Emergency Admission / Weekend from hell part two

*WARNING*

 

As with part one of this post I am going to warn you now, it will contain graphic content, if your eating stop reading now, if you have easily offended sensibilities this post is not for you. The language contained in the post will be a little fruity, think drunken sailor on crack! I apologise in advance but this is going to be a “real life” post and there will be no fluffy bunnies or unicorns featured within it. This is what its like to be chronically ill.


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. 

 

 

 

*    *    *    *

 

After the doctor had finally cannulated me and got the blood she needed she got the nurse to draw up three different drugs. The first was Zofran (generic name Ondansetron) an anti sickness medication, the second was oramorph and the third was buscopan. As soon as the nurse started to inject the Zofran my arm was on fire. I have had IV meds that had stung / burned before but she had given no warning this would do so. As she then put the buscopan in the burning got even worse and I started to scratch at my arm. As she got halfway through administering the morphine I told her to stop. She told me “morphine can make you itchy” I told her “I take morphine regularly but it doesn’t make my arm itch, it makes my legs and abdomen itch”. She then said she would flush the cannula to see if that helped at all, it made it worse and I begged her to stop. As I looked at my arm every vein had turned bright red and the underside of my arm from the wrist to above the elbow looked like it had been scalded by boiling water.


The nurse promptly checked my blood pressure which was fine (actually a little high for me at 114/80 but I was in pain) and then left the room for 20 minutes. Now as I always say I am not a medical expert but if someone is having a violent reaction to a medication and has nearly been in anaphylaxis before, would the “safe” thing to do be to leave them in a room with the door shut and unable to call for help if the reaction got worse? My answer would be no but apparently thats a perfectly safe thing to do at my local hospital.


I kept setting off alarms on the monitoring equipment, when I am very tired or in pain I stop taking breaths. Its not deliberate but its like my body forgets to breathe. My oxygen saturation did not drop below 100% (which as a smoker and sometimes heavy smoker I was pleased about) but I was now going for over a minute without taking a breath, the alarm sounds at under 8 breaths a minute. This isn’t the first time I have set monitoring equipment off in this department and every time it provokes no response from the medical staff. Thats a little disconcerting when you are in the middle of an allergic reaction!


Eventually the nurse came back into the room with a porter and I was informed I was being moved up to a ward. The nurse that had been “treating” me, seemed to have a compulsion to pull on the catheter tubing at every available opportunity, despite me telling her that this really hurt.


I have no pain at all when a catheter is fitted (which is odd as on some websites the pain associated with this is on a level with a lumbar puncture). My pain starts as soon as the balloon which keeps the catheter in place is inflated. After that for about 12 hours I can’t sit down without pain and any slight tug or knock of the tube is excruciating. Despite telling the nurse this it seemed to be her mission to mess about with the tubing at every opportunity. So yet again I was in agony due to someone else either a) disbelieving what I was telling them or b) she just didn’t care.


I thought I would be heading for EMU (emergency Medical Unit) which is an awful ward to be on. The nurses are terrible on this ward, having been on it on several occasions, I can tell you a crash course in empathy, compassion and the basics of nursing is needed. Instead I was going onto a “proper” ward with proper nurses you know the caring kind that Florence herself would be proud of.


I was seen by the nurse on this ward within minutes of being admitted. I am really sorry but I can’t remember her name. She was a bubbly blonde woman with a lovely brummie accent. She did everything properly, I was asked about my mobility, how they could help me (with toileting, washing and dressing), who my next of kin was, religion, diet and how my bowels worked etc. This is how it is supposed to be done, by someone who asks probing questions and assumes nothing. This nurse and the other nurses and healthcare assistants on this ward are a credit to the hospital and if I am honest had I not had that kind of nursing care I would have discharged myself.


I probably sound like a stickler for rules and possibly a person with aspergers tendencies. I am not that person, I do however get infuriated by laziness and assumptions. Laziness and assumptions don’t provide good medical care. As a medical professional you need to listen and understand your patient. If they don’t do that I start to lose faith in their abilities. A patient is a person, not a condition or a plaything for you to practice your skills on. Treat me with courtesy, respect and that I am not an idiot and it will go a long way. Treat me as if I am below average intelligence and without respect and you will have a hostile patient on your hands. Its a shame more medical professionals don’t apply that approach, yes they have medical knowledge but learning about a disease or condition does not make you the expert. Living with it 24/7 does.


At around 1am I saw a student doctor. Now normally I enjoy interacting with student doctors, they are young, enthusiastic and eager to absorb any information they can about a condition they haven’t come across before. This one seemed to have a language processing deficit, not ideal. Again despite telling her the catheter had only been fitted the day before, the conversation seemed to be a little like the film groundhog day. I dont know why it was impossible to believe that it had been fitted on Friday, it was now the early hours of Sunday. But she was insistent the catheter had been in for a week. I wish that I had brought in the paperwork from the district nurse when I set off to hospital as clearly as a patient I was unable to distinguish 24 hours from a week. Maybe she had the assumption that as I used a wheelchair my disability was mental rather than physical?


As a good patient and a professional sick person I had brought all my medication with me. Yet despite all this the student doctor added medications that I don’t take to my drug chart and got the dosages incorrect. Despite having all the pharmacy labels on them. How that is possible? I am at a loss to understand.


She was very through in her exam, my abdomen was palpated and my chest was listened to. She then did a basic neurological exam, checking the power in my legs and my reflexes. It startled her that my left leg was cold whilst my right leg was hot. Again having repeatedly told them that my autonomic nervous system is screwed, I couldn’t understand why this would be so “amazing”. 

 

I am interested in medicine I always have been. Plus without this basic understanding I would never have discovered what was wrong with me. However she nearly died of shock when I told her that I knew she was checking for cauda-equina-syndrome. I knew that this check would culminate with a finger being inserted into my rectum. Having had numerous operations on my bowels no hospital visit would be complete without this examination!


She disappeared outside the curtain and then returned with a nurse. I asked “are you selling tickets?” the nurse laughed but the joke seemed lost on the doctor. As I assumed the finger up your bottom position, the nurse tried to explain what was happening, I interrupted explaining this wasn’t the first time I had been subjected to this examination. The weirdest thing about it was you have to grab the inserted finger with the muscles of your anus. It takes a little bit of thinking about as its not something one does on a regular basis. I passed with flying colours, although I am a little unsure if thats something to boast about?

