A fun-filled, pain-filled Christmas

I hope everyone reading this had a lovely Christmas!! I really did, it was so chilled and I'm still enjoying having time off work. I stayed in bed more or less flat out for the first few days of the holidays. I really needed a good chance to rest and let my body catch up and recover from how much I've been pushing it recently. It did me good and I had a really good couple of days. I managed to get all my Christmas shopping done using minimal amounts of energy and was enjoying catching up on some knitting again and I installed the sims back onto my laptop (which obviously I had to play for about 8 hours straight). My resting was going really well until Wednesday. I woke up already feeling groggy and not my best, had some eggs for breakfast and about half an hour later I started throwing up and couldn't move from the bathroom because I was gagging and retching and just feeling awful. It drained every ounce of energy I had and I felt terrible. I was home alone and a bit worried because I was so poorly and I knew I couldn't carry on like that, my body was in excruciating pain due to the exertion of being sick and two doses of tramadol later I decided enough was enough. I dragged myself down to the pharmacy and asked for help. No luck. Because of my health problems I was told I needed prescription strength meds to stop me being sick so I had to book an emergency appointment. It was with a different doctor, who of course was clueless about my condition. After a long time of trying to explain that I was vomiting a lot and my body was not able to cope with it. Eventually he gave me the prescription that the pharmacist had suggested in the first place and I went and picked it up. Within the hour, my sickness stopped and I was sat on the sofa eating a chocolate snowman. It was a miracle! Nausea is common in my illness anyway but I'm rarely actually sick from it.

The next day I was very sore from the stress my poor body had been through but back to a normal level. Luckily as it was Christmas Eve! Adam got home from work and we popped into town before coming home and making a chocolate house. Then we went to his mum's for the evening. We came home and got a good night's sleep ready for the festivities the next day. Adam was working Christmas Day so I actually spent the morning by myself. If you'd told me two years ago I'd spend Christmas morning alone I'd have been devastated but it was lovely to be able to relax and chill by myself for the morning so that I could really enjoy the afternoon and evening. It sounds strange but socialising is completely exhausting. I find it quite difficult at times so it was important for me to get in as much rest as I could.

Our chocolate house.

We opened our presents before we went to Adam's mum's house again and I was really pleased with the day trip to London that has been planned for February! On Boxing Day we drove down to Essex and have been here since. We are staying here until the 2nd January as we are going to see the fireworks in London for New Year! I'm sure I'll suffer horrific payback afterwards but I'm looking forward to it.

Boxing Day.

I was feeling pretty exhausted and in a bit of pain when I woke up on Sunday (27th) but we got up, went downstairs and made some salmon and eggs on toast. It was so yummy but within half an hour again, I felt AWFUL. I threw up a couple of times again and it wiped me out completely. This is the third time this has happened now within half an hour of eating eggs so we have had to assume that at the moment, I can't eat eggs. It happened when I first got sick with wheat and dairy so it's not exactly a huge shock and I'm hoping that if I steer clear then I won't have any more of these horrific days.

We have had a lovely few days, went sale shopping yesterday which has set me back slightly but it was nice. We all got some nice bits but shopping really isn't for me anymore! I'm in a bit more pain again today and completely exhausted. I feel like I've got a bit of a cold coming on as well which isn't ideal and is affecting my sleep.

Today, my mum's friend sent her a link advertising 'Fibrolief'. It's a herbal product with many different natural ingredients that have been proven to help with chronic fatigue and fibromyalgia. I looked into it and found that it's only available in America but a lot of the ingredients are ones available in Holland and Barrett. After looking into all the different products, we took a trip down there and have come out with a lot of them to try. Anything is worth a try and I'm running out of ideas. I'm still waiting to hear back about physiotherapy and whether I need to see a rheumatologist and the pain isn't getting any better so I'm willing to try anything. Especially herbal things as they surely can't do any harm right!? They were quite expensive but if they make me feel even slightly better than it is worth every penny. I've forgotten what it's like to feel healthy and normal so I want to try everything I can to get back to that.

All my purchases from Holland and Barrett!

 I'm feeling pretty rubbish today and need lots more rest to get ready for New Year. I hope everyone has a good one whatever you do!! xxxx

IT'S CHRISTMAS

Afternoon all! I was up very early after sleeping for nearly 15 hours last night. I've not been feeling great this week in the build up to the end of term and I took the opportunity of finishing early at 3:15 and Adam going out for his work Christmas meal to go to bed at 5:30 - tragic I know but I needed it. Even though it was a chilled week and we've been doing lots of fun Christmassy activities, when you're feeling like death, even sitting making Christmas cards with a bunch of 5 year olds can drain the life out of you. My body is in need of a good rest, I've been in a lot of pain the last few days, particularly in my arms, wrists and hands which has been hard, I try and stay away from the tramadol but I have needed them twice this week. They really do help with the pain but make me feel pretty spaced out so it's weighing up the options!

I went for a meal with the rest of the staff in our phase on Thursday evening which was lovely. I felt horrific but I pushed through and had the meal. Most of the team went bowling afterwards but that was out of the question. My hands felt like claws, they were so stiff and painful and all I needed was to cuddle up in bed. I was home by 9:15 and in bed by 9:30 so I was okay. It was a lovely evening but I get so exhausted that even having conversations is draining but it was lovely to spend time outside work with people and I enjoy just listening to people talk which isn't as tiring.

Fatigue-wise, I've been feeling slightly more energetic this last week, I'm still beyond exhausted and going to bed early but have felt a little more human. My headaches have been noticeably better since I got my glasses which is good and makes me think I have been straining my eyes with driving a long way to and from work every day. I woke up with an awful awful awful headache this morning where I could barely open my eyes but I think that was just from sleeping a bit too long and not having dinner or anything. I feel a bit better now but am starting to feel ready for a nap.

