Showing posts with label Poly Cystic Ovarian Syndrome. Show all posts
Showing posts with label Poly Cystic Ovarian Syndrome. 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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Monday, 29 August 2011

If That's What it's Like to be 'Normal', I Want it!!!


Image of Liverpool Clean up after the riots, taken by Peter Carr | Little Time Machine - View his website here.
I can't believe it's taken me almost 3 weeks to update you guys on my appointment at the Women's Hospital! Yikes! I've been basically floored (well, more accurately, 'bedded' - but since that sounds rather um, rude, I'll move swiftly along....! Smilie winking) by having to go out. As those of you who are friends with me on Facebook may know, my appointment fell on the day after the first night of (ridiculous & pointless!!) rioting in Liverpool. The areas all around the hospital, and the area I live were the worst affected in the whole city. Overnight, we were concerned that we may not be able to safely reach the hospital, but by morning, the streets were cleared, opened, and settled again, (though there was lots of broken glass, fire engines, and many cars had obviously been vandalised or set fire to) and we managed to get to the hospital with no problems at all. Phew. (Can I just say, I was really proud of the way our city reacted to the riots - there was a citizen organised clean up operation set up on facebook as the violence broke out on the first night, and hundreds of people arrived first thing in the morning to clean up the streets! There's a real sense of community in Liverpool, which most people from outside our city would be surprised by, given our unfair reputation!)

My Orthostatic Intolerance (specifics as yet undiagnosed, but almost certainly POTS) poses quite a problem nowadays when I have to leave my bed for any length of time, because standing and sitting cause my blood pressure and pulse to rise rapidly to fairly dangerous levels. The hospital is only a few minutes away by car, but factoring in the sitting I would need to do at the hospital, the only safe way to get there is to lie down in the back seat of the car. (We were unable to get an ambulance, because my GP didn't send the hospital the information they needed until the very last minute, despite several attempts by the hospital to contact her, meaning that the appointment wasn't confirmed until the Friday, leaving no time to arrange it!! Thankfully, my dad agreed to drive me there and back, despite him having to also take my mum to and from the Royal for her Velcade treatment on the same day!) It doesn't feel especially safe being in a car with no seatbelt, and I get car sick ... but I'm left with little choice in the matter.

The staff at the hospital were all really lovely, & amazingly even found a spare room/exam table for me to lie on during the hour I was waiting to be seen. Uncomfortable, but at least my pulse stayed relatively stable, and it was much quieter than it was in the large waiting room. They even turned the light off for me. (Light intolerance and the resulting pain in my eyes was definitely the worst thing about the trip, actually, which surprised me somewhat! I had sunglasses once I got there, and I wore an eyemask in the car, but honestly I felt very embarrased about it all!) I also find that the effort of getting ready to go out, being driven to the hospital, wheeled to the unit in my chair, dealing with all the light & noise & sensory overload ... then lying for an hour on the hard exam bed, did really slow down my cognitive function very significantly, and I was finding it really hard to think and communicate by the time my appointment actually came around. I think my speech was quite slow and slurred too, which was embarrassing and frustrating. I'm just glad Anna was there to communicate for me when my own words failed!!


I saw the clinical nurse specialist, who was very nice and very respectful of my ME & the issues it causes, though it seemed like she was rather surprised at how badly I was affected. (I'm sure she doesn't get many patients who can't handle light, lol) She took a history, did an exam etc, then I had some bloods taken. I'll have to go back once the results come in - it probably won't be till October, which is ok by me because I have the Cardiology appointment in September, and I'm not sure I could handle two appointments in one month!. The Nurse Specialist thinks it's more than likely that my symptoms are being caused by the PCOS being totally out of control, but there's a chance other things are going on. (I have an increased risk of various cancers, for instance)

