Being in Wexham – Day Thirteen

Unlucky for some thirteen?

I think I finally dropped of to sleep at about 3:30am, however one of the ladies in my bay is very poorly and requires nebulising, this woke me at 5:30am as they do it early for her. Totally understandable and I was used to the early starts by now, I tried to doze for as long as possible and about an hour later the nurse was by my side ready to check me over. My BP was low, she was concerned but I assured her this was my normal, so please don’t worry. Next drugs and breakfast, yes I was still tolerating a small amount of solid food first thing even though I didn’t feel like it. The wave of pain and nausea hit soon after but I just rode that storm, I would have to if I wanted to leave.

I went and got washed and sorted, I wanted to look presentable when the Drs came round, not rough, so they felt I looked better. Then the waiting game began. My friend who works in the hospital popped in with some of my favorite chocolate, Ripples, thank you ❤️ and he chatted about me actually looking brighter and being able to sit up, which hadn’t been possible a week previously. I explained I did feel better than a week ago and certainly felt I was managing the pain better, it was obviously now just a case of the malnourishment, would they allow me home so skinny? Finally they were on the ward about 11am I was so nervous. My friend went back to work and as they finished the first bay of beds, they disappeared. My heart sank, where were they going? What about me?

Nearly an hour later they finally came back but with a different consultant, this was the gentleman who had come down to Ward 20 and made the decision to keep me in, firstly I asked if we could get Andrew on FaceTime as he was unable to be there, he agreed instantly. Then he came on camera and said hello. I explained to the doctor how I was feeling, how I was tolerating food to prevent the TPN process as I was unwilling at this stage to go through something so invasive and that I felt I would be better at this stage to complete the rest of my recovery at home.

I held my breath as he then said well if the MRI results come back clear, which we should know by 5pm, then you may go home. I could have cried. This was my chance to go home, it was a case of keeping everything crossed until 5pm. They left my bedside but I didn’t understand why it hadn’t been reported on since Friday, so I asked on of the trailing Drs who would I chase at 5pm. She said well after your scan the results will be added to the system, I told her I had already had it on Friday. So she went away and double checked, however never came back to me with an explanation.

Another friend turned up and sat with me for the rest of the day, as Andrew was so busy at work, it was a welcome distraction. By 4:30 I was getting restless, no news and Drs flitting, so I saw the lady Dr and asked her how close we were to getting the results, she broke the news to me. My MRI was so specialist that there was only one radiographer that can interpret the images, he wasn’t in today so the results wouldn’t be reported until tomorrow. I was crestfallen, she could tell, I asked instantly was it possible for me to go and get the results with my consultant? She said only her registrar could make that decision. The registrar was soon by my bed, we had a brief chat and he said considering I felt ok and bearing in mind I did have a consultant appointment within seven days he was satisfied to let me home. If I did want the results sooner I could call the ward and speak to the doctors. I was so happy, I just wanted to leave, go home to my family, my own bed and enjoy peace and quiet.

Within five minutes I was dressed and packing with the help of my friend. Andrew arrived soon after, the cannula was removed and I was able to go. My medicines will be dispensed the next day so my friend who works at Wexham will get them for me. Half an hour later we were leaving, I couldn’t believe it, after a two week stay I was going home, it’s the weirdest sensation when you haven’t been outside in two weeks, to suddenly breathe fresh air, see crowds of people and lots of cars and traffic.

We got home and the best medicine was seeing my pussy cats, the fuss I got. I had missed them so much. My fur babies mean the world to me!

We didn’t have a late night as Andrew is now ill, full of cold, so headed to bed and what a beautiful sensation, I climbed in, silence. It was warm, cosy and most of all I cuddled up to the man I loved, I fell asleep almost instantly reassured that I was home and safe.

We had a broken night poor Andrew really is not well, but I needed drinks through the night too, I’m used to being unsettled, but overall I got double the amount of sleep I would normally have got in hospital. That felt better!!

Being in Wexham – Day Twelve

Sunday, no lay in for hospitals, obs and drugs all done by 7am!! With next to zero sleep this meant I was absolutely shattered. I doubted I would hear from the outside world for hours but a little before 9am poor Andrew was awake. I told him not to rush and he took a steady morning, getting organized before heading into hospital.

The good news is they are no longer measuring my fluid output so I can freely come and go to the bathroom, that’s a nice feeling, no longer having to be monitored. I prepared all my things so I would be able to have a wash once Andrew bought my clean bits in and now it was just a waiting game.

I checked the notes on the end of the bed and realized they still weren’t noting my food correctly, so I requested additional food pages and completed them myself. If the nurses won’t do it at my request, I will ensure it is written up so there is no argument.

Finally Andrew arrived and before the football started he whisked me off to the bathroom to get a wash and change, as always a lovely feeling.

The rest of the day was spent just enjoying one another’s company, he has been an amazing support, I can’t fault him sitting here for hours on end, holding my hand, stroking my brow, just being with me!! If anyone deserves a medal its him, he’s worked at the shop, DJ’d at night, run the house and visited the hospital not easy to juggle on hardly any sleep.

I had a few additional visitors drop in whilst Andrew was there but by 7:30pm, it was time for everyone to go, I was too tired, so was Andrew, it made more sense for him to get home and we could message and FaceTime. I settled down to watch some TV for the evening and that passed a couple of hours. Finally it was time to say goodnight, a FaceTime for reassurance and that was it, my eyes were heavy I hoped I would sleep well.