Pain-wise, I've not been great. As I said before, my arms, hands and wrists are really playing up which is frustrating as I can't even rest them properly. My hands and fingers are very stiff and painful.  I'm still feeling very weak but I have two weeks now to get a good rest in. I'm so excited to relax, catch up on TV, maybe even do some knitting if my hands loosen up a bit as I haven't done any in ages. Right now I'm making my way through the many boxes of chocolates the children in my class bought me, drinking lots of tea and watching Fifty Shades of Grey - with lots of breaks of course because my brain can't focus properly on films.

I even started my Christmas shopping today!! I bought presents for 3 people and only have a couple more things to get. I want to go into town but it's impossible to park and walking there is out of the question so I'll have to find a way to get to the shop I need. Christmas will be different this year as it's the first time I'm not spending it with my mum but we are going there for Boxing Day and having another Christmas Day then so at least now I get two days of celebrations.

It's been a good week at work, I passed my first NQT assessment with good comments which I was really pleased with and we have been making lots of Christmassy things, watching films and having parties - I truly have the best job in the world.

Over the holidays, I plan on getting as much rest as possible and meeting up with my lovely friends who live all over the place. I am determined to switch off from work and really enjoy the break. I have a doctors appointment to get my MRI results. I've been told over the phone that the results were 'satisfactory' and that I need to discuss with the doctor, I'm not really sure what this means. I also have an appointment with Occupational Health in January to discuss how I'm getting on at work and see if there is anything that can help me and to make things a little bit easier.

Hope everyone is having a lovely weekend and a lovely break if you have two weeks off too!! xx

My yummy Christmassy snack 

Christmas is coming!

Evening all! I can't believe how long its been since I blogged. I've been so busy with work and everything and it just slipped my mind.

Things have been good! As good as they can be. I'm still absolutely loving my job, couldn't be happier with how that's going. We are finally almost there with buying furniture for our flat so it's really coming together AND we are one week away from the Christmas holidays.

I can't describe how much I love my job and the people there. Everyday I go in smiling and come out looking forward to the next day. Yes I moan about being tired as everyone else does but I wouldn't change it for the world. This week has been lovely, getting ready for our nativity which the children are performing on Tuesday and Thursday which will be adorable!! We are slowly decorating the classroom and this week I'm going to get the children to make lots of little Christmassy things they can take home.

Since I last blogged, I've had my birthday! 24 years old, sounds absolutely crazy since I still feel about 18. It was a lovely lovely day, I had a lie in, cleaned the flat up a bit, had a nap and waited for Adam to get home from work. If you'd told me a couple of years ago that I'd be spending most of my birthday alone I probably would've cried, but I felt so unwell that it did me good to have some down time and rest so that I could enjoy my evening. We went for a couple of cocktails and a meal before having an early night, I felt horrific but it was a lovely evening and I really enjoyed it. It felt really good to be dressed up in a sparkly dress and I curled my hair. I felt vile on the inside but pretty good on the outside for once.

Me and my birthday cake 

All dressed up for the first time in months!

Healthwise, my pain has been no better, I've got tramadol for my really bad days and I have had to take them a few times now. The first time I took them was awful, I felt completely spaced out and I was really worried. It helped loads with the unbearable pain though so when that crept up on me again, I bit the bullet and took them and it didn't affect me so negatively the second time, or the third or fourth. Since getting my glasses, I'd say my headaches have got slightly better. I still get them but no where near as severe. My arms are still playing up a lot and my legs are weak so I'm using the wheelchair for shopping and things where I need to be on my feet. I'm not sure if I've posted on here since I got my wheelchair, it's helped me loads and makes going out at weekends much less stressful. It has opened some doors that have been closed for the last few months so it's made me a lot happier. I'm still waiting on the results from my MRI scan I had 3 weeks ago. The scan made me feel very unwell as the noise was ridiculous and I'm quite sensitive to noise. Also just not being used to staying in one position was quite stressful on my body. I had a full body assessment a couple of days before where it was found that I have scoliosis - curve in the spine. This has been caused by the way I walk because of the pain I'm in so makes it even more necessary that I use my wheelchair until I can start the physio and things to help.

I have some great plans for the holidays, spending Christmas at Adam's mums, Boxing Day and New Year at my mum's in Essex - though we are actually going to London for the fireworks on NewYear's!! It's perfect as I can take my wheelchair and be involved in the celebrations.

Tonight is the Alumi LCR at uni and a lot of my friends are in Norwich for it. Obviously I can't go which is disappointing as so many people will be there. I saw 3 of my lovely friends who popped round to see me which was great so I don't feel quite as much like I'm missing out. It would be nice to have the option to go but I don't so I won't dwell on it. Me and Adam popped out and bought some party food from M&S and a couple of beers so we are going to have our own mini party to make up for it.

Lastly, a huge thing that has made me ridiculously happy... we got 2 baby hamsters!!!! They were my birthday present from Adam and they are cutest, loveliest little things in the world. I love coming home from work and playing with them and Adam has really taken to them as well!

The beautiful girls Willow and Grace 

I'm going to try not to leave it so long from now on, but thanks for reading!!

Have a lovely weekend everyone xx 

When your legs don't work like they used to before...

Evening all!

Hope you're all having a lovely weekend so far, I am!

I can't wait for the day I write on this blog how much better I'm feeling and am making progress as at the moment each week I blog, it seems to be a constant decline.

My legs have been even worse this week, getting weaker constantly and hurting more and more. I was terrified for this MRI scan I have to have but now I can't wait. It's on Thursday, plus I finally have the full body examination on Tuesday that I was supposed to have last week. I just want these over and done with now and can actually get some answers and move forward. I spoke to work and they have been amazing. So supportive and happy for me to have the time off. I had to get myself a chair in morning briefing the other day and people were lovely about it. I was worried about people talking about me - silly I know because people really do care and want to know if i'm okay - but it's natural for people to ask each other, rather than come up to me. I've been trying to not care what people think and what people might say, especially as now I've had to be using a wheelchair to go food shopping. I never thought I would be pushed round a supermarket at the age of 23 but oh well, these things happen and I'm sure I won't need it for long. It's not the comfiest chair and actually makes my legs stiffer when I finally stand up again, but the pain is better and I don't feel sick, hot and like I'm going to pass out/throw up at any second so it's much better for me.

