Eventful

On Thursday 1st December I had my 6th Caffeine infusion. To say it was eventful would be an understatement. What has previously gone ahead pretty smoothly other than being unable to cannulate me without multiple attempts was littered with potentially dangerous errors. I am still in shock to be honest.

Over the few days leading up to the infusion my head was letting me know it was long overdue. By the time Thursday came around my head pain (from a csf leak) was reaching a 7 out of 10 on the pain scale within seconds of getting upright. By the time I reached the ward I was dry heaving, which happens when the pain gets to a certain level. I had felt sick before leaving the house and had taken my anti-sickness medication hours earlier but they had done nothing. All I was relying on to prevent me from blowing chunks were deep breaths and they were becoming ineffective.

On arriving at the unit I advised them of the fact I wanted to be sick, several times. My request for anti sickness medications went unanswered so I demanded a bowl as I didn’t want to puke all over myself when I didn’t have a change of clothes with me. In every other hospital situation I have been in when I have told staff I needed to be sick they have sprung into action. Here I was asked by one member of staff if I had a hangover, I don’t drink, well it’s easier to say I rarely drink. I had drunk two bottles of Budweiser the night before as my head was bad and it was a last resort but it wasn’t enough to give me a hangover. I calmly explained to the member of staff, the same member of staff I have been seeing since June (every month) that when my head is bad I will be sick. He knows who I am as he then asked me how my birthday had gone and laughed about the fact Mr Morris had booked me a dentist appointment on my birthday. So he could remember that but not the issue that I come in and see them for every month.

This time it was on my notes that I had to have an ECG, whilst wiring me up I was given a sick bowl. The battery was out on the machine so the nurse had to get a new one. Whilst she was gone I dry heaved into the bowl, bringing up no more than a couple of teaspoons worth of saliva. The dry heaving was automatic, I had no control over it, yet when the nurse came back she demanded I lie still so that she could do the ECG. Believe me it gets worse. Anyone with a modicum of common sense would have sorted out anti-sickness medication so that I didn’t want to dry heave during the ECG but no she was getting the ECG done and I wasn’t to interrupt with anything so petty as throwing up.

Finally after what seemed like an eternity I was presented with two tablets in a paper cup. I looked at them and I don’t know what happened but I asked the nurse what it was. A lot of the time I wouldn’t do this, many patients don’t and just assume what they are being given is correct. So let this be a lesson to you, accept no medication without asking what it is. Nurses / doctors are only human and make mistakes. The nurse told me it was ondansetron, a medication that I have suffered a hideous allergic reaction to when given via IV in 2014. Now this nurse (same one as the ECG nurse) had just put my red wrist band on, the one that alerts staff to the fact the patient has allergies so they must check their notes before issuing medication.

I carry with me at all times a mini medical file which contains the latest letters from my consultants, my prescription list (I can print off from the doctor's surgery) and a list of my drug allergies as I have quite a few. Every time I arrive at this unit they ask if I have allergies, I give them the list, they scan it and the same receptionist tells me every time that I won’t need to bring it with me next time. On Thursday she just asked if I had allergies and printed off a red wrist band. I assumed that the allergy list was in my notes. After I pointed out I couldn’t be given ondansetron she checked my notes and surprise, surprise my allergy list wasn’t contained within the file. So my hospital buddy Sharon found it in my bag and gave it to her. Sharon was sat in shock that potentially this nurse had nearly just killed me. Sharon is a veteran of hospitals and said “I never ask what they are giving me, I just assume it’s right”. I told her over the months of me coming to the unit I had heard them give patients ondansetron as the anti-sickness medication of choice. It is probably the cheapest and I don’t blame them for that but not everyone can take them and before issuing a patient wearing a red wristband it might be an idea to check their allergies. If they don’t ask you demand to know what medication they are trying to give you. I don’t want to sound melodramatic but I might not be alive today if I hadn’t have asked the question on Thursday.

As I couldn’t take ondansetron, I was given cyclizine a medication I have taken numerous times before with no issue. In their wisdom they gave it to me in tablet form despite me telling them I wouldn’t keep it down. I had stopped drinking at this point despite my tongue sticking to the roof of my mouth as I was so dry. When I tell you that I am not going to be able to keep a medication down I am not pissing about or trying to be difficult. They ignored me, so I took the tablet and promptly threw it up much to the nursing staffs surprise.

