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

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....! ) 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!

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!

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!

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! :)

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

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