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Monday 30 May 2016

1 Step Forward, 2 Steps Back

Wow I have not blogged in AGES! So there is a fair bit to update. My neurology bits all came back clear so I was referred to a rheumatologist. I had this last week and had lots more tests and things done, which all led back to my diagnosis of CFS/ME and fibromyalgia. I wasn't really expecting any different but she actually explained the illnesses more than anyone has before (for fibromyalgia, she didn't know a huge amount about ME). She explained that it is a problem with the pathways in the brain, so pain signals fire away when there is no physical reasons for the pain. She also said it affects the autonomic nervous system (which my friend Emma has been saying for MONTHS and no one ever confirmed it) and this is the reason for my fluctuating heart rate, stomach problems, temperature control and various other symptoms. This has put my mind at rest that they are 'normal' symptoms and not anything more sinister. However, she did discover something different. She asked me to lots of random things, like touch the floor, bend my fingers back, hold my arms up, stand etc. and discovered that most of my joints are hypermobile. This is a very common condition, though it rarely causes problems. It goes hand in hand with fibro and could be the reason for the worsening pain and weakness in my limbs. She said it is pure back luck that it is causing me so much pain and discomfort and even more bad luck with I ended up with all 3 conditions. She has made a referral for a pain management clinic however they only offer CBT (Cognitive Behavioural Therapy) where you talk about it. I don't see how talking about it will make it better? I manage just fine so Id be reluctant to go if I ever get an appointment.

I actually had been doing fairly well recently. Ive had a busy few weeks, I had 3 weekends in a row where I actually did something sociable. Then I drove Adam to the airport on the 1st of May as he was off to Africa for 7 weeks to do research. He's been gone 4 weeks now and I'm missing him lots. I've had to do everything for myself and it's been very hard. The last week or so I started really struggling, my pain started creeping back up, I had to sleep the weekends away just to be okay for work and I pretty much stopped eating altogether. I knew I was going home for half term week so I wasn't worried because I knew my mum would look after me once I got there.

I was counting down the days I and was very excited to go home, I made plans with lots of different friends, planned to see my nephew within 2 hours of being home and was set on having lots and lots of enjoyable rest time!



However, this did not go to plan. On Friday, last day of half term, I woke up with a bit of a scratchy throat, nothing unusual. I often wake up like this and then it goes by the time I get to work. It didn't but I didn't feel any more poorly than my usual ill self so I didn't think anything of it. Then I got a headache. Again, not unusual, I took some painkillers and carried on. I was just seeing out the children at the end of the day and had 1 child left when I sudden wave of sickness hit and I started seeing stars as if I was going to pass out. I took the child inside quickly and grabbed my bottle to go and get some cold water. On my way up, a couple of people asked what was wrong so I must have looked rough. The pain then hit me all over and I knew I was going to start crying which I REALLY didn't want to do at work. Everyone knows about my illness but they don't need to see me crying over it. It was absolutely unbearable so I quickly walked back to my classroom to drink my water and take some tramadol. I'd already taken codeine and it had done nothing. Then Rachel and Rachel came back in the room and I told them I dint feel well (and of course started crying) and that I was worried I wouldn't be able to drive. It's a 40 minute drive so a bit scary when you feel that ill. We went back upstairs so I could get more water and so that Rachel could get some cake (I turned this down which proved how ill I felt!!) and just lay in the staffroom. Someone else came in and we were talking about how poorly I felt and people were offering to take me home. I wanted them to but I knew I needed my car to be able to back to Essex the following day so I had to drive home myself. I waiting until the painkillers had kicked in and then drove back home. I got straight into bed at around 5pm and expected to feel a lot better in the morning. I could not have been more wrong.