 

Doctors that treat me are always obsessed about constipation due to the opiates I take. I rarely suffer from constipation I can open my bowels up to four times a day, despite all the morphine I take. I am coming to the conclusion that this annoys them as I should be on a diet of laxatives like most people would be when they take opiates. The only thing that does make me constipated is codeine.

 

 As she whipped her finger out of my rectum she said ” Your rectum is completely empty, you’re not constipated”. Now having informed the doctor of the fact I don’t suffer with constipation, this wasn’t a surprise to me. My bowels are so regular you could set your watch by them. Sometimes like on early Saturday morning when my bowel had switched off on the Friday as my bladder had done, it went into freak operating mode and I was stuck on the toilet for 90 minutes. Again the doctor wouldn’t believe me that I didn’t have diarrhea, it was normal stuff. I wanted to place a bet with her that at 8am I would have a normal poo but as she hadn’t listened to anything I had said previously it would have been a wasted effort. And yes bang on 8am I had a poo (in case you were wondering!).

 

As this student doctor was on a surgical rotation I expected her to have a little knowledge about surgery – silly me. She had clearly read my notes as when she saw the scar on my stomach she asked if that was from the intussusception at age 3. I told her no, that was a scar from having adhesions removed in 1998 and subsequent exploratory operations, the last one being in 2002. She then spent a couple of minutes looking at my abdomen. She said to me “I can’t see any scars form laparoscopic surgery”. 

 

Despite it being gone 1am, I knew I was dealing with an idiot (or if I wasnt writing a blog a FW – you work out that abbreviation!). Surgery increases your risk of adhesions by about 50%, I had already told her I had adhesions removed in 1998 – so thats 2 surgeries. Once you have bad adhesions, as I do, laparoscopic surgery isn’t possible. A student on a surgical rotation should know this, its a basic piece of knowledge. Plus if she had felt my scar and  around belly button you can actually feel the thickening of the tissue and the bottom of my scar is tethered meaning it goes through the skin and has stuck to the abdominal wall. Maybe it was her first day but I wasn’t the one pretending to be the expert. Which is what annoys me about some doctors, they poo poo (pardon the pun!)  what you tell them as they can’t stand it when the gaping holes in their knowledge are exposed.

 


As we were going through my medications the doctor asked me if I was allergic to IV morphine. I nearly choked, I asked her why she had said that, apparently the nurse from A & E had written in my notes I was allergic to it. I angrily pointed out that as I had been taking morphine for two years ( shoved the packet under her nose) and buscopan all day (that packed was waved at her also) didn’t she find it more likely that the reaction I had suffered would have come from an IV medication that I had never had before? To me that seems logical but apparently not for this doctor. I asked her to write the name of the anti sickness medication down to ensure that I am never given it again, which she did.


The ward was noisy and sleep was elusive. I came to the conclusion that I would have had more sleep had I curled up on the floor of Paddington station. Patients  were in and out all night. Doctors were taking medical histories at 3 in the morning. It was a hive of activity but a place of sleep it was not.


Overnight I had drained 1800ml into the catheter bag, another impressive feat. I had less pain, no spasms and was in general feeling a lot better. When I am feeling better I want to go home and not linger. 


As no one had secured my medications in the bedside locker, I self medicated my morning tablets. I had already missed my evening ones and due to that my back was throwing its usual hissy fit when it comes into contact with a hospital mattress. Yes you heard right on this ward controlled drugs were not confiscated on admission. On this ward the nurses gave me the “self medicating” disclaimer form to sign and then put my medications into a locker. They checked through my drug chart to ensure that I had taken everything and thats when we discovered the student doctor had entered medications on my chart that I didn’t take. I explained to the nurse the error, it didn’t seem to come as a surprise to her, which was worrying. She asked me what doctor I had seen “was it the one with the red hair?” Obviously her reputation precedes her.


Breakfast was served just after 8am and as it was the first thing I had eaten in close to 24 hours I then promptly fell asleep due to a post prandial hypotension episode. I was woken up by the sound of voices, my case was being discussed whilst I slept. As a patient it was quite clear my actual presence wasn’t necessary. 


On seeing that I had come to the Surgeon in charge introduced himself. Then the idiot student doctor continued her patient presentation. I watched her and as she said “This patient has been diagnosed with Ehlers Danlos syndrome hypermobility type, the patient states she also has autonomic nervous system dysfunction” she paused and rolled her eyes. 


As she was stood to the side of me, I think she thought I couldn’t see what she had just done. I don’t state I have ANS dysfunction my medical records do and the medical tests I have endured prove it. If they don’t believe the diagnosis how on earth can they look after me? This was like a red rag to a bull and I hoisted myself up so that I was no longer lying flat on my back.


The surgeon then said ” right we are white carding you to urology, who you will see tomorrow and then we will go from there”. I then responded with “I am sorry, I am sure you’re a lovely person but I am not staying. I dont play the hospital game of lying around waiting for a department to fit me in. My plan is you take the catheter out, I prove I can urinate and then I go home.”


There was a collective gasp from the junior doctors who had accompanied the surgeon to my bedside. He responded with ” You can’t go home, you are in urinary retention”


Me: ” No you don’t seem to understand me, the catheter is coming out and I am going home”


S: ” You are being stupid, you’ve had two bouts of urinary retention in 48 hours”


To which after being called stupid I said 


” The catheter caused the last bout of urinary retention by causing my bladder to go into spasm. I want it out and I am going home” 


By this point I was incredibly angry at being called stupid, I don’t think a doctor has ever called me stupid before, well not to my face, possibly hidden away in my notes somewhere. Had he actually asked my opinion and explained his position instead of presenting it as a fait accompli I would have listened. But he was an idiot and continued


S :”You’re being stupid, I will let you go home but you have to keep the catheter in”


Me :” No I am going home, you are taking the catheter out and then you are referring me as an outpatient to urology. I don’t do hospitals and I don’t feel safe here” 


S: “You’re being stupid, you won’t be able to urinate once the catheter is removed”


Me: “If the catheter is removed and I can’t urinate, I will stay. If not I am going home.”


At this point the surgeon, who I believe had never had his authority questioned before gave up.


“Get the catheter out and she can go home” He then flounced off taking his minions with him.


I will state for the record here I am not a doctor and I am not suggesting I know better than the doctors caring for me. If you are in acute urinary retention you need medical help and you need it quickly. I take responsibility for my own actions. I strongly urge you to follow your own doctors advice.

 

 

However lets look at the facts 

 

– my bladder was no longer in spasm


– the catheter had drained 1800 mls overnight and was continuing to drain, therefore I was no longer in urinary retention.


