1 Step Forward, 2 Steps Back

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

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

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

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

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

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

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

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

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

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

Neurology, brain scan, more bloods. The never ending journey!

I haven't blogged in absolutely ages! I thought I would wait since I've had a fair bit happening.

Last time I properly blogged, I had just had my neurology appointment. This was pretty pointless and did not give any answers. I felt a bit deflated after seeing him as he focused more on the headaches than anything else which don't even cause me that much grief anymore.

So, thinking back. My hands are worse than ever. Every time I sleep, even if just for an hour, they seize up, become excruciatingly painful to the point where I can barely move/use them. They remain in a claw-like position until they loosen up. This, luckily, is usually within half an hour. I saw a different doctor a couple of weeks ago and she brushed it off as 'just the fibro' and 'just the ME'. This seems to be fairly common when you suffer from a chronic pain condition, that any new things are just pushed aside. They are now swelling sometimes and I can feel the joints moving in my thumbs which is very very painful. Adam and I found a clinic in London that specialises in individual treatment plans from a neurologist, rheumatologist and nutritionist which we asked about being referred to that. My doctor told me on Wednesday that she wouldn't send me there yet, as there is one in Norwich. I asked about that one when I first moved and she said it didn't offer treatment, only diagnosis? So I am a bit confused by that. I wonder if they say that to patients until they realise they cannot actually help us alone.

Anyway, I went back to the doctor on Wednesday to chat about things as mainly I still wanted to ask about my hands. She had a feel of them and noticed that the muscles are very tight - this was in the evening and I explained they did not even hurt and the muscles were tight. So she is very concerned about that and has asked me to take pictures and videos of what they look like in the morning. She does not believe it is 'just the fibro or ME'. She is concerned there could be a possibility of auto-immune disorders happening which is attacking the muscles. Therefore, I have more blood tests booked to look for heightened inflammatory markers and whatever they look at for auto-immune things. I don't understand a lot of it myself but I don't need to until the results come back. It made me feel much better than someone was actually listening. I know my body and what my new 'normal' is and the pain and loss of function in my hands is definitely not normal.

This morning, at 7:30am (!!!!) I had my brain scan. I was pretty nervous as I have already had one on my back and it was not a nice experience. This one was even worse. The nurses put the ear plugs in for me this time which did nothing to dull the noise. I am sensitive to loud noises which is common in my conditions so this was quite traumatic. At one point, I thought I was going to have to press the button for them to get me out. I soldiered on through though and it only took about 15 minutes. For a head scan, they put a large plastic cover over your head and face with only a tiny mirror above your eyes so you can see what is happening in the room. I felt very claustrophobic, but as I said, it was only around 15 minutes then I was out and free to continue my day. Which as you can imagine, I just wanted to sleep. We went through the McDonalds drive-thru to get some breakfast as it was still only 8am! I asked for a breakfast wrap with no egg (I am intolerant to eggs) and no ketchup. So of course, being useless, they put both in. I didn't notice until I got home and Adam very kindly scraped it all out.


In general, I haven't been feeling great at all. The pain has been higher than usual even on a 'good' day, I've been exhausted and experiencing lots of my other horrible symptoms. I hugely overdid it two weeks ago, I went home to Essex for the weekend because my brother and his girlfriend had their baby on the 4th March. SO I AM NOW AN AUNTIE! He is the most beautiful little baby and I wish I could see more of him. I'll be at home for Easter Sunday so I can have lots of cuddles them. As well as having a newborn baby, the moved house the following day. Not ideal at all and I helped with the move - obviously only carrying small things, limited walking etc, but I still suffered awful payback. It didn't hit me properly until the Monday night when I was sick and couldn't eat or anything. I was in lots of pain and ended up having to call in sick on the Tuesday. I have learnt that I cannot do the 2 hour drive home on my own unless I have more time to recover.

Me with my beautiful nephew, Joshua

Work is absolutely fine as always as well. We have to start thinking about what year groups would be our preference next year and it breaks my heart to think about leaving my class and seeing somebody else teach them. I think they will always be special to me because they were my first class and they are just so lovely.

We only have 3 and a half days this week then I am off for two weeks!! I have plans as well for once. I am going to Telford to see my friend's cheerleading competition. It is strange because 2 years ago I competed there and now I will be being pushed around the arena in my wheelchair. What a contrast.

Me with the friend I will be cheering on! Back when we came 2nd in a competition <3

I really hope the two weeks off gives me a good chance to rest and recharge. I will get both the blood test and the brain scan results in those two weeks as well. If nothing comes up, I will be referred to the CFS/ME clinic and if something does come up, treatment may start for that. So either way, there is still more things to try to get me to recovery!

Thanks for reading :) xxx

A day in the life of me with M.E!

Sometimes I wonder, when I complain about how I feel, even though people say they understand, how could they? 

I decided to explain what it feels like to me - some people may be different but this is how my illnesses affect me. 

So as you probably know, I suffer with chronic fatigue syndrome/ME which stands for myalgic encephalomyelitis and fibromyalgia. I also have a couple of secondary issues that have stemmed from the original diagnoses such as scoliosis and restless leg syndrome, but this are not life-changing as ME and fibromyalgia are. 

I decided that I would keep a diary for a day of how I am feeling both physically and emotionally. So here goes... 24 hours with ME... 

21/10/16 9:30pm

I just finished watching Sherlock with Adam, after the most amazing roast dinner. I'm all set for work and snuggled up in bed. 