I dropped off quite easily for an hour, then was woken suddenly at 12:30 by my neighbour shouting again, in fact it scared me. This carried on again into the small hours, I was so fed up I had hoped for a decent night 😔

Being in Wexham – Day Eleven

By 6am I needed to get up and use the bathroom, so asked to be disconnected from my drip. When they returned to connect my drip it was obs time too, I wasn’t going back to sleep so just got on with my writing.

They night staff handed over to the day staff again by the beds, I was horrified to learn they were talking about TPN feeding, which would probably mean staying in hospital as there are only two units in the UK that provide home support. This is something I need to clarify with the doctors today, IV access point or PICC line? Home or hospital? I was stressed out already and it wasn’t even 7:30am!

I made the decision there and then if I was to even try and get home I would have to try solid food and see how much it hurt and learn to work through the pain. They came round with the trolley and almost bypassed me, but we’re so shocked when I actually said could I have a very small bowl of rice crispies. I wasn’t hungry and I was shaking and scared to eat them but I had to try. I drew my side curtain so I couldn’t be seen and carefully took my first tiny spoonful, it felt odd to have solid food again. I chewed until it was completely mush and swallowed, ok not too bad, a couple more small spoons and then the nausea hit. I felt a sudden sadness and tears sprung at my eyes, I was trying hard and my body wouldn’t even let me do this! Well tough I was doing it, I carried on, a couple more spoons, then the waves of pain started by now I had made it through half my tiny portion. This in my eyes was an achievement so I left the rest and laid back to take it easy, waiting for the sickness and pain to subside a little.

DD gave me a call and I was distressed from the pain and the desire to still want to leave. It upset her to see her own mum in such a bad way, she was in London doing what young people do, have fun, and with me laying in a hospital bed she should do just that as life is just too damn short. You never know when something is going to get taken away. She wanted to whisk me away, to take me home or to another hospital which would help me more, or at least more efficiently. I told her it would ultimately be Dads decision as my carer so she would need to speak with him, so she said she would. We said goodbye and we would see each other soon.

Next Andrew got in touch he was awake and getting ready for his big and busy day. He would be with me by 11am and did I need anything bringing up, a getaway car? He did just as promised and arrived at 11am, and no Drs had been so I was pleased, hoping that at least he would be here to see them. We spoke to the staff and asked them to weigh me to see if there had been any change over the last three days on this ward. They came around and I got on the scales, lost another pound, now 7 stone 3 pounds. At least the weight loss had slowed, it wasn’t as rapid, maybe that was because they had me hooked up to fluids all day every day?

We then asked what time the Drs will be around, they said there would be none on Saturday or Sunday, as they had the weekend off. Alright for some I had asked for a weekend off from this place, shame that hadn’t materialized! I was so disappointed so even if TPN was approved it wouldn’t be started until Monday, so I needed nutrition now, I seriously needed to eat food a little at every mealtime.

I ordered some lunch and supper, I kept it gluten free, lactose free and soft. Andrew was so impressed that I was going to do my best, but the hospital had left me with no option. We chatted about what now, Andrew explained the most sensible thing was to stay until Monday, get the MRI initial findings and a follow up appointment, which we actually have with Dr Levi on 22nd December, then get them to let me home. We spoke to another patient who had also had a TPN pump and she said it hadn’t been worth it, she had gained only one pound, so for all the effort really do weigh up the pros and cons!

Lunch came and I gave it a go, thankfully with Andrew here as some moral support he could see how hard it was for me to manage food. At least I tried though, I ate a little again a weird sensation, it doesn’t taste great either at the moment too, but that could just the their food. Another good reason to get home, Andrews cooking is the best, he can make the most nourishing, tasty food that will ensure I get everything I need nutrition wise. I finished all I could and Andrew was pleased, he felt I had done well, I was proud with myself.

All too suddenly it was time for him to head back to work, his big gig for the night, I was meant to be going too, so this was doubly hard. There were tears, hugs and kisses, he knew how difficult it was going to be and he was gutted I couldn’t be there. Once he had gone I allowed myself a private weep, I was now alone for the rest of the day and evening, this was going to be hard.

Or so I thought, suddenly at the end of my bed was a fabulous friend and member of the F1 family and her husband. They were en route from Essex to see friends and insisted on coming! I burst into tears, which caused her to burst into tears. There were hugs all round it was such a lovely surprise and this is why I love my F1 family so much, they all go out of their way for one another. They stayed as long as they could and by the end had me smiling, a rare sight, it had been a fab visit.

Now they had gone it really was time alone, I was listening to music for the first time since I had got here which helped keep my spirits a little more buoyant. Maybe it was also knowing that there was light at the end of the tunnel?

By 5pm I decided to start watching TV, first some Motorsport, then the usual crap Saturday night TV followed. Throughout this Andrew tried to stay in touch via text, he kept apologizing for me not being there, for not texting enough, it made me upset that he felt bad. That’s when I got angry with EDS, PoTs and the whole chronic illness thing, it’s the first time I’ve felt really angry. Two years ago I had everything and now I was laying here, over the last twelve days I had missed so many events, in fact in the last twelve months we have missed so much for one reason or another. This was just the last straw this hospitalisation!

