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.

Red wrist band

Red wrist band


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.


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.