I thought it was the dish that ran away with the spoons?

Well, in the nursery rhyme it is but for me it's POTS!

Click this for an explanation of POTS

And this for an explanation of SPOONS

Wednesday, 13 January 2010

Mourning who I could have been... celebrating who I AM

Written on December 17th originally. Reposted here.

It seems strange. I know I’ve been ‘not right’ health wise for years, but it’s like it’s finally hit me. I’d learnt to live with it and pretend everything was fine but this year has made me realise, it’s not fine. I can’t push myself and act like I am ‘normal’ when I’m not.
So I’m sad, for the loss of that person who I could have been. If I hadn’t gotten ‘this’. I could have gone out dancing two nights in a row. I could have walked further, maybe even still gone running. I wouldn’t have had pain, depression, anxiety. My ambition wouldn’t have died along with many brain cells, I’d have stayed bright, sharp and clever and gone on to do great things and make a living for myself instead of being dependent on others.
I’m sad, upset and sorry that I didn’t get to be that person.
Now at least, I am aware of my limitations and can begin to mould my life by working around them.
I’m still not sure who to tell and how many to tell. I know I don’t have the diagnosis yet but I don’t feel I need it right now to know, I’ve got dysautonomia. My body is telling me in the pain in my chest, muscles and joints, my pounding heart every time I try to do normal things other than sitting, my exhaustion, my constant thirst, the headaches and the ‘overactive bladder’.
I feel I need the support of my friends but I am afraid also of them treating me differently. I don’t want them to. I want them to know so that they understand why sometimes I might not be able to go out even if I really want to, or why I can’t do the longer or steeper walks. But I don’t want them to ask me if I’m okay all the time or remind me constantly of my limitations by treating me differently.
I am just going to tell my closest friends, those I associate with most, just not sure when.
I know they’ll support me and be kind and good. I suppose once I tell them I can just ask them to treat me as normal, and that I’ll tell them if I need/want ‘help’ in any way.
I feel very sad and emotional today. I think all the stress of the past few weeks with these appointments and tests and keeping it mostly to myself and then finally being heard and getting the referral has taken its toll, on top of already feeling like cack. Now that I ‘know’ finally, what is wrong… I have to face up to it and it’s not easy, even though in many ways it’s a relief to make sense of things.
It’s so hard to get used to these limitations. See, I know I both want and need a shower, but I don’t feel I have enough energy to stand in there and wash my hair, then dry it after… but I also know that I feel dreadful in the mornings and need to walk to the Drs, so I’m probably better off doing it tonight and then going to bed, and saving doing less tomorrow morning if I can. I really am having to take care of my spoons more lately. (http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf) They seem more few and precious.
But, rather than being sad about the person I’ve lost, didn’t get to be… I am going to make the most of the person I AM. It’s not what life hands us that makes life good or bad, it’s how we deal with it. So I am going to deal with this as positively as I can, being thankful for the many wonderful things I DO have, and the many great people who I am blessed with knowing who make it easier for me when I’m sad, or tired, or just plain fed up; as well as making life fun and enjoyable and bringing me shared happy times!
I’m also going to make sure that I take better care of myself, and my body. No more pushing too hard, trying to be ‘normal’. No more wasting energy on people or things that aren’t worth it. I will fill my life with love and light only, and keep out as much negativity as I can.
You know, pain really is a great teacher. Pain of any kind, physical or emotional. It forces you to realise how many blessings you really do have, when you take the time to notice them. Even when times are tough, when you wonder ‘why me?’ and wish the pains away. You realise in some ways, you’re lucky. You’ve been ‘awakened’. You don’t take things for granted anymore.
I do acknowledge that it’s not always like that. I was sitting on my bedroom floor an hour before, crying with exhaustion and frustration. Would I rather be completely healthy and ‘unawakened’, taking it all for granted? Maybe. But I’m not, so I choose to make the best of this however I can, and if that means being Polly-freakin’-anna, then so be it! If it also means being a misery-guts at times and getting all ‘woe-is-me!’ then so be that too!! I’ll do whatever I can to get by. I just know that I feel better when I force myself (because yes, sometimes I have to FORCE it!) to look on the bright side and find the positives.
I find something really magical in the human spirit that I really love. When I get low, when things get hard and I feel sad, I look out into the world and I see a lot of love out there. It makes me feel better. There are so many good, kind, thoughtful people out there. So much beauty too. The world really is a special place. Being ‘this way’ has made me more compassionate and caring, that’s for sure. There’s a lot of love to have and to give, if you look at the world in the right way. I’m glad I can, and that I do. Because when things get bad and sad, there’s always that little glimmer, that spark, that makes it better again.
And hey, it’s gotten me writing from the heart again too, which feels good and healing.
So, thank you for this life, even with its hardships and limitations. I truly am grateful to be here, experiencing this wonderful world. Thank you, thank you, thank you.

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