I decided to try and settle down about 11pm so said goodnight to him, he reassured me “not long now”. I laid down however sleep wouldn’t come, then the lady in the bed opposite “kicked off” again, the poor night staff. The language and abuse they have to tolerate, it makes me want to scream! By 2am I was still hoping for sleep but she was still shouting out for her son and for everyone to “Get out of her home”. I messaged Andrew he had just got home and was shocked to find me awake, told me off and told me to go to sleep. I explained and I think he was again disappointed that another night was so badly broken. He signed off at 2:30am exhausted and needing his sleep, this last fortnight has been such a drain physically and emotionally on him.

However I didn’t get to sleep, the noise continued on the ward even with my headphones in I could hear it, it was that loud and sudden the noise canceling didn’t have a chance to catch the sound. I think I finally dropped off about 4ish I was throwing myself around for ages, even the sleep I got was very fitful though……..

Being in Wexham – Day Ten

Once again as I dozed off in they of course woke me for my obs, this was getting a bit boring now, keeping being disturbed when you finally fall asleep. It’s like some kind of torture process, sleep deprivation. I again gave up and turned to social media to entertain me, Andrew was awake early and messaging he planned on being at work early and available to come to the hospital for ward rounds.

A doctor came onto the wards, not mine, and was discussing referrals, she explained that it was Friday and if nothing happened today then it would be Monday at the earliest for her patient. It struck me that’s how it works here slow, or super slow, I was bereft, I started crying realizing another weekend locked away here was on the cards. I couldn’t calm down. The nurse in charge found me tried to calm me and said lets see what the doctors say, they are on the male side they shouldn’t be too long.

I text Andrew straight away to give him warning and he headed in, he was soon by my bed and giving me a hug, cue more tears. I told him I couldn’t cope anymore I had come in sick, I was now worse and most of that was due to the hospital leaving me on the wrong ward for eight days. He of course understood and said well if the MRI isn’t planned for today, they better get it planned for today. Enough was enough.

I wanted a shower and hair wash, but we waited and we waited, finally the minute I get in the shower as the nurse didn’t think they would be on the ward for a while, they came to the shower room and told us they had arrived on the ward. Well they would just have to wait for me! Another friend came to visit and we warned her the Drs were coming and it might not be pleasant.

The doctors crowded round my bed and I don’t know how but all hell broke loose, the main man felt that the MRI was not going to show anything? But didn’t actually give any form of explanation or suggestion of what it might be. By now I was distressed, thank god my friend was here holding my hand, Andrew was trying to explain that they needed to contact Prof Aziz in London who is an expert in all things Gastointestinal and Ehlers-Danlos. I explained my frustrations with the hospital the eight day delay to get to the correct ward, the assurances that the gastro team had been made aware of my presence, the promises of ultrasound , pain management team and then a colonoscopy via GA to be booked as an urgent case, which was attempted to be booked as a Gastroscopy under GA. I tried to explain I had lost faith and trust in the hospital and he said if you want to go home then that’s your choice. No our choice is to get the best treatment available via the NHS, that it is right first time, every time. He suggested we all calm down, as it was getting us nowhere. I tried to explain why I was so upset that from the day of my arrival I had been dumped on the wrong ward, I had been told day after day that various things would be done and nothing had happened, even to the point of Monday seeing the Gastro Consultant he had said a move to ward two and an MRI, the move taking two days and so far the MRI taking five days, neither acceptable in my view, by now I was near hysterical. He kept just dismissing us saying if I wanted to go home, I was saying I want to go home because I’m depressed, through lack of action, lack of sleep and sheer damn incompetence. The thing is when the doctors do their rounds there are a few of them, one of them working at a computer that they take from bed to bed, three that trail around like puppies, a nurse and the big cheese. I don’t know who did what but the next thing there was a porter to collect me to take me for my MRI, I think we had made our feelings clear. It happens today or PALS would be finding out. I was whisked out and didn’t even get to finish the consultation with the doctors so left that to Andrew. He insisted they took Prof Aziz’ details and make contact with him, what did they have to lose? They knew nothing about EDS yet their patient was a sufferer of the condition, get the help. Apparently they also discussed a weekend pass, but something was mentioned about gastro beds being so in demand, so would they be able to hold mine?

I went to the MRI I sat in the waiting area for ages then the radiographer came out with a jug full of liquid and asked me to drink it all!! Bearing in mind I’ve been sipping for weeks this was going to be tough. I started with cup one, I had 45 minutes to do this in, it went down but it tasted not too pleasant. The intention was for it to coat the lining of the small intestine. Half hour in and I was nauseous and cramping, two of the warning signs he had given me, so I stopped. By now I was ready again they took me through and laid me down, they I got hot, then ran cold. This was awful! Another thirty minutes passed until it was my turn and finally I was in the machine, laying face down, with my shoulder above my head, I was so uncomfortable. Be brave this couldn’t last too long, I lay there thinking I was sunbathing I Florida a trick someone suggested in conversation the other day, it nearly helped until I wanted to throw up! Finally it was over and I was to be taken back, it was gone 3pm, I knew Andrew had planned to leave at 2pm so I would have missed him.

Imagine my joy to find him sitting on my bed, that’s why I love him, he waits for me, he won’t leave me! He had worked out to the very last minute the time he would have to leave until his dreaded disco that evening. We squeezed in a catch up on what had been said when I had gone, then sadly it was that time, but the good news was the MRI was complete.