Here I am on the weekly trip to Tesco.

Last night Adam and I went to Nando's which was lovely. I don't usually do anything on a Friday night but forced myself to go as I was starving and really fancied it. I felt like death and my legs forgot how to walk on the way out and I had to cling onto Adam and have rests along the way back to the car, but it was so nice to be out. I've had a REALLY busy day today! I went into town for my hair cut this morning and then got my eyebrows done, nice little pamper morning which had made me feel a lot better about myself when I'm feeling rubbish. Then I came home, cleaned the flat (apart from the bathroom, Adam can do that for the first time since we've moved in!) then Adam came home from work and we had a little rest together before heading out to TK Maxx. I treated myself to some new clothes for work and I was telling him my 'struggling' scale on the way round. By the time I got to a 7, we gave up and went to Tesco's where I could sit in my little wheelchair. It takes the panic away that I will feel awful and means I can actually relax and enjoy the shop - as much as you can with food shopping... 

After my busy day, as you can imagine, I am not feeling good. My pain is fairly high, I'm exhausted and I feel like I might be going down with something again, my throat is a little sore and my chest feels tight. Tomorrow I plan on sleeping until the afternoon, and then have some planning and marking to do which I can do from the comfort of my bed or the sofa. I may pop to a friend's for lunch depending on how I'm feeling but that'll be a decision to be made tomorrow. 

As I said before, work have been fab and so supportive. The head asked me if I would be happy to speak to an Occupational Therapist about getting some extra help around the school to make things a little it easier for me. This was so lovely of him to think of this and I'll update my blog when I have more information about this. 

Lastly, on a slightly gross note, I have a weird lump on my hand/wrist which is a bit worrying. I have no idea what it is; some people have suggested maybe cartilage? Has anyone reading this ever had anything similar? I'll ask my doctor on Tuesday as it's getting a bit painful now and very uncomfortable. It's not very clear in the picture and is only visible when I bend my wrist down. I would love to hear if anyone has anything similar. 

The lump on my wrist - any ideas?

Anyways, I'm going to have dinner now and then go to bed - wild Saturday night as always.

Night night, hope everyone enjoys the rest of their weekend xxx

Shouted at by bouncers, fed gas and air and MRI scans ...

It's been a stressful, exhausting week being back at work. Everyday I've just been reminded of how much I love my job though. I am so lucky I have a job I look forward to going to every single day and feel unbelievably rewarded every second of the day. Whether it's the constant "I love you's", cuddles, cards or just seeing them read and write things they couldn't 7 weeks ago. I really am lucky and I think everybody should have a job they love this much.

Anyway, soppiness over. Last weekend was halloween and we had a night out planned. I had the loveliest day with my 2 best friends who came up to stay - we went out for Nandos, looked in a few shops, they were so understanding when we got back to mine and I got into bed for a rest. They sorted out their halloween costumes while I rested and tried to sleep. I hadn't seen the girls in 4 months which is ridiculous considering we all used to live together and we definitely won't be leaving it so long next time. We are all teachers and lead very very busy lives! Once I'd rested, we all got into our costumes and started having a couple of drinks before we went out. It was my first night out in months so I was nervous but excited. It's shocking that I used to go out 4 times a week without a second thought and now I get nervous for one night. Unfortunately I was right to be nervous. I was having a great night and then needed a sit down. My pain was building up and I was feeling exhausted and started getting emotional. All I needed was to sit down, I ended up on the floor and couldn't get up, my poor little legs had just had enough. I was agony and crying ALOT. The bouncers were no help whatsoever and so the St John's ambulance came and took me to the first aid room. They took some details and said the only thing they could offer me for the pain was gas and air. I had already exceeded my dose of my painkillers for that day so they couldn't help me there. The gas and air worked wonders though, it really helped and calmed me down. We couldn't get a taxi as it was so busy and I needed the toilet. The lady in the first aid room offered to take me but I was scared and wanted Adam to. He tried to take me in and the bouncer came and dragged him away, Adam calmly tried to explain the situation and the bouncer was awful to him shouting "she's not fucking disabled". I was on the floor screaming and crying and was completely ignored. Luckily Adam saw the person who runs the night who he knew who let him come back to me. Being spoke to in this way has really upset me and has made me not want to go back.

Me and Adam as The Joker and Harley Quinn

My beautiful friends

I am concerned, upset and paranoid about what people think of me and how they might judge me. We needed to go food shopping and I was worried as I felt so rough. Adam said he would borrow a wheelchair for me as I couldn't walk properly and because of the events of the weekend, I was worried that people would think I was faking. I shouldn't have to feel like this and it sums up the stigma of the invisible illness. I now have a card in my purse that states my illness and how it affects me to carry round in case I am ever criticised in this way again. My friend text me earlier and asked if I wanted to go to the LCR in December. The answer at the moment is no. I do not want to go back to somewhere that does not listen to people in moments of need, accuses someone of lying and just being 'drunk' and not offering anywhere for people like me to sit and rest if needed.

On Tuesday, I had a doctors appointment for a full examination of my back and legs. Typical that I left work allowing an hour for the journey which usually takes 35 minutes, there was a huge accident on the main road and it took me an hour and 10 minutes, making me late for the appointment. Therefore I could not have the full examination. The doctor felt my legs and tested my reflexes and realised my leg muscles are not functioning properly. This is why I've been struggling to walk to much and I am not standing correctly. She has sent a request for an MRI scan on my back and when I have had that and the results are back, I will start on physio on my legs. I am really hoping this isn't a long process and that I can get slightly more on track again. I feel like Im constantly getting worse at the moment and nothing is getting better. I always remain positive though and I won't let it get me down. Yes I have my moments - Wednesday night I sat and cried before I went to bed. Living in constant pain is hard. Very hard. Being constantly exhausted (a different level from just tired) is completely draining. The illness is part of my life now, it's made me a different person but I will continue to fight every day and cling on to the hope that one day I will be better! :)

Had a long sleep this morning - til 2:30 in the afternoon oops - and then went and bought myself a lovely new bag and shirt. The bag is much better for me as it goes across my body so I don't have to hold it on my arm which has been a struggle. We then had a nice chill out with a coffee before walking home and sorting out boring house stuff. I have a full day of marking ahead of me tomorrow so I need a good sleep tonight. My arms are killing me now after all this typing, pain killer time! Gonna curl up and watch the neighbours firework display from the comfort of my sofa and blanket!