I would normally have had to have a scan at a separate appointment, but I was brave enough to ask if there was any chance at all that I might be able to have one that day. She rang round to the xray dept on the off chance, and amazingly, they said 'yes, come straight round and we'll fit you in'!! Apparently that literally never happens! I think they had, had some cancellations because of the riots. (So at least that stupid situation had SOME use then! Lol!) I was so relieved they were able and willing to fit me in, because even though it made that particular appointment longer, it means one less outing over the next few weeks, which will make a massive difference to the potential for short or long-term relapse caused by all this activity!!! One of the big concerns, and reasons why I had to get a scan, was that I may have developed Endometriosis, which is always a possibility because of my PCOS, but the scan didn't show any obvious signs of that according to the radiologist doing the scan, so that's one huge weight off my mind!

Picture of a rickety scary looking bridge in the Philippines, by Raelene Gutierrez - view her flickr stream here!
However, kind of scarily for someone in my situation, there's a chance I may have to have a Hysteroscopy, depending on the results of the various tests I had at this appointment. The nurse was aware of the risks of my having a general anaesthetic, (The procedure she has in mind would normally be done under general) and said there are various options we could look at - none of them very pleasant, all of them pretty scary (!) - so I really don't know what I would do about that if it's necessary. I'm gonna have to do some research before my next appointment so I know the implications of those different options. (Anyone know much about these kinds of issues for ME patients??) Honestly I think I just have to hope upon hope that she decides it won't be necessary, because I don't know if I could risk a general anaesthetic, and without it the procedure would be pretty horrible. Either way, even as a day patient, it could have huge implications for my ME, as well. Even looking at just the thought of being in the hospital for a full day is pretty overwhelming, and would be incredibly difficult for me for so many reasons ... and that's without even going into the procedure itself, and the recovery period. However, I can't do much about it ... if it does end up being necessary, then I'll just have to cross that scary bridge when I come to it!

All in all it, the visit went about as well as it could have, I think. The unit really did try to accomodate my needs, which made things so much easier - and was a really nice change from the norm! The nurse was really shocked when I told her about the situation with my GP not making home visits, etc. (This was after she had seen the rather shocking list of my symptoms, etc) Everyone was just so nice!!! I just couldn't stop thinking, 'Is this what healthcare is like for 'normal' people?? Being respected and taken care of. Treated with kindness and compassion. Your needs being heard and effort being made to accommodate them. Not having to fight for every little thing you need. Not feeling like you are just an irritation to the staff. Not feeling like you have to fight to get people to even believe that you're really ill. Not having to justify & explain yourself & your illness & disability. Just being accepted and validated as a human being who is genuinely very ill. The truth is that the comparison between this experience, and the now normal-to-me experience of having to constantly fight a system which is doing it's best to make you feel like you are nothing, nobody ... it's just utterly shocking. It really highlights just how bad things are for me ... for so many of us. It seems really sad to me, when I think about it, that it would be a surprise - a shock even, for someone when they are simply treated with a normal amount of respect and compassion!


Is it really too much to ask, to just want to be treated like any other patient????


I've definitely had a rise in symptoms since the appointment, my pain especially has been pretty bad, and I've been feeling sort of numb, cognitively - but none of it has been as bad as it could've been had I not been able to lie down at the hospital. I feel like that made all the difference between it being extremely difficult, and an absolute nightmare! I feel it also made a difference that I rested so much in the couple of weeks before this appointment, and I'm going to have to keep to that over the next couple of months too, with a minimum of two more appointments to come. (It's unbelievably frustrating though to not be able to be online and communicate with friends!!!) Now I can only hope that the cardiology unit I have to go to next month will be as understanding & helpful!!

It was very strange going back to the hospital where I used to work as a NICU nurse. It's been so long since I was last there, and it all felt slightly unreal, like some kind of weird out of body experience! (Probably not helped by the kind of tunnel vision effect I got because of the combination of sensory overload & cognitive 'slowness'.) It really does feel like the me who was a nurse was a different me ... someone I barely even recognise anymore. A different lifetime and a different me. Different ... yet, somehow, at the same time, still exactly the same!




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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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