Early Days

Early Days
Yesterday I went to see my neuro-immunologist.  I was really thrilled to be able to show him what has happened to me since I started my new treatment.  He, in turn, was enthusiastic about recommending IVIG or Rituximab to try to address the unknown antibodies that have been wreaking havoc in my autonomic nervous system for so long.

What a foreign place I find myself in, here in the land of the well. Yet, utterly changed from my years in the wilderness.

I hear small whispers in my ear. “Be careful”, “Don’t overdo it,” “Choose your activities carefully,” “Do everything while you can,” “It’s now or never”.

I am more hopeful than I have been before, because we have found strong indicators that my problems are auto-immune.  But there are equal parts fear and doubt.  I guess you can’t be sick for as long as I have without being afraid that it will all come crashing in again. You can’t take feeling better, for granted.  And because I don’t fully understand the science, I worry that I might be duping myself about it all. Maybe, somehow, I’ve convinced myself I am getting better. And that willpower will only carry me so far?  It is a ridiculous thought, but there nonetheless.   I have thoroughly examined my sanity, I have canvassed my doctors and my nearest and dearest.  Apparently, I am sane. I just need to find a way to rest in this current state of relative wellness.

And then; there are the others. As each new day arrives and I wake, swinging into an upright position and moving to the bathroom with ease, I remember. How waking used to feel like I was drowning. I remember that for so many of you, it still does. And the burden of your illness weighs heavy on my heart. How can it not?  I know your suffering. I know that for you, it carries on. And I try to fill my day with every little thing, for you. For me. For the unfairness of it all.

I am in this place of plenty, but I have forgotten the language of ease.

I can’t make it through a grocery shop without gushing to the checkout attendant.
“How are you?” she asks, because it is part of the script.
“Oh, I am GREAT!  So good, like, really really wonderful!”  I grin. And she eyes me with suspicion.
I can’t help out at my kids’ school without giddily and sincerely responding to thanks.  I yelp, “My pleasure!”  because it really is.  Maybe it raises some eyebrows. This happy girl I am. Maybe it causes discomfort.  Maybe it seems over-the-top.  But it is not.

This life, this ease of moving, this chance to do things and be part of things.

If only you could feel how I feel.

I asked my specialist yesterday if he thought it was reasonable to expect this good run to continue.
“It’s early days” he said.  And I thought, in my stubborn way, that early days are always followed by late days and all of those days together make up more days of good than I was having before. And I shushed the whispers in my ear and skipped out to the car. The hubster commented that the last time we were parked in this carpark he’d had to help me to the car and get me into the seat.  I swung my legs into the footwell and grinned at him.  We drove home, my hand on his leg.

My heart in my mouth.

Please, please let this continue.  I promise I won’t waste it.  Not one second.



6 thoughts on “Early Days”

  1. Rachel I am so happy for you. I am beaming ear to ear as I read your words. I understand the feeling of wellness after being sick for so long and I haven’t forgotten what it was like to be sick. For me you always remember, and I am sure you will too, and I am in remission for now and sometimes I dwell on the “what if’s” and then I think – no I won’t do that – just enjoy everyday, just enjoy being your happy self, let all your happiness spill out of the lovely heart of yours Rachel. Do what you want and when you can, just enjoy. I have learnt though for myself that I can’t push my body like I did, thats the only caution I would say….for me thats not burning the midnight oil, getting plenty of sleep, reading books when I have some down time and letting my brain escape from the world, doing as much as you can of what ever is your bliss, enjoy simple things like blue skys, mountain views, fresh fruit from the neighbours, cake and tea with friends. The more I simplify life, the more I find it works for my body and life and mind. Just enjoying the moments we are in really. I think our bodies are great at telling us if we are over doing things, so you know yours so well – do whatever makes you happy and fulfilled. xx

    1. I have been finding it hard to slow down, and then crashing. So much to catch up on. So much to do! But your words of wisdom are very timely, Nat! Thank you. I will do some blue sky contemplation today! 🙂

  2. Dear friend – I am so happy to read these words of joy from you. You write so beautifully about that feeling of coming out of the darkness and recognizing the wondrous feeling of “just doing”. How to explain to someone who has never had illness what it feels like to be able to stand up without worry of falling down? I understand the natural feeling that you have – that “whisper in your ear” of waiting for the other shoe to drop, but this is the time for living just for today. If that shoe is to drop, worrying about it now won’t stop it. All it can do is stop you from enjoying your moment now. Live the hell out of it girl! Do it for your hubby, your children, for our whole community who still suffer but most of all, do it for YOU! Life is calling and I LOVE reading how well you are listening. God Bless

  3. This is great news, could not of happened to a nicer person.
    You have not only helped so many people through the dark side most don’t want to face, but done it with uplifting attitude that puts a smile on faces.
    iVIG and or plasma exchange made it possible for my 2nd escape from dialysis, funny (well not but you know) both our new lives have been due to this body product.
    Enjoy everything life is short even without issues, you are strong get out there, who cares what people think if your happy.

    1. I couldn’t agree more! There is such a freedom in understanding that this life is one chance. We have got to make the most of it! Maybe age is making me feel that way too, but I definitely care less about what others think. And I am definitely happy. Spot on, Pete. 🙂

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