We also found my hospital notes laying on the bed, now Freedom of Information Act states that I can read my notes, as can my next of kin, so Andrew was looking at them and had been for five minutes, when a nursing assistant challenged him. I then took them off him and said well I would like to read my notes I’m allowed they are my notes I know I’m allowed I read them on ward 20, she said no your not and took them away from me, I was flabbergasted. This hospital need to learn the law because the nursing assistants don’t have any right to behave in that manner. My other friend who works in the hospital witnessed most of this and said not to worry she is applying for these notes, I will go and get you the form now! Within five minutes I had the form by my bed.

No sooner had Andrew left than the dietician came back again, she asked how things were and I said about the same I explained about the state of the hospital food, so Andrew was bringing in food from home. I was trying to eat but it hurt, I was doing my best. I knew I was depressed but that was circumstantial rather than clinical, I told her I just needed to be at home with my loved ones, getting rest in my own bed. She explained that her recommendation now was for IV nutrition but this would have to be agreed by the doctors, she would put it in my notes. Once again this conversation was through floods of tears, I just couldn’t keep it together today.

I laid back and rested with my friend for the rest of the day she could stay until 7:30pm, we discussed what should happen and what I should do if it doesn’t. We made some notes of what the doctors had said in case we need to make this all formal, a little further down the line. The night staff came on just before she left and the nurse in charge came over and explained that she would need to change my cannula and hang more fluids as I had “refused” earlier. Now my friend had been their all day and I had not refused at all, I hadn’t even been told I had been prescribed more. At 7am when they ran out they couldn’t reattach me as there were none written up, after I got back from MRI nobody asked me about hanging fluids, let alone gave me the chance to refuse. I was back in tears again more lies, do they think I’m as stupid and senile as some of the patients on this ward?

My friend had to go but I had calmed down enough to assure her I would be ok. The nurse came back to do my cannula and sadly that got too much for me again, another wave of emotion flooded over me, I told her I just needed to go home. I would get better nourishment at home, better rest and better support from my family. I was getting sicker and more depressed day by day it was getting ridiculous. She said we need to find out what’s wrong, I said well the Dr doesn’t think anything is going to show on the MRI so then what? She said well the dietician has suggested IV nutrition but we need to get the doctor to approve, would they? It took a while for me to calm this time, I knew I was stuck for another night, I was devastated. She started with the cannula, a new one was placed in my right fore arm which seemed better than the one in my hand. Finally the blown one in my hand was taken out (I forgot to mention it blew when they put the contrast in for the MRI). She suggested Andrew come up when he finished work which would have been possible but he had things to do at the shop, because he had got caught here earlier in the day. So we decided to speak on the phone and then FaceTime at bedtime.

That was hard as well saying goodnight when all you want to do is curl up together, he placed his iPad on my side of the bed so I was laying where I should be and this made me sad. Cue more tears, so glad they had hung more fluid I have cried out half a litre !! We chatted about what I needed to say to the doctors if they made it to ward rounds early. Will the nutrition start immediately? What about the weekend pass? Ultimately I have decided that I am wiling to pay to see Prof Aziz at his private clinic and get help, he will know!! We said goodnight, he promised to come up in the morning and would leave early afternoon. That way if it all goes a bit pear shaped he can take me home!

I laid down and settled, my brain wouldn’t switch off though I kept thinking about all the lies and crap I’ve been through over the past ten days! I kept replaying over my head could anything different have been done? So sleep evaded me, I got some, then I was awake again, then I was asleep, it was all just too much by 5:30 and I gave up……

Being in Wexham – Day Nine

Could the night have got worse? Well yes just after 7am they started doing obs and of course I was trying to sleep, they woke me so that was the end of me napping. Next thing I know nurses are running, crash cart is called for, doctor is bleeped for, yes you guessed it the old lady in the bed next to me had passed away. Oh my god between exhaustion and shock I was beside myself.

The day staff came in and did handover at the end of the beds, they were told about my bad night and with that I was weeping. I wanted to go home, enough was enough.

Andrew finally woke up and after a few messages he started getting ready to come in. We knew he would probably miss the doctors and he just wanted me to find out when was the MRI? About 30 minutes later three doctors were crowding round my bed I was again in tears, I really was at the end of the line now, tired, in pain, distressed and losing the will. I just wanted out. First question “how are you?” Why do they ask that? It’s the stupidest question to ask anyone laying in a hospital bed, because if they were great they wouldn’t be there. So I said I felt awful, I told him about my night, the pain, the history of the pain, the EDS, PoTs and he said we will schedule the MRI for tomorrow.

I got a wash and was sitting in my wheelchair when Andrew arrived, but soon got back in bed. We were told the doctor was coming to see us again, we waited and waited but again it didn’t happen. The consultant came onto the ward but didn’t want to speak to me as I hadn’t had the MRI. So it had been pointless Andrew hanging around all day long waiting to discuss my situation with them.

Over mealtimes I tried my best to eat, if I want to get home I need to try something so at the moment it’s liquids, soup and ice cream. In the evening the soup turned up and I couldn’t even tell you what it was, it was watery and tasteless. Basically zero nutrition for someone who needs maximum nutrition, Andrew lost the plot. He went to the shop to buy a tin of soup, which of course they wouldn’t stock. When he got back he decided to speak to the nurse in charge and calmly explained the situation, how over the previous 7 days Wexham Park hospital had left me on a ward to malnourish to a dangerous level and lose 5 lbs. The boss of the catering company came to speak to us both and tasted the soup she agreed, it was awful. She offered alternate suggestions and that sounded like a plan.