– the second bout of urinary retention had been caused by the catheter either a) being blocked or b) the valve at the base of my bladder clamping down on the catheter.


– The student doctor had written my drugs chart incorrectly


-The medical staff had no basic understanding of EDS and the fact my bladder can stretch well beyond the size of most individuals making it floppy when emptied and likely to block the catheter again, leading to more painful spasms which I wanted to avoid.


– I had suffered an allergic reaction to IV Zofran and it had been ignored.


– They wouldn’t believe me when I told them the catheter had only been in since Friday.


– I had been left in excruciating pain for over an hour in A & E. When it was actually a quick fix.


– And the one that sealed the deal, they didn’t believe that my ANS is screwed


Ask yourself if you would feel safe in that environment? Would you want to stay?


I know I am not a medical professional but I knew that there was nothing to be gained from staying in hospital other than back pain.


Within minutes of the doctor leaving my bedside the nurses had removed my cannula and my catheter. As the nurse was removing my catheter she whispered ” I don’t think anyone has ever stood up to him before, well done. You manage your illness brilliantly and we know that you can go home safely. Just promise me if you can’t urinate, you won’t go home”


I solemnly promised her that I would let her know if I couldn’t wee and wouldnt leave the hospital if that was the case. I also promised that If I had any issues at all that I would return. I told her I wasn’t stupid but I wasn’t staying either.


A weaker more vulnerable patient may have been intimidated by the surgeon and his groupies. Unfortunately the older I get the less impressed I am. Having dealt with surgeons before I know that unless they can cut it out and play operation, they rapidly lose interest and then you are palmed off to another ward. Or left without a treatment plan for days on end. I wont play the hospital game anymore. I maybe coming across as  rude or arrogant but I know my body, my body doesn’t follow the rules laid out in medical textbooks and until I meet doctors who actually believe in my illness and have taken the time to educate themselves, I don’t trust them, its as simple as that. To me it would be like treating a diabetic having no knowledge about the disease / condition process. The outcome wouldn’t be good, well my condition is the same.


I did not feel that my condition warranted a hospital stay, most of which would have been massively unproductive as I have since found out my local hospital has no urology cover every other weekend. The earliest I would have been seen was sometime on Monday. At home I can manage my condition and I have a treatment plan as I consulted my gp first thing on Monday morning. Who agreed with my decision to leave – in case you are wondering.

 

I escaped from hospital with the aide of the nurses by 1020am. I didn’t wait for my discharge papers as one of the nurses had warned me they would mess me about producing them. They would either be emailed or sent to my gp. Having been in this situation before I knew it could be 2pm before I received them due to the doctors doing their rounds and writing up any orders for the nurses for all the patients they had seen. 

 

I got a hug and a kiss from the nurse who had been looking after me. I know I wasn’t there to win a popularity contest but I think it speaks volumes when a nurse treats you like this.

 

I have emailed a complaint to my local hospital and they now have 45 days to cover it up,  investigate it.

 

I am home and now living in fear of it happening again. Every time I struggle to urinate or get the burning pain at the top of my pubic bone I wonder if its starting again. Its not a fun way to live.

 

I have included two links below which I have found incredibly useful and they explain a bit about acute urinary retention and the catheterisation process. As acute urinary retention doesn’t happen that often in females (other than post operatively or due to infection) it was difficult to find information relative to me.

 

Thanks for reading.


How a catheter should be inserted, protecting the patients modesty during a deeply invasive procedure

 

The journal article I used on Saturday afternoon so I knew how to treat the initial bladder pain



Emergency admission / weekend from hell part one

I’ve just had the weekend from hell, in a less than great month. 2014 is officially shit. Two bouts of cellulitis (3 if you count the fact the one on my knee came back) and then a rather dramatic Emergency admission to hospital. The last 4 weeks have been far from plain sailing.

 

*WARNING*

 

I am going to warn you now this post will contain graphic content, if your eating stop reading now, if you have easily offended sensibilities this post is not for you. The language contained in the post will be a little fruity, think drunken sailor on crack! I apologise in advance but this is going to be a “real life” post and there will be no fluffy bunnies or unicorns featured within it. This is what its like to be chronically ill.


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. 

 

*    *    *    *

 


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 in between 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……..

My hospital stay – part two

I am well aware in my last post that I didn’t even touch upon the whole point of my admission which was the octreotide trial. If you’ve read the last post you will understand why!

 

My admission for the octreotide trial was planned, although the first admission date had been cancelled it went ahead the following week. My understanding of a “planned” admission is that all medications, tests, and the like have been ordered and are ready and waiting and that staff have been briefed about why you are being admitted and given a clear view of your medical condition so that you receive optimal care.

 

Maybe my expectations are too high, I come from a retail background where daily we did things like handovers, planning and contingency plans. Everyone (99% of the time) was briefed, knew what role they had to play in the endeavour and someone was responsible and accountable for the plan being executed. If any part of the plan did not deliver, we would look at the root causes of what went wrong and ensure the same mistake didn’t happen again. Sometimes events happen that you could not have foreseen but this is how a business operates and to a large extent ( I am not saying the NHS should be carved up by private companies I am 110% against that) the NHS should be operating ( where it allows ) along these models. By not doing this it means its opening itself up as a target for those who want to do away with this magnificent organisation which is a tragedy. There does need to be serious reform, layers of management stripped away, investment in frontline staff and not the closing down of local emergency medicine units  but what it needs the most is communication between staff / departments and between medical professionals and patients.

 

Why is it people set so little store by communication? It amazes me, as communication is key within any organisation, the NHS even more so when failing to communicate can lead to serious mistakes costing lives.

 

The first major obstacle when arriving on the ward was the staff, although having had access to my medical notes, clearly had very little understanding what severe autonomic dysfunction was or how it affects me. They talked about my condition in front of me but at no time actually asked me. All they perceived the problem to be was low blood pressure and an increased risk of falls, if only! This lead to the ridiculous situation where they insisted I was escorted to the toilet (which never happened, due to me making my own way there and back) and insisting that I was accompanied and watched whilst showering but that was the extent of my care. 

 

Yet at the same time when they made my bed the following morning they were quite happy to leave me standing whilst I waited for them to finish as they had placed all the clean linen on the chair. Leaving me the only option of sitting on my wheelchair, whose brakes had been left off when they had moved it, so I rolled back into the bedside cabinet. Face Palms!

