Today is possibly the worst I have ever ever felt since my diagnosis. I woke up feeling rough but I had planned to go into work to sort out the children's books before we go back. I got up around 9, forced myself to get dressed, have some breakfast and did my make up. I then went to stand up and felt HORRENDOUS. I couldn't understand what was wrong and lay down feeling like I was going to be sick. I went to the toilet but nothing happened so I went and lay down again. I was stressing because I needed to go to work but it was looking very unlikely. I went back to the toilet and threw up. A lot. My make up was all down my face and I was shaking and weak, in absolute agony and it seemed pretty obvious I was not going in. I changed into my Hollister joggers, took my make up off and got back into bed. I then very very quickly fell into a deep sleep for another 2 hours. I woke up feeling less sick, but completely and utterly exhausted and still very weak. I wasn't able to get up for another hour and it was hard. I was absolutely starving after my body got rid of everything I had eaten for the whole of the week it seemed! The only thing I fancied was the Red Velvet cake I bought Adam for his birthday so I cut myself a big slice. Luckily it stayed down. I was still in agony so I took some more painkillers, dragged myself onto the sofa and brought all the things I would need for the day. Laptop, phone, book, blanket, knitting, TENS machine and pillows. I have not moved since.
Photo from yesterday, but I'm spending today the exact same!
It was hard putting my TENS machine on myself and used a lot of energy trying but it is helping so much! My back was spasming which was horrific and that has stopped now. I have my wrist supports on as my arms and wrists were so painful. I'm feeling loads better than I was but still not in a good way.
I had the best evening yesterday at PrimEVIL, an event in Norwich with lots of scare mazes, actors etc. it was so much fun! I spoke to a friend earlier in the day and she told me there was a lot of queuing involved which worried me a bit. I sent an email to find out if there was anything they could offer to make it a bit easier for me and didn't get a reply. I was having a fairly bad pain day which wasn't ideal but we went along and asked them when we got there if there was a way we would be able to not have to queue. Unfortunately there was not. The first queue was about 30 minutes-ish, which went quite quick and the maze was brilliant so I didn't mind the wait. The second one was over an hour and I started to feel a bit rubbish and the maze was the worst one! We then went on the zipwire which was amazing, you get dropped as if you are being hung! Wasn't good for my poor little legs but was worth it. Then it was a zombie maze which Adam was looking forward to most, I thought it was horrific!! I clung to him the whole time and was hurting him from how much I was clinging... Last we went on a completely pitch black maze where you have to feel your way through, I left that job to Adam while I clung on for dear life. I also had a random girl clinging to me! It was hilarious. Luckily we didn't have to queue at all for the last two. I was struggling by this point. High emotions and things make my symptoms worse so obviously being scared was going to affect my body more. It was so much fun but we didn't make it to the last maze. I had completely had enough of being on my feet - which was probably the longest I've been on them in months! I was in agony and completely exhausted and just needed to rest. We went home and straight to bed.
Me and Adam at PrimEVIL!
I've had a lovely week off, met up with friends, my mum and her fiancé came up on Saturday, it was Adam's birthday on Tuesday which was lovely and we went out for dinner with his family. I have also just enjoyed chilling and resting, spending time reading has been great as I never get the chance to do things like that.
I had my blood tested on Tuesday which came back clear, as always. Further confirming my diagnosis. I went to the doctor's on Thursday as well to discuss a few things. I asked if I could have capsules rather than tablets as I can't always pop the tablets out the packet because my arms are too weak. I was a bit annoyed because the doctor said she "wasn't sure if I could have the capsules, because I take so many and they are not the most cost-effective", but then changed them straight away. I am already noticing a huge difference. Ive had no trouble getting them out the packet and I am no longer choking on them which is a bonus. I then went to the dentist where I was told my teeth are beautiful but have a couple of issues with my gums, I've got a new toothbrush and they should sort themselves out!
The HUGE prescription I had to collect. Thank god for pre-paid prescription cards!!
Lastly, there has been outrage amongst CFS/ME sufferers this week after the Telegraph posted an article claiming that it can be cured by a positive mindset and exercise. I am technically 'mildly' affected most days and 'moderate' on my bad days. Even on my good days, I am not able to exercise as the article suggested. I have an extremely positive mindset, yes I rant at times, but I am positive and I still suffer every single day. I tried Graded Exercise Therapy and it did not work or help in the slightest. It can actually make people much more ill, and my active day yesterday proved this. I have been so so ill today and I know full well if I did any kind of exercise I would always suffer like this. So how is that going to cure me? Those who are severely affected are completely bed bound and unable to brush their own teeth, yet exercise is the cure? It's a ridiculous article and has upset many people. It implied that the condition is 'all in the head' which it quite obviously is not.
I am looking forward to getting back to work and back into a routine as I always feel a bit worse during time off as I'm not in my routine.
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