On Saturday morning I woke up with the most swollen, painful throat I think I've ever had, my head was on fire, I was sweating but freezing and I could barely sit up/walk/do anything. My heart rate was at 140 laying down, when it's usually between 60-80, I couldn't tolerate any light and had to wear my sunglasses in the flat, even though all the curtains were closed and the lights were off. I ended up ringing the NHS helpline and they sent a taxi for me to get me to the emergency doctor at the hospital who quickly diagnosed a bad throat infection. He first looked and said my tonsils weren't that swollen, I was shocked and explained I had no tonsils, to which he looked again and said "well then your throat is VERY swollen", my glands were very inflamed and I had a temperature. He explained that with my health problems, it was going to be hard to fight the infection and that it would probably take longer than most people. He gave me some antibiotics and off I went. Obviously I was in no fit state to be driving home so my lovely mum and her fiancé drove all the way to Norwich, packed up my stuff and brought me back with them for the week. I slept the entire journey. I perked up a little by the evening and managed to eat some toast and stay up to watch Britain's Got Talent. I went to sleep after my last antibiotic at 11pm and barely slept. My throat and everything is so swollen that I can't breathe through my nose and it makes a horrible snoring/snorting noise if I do where the air is trying to get through so obviously this keeps waking me up every 15 minutes. I thought I'd either feel the same or slightly better by morning but again, I could not have been more wrong.

I woke up in AGONY. My throat killed, my head was so severe I just had to hold it and cry. I could barely open my eyes, I was burning up and sweating all over. My mum gave me all the painkillers I could take and they did nothing. I was genuinely terrified, surely a throat infection couldn't make me this ill? My mum rang the NHS helpline for me this time as I couldn't speak or anything. The lady said I had to try and walk to the bathroom, so I tried and failed. I made it about 10 steps before feeling like I was going to pass out. So I got back into bed and waited. I was crying, my mum was upset but she did amazing on the phone, explaining everything. They gave me another appointment at a different hospital and off we went. My mum had to support me while I walked just in case, I had to wear my sunglasses as the daylight hurt my head even more. Let's just say, I was not in a good way. The last 2 days are a blur if I'm honest, I just remember being in a lot of pain. The doctor was lovely, by now even I could feel that my glands were VERY swollen, my throat of course as well. I could feel it spreading to my ears, my chest and just generally all over my head. She looked at my antibiotics dose and said it was not enough. I had been prescribed a child's dose despite the fact I am 24 years old and quite obviously an adult size. I couldn't believe it, no wonder I'd got worse. He was the one who had said I wouldn't be able to fight the infection on my own, yet he gave me the dose for a child of about 9. This had allowed the infection to spread. She doubled the dose and I started the dose straight away.

I barely slept at all last night, BUT I am in less pain than I was yesterday, I've still needed ibuprofen, paracetamol, codeine and tramadol to keep the pain at a tolerable level but I can do more today. Yesterday I couldn't really sit up, I couldn't tolerate the TV, didn't really eat; I just lay in a dark room all day with my eyes closed, wishing it would go away. Today I've watched an episode of Silent Witness, had breakfast and had a bath (I'd been in the same clothes since Friday night and was starting to feel a bit grim). I still feel very very unwell, I can't stand up for long, talking is hard and I'm in a lot of pain everywhere but I can see that I'm on the mend. Once the infection is gone, I'm sure my normal symptoms will continue to flare up like they are now but I know how to deal with that.

I'm annoyed at the first doctor as if he'd prescribed the right dose to begin with, yesterday would have been completely different. I was terrified there was actually something very very wrong with me and all because of his mistake.

I'm also disappointed that my half term week is not the restful, catching up with people week I had intended on having but my brother is coming over tomorrow with his girlfriend and my nephew so that will cheer me up a bit. I'm frustrated that I had been doing quite well the last few weeks and I'm 99% sure this will set me back again for a good few weeks but I'll take my time with things and build back up slowly. My mum has been amazing and I feel guilty as I don't think she expected to be spending her week off looking after me like this either!

Thank you for reading, I know it's been a long one and hopefully my next post will be a more positive one xxx


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