21/10/16 10:30pm 

My back decided an early night wasn't on the cards tonight, I'm in agony and can't get comfortable at all. This is what we call "painsomnia", it is very very unpleasant as I'm sure you can all imagine. The muscles in my back are spasming, twitching and throbbing so I've had to get out of bed to get my painkillers. Adam has also sprayed me with deep heat which often, with the painkillers, eases it just enough to get comfortable. Not a great start to my working week when I can't even get the sleep I need. Let's hope they kick in soon!

22/02/16 5:45am

I finally fell asleep around 11:30pm I would imagine, not ideal when my alarm was set for 5:30! The first day back is always a bit mental so I want to have plenty of time to set up my classroom and set up for the day. I was meant to go into work on Thursday but was far too ill to go. I've got my usual stiff, painful, claw-like hands that I get every morning. This obviously makes getting dressed, doing make up and eating quite difficult but they do calm down within about an hour. My legs stiffen overnight so the initial getting out of bed is extremely painful too. The first thing I do is take my medication, this helps with the stiffness as these include painkillers. There are plenty of people who do not agree with using pain relief but the choice I have is stay in bed and suffer, or take tablets and be able to get on with my day. I'm sure most would choose the latter if put in my position. If you are able to do it without medication, fab! I, unfortunately, am not. 

22/02/16 7:15am 

 I've arrived at work bright and early to get lots done in the classroom - being too ill to come in on the day I wanted during half term has set me behind so there's a lot of sorting/tidying to be done. My meds have kicked in so I'm feeling okay-ish. Time to get things sorted before our meeting at 8:15! 

22/02/16 10:45am 

That meeting was hard work this morning, I forgot to take a chair in and I hate asking for help/admitting I'm struggling so I soldiered on. My back was not impressed! I was in a fair bit of pain but the meeting was pretty important so I had to push it to the back of my mind and carry on. I haven't been teaching this morning, as an NQT (newly qualified teacher) I get extra time to develop my own teaching by observing other teachers etc. So I'm not actually teaching til after lunch. 

23/02/16 5:45am 

Wow yesterday got busy!! I didn't get to finish my "day in the life of ME..." So I'll continue today! I was really struggling with my temperature last night, no matter what I did, I could not get warm. I even asked my new friend from Florida if she experienced issues like this just to check I am normal! (Well as normal as I can be for me). I woke up feeling VERY stiff, I managed to drag my body out of bed. It felt like each of my limbs had turned to stone over night and I had to lift the heaviness. I realised last night that even an hour's sleep will turn my hands into claws, i thought it could be from not using my hands for the whole night but surely they should not stiffen to that extent in an hour!? Who knows. Painkillers to the rescue. I would not be functioning otherwise. I'm sure my body will settle down in a little while ready for another busy day ahead. 

23/02/16 12:10pm

It's lunchtime! I'm feeling pretty rubbish. My legs have decided not to participate properly in life at all. They are so stiff at the knees, making walking obviously very painful. I feel like I'm wincing at every step but hopefully no one has noticed. Getting up and down off little year 1 chairs is not helping! Every time I stand up from the tiny chairs it takes about 10 seconds to stop feeling like ill pass out. I have my compression socks on today to stop the blood pooling in my legs which is meant to stop the dizziness and pain when standing. It's safe to say it is is not working today. I have an awful tummy ache and feel very sick which I'm hoping is just my usual stomach problems and not the bug that all my class seem to have! I'm ready for my next dose of pain relief so I hopefully it'll ease up the pain in my legs a bit. I hate feeling like I'm just counting down hours til the next dose though. However, wish me luck! 

23/02/16 6:50pm

Just got home!! So much to do at the moment but I'm determined to force myself to leave at 4:30 every day from now on. My legs did not get any better. They got worse in fact. I was asked by staff members if I was having a bad day so I must have been walking strange! I feel like I went to the gym for 2 hours and was then told to run 10 miles. Add that to twinges, burning and being stabbed with needles over and over.  That's how painful they are. This is why it annoys me when people moan about pain from the gym. At least you have a reason for the pain ... I don't like to be bitter but it's frustrating at times. 

My temperature has been all over the place too, currently I can barely feel my hands as they are so cold and they're stiffening up. My stomach still kills but I don't feel as sick. I feel like I need to go to bed but my mind is in overdrive at the moment. I'm not sleeping great, partly due to restless leg syndrome (secondary condition) which is elevated by stress (got lots of it) and partly due to pain. I'm going to have some dinner, stick some rubbish on the tv and try and switch my brain off. Sometimes I prefer the brain fog (where cognitive function declines and I can't think of words/watch proper TV etc) to the overdrive my mind is in. I've sprayed my legs with deep heat to try and get some relief so hopefully that helps. Codeine hasn't and I don't really want to take any tramadol but we'll see how the evening goes. 

23/02/16 9:30pm

I'm shocked I'm still awake after how rough I've felt today. I haven't needed tramadol so I'm happy! I'm very stiff but comfy and snuggled up in bed. I feel sick again and my stomach hurts, sometimes the best way I can describe these symptoms are a hangover without the alcohol. I've always been a sickly person so at least now I have a reason for it! My back and neck are throbbing so it's definitely time to sleep. I am watching Step Brothers as I always have to have something on in the background to fall asleep to, ready for another (hopefully better) day tomorrow. