A very poorly but very fun half term!

Well what a lovely week it's been! I'm gutted it's almost over but I have two friends coming up to stay with us tomorrow to celebrate Halloween and Adam's birthday!

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!!

It has been an exhausting week but so much fun. I think I crashed today because I accidentally used all my 'spoons' for today, yesterday. I had none left for today and pushed myself to get dressed and then crashed *see my blog post 'The Spoon Theory' for more info on that*. I am still learning my limits and obviously have my awful days like today.

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.

First half term as a qualified teacher complete!

Hi everyone, I haven't blogged in AGES! Partly due to having no time but also being completely exhausted in the evenings and weekends. I just checked and I haven't blogged since the 7th October so I've got a fair bit to write about - I'm pretty tired though so I'll try and keep it short.

Firstly, it's half term!! That is why I finally have the time to sit and write. It's been the most stressful, yet enjoyable 7 weeks I could have imagined. I have loved every minute of my job and I look forward to going in every day. I can't deny that it's hard, the exhaustion is horrific and the pain has not been great at the moment. I think my new tablets are helping but I'm useless and often forget to take the second dose of the day. Unfortunately I haven't been able to come off the codeine yet which I was hoping to. I had a couple of days where I didn't take it but I'm back to my normal dose again which is a bit rubbish.

I went out on Wednesday after work to say goodbye to our phase leader who is starting a new job. I was apprehensive about going as it would be a much later night that I am used to, and sitting in a chair for longer than usual. All started off well, we went to the Greyhound races which was fun, we had a lovely meal and then the pain decided to hit me full strength. I didn't want to complain so I took 3 painkillers in the hope it would fade. It didn't. I stayed as long as I could but at 8:40, I had to give in and call it a night. I hate leaving early and always worry that people think I'm just not making the effort. I was feeling pretty annoyed at myself on the drive home and realised that I would not be able to go for the meal everyone at work was planning for Friday (last night). I had been really looking forward to it but after how I felt sitting in a chair for 2 hours, I knew there was no way I could cope with dinner and drinks, let alone the late night. Therefore, I celebrated the end of the half term by myself, with a 2 hour nap, a pizza and an 8:15 bed time. Tragic yes, but it was exactly what I needed. Adam got in from work around 11, I was in such a deep sleep I barely remember him being there and then I was woken up at 3:30 by excruciating stomach pains again. I cannot even describe how painful it is and anyone who thinks that IBS is 'just a tummy ache' can p*ss off. I went to the toilet and sat there shaking and sweating, trying to work out whether I needed the toilet or if I was going to be sick. Nothing happened. I went into the bedroom and woke Adam up who was amazing, he got straight up and filled my hot water bottle. I lay there for 2 hours, in absolute agony, kept popping to the toilet every 10 minutes. I finally fell back to sleep about 6 when it settled. Not ideal when I was looking forward to a long sleep to recover from the exhausting weeks I've had.

On a brighter note, my mum is on her way to visit!! I'm so excited, haven't seen her in a few weeks and I can't wait. I've spent the morning napping, cleaning and resting so we can have a meal and drinks with her fiancé and Adam.

I want to talk about Adam on here as well and how amazing he is. I know he didn't expect when we got together that he would spend his evenings alone while I sleep, weekends doing the same thing - limited by my stupid body. He rarely complains. Yes he has his moments where it upsets him too, because there are so many things we would love to do together but the only time that is possible is holidays, like this week. We have some lovely plans for this week and I can't wait. That's the awful thing about an invisible illness, not only does it affect me, it affects the people closest to me too. Especially Adam. I've been experiencing a lot of guilt recently and I get upset with myself when I can't stick to what I've said. This week we've tried to watch 2 films, both had to be in 2 parts just so I could stay awake/concentrate on what was going on. It's hard for people without the illness to understand the struggle with simple tasks like that.

I'm feeling loads better today than I have for the past week so I'm hoping the meal will be lovely. I know my mum and everyone will understand if I don't feel well and we have other options in case.