 

It was agreed that the octreotide trial would start the first evening of my stay. However the pharmacy seemed reluctant to give the medication to the ward. Despite being notified of my admission and being chased up from 3pm onwards the octreotide did not arrive until 18:45. My dinner had been served at 17:00 so I had to sit and watch it slowly congeal as the drug needed to be administered before I ate. I also had the domestic staff popping their heads in every ten minutes asking why I hadn’t eaten, “did I not like it?”and “did I want something else?” I can’t fault them for this approach, on a dementia ward it can be a battle to get some patients to eat. I was bloody starving having not eaten through nerves, so inside I was crying knowing that I would have to wait until the octreotide arrived.

 

 

Congealing baked potato with baked beans and a yogurt warming to room temperature!

 

Eventually I got my injection and a cheese sandwich was located for me. I have found a cheese sandwich is the safest option for a vegetarian when in hospital. (It probably doesn’t contain vegetarian cheese but I am not that strict when it comes to cheese etc). People still seem to struggle with the concept of vegetarianism. Once when admitted on another “planned” admission I was given a baked potato with Tuna and mayonnaise as the vegetarian meal. The nurse was quite miffed when I pointed out this wasn’t a vegetarian meal. She hastily scrapped the tuna off my baked potato and handed it back to me. I managed to piss her off again when I said that I wanted something else, opting for a cheese sandwich that was prepacked and had no meat surreptitiously scraped off it. Eating off the hospital menu is much safer as it accommodates for all, however arrive in the afternoon when the person who vacated your bed prior to your arrival, has ordered from that days menu and that’s what turns up as your evening meal, vegetarian or not!

 

I still had a small postprandial episode, I was expecting as much due to not having eaten all day. Plus a sandwich is pure carbohydrate and that makes it much worse although with me any food group will do it. I did notice that although I ended up falling asleep for 20 minutes I didn’t wake up as confused (for some reason though I woke up and thought I was back in my bedroom at my parents house, where I haven’t lived since 1996!) and the tachycardia that preceded my doze wasn’t as forceful. This was exciting stuff as it meant the drug was working. I did have a small amount of gall bladder pain and a bit of bloating but it was minimal.

 

My octreotide was being used in an off label way to treat postprandial hypotension by stopping the blood pooling in my abdomen. The staff were familiar with the drug having issued it to patients before just never in this context which became abundantly clear the following morning.

 

At 6am I was awoken by the nurse that I had argued with about pain relief and bedsores. She was brandishing a hypodermic needle and telling me it was time for my octreotide injection. Having been in hospital more times than I care to remember, I knew that breakfast would not be served until at the earliest 8am. The injection was supposed to be administered 20-30 minutes before food. So we had a problem. I asked quite casually if breakfast was coming shortly and was informed no. I pointed out the injection had to be done shortly prior to food, I was informed breakfast would be in the next few hours and was that ok? The obvious answer was no. I have to give credit here to the nurse, although we clearly didn’t get along, she suggested she got me some toast and a cup of coffee and then she would do my injection. Disaster averted.

 

In my notes the time given for my injection was 6am, which had been written up by either a doctor who hadn’t seen me, doctor nice but useless or someone who had forgotten the purpose of my stay. Another error of communication, or staff ignoring the instructions of others. This was starting to grate on me that my case wasn’t being handled properly. It was only the fact that I was alert enough and strong enough to advocate my own care that this injection was not administered without food. Which I now know through accidentally forgetting to eat after giving myself an injection would have sent me into a full on hypoglycemic attack.

 

Injection administered I happily ate my toast and slurped my coffee. I noticed that after my injections I was getting a strange headache in the base of my skull and a strange feeling in my tongue accompanied by a metallic taste. I hadn’t had the horrific reaction I had feared which is usually projectile vomiting and profuse diarrhoea. Hence why I had packed numerous pairs of underwear and pajama bottoms!

 

My consultant popped his head around the door at around 9am, I had a frank discussion with him about the fact that staff were trying to give me the octreotide injections without food and that my pain wasn’t being managed. He told me that he thought that I would be better off at home where I could look after myself, administer my own pain medications etc and that he would keep me on the same dose that I was recieving now. As we were coming up to the Easter bank holiday he also gave me his own private mobile (cell) phone number to contact him If I had any problems. A&E or an emergency doctor, which would be the only healthcare accessible over the bank holiday weekend would be unable to deal with my case. Far better should things go pear shaped over the weekend that I should be able to contact him directly. I was touched by this gesture, some people may say its just good doctoring and whilst yes it is, this level of care or compassion had never been shown to me before in a hospital setting. With most hospital doctors I have found its a case of out of sight out of mind. Dr B would surprise me again in a few days time.

 

I would only be allowed to go home on that day, if I had been shown how to inject the octreotide. I was told that a nurse would come and show me how to do the injections and would make sure I was happy with it before I would be discharged. That was the theory, in practice the only words to describe it adequately are piss poor.

 

At 12:30pm my nurse came in with all the kit ready to show me how to subcutaneously inject my octreotide. I asked if lunch was on its way as the exercise would have to be abandoned if it wasn’t. I wonder how many of you have guessed what happened next…

 

 

An arty shot of the injection kit left in my room because you guessed it lunch wasn’t coming!

 

An hour elapsed before lunch arrived and no sooner had my plate been set down my nurse arrived to “teach” me how to inject. I have put the word in teach in inverted commas as it was a joke. No diabetic patient who injects multiple times daily would have left hospital with such a brief teaching session on injecting themselves. I was handed a syringe asked to load a certain amount into it and check for air bubbles. All of which I did ok. I was then told to pick a spot on my stomach, pinch the skin and inject myself with the diamond shaped side of the needle pointing upwards and push the plunger down. Again I did all of this ok however I wasn’t told to release the pinched skin and count to three and then remove the needle. I removed it with the skin still pinched so a large amount of what I had injected oozed back out again. That was it, that was my teaching session on injecting myself. No oranges to practice on, no question and answer session, the nurse just packed everything up and left the room.

 

Injecting myself was no big deal but once I left hospital I actually learnt more from asking questions on facebook than I was ever taught in hospital which shouldn’t have happened. I found out that the gastrointestinal symptoms are much less if you leave having food until 40 minutes after the injection. I also learnt that octreotide injections can be drawn up and stored at room temperature for two weeks which means the injections sting less. 