I won’t lie I had come into hospital on Thursday fully expecting a fight with a nurse I shall refer to as Dick. Dick seems to have a problem with my wheelchair and will move it away from my bed and put it in the next room claiming it’s in the way. As my chair will cost £2,500 to replace I have an issue with it being left unattended. He even has a problem with my old wheelchair insisting it is folded up and moved away from the bed. He also won’t provide my hospital buddy with a chair let alone my husband so they always use my wheelchair.

Sharon had witnessed this nurse's behaviour during my last caffeine infusion. She knew from our conversations over the last month that I wasn’t going to accept this from him this time. To me it seemed to be disability discrimination, he also has a problem with the walking stick I bring to help me transfer from my wheelchair to the bed. I was fully ready to get PALs involved if he kicked off this time. Much to our disappointment  Dick wasn’t on the ward when Sharon moved me through into the unit so by the time he came back from his break, she was fully ensconced in it, at the foot of my bed using it as a chair. We were pissing ourselves as we could see he was seething that we had got it past him. This entertained us greatly whilst we were there and the junior doctor we spoke to who managed to cannulate me first time whilst I was waiting for the cyclizine to come. Although he didn’t say it in so many words he also thought Dick was being a dick about the wheelchair.

The room in which I receive the infusions is pretty small, it has six beds and then a desk by the door where the nurses and doctors do their admin work. I don’t know which doctor it was that had to do the prescription for IV cyclizine but he was kicking off that they hadn’t done it IV to begin with when I was telling them I wouldn’t keep the tablet form down. So someone in there does have some common sense. I also heard the same doctor getting excited about my ECG asking the nurses who was in with sinus tachycardia, the nurse dealing with me told him “she’s always like that and we aren’t treating her for that”. Poor lamb had only wanted to help and was asking the question as to why my heart was racing whilst I was lying down still during an ECG, now we will never know as PoTs is only supposed to occur with changes of posture, I hadn’t moved for ages at the time the ECG was done.

Finally after what seemed like forever I was given IV Cyclizine. Within a few seconds of the injection being finished I really didn’t feel very well. I must've turned a funny colour too as Sharon told me I wasn’t looking very well. I suddenly felt very panicky and was worried that the nurse had just given me Iv Ondansetron. I just about managed to tell Sharon that my chest was tight and I felt woozy. Within seconds I was battling to remain conscious, my eyes were rolling in their sockets, unfortunately no one could see this as I had my large very dark glasses on as I become very light-sensitive when my head pain is bad. I felt myself falling as I slumped to the right hand side of the chair. For the briefest of moments I blacked out only coming around as Sharon was screaming my name and shaking my leg trying to rouse me. I couldn’t respond as I was still fighting to stay awake, I couldn’t focus on anything as my eyes just kept wanting to disappear into the back of my head.

Eventually the nurse realised something was wrong and whacked the bed back so that I was flat and then took my blood pressure. By the time she got her reading 109/73 I was feeling more or less with it again. She was trying to excuse herself for not noticing the fact I had passed out by telling Sharon and I it was because I was wearing makeup and sunglasses. I think the biggest clue was I wasn’t responding to Sharon and had slumped to one side. She did tell us that Cyclizine can crash your blood pressure which was obviously what it had just done. What she failed to tell me was that it would repeatedly crash my blood pressure for the remainder of my time in the unit. You’d think that she would have monitored me regularly after that episode but she only took my vitals once more and that was just before I left, nearly three hours after the faint.

I have faced some scary times when in hospital but that has to be one of the most frightening because I was shit scared the nurse had killed me by giving me IV Ondansetron and who can blame me with her laissez-faire attitude towards protocol.

I spent the rest of the infusion time trying very hard not to faint. Throughout the infusion despite the extra fluids going in, I kept feeling like I was going to pass out. I kept feeling like I was having an out-of-body experience. I knew if I fainted again there was a high probability of me not being allowed home, so I drank loads and kept being completely upright to an absolute minimum.

I only let Sharon know how bad I was feeling so that she could place herself in front of me should I try to face plant.

