Feeds:
Posts
Comments

Posts Tagged ‘Explaining Illness’

This morning I received a letter from someone I used to work with.  A lovely letter but it made me feel sad all the same.  It made me realise that I’m really not going back.

It feels strange even calling it my ‘work’ now, when I haven’t actually been there for almost two years.  We are stuck in a bit of a quandry where I can’t resign because I’d lose entitlement to a certain financial benefit; yet they can’t end my contract because Still’s Disease is covered by the Disability Act and if they did I could make an issue of it – not a good advertisement for a top Special Educational Needs school.

The decision we have made recently is to go for Ill Health Retirement, which means an independant doctor needs to agree that I will be unfit for work for the next X amount of years.  My employers think this should be straightforward, but we have played it quite positively up until now, hoping against hope that I would one day be well enough to return. That could go against me now, even though my Rheumatologist’s report will stress how dire my circumstances have become.  As sad as I am to see the job go, I just want it all tied up now. I’m tired of the ‘disciplinary’ meetings and reviews; the phonecalls and letters, of just having it lingering in the background all the time – guilt.

The letter was from one of the few people that I’ll miss and I’m glad that he wrote, because I made the mistake of isolating myself from them; hiding myself away, embarrassed by the difference my illness made to me from the person I was when ‘well’ and working. I kept telling myself I’d go and see them when I was feeling up to it, but up to it never happened and now I feel bad that two years has passed. This letter has spurred me on to write to the ones I will miss and hopefully we will be able to keep in touch away from work. Maybe one day I’ll even feel strong enough to go into the place that I used to love so much, a space that was once mine.

And hopefully I’ll find another job one day, one that I’ll enjoy just as much and be able to give my all to. Because, despite the retirement label, I can work again in the future if I’m declared fit and that is my goal.

L

Advertisements

Read Full Post »

I seem to keep following up every positive post with a negative one, but that is just how things are at the moment – I am definitely on the ‘Still’s Rollercoaster’ and wanting to get off.

Last night was the hardest night we have had in a while. As well as the obvious hip pain, I had been seizing up more and more as the day went on; my elbows, shoulders, neck and collarbone were pounding and I could barely move my upperbody and then when the time came round to move me from our upstairs Snug to the Bedroom, I discovered that both my knees were so swollen that they wouldn’t bend an inch. Trying to get me up from the sofa when I was unable to bend or weightbear with either my upper or lower body proved extremely difficult and there were a lot of tears from me and looks of sheer panic from my boyfriend. Even once we managed to get me on my feet and changed, we had the same problem trying to get me into bed. I couldn’t move my limbs myself, couldn’t shuffle or roll or do anything you take for granted getting into bed; I really thought I was going to have to sleep back on the sofa.

So swollen and full of fluid it won't bend - you can see the difference to my skinny legs.

Somehow we managed to get me in the bed, propped up slightly on my back and with a pillow beneath my locked knees, which wouldn’t fully straighten either. I’ve been this way with my knees before (many-a-time) but can usually compensate with my arms; the fact that I felt every single joint in my body was giving up on me and swelling with fluid despite all the cortisone injections, is what made it so tough. I was in bed but I was now helpless, unable to move an inch without extreme pain, or to even shift the duvet, which suddenly felt like a ton weight. This is a scary feeling; I’ve felt it before but this is one of the worst times yet. My boyfriend was on call and would have to wake me to administer Oramorph each hour until I found some relief from the deep throbbing pain that had my body in a vice… but eventually, I did manage to drift off to sleep.

The point I wanted to make though, is how much this is all affecting my boyfriend too.  I am so lucky to have him; he’d do anything for me and that’s part of the problem – because he still sees me suffering, he feels like he isn’t doing enough to take it away.  He’s starting to look exhausted himself; the weekend away helped but now we’re back in the routine of him caring for me at home and working full-time it is taking its toll again.  Plus, he can never really leave it behind when he does go to work. He says I’m on his mind all day (not in the usual way unfortunately), he can’t concentrate properly and is making silly mistakes because he is so distracted and tired. He came home complaining of sore ribs last night and only remembered after a few hours of being home that he’d actually had a bit of a fall, which explained the pain. I mean, how do you forget something like that?

