If you want to know what an absolute bitch of disorder EDS can be and you aren't afraid of the mention of lady parts continue.
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There has been a joke in our house since 1998 that I can not go through a Football World Cup without an emergency hospital admission. Just as England were putting the final nail in their coffin on Thursday (19th June 2014) I thought I may have actually broken the curse. Then my body went "yeah right" snorted, rolled its eyes and sent me on a journey to pain a level of which I didn't know existed or that you could live through.
As the football match drew to an end my insides had already been hurting for a few hours. I had a pain low down in my abdomen that felt a bit like period pains. It was burning, uncomfortable and just shouldn't be happening as I take a contraceptive pill that stops all that nonsense. I did what I always do and tried to ignore it, figuring it would sort itself out.
By 2:30am Friday morning I was considering calling 999 for an ambulance. I was now blacking out for brief moments with the pain and realising this wasn't my period. Had I been fully conscious at this time I would have called 999 but I couldn't so I lay stranded on the couch in a daze.
I don't know why it took me so long to work out what was causing the pain. It was the pain itself that was confusing me as it was diffuse and felt like the whole of the inside of my abdomen was on fire and there was a rhythmic quality to it. It wasn't adhesion pain as that is sharp and colicky. It was the absence of passing urine that alerted me to the fact that my bladder had effectively gone on strike. Not wanting to panic my husband I grabbed a hot water bottle and tried to ride it out. I have suffered short periods of time where my bladder has walked out on me demanding better pay and conditions but it had always seen sense and resumed work without any fuss. My bladder tried in vain to work releasing pitiful amounts of urine but by 7am I had to admit defeat. I woke my husband and told him I needed him to stay home from work because I believed in the next few hours I would be travelling to hospital.
As usual not wanting to go to hospital I used delaying tactics and asked my husband to ring our doctors surgery for a home visit. At 1230pm my gp rang, I explained my symptoms and he asked me how I felt about having a catheter. My response was "I don't care anymore just stop this pain". I laugh at this statement now because a little over 24 hours from that statement I would be enduring the kind of pain where if you told me the only way you could stop it was to kill me, I don't think I would have given it a second thought.
By 2pm my gp was at my house. I don't believe he was on the rota for home visits that day, he had cleared a space in his schedule and nipped out to see me. As soon as he walked into my bedroom (I was confined to my bed as I couldn't walk. My bladder was so distended at this point the pressure made my vagina feel like it was being turned inside out) I burst into tears. Since leaving work I rarely cry (now that speaks volumes doesn't it?) and I think since 2011 when I first met my gp I've cried on him on only one previous occasion.
He was an angel, he informed me that urinary retention makes you extremely agitated and emotional and that along with the pain in my abdomen I was showing text book symptoms. He rang the district nurse and the conversation went " I am with Rachel now and she needs a catheter, when can you be with her?". He was so organised he had spoken to the district nurse already and had her primed and ready to go.
By 2:50pm my shiny new catheter was fitted however relief was not instant. Initially it didn't drain a thing, the nurse was most perplexed as she had never had that happen before. So she asked me to stand up and take a drink. With that it started draining and although uncomfortable, in the couple of hours after it had been inserted it had drained 2 litres, by morning it had drained over 3.5.
Saturday morning I felt fabulous (compared with the previous day) my fashion forward accessory was working like a dream. I lost count of how much I emptied but it was several more litres. Around 2pm in the afternoon I started to get that familiar burning feeling again in my abdomen. I also noticed that the catheter was no longer draining. As the pain wasn't bad, just uncomfortable I googled my symptoms. It did indeed appear that my catheter could be blocked or that I was having some bladder spasms. The treatment of these involved opiate pain killers and buscopan ( a muscle relaxant usually used in the UK for the treatment of irritable bowel syndrome) as I had both of these to hand I took some and tried to get some rest.
All afternoon I soldiered on, hubby was working, doing a reduced shift as I didn't want to be left alone all day dealing with a catheter and not feeling great. He arrived home at 6pm and by then the pain was getting a little unbearable. By this point I had only passed 100ml of urine in six hours and had drunk more than 2 litres.
I am a great believer in distracting yourself when in pain and trying not to acknowledge it. I don't like giving into pain as once you do its very hard to get it under control. I had hung on so that hubby could work, now he was home it was like the dam had been breached and I couldn't keep up the charade any longer. It was getting ridiculous so I rang 111 the number you ring in the UK for out of hours medical help.
That call was useless, despite acknowledging that I was indeed in a lot of pain, I was informed the minor injuries unit doctor didn't feel confident enough to deal with catheters and the nurses were busy. Whilst speaking to the doctor I broke down and with that the pain increased ten fold. I was told that I would have to make my way to the large hospitals A & E department a 15-20 minutes car ride away.
