I'm really getting nervous about the Tilt Table Test tomorrow!!!! It's kind of ironic really that I'm afraid it will be a horrible, painful, exhausting process and that my results will be strongly indicative of POTS ; but equally, scared that all the results will be perfectly normal and they'll say I'm absolutely fine!
It's the default thought pattern I go to with things like this. From what I've read on other blogs in the ME & Dysautonomia community, it seems to be fairly normal for us to feel that way - and it makes sense if you think about it. Our medical histories are splattered with complex symptomology, doctors who didn't understand or believe us, and tests with normal or borderline results. (In main because they generally don't give us the right tests, particularly in the UK where doctors are actually taught not to order medical tests for their ME patients!!) So our default feelings about such things are fear and trepidation that once again we won't be believed - no matter how much we know we are extremely ill and really need help. In this specific case, I am as certain as I can be that I have POTS, because a) my symptoms so obviously match up, and b) the poor man's tilt table test showed very obvious results that could only really mean POTS so far as I'm aware. But I still don't trust the hands of doctors, after so many years of facing ignorance and prejudice. And in all honesty, I can't say I blame me!!
Can I just hide instead of going, tomorrow???
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| photo by Annemarie Vriends | via PhotoRee |
I'm so worried that not only will this tilt table be a massive physical challenge, but also that it will trigger my abuse issues while it's at it!! Being so out of control, strapped to a table, is not my idea of fun, put it that way! (Though I believe my arms will be free, thank god!!! Being completely pinned down and totally vulnerable would be too much!) I'm also so relieved that Anna will be there with me - I don't think I could handle it alone, and I hope she knows how grateful I am that she's taking a day off uni, where she's only just begun her PhD two weeks ago! Another plus is that we were able to organise an ambulance transport for tomorrow, so hopefully that will make things easier.
Sigh. Anyway - just a teeny tiny post this time (well, by my rambling standards anyway, lol!!) as I'm not having a great week. I had to come off the salt tablets because the side affects were just getting worse and worse, and well, I guess they were helping to some extent, because I've been pretty much floored for several days now. I'm going to try to get some advise about it when I'm at the clinic tomorrow, though I'm not scheduled for an actual consultation with any of the doctors while I'm there - at least, not to my knowledge.
I hope you're all doing ok, and looking after yourselves. I know so many of us have been affected over the last couple of weeks both by the death of Amberlin Wu, who was a big part of this community and friend to many of my friends, though I didn't know her very well myself - and by everything going on at the Whittemore Peterson Institute. It's really been a horrible time, and I'm thinking of you all. x ♡ x
Update : 16th Oct
I didn't have the tilt table test in the end, because their computer decided it wasn't going to play nice and wouldn't work. I posted an update here : The Law of Sod!
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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I wish you luck. Great blog! Much of what you said rings true for me too. Hope all goes much better than you even hope for; sending you good thoughts for health and hope.
ReplyDeleteFYI: I'm @CommunityBldr on Twitter
ReplyDeleteI've had a tilt table test.
ReplyDeleteRe: the strapping down - if it's like the one I had, you're not 'strapped down' per se, it's more like straps across say your middle and your legs so that if you fall, there's something to break your fall. I was given a cushion for my head, my arms were free (although I was asked not to move around). As far as impossible physical challenges go (I was standing with a sprained ligament in my foot, it was about four hours before I'd normally be awake, and I can't remember the last time I was able to stand still for 45 mins...) it wasn't horrendous.
Just be sure, afterwards, to have someone with you to explain to the nurses that the reason you're shaking, grey, can't speak, etc etc, isn't actually because of a positive result, it's because of your ME. They wanted me to stay for an hour afterwards, and eat something, and I could barely understand them. My Mum had to bully them into letting me go, and believe it or not I had to sign an against medical advice form!
Thanks so much Marsha & Sparks. :)
ReplyDeleteYea Sparks, I know you're not exactly strapped down, really - it's just one of those triggers where I can't stop my brain from freaking out even though I know that I'm safe, in reality.
I'm glad your test wasn't too horrible - that is reassuring. :) Yikes, your poor foot though!! Yea, it's a good point about making sure they understand the full reasons as to why it's affecting you in certain ways. I understand your signing the against medical advice form and getting out of there ... I was in hospital once and I couldn't cope with being on the open ward with all the busyness. I didn't go quite as far as leaving against medical advice, but I did push things through really quickly, and was discharged sometime around midnight, when really they wanted to keep me for another night. I don't think most people would understand that, but anyone with severe M.E. sure would!!!
I didn't have the tilt table test in the end, because their computer decided it wasn't going to play nice and wouldn't work. I posted an update here : The Law of Sod
Ugh, bugger about your test. And yeah, for me the test wasn't /that/ bad, but it didn't actually show anything up. With me it's not actually POTS (we think), but I faint all the time - basically I'm at risk of it whenever I'm standing up. So, yes, in the tilt test I fainted (because I was upright) but it was twenty minutes after the tilt actually happened (ie, was still during the test but fairly clearly a result of me standing, not a result of the changing angle) and I tried to explain to them that actually, I faint all the time without becoming grey, shaking, being unable to speak, barely able to see, unable to eat, etc...but of course I was too tired to explain! Mum was really angry with them about it.
ReplyDeleteBut definitely insist that Anna goes with you into the room next time. It's a reasonable adjustment, and she could always (for example) sit next to the door, so if they did have to recusitate you, she could go outside really quickly.