My favourite

Thanks for reading! xxxx

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

Amy 0 - 1 Cold

Evening all :)

I'm writing this from bed, had my first nap in a couple of weeks which I'm a bit disappointed about. I've had a monster cold this week, lost my voice completely on Tuesday (I think?), I've lost track of the days. Teaching is very hard with no voice but luckily the children felt sorry for me and were pretty quiet and listened to me whispering! They respond better to me whispering anyway...

I hate having a cold, it has completely wiped me out. I remember when I used to moan if I had a cold when all I felt was a little sniffle. Nowadays, a cold affects my whole body and makes everything flare up more than usual. My pain is through the roof, even 8 codeine a day aren't really touching my pain anymore. I'm hoping once the cold is out my system, the pain will settle to a bearable level again. I've been so much weaker again this week as well, needing to sit down more often, even earlier nights etc. Not ideal but as always, work has kept me going. The good thing about teaching is that I don't have a choice, I have to go in. Once I'm there, the children take my mind off everything and I love every single day with them. They stress me out but in the best way possible, because I care about each and every one of them.

I had a ton to do during the week as well, we had a deadline for getting all our assessment data onto the school system and finish getting our classrooms completely up to scratch. This took longer than I thought but by Thursday evening I was more or less done. I even left school at 5 on Friday which is really early for me! I was determined to make the most of having a Friday night the best I could, except I was struck down with one of my horrific headaches, the type where I cannot even open my eyes without getting shooting pains and extreme dizziness. I tried to ignore it for a little while, took some painkillers and finally gave in at 6:30pm and went to bed. So tragic and not what I had in mind. I knew I was never going to be out partying til the early hours but I'd hoped I'd at least make it until 9pm! I curled up and chose a new TV show on Netflix to start watching, The Returned which looked quite good. I watched 10 minutes before realising I had no idea what on earth was going on. When I'm having a bad day, my brain gets foggy, known as 'Fibro Fog', meaning I cannot concentrate on ANYTHING. Luckily I've not had this at school yet and am hoping I never will. It tends to be an evening/weekend thing when I've run out of spoons - see my post 'The Spoon Theory' to find out more about the theory. Anyway, it means I can't watch TV unless its something I've about 10000000 times and know it almost off by heart. I have a handful of films for times like this. These are White Chicks, A Goofy Movie, Cloudy with a Chance of Meatballs and Little Man. Only when I went to watch Little Man last night, I was heartbroken to see it had been taken off Netflix! I settled for White Chicks  instead and was asleep pretty quickly. I am almost never able to watch a whole film in one go, I end up falling asleep, so little bits have to do. Don't ask why these films have become my 'easy watch' films, they're all very random but they give me something to do when I can't focus on anything else. I find it so hard watching films, they require a lot of energy which I know is impossible for some people to understand. In the cinema it's easier as it's such a big screen, but at home, I usually lack the ability to focus for that long so I almost always end up confused and with no clue what is happening. I haven't even watched Mockingjay yet; I started watching it one night with Adam and a couple of his friends, but I was embarrassed that I had no idea what was happening and went to bed in a strop. Yes, sometimes I act like a toddler and throw tantrums but its the only way I can deal with my frustrations sometimes.

I woke up this morning with my head still pounding, took a while for me to get up but me and Adam had already decided we would have a nice, long lie in so we stayed put for a while. I took even more painkillers which still did nothing and put one of my headache cool pads on. Eventually it started to fade and I was able to actually think about what to do for the rest of the day. We had a few things to do so we went into town, we only went to a couple of shops before I needed to sit down. We called it a day and went to get lunch, my pain levels had gone sky high again and I was desperate to get something to drink so I could take more codeine. The pains were stabbing my whole body which makes it difficult to think of anything else. The painkillers dull it just enough to function again and enjoy my day but I'm starting to worry I might need something even stronger. We had the loveliest lunch in Patisserie Valerie, we both had Eggs Benedict Royale and tea and scones. Was absolute heaven. After lunch, I'd had enough, Adam dropped me home so I could have a sleep while he went to buy a few more bits for the house. Now he is at work for a couple of hours and when he gets back we are hopefully going to go for a drink in the pub just round the corner. He has to be up really early for work so it won't be a late one.

I was feeling very down and frustrated again last night about my lack of social life. I know I am the one who made the decision to work but it doesn't make it easier seeing all my friends busy social lives at the weekend while I'm sitting in my pjs, cuddling a hot water bottle and not even being able to watch a film. That's why I'm determined to at least make it out for one drink tonight. I can sit down in the pub (hopefully) so I don't have to worry about that and it's only round the corner. I've had such a lovely day with Adam, we haven't seen much of each other recently even though we live together and I'm a bit gutted that I've felt so poorly. I always feel like I've ruined the day when I have to go for a sleep, especially when it's our first day together in ages but he's so understanding. He looks after me  so well :)

Let's hope I shake this cold off very soon and can feel a bit more human again. I'm not sleeping well at all which isn't helping. It stresses me out when I have so much to do and am unable to do it. Today was supposed to be so productive, changing my address on everything and sorting out bills and other boring things like that. I've done none of that and I'm not sure my foggy brain will allow it. I need to save my brain for marking and work stuff tomorrow so the paperwork may have to wait til next weekend now. The weekends are far too short when I need a whole day just to recover from my working week before I can even think about anything else.

I know I'll get everything done, I always do, it just takes me a little more time than most people!

Tea and scones, the blackcurrant jam was incredible.

Moving day was the most stressful day of my life.