I worry that he might see me in a different light all of a sudden, in fact, every time I need help dressing or getting into bed, or off the toilet or when I move like the tinman; that he’ll be put off by the rashes, the Pred cheeks and swollen, deformed joints I keep presenting him with. We’ve been going through this flare at some level for two years now which has been bad enough, but this is the worst he’s ever seen me and I know he is shocked. But he is never anything but loving and supportive, telling me that we will get through this together. I know how much it must scare him though and it breaks my heart. I want to be able to reassure him that everything will work out and I do try. At least I’m lucky enough to be able to look back on previous flares and be reassured that thing did get better; for him, this must seem neverending and unfathomable. It’s almost as if I now want to get better for him more than anything else, to give him a slice of normality again and show that this isn’t how our relationship is going to be forever. I want to make him feel better.

Because it’s so so hard for him to watch me going through this… and it’s hard for me to know that too, but how do I protect him from it? I hope, that when we can put all this behind us to some extent, our relationship will be stronger for it, but for now all I can think is….

Cruel disease.

L

Read Full Post »

{Backdated Post}

I woke up some time around 6.00am, Thursday morning, on a different ward – The Emergency Admissions Unit (H3). My boyfriend and his mum must have gone home, but there was a young doctor sitting on the edge of my bed ready to ask the usual admission questions about what had led up to me being there. I was slipping in and out of sleep and I’m not sure how much sense I made, but I’m sure I had a good go at getting things across. The nurses from A&E had already filled everyone in on my level of pain and immobility; I relaxed believing I’d now get the right care.

I was woken again a little later on, by a nurse that I’ll call ‘nurse M’, telling me she needed to change the bed and I would have to get up and sit in the chair. I was in a lot of pain again by this time and tried to explain this to her, simply expecting assistance or an alternative approach.  Instead, nurse M gave me a very scathing look – “so you can’t get up at all?” she asked, “how did you get to the hospital, in an ambulance?” I tried to explain exactly how difficult it had been to get to the hospital and how we did it out of sheer desperation, but she interrupted – “So you’re saying to me that last night you managed to walk but this morning you can’t?” Nurse M raised her eyebrows and went on arguing with me, without letting me explain, until she finally said “fine, if you want to lie in your own filth all day in a dirty bed that’s entirely up to you!” She turned and walked away, holding her hand in the air to silence my answer.

I was shocked and upset by her attitude, especially since I had done nothing to provoke it – it’s not exactly my nature to be awkward or cause offense, quite the opposite really. The young doctor had witnessed it all and approached nurse M, explaining that I had a severe longterm medical condition, was in a lot of pain and being kept immobile on the advice of the doctors and that she should learn to be more sensitive. Nurse M even had the nerve to shrug and walk away from her, mumbling ‘whatever’; she was obviously used to intimidating people and felt herself above the younger doctor.  I realised at this point that nurse M was going to be a problem, I just didn’t realise how much.

The next few hours were torture, literally. My pain returned to the level of the previous evening and I became quite distressed; yet my calls for help were ignored by both nurse M and the other staff. I was aware of her discussing me with them and felt that she was influencing their opinion of me, but have no idea why she took such an obvious dislike to me. I also overheard a lot of other things. For instance, once she discovered that I was due to have my Tocilizumab infusion that morning, she complained that she did not want me on her ward as it was an expensive drug; even when another nurse explained that it was paid for, prescribed and waiting for me on my regular ward she was adamant I leave.

