Not with a bang, but with a whimper. Part 2.
This is part 2, to read part 1 click here.
There was no rest bite. By the middle of December we were sleeping – or rather I was sleeping in ten to twenty minute bursts if i was lucky. The Gent got a bit more sleep, but only because he ended up tuning my screams, moans, and mumbling out. I was extremely sleep deprived, and I’ve never felt that way before. I was delirious. I didn’t know what day was, the time, or anything really – only that I existed to hurt.
We kept going back to doctors, time and time again. One told me it was a skin infection put me on antibiotics, another said I should go see a psychotherapist, and only one – a private doctor, listen to me. He admitted that he didn’t know, that he’d never had a case like mine before. And I honestly can’t tell you how happy that made me. It sounds odd to be happy, but everyone was trying to diagnose me in their own way, because they didn’t want to be wrong. I can understand that. But, what they should’ve done was listen and admit they didn’t know, because they didn’t. Had I actually had a skin infection, by that point I probably would’ve already been in hospital with necrotising fasciitis (I recommend not Googling that one). The doctor that prescribed me antibiotics didn’t lesson – to be fair I’m not sure she liked me. I was the one that came coming back time and time again in the early days, because something was wrong, and funnily enough I was right. My pain wasn’t treated early, so by the end of December it was a unmanaged, and unfathomable.
I was existing. I wasn’t living, I wasn’t enjoying life, and I wasn’t me. Back then I thought I was me, or at least there was still some of me, but that’s hindsight for you. I wasn’t me. December passed in a blur, and then came Christmas Day. I so desperately wanted Christmas Day to be good, and it was for an hour. I then spent a few hours screaming. I had another hour or two where things are mostly okay, we had food we watched movies, but it is nothing like it was before – all those past Christmas days. This one was shrouded it a dark blanket.
I’ve always loved Christmas, but to be honest it felt like Christmas 2017 never happened – the same with New Year. In fact New Year’s Eve I remember quite well mostly because it’s fresher in my mind, but also because I had to ask the Gent to come home every single time I needed to use the commode, that’s the reality of chronic illness. I wasn’t weight-bearing, and even when trying to move the pain was immense. He had to lift me onto the commode. You don’t forget things like that.
Throughout December and the first week in January, I had ice packs 24/7, two fans, windows open, and no heating on. For those that live in Britain, you know just how bad it was this past winter. There were a number of times, I was outside going to appointments in flip-flops, hastily cut-off leggings – I definitely don’t have a career in fashion, and cold packs, whilst at the same time bundled up with a hot water bottle on my back. It was quite a sight to see, I know because so many people stared.
I’m going to fast forward, because quite honestly PMS, plus talking about this a week after a disability assessment means tears. Lots of them. I’m also going to say this piece won’t be as heavily proofed, because this is a rather raw piece.
On the 8th January, I gave myself frostbite in my right foot. I chilled it so much it went hard and waxy. Of course everyone told me that I hadn’t, they thought I just gotten into little cold. That wasn’t the case. The Gent heated my foot gently after it happened, as I I think I went into shock. He tells me he was also scared, but he saw me panicking so he took charge – he’s a good egg. The next day I woke up, and my right foot had started to blister. On top of everything else it was too much. I spent the day in and out of a half awake daze, listening to Disney songs, audiobooks, and anything to keep my mind distracted. I had reached the limit of my upper limit. By the time the Gent got home I was delirious, I had been crying since two, and screaming since I woke up.
So, on the 9th January, the ambulance was called for the first time. When I got seen in A&E, it was by Dr that essentially told me I was looking for drugs. He gave me my normal medication – even though at that point I wasn’t taking tramadol as it was making my face twitch, and sent me home. He did wrap and cream the blister, but he treated me with utter disdain. I was delirious, and he told me I couldn’t possibly hurt everywhere. I have fibromyalgia, I can hurt everywhere. Out of all the doctors I’ve seen, he was the worst. He poked prodded without any care, and even though the heat made everything worse, he squeezed and kept his hand on my feet for longer than necessary. Everyone else I saw said I should have been admitted that night.
I spent the next few days sleeping downstairs, still streaming, still crying, and still needing help to use the commode. The doctors didn’t do anything, well they technically did -they just referred me to a dermatologist. I found out later it was just for a ‘rash’.
Let me tell you something, it wasn’t just a rash.
It was heat that never went away, swelling that made my bones feel like they were being crushed, persistent cramp in both feet, searing pain, such intense burning pain with multiple characteristics – fire and chemical, shooting pain, electric pain, and more. It wasn’t just a rash.
On the Sunday, I woke up at 4 AM screening. At 7 AM an ambulance was called, and an hour and a half past where there was a lot of discussion as to what to do with me. I wasn’t technically accident and emergency, but I definitely couldn’t carry on the way was. By this point my blister took up most of my foot, was about a good inch and a half/2 inches in size, and tipped the scales of the pain.
A tank and a half of gas and air later we went to A&E. by the time we got there I had gone non-verbal. I reached that point why just couldn’t talk. They were supposed to get more gas and air, but the tank had run empty, and no one was qualified to change it – just my luck. So, I had nothing. By this point my previous painkillers had worn off, and I was so tired as I still hadn’t been sleeping well. Fortunately, this time the A&E visit went much more smoothly. I had a lovely nurse who matched her pocket watch to her glasses, another nurse who lanced and dressed my blister with so much care, and a doctor who actually listened. He decided that I should be seen and assessed by more doctors, and they decided I should be admitted.
I spent 12 days in hospital. I hated every single one of them, but I came out able to live again. Sounds like a mushy statement, I know. It’s true though, the cocktail of medications they put me on allowed me to think, sleep, interact with my partner, and gain a little bit of me back.
The past year has been heart-wrenching, and the hardest thing I’ve ever had to deal with. I thought a new pain before, but I didn’t. Not really. I have my mind back – well, some of it. I have a relationship again, my sex drive has come back, and I have learnt a lot of lessons.
It took one year where the pain got gradually got worse, and worse until I gave myself frostbite for the doctors to listen to me, to take me seriously, and to treat me. I have mental scars from that year, I hate the house I live in now because it just reminds me of time where I was incapable, and still am as my house is pretty darn inaccessible.
Things are better, yes, but only because I’m medicated. If I take one of the medications away, the pain – which hasn’t entirely gone, comes back with a vengeance. I’m not better, I’m just medicated. I’m also undiagnosed, and medically complicated. Some doctors don’t want to figure it out, they send me away to refer me back to my GP, some say it’s a erythromyalgia, some say it’s a complex regional pain syndrome (CRPS).
Bottom line, no one knows.
My hospital stay deserves a post of its own, so there will be a final part to this series.