This has been 2 of the hardest weeks I have had in a long time.
I am in even more pain than usual, I am emotionally and physically tired yet there isn’t time for me to stop and recover. It has been a hard couple of weeks and my health is the worst it’s been since last June.
My dog having 2 major operations on his leg. 1 of which went wrong and his artery was cut by a bone saw and he nearly died. He then spent 3 nights in the vets and was touch and go, and last friday he had the second operation to correct what they were unable to finish in the first op. This has obviously caused me a lot of stress, but also he has been in need of a lot of care and has been very needy and demanding my attention. I do not mind this at all, because I’m his mum and this is what mothers do. Some of you are probably laughing because I call myself his mum. But he and Brody (my other dog) are my fur babies. And the way I feel about them is as strong as anyone feels about their human babies. I’m sure of it.
But anyway, because he is such a mummys boy, it has meant that for the first couple of nights that he was home after the ops, our living room floor become my home.
It is where I sat throughout my days and where I slept at night. I had a duvet to lie on, a duvet to cover me, and a couple of my pillows from the bed.
Camping on the living room floor for a good few days at a time isn’t good for a normal healthy person, so for me, it comes close to hellish.
I couldn’t sit on the sofa because as I said, Sammy is a mummys boy and he was very needy. When we first got him home (both times) he was heavily medicated still so he was very spaced out, and all he would do was snuggle his head in to my chest and make a high pitched squeel noise. A cross between a cry and a noise Brody makes when she is happy. He wanted noone else and if they tried to take over from me whilst I went to the loo or anything, they just wouldn’t do. He would attempt to follow me or he would get louder.
He had to be touching me in some form. If he was asleep on the floor one part of his bosy had to be next to mine.
On Saturday night he really stepped it up a notch. After the second operation he decided that not only was cuddles and touching me enough confort, he needed to be rubbed and stroked, but not just anywhere. He needed to have his favourite thing in the world. He needed, his ears rubbed. Again I know how stupid this sounds, but Sammy’s first night home this weekend I got ZERO hours sleep, because any time I stopped rubbing his ears, because I thought he was asleep or because I had falled asleep, he would paw me… until I continued with what I was doing.
But why was this weekend harder than the time he came home before? Well because this time I am facing the up hill struggle of trying to recover from the pain and damage I caused myself by sitting and sleeping on the floor for days, whilst doing it all over again.
The Wednesday of last week I spent in the hospital again. For a couple of days before, I had been getting really exreme pains where my adhesions are in my abdomen. It felt like my stomach and intestines were bruised, and that I was being stabbed, AND that I could feel the inside of my body tearing. ALL AT THE SAME TIME.
From Sunday night until Tuesday night when I was woken up at 1am having just managed to drift off (‘sods law’ says the borderline insomniac) by a searing pain which made me scream, I had managed to do my best “I’m Fine” Like most chronically ill people I have mastered this over all my time.
But as 4am rolled round I wasn’t saying “I’m fine anymore” I wasn’t taking my oral morphine on the sly I was drinking it like it was water. I had an appointment for the drs booked for Wednesday morning anyway (about the only lucky thing to happen to me in a while that) so all I had to do was wait.
The morning roled around and luckily Harry was on lates so he was able to drop me in to town before my appointment. Thank God he did, or I think I might have been found dead on the bus or the train.
I had a few errands to run before my appointment, but with the pain intensifying I was finding it harder to just power through.
I had reached the point again where as I moved I would sweat from the pain. I couldn’t walk far at all without having to stop and sit or rest for a bit. I don’t know whether it was by shere determination of stupidity I did however power through, I did all my errands, but by this time, a concerned lady stopped me in the high street to ask if I was ok.
I smiled sweetly and said “Honestly, yes thank you, I’m just feeling under the weather. I’m off to the drs now actually” whilst inside my head I was screaming “I THINK I’VE BEEN STABBED. PLEASE HELP ME!” I staggered away, and as I stood a few hundred metres from my drs I still had a good 30 minutes before my appointment. “Thank FUCK” I thought as I saw I had time, because I knew I was going to need it just to get that far. Luckily there was a cafe between me and the drs. I stepped in, again a few concerned people looked at me, as I was sweating and breathing heavily in pain. I bought a drink and sank painfully in to a chair. I sat there and tried to recover for nearly 20 minutes, before I pushed on to the drs.
Once there and signed in, and then I had to climb the stairs. The surgery has a lift, but I felt embarrassed – I thought that people would judge me for being lazy perhaps if I took the lift, so I took the stairs. There are 14 steps in total. I know because every single one was like climbing Everest.
I reached the top, pulled the door open, sweating like I’d been jogging for an hour. Typically the waiting room was busy but luckily there was 1 seat. It was mine, I took out my book and I tried to read. “Reading will distract you from the pain Emma” I told myself, as I tried not to let out a sound everytime the stabbing pain got worse in my abdomen. But I could I was sweating still, I could feel the beads on my forehead and the back of my neck. I could also tell that people were noticing that I wasn’t right and they were looking at me like I was suffering from a tropical disease and they were all going to die. I gave up on the book because the words on the page just blurred and I couldn’t tell you what Hercule Poirot or his Little Grey Cells were up to. I put the book back in my handbag, which I started to hug. Granted this probably didn’t help with the fact that noone thought I was normal.