I'm am writing this from our lovely new flat! I am so happy here already and it's only been a day. I had another good, yet stressful week and was feeling generally okay until Friday. When I say okay, I just want to iterate that this does mean I feel well. I just feel slightly better than normal. As much as I'd like them to, my symptoms haven't miraculously disappeared. I had lots to do and stayed late at work most days just to try and get on top of things. I knew I was going to miss out on a weekend of planning etc due to the move so I was stressing slightly about this. I couldn't wait though and all week I was counting down the days til we would be in the flat. Friday I woke up feeling like absolute death, I was in a lot of pain and just wanted to curl up in a ball with painkillers, a hot water bottle and lots more sleep but I knew I had to go in. Once I'm dosed up and on the go, I tend to feel more human and the busy job gives me a reason to keep going - this is one of the reasons I love teaching. I feel it actually helps with my health as there are so many more important things to think about throughout the day. I powered through and as soon as I stepped through the door on Friday evening after work, it was non-stop. We moved all the things that were already packed, went to Argos and bought some furniture and headed to the flat to start building things. We finally got into bed at about midnight, had a little lie in and started again Saturday morning.

During the night I kept waking up. I wasn't surprised as I often have nights where I can't sleep - this unfortunately is one of the symptoms of ME - especially if I have things on my mind. It seemed like every time I woke up I felt more and more ill. When I finally woke up about half 8 and decided I would get up, I realised I had the start of a cold. This obviously hits me harder than most people and I honestly felt like I couldn't move. The pain over my entire body was unreal, I didn't think I was going to be able to get out of bed, let alone move house. But I had no choice. I dragged myself up, managed to shower and wash my hair - with lots of rests - and finally started packing things up. Adam knew how ill I felt and kept making sure I wasn't doing too much. He gave me easy things to carry like pillows and blankets. We didn't have a van or anything so it was a case of constantly packing up the cars, unloading them and starting all over again. We barely have any furniture so most things do not have a home yet. As bad timing goes, I had a hair appointment booked, seeing as we were meant to be moved in the weekend before which I didn't really want to cancel so I went along to this at 4. Luckily this was when Adam had arranged to pick up the sofa we are borrowing from his mum until ours arrived. I was clearly not going to be any help lifting a sofa so he didn't mind me popping off for an hour for my hair appointment. We then headed back to Argos to get curtains etc and finally headed back. The last few runs were the most painful, we had both had enough and were losing the will to live. The last thing to come with us was the bed and putting that together and putting the new bedding on was such a lovely feeling. We ordered a curry at about 10pm and cracked open the champagne. We were both absolutely exhausted and couldn't wait to go to sleep! I slept awful again, which was no surprise, having a bad health day and sleeping in a new environment was never going to be a good nights sleep! I woke up still feeling awful but a slight improvement from yesterday. The pain is still pretty bad but no where near as horrible as yesterday but the cold is making me feel lousy. The IBS has flared up again today so that's not been ideal. I'm almost out of codeine so I'm trying not to take them too much until I can get some more on Wednesday. Luckily my NHS card will have arrived by then so I don't have to pay for my prescriptions! I've paid £10 this month and it will cover all my medication so is going to save me loads.

I spent today sorting out the bedroom, which is almost done apart from one bag. The lounge is a mess still because we need more furniture and most of the stuff is Adam's so he can sort that out :) I've had a relaxing evening sorting out my classes books, watching films, knitting and cuddling up with cups of tea and my hot water bottle. Adam has been at work all day and I can't wait for him to see the improvement to the flat in one day.

I'm already so happy living here and I know we are going to be so happy. I feel so relaxed and at home here and I look forward to many happy months with my favourite person!
Here's to hoping for a lower pain today tomorrow and a good night's sleep! xxx

The bedroom - the plastic drawers are temporary!

Lovely little kitchen.

We need a lot more furniture in here but here's our little lounge.

NQT Week 1 - SURVIVED.

I think blogging will now only be a Sunday thing after how ridiculously busy I've been the last week! Last time I blogged I was massively stressing about going back to work after the horrendous stomach pains I experienced when I went home for the weekend. This improved dramatically overnight thank god so I was feeling a bit more positive on my way in on Monday morning! I was very nervous since it was the first day I was to have all of my 30 children sat at desks doing work at the same time but they were fantastic and made me proud. They are year 1 so it is obviously very different to what they were used to in reception but they are coping brilliantly and making me much more confident about the year.

The week went okay.. could have been better, could have been worse. A lot at the moment is trial and error since the school are making some changes to how they teach the curriculum so everyone is learning at the same time! This makes it easier for me and I don't feel as useless if something does not work. All in all, I have had a great week getting to know the children even better and trying new things with them but it has also been one of the most stressful weeks of my life. There are 3 other NQT's and lots of other new staff so I have a great support network if I need anything. The other year 1 teacher and my TA also could not be more helpful and I wouldn't have got through the week without them. I am definitely looking forward to seeing what we can achieve over the next year!

It hasn't helped that my health has been far from great as well. I have managed when I'm at work, but each day I get home has been awful, the exhaustion has taken over and the pain gets worse. I managed the first two days just with ibuprofen - and determination, but unfortunately by Wednesday I was back on the codeine and have been ever since. I kept getting horrific headaches that were making me feel sick and the dizziness came back in full swing which was a shame because the compression socks have been really helping with the dizziness. However, I realised that I was allowing myself to become dehydrated by not drinking anything all day. I would have a coffee throughout the day if I was lucky and that was it. For someone with chronic headaches and pain, it is important to stay hydrated so I have been making an extra effort to get filling myself up on water.

I spent the entire day yesterday planning, sorting out pupil data and making resources and am feeling much more prepared for the week. I enjoy this side of the job as well - which is good seeing as it takes so long - which is so crucial in what I do. If I did not have the passion for the job, my health would take over and I'm sure I would not be able to work. It makes me happy and excited to go in everyday and make (or try to make) a difference.