Before Andrew headed home we had a chat about what I was to do in the morning at ward rounds, because they tend to be early. IF my MRI is not planned for any reason then I need to find out why, because a priority should be made of my case, after all I’ve been hanging around for ten days. I want to go home now, I’m getting sick in this place and right now I hate being here.

As he left my heart broke again, letting go is so hard when all you want to do is go too. I know he’s here for me as much as possible and I love him for that, I just find it a struggle, especially at night when I’m vulnerable, alone and scared.

I watched a bit of TV and then Andrew and I said goodnight via FaceTime, he showed me one of the cats too, it made me miss home more. I settled down for the night once again, the night nurse asked if I would like my privacy curtains drawn after the events of the previous evening, I of course agreed. I had my space and it felt a bit better, I put my headphones in and set them to noise canceling, and tried to sleep. It was a better night, the MH patient was shouting at her imaginary friends but she wasn’t as violent as the night before. I was still awake hourly, almost checking all was still well with my world. Let’s see what the morning holds …….

Being in Wexham – Day Eight

I was about to drift off when they came to take my blood pressure at 6:30am, typical …. So I decided to give up on sleeping it obviously wasn’t meant to be. I laid in the dark pondering on the events of the day before and dreading what may happen today.

The day staff arrived and today’s named nurse I haven’t seen before. She came to do my drugs, introduced herself and was very thorough. She gave me hibiscrub, to prevent MRSA, they had run out so I hadn’t had any before now. She then ran through my own medication and asked what I needed from them, just pain relief. She asked if I would like an Ensure drink, I declined and checked if I would be eating breakfast, I explained I wouldn’t as it was causing too much pain. She then asked when I last moved my bowels, the first nurse in eight days to ask!! So I explained a week last Monday, she was horrified, so something was given to help me. I asked about the bed move and she said that fingers crossed it would happen but A&E take priority, however obviously the bed managers would be aware of my situation. She explained she would keep me updated as soon as she knew anything. She seemed very nice.

Andrew messaged to say he wouldn’t be too long and arrived about 10am, we had a short discussion on how little had happened since we had last seen one another and decided that he needed to speak privately to the nurse in charge. He went to the nurses station and asked to speak to her.

Just before lunchtime the nurse came to do my obs she was unusually chatty and we ended up discussing my conditions, weight and all my problems with my stay so far. She hadn’t realized things were this tough, she said she would weigh we when she could and maybe a food chart she be started to monitor what I was (or wasn’t) eating.

At 11:45 my mobile rang, I thought it might be PALS, but it wasn’t it was the GI unit trying to book me for a gastroscopy under GA on Christmas Eve? Are they mad, there was no way I could make that date and anyway I needed a colonoscopy. She was confused, was I sure? Anyway she would book me in and check, how about New Years Eve, I said impossible, both dates are Andrews busiest time so I can’t inflict anymore hospital time on him! I asked if they had anything sooner explaining I was currently and inpatient, she said no the 24th was the earliest so with that she got a bit shirty and said she would call me back and abruptly hung up the phone.

By 2pm we were still waiting to speak to the nurse in charge but a reply from PALS came back via email, I would be moved today at some point this afternoon. The wouldn’t give me a time but I would be moved, it was like a weight had been lifted, but should I get my hopes up?

Andrew needed to be back at work at 3 o’clock so headed off at quarter too. It was a tough goodbye, with things hanging in the air I just felt vulnerable and didn’t want to be alone, but I had no choice work had to be done!

He’d been gone less than twenty minutes when I kept hearing my name being mentioned at the nurses station, always a worry. Eventually a nurse in a very smart grey uniform with a red belt approached my bed, she explained she was the sister of Ward Two. She was here to discuss my complaint, she rolled straight into a huge apology and how lessons needed to be learnt from this matter. What I didn’t realise was our wires were crossed she was referring to the Endoscopy procedure problem I had, I thought she was talking about the last eight days! I updated her on the current situation and she went to read my notes. She came back to reassure me I was moving, I would be having an MRI, then decisions would be made about ongoing care, in the meantime she told the nurses on my ward to get a bag of fluids hung. With that she told me she would see me soon on my new ward.

I called Andrew straight away, I needed to let him know the news it would be a relief for him and he was heading to work for the evening. It was the happiest I had heard him for a week.

Less than 45 minutes later the porter arrived and I was on the move, it was such a shock, but a pleasant one. I was soon in situ on my new ward again by the window. They immediately started checking my obs, then when food was served wanted to know what I ate, then how much water I drank, had I been to the toilet, they were really keeping a close eye on me now. Most importantly the bag of fluids was no longer being slow dripped into me, it was being pumped into me. I settled down to rest I was exhausted.

A little while later a couple of good friends popped up to offer their support, which was most welcomed. To know they are there to help us when the going gets tough is fab so thank you, both of you xx

Once they had gone the ward descended into near silence, this was the exact opposite to Ward 20, so I curled up and enjoyed the quiet time, messaging Andrew.

