Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 06-05-2013, 10:03 PM #1
arlsandstrom arlsandstrom is offline
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Join Date: May 2012
Location: Australia
Posts: 55
10 yr Member
arlsandstrom arlsandstrom is offline
Junior Member
 
Join Date: May 2012
Location: Australia
Posts: 55
10 yr Member
Default lets play a game- list of how TOS makes you sad.

I don't post very often, so hi everyone!

Bad day today. Had an amazing couple of weeks with no meds, no heat pack, and few grumpy outbursts. That was a month ago now. Then I did too much travelling carrying heavy bags and fell over in the hotel room when the shower rail fell off while I was leaning on it. Sometimes it's one thing that holds you back for ages.

I am writing because I am really struggling with this mentally. I am doing all the things I can to work on the physicality of tense muscles. But this is ongoing due to my extra rib. No end point, but it isn't bad enough all the time to have surgery to remove them. Meditating trying to stay calm and taking the drugs when I need them- often I do this when I feel nauseous and am extra grumpy, and it isn't till I take the meds that I realise how much pain I was in and how hard I was working just to get up out of bed.

I am sad I can't hold a pretty hand bag.
I am sad I can't lift a kettle.
I am sad I can't have long hair.
I am sad I can't stretch my arms out like normal people before exercise.
I am sad I can't stretch when I yawn.
I am sad I can't play computer games.
I am sad that cooking hurts. I like cooking.
I am sad that I can't pluck my eyebrows.
I am sad that most evenings I am in pain and too tired to be nice to people.
I am sad that I am never comfortable on the lounge or when trying to sleep.
I am sad that I have to take so many painkillers.
I am sad that I don't want to have sex because I can't figure out how to maintain posture or be spontaneous when I am in pain.

I am not sad that I can't wash up or hang washing out.

My mantra at the moment is "first world problems". I have all my limbs and some extra bits. I am clothed I am sheltered. I can work and play piano and sing and earn money. It's just that I don't feel like I have any energy left for life in general, keeping a happy home life seems to fall down the list and I can't seem to fix it.

Anyone know how to stay nice to people who don't seem to get how hard this is every day and how many decisions you have to make just to keep going and not fall in an agonising pain wracked heap?

Suggestions, thoughts, comments?

Thanks,
Ans
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