At this point I considered looking on YouTube to see if they had a video on removing a foley catheter - thats how much I didn't want to go to hospital.
I didn't want to call for an ambulance as I knew my call would be coded as green call, meaning non life threatening and if they were busy I could be waiting 4 hours or more. So some how I made it to our car and we set off. Every bump in the road felt like someone had inserted barbed wire into my nether regions. To the casual observer I probably looked like I was on my way to the maternity hospital with all the puffing and panting I was doing!
Accident and Emergencies was packed out we couldn't get parked outside so we had to make use of the drop off zone. Reception has glass in front of the staff and a very high counter. Meaning when sat in my wheelchair I can only see the top of the head of the person sat behind the glass. I asked the receptionist if she could move to the wheelchair access desk as I couldn't see her and was told " No the computer isn't switched on and I can hear you so its ok!" Well it wasn't ok for me to be shouting at the top of someones head and I will be writing to the CEO of the hospital.
Whats the point of having a wheelchair access desk if you refuse to use it? Its just a window dressing and apparently as a disabled person I am not supposed to be able to speak for myself or access that department. Wherever possible I speak for myself and to be denied a face to face conversation at your first point of access in hospital is degrading.
I had to wait for about 20 minutes to be triaged. Normally I would say that was ok. A cut hand with pressure applied (as long as its not an arterial bleed) can wait, when your bladder is in spasm and you can't speak through the pain 20 minutes is an eternity. Especially when you know that you are waiting to be triaged and you will have a longer wait once through into the magical area known as minors or majors.
Once through into minors the luxury of a bed wasn't forthcoming. I was forced to remain seated in my wheelchair, when I needed to be lying down or curling into a ball. The spasms were gaining in their ferocity and I was forced to sit and watch as 7 nurses and healthcare assistants stand around chatting for 20 minutes under the guise of a "handover" oblivious to my suffering and the woman next to me who in her 70's had dislocated her shoulder and was screaming in agony.
Having witnessed her cries go unnoticed I knew shouting and screaming was going to get me no where. I dont tend to shout and scream when I am in pain. So I surprised myself when I began to sob uncontrollably. My body was shaking with the pain and I was beginning to be unable to keep myself in my wheelchair. Even now I don't know how I remained conscious, I didn't think it was humanely possible to endure that amount of pain. Even now I am finding it hard to find the words to describe the ferocity and the sheer agony of it.
With the prospect of my pain getting under control seeming hours away, I am not proud but in a moment of sheer desperation I told my husband to tell the nurse that I had bypassed my catheter and was now sitting in a pool of urine. Nothing gets a nurse or healthcare assistant moving like the prospect of having to deal with body fluids. There was a small element of truth to what I said, I was bypassing my catheter but it was more of a dribble than a gush and although my trousers were not wet, my underwear was soaked. Within 2 minutes I was on the unoccupied gurney that stood less than 5 foot away from me. However as I was trying to climb up on it the worst spasm to hit me came and I was shrieking in pain.
To an outsider it must have seemed that the dislocated shoulder lady and I were in competition with each other, as no sooner did I start wailing like a banshee she started as well.
The nurse was talking to me but what she said I had no idea. All I can remember saying to her was "I've had a partial bowel obstruction and I can tell you it was a fucking cake walk compared to this". Which was followed by more shrieks of pain. I was on the gurney for less than 5 minutes when a doctor came in.
For some reason everyone (medical staff wise) kept assuming that I was a long term catheter user. They didn't seem to understand that it had only been placed the day before. When they did get that I wasn't a long term user they kept saying it had been in a week. When you are sobbing, screaming and swearing having to keep correcting medical staff because they just won't listen to you it is not an ideal situation. Its bad enough having to explain my medical condition when I am not in the throes of a bladder spasm but when you are your most vulnerable and your life is in their hands its not reassuring.
I was f'ing and blinding the whole time I spoke to the doctor. I must have seemed like a woman possessed.The doctor explained that they would take the catheter out and put a new one in, which was greeted with my shrieks of "no just take this fucking thing out and let me have a wee (may have said piss can't remember exactly)". She explained to me that they had to get the urine out that had accumulated inside me and the only way to do that was to put a new one in. I wasn't a happy camper, it didn't seem logical that you would replace the thing that was causing so much pain. I acquiesced hoping that this would stop the pain. As the spasm wore off I apologised to the doctor she told me there was no need to apologise, this was an extremely painful condition and if she looked up bladder spasms and urinary retention in a medical dictionary my picture would be there. For once in my life I was presenting in a text book way, if I hadn't been in agony I would have cracked a smile.
