2 July 2011

i think i might jinx myself saying this..........

so if i say it in a whisper i might just get away with it.

i found a small cottage for rent next week in norfolk. monday morning mum is going to phone up to see if we could rent for three nights next week. is this going to be another cancelled appointment? i dont know, but if i dont try i wont know.

been a bit breathless today, lowered my beta blocker, take 20mg in the morning 20mg at night. now for a potsie thats quite a low dose but i cant tolerate anything higher. so ive been taking 10mg in the morning thinking that would allow my pulse to stay above 37bpm. this morning i felt much the same, chest pain, breathless, lightheaded, took my pulse it was 40bpm. i was hoping it would at least be in the 50s.

ive always like to be in control of things to some extent. right from when i was a child, i liked things going to plan. i can see why now. my health was always in a constant state of flux. never the same. so it would make sense me liking calm, planning. what a disease to have for a control freak.

hope this makes sense, fuddled brain today.


Ellen said...

HI Em,
It would be hard on anyone, not knowing if you can follow through on plans or if your health will intervene. I also have to cancel things when symptoms come up, and I hate it. Hope you do get to that cottage - sounds lovely and summery. cheers

Achelois said...

Hi em, the cottage sounds divine, I admire your tenacity, perserverance in having another go. I have a good feeling about this. Lets keep our fingers double crossed which after all we are good at and all being well you will get there. I know for people who think all this type of thing is silly they may think it is a load of rubbish. But thats up to them and sometimes anything is worth a try. On that pain managment course I went on we did a lot of visualisation etc.not just for pain but to help with the setting of targets/goals.So if the cottage has some pictures,between now & going try some deep breathing-as you breathe in push your tummy out, three times at a go, shut your eyes,imagine yourself in whatever place you fancy from the pictures. Lying in the bed, with a beautiful view perhaps, lying in the bath with a special bubble bath. Also, breaking the journey into managable bitesize pieces, so even if you don't get all the way on Monday for example perhaps a stop in a nice little place for some rest and recouperation, whether planned or not. If thats overnight, so be it, or for an extended lunch or tea somewhere pleasant, no pressure either.No rules, about exactly when you get there. Pulling over lying in the back seat of the car with your feet up sleeping for a while it just doesn't matter. Lots of distraction in the car,a really good, cd story book for example, anything to distract. I get stressed on any car journey,eldest son has taken to playing childhood games for distraction!I am so not trying in anyway whatsoever to be patronising (I hope you know me better than that by now em) & I know how debilitating the POTS is. I am just thinking of anything no matter how small in the hope that something I may mention may mean you get the break you so deserve. Upping your salt big time & hydration is obvious(so munching on crisps and glugging water is a must) (grandmother & eggs come to mind here eek) as your adreniline will be higher due to the anxiety associated with the trip because of what happened last time. But that was then, you will have learnt from that. If you didn't have to drive I would seriously suggest a decent dose of valium, sleep for the journey & get your mum to wake you up when you get there. Oh yes on the visualisation stuff one doesn't have to be good at actually 'seeing' the pictures in ones mind just thinking about it helps. So perhaps imagining how much Rosie would enjoy the countryside would be a good one. On the beta blockers, its tricky as you hve explained.I am not sure,constantly monitoring bp is helpful or not, it depends what your specialist thinks on that.So I have lit a long life candle for you em, which will burn brightly for you, just you, as I don't pray, I light candles instead.Some think that makes me silly but hey I don't give two hoots about that.It is a reminder to me to focus on the person needing no jinx's!So between now & then bloggy people lets of think of em & collectively through whatever means we can lets get the girl to Norfolk.
Thinking of you em, and am off now somewhat metaphorically red faced (as I am always pale) at having written so much, lets see if the blogosphere will let me publish quite so much!
Off to light the candle em, and can't type anymore can I as my bendy fingers are going to be too busy being all double crossed for you.

Melinda said...

I hope you get to stay at the cottage and relax. It's hard to let go of control, isn't it? I hear you.

Em said...

hi ellen

i think im going to have to try to acccept this is how life is going to be from now on. whereas previously i could squash my mild symptoms, now i simply cant. fingers crossed, i will go. xxx

Em said...

hey achelois

down your neck of the woods today, hove. lovely sunny day, slightly red arms to show for it!!!

i think im going to pack last thing tomorrow night for tuesday morning, that way i wont get stressed, and its only for three nights so not much packing to get me tired. strange to have a disease that is so variable. i like constance, plans, not upheavel, and inconsistancies in plans. never mind. your ideas are good and thanks for writing them down. i must get away of this idea that i jinx things. just imagining that im going away freaks me out at times, thinking i will prove myself wrong, so i try to block everything out till the last minute and hope for the best! i think change is needed.

thanks, take care. x

Em said...

hi melinda,

thanks. maybe is this world we forget to think that we are beyond control ultimately. certain things we have slight control over, the bigger things we havent. take care of yourself, lots of cuddles with satie. xxxx