Total head frak "sorry its not a fare its your new normal" wow not quiet sure how I am gona digest this info, because getting back to my normal is what has kept me going.
So this new normal involves not being able to walk more than a couple of feet without it becoming so uncomfortable I have to stop and sit. A normal that now means I spend between 18 and 20hrs laid on a bed as sitting means, lower back pain, sore scapula regions, restless leg syndrom, painful hips n knees blah blah..
I have noticed a sensitivity to material that is extreme compared to what I am used to. Clothes that where comfortable now cause my skin to itch, seams that hadn't bothered me have become the bain of my life.
Anything on my arms is a no go unless it's very loose, I can't wear anything on my feet for more than a couple of hours sandals, socks even slippers drive my feet nuts.
Have to admit I did LOVE the look that spread over my doctor's face when he gets my depression score out to discuss, its now my 6th year in a row that other than feeling a bit blargh over 'normal things that the general population feel blargh about' I do not have depression !
So no depression and still in mega amounts o pain, puts paid to past dx I have had that its my depression causing my pain, that the pain all stems from my negative thought process *pokes tongue out and blows a fart* !
I was depressed when I first got sick because no one knew what was wrong with me. Being told it was "all in my had' and "I was the sole cause of my own pain" only intrenched the depression further.
Also the fact that my doctor when I got my dx of Fibro treated me for depression and pain not just one or the other (iv noticed to many doctors only treat for depression yet give no pain relief then wonder why the depression lasts for so long) !
Since my Fibromyalgia dx 8yrs ago (had it for 11yrs) a new set of doctors, some understanding, self education and the desire to live as best I can, I have come out of the depression. Don't get me wrong if I have been in a severe flare for along tme I do feel blue, a bit down, emotional, but its 'normal' . What hasn't happened is a slide back into oblivion
My first concern for myself when doc told me this my new normal was 'shit I don't wana go into a severe depression' cus I have dipped into 'down' but not dpressive episodes - the thought of a depressive episode frightens me.
I don't know what my future holds for me all I know in the now is I have just found out there is a new me that yet again I am going to have to get used to, learn my now capabilities, my new boundaries, not dwell on what I can no longer do. Its time to adapt and change again.
Getting the dx of Dercums Disease running alongside my Fibromyalgia and me having a few months to get my head round it has helped a bit because I understood what the word 'progressive' meant, also that in the last 3yrs my health has declined (slowly) so much was explained by the new dx. Which has led to better pain management from doc.
The "this is your new normal' has put me on my asse with a bang. But it is my truth now and one I will try to deal wth in the same way I have tackled having fibro, with defiance.
My head did do the 'I'd be better off dead, I don't want to live like this' but just for briefest time as although I may at times feel useless (inc having to quit one day I work as I wasn't coping with the stress) I realised that just being there emotionally for my friends, husband, cihildren wasn't a thankless job.
I know the stuff I post on Twitter helps people, my kid sis (little cousin) reminds me often that she couldn't imagine not having me in her life, the bonds I share with my children are something I am most proud of (even if we do clash and some more than others).
So I do have a place in this world I am able to emotionally support people without judgement or advice, by allowing them to be autonomous - so while my body may have hit the end of the road my mind hasn't.
Until my brain/mind does go I shall live knowing I d have a roll to play, a place in people's lives. Hopefully when the mind goes it will do so to the point I won't remember nor care.
In a very similar place right now. Not sure I can bring myself to write about it, but maybe it is helpful for both of us to know that we are not alone.ReplyDelete
Thank you for your lovely comments :). When I write about it, it normalises it for me, just seeing my reality there in print helps me with accepting what has happened n as much as docs don't wana agree that Fibro is progressive I believe very much it is :) xx GeorgieReplyDelete