Showing posts with label mistrust of doctors. Show all posts
Showing posts with label mistrust of doctors. Show all posts

Saturday, 16 June 2012

The Saga (and I) Continue Wearily On

Things have gone from bad to worse with my GP issues, as I told you in my last post... And I have to say that I'm sick to my back teeth of talking about it, and thinking about it... round and round my head in circles that never go anywhere and can't resolve anything - but I know I can't stop yet because that means fully giving up.


To recap, my GP, in a sudden, dramatic, and unexpected move, has left the surgery. The patients (including myself and a large majority of the other 'vulnerable patients' who attend this surgery) are lost, and the staff are confused and shocked. She did no official handover to another doctor, so none of the other GP's know our situations or histories past what they can see in our notes. The surgery almost always refuse to do home visits, and I can barely get to my bathroom, never mind to the surgery, so how am I meant to get to know and trust another doctor, and they me? It's a ridiculous situation and one that just shouldn't happen short of the unexpected death of your doctor!)


Anna is currently trying to arrange to meet with the doctor who seems the best replacement & the practice manager, to figure out a way forward, but it's not fair to her that she's having to do something so stressful at a time when her health and her (severe) PTSD are flaring up badly, and when she's also having to adjust to this new dr herself, whilst dealing with a long term as yet undiagnosed health issue. I'm almost more angry about that than anything else, given how much Anna was already struggling, and the tendency of Dr's in the uk to presume a psychological cause for physical illness where a psychological issue already exists, as if they don't realise that, for example,  someone who is depressed or is Bipolar, can also develop MS or Cancer!! (really, how closed minded do you have to be to think that way???) Of course, I'm also now open to that kind of re-interpretation of my illness, which is probably my worst fear in all this. We know nothing about what kind of person this new Dr is, or what he knows or believes about ME... And that's just terrifying! My previous dr may have been borderline or actually neglectful, but at least she didn't try to force me into unhealthy, psychological treatments! There was some level of safety in that.


Complicating issues even further, I need this doctor to communicate with my Gynae doctor about my current condition. The manager over at that clinic thinks that I should get the Hysteroscopy (Did I tell you I need one? I have Poly Cystic Ovarian Syndrome which has been really flaring up over the last two years, and they want to check that nothing else is going on) done under anaesthetic, because among other issues, it would probably be impossible and definitely be extremely painful and difficult, to hold my legs up in stirrups for the length of time the op takes. However the consultant won't agree to this course of action before he has seen me to assess my condition. Anna has talked to the manager and let her know that if they insist on my going in to see him again just for that, that means 3 visits back to the hospital essentially just for one operation, (I will have to see the anaesthesiologist too, you see) which would mean double the exhaustion and recovery for me. She totally understood and suggested that if I can get my GP to contact the consultant stating that he believes I will need the anaesthetic, then that might suffice. Of course, my GP has never even met me, so how can he do this?? Even worse, he is currently on a 3 week holiday, so everything is completely on hold! So frustrating!!! The one hope I have is that I've requested a copy of the medical report the DWP doctor filled in for my recent DLA reassessment. Considering that I got the highest level possible in that benefit, we're thinking the medical report must have been a really good one. I'm hoping beyond hope that it is, and that we can use it to prove my case somewhat to my new GP and even to the Gynaecologist, if necessary. Seems so funny to me to be pinning hope on such a thing, since similar reports about me have in the past been terribly negative and presumed me to be a malingering liar. There's irony for you!


I opened my Blogger app wanting to write something uplifting and hopeful, but I found that I just don't have it in me, you know? I feel really flat and tired, emotionally. I've had enough of all this fighting. Every day is a struggle just to eat, sleep, get to the bathroom, brush my teeth, ignore the pain, and not go completely crazy trying - and I have little left over to figure out a way through this huge setback. It's just too much. Some days, hope, happiness & health feel so far away that it's like they exist in one reality and I in another. Things really shouldn't be this way. We shouldn't be alone in this! Doctors's should be a safe haven who care for and support us - not something to be feared. I can only hope and pray for all of us that one day, that will be our reality - preferably before this illness affects yet another generation!!

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Oh hey, not to end on such a tragic note, here's a piece of sage wisdom and a reason to hope, imbued in me by reading Blackout by Mira Grant, & Alison Hewitt is Trapped by Madeleine Roux over the last week. Things could always be worse. We could be surrounded by a zombie hoard, just waiting for the chance to eat us! ;) There ya go. My work here is done! Way to rally, Susannah! ;)

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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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Tuesday, 15 May 2012

The Universe Just Keeps on Giving! :P

Unfortunately, those gifts just aren't always good!!! Sigh.

We just found out today that my GP has suddenly up and left the surgery, with no warning whatsoever to patients (and according to my liaison at the surgery, it was a complete shock to the staff there, too!) and no obvious dr to switch to within the practice, for those patients who only ever saw the Dr who has left, because she was easily the best Dr in the practice and one of the better Dr's in the area.

I have had my problems with this Dr, but most of them were as a result of the area we live in and the restraints of the practice she worked for, rather than her being a really bad doctor ... But despite all that, I'm feeling a bit panicked about this situation!! She was the only Dr there who knows anything really about my condition, and about our situation here at home. (and how would a new GP get to know me when they refuse to do home visits 99% of the time, and I cannot get to the surgery???) She was also treating Anna who has been very ill for a couple of years, again with quite a complex condition. (Anna has Post Traumatic Stress Disorder, too, and really relied on our doctor to be sensitive to that. She's been crying on and off all day, she's so upset about this - which makes me so mad, I can't even tell you!!!) I know, too, that the Dr treated quite a few other very vulnerable patients, so she has left us all very much in the lurch. I feel really quite angry that she gave us no warning at all, and that she apparently hasn't formally handed us over to any other doctor. To me, that is really, really unprofessional!! She was the only Dr I had even a small amount of trust in at the surgery ... And I honestly have no idea what Anna and I are going to do now!! I was invisible enough already at my practice and now, presumably, there will be no-one looking out for me at all! I've rarely even met any of the other doctors!! I just feel so numb about it all. Neither I nor Anna have the emotional or physical energy to deal with this - there's enough to cope with already!

There isn't really any good surgeries in this run down inner city area, so it's not even like things would necessarily get any better if we picked up and moved to one of the other practices - and it's kind of like playing Russian Roulette because you really have no idea what the doctors are actually like until you switch to their practice. (It's not like in America where you can really pick and choose your doctors, and go to meet them before you transfer to their surgery, etc.) It's not such a problem in the wealthier areas of the country, but it can be a serious issue in the poorer areas because the NHS doesn't dole out the money fairly across the country, and because many of the good GP's refuse to work in the run down areas of the country.

I really feel like I just faded a little bit more ... like I was hidden in deeper shadow from the outside world, and I have no idea how to become visible again. :(

'A Fading Girl' by Sarah Allegra, used with permission of the artist. Click here to visit her Gallery!
'A Fading Girl' by Sarah Allegra, Used With Permission.



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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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Thursday, 13 October 2011

Terrifying Tilt Table Test Tomorrow!

Like my alliteration? ;) Lol - I know, I know - so sad! Heh. Ok, on to the serious stuff.......

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???

Can I hide instead of going to my Tilt Table Test tomorrow??? Image by Annemarie Vriends
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.

Tilt Table Test - not my idea of fun! - Oh the drama!!


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!

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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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