 

In hospital one dose was taken from each octreotide vial and then it was thrown away. This meant 75% of an expensive medication was simply tossed into a sharps bin, thats criminal! I get three doses out of one vial, I lose 25% of the meds due to it being drawn up through one needle and then I change needles to carry out the injection but I am not throwing away 75%. This stuff doesn’t have to be kept in a fridge if being used in the next two weeks. So only one vial of the medication needed to be used during my stay instead of three. I know that this drug in Australia costs thousands of dollars a month to be on. Its expensive stuff, to not load other syringes up with it when you open the vial seems lazy and not cost effective. When I discussed this with my gp over the phone I could literally hear him rolling his eyes! When the NHS and the country is in a period of austerity why was this drug being thrown away? I could have been sent home with the preloaded syringes. They wouldn’t have gone to waste.

 

I managed to get home that night after a lengthy wait for the pharmacy to get the octreotide dispensed. The nurse in charge of my medications on discharge was the most miserable person I have ever had to deal with and I’ve met lots of miserable people over the years! She didn’t crack a smile once and answered any questions with as few words as possible. When I asked for a sharps bin to dispose of my used needles at home you would have thought I had asked for a bar of gold bullion. I had to remind her constantly to get my opiates out of the wards controlled drugs cupboard and also my steroids from the fridge.

 

I couldn’t wait to escape, just as we were about to leave a healthcare assistant that I have got to know over the last few years as she helps at Dr B’s clinic popped her head in to say hello. I was greeted with the usual hug and kiss from her which I could see from nurse ratchets expression did not go down well! After a brief chat with S, the lovely HCA we made a break for it, narrowly avoiding being crushed by the doors on the way out.

 

At home injecting was fine if a little nerve wracking. The first day I did it without my husband in the house my hands shook! Having heard how nervous I was he suggested that I draw 3 doses worth of octreotide up at one time and store them ready for injecting. That way I wasn’t putting pressure on myself to load up the syringes and then inject. A very sensible idea which has helped me loads!

 

In hospital I had been having two doses of octreotide a day so I continued with this. By the Sunday I had become very cocky and upped this dose to three, big mistake! I was up all night being hideously ill.

 

On the Monday ( Easter Monday) at 930am aprox my Consultant rang completely out of the blue, to check how I was. I told him things had gone ok until I upped it to three times a day. He told me not to inject that day and start again on the Tuesday at one injection a day.

 

I am still all these months later stuck at one injection a day as I can not tolerate anymore than that, which is a shame as it works so well. Presently due to the bouts of cellulitis, I have stopped my injections as the antibiotics I am on really mess up my innards. I am also loath to give myself an open wound every day when the cause for my two bouts of cellulitis in a month is unknown. Once I have stopped the antibiotics and been free from infection for a few days I will start them up again. Without them the postprandial hypotension has been a nightmare. 

 

My kit including the worlds smallest sharps bin (sarcasm alert!). And yes thats a dog biscuit tin that I am storing my needles and syringes in!

 

 

My hospital stay – part one

I have to bite the bullet and write this post. I have successfully put off writing it since my hospital stay in April 2014 but its time. 


I’ve been reluctant to write it as there is so much NHS bashing in the media and I don’t want to bash an institution that has brought me into the world and saved my life but like any large institution there are things that could be improved and my hospital stay was far from plain sailing. 


So if any of my readers are part of the NHS this isn’t an attack on you but please take a look at the points I am raising and look at the departments you work in. Are there things you could be doing better? Are there things that are happening that are wasting precious resources? Try and look at it as if you were a patient because if you forget that the patients are at the heart of the NHS that’s where things will go wrong.


My Consultant, a very hard working, caring, diligent man, a little caustic and with a dry sense of humour that can be hard to “get” unless you’re me and find him hysterical, is in essence a specialist in Geriatric Medicine / General Medicine. Which means whenever I speak to someone who has not come in contact with me before it leads to some confusion when I give my date of birth. I am one of his youngest patients. I came to him through being referred to the completely wrong clinic, initially he suspected that I had somatoform disorder – after all that’s what my notes said from all the other doctors that had ever seen me since 2007. He either took a chance on me when he agreed to a tilt table test or just did it to shut me up. Either way I am grateful that he listened to me when I produced my list of blood pressure and pulse readings at our first meeting.


Lets call him Dr B, I have given out so many pseudonyms in the past, I apologise if I’ve used this one before. Dr B is in charge of the ward I stayed on and its a locked ward due to the majority of his patients having dementia. Its not locked in the sense you can only escape by stealing the keys but unlike other wards in the hospital the doors close automatically and you have to hit a discreet button to get the doors to open. I have no problem with this, after all if your loved one is suffering from any form of dementia the last thing you want is to find they have absconded from the ward and are wandering the corridors. 


I’ve never been on a locked ward before so that was a little weird, plus it was a nightmare to navigate the doors for my husband who was pushing my wheelchair. There was a very small window of opportunity once the button was pushed to get me safely through without being crushed by the door.


On arrival we were informed that my bed wasn’t currently available and that we should go to the restaurant and wait for 30 Min’s. Again I don’t have an issue with this. A patients discharge can be held up for a variety of reasons and on the majority occasions its not the wards fault. When we came back we found the bed still wasn’t ready and we then had to wait in the staff room for over an hour.


 90 minutes or more later, my bed was ready and I was shown to my room. I had a small private room with a wash hand basin but no toilet facilities. This wasn’t ideal as it meant I would have to struggle to the toilet myself or call for a member of staff to help. The amount I drink due to excessive thirst meant if I called them continually for help I knew I would rapidly become their least favourite person.


As I have written in a previous post “Permission denied” I was swabbed for MRSA / C Diff – intimately. I had to provide a urine sample as because I am a woman I have no control over my reproductive system so I maybe pregnant. I know that people can be pregnant and not know about it but with zero maternal instinct contraception has always been high on my list of priorities. I understand they are covering their arses but it irritates me. I feel its like, you have a womb so therefore you have a reduced mental capacity. Do men have to provide a urine sample every time they rock up to A&E or when admitted to hospital?


 A short while later Dr B popped his head around the door and within the space of 5 minutes had dropped the bombshell that I would be in hospital for a week. My husband and I had planned for two days – the two days that we had been told in the previous November. I was furious as I had emailed Dr B and Dr B’s secretary in the weeks leading up to this admission asking about the length of stay and asking other questions. I never received a reply. I managed to bargain the stay down to three days. My husband had taken a weeks holiday the week before as that was when I was supposed to have been admitted. Because that was cancelled he had to take emergency holiday from work to be able to take me to hospital now. I explained that my husbands work were accommodating but this was unacceptable, that life existed outside the hospital, a life where there is a mortgage to pay, an economic downturn and employers making staff redundant. 