I sat there for what seemed like a forever, seering pain cutting through my body, I looked at the clock, it had been forever, I’d beeen sat there for 45 minutes. The drs was running late. I don’t know why I was surprised. Finally, I don’t know how much later, I was called in to see my dr. Instantly she said “Emma, what’s wrong, you don’t look well”
I was only meant to be there for a review of my new medication. But as I started telling her about how I felt and how much worse it had gotten in a few days, she demanded that I lay on the bed so she could examine me.
My belly was hot to touch and was swollen again. Anywhere she touched was like a millions pins going in to me, or a red hot poker being forced through my body, in places it was worse than ever and I could barely allow her to touch me.
She noticed how much I was sweating, and she then told me she was going to check my pulse. At first she attempted to count herself, she soon gave up muttering “I can’t keep up” She got the machine which goes on your finger. Before I really knew what was happening, she was gasping and reaching for the phone and other instruments.
Turned out, my heart rate was 130BPM. My blood pressure was high, very high for me, I am usually classed as a very low blood pressure. But my temperature was fine.
Suddenly I’m on the phone to my mother, telling her the dr is sending me to the hospital. She tells me to tell the dr not to worry with the ambulance. She was straight out of work and down to the drs. She picked me up, and we went over to the hospital. 4 hours in SAU and I was sent home. I was told that even though my heart rate was still that high and my blood pressure was high, and the pain was still out of control, due to my blood tests etc being normal, there isn’t an accute factor… as a chronic condition they couldn’t admit me and I needed to go home and rest, and to speak to my dr about being referred to see my surgeon again, or… to go to another hosptial and ask for a second opinion.
He examined me, and we spoke about what had happened and how I was on a day to day basis, my symptoms etc. This was the first time, possibly ever, in that hospital where I have felt listened too and like the dr had some actual concern for me.
We talked about my surgeon disagnosing me with adhesions, but then, because of the fact that it was that hospital that nearly killed me, changed his mind and diagnosed me with IBS and said he wouldn’t see me again. (This is why my GP is asking for a second opinion)
The dr I saw at the hospital this time was enraged. He expressed his disgust that I had been left in such a state, to fend for myself with a bullshit diagnosis.
He made me tell him all my symptoms and I allowed him to feel around my abdomen regardless of the pain.
He said and I quote “What I am about to say is completely off the record ok? I shouldn’t be saying any of this as they are my bosses and I could get in to a lot of trouble… You have adhesions, and you need to fight your diagnosis that Campbell Smith has gven you. You have adhesions and possibly something else going on in there. I’ve seen your notes too, and you are being fobbed off. A surgeon messed up taking your appendix out and now they are passing you from pillar to post because noone wants to take you on or cut you open again because it will look like they were the one’s who messed up. So my advice, either you go to CS and you tell him to take another look or go in and treat the adhesions like he orginally said… or, and this is the best option and the one I think you should take… Go to another hospital. You may have to travel more and have all the testing again, but you will get the right treatment there. I wish I could help, I wish there was something I could do today to help you, but I physically can’t. There’s no grounds to admit you on because your notes and previous tests from different scans and departments show nothing and you don’t have an appendix, so there’s nothing I can get you in on. All there is is your heart rate and pain but it’s chronic. I am so sorry, and I disgusted that you have been left to deal with the mess that they have left your body in. You shouldn’t be having to live like this or in this much pain. I can’t even prescribe you anything stronger because I’m not permitted to give you anything more than you already have…”
He went on to tell me how serious many of my symptoms are, and he went on and told me what I need to tell my GP to do next. We already have a referral to another hospital in motion but I’ve been waiting months for a letter that hasn’t come. So this dr on Wednesday told me: Get sent to the pain clinic, and demand to be referred to the private hospital. They take NHS patients there too if I can’t afford it, but really I shouldn’t have to pay to be fixed, when there wasn’t anything wrong with my appendix in the first place. They took it out just because they could… but anyway.
He’s told me I need to start kicking up a fuss. I can’t spend the trest of my life like this.
So anyway, I was sent home, and told to rest. I am awful at being a patient. I get filled with guilt if I stay in bed, or don’t do all of the chores around the house… But since I’ve been home, and having to look after Sammy again, I’ve gotten even worse.
The Oral Morphine might as well be Calpol and I can see my heart beating in my chest as I type.
My mum wanted to take me to hospital again today, maybe try another one, but I can’t go. I can’t leave Sammy alone for a while yet, so I can’t risk being admitted because noone is around to look after him. So I am waiting it out. I’m being told I’m stupid, maybe I am. But I think I’ll just be told the same stuff, and sent home after wasting more hours. But also because I now have a hatred of hospitals. I never used to mind them, but after last year, they scare me. I’m worried that if I go back they’ll cut me open and I’ll nearly die again.
But here I am, typing a 2 and a half thousand word post, that noone will read, because I can’t sleep due to the pain, but also because I hope it’ll take my mind off it… It’s failing and it’s getting worse. But I won’t let it win.