Sadly it wasn’t to remain like that at just gone 2am one of the patients in my bay who has obvious mental health issues decided to kick out towards the nurses, she was screaming and shouting and being aggressive generally towards everyone I was genuinely scared. This carried on for over two hours by which time I was in tears from exhaustion and in pain, the nurses kept saying sorry but it wasn’t their fault, I asked for oramorph which they gave me. I text Andrew knowing he was asleep but begging enough was enough I want to come home. Eventually she went quiet enough to be able to sleep .. I dozed a little but was still wary that she might start again……

Being in Wexham – Day Seven

I woke with the pain and to a beautiful sunrise, felt optimistic that today was going to be a good day 😀. Andrew was heading in early so I didn’t worry about seeing any doctors alone, that reassured me. I was now feeling intimidated by the staff, like I was in the way. Do you know what I mean? I’ve made a complaint caused ripples in their pond, so they aren’t happy with me? Maybe I’m just paranoid or so down now but that’s how it felt.

He arrived and thankfully no one had been to see me, first things first, he took me to get a wash so I was nice and clean again. Once back at the bed it wasn’t long before the surgical consultant from yesterday was on the ward, my HR went through the roof 😞. He came straight to my bed shook Andrews and my hand, then opened my notes, said oh she’s been handed over to gastro, they are dealing with ongoing care and left my bedside. That was it, they were all gone.

The rest of Andrew’s visiting time until 2pm was a waiting game, we were hoping for that elusive move to Ward Two, but it didn’t happen, no medical team arrived, no gastro team arrived. Basically nothing happened, so none of the plan from the day before had been commenced. I tried to eat a little dinner, however that failed again, I continued to sip at water, but still there were no fluids hanging via IV. Andrew was concerned as he left he spoke to my nurse who assured him she would be with me when the medical team arrived and she would continue to chase the bed.

All afternoon I laid there, I think I’m getting more depressed and stressed and of course that is contributing to pain levels. Which is also making my PoTs symptoms worse, I can barely stand for 30 seconds without dizziness and blacking out, my HR is going all over the place and my BP is up and down like a yo yo, but they have no idea what this is all about.

I spoke to Andrew at 6pm and he was upset to say the least that still nothing had been done, he wanted me to get in touch with PALS again, but I didn’t want to cause more ripples in the pond, I’ve lost my fighting spirit. He didn’t know what to do at that point, he was busy and was unable to visit, so DD came in on his behalf, she had instruction to ask for fluids. Which she duly did as soon as she arrived. The nurse came over looked at my chart, despite knowing full well I had no fluids written up, and said I’ve had nothing prescribed, she asked me again (for the second time what I’d eaten/drank) so I told her again, she said while I was attempting I wouldn’t get fluids. I had tolerated 1/2 jug water and probably two mouthfuls of soup! That doesn’t cover the normal two litres of fluid a day our kidneys are meant to process, and then I worked out I hadn’t used a toilet for 24 hours! Again I couldn’t be bothered to argue.

The other point the nurse made was no internal bed exchanges were being made within the hospital at the moment, so why hasn’t she told us that earlier?

I was devastated, I’d been kept hanging around for a week, the nurse stated I wanted to stay in hospital, I don’t “want” to stay in, I need to stay in for the correct diagnostic procedures and treatments to be carried out which they should have been over a week ago. DD calmed me down.

At that point our local Pop Goes the Choir turned up round my bed and sang a medley of Christmas songs, it was such a surprise and in the end the whole ward was crowded round and enjoying it. It was fab to see them all and get so many hugs, I smiled for the first time in a week. So thank you PGTC x

DD nipped out to get a drink and when she came back she bought with her my sister in law, brother in law and niece. I just sobbed in their arms, S-I-L sobbed back, I needed to let out all the emotion of the last seven days, it was all getting too much. I explained briefly what was meant to be happening, but what was actually happening, they were both horrified. Nobody has any answers, what should I do, how should I do it? But it was just nice to see them.

They stayed a little later than the 9pm cut off time as they had travelled so far, all too soon it was time to head off, lots of hugs and kisses later and finally I was settling down.

I spoke to Andrew briefly and he was still upset with my treatment today, the plan was for him to come in tomorrow and meet with the matron and discuss ongoing care. He insisted I email PALS so I typed it up and sent it to him for proof reading, he was happy with it and told me to send it. I sent it across.

Once again I didn’t sleep well, worrying about the email, noise, pain, it’s all getting to me now. Maybe I should just go home I would get more rest and Andrew is a much better carer!!

Being in Wexham – Day Six

I did manage a little cat nap, but knew I needed to be up and organised for my outpatient appointment with the neurologist. The nurse came to do my obs and I decided to go and get a quick wash and brush my teeth, basically make myself presentable. By 7:20 I was sitting on my bed ready to go however nobody had come to get me, the clinic rang the ward and reminded them about me, they had forgotten.

I was quickly loaded into my own wheelchair and whisked up to outpatients, no waiting around when you are first appointment of the day either. We went straight in and met with Mr Wade, he seemed to remember me, which was surprising. He was interested in my new diagnosis’ and I then explained about having seen Dr Mark Weatherall, he described him as the king of headaches and this reassured me instantly. I knew Dr Weatherall was the right man for me!! He asked about my abdominal pain and what tests had been carried out, I explain nothing so far, he was angry. He said what a waste of time, I should have been cared for well before now. He told the nurse to get it sorted! With that the consultation was finished, he felt that being referred to Dr Weatherall was the best thing, and he would chase that up for me too. So all in all it was quite nice to see Dr Wade again.