I understand that Dr B is a busy man, his clinic is expanding all the time. However this could have all been avoided if someone had just taken the time to communicate what would be happening during my hospital stay and the length that it would be. What if I had children and needed to sort out childcare etc, I had to sort out people to sit with my dogs as they can’t be left. So it threw all of our plans out and meant my husband had to contact his employer and tell them he may not be in work for one of the busiest weeks of the year (after Christmas).


I then had a nice friendly doctor come in and take a medical history ( again another colossal waste of time when you are resting on my vast pile of notes whilst taking it). This took over an hour and a half and I should imagine this doctor thought her visit to me was going to be a quick in and out. I had to spend the majority of the time explaining my conditions – now I could understand this if my admission had been an emergency but this was a planned admission, perhaps a perusal of my notes and a quick session on Google would have been quicker? It was also clear that she had no clue about EDS or Severe Autonomic Dysfunction, nice interpersonal skills but that won’t save my life in an emergency. I hate saying that on first impressions she was a really was a lovely person but like everyone else on the ward she was clueless about my condition.

 

Also after I left hospital I found that she had been a little creative on my discharge notes. As part of the history taking process she was supposed to examine me. This never happened however my discharge notes did not admit this omission. It was covered up with “on examination her abdomen was found to be soft and her lungs clear”. My lungs or abdomen had never been checked as she had never come back to check them. This is bad doctoring and is inexcusable if it is compounded by essentially lying on my hospital notes. So the “nice” doctor had lied another reason why I find it so hard to trust the medical profession.


As usual I asked if I could self medicate – I hate having to wait for my tablets when I am in pain. This isn’t a pop at the nurses, in the ward there clearly weren’t enough nurses or health care assistants and they were rushed off their feet. If I self medicate it means you don’t have to answer my bell and it saves you a job and it means I get my medications on time. I manage them perfectly well at home, I am not an idiot patient.


As usual because I take opiates – morphine slow release and oramorph, these have to be stored separately in the wards controlled drugs cupboard. Again I understand its for safety and its the rules but its highly irritating when you are allowed to administer these at home unsupervised. It also meant throughout my stay that my pain wasn’t well controlled as my slow release morphine tablets were given to me 2 hours late on the first day and then an hour late the next and I had to continually battle with the nurses administering my oramorph to give me the correct dose.


I am allowed to take 5ml / 10mg of liquid morphine every four hours at home should I need to. I never have because at home I stay on top of my pain. I can go days without taking oramorph as long as I stay on top of my pain. Its my last resort medication, when every other pain relief option has been exhausted. When I take it I take the prescribed 5ml / 10mg dose. It was written in my notes that this was the dose I should receive yet for some reason every nurse that I administered the oramorph when I asked for it decided to half the dose. When I asked why they wouldn’t give me the full dose I was told “you can wait an hour and see if you need the other half”. Like every patient, I know my body, I know that a half dose won’t cut the mustard, especially if my other pain medications haven’t been given to me on time.


In a lot of pain at 8pm the first evening I ended up losing my temper with the nurse on duty. It wasn’t her fault she had only just started her shift, she sat with me and explained that nurses always try and administer the lowest dose of oramorph first. I understand that’s their approach but nowhere in my notes did it say reduce my medication by half, they didn’t give me half my contraceptive pill, or one paracetamol instead of two, or one slow release morphine tablet instead of two so why ration the oramorph – it was being administered from the bottle I brought in so it wasn’t costing them anything! 


Being in pain when there is no reason to be is a horrible situation to be in. I spent my entire hospital stay chasing the pain trying to get on top of it. For the 24 hours in their care the pain was horrendous and it took me 48 hours once I was home to get back on top of it. It was a situation that didn’t need to happen and clearly none of those administering my medications appreciated the level of pain I was in.

 

My pain is triggered by hospital beds, I either get a memory foam “style” mattress which means my joints have pressure applied on them that they don’t usually have or a mattress that is too soft. I know many people with EDS find memory foam mattresses a real help, I like to be different. I have a memory foam topper but underneath my mattress is hard because my body finds it so hard to support itself when I am asleep.


I clearly wasn’t her favourite patient ( she was also the nurse that I told I wouldn’t be having a bedsore check) which was made abundantly clear when she told me the lady that had been in the bed before me had the same illness as me but was much worse and had been sick 10 years. I felt like telling her “Its not a bloody competition” I kept my mouth shut as I was still waiting for my slow release morphine!

 

I think the situation was difficult for both nurses and I because they were used to compliant elderly patients who didn’t speak up for themselves. This was more than evident when I had to complain about the mess the shared toilet was in when I went to use it. The patient two rooms up from me was having explosive diarrhoea and wasn’t always making it to the toilet bowl. Despite me informing the nurses of the toilet situation and the fact I was desperate for a wee, 20 minutes later the toilet was still a no go area. I couldn’t wait any longer and I knew I would be waiting longer still if I asked for a commode. I tiptoed through the path of destruction found some toilet cleaning wipes and cleared up the other persons mess so that I could use the toilet. I shouldn’t have had to do this and it made me angry. The staff were well aware of my limited mobility and the fact I couldn’t go clean toilet hunting.

 

I chatted to the matron of the ward the following day after leaving less than positive feedback on the card the ward administrator had given me. I was told that the nurse looking after me had point blank refused to clean the toilet feeling it wasn’t in her job role. By the time the matron inspected the toilet she couldn’t see an issue, I set her straight and told her there was no issue because I had cleaned it up. Something as a patient I shouldn’t have had to do.

 

Having been a manager of people, which essentially this matron was I found it startling that her request for my nurse to clean up the mess was ignored. Perhaps this is where the problem lay in the ward that those working for the matron ignored her and essentially there was no management actually taking place in the working environment. I want to say again the matron struck me as a lovely hardworking person but her time was being used doing the jobs those working for her were refusing carry out. In a previous life when I worked staff (including managers) could be disciplined for failing to carry out a reasonable request, I would suggest that clearing up bodily fluids is reasonable set in the context of nursing and if you don’t like it perhaps nursing isn’t for you?

 

I realise I haven’t touched upon the point of my admission, the octreotide trial and that’s because that was beset with disasters also. I am saving that for part two.



Socialising and chronic illness

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When you are chronically sick socialising can take a back seat. Either because you are too sick to visit friends or too ill to have them visit. Social networking sites can be a great way to catch up with people but it will never replace the joy that is felt when mixing with real people.