On a slightly less positive note, while I am feeling good about my job and working life, I have had a mental blip in terms of my social life. I went for a meal on Friday with Adam's mum and uncle which was lovely. We went at 6 which was good for me as we were then home by about half 8/9 and I could have an early night. I was feeling a bit frustrated as I could not make it past 10, and from 9 I was practically stuck to the sofa fighting to stay awake. However, I knew I would be woken up early when Adam had to leave for work so I didn't mind the early night. Weekends are the time I find hardest as they are a constant reminder of what I should be doing on a Friday/Saturday night. I cannot get away from seeing the snapchats/instagram posts of people's nights out, getting drunk etc, which is hard to see when you're tucked up in bed at 8 with a hot water bottle watching Monster's University on a Saturday night. I would love to be able to go out and have fun, not caring what time I stay out til or how much I drink but sadly, this is impossible for me when I have work on Monday. I need at least 4 days to recover after a night out so this would never work. Even if I went to bed at midnight, I would need a good couple of days to recover. This is not how I expected to be at the age of 23, especially as a year ago, this was not really a problem. The more I stress about things, the more pain I get so this has been quite a pain-fuelled weekend. I've shed my tears and picked myself back up again and reminded myself that it's okay to feel like this. I keep so positive throughout the week and am constantly so grateful that I am still able to work unlike many people with this illness. However, it would be nice to be just have one weekend that didn't revolve around sleep, rest, painkillers and stressing about the following week.

On a plus note, me and Adam ordered a sofa today and we are moving into our flat on Saturday!! I'm so excited and I know how happy we will be in it :). Next time I blog will probably be from the comfort of the flat. Even though we have hardly any furniture, it will be so nice to finally have our own space.

Hope everyone has a good week :) xxxx

On a scale of 1-10, my pain was a 12.

I've been back at work this week so I haven't had the chance to blog! I've obviously been very busy and exhausted with the early starts but I'm enjoying being back in a routine. I think routine helps me health-wise. Obviously I still feel awful everyday and the pain doesn't go away but it gives me a purpose and something to focus on.

On Monday night I barely slept while I was anticipating the pain of the first 6am alarm after six long weeks off! We had a conference day in a hotel with a cooked breakfast and buffet lunch included so this made it slightly more bearable. The day in itself was engaging and interesting so I didn't feel too bad. It was great to see everyone that I met when I started in July and met some new staff as well. We then had another conference on Wednesday with every school in the Trust which was a bit more painful for me being sat in a chair for hours being talked to. I enjoyed hearing about the other schools and spent time with the other NQT's (Newly Qualified Teachers) in my school. On Tuesday I was absolutely exhausted and could barely function in the evening but I felt a bit more alive on Wednesday and even managed a quick trip into the city with Adam since we finished at 2:30. However, by Thursday, my pain had increased and I had to go back on the codeine. Not ideal when I'd had a few days without it but sometimes its all I can do. We had a training day on the curriculum and time with the other teachers in the phase to get some planning done and finishing preparing our classrooms for the children's return on Friday - for those of you who don't know, I am a Year 1 teacher. I went to bed at 8 so I could at least have some chance of feeling refreshed in the morning.

Friday was fantastic. It was so lovely to see all the little ones faces again, seeing their new uniforms and how much they had grown! They did me proud and settled back into school with no issues at all. I felt pretty rough but I was so busy and enjoying my day and getting back into the swing of things. There is still a lot to sort out in the classroom and plenty of planning to be done but once I start properly teaching again tomorrow, things will fall into place.

Me and Adam had already decided we were going to go back to Essex to see my mum on Saturday and I woke up feeling fairly average so we set off mid afternoon. We had a lovely catch up with my mum and her fiancé, had a takeaway and a couple of drinks, watched X Factor and Austin Powers before settling down for the night.

I felt quite good when I went to sleep and expected to sleep well. This did NOT last. A couple of hours later I woke up with a tummy ache and I knew the IBS was flaring up again. I was annoyed that I'd been woken up and dragged myself to the toilet. Once I was in there, I have never experienced pain like it. My entire body felt like it was shutting down and I could not hold my own weight and had to use the towel rail to keep myself upright. I was sweating and shaking and all sorts were running through my head. I was absolutely terrified as it was the middle of the night, no one knew I was in the toilet in this excruciating pain and I couldn't physically get onto my feet and go back to the bedroom. I stayed there for about half an hour before it finally started to fade. I was getting to the point where I could see myself spending the night in hospital. It was that bad. My usual nerve and joint pain on a good day is around a 5, a bad day can range between 7 and 8, I've experience tummy pains at about an 8 before but this was a full blown 12. The worst pain I have ever felt and even as someone with chronic pain, I honestly didn't know it was possible to be in THAT much pain.

So obviously now I'm nervous about work tomorrow. I know I need to go in but its worrying me. This is probably making it worse so I'm trying to relax. I've taken my anti-spasm meds and am tucked up in bed writing this with my hot water bottle so fingers crossed I'll have a better night and better day tomorrow. The pain has gone down to a 6/7 but since I'm not used to it being this bad in my stomach, I'm struggling to function the way I do with my normal pain. I'm exhausted from being up most of the night so I'm hoping I can actually sleep tonight which should help too.

Hope everyone had a lovely weekend. As much as my stomach hurts, it didn't ruin my weekend and I had a lovely time at home! xxx

The stigma of an invisible illness

I've had another really rubbish couple of days. My IBS has been horrendous, has wiped every bit of energy I have and the pain has been almost unbearable. It hasn't been this bad since I first started getting ill and I had to stay off wheat and dairy for nearly a year. This is something I really don't want to have to do so I'm hoping it will settle down again on it's own with my new tablets. I'm still really achy and sore from sorting out my classroom on Friday but *touch wood* my other pain has settled slightly in the last couple of days. I had a whole day without codeine yesterday which is quite a big deal for me.