Back to the ward I went to start the waiting game, to see if a GI doctor would arrive. Of course the surgeons started doing their rounds, another new one. This one was very matter of fact, abrupt and didn’t listen to my needs. Basically I was discharged, still not eating, only sipping water and in a chronic amount of pain. However I wasn’t to worry they would organize a colonoscopy as an out patient, that would take weeks!! If I didn’t eat for weeks I would either end up re admitted or dead!

The surgical consultant and his entourage waltzed off and I just burst into tears, the nurse tried to comfort me. She asked why I was so upset, I explained I had been kept in for 6 days had no investigations done, had only 8 bags of fluid in 6 days so still wasn’t feeling well, was still unable to eat or drink large amount yet a hospital was willing to send me home, where was the care in that? She said tell the Dr, I told her he wasn’t listening to me, he’d kept talking over me, almost just bullying me. I felt helpless and torn, of course I wanted to go home to Andrew and my family but I wanted to go home well. I didn’t want to go home unable to eat and find out in three days I was in the same mess and another ambulance needed calling. At that point the consultant came back and found me in tears, he tried the sympathetic approach but still wasn’t listening, it was all about his surgical bed, I kept saying I hadn’t wanted the bed, I needed the gastro team and that’s what I had been waiting for for 6 days!! I rang Andrew, and the consultant decided to speak to him, well obviously that just got messy, and my day fell apart. Andrew was stressed, I was upset, stressed and by now in the most severest of pain from all this.

I threw my belongings into my bag and resigned myself to going home, I requested to see my notes, so I could double check what had been done over the last 6 days. Firstly the staff got very defensive over giving me them, once I assured them it was nothing about my nursing care, it was purely about which Drs I had seen and what they had said they agreed to me seeing them. They could hardly refuse, they are my notes after all, but it took them an hour to bring them to me. In that hour I contacted PALS, to register a complaint against the hospital, I was advised to send it in writing, so I started a lengthy email. Once I had my notes I was able to use them to elaborate the points in my complaint. The delays in referrals, the fact that no bed request was made at all on Friday, I had been lied to for too long I was so upset and now getting angry!!

At that point a couple of friends turned up, who actually work for the trust, they could tell I was upset. I told them what had happened and they were horrified and ashamed that the hospital they worked for could treat patients that badly. The junior doctor who had been with the consultant was still buzzing around and as he came to my bed I agreed they could speak on my behalf. They spoke up and explained who they are and how they felt, they mentioned patient care and started speaking hospital jargon that I haven’t heard of. He went away and I let him get on with it, as far as I was concerned I was still going home, I had already sent the email to PALS, I had called them and they were in the process of reading it.

A few minutes later I got a call from Andrew checking in, I updated him but told him to stay away for now he was too stressed out and this place is a pressure cooker for emotions. No sooner had I put my phone down it was raining again, it was PALS, they were letting me know a Gastro Consultant would be down to see me as soon as possible. Finally we were getting somewhere, only taken 6 days and a huge amount of stress but finally !!

The ward continued with the discharge paperwork and at 14:45 I was classified as no longer having a bed. Gastro still hadn’t been, so where were they going to examine me, I was still meant to be an inpatient until that consultant decided. My friend told me to immediately call PALS and get the discharge stopped which is exactly what happened.

About an hour later after six days finally the Gastro Consultant arrived, good job I was laying on the bed or I would have fallen over! He asked my friends to leave as they weren’t family, sadly Andrew hadn’t arrived yet. He went through all my problems and it turned out he was the chap who had done the Sigmoidoscopy! We spent about twenty minutes chatting about everything, the pain, lack of nourishment and fluids, having no investigations whilst being an inpatient and having been stranded on the wrong ward!

He went away to call Dr Levi to make a decision about my ongoing care, basically what next. He came back and stated they would do an MRI enterography, as a matter of urgency again they wanted this done as an out patient. By now Andrew was with me, he felt the consultant wasn’t listening and said ok that’s fab thank you but in the meantime what do you suggest, look, he grabbed my skinny arms, she will be dead in the six weeks wait to get the MRI. That changed his attitude he said I will make my own decision, you are being moved to the GI ward under my care, you will have the MRI, you will get a calorie break down and their goal is to get me eating and drinking. It was like a weight had been lifted from both our shoulders. We thanked him and he left.

Finding a bed on ward 2 is obviously not as simple as that, so I spent another evening and night on ward 20. It was a restless broken night, but I am used to those. There was so much movement on the ward with arrivals of trolleys that it was hard to get any rest. Let’s see what tomorrow holds !!

Being in Wexham – Day Five

So after a very broken night following the receipt of that email, as well as the noisy ward and the pain. I was awake as usual before the lights were switched on. I lay quietly pondering what the day would hold and would I get lucky and be moved? Finally it was time for the nurses to do our observations. I do feel sorry for the night shift, by the time it gets to morning, they look exhausted, after a brief chat, she carried on with her duties. It’s funny at the beginning the nurses can be really standoffish however the longer you are in, and the better they get to know you, the nicer they become.

Next up was pain medication, which I was more than ready for. I decided after that I would get up and sit in the chair ready for a freshen up. One of the nurses bought me a bowl of water and I sat and got washed by my bed. Half way through the surgical team arrived to see me again, such a pointless task now, again I reiterated I only needed a bed on the GI ward, the Dr confirmed he would chase again! With that he was gone, I didn’t even have time to ask him to write me up for my fluids which I needed or discuss the rash on my leg which was getting worse, I’m beginning to give up!!

