So, the upshot is that I have to go back to the hospital again, at the end of November, meaning another appointment to deal with in amongst all the others I have between now and Christmas. Blah. I feel kind of upset about it to be honest - but what can you do?? Crap happens and you just have to deal with it when it does!
The rest of the tests went ok - had the echo (boobs flapping in the wind wasn't my idea of fun any more than the tilt table test is going to be, but ya gotta do what ya gotta do) and they fitted me for the 24 hour holter test, which was fine except my silly sensitive skin reacted to the electrodes and by the time I removed them today, I was covered in blisters and welts. Nice. :p
The going out of it all was the rough part. Seems like every appointment I go to, it's getting harder and harder to maintain the energy I need, and taking more time to recover afterwards. It's nothing I didn't expect but that doesn't make it nice to live through. This one was especially hard though. I was picked up by ambulance and rode to the hospital (and into the clinic) on a stretcher, which was great for obvious reasons. During the appointment however they had me sitting up for quite some time while they tried to fix the equipment. I was too wussy to object and they had chucked Anna out of the room (it's their policy not to allow visitors in the room while they do Tilt Table Tests just in case something goes wrong and they have to resuscitate you.) so she couldn't advocate for me. (That turned out to be quite a problem because when my neuro symptoms kicked in because I was sitting and getting exhausted, I kept forgetting words and my train of thought. Had Anna been in the room she could have communicated for me. I think when I go back I need to insist on her being in the room for that reason because I know when I am standing on the table it's only going to get more and more difficult to communicate!!!) Anyway, I was just about coping and I did eventually ask to lie down.
Unfortunately though, the clinic appeared not to know what to do with me once the apppointment was finished. A porter took me to the ambulance pick up station on a wheelchair and left me there. Apparently what should have happened is I should have stayed at the clinic on a stretcher/bed and waited for the ambulance guys to come back and pick me up. Instead what happened was I was left there, sitting up for over an hour before the ambulance finally arrived. By that point I could barely talk, had had to put my eye mask on because I couldn't deal with the light anymore, even with my shades on (you have NO idea how vulnerable and how embarrassing that is to do in public!!!), I was in so much pain I was near tears (VERY unusual for me), I was shaking like a leaf, and they had to all but lift me onto the stretcher to get me into the ambulance!!
All in all, a pretty horrible experience and not one I want to repeat! I'm going to have to get better at sticking up for my own needs and not letting anyone put me in a position I can't physically handle! I think before I go back in November, I'm going to ask Anna to call them and arrange in advance that I stay at the clinic until the ambulance comes for me with a stretcher, and insist nicely that she be allowed to be with me in the room while I have the test, to communicate for me. I know I'm getting better at meeting my own needs, but I still really struggle with asking other people too as well. I guess that old adage about Doctor's and Nurse's making the worst patients must be true, lol!
Please note : This post is an update to my previous post, Terrifying Tilt Table Test Tomorrow!
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)
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Great post Susannah.
ReplyDeleteIt is so hard to speak up for ourselves at times especially since the level of care we need is 'unusually high' for the way we look. (massive understatement).
Just when I think I am used to dealing with my 'special needs' something comes out of the blue to put me off balance...like a loud cd or screaming child or a bright light or even a pile of books on the doc's examination bed so I stay sitting. Which all start to hurt and become overwhelming after a while, then I start to get upset about the fact that something 'normal' is hurting and not okay for me....and so it gets worse.
Good luck with the tilt table test, maybe you could get a letter from your GP explaining why you need someone there to advocate for you, just to help nudge things along.
xx
Ps I also reacted to my 24hr holter test too...painful circular blisters, then the doctor suggested a week long holter test, no thanks!