Despite how awful I felt I did have a good time during the infusion, it’s always great to catch up with Sharon, we always have something to say. Plus I got to catch up with a doctor who I thought I had lost forever to the acute stroke ward. He knew I had been to Bath the week before (it wasn’t a great appointment and all they will do for me is write a strongly worded letter to tell the hospital to get on with the blood patch as there is no increased medical risk) and we talked about the clinical trial that he wants me to be a part of. Its called a Sphenopalatine ganglion Block, it's basically a small catheter type device placed up your nose, which they then use to squirt a dose of local anesthetic up. It works on a group of nerves at the back of the nose and has good results in conditions like chronic migraines, trigeminal neuralgia and facial pain. This doctor and my neurologist want to trial it to see if it is effective for pain caused by a CSF Leak and I am more than happy to give it a go if it has a chance of stopping my pain completely.

I let this doctor know that last month’s occipital neuralgia nerve block injections had been ineffective. I told him although the nurse that does them maybe highly qualified she doesn’t do it the same way he does, which is multiple small injections along the occipital nerve. He agreed due to the fact the last lot hadn’t worked he would repeat them for me, if he came back from his meeting before I left the unit. Thankfully I was still there on his return and the injections he gave me have worked beautifully.

I have very little memory of the rest of Thursday, Friday and most of Saturday as my blood pressure wouldn’t settle and kept crashing after the cyclizine injection. I have had to piece the events together from Sharon and my husband. I don’t think I have ever been made so sick from a trip to hospital.

Due to the incident with the nurse ignoring my red wrist band and attempting to give me a medication I am allergic to, I have had to report the incident to the hospital. I have wrestled my conscience and I wouldn’t be able to live with myself if another patient ended up being given the wrong medication due to protocols not being adhered to. It could make things very difficult for me in the unit but I couldn’t live with the thought that  by not making a complaint it contributed to someone else coming to harm.

So last week’s Caffeine infusion was eventful to say the least.

Abuse

Last week I finished the post by telling you all how excited I was that I was going to get out of the house for the first time in months. We did get out and on the whole is was a nice trip out but there were a few incidents that occurred whilst I was out of the house that shocked and upset me.

Over the last 9 years I have been pretty lucky in the fact that no one has abused me in the street for my disability. My sister, friends and acquaintances have told me about their experiences at the hands of Joe public and some of it, well all of it has been truly shocking. Until yesterday I felt like I was in a protective bubble, maybe others saw me as I saw myself, a strong and confident woman. Yesterday made me realise that some people only see the disability or my wheelchair and everything after that doesn’t matter. They don’t care about your disability because as far as they are concerned you are a big fat fake. Yesterday’s events have shaken me to the core.

Hubby and I decided to take a trip to Exeter our nearest big city. In the past and I have to say if I am honest yesterday as well, we have always been impressed on how much people help us with simple things like opening doors or wrangling children that are determined to run in front of me. So I wasn’t concerned with being abused for being unfortunate enough to use a wheelchair. I had heard horror stories from others but they hadn’t taken place in Exeter. We had some gift vouchers to spend and there were a couple of shops we wanted to have a look around. It wasn’t anything special just some time together with the dogs being looked after by a friend.

The first hour of our trip was uneventful, I am not going to name any of the shops where incidents occurred because they have no control over the general public's behaviour.  As we approached a checkout in the first shop, there was a woman being served. We loaded our things onto the belt and waited to be served. Hubby turned to me and said “Do we need bags?” to which I replied “no I brought some with me”. As I spoke to him the woman customer stopped packing up her shopping and then looked me up and down. The look was of disgust, there was no smile or anything else for me to confuse her emotion with. She looked at me as if I had just taken a giant turd at the bottom of the conveyor belt. I brushed it off, this woman was the one with the problem not me. I don’t know what it was about me that disgusted her. It could have been the wheelchair or it could be that is how she looks at every stranger. I can’t say I was treated any differently because I was disabled but it made me uneasy. This had never happened to me before…..ever, pre disability or post. The woman left without saying a word and we got on with the business of packing and paying for our shopping.

We wandered around a few more shops and after an hour or so I needed the toilet. There is only one disabled toilet (that we know about) that isn’t confined to either genders, which means that Jay can come in with me or help me get into the bathroom. When the disabled toilets are part of a female block I can’t use them as I can’t maneuver my wheelchair adequately enough in tight spaces. Once in I wouldn’t be able to get back out again. Of course this toilet happens to be on the top floor of the store and the stairs are a no go, I’m not into extreme sports.