Feeling desperate for the toilet, I asked for assistance and was offered a comode despite the fact the doctors had told them to keep me in bed. They were still due to investigate the hip, as well as some back pain, and until we had answers I was supposed to be kept immobile. I was too overwhelmed with everything to argue though and with assistance (and a helluva lot of screaming) I managed to go. Unfortunately, when I buzzed to be helped back to bed, it was nurse M that came and she wasn’t happy. She told me she couldn’t offer me any physical support as she ‘had her own problems’ having been off work for four months with a bad back; I requested that she find someone else to assist me, as I wouldn’t manage without, but she just said “come on, let’s just get it over with”.

She offered me her hand and I put some of my weight through it but was hardly off the comode when she let me fall and shouted out, grabbing her back. The curtain was whipped back with me lying prone – half on the bed and with my pants halfway down – as she made a song and dance, letting everyone know how ‘that girl’ had put her back out. The staff crowded round her, telling her to go and rest and offering her pain relief, but I was left to struggle and sort myself out; totally humiliated and in excruciating pain, not knowing if I’d done any further damage. Nobody cared. And nurse M made a point of complaining in front of me for the rest of my time there too.

There is more that I could say about nurse M’s mistreatment and bad attitude, but I think this is enough to give you an idea of how serious things were. I have already spoken with PALS – the Patient Advice and Liason Service – was visited by them during the rest of my stay and am in the process of putting together a formal complaint against her. Not only because I want an apology for myself, but I worry that if she treated me in this way, (when I can at least speak up for myself a little), how is she treating people who are more vulnerable and can’t communicate such treatment to others? She is working on a ward with a high intake of patients and I wonder how many of them are experiencing something similar to what I did, it’s frightening and totally inexcusable. No wonder both my grandmothers were terrified of being admitted to hospital and preferred to suffer in the comfort of their own home. The care you can receive in hospital is totally unpredictable, ranging from superb to abuse; I have been aware of this for a while, but this time I’m determined to do something about it. /rant over

The hours passed slowly. Throughout most of this, I was in some of the worst pain I have ever experienced and as a result was constantly crying, whimpering and groaning (I don’t mean to sound dramatic but that’s how it was – pain does funny things to you). I was told that I wasn’t due any pain relief, although we found this not to be the case later on. Nobody paid any attention to me; I was totally alone, humiliated, confused, scared… especially as there seemed to be no sign of anything changing and the pain just got worse and worse. I became totally desperate and tried to text my boyfriend’s mum, asking her to ring my infusion ward to see if I could be transferred there as soon as possible. They knew me there, they knew I wouldn’t play on or exaggerate my pain/immobility, would be more understanding… anything to get me away from all this.

Then my phone rang and it was my mum; she had phoned the ward to see how I was and had been told I was fine but had had ‘a few tears’. Realising this didn’t sound like me at all she’d decided to speak to me herself… she was shocked by what she heard. I was so distraught with the whole situation by this point that all I could do was sob down the phone. Like all good mums, she promised she would sort it out for me and I knew that she would. It turns out that she rang my Rheumy’s secretary (who we have a good rapport with), and explained what was going on, in tears herself by this point. My rheumy was at a conference that day, but the secretary sent his registrar Evin down almost immediately.

I have never been so happy to see a Rheumatologist! Things turned completely on their head from that point but I’m still a bit traumatised by what I went through. I was given pain relief immediately, after a seven hour gap, but the pain was that advanced that it took further doses to get to a bearable level. The registrar examined me, spoke to my rheumy over the phone and came up with a plan of action straight away. My friend and my mum came to see me and although the pain was better by then, I think it still came as a shock to them. Strangely, I didn’t see nurse M again – I’m guessing she decided to keep her distance.

The rest of the day is a massive blur, as I was drifting in and out of sleep. I had multiple Xrays at one point, of my hips, neck and spine and heard them mumbling things about lines and shadows and necrosis… But the important thing was that my pain was starting to be more controlled; my mum and friend were there and my boyfriend would join me later… I felt safe.

I went straight from Xray to Ward J6, the ward next door to my infusion ward and a ward I have spent time on before. Again, I don’t really remember much as I was so out of it, but I finally felt I was going to get the care I needed.