This brings me onto the social stigma against taking medication. I feel frustrated that so many people do not understand what it is like to have to take medication just to feel human and be able to get out of bed and have a normal/semi-normal day. This hasn't been directly aimed at me though I do feel people don't understand but I have seen a lot on the internet - particularly on Instagram where I follow a lot of people with the same illness as myself. I am fully aware that I am actually one of the mild cases compared to others and am extremely lucky that I am able to work. Some are completely bed bound and require help with everything we would take for granted. However, even these people are criticised for taking "too many painkillers" and "not being active enough". It hurts and is frustrating as this is not the life anyone would choose. I do not enjoy spending most of my summer holidays drugged up on codeine and laying in bed around 70% of the day. It is NOT a 'Sleeping Beauty' illness that people have in their mind where we enjoy sleeping and resting. The reality is that everyday hurts, resting is essential after any physical exertion such as food shopping (which most people would not see as physical exertion). The constant headaches, nausea, lack of temperature control and dizziness make any simple task much harder than it should be.

If a person has diabetes or another illness similar, they would not be told to stop their medication. So why should it be different because I have an illness that people can't see? Everything I take benefits me. I take the anti-depressents because they help me sleep - which it vital. I take vitamin D because my body is deficient. I now take mebeverine to stop my stomach spasming. I take iron and vitamin B because it helps give me more energy. I take ibuprofen when my body is stiff and it hurts to walk down the stairs. I take codeine because it is the only thing that dulls the pain enough to allow me to live a normal life. And finally, I now have to wear compression socks to aid my circulation and stop my blood rushing to my feet. No, it isn't ideal and it isn't what I want. But at this moment in time, it's all I am able to do and it suits me just fine.

One of the hardest things about CFS/ME and fibromyalgia is that they are completely invisible. From the outside, I look like a normal, healthy 23 year old. No one, apart from my family and Adam, has seen me at my worst and they don't see the pain I endure on a daily basis. They see me on my good days where I'm doing normal things. I respect that it must be hard for others to understand but I just want people to try.

This is NOT how I want to start my day but it is better than giving up.

I have tried graded exercise therapy, didn't work. I have tried ignoring the pain, didn't work. I have tried heat pads on my limbs, cold pads on my head, didn't work. I am not at a loss though, codeine helps. So I will stick with it. I often feel like I'm being told off for not trying anymore. I am. Every day is a constant struggle and I know I am winning. I could let it take over but I don't. I stay as positive as I can but emotions get the better of me at times. I'm tired of being embarrassed when I have to turn down plans because I won't have the recovery time, I'm tired of popping pills in front of people because the pain is so bad, I'm tired of people questioning why I'm wearing a wrist support, I'm tired of explaining to people why I go to bed at 9. But more than anything, I'm just tired of being tired. No matter how much sleep I get, with CFS and fibromyalgia, I'm always going to be tired - tired to the point that I cannot function which is hard for most people to understand.

Things aren't all negative though. Since starting this blog, I have had so much support from people and I am so grateful. Many have offered advice, shared their own stories or just congratulated me for raising awareness. I feel some people may get bored of my constant posts, but my illness is a big part of my life so while everyone else may be posting pictures of their nights out, I post about my days in bed!

On a much more positive note. I'm going back to work tomorrow! I don't know where the last 6 weeks have gone but I'm ready to go back. Having a routine benefits me health-wise and I know my body will hate for the first couple of weeks, I'm sure I'll settle back in quickly. I'd be lying if I said I wasn't nervous. I'm not sure how I will feel and obviously at work I can't take myself off to bed and lie down! But I've done this for a whole year now and I know I can do it. I'm excited to be back in the classroom with my little lovelies and their little faces always keep me going.

Apologies for the rant, it has to happen every now and then! xxxx

Onwards and upwards

After my meltdown on Wednesday I've been feeling loads better!

I spent all day yesterday making resources for my classroom (and having plenty of rest) which definitely helped me. I was still in pain but the painkillers dulled it and it did me good to have a day where I could just sit down all day. Obviously this isn't ideal if I want to get some strength back in my legs but it helps with the rest of my symptoms. I had a clean up in the house as well which always puts me in a good mood.

I had hoped to go swimming in the evening but by the time it got to the right time, my back was agony and all I wanted to do was sleep. So I made sure I had a nice early night and set my alarm for 7 so I could go before I went into school. I had so much to do in my classroom and I haven't actually managed to get it all done, but it's just the last bits that can be done on Thursday before the children come back. I had an average sleep, took me a while to fall asleep then I was wide awake at 4. I watched the Goofy Movie for a bit (my new falling asleep film) and finally drifted back off. This made the alarm a bit more painful but I was determined to start my day with a swim. I was in a fair bit of pain when I got up but I try not to take painkillers if I'm going to be doing something active. If I'm fully aware of my pain then it's less likely that I will overdo it and hurt myself. I was pretty proud of myself and got my 40 lengths in which I hoped I would. My membership at the leisure centre includes 'SwimTag'; you wear a wristband which tracks your stroke, lengths, pace, calories burnt etc. I find this really helpful and can always see the difference between my good and bad days.

Today's swim. 

I went straight from the pool to work and spent the next 5 and a half hours changing the paper on the displays, stapling things on the wall and tidying. It's still not exactly how I would like it, but it's definitely getting there!

Some pictures of my classroom. 

On my way home I had a lovely long chat with my mum. I do miss seeing her all the time but we still have regular catch up's! When I got in, my compression socks had arrived so I am wearing them now to get used to them. They are very comfortable and fit perfectly so I'm hoping I will start to see the difference. It's frustrating that I've had my diagnosis for nearly a year and have questioned the dizziness and it's only mentioned now that it is common in CFS to have poor circulation. When I stand, the blood rushes down and the socks are supposed to encourage the blood back to my heart and help me feel better and less weak. Fingers crossed they help me stay on my feet for longer.

My very attractive compression socks. 

I've had a cup of tea, slice of banoffee pie and am now having a much needed rest while watching Pretty Little Liars. I've had a busy couple of days getting things ready for school and I want a weekend where I don't have to worry about it. I can't believe how quickly the summer holidays have gone. I'm excited to go back and nervous!

I just have a few more bits to do for school and then I can get into bed. I'm going to try and get up relatively early the next couple of days to get my body back into a routine of getting up early and living on less sleep.

