. My balance is terrible and standing for long periods of time doesn’t work for me. I squat a lot, and subsequently my staff teams have all gotten really good at it.

Work, you wonder? How can I possibly be running an Outdoor Education center with MS. With really bloody amazing support. Jay, there isn’t enough ways to describe how he helps me. Our 3 sets of staff teams so far have been so understanding and helpful. And our council (Wollangarra is over seen by a board), are super supportive and know that I’m capable of doing my job. Which is, honestly, mostly admin. I spent a lot of time sitting in front of a computer, and a lot of time sitting and talking to staff or community members.

How do I manage it? I take medication twice daily. A drug called Techfidera. It is an immunosupresent, stopping my over active immune system from attacking myself. The only side effect I get is a ‘flush’ (hot red face, décolletage and upper arms, and itchy like I’ve been sun burnt) if I eat anything sweet after taking the medication. I use essential oils, of course. And I take DoTERRAs LLV supplements. I try to watch what I eat as much as I can, but don’t stress about it, because along with extreme temperatures, stress has the biggest effect on anyone with MS’s symptoms. Apart from that, I just get on with life. I take it easy when I need to, I enjoy wine, cheese and cake, I use oils and dance! I have an outrageously supportive group of people around me, on the end of the phone, to come to appointments, and to chat about it when there was so many question marks. Gosh, my Mum and Dad have been bloody amazing!

Why now? Why tell everyone now? I haven’t told many people I know IRL. It’s been something that I’ve had to learn, understand and see how I could cope. I really didn’t want people feeling sorry for me, while I was still feeling a bit sorry for myself. I wanted to prove myself in the job of my dreams, before people judged or assumed that I couldn’t. So now it is, I’m sick of not talking about it, I’m sick of keeping it a secret, and I also thought there might be someone out there who this story might connect with. I mean Selma Blair has given me all the courage, and it would have been nice if there’d been someone who I could relate to when I was going through the messy start.

So, that’s me. Well part of me, a pretty significant part really, because although you can’t see it, I feel it every minute of every day. But I’m good, and I’m loving/living life. I’m happy to talk about it, so if you see me, feel free to ask, or curious, send me a message.

7 thoughts on “I have MS

  1. God bless you in your life Claire. It just goes to show you that everyone of us have something to be grateful for!

  2. Hey Clare! Good to hear you are managing your MS. For me, it was optic neuritis that set me on the MS discovery path. Fortunately this raised some pretty strong alarm bells for the medical professionals so within about 72 hours I’d had an MRI, seen the lesions scattered throughout my brain, and was on a steroid infusion to bring down the inflammation and save my eyesight. After being on gilenya tabs for four years I’ve now changed to a six monthly ocrevus infusion. I cross my fingers this will stop it progressing any further and in the meant8me I eat healthy, walk and continue my nearly 20 year yoga practice. And I think about all the books for the MS readathon and how the money raised is helping me today!

  3. Here walking this journey with you amazing Clare, and really looking forward to spending some time together sometime soon xxx

  4. Clare, I read your post with awe. Your courage, acceptance and the support you have is just amazing. Sending you many hugs xxx

  5. Clare, you are brave and strong beyond words. I’m at a loss to find the right ones because I understand the seriousness of your diagnosis but I also want to cheer you on, because you’re amazing. I’m in awe, I’m amazed, and I have the utmost empathy for you and your family. Lots of love and strength vibes coming at you. Keep writing, keep living. <3

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