Whilst we waited for the treatment room to become free a wave of nausea hit me. I had nothing to be sick in, my husband was standing beside the bed. All I could say was "watch your shoes" as I projectile vomited onto the floor. Hubby and I haven't stopped laughing about this since it happened. It was bloody awful at the time. As I hadn't eaten for hours the projectile vomit was pure bile and then I dry heaved for the next few minutes. The dislocated shoulder lady seemed to sense the competition on the noise front and started to scream again. My husband was losing his rag, his wife was in agony, throwing up over the side of the bed and next to us was a lady begging him to get a nurse. It was an awful situation for him to be in. He told her she would have to wait for me to stop being sick before he could help her and get a nurse.
A really lovely nurse, the one that rushed to get me on the gurney and tried to comfort me when I was acting like one of the ladies giving birth on "One born every minute", popped her head around the curtain. She stroked my shoulder whilst I apologised for the mess on the floor. She assured me that she had seen worse, she knew I was in agony and they would be sorting me out as soon as the room was clear. As I was inbetween spasms I was able to ask her to help the lady next door out. She was clearly in so much pain, when you watch "24 hours in A & E", shoulder dislocations are identified as extremely painful, people are given morphine and gas and air. They aren't left in a chair and ignored for over an hour.
Despite the pain I was in, her cries hurt my soul. Hearing such distress coming from an elderly lady broke my heart when her pain could have been brought under control and she could have waited in relative comfort for her shoulder to be realigned. Whats the point in putting posters up on the walls of A & E departments telling patients to let their nurse know they are in pain, when they are ignored. Its a waste of paper and a waste of the blu tack sticking it to the wall. It wins the emptiest gesture possible award.
Welcome to David Camerons vision of the NHS, where old ladies scream in pain because there are too few doctors in an accident and emergency department to prescribe morphine.
I was wheeled through into the treatment room and within 10 minutes the old catheter was out and a new one placed. Only much to everyone's consternation there was no urine draining into the bag. I wasn't surprised for a while I have suspected that I suffer from Fowlers Syndrome. My sister suffers with this condition and has just had a sacral nerve stimulator fitted.
With Fowlers Syndrome the neck / valve of the bladder is too tight and will not relax (as it would do normally) to allow urine to flow from the bladder. Sometimes when you catheterise a patient with Fowler's syndrome you can place the catheter but then the valve slams shut around the tube so it stops urine flowing and that is exactly what happened to me ( and it had happened to my sister in the past). Unfortunately along with Ehlers Danlos syndrome and Autonomic Nervous system dysfunction the doctor and nurse treating me were completely clueless. As the catheter wasn't working I was now being admitted under the surgical team.
Although the doctor never said it, I knew that if the catheter failed to work I was facing an operation to have a suprapubic catheter fitted. I hate it when doctors think you are an idiot. All she would say to me was "well the surgeons deal with catheters" I wanted to say "no they don't urologists do" but over the years I have found to my cost that doctors don't like it when you know more than they do. I had already presented them with three medical conditions they had never heard of.
I stood, I drank but the urine never dropped into the bag. I had released all of 100mls and of course that was taken for the obligatory pregnancy test and dipped to check for infection. You know my feelings about pregnancy tests!
With the catheter not working and my admission onto a ward reasonably imminent I was swabbed for c-diff and MRSA again. However this time it was only my nose and throat. I dont understand why I was intimately swabbed on my planned admission and not on this occasion but hey ho. Then the fun and games began with finding a vein to get a cannula in.
I will never understand why doctors or nurses (but not phlebotomists in my experience) don't believe patients when you tell them your veins are shite. If I am ill my veins will shrink away and be difficult to find. Add in Ehlers Danlos Syndrome and you end up with veins that have the consistency of an elastic band. As the needle approaches them they shift away. Medical professionals that have never come across this then proceed to dig around until they blow the vein or cause such pain that you pull away. Despite me telling the doctor my veins would be hard she gave it a go. I stipulated that she could stick me with the needle as many times as she wanted but she wasn't to dig around. I also said that there was no shame in calling the vascular access team. In my experience you have to be patient with my veins. You can't stab at them wildly and expect them to play ball.
Taking this on board she put the tourniquet around my forearm (I am still bruised) made me hang my hand over the side of the bed and she placed a latex glove filled with hot water on the back of my hand. She did listen and I am grateful for that. It took well over 5 minutes to get the needle in, whilst she was doing it she kept saying "does this constitute digging?" as she gently probed the vein. She was very patient and calm whilst she was in fact digging and it didn't hurt. She got the needle in and then as usual my vein wouldn't give up any blood. Eventually after re-applying the hot water filled latex blood we had some joy. When she finished she exclaimed "oh my word, I have never seen veins behave like that". Thats the fun of EDS I told her.
To be continued........