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Sunday, January 16, 2011

A (celebratory) Heads-Up

Long time no Blog! 

In case I still have the odd reader I thought I'd chat a bit about what's been happening.

It’s no secret that 2010 was a painful and difficult year for us even before it was taken over by my MS-sy stuff. Graham and I were both determined that the New Year would be exactly that - a New Year. 2011 was going to be different - MS-wise, if nothing else. 

Well, 2011 is going to be different - just not in the way we'd hoped.   We've learned that my MS (particularly the way it was last year) isn’t ever going to change. Love it or hate it, I'm stuck with it (as it now is) for life.

What's to celebrate?

We’ve finally been given some concrete answers from my new-to-me neurologist. My recent appointment, even with its heartbreaking news, is also a cause for celebration:
  • We now have a genuinely, caring neurologist. After 11 years I didn’t think this was ever going to happen. It has. <3
  • We're now dealing with the facts about my journey with MS. I’m no longer being treated as a ‘text book case’ or being compared with others who have the same neurological condition. : )
I’ve always known that my MS journey and experiences are not the same as other MS-ers. We may share the same label and even symptoms, but we’re still individuals. We can empathise with each other but we all need to find our own route for coping.
  • I'm now having appointments with a local MS Nurse - who has a close working relationship with my neurologist. Said nurse will also be at the end of the phone if/when I need to speak to her. <3
  • I can now see the neurologist when I need to - not  merely 'go through the motions' of yet another pointless examination/scan without any answers and support. <3

I’m now accepting that:
  • I do know my body (and always have done). : )
  • We've received affirmation that there isn’t, never was, and never will be a magic treatment or cure - for me. And, no, that isn’t being negative. It’s being realistic (permanent scarring likely occurred some time ago!).
Let me point out here that I’d gone to this appointment determined to offer my services as a human guinea pig for trials and medications. Last year my breaking point was when I realised that I couldn’t fight the MS on my own any longer. Not only did I want help but I was demanding it! I didn’t want to be proved right... 
  • My dizziness/vertigo will be here for the rest of my life. As will the fatigue and numerous other symptoms.
So, as you can imagine, there's a lot going on for me/us to process and adapt to. It's such a relief to finally be able to deal with FACTS. To be told that I mustn't feel guilty for this, this and this. Also, to be reassured that I've been doing (and in one case not doing) the right things is just what I needed.

Emotionally I'm already feeling tonnes better. It is what it is, but there are things I CAN work on. A case in point is:
  •  The best thing I do is to use my walking stick. <3
  • The worst thing I do is use my walking stick AND Gray at the same time. : (
How amazing is it to now realise that when I use my stick my brain is being trained to give me more balance because it thinks I have three legs!!! When I also use Gray as a prop (with and without the stick), little did we know that I'm sending confusing signals to my brain! No wonder I'm often wobblier!  

It's going to take some getting used to, for both of us, but we're allowed to still have romantic walks from time to time so we're good with that. <3 : D 

3 comments:

Cara Cooper said...

Glad to hear you have a good neurologist at last, it can make such a difference to have the right person looking out for you. And that your MS nurse and the neurologist are talking. I work in mental health and know that so often one person does not talk to another - they talk about trendy things like 'joined up' treatment when in fact it's just common sense and often sadly lacking! Good luck with the writing.

gaelikaa said...

I hope you'll be able to get blogging again, Sue. You're getting better and making progress all the time.

Thanks for putting me on your blog list. I had to shut down "Out of Ireland, Into India" as I found it difficult to maintain more than one blog. I tried to merge the blogs, but owing to a blogger glitch, I was unsuccessful. I'll be periodically reposting "Out of Ireland,into India" posts on "gaelikaa's diary" from time to time while trying to keep "gaelikaa's diary" updated.

xxx

Susan Rix said...

Belated thanks for your support, Cara and, for sharing your own experiences - I can totally relate!

Hi, Maria, thanks for your support too & for the advice about how difficult it is to merge one blog to another - why must I always add more complications for myself *grr to me*?!!