We patiently waited for the lift to arrive. When it did inside there was one heavily pregnant  woman the other woman had a pram. We made our way towards it and one of the women inside the lift turns to the other and says “Oh we’ve got the wrong floor” and shuts the doors on us. Again I can’t say that this was down to the wheelchair, I think it was mainly down to selfishness and ignorance. I am really annoyed now, so as the lift door was closing I shouted “cheers love!” in a sarcastic passive aggressive British way.

The next lift arrived swiftly and we hopped (well obviously I didn’t) aboard. We arrive at our floor and Jay pushes me towards the disabled toilets. Guess who we bump into ? Yep pram lady. She is blocking the access to the disabled toilet. She was much more helpful this time ( and also blushing) she told us the disabled toilet was in use but there was a family bathroom around the corner. Unfortunately that was engaged so we trundled back to the disabled toilet at the exact same moment her friend the heavily pregnant lady comes out.

I could have gone mad, shouted, sworn but I didn’t. You see she could have had a disability and be using the disabled bathroom for legitimate reasons. Who am I to judge? When I first got sick, I didn’t actually look sick, I was walking unaided etc. There was nothing that just by looking at me that would tell you I was disabled, obviously now the clue is the wheelchair but even then people still think that you are faking such is the hostility towards disabled people in this country. I was angry though because if she had been selfish enough towards me at the lifts then I really wouldn’t put it past her to use the disabled toilet when she didn’t have a disability.

I had been dismayed at the treatment I had received but I shrugged it off. People are selfish / weird sometimes and I wasn’t going to let it ruin our day out as they are so few and far between. We decided to leave the city centre and make our way over to a retail park on the outside of the city. We planned to browse at a couple of stores but our treatment in the first store meant our trip was cut short as I was too upset to continue.

We had heard a lot about this discount store and were looking forward to having a nosey around. Hopefully picking up a few household bits, nothing very exciting. We spent about 30 minutes in the store and it had been a successful shop. I had picked up a new curtain rail for my bedroom, plastic pint glasses for our summer party, dish brushes (which have become like gold dust for some reason), as you see nothing very exciting but I had got to pick them out and make decisions for a change. The checkouts weren’t very busy and when the customer in front of us had finished I manoeuvred  myself down to the end of the checkout so that I could pack our shopping.

I should have realised we were in for a rare treat when the cashier didn’t even acknowledge our presence. As an ex checkout manager I know that customers should be greeted. A simple “hello” is not too much to ask. We were met with stony silence so we just decided to let that slide, thinking maybe the cashier had, had a shitty morning. Jay stood in front of the cashier as he was holding the curtain rail so that she could scan it as it was too bulky to make her put on the belt. As he also has experience with checkouts he likes to makes things easy for the cashiers. He held it up for her to scan, which she did but there was no acknowledgement or thank you. Yeah you can tell she went to an expensive charm school!

As I said earlier in my previous life I was a checkout manager, customer service was very close to my heart. I also know quite a bit about a checkout design but I won’t bore you with the details apart from they are designed for both the operator’s and the customers ease of use in mind. So if a checkout is designed without a back belt, it is made so the cashier naturally places the items after they have been scanned towards you. To place them anywhere else on the belt uses extra movement and twisting which if done repetitively is bad for the operators back, costing the company a lot of money in repetitive strain injuries claims. So I am not your average customer who knows nothing about how these things work.

Our cashier obviously had a problem with me / my wheelchair / my disability as with each item she moved it further and further away from me. So that I was reaching over the metal lip (at the back of the checkout that stops your goods falling onto the floor) and right across the back of the checkout. As I was packing an item I looked up but not in a way that was obvious, to see the cashier lift an item that she had already placed on the back belt (it’s still called that even when there is no back belt) and move it further away from me again, smirking to herself as she did so. I was stunned, initially I just thought she was an ignorant sod and clearly lacking in the common sense department but now I had just witnessed her deliberately moving an item. I was stunned, shocked into silence. Jay paid the woman and then grabbed the item that I had been unable to reach. It wasn’t until we got to the car that we spoke.

Jay had also seen the cashier deliberately move the item. Initially he thought that maybe the item hadn’t scanned and she was going to try again. Then when he saw her move the item further away from me, he realised what she had been up to. He had hoped that I hadn’t seen her do this but by the time I got to the car I was already in tears. We were both fuming. We just couldn’t believe that someone could do that to another person.

