The last time I was in hospital was 2014, which you can read about in these two posts Emergency admission part one and Emergency Admission Part Two . This time I wasn’t at my local hospital but one an hours drive away. I was admitted on the premise there would be an MRI and a blood patch later in the week. I am sad to report the blood patch didn’t happen. I am back to square one on the headache front. I will explain more in next week's post.
As usual my hospital stay gives me much to blog about. I really wish it didn’t. I really wish that every doctor that you come into contact with didn’t question my EDS diagnosis, even once I have explained my family history, I am still expected to show how bendy I am like some sort of performing seal. Why is it that the doctors that diagnose you tell you never to do your party tricks because it ruins your joints and essentially makes them more lax yet every other doctor you meet wants you to show them? It makes no sense to me. I may actually just take the photos in from my blog post in - from May 2014 .
The admission came quickly, I was really wasn’t expecting to be admitted so soon. It was exactly a week from my first meeting with my neurologists. Those of you who have followed my blog for some time will know my feelings about neurologists. These two at the moment appear to be different, as with any health professional I never let my guard down. I haven't seen them enough to pass a definitive judgement but so far so good.
I had been having a truly awful day on Tuesday 28th June, the pain had been crippling all day. It had been bad all week but this was on a whole new level. Jay had to come home from work to look after me, as I could barely manage to get myself the short distance between my bedroom and the bathroom. I have no idea what time the phone rang but out of the blue the registrar rang, Jay initially took the call but then handed the phone to me. He asked if I could get to the hospital for 9am the following morning. I had to be there that early so that I could get a bed as I would be in the hospital system before other demands for beds were made. The plan was to give me an MRI scan on Thursday and do an epidural blood patch on the Friday.
I can’t lie I was excited, the chances of my headache being ended was around 80% with the administration of an epidural blood patch. The end was finally in sight and I would be able to get my life back. I also knew there was a possibility that it wouldn’t work and I had to try to prepare myself for that outcome to. Unfortunately I didn’t prepare myself enough for the outcome of never receiving the blood patch, I am angry at myself for letting my guard done.
I had the usual problems on arriving at the hospital, mainly the staff in the small unit just wouldn’t listen to me. I tried to tell them that my veins are an utter nightmare however they were more interesting in chatting amongst themselves about a colleague being proposed to at the Glastonbury Festival and that this was now all over the internet. I tried not to get annoyed as I had no idea how long I would be remaining on the unit and would be requiring their help to get me to the toilet etc. I had to ask twice to be moved to a bed where I could lie down despite my notes stating what I was being admitted for and the “ward” containing 6 beds of which only 2 were occupied.
My team of doctors saw me quite quickly and discussed that they would probably be able to get me a MRI scan that day. Which was a relief as it could have meant that I would get to leave much earlier than envisaged. Always a bonus and I absolutely loath lying around in a flood lit, noisy hospital ward. Since the leak started most days I have to wear sunglasses (even indoors) and I am hyper sensitive to noise (it seems to echo about in my ears which isn’t fab when hubby is suffering from the worst hay fever he’s had in years and is sneezing all the time, obviously that can’t be helped). Hospital stays always make me much worse due to the over stimulation and the stress of it all.
My MRI was booked for 3pm and was the longest scan I have ever had being brain and the whole of my spine. No sign of a leak could be found which isn’t that uncommon (my neurologists certainly weren’t expecting to see it) but I did get the diagnosis of reversed cervical lordosis, which means the natural curve in my neck has gone and is now reversed.
Unfortunately (I seem to like using this word) the staff in the small unit weren’t happy that the MRI had been booked in the mobile unit. From family members having MRI’s booked in there I knew this meant one of them would have to push me up the very steep hill to get me there. On finding out that they would have to do it, one of them stood at the end of my bed, hands on his hips shrieking “where is your husband?” when I replied “in Exmouth” he really wasn’t happy
“Is it a power chair or manual?”
“Manual” I thought that answer was quite obvious as they had pushed me to the toilet twice, however on the second time I asked to go to the loo I was asked “Can’t you walk?”. Again the answer was obvious but clearly not to them.
“I will have to push you then” He didn’t exactly sound overjoyed at the prospect but as I had no control over where I was getting my MRI, I wasn’t going to be made to feel guilty.
The staff members on this unit were one of the worst I have encountered. Usually you get one shit member of staff but the others are good. After moving my wheelchair and walking stick out-of-the-way one asked me if I was fully mobile on completing the clerking document. When I said no she looked perplexed, I gestured to the wheelchair as what little patience I had left was ebbing away. It was another case of just not “looking sick” enough. She didn’t seem to believe me when I told I self catheterised or that I had problems with swallowing…….*face palm*.
I got moved to the ward and never saw a nurse or healthcare assistant until gone 5pm and that was then only because I was kicking off about the food. A catering assistant came to the end of my bed and explained no food had been ordered for me earlier in the day...which the small unit I had stayed in could have done, so all he could offer me was a selection of sandwiches. That would have been fine, had they not all contained meat. English was the gentleman’s second language, I tried to explain I was vegetarian, he didn’t get it. I told him I didn’t eat flesh, no he didn’t understand that either. I said I don’t eat animals…...He then offered me that well-known vegetarian speciality of cottage pie.
I did lose it slightly and told him if he didn’t understand what I was talking about to get me someone who did. He quickly brought a nurse back with him who offered me another vegetarian delicacy….fish pie. I again explained I was vegetarian (I am actually now vegan about 80% of the time but knowing this was probably going to be difficult had decided I would be vegetarian whilst in their care) and said I would eat a cheese sandwich. The catering assistant then told the nurse the kitchen was closed, she wouldn’t take no for an answer and made him check on the next ward over for a cheese sandwich. One was located and I got to eat, bless the nurse though as she came back at the end of her shift, apologised for the problem and told me she would be looking after me tomorrow so any problems give her a shout.
In between me actually getting something to eat and the nurse coming back, one of the patient’s visitors had decided I was racist and that I was just being difficult for not eating meat. He told me “after all it’s not the hospital’s problem you’re a fussy eater”. He chuntered on for a bit, getting other patients to chime in and in the end I had to tell him that he either shut up or I would call someone into remove him. I pointed out that as a lifelong vegetarian I was entitled to be catered for and asking to speak to the catering assistants manager is not an act of racism. It has become a bit of a joke in our house now as when Jay asks me if I want something to eat he offers me cottage pie or fish pie and when I refuse them, he mutters racist under his breath. It is the first time in my life anyone has ever accused me of that.
This had all happened in less than 24 hours, so to say I was stressed would be a minor understatement. As usual I had problems getting my medications but this time it was due to the fact that my prescriptions hadn’t been written on my chart. The nurse told me I couldn’t have the medications hadn’t been prescribed for me, to which I replied yes they have my gp prescribed them. I know I am a smart Alec but I really needed oramorph at the time and I was also 90 minutes into having no painkillers in my system which hadn’t helped my mood.
As this post is going to be a long one I have decided to split it into two. Really long blog posts irritate me as a reader and I imagine many of you are the same.
So just to recap I didn’t receive an epidural blood patch whilst I was in hospital, despite being told that was what I was coming in for.
I am still having to spend the majority of my days lying flat and I am in medical limbo whilst I await the plan that my neurologists are putting together.
In next week’s blog post I will explain why the epidural blood patch didn’t happen and what other mayhem I caused.
We are still fund raising for my new wheelchair and power trike attachment and you can find details here - go fund me help me walk the dogs again