As well as feeling a bit better physically, I'm back to my usual happy self again. I know it's okay to have a bad day and feel angry and upset about my health but it's important to stay positive. I know I can get through my bad days and I know I have the support of my friends and family. I often feel guilty that Adam gets the brunt of it most of the time. He sits with me when I'm feeling sad, lays next to me when I want to spend the afternoon in bed and brings me what I need when I don't have the energy to move. I'm sure he didn't expect when we got together that it would be like being with an old lady, but he never complains. I'm so grateful for everything he does for me and when I'm having a good day like today I can really see it! <3 xxxx

My LOVELY new doctor

I've had an emotional day today. Such mixed emotions involved.

I woke up feeling absolutely horrendous, I've been really suffering with my IBS at the moment and had stomach pains which kept me awake pretty much all night. So obviously I woke up exhausted and was still in a lot of pain. I needed to book an appointment with the doctor this week anyway to discuss some things and get acquainted with the doctors in Norwich. Being in so much pain I figured today would be the perfect opportunity. I went in with my usual list written down of things I wanted to discuss. I was a bit apprehensive as usually every question and concern I have is dismissed and doctors openly admit they know little about my condition. I knew that there were GP's at this surgery who specialise in CFS so was hoping I would see one of these.

The appointment was probably my most successful so far since my diagnosis. I explained I had CFS/ME and the doctor was really understanding and kind about it. She started discussing my symptoms with me and answered a lot of questions I had. I asked if my dizziness when I was on my feet was normal, which she said it was, however, has advised I started wearing compression socks during the day, which have been ordered and should be here by the weekend. This will help with my circulation and hopefully help me become a bit more active - or at least not feel like I'm about to keel over 24/7. She also prescribed me some tablets for my tummy which have already started to help. My IBS gets worse at times of stress and going back to work obviously is worrying me.

The doctor also suggested I get my bloods re-done which haven't been done in about a year just to make sure there are no other underlying reasons as to why I get so dizzy and weak. This probably won't be for a couple of weeks now but at least it has been mentioned. Once I had finished at the doctors and feeling much happier that I finally had a doctor with good knowledge of what I'm going through, I then got to go and see the flat for the first time! I loved it and it's made me even more excited to move in.

I then had a bit of a meltdown. We had walked to and from the flat, and my usual dizziness, nausea, lack of temperature control, plus the exhaustion, stomach pain and all my usual pain just got on top of me. I threw a strop when I knew we had to leave the house and ended up getting myself in a state and crying. It all gets a bit much sometimes that the simplest of things can leave me feeling so ill. I had a lovely weekend with my friend and was feeling better than usual. Until today. It gets very frustrating that I don't know if/when it will get better. I try and stay so positive but everyone is entitled to a bad day! I get angry that my body can be so useless and can't cope with usual everyday things anymore but there is no point dwelling on this as it's not something I can change.

Once I'd snapped out of this mood, I powered on. We got ready to leave the house and I took my prescription into the pharmacy. The pharmacist was lovely and helped me sort out paying a £10 direct debit a month to cover my prescriptions which will save me a lot of money since I now need around 3 prescriptions a month. I was impressed as no pharmacist has mentioned this to me before and it made me feel even better about being in Norwich. The doctors and the pharmacist were nicer and more helpful here than my doctors at home. This also helped greatly with my mood. We went to Adam's mum's house and then came home to a tax rebate! So obviously I got dragged into town and bought GBK which was heaven.

I am now resting up and watching Pretty Little Liars before me and Adam are going to make - or attempt to make - a banoffee pie, my absolute favourite dessert.

My pain is still high but it's easier to deal with when my mood is better. I've taken my painkillers which haven't really done anything but my stomach is 10x better than this morning. I'm hoping that tomorrow will be better than today as I really need to get prepared for going back to work.

Wish me luck with the banoffee pie!
xxxx

2 years ...

Morning all :)

I am off to Bournemouth in a little while for my friend's birthday, I'm very excited but also a little bit nervous. I find it sad that every time I'm going somewhere away from home, I feel a bit nervous and anxious about how I'm going to feel. Questions always run through my head, what if the pain gets unbearable? What if I need a nap? What if we go somewhere where there is a lot of walking involved? Obviously this is something I never had to worry about before I got ill. I won't let my illness hold me back though. I'm not going to feel any worse away than I will at home (I hope) and I know what I have to do if I do have a flare up of symptoms. My friends are understanding and I'm staying with a family I feel comfortable with so I can't see there being a problem!

So far today I am feeling fairly good. I had a long sleep to prepare myself for the 4 hour drive and am feeling pretty well rested for a change. We'll see how long that lasts once I get onto the motorway! I can feel the pain in my arms already building up but I'll make sure my painkillers are within easy reach in the car. I was meant to leave at 10, its now 10 past 11 and haven't even packed yet but I don't want to rush and stress myself out as this is when I start to feel worse.

We are going to an inflatable water park on a lake tomorrow which I can't wait for! I'm sure my body will hate it but I know my limitations so I'll be as careful as I can. I know it will be worth it anyway. We're then going for a meal for Emma's 21st before I have the long drive home on Monday. I'm so happy I am managing to get in my annual weekend away to the New Forest to Emma's, it wouldn't be summer without it! The holidays is the only time I can plan these weekends away as I need the recovery time afterwards.

This picture came up on my TimeHop this morning...

This is when I was taken ill on holiday this time 2 years ago. This is when my health problems seemed to start. After this, I felt quite tired for a long time though this did improve slightly. I also started having lots of problems with my stomach which kept getting dismissed as IBS. I spent a year off wheat and dairy and my stomach made a bit of an improvement but I then began to feel very tired again. I knew something was wrong but the doctors dismissed it all. There is more about this in my first blog post 'Diagnosis'. Up until last summer, I was able to do everything I could before but just felt more tired and achy. Now I'm much more limited but the aches are now full blown pain. It's sad to think I might still be completely healthy if this hadn't have happened on holiday but without proof this is the trigger, it is hard to tell. 

I still wouldn't change anything and am happy (most of the time) :) 

Need to go and pack now for my weekend! Hope you all have a good one xxxx