I thought I would try sitting out and see how I coped, well I managed about half an hour then it wasn’t just the pain, my PoTs symptoms were all over the place, I was so tachychardic 😢. I immediately asked my nurse if I could lay back down I needed to rest, I had chest pain from the thumping in my heart so I needed to calm myself down. It took quite a while but eventually it happened.

Next I had a surprise visitor, the lovely @mummybarrow drove all the way from Hampshire to see me! She bought me so many gifts too, it was far too generous, however don’t ask her about the dolly mixtures apparently! Andrew arrived and we spend a little while nattering, then T has to get home to her own busy life, it had been lovely to see her. Such a nice surprise.

I had agreed to try and eat at every mealtime, so ordered soup for lunch and dinner. I managed about 1/3rd of the bowl and Andrew was pleased with that, however soon I was back in agony, food I had eaten food. This is why I was avoiding nourishment 😢. I got some oramorph and settled down for a nap, but was unable to sleep due to waves of pain. I just rested until the pain relief was in my system enough to take the edge off the constant waves of agony.

Later that afternoon DD arrived and she had been shopping for me, for new PJ’s and fluffy socks to keep me warm and comfy in the hospital. She is so thoughtful. She even bought a bracelet that we both wear half of, a “best friends” bracelet”. Before she left we headed to the bathroom and I got changed into some new PJ’s

The rest of the afternoon was spent quietly resting, I was feeling rubbish and Andrew was exhausted. It was nice to just be quiet and be us. Just before home time as we were getting organised we noticed I have developed a bed sore on my left elbow, so I need to speak to someone about that! Also DD wants me to ask about my rash again, it’s looking worse in her opinion. So that’s two things to deal with tomorrow.

Andrew headed home just after 8:30pm, he had some bits to do there. Watching him go is getting harder night after night. I’m hating this forced separation. The meds round seemed to take forever, I was the last bed to get medication 😦

So I settled down for as good a night as possible, I had T’s face mask, noise cancelling headphones and was dosed up on STRONG painkillers. What could go wrong? Still I couldn’t sleep soundly! I woke the first time thinking I had been asleep all night, to find it was only just midnight. Then I was just restless between 2am and 5am. Sadly at 5am I woke with a start, a sharp pain, then one of the elderly patients who we’ve all grown to love seemed to be having a bad night and really woke me up. I was wide awake by then, I tried for another cat nap before the 6am lights on 😦

Trolled Again !!

So as I mentioned a little after 9pm on Saturday evening I received an email saying someone had left a comment on my blog. Now this is tragic as this person obviously has no life, because I can think of a million better things to do at 9pm on a Saturday than reading the blog of a chronically ill person just to critique it.

Yes it upset me but that was the writers intentions, I do have my suspicions as to who it is, he/she states they have seen my Facebook and Twitter posts, now my Facebook is locked to only friends, so this limits the number of people who have access. I have the IP address from where the email came from WordPress is very clever like that, so my best friend, has a internet security whizz, looking into the matter for me and hopes to pinpoint the location from where the email is sent. So “Walter Mitty” you can hide behind a pseudonym but you can’t hide your location.

I was in two minds about publishing the comment, so decided I would go one better and blog about it, give it its own glory.

Firstly here is the comment.

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Dear Walter Mitty

Firstly thank you for taking the time for reading my blog and giving me your feedback.

I’m sorry you feel that I’m wasting resources & public services, however I’m fully aware how overstretched they are. I sit and lay here day to day watching these poor nurses run around like lunatics, thankfully my husband is able to visit me on a daily basis and do a lot of the basic nursing care so they are able to look after the elderly and post operative patients.

I am bed bound, on my particularly bad days, that is the problem with Ehlers Danlos and Postural Tachycardia, you have to take each day as it comes.

We were lucky enough to travel this year on three occasions, are you suggesting wheelchair users aren’t meant to travel?

As for money spent is that any business of yours? Needless to say our trip of a lifetime was bought and paid for before I lost my job last year. So I don’t see the relevance? I didn’t drive to France, I no longer operate a vehicle on a regular basis, my husband did. I’m not willing to break down costs to a troll like you just to make you feel better!

Currently I do need benefit and I am entitled having paid my NI since the age of 16, excluding the time I had off whilst having my children. So if I’m entitled I have every right to claim.

Next you mention about the Singapore flight vs bed changing. I never said they couldn’t change my bed I said I couldn’t cope being out of bed all day. As for my bed it hasn’t been changed since I arrived on Tuesday and I don’t care, I understand they are busy, it hasn’t been made in two days, they are busy. So what !!

If you don’t like my attention seeking ways then please do not read my blog, simple as, if you find it that offensive, stay away. As for suggesting people are uninterested of my imaginary illness, how wrong you are. I have found people are so supportive of my Ehlers-Danlos, because it isn’t heard of from day to day, people often ask lots of questions, some which I can’t even answer.

If you feel this is imaginary please log onto the Ehlers Danlos website and hopefully it will educate you in something you obviously have no understanding about.

My hope one day is that I get better but there is no cure, so I have to live my life, make memories on the good days and try to get better from my current GI issues.

I hope this addresses all your main issues. Now please get off my blog!

Sarah

To all my other reader who have been true and kind to me, thank you for your support, long may it continue xx