L

Read Full Post »

{Backdated Post}

Things on the gastric side were looking up. I got the results back from yesterday’s Endoscopy and they showed that I had Gastritis – significant inflammation of the Oesophageal tract (which also explains the widespread chest pain), Stomach lining and Duodenum; not nice, but better than the ulceration that I had been concerned about.  Fortunately, all the IV medications I had been taking since being admitted were helping already – a combination of  Anti-Emmetics, (which close the top of the stomach and encourage things to flow in the right direction, as well as helping with nausea), Proton Pump Inhibitors, Antacids and H2 Blockers.

I still had some pain, but was told that it would take time for this to settle down as the inflammation eased. A nutritionist advised me to alter my diet and cut out certain irritant foods for a while; mainly spice and acidic foods such as tomatoes, peppers, onions, cheese, fruits and juices – all of my favourite things basically. Instead I was to eat lots of potatoes, white meat and fish, pasta, rice and vegetables, also things I already eat a lot of so no problem there. Hopefully, these limitations won’t be forever though as I’m a big foodie and like variety! Their guidelines said a strict diet for 4 – 6 weeks, after which I can start trying myself out with things a little bit at a time to see how I go… well except for spicy food, that’s going to take a lot longer and I love my spicy food 😦

They also stopped my Naproxen and Cyclosporin as they felt that these two drugs in particular had contributed to the Gastritis. I should mention that they did liase with my Rheumatology team throughout my stay and that they felt it was more likely to be the Methotrexate that I stopped recently. But, I was under the care of Southport Hospital and respected their wishes for the time being.

Things didn’t stop here though and another problem soon arose. As time progressed, I started to notice that the dreaded temperatures and sweats were increasing, plus I was starting to develop a very visible Still’s rash all over my body. I tried to show it to the nurses and doctor, to explain the significance of it and what usually followed, but I had been admitted with gastric problems and they were their only concern. It turns out that the two were connected though and that I potentially hadn’t been absorbing my oral medication for a month or so, leading to the major flare that follows.

As today went on, I became less mobile and able. I felt the pain and stiffness sneak into my joints; first making it difficult to reach for and hold things; next I began to struggle to sit and stand without help and then even hobbling the short distance to the toilet became a huge effort. By evening I was in a pretty bad way. A nurse finally listened to me and gave me the IV morphine I’d been prescribed to cover all of my pain whilst off oral meds; I wasn’t expecting any visitors and so fell asleep for a few hours – big mistake!

I woke up from my nap with all joints a-throbbing and found it impossible to even lift my head up, never mind sit up fully. This happens to me quite often, especially if I lie flat on my back for a time – I don’t know if it is simply part of the Still’s Disease or some throwback from the Dermatomyositis (a form of muscular dystrophy) I was diagnosed with at 14, but it has always been a big issue for me.  I buzzed the nurses to explain and was told that myself and another lady were being moved to another ward shortly and that they would sort me out there. Ironically, we were going to the ‘upwardly mobile’ ward, just at a time when I felt anything but mobile.

The problem about switching wards is that you have to make the staff aware of your problems all over again. It was obvious that they weren’t expecting a patient that had to be transported on a bed and pat-slided (a word I came to dread over the next week); this was a ward you were sent to  recover and prepare to be discharged. The two female nurses were lovely to me as I explained my difficulties and promised to find me pain relief and assistance; however, it turned out that they weren’t fully responsible for my care. It would be a male nurse called Conrad that would make all the decisions.

The first decision he made was to keep me rolled onto my left side, with pillows propped along my back so that I couldn’t roll flat. This was because he’d read in my notes that I was feeling nauseous and didn’t want me to choke if I was sick while lying on my back. Yes, I can see the line of thinking here, but I was no longer vomiting or even feeling sickly. The next decision he made was that I looked ‘too young’ to need any form of pain relief stronger than Paracetamol; I heard him say so at the nurses’ desk, which was a stone’s throw from my bed. When I told him I’d been on longterm pain medication for 16 years and that I knew Paracetamol wouldn’t help, he told me that it was ‘stronger than everyone thought’ and to ‘trust me, it’ll do the trick’.

It didn’t.

An hour or so later, I was in tears with the pain but he would not budge on the matter, even though I had actually been prescribed IV morphine and Oramorph by a doctor. I remember thinking it strange that my main pain seemed to be coming from my ‘good’ hip, but then I had been lying on it for over twelve hours by this point. I had no idea then just how bad things would get.

The night went on and the pain grew worse, but I must have managed to fall asleep at some point because I woke at the start of a nightmare the next morning.

L

Read Full Post »

{Backdated Post}

Things were more settled today; the IV meds and being nil my mouth had stopped the vomiting and the morphine was helping with the pain. I got the go ahead to have an Endoscopy / Gastroscopy procedure later on this afternoon. This is where they put a fibre-optic camera down your throat to look at your Oesophageal tract, Stomach and the Duodenum, which is the upper part of your intestine.

I’d had this procedure done at the age of 19, during an episode of vomiting fresh blood; however, that time I was given gas and was out for the count. This time I was just offered a sedative, which they said would leave me pretty much unaware of what was happening (during and afterwards), and make the procedure easier for them, so I took them up on it and signed my consent forms.

I went down to the Endoscopy department at around 2pm. The staff were lovely and very good at making me feel comfortable and at ease; they explained the whole procedure to me beforehand, as I wouldn’t get chance to ask questions halfway through, obviously! I was a little bit nervous about what to expect, but I have learnt over the years that panicking helps nobody – if you panic, your heart rate increases and you feel more agitated and out of control, your body tenses up and that makes it much more difficult for the medics to get things done quickly and efficiently. I always try and focus on the now, not the ‘what-ifs’, remember to breathe evenly and relax my body as if going to sleep (maybe this is why I am so good at sleeping anywhere!).

They explained to me that they would first numb the back of my throat with an anaesthetic spray that would help prevent me gagging – that part was quick and easy. Next, I was rolled on to my left side and I mentioned my joint problems so that they wouldn’t try and move me too awkwardly if I was out for the count at some point. They then gave me a very attractive gum shield and mouthpiece to protect my teeth from the camera itself; doing so before you are sedated means you get chance to become comfortable breathing with it in place, because it does feel different.

Next came the sedation – a quick squirt into the cannula already fitted in my arm. The first lot seemed to have no effect and so they gave me a second dose a few minutes later. This didn’t seem to work either, but they assured me it would probably just take time to kick in and I would feel the benefits throughout. Unfortunately (?) I seem to be immune to sedation –  in fact, all it did is make me feel more awake – but I’d like to point out that this made little difference to the procedure itself, in my opinion. It really wasn’t that bad because I was relaxed and remembering to breathe, but I understand why people may find it uncomfortable if they are anxious.

The worst bit is when the camera and tubing initially goes down the throat but even that wasn’t terrible – they blow air down at the same time so you make a bit of a gurgling sound (which I had to try not to laugh at) and you find it a little bit different to breathe and I guess that’s the time you’re most likely to panic, but before you know it it’s done.  Once it was down, I was quite comfortable and was able to breathe as normal and look at the screen to see my insides! The camera went all the way down into my duodenum and even took biopsies along the way, but I didn’t feel any of it.

It took about twenty minutes in all and I was aware of what was going on the whole time; the doctor explaining things as he went along. Even I could see the inflammation and a little pouch called a Hiatus Hernia  at some point along the way, although he assured me that particular problem wasn’t what was currently affecting me. Once they’d got what they needed, there was a bit more gurgling and discomfort as they pulled the camera back out and that was it – all done! It was a very simple procedure and I wouldn’t have any reservations if I needed one again, even without sedation.  They had warned me I may feel some discomfort afterwards, but the most I felt was a bit of a raw throat, which quickly disappeared.

Once the Endoscopy was over, I was allowed fluids again and (yipee!) was able to keep them all down. I wasn’t allowed food until the indepth results came back the next day though. Until then, we just kept up with the regime of IV medication with the addition of something to treat the inflammation, which they were now calling Gastritis. So we had a tentative diagnosis and a plan of action by the end of the day; can’t grumble about that!

L

Edit: I have since had another Endoscopy, this time without any sedation. It was bearable but a little more uncomfortable, which has made me realise that I probably did get some effects from the sedation,  just not what I was expecting. I was still aware of what was going on; the main difference is that with sedation I don’t recall feeling the camera doing its stuff in my stomach, whereas when I had the procedure without, I could feel what was happening. This was only mildly uncomfortable, but if you are at all anxious may be more than you want to feel.

Read Full Post »

Most people get ‘Monday Blues’ on a Monday morning because it is time to go back to work, after two days off doing whatever they please. The working week seems too long and the relaxing weekends too short; surely, a whole year of nothing but time to yourself, with no work to go to, must be heaven – right?

Wrong.

If anything, I’m getting the Monday morning blues waking up to an empty house, knowing everyone else is at work, doing something constructive, making a contribution, while I’m left for another day doing…

Well I’m not sure, what is it I do that makes time pass so quickly?

I’m increasingly stricken with panic as the weeks fly by and I appear to be doing nothing with my life.  One person reassured me that I am here and breathing and healing and will get to where I need to be eventually; that, relatively speaking, this is but a small fraction of time.  I can see the sense in that but I still find it hard to relax into the here and now.

Of course I know I’m not well enough at the moment to return to work and I’ve had plenty of people tell me that my priority should be to get myself fit and healthy once again; but it is hard sitting at home, feeling as though life is passing you by. Especially when I know that I’m capable of so much more.

There is nothing wrong with my brain, in fact it works quite well. Despite missing a whole year of school during my GCSEs, I managed to be a straight A student and teachers hoped I’d become a vet or a doctor; but, I spent so much time in hospital over the next few years that such careers soon became just a dream.

Instead, I turned to my passion for reading and studied English Literature.  Again, I was a first class student and quickly gained the attention of tutors, who hoped I’d carry on to become an academic and lecturer in the department.  I started the MA but suddenly had a change of heart when I realised I would be spending my life arguing about ‘possibilities’ – I mean who cared if Shakespeare’s Sonnets suggested he might have been a homosexual Catholic, there was no way of knowing for sure and who would benefit from knowing anyway?

So I got myself a job working in the library of a Special Educational Needs school, helping with literacy and providing out of school activities and support for parents. I enjoyed the work and this is the job that is still (so far) waiting for me, but again I’m feeling a restless need to do something more challenging and worthwhile with my life; yet, something I can manage with the Still’s. Once I’m over this flare of course.

I quite often feel like this during a major flare and, in the past, have always used them as a fresh start; only this time, I don’t know where to begin.

*sigh*

While we’re on the subject of work, after a tough few years, one fellow Still’s sufferer, Kate Dowding, has achieved her lifelong dream of working in law and was recently featured on the BBC programme, Saints and Scroungers, which addresses the problem of benefit fraud v benefit support. Obviously, Kate was the Saint and you can still catch her (and her assistance dog, Zara) on BBC iPlayer, using the following link:

Saints and Scroungers, featuring Still’s sufferer Kate.

or Saints and Scroungers

Inspiration for us all,

L

Edit: Just found this post, which I guess is related – Feeling Stuck in a Rut

Read Full Post »

Following on from yesterday’s retrospective post, I spent the night on the Short Stay Ward with a view to have a CT scan and a couple of other tests today.  Before I carry on, I would like to point out that I have no problem staying in hospital and I’m not one of these people that look for a reason to complain or be awkward.

I’ve mentioned here before that I often struggle in the mornings at the moment, ranging from needing help to sit myself up in bed, to waiting for my painkillers to work before I can function well enough to shower, dress and generally move about better.  This morning was one of those days that I woke up unable to really move thanks to pain and stiffness, not even to lift the blanket away – as a young person, this is difficult to admit and I would certainly never exaggerate or play on it in any way.

The breakfast lady woke me and put a bowl of cereal and a hot drink on the bedside table; I told her that I needed some help to sit up and eat and she said she’d let someone know.  Twenty minutes later, someone else came and took my uneaten breakfast away and placed my tablets on the table instead. Again, I tried to explain that I hadn’t eaten because I needed help to get myself up and would do to take my tablets too, she said she’d let someone know but later came back with a wash bowl and told me to have a wash as ‘it would make me feel better’. I tried to explain that I couldn’t get myself up AGAIN but she just huffed and went away before I had chance to finish.

I was starting to really hurt now, being stuck as I was in the same position.  Then half an hour or so later, two nurses came to change the bed and told me I’d have to get up. I tried to explain again that I would need some help sitting up; their response was to stand and stare then say ‘Just swing your legs round and sit yourself up’. Not very helpful but I kept calm and tried to explain that I couldn’t as I was in a lot of pain. ‘So why haven’t you taken your painkillers then?’ they asked me, quite sharp by this point. I couldn’t believe they had to ask. ‘Well it’s not like we can lift you up, you’re not a baby’. The other one spat.

I was just trying to explain that all I was asking was for a bit of a push/ support on my back to prop me up in a seated position, from which I’d eventually be able to unfurl my locked arms and legs, when the first nurse grabbed me by the (extremely painful) arms and started to drag me to the edge of the bed; because I ended up horizontal across it, the second nurse proceeded to grab my ankles and pull me by them too. I don’t know if they were expecting a miraculous recovery, for me to sit up and say ‘okay I give in, I can actually sit up I just wanted to make a fuss…’ but if it had carried on a few seconds more I’d have ended up on the floor.

Thankfully, at that point, a doctor appeared and asked them what was going on.  I just burst into tears and in all my life, in all the times I’ve spent in hospital, I have never cried. But then I have never been made to feel so humiliated either.  The doctor calmed me down and asked me what the problem was; as soon as I told him he gently gave me the right support to prop me up in bed so that I could take my painkillers and told the nurses that it was actually in my admission notes that I was having some mobility problems and might need some help.

As always, I was moving much better after a couple of hours and had to then listen to the two above nurses discussing how I’d had a ‘miraculous recovery’, at the end of my bed of all places! When I tried to explain to them the reality of living with Still’s Disease and flares, I was met with dirty looks and they promptly walked off, but I had to put up with petty, snide remarks for the remainder of their shift.

You can probably tell that this incident upset me but I’d been told that my CT Scan was booked for 2.45pm and that I could go home if it was clear, so I just kept my head down reading until that time, still thinking it best to get the scan done.  Sure enough, at 2.45pm I was taken down to the scanning room, only for them to tell me that I was supposed to have a green canula fitted to inject the contrast that would show up my blood vessels.  The ward knew this but nobody had even tried. The doctor there did try to insert one, but because of my bad veins she couldn’t manage and so I was sent back to the ward with the promise that someone would insert the canula there and take me back down before it closed at 5pm. Funnily enough, nobody did.

It became obvious to me that I wouldn’t be getting the scan until the next day and I couldn’t bear another morning like this one, so I made the decision to discharge myself against their advice. The ward matron was on duty by that point and wanted to know my reasons and so I told her about my experience.  She did apologise and said she had a friend with Still’s Disease; I hope that at some point she stands up for this friend and myself, by educating the two ignorant nurses in question.

Anyway, I have never been so relieved to be away from a hospital. What I have accounted here is my own main experiences but I also witnessed a lot of other mistakes and mistreatment of patients that I will be including in a formal complaint to the hospital.  Now, my doctors might think me clingy, but this had made me feel even more certain that I don’t want to be treated anywhere else but at my own hospital, with people that know my background; people I trust.

Oh, and I never did get the blood transfusion!

L

Read Full Post »

Older Posts »