We have a lot planned this week. I need to go into work to sort out all the children's books etc, it's Adam's birthday on Tuesday and we're going out for dinner with his family, we are going to a Halloween event on Thursday (I think) and then it's Adam's birthday night out on Saturday and I have two friends coming up to stay. Plenty to keep me busy and look forward to but also a huge potential for a complete crash health wise. I'll stay positive and hope for the best!

Another day, another medication.

Been having a really rubbish week health wise, the cold knocked me back so bad. I seem to have finally shaken it off but since Sunday, my pain has soared and nothing helps. The codeine stopped working, ibuprofen doesn't help, heat from my hot water bottle didn't help so I've been feeling a bit gutted. I've been pushing through as always, shed a couple of tears but carried on fighting. I was excited to have a lie in this morning as I was on an NQT course in Norwich, which meant I got an extra 2 hours in bed! I thought I would wake up feeling great but obviously I didn't. I felt as if I hadn't slept, was achy and sore and my hands were really playing up. I was worried about writing but luckily there wasn't anything major I needed to write down at the course. When I arrived, I saw two people I did my degree with and it was lovely to have a catch up, I wasn't expecting to know anyone so it was a nice surprise.

I was in pain but was feeling okay-ish and thought the day would fly past. After about an hour, my pain was getting worse, I text Adam and told him how rubbish I was feeling but I was determined to carry on and make it til the end of the course at 4pm. However, it kept building up all over my body so I rang the doctor and tried to get an appointment for the afternoon. Even just to discuss the condition further again and take a weight off my shoulders. The receptionist was very rude, I'm sure it must be part of the job description that they have to offend and upset people at least once a day. She told me bluntly that there were no appointments and they could fit me in Saturday. I explained the situation and told her how much pain I was in and no I couldn't wait til Saturday, finally she seemed a bit sympathetic and told me the doctor would phone me. After another two hours I was in more pain than ever and still hadn't heard anything so I rang again. Another receptionist but just as rude. She told me I was on the list and the doctor would get back to me as soon as he could. I felt like a time waster and that I was over-reacting which is hard when you're in absolute agony but have no way of proving it. From the outside I look so normal and happy and on the inside I feel like someone is hitting my bones with a hammer, twisting my muscles and burning my nerves.

Eventually I'd had enough and left the course 2 hours early. I felt completely defeated and lost, Luckily the doctor finally rang me on the way home, he is one of the doctors who specialises in ME/CFS so chatted to me about how I was feeling and whether I'd done anything different recently. He asked me to describe my pain and was really sympathetic and prescribed gabapentin. I was happy that he took me seriously but gutted that it's yet another medicine I have to include into my daily routine. With these, I am now taking up to 13/15 tablets a day.

New tablets

Gabapentin is a drug used for nerve pain and he said most of his patients found it very helpful, so I am hopeful that it will help me return to a more stable level and keep the pain more under control. The list of side effects is long and a bit worrying but we will see how that goes. I'm hoping the benefits outweigh the side effects. I have no idea what has caused this severe pain flare but I am hoping it will not last long. I am sad that I have to rely so heavily on medication just to function but it's my only choice at the moment.

I was miserable on my way home from the pharmacy and could feel my mood dropping by the second. I got home and there was no where to park, I tried to move the car and got in someones way who started beeping at me and I just broke down. I'd been bottling it up all day about how rubbish I was feeling and trying to put on a happy face but that just finished me off. I parked the car, went inside and had a good cry to Adam and felt a little better after that. All I needed was a hug and a lie down. I have things to be doing tonight for work tomorrow but I'm absolutely exhausted - from the rubbish day I've had and the new tablets but I'm as determined as ever to make it to work tomorrow and have a good day. We will see.

Now I've had a cry, I feel a bit better emotionally and back to my usual fighting self. I will get through this flare and be back to my usual happy self soon. I'm exhausted and haven't proof read this post like I usually do so I apologise if some bits don't make sense. Feeling a bit all over the place, but got my indian on it's way and the Bake Off final is tonight!

Hope you all have a lovely evening xxx