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!

Susannah's Signature
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! :)



  1. I'm glad you updated us. I was wondering what ever happened with the appointment. At least you are making in roads to what might be going on and be able to deal with each problem.

    Having ME is bad enough. Added issues just makes it that much more challenging.

    The riots sound scary. I have never experienced that. I'm glad everything was calmer when you went to the hospital.

    Please keep us updated on your status.

    Sending you lots of love and hugs girlfriend! Hope you rebound soon and get some increased energy!


  2. One of my cousins does have endometriosis, and was recently in hospital for a laparoscopy (where they look at what's in there and take out whatever they find that shouldn't be). They did it as a day surgery, which is really ridiculous because it's an invasive procedure done under general anaesthetic. She was expected to be home in the early evening but was there until 10pm, and the nurses were getting quite frustrated at having to be there that late. The doctor explained what they had found, but she was too out of it from the morphine to take much in.

    Unfortunately, she was discharged too early and developed an infection (it seems because some of the material got dislodged but stayed in her body and stuck to the back of her womb). So, she had to be readmitted Thursday before last and is still there now, having some quite harsh antibiotics which have made her sick every day. The staff at the hospital she's at now (not where she had the surgery) said they should have kept her in overnight, as they always do.

    I think hospitals get people out too quickly, and don't provide after-care -- perhaps the excuse is infection control, but I guess it all comes down to money. My sister could have done with being in a bit longer after having a baby last year, too, and she also had to go back in because the baby girl developed jaundice. They also did not manage to establish breast-feeding. When my Mum had me, she was in for ten days and she breast-fed me for more than a year afterwards.

    So, ME sufferers aren't alone in having to deal with NHS cock-ups and doctors and nurses who just want you out the door - I think care has got worse for everybody, especially the elderly and disabled. I'm just thankful for my own health, really.

  3. Hey Dominique. :) Yea I'd been meaning to write an update ever since the appointment, but my body said no with a great big full stop after it, lol.

    Yea. It's a step in the right direction on this particular issue, at least. Unfortunately probably the issue that is causing the least problems, but at least it's something. I think probably all my additional illnesses both make me sicker by adding their own symptoms to the mix, and also play into the ME, making that worse because of the additional stress on my body, so it really doesn't help. (Understatement of the year there lol)

    We were lucky in Liverpool - we only had two nights of rioting and it was extremely mild compared to London - basically large scale vandalism rather than full on rioting. What frustrated me is that it was all so pointless. There was no real social issue causing these specific acts - though general social pressure and unease definitely was underlying people's anger - and these people just caused more problems for their own community. Stupid and ignorant!! I did hear of one very ill lady in Liverpool (A friend of Anna) who has severe fibro and is more or less housebound, whose street was affected by the riots, and this crowd of people were outside her house, banging on the doors and windows - terrifying for someone in that situation! That made me furious!

    Thanks Dominique - you're a sweetheart!!

    Hi Matthew!! Sigh - makes me so frustrated when any surgery's done under general are done as day-patients. It's my opinion as a former nurse that people should be kept in at least overnight, to ensure that they really are ok ... particularly if it's late night by the time they are physically ready to leave the hospital. And another thing that makes me angry is when medical staff don't ensure that the patient really understands what they're being told. Doctor's tend to be especially bad at that. In the unit I worked in, (NICU) we always made sure that a nurse was there with the parents of the babies when a doctor needed to talk to them, simply so that we could re-explain it to the parents afterwards to ensure that they understood, lol.

    I'm glad your cousin went back to a different hospital - it sure wouldn't inspire confidence to have to go back to the place who let you go home so soon that you became that ill as a result!!!

    Finances and resources (including staff) are certainly behind this push in the last decade or so to start getting people released earlier and earlier - but undoubtedly there is a cost in terms of the people it's affected, and some lives that will be lost. In my personal opinion, that cost isn't worth the saving in money ... but then, I'm a nurse not a politician, so my priorities are different. I suppose for the people running the hospitals, they are only given so much in terms of resources, and they have to make tough decisions - I don't envy them!!!

    Yes, care has absolutely got worse for everyone, and I'm scared it's only going to get worse, especially if things become more privitised!! Though I have to say, despite the major problems I've personally experienced in the NHS, I'm still glad we live in a country that has a system like this. I think the loss of both life, and quality of life would be tremendous if we were living in an country with an insurance based healthcare system. The divide between rich and poor would widen drastically were our country to go back to that. And that's coming from someone whose life has been rather ruined by the NHS as it is now, lol. Biased against it yet still rooting for it regardless.

  4. Wow - that got very political, didn't it!! Apologies to all! *Wry grin* ;)

    Masses of spelling mistakes also, I noticed only on reading it through after posting - typical!!!

  5. Well, she didn't go to another hospital because the second one was better -- its reputation isn't that great. She had the op at her local hospital and went to her mother's house to recover, and so when she was readmitted, it was via the A&E at her mother's local hospital.

    I wrote about this situation (with less personal detail and more discussion) at my blog recently, here. I think short stays are easy to sell to patients because nobody wants to be in hospital (their disadvantages for ME sufferers are well-known, but they are very unrestful places for anyone, besides having to share a room with six or more others and eat hospital food), but being discharged before you're properly recovered can be dangerous.