I was too cross yesterday about what had gone on to talk about it much. I also didn’t want it to overtake the whole of our day and ruin it. This morning though I was angrier than ever. I found our receipt and I emailed the company with the cashiers operator number, checkout number and the time we went through the till. Obviously having a retail background really helps in this situation as I know more than the average shopper.

I also posted about it on my own Facebook page and understandably people were outraged that someone could be so vindictive and malicious. I have so far refused to name the store where this occurred as I want to give them 7 days to respond. If they don’t respond I will write to them, if there is no response after that I will turn to social media. I don’t want the operator sacked but I do want her disciplined and informed that this behaviour isn’t acceptable. I don’t care what she thinks about people with disabilities outside of work but she needs to realise that in work she is representing the company she works for. Her actions have consequences and If I am unhappy with the company's response I will not let it drop.

I thought that I was too old and wise to let myself be affected by this kind of childish behaviour but I have to say it really has knocked my confidence. I feel now that when I leave the house in future I will have a target on my back and will be abused again.

I am also angry that I didn’t say anything at the time but I just couldn’t believe that another person would think treating me that way was ok. I felt humiliated and degraded in a way that I have never been before. I have always been so sure of myself, my nickname at school was zippy as I was so gobby, people wished I had a zip on my mouth (like the character from the children’s TV show Rainbow). I hope that by making a complaint now rather than letting it go will prevent others being mistreated at this woman’s hands.

Disabled people have spending power and it would be foolish of any business to allow this kind of medieval attitude to disability prevail.

The Response to "Dear Norms"

My blog post Dear Norms (WordPress version here) produced a response on my blog, my The Myasthenia Kid page on Facebook, my own personal Facebook page and the comments section of both blog platforms that I could only dream about.

Although it was fantastic to receive such a response my heart was heavy reading other people's experiences of being abused by "Norms" due to their disability. I have been very lucky to have suffered very few incidences of abuse. One of which I wrote about - Well if you're that f**king disabled get off Facebook and take up knitting (WordPress version here). The abuse I received via social network when what had been a friendly discussion got out of control, upset me for days afterwards. I now know I had simply been trolled by someone who would not accept I had a different viewpoint from her. When she realised I couldn't be bullied into changing my opinion she launched her vicious tirade culminating in "well if you are that f**king disabled get off Facebook and take up knitting". 

It made my anxiety about leaving the house much worse. I do not suffer with agoraphobia but the open hostility with which the disabled are met on a daily basis, causes me anxiety if I need to leave the house for appointments etc. Due to my chronic conditions making me virtually housebound, leaving the house is a big deal. I know that it will have consequences for my health, normally a rapid deterioration. Add in the highly likely scenario of facing some sort of abuse and or discrimination, leaving the house can have self-esteem / confidence implications as well.

One response came from my sister Lucy ( who I am hoping will be a guest blogger in the next few weeks ). She also suffers from Ehlers Danlos Syndrome Hypermobility type and Dysautonomia along with other conditions she has picked up along the way. 

My sister has faced an enormous amount of hostility regarding her illness from day one. My sister was a medical conundrum back in the early 1990's at age 14. It was just at the time that Yuppie Flu so helpfully named by the media was coming into the fore. What the papers failed to realise or accept was that the so-called Yuppie Flu was in fact a real medical illness Myalgic Encephalomyelitis or M.E for short. 

My sister was accused of faking her illness, having school phobia and medical staff tried to blame my parents for her condition implying they were both suffering from Munchausen Syndrome By Proxy. Eventually the diagnosis was settled on she had M.E or Chronic Fatigue Syndrome, which it is also unhelpfully known as. M.E and Chronic Fatigue Syndrome has about as much in common as football and Ice Hockey but I digress as usual. She was diagnosed with Ehlers Danlos Syndrome and Dysautonomia shortly after I received my diagnosis in 2011.

My sister was so ill as a child (and still is) that she needed a wheelchair both indoors and out. For two years she was confined to her bed and suffered from epileptic like seizures. These were explained away by the medical profession as psychogenic seizures, the implication being that she was putting them on. It is believed to be some form of somatoform disorder / conversion disorder. (Isn't it funny how we have both been told that we have a psychogenic illness?) If that was the case she should have received an academy award. The medical profession may have decided she wasn't worth their time or effort but our family GP who worked tirelessly to try to help her. She did find as a young person in a wheelchair she was accepted on the whole by society. How things have changed.

