22 June 2011

so what happened?


i havent come to terms with having a fluctuating condition at all. i thought that i had. the therapist that i see, a few weeks ago said she thought i had PTSD. i didnt think so. maybe shes right. i dont know.

my body has a mind of its own. any infection, change of weather, change of position for goodness sake, seems to set off a barrage of senseless warped symptoms.

come saturday morning, i was pleased that i had paced myself through the previous two weeks. i arrived two miles from the tunnel, feeling urgh, i didnt know whether some stress had set things off. i was hot, with chest pains, couldnt breathe properly,(didnt help having a heart rate of 41), i tipped over into panic. what if i couldnt eat when i was away? my body needs regular nourishment now. no leaving it for days and whizzing through holidays on adrenalin. a decision later, me and mum turned about and came home via brighton. i didnt want to go home defeated. terribly upset. we eventually returned. with packed bags.

i felt useless, for the first time i felt that my body wasnt working with me. i couldnt push it too an extreme. no more. i cried. i shouldnt of because i felt ill the next day.

The plan.

next wednesday a day trip to france is planned. nothing is booked (luckily euro tunnel has extended the trip for a year), we just turn up and go if im ok.

also trying to go away for three or four days somewhere in england in a few weeks time.

thanks for all the comments, very kind of you all, will reply when my head is a bit straighter. xxxx


ZKiwi said...

((((((((((( Em )))))))))))

I'm so glad you have these alternative plans in place now. I really hope it helps ease your pain - even just a little bit. I will be keeping my fingers crossed the new plans work out for you. In the meantime, please try and not be hard on yourself. It's understandable you are upset.
Does your therapist think you have PTSD from your illness? I was traumatised when I first became extremely sick and (after my sudden thyroid condition was reversed) all the doctors started telling me the remaining symptoms were just in my head... I *knew* they weren't, and I was terrified I might die before the docs figured that out. Turns out even my husband thought I was going to die, so it wasn't just me. That kind of thing can be very traumatising so I wouldn't be surprised if you are suffering from trauma related to your illness. Whatever caused it, I really hope your wonderful therapist can help you find some relief, Em :-)
Take extra good care *huuuuuggggs*

ZKiwi said...

p.s. I'm not sure how to come to terms with having such a wildy unpredictable condition. I hear you - you can sit up the wrong way it seems, and it sets off a nasty chain reaction. Every single time I manage to go out these days, I'm exhausted by the time I'm ready to exit the front door. Now I usually just try to ignore it, and set myself up with about 10 pillows in the back of the car so I can 'nap' on the way to wherever we're going - then just stay in the back of the car once we get there if need be.

Nechtan said...

Hi Em,

I can totally understand your reluctance at Dover. Feeling that way I wouldn't board either. I'd be thinking about what would happen when there wasn't the opportunity to turn back when feeling terrible. So personally I think you were right at that time to head back.

It might need a bit of confidence building in the way you are suggested by taking trips around the country and maybe staying overnight somewhere just to get that belief within yourself that your body is up to it. And then I think you'll be better equipped to approach a longer stay over the channel. I wish you well with that because I do believe it will happen for you.

All the best


Em said...

hey kiwi

thanks, you know how crappy P.O.T.S can be, how it affects everyday life.

yeah L the therapist thinks due to years of misdiagnoses i have developed PTSD. I really thought too that i was a gonna during the pots dx. i wasnt even scared toward the end.

i still push myself because of those years i remained undiagnosed, there was nothing i could do then but push on. the g.p just has no idea what she has done, and doesnt care either. thanks for caring kiwi. hope your ok at the moment. xxx

Em said...

hi nechtan

thanks, i did plan a few short trips before the departure, just never got round to going on them. i foolishly thought that i would be able to just 'go'. really hope you continue to write your blog. always interesting to read. x