 

For those of you who follow my antics on my “The Myasthenia kid” page on facebook between blog posts you will be well aware that I am currently getting over some serious socialising. Last Saturday night (7th June 2014) my husband and I held a house party. Nothing too raucous, just 9 friends over for a bbq and some booze. We had planned this party for a couple of months and called it our “40 1/2 birthday party” as a bit of a laugh.

 

My husband managed to get the day of the party off work and basically did all the cleaning and prep work for the party to ensure that I rested as much as possible during the day so that I could enjoy myself during the evening.

 

The insomnia gods were not on my side last week, two nights were spent without sleep one of them being the night before the party. Due to the bad storm in the early hours of Saturday morning, even without the insomnia I wouldn’t have slept as my three hounds are absolutely terrified of thunder and lightening.I did try to get some sleep once the storm had passed but it wasn’t to be, I managed to go 24 hours without sleep.

 

How I got through the party I will never know. If it had involved leaving the house at all, I would have in all honesty cancelled. Not only had I gone without sleep but over the last week my bowel adhesions have started to kick off and on Saturday my stomach started to bloat with gastroparesis. It doesn’t make for a glamourous look and by 1030pm I had changed into my yoga pants, snuggle top and a pair of slippers. I know how to rock the party look.

 

My guests were brilliant, they may not know or understand what is wrong with me – I display no outward signs, like many others with an invisible illness but they all pitched in getting their own drinks, tidying up their plates and rubbish and telling me off when they felt I was doing too much. Thats the kind of guest I like at my party ones who help and don’t sit back expecting to be waited on hand and foot, purely because these days I just cant do that. No one said a word when I changed into my casual gear after looking so glam, all they want is for me to enjoy myself and relax in their company. Friends like that don’t come into your life too often! 

 

What my friends won’t see is the length of time it will take me to recover from the party. It could take weeks or even months such is the severity of the arse kicking my body will give me for enjoying myself. Much of yesterday was spent asleep. Today so far has been spent lying on the sofa. Luckily hubby has a late start today and hes done all the household jobs he could fit in before he left for work. I am thankful for his late start today even if it means he wont get home until after 10pm because it means I can lie in bed all day and not feel guilty for not spending time with him. The guilt I feel is enormous when I spend time away from him, in bed when he is home.

 

In preparation for the party I ensured Mondays blog post had been completed the week before. I naively thought I would be ok after the party (I never seem to learn) to write Thursdays post ( today’s post) during the week. I feel so awful I have scrambled together this post to ensure something is published whilst I recover!

 

Every part of my body hurts and on Saturday night it was no different such is the consummate professionals performance. I quietly topped up my painkillers on a trip to the loo, I injected my octreotide without drama, my only concern being I was wearing a white top and if it bled ( as it sometimes does) I may have to explain the stain. The only sign that I was flagging was getting changed out of my party gear and the wedge shoes that I swear were crafted by the devil himself. Even sitting down those shoes were killing my feet! I am a fashion victim and theres not a woman in the world who hasn’t endured pain to look good!

 

At least I have my shellac nails to remind me of what a good time I had. On the morning of the party I treated myself to a manicure and pedicure, partly because I wanted to look nice and partly as a way to stop me using up too much energy panicking that the house was tidy for the party. It did take up a lot of energy and by the time my toenails had been painted my legs were shaking with fatigue caused by holding them in the same position. Its silly things like this that remind you how sick you really are no matter how many times you try to convince yourself and the outside world that you aren’t.

 

I love socialising and seeing friends, my body doesn’t and that’s the choice I make. To put up with my body wreaking its revenge on me for trying to be “normal” for once. Sometimes it feels like too higher price but I will never give up.

 Frankie feeling a bit like me after the party!

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A quick update : Tuesday 10th June, I have now developed cellulitis in my right hand, first finger so I am back on antibiotics. Having spoken to the dr she thinks my immune system is very low at the moment and hence why I am struggling to get rid of the cellulitis. I am back on antibiotics and now have a skin lotion that is antibacterial to apply three times a day. If I am honest I am feeling a bit sorry for myself!

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“well if you’re that f**king disabled get off facebook and take up knitting”.

The title of my post will become clear as you read it. I apologise in advance for the language but I feel it has to be repeated here. The abuse that was hurled at me on facebook needs to be set in context so I apologise profusely for the preamble.

 

I have recently experienced some firsts the likes of which as a disabled person I had never experienced until a Sunday in May (2014). I have lived in fear of this kind of abuse for quite sometime now. Of course I have heard the horror stories about various forms of abuse the disabled encounter either on line or out in public but so far in my life I had been pretty well sheltered from it.


As a disabled person (7 years of professional experience under my belt) I know that many of the disabled community live in a constant state of fear when out in public or on line. Some have developed social phobias or agoraphobia such is the state of fear for them when outside the relative safety of their home.

 

 Since the coalition government took power in 2010 our lives  (the disabled) have got worse. It seems to be open season on the disabled in this country and this is being fuelled by the right wing media. It seems the disabled are nothing more than the whipping boy for this complete shower of …….(you fill in the blank) that are currently in power. The disabled are seen as scroungers, who fake their illness and take your money (the taxpayer) because they are too bone idle to work. 

 

Let me point out I would love to work, to get out of the house and socialise like a normal human being, its just I am yet to find a profession where I can carry out my job role lying down (there is one but I’m loath to get into the sex trade!).


The fact that these “scrounging scum” may have actually paid into the system during their working lives seems neither here nor there as far as the right wing press / political parties are concerned and the vitriolic bile they spew. If you are taking money from the state you’re a scrounger. 

 

What the general public, who are being brainwashed by this message seem to forget is that the majority of people in this country would be classed as scroungers under this political mantra – Child Benefit, Child Tax Credits, Housing Benefit, Council Tax Benefit, DLA, PIP, ESA, the State Pension, these are all benefits being claimed by the same people who lap up the benefit fraudster stories in what passes for news these days. Yet all these people claiming these benefits seem to think their benefit claim doesn’t count. It drives me mad that they can not see the wood for the trees.

 

And may god help you if you happen to be an immigrant and claiming benefit. The fact you may have had to leave your country due to a threat of bodily violence against you for being gay, speaking out against a corrupt regime or just being a woman, doesn’t seem to matter to these people either.


I have been extremely lucky in the last seven years to not have my disability mocked or its extent disbelieved, on this particular Sunday in May that all changed. 