On reading my post "Dear Norms" she was compelled to comment and this is what she said;

When we took my son to the out of hours doctors recently the first thing the doctor said was, "Is that your wheelchair?" I am so f**king sick of people in the medical profession asking me that question, especially when I am not even the bloody patient.

 That's like me asking an abled bodied person if that's their legs or a transplant donors! I feel like saying, " No. I'm just a huge fan of Little Britain and I carry car bumper stickers with me all the time so I can pimp up other folks wheelchairs." It's beyond stupid, yet I come under the category of "Disabled!!!" 

 I was so shocked by what Lucy said I couldn't come up with the words to explain the outrage I felt. On talking with her she told me it happens at every medical appointment she attends with a new doctor, whether she is the patient or her son/husband is. I am left scratching my head as to what the medical relevance is to the question "is that your wheelchair?" Especially when Lucy's five-year old son is the patient.

I regularly get the question "Can you walk?" when meeting doctors whilst using my wheelchair. I understand they want to gauge what my mobility levels are but it is a highly offensive question when again it's not medically relevant, such as when my bladder was in spasm and I was in acute urinary retention. The explanation from doctors would be that they are trying to assess what help I will need whilst in their care. The question is so loaded that I feel that every time I answer it I am being forced to justify my using a wheelchair.

For clarification I use my wheelchair for many reasons. The first is for safety I can be incredibly unsteady on my feet causing me to fall on numerous occasions daily. I can lose my balance stood still that's how bad my balance issues are. Another reason is that walking causes me intense pain due to the Ehlers Danlos syndrome, knees give way or dislocate, hips have a tendency to pop out more than I do and don't get me started on the mess that is my spine. My wheelchair is also used because of my Dysautonomia, my blood pressure can drop like a stone and when that happens I tend to as well. It happens without warning. Also being upright causes my heart to beat rapidly (130bpm) and this is exhausting. Yet my explanations are met with a wry sarcastic smile, it's as if my conditions are disbelieved. The wheelchair is obviously just for show, I am a lazy cow who doesn't like to walk anywhere. I mean wheelchair access is just so great nothing stops me......apart from stairs, escalators, badly designed kerbs etc.

Another person commented that her ex partner had used the word "spaz", "mong", "retard" as a term of abuse whilst they were in a relationship. Her children are also disabled so the ex wasn't just abusing her but her children also. This made her see red and she smacked him in the puss - her words not mine. I don't condone violence but when backed into a corner it can be a natural reaction.

A long time friend of mine whose comments you can see on my WordPress blog described being spat at and told to get out of his wheelchair and get a job. As he says the people who did this to him, don't know him from Adam and they fail to realise he has worked for 40 years. Unfortunately all people see is his mode of transport, a wheelchair. The chair has become in their eyes his identity and he is reduced to being a leech on society, sub-human. This man, this friend of mine who served his country, was injured in the line of duty. Is this really the way we are going to treat wounded ex-servicemen? It makes me so angry that intelligent human beings are being degraded in this way by people who consider themselves normal.

I don't believe that you can be what most people consider "normal" to treat another human being in this way. I am so angry but I have used up my profanity allowance for the day that I can not find the words to express how I feel. 

It seems "Dear Norms" stirred up a lot of feelings for many people. It exposed me to some truly shocking and horrific personal stories. I just wish the people I was addressing in that post would realise the horrific damage they are doing by using those words and holding those attitudes. As a society we will never evolve if the disabled are seen as a drain on the country's finances and not as human beings who have something to offer the world.

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For those of you who may have missed this I have been nominated for a WEGO Health Activist Best in Show blogging award! This is a huge deal. I need your help though. Please could you follow this link which will take you to my nominee page. All you have to do is hit the purple endorse button and leave your name and email address. Both your name and email address will stay hidden, so I won't know who you are or will anyone else. I need as many endorsements as possible to help my blog go through to the final stage.

This is a huge honour and the stuff of dreams for me. I have had this on my wish list for the last year or so and I am finding it very surreal that I have received a nomination. Thank you to everyone who has endorsed my blog so far You Are Awesome!

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. 

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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........