 

As usual I had asked a question of my friends on my personal facebook page not my The Myasthenia Kid page. The question was about some Morris Dancers that had performed in the town centre. I asked if it had made anyone else feel uncomfortable that they had performed with their faces blacked up. I will state here I am white, I wasn’t trying to be all politically correct and Guardianista. I was asking a genuine question and I wanted to see how my friends felt about it. The discussion was a grown up adult debate that involved me researching on line during it to see what was the reason behind the Morris dancers being blacked up.


The question had been posted on late Saturday night, around 10pm and all involved had been very calm and everyone was respecting each others opinions. My view was in the minority which it occasionally is. Our town isn’t very ethnically diverse so it was interesting to see if the answers corresponded to that. I imagine if I lived elsewhere in the country the answers would have been different. It was interesting and enjoyable, I love a good debate. I don’t post these questions to be controversial and the people that are my friends know that I will ensure everyone remains polite and calm whilst discussing a subject.

 

I have posted numerous questions before to be debated however I will admit this probably was the edgiest yet. I have always tried to stay away from “controversial” issues when I ask a question, sticking to softer subjects like the length of school holidays or school cookery lessons etc.


Sunday morning was a different kettle of fish, a person that I am friends with for professional reasons (as in I have hired her on one occasion to do some work for me) decided to wade in both guns blazing. Her attitude was aggressive and she was determined to bully me into submission because my opinion differed from hers. She rattled off numerous posts, to which it became crystal clear she had neglected to read any of the comments contained within the debate. I kept pointing out to her what she was saying was factually incorrect and if she had read what had gone on the previous night she would realise what an arse she was making of herself. Obviously in my replies I wrapped it up a bit and wasn’t quite so blunt. However once this keyboard warrior was set in motion there was no stopping her and she became more and more abusive and racist.

 

Anyone who knows me personally outside cyberspace, knows I will not apologise for feeling a certain way or holding a certain opinion. I asked her politely to stop being so aggressive and to stop reducing what had been a good debate into a playground slanging match but she continued. When it became clear to her that I wouldn’t back down she posted 


   “well if you’re that fucking disabled get off facebook and take up knitting”.


I was so stunned by her comment initially I didn’t know what to do. No one in the last 7 years has ever said anything so derogatory about my disability. I was in the midst of getting ready to out with my parents when she wrote that comment. I don’t know what shocked me more the comment or the fact she is the mother of a disabled child or the fact that her child has mixed heritage.

 

When discussing it later with some of my “friends” they didn’t think the comment was that bad and were confused by my reaction to it. I then asked them if it had been a racial slur would it still have been OK? The answer was a resounding no. So then I asked is it acceptable to make fun of disabled people or call them names like spastic, mongol etc? Again the answer was no. I then asked “do you now see why this was unacceptable to me?” I got a yes but I shouldn’t have had to jump through hoops to get them to understand. 

 

If someone says something like “well if you’re that f**king disabled get off facebook and take up knitting” firstly it makes me feel that she is questioning the level of my disability and secondly because I am disabled I am not “allowed” to be on facebook because thats for “normal” people. Which then in turn leads to the old fashioned belief that if you are physically impaired in any way you are also mentally impaired. This kind of thinking left a whole generation of bright physically impaired young people languishing in special schools which believed they would never progress beyond basket weaving. 

 

Thats why that sentence was so offensive to me and it should be to anyone who is disabled. I have a voice and I will use it. I will not be bullied or shamed into leaving something or somewhere because I don’t fit into this trolls version of a “normal” person.

 

I like to credit my friends with some intelligence, their political views may differ wildly from my own but life is made up of so many different beliefs it would be ridiculous not to have friends that thought in a different way from you. What makes me sad is that they have bought into the propaganda being spewed out by this government. Where it is becoming socially acceptable to abuse disabled people. The police in this county have reported for the first time a rise in hate crime against the disabled. We have reached a tipping point and nobody but those affected by it seem to have noticed.


I know many of you have faced far worse abuse but this was the first time it had happened to me. Looking at it now I can see yes it was abusive but on the scale of things that have been said to others its pretty insignificant. At the time it didn’t feel insignificant, it wounded me deeply, that someone that I “knew” could say those things to me and harboured those deep seated feelings against the disabled.


Deeply upsetting as her ignorant comment was I decided it wasn’t going to ruin my day out. I felt at the time (and I still feel) that the best course of action was to delete the Troll and her comments. I have heard from other writer friends that Trolls are best dealt with by ignoring them or neutralising them. I couldn’t leave my facebook page open all day for her to post her hateful messages that were not just against the disabled but were racist as well, when I would not be able to respond to them for hours.


So leaving the upset at home, I ventured out to a local supermarket, my first trip out of the house since before Christmas if you exclude hospital / doctor appointments. I was very nervous whilst I was out of the house as where I live is a small town and it was possible that the Troll could be shopping there as well. Thankfully there was no sign of her.


Whilst at the till, my mother had parked me up whilst she unloaded the trolley. I was sat there minding my own business, when I saw a woman making a beeline for me. I had my sunglasses on so I had a really good look at her as she approached me in case she was someone I really should recognise. She came closer and closer towards me and without a word put her hand on my arm rest and leaned right over me to pick something off a shelf. I sat there in stunned silence, my presence had been completely ignored by this woman and I had been reduced to just a fixture or fitting. Had I not had the run in with the Troll that morning I would have grabbed her arm and told her “excuse me!” however as I was feeling so vulnerable I didn’t.


I couldn’t believe that this had happened to me that the simple act of me being in a wheelchair had reduced me to the position of non human. I thought afterwards maybe this woman was equally as rude to the able bodied people around her. I will never know but to be reduced to nothing more than an extension of a shelf in the supermarket knocked the wind out of my sails. Especially when I was looking so gorgeous, having made a real effort to be glamorous for my trip out of the house. ( sarcasm alert – if you missed it!).


My sister has told me many stories of people climbing over her to get into lifts / toilets before her. How in pubs she has been called a “spastic” or worse. Its never happened to me, I’ve been very lucky. My exposure to the outside world is limited, a lot of my life is lead in cyberspace. I thought I had surrounded myself with “nice”, decent people, who accepted me for who I am. I was wrong and that hurts too. Having met the Troll twice she seemed nice enough. However you never really know what’s lurking underneath with some people until you get into an argument with them and then all their subconscious thoughts come flooding out.

 

 

I guess under this government and IDS its just going to get worse and I better get my big girl pants on ready to do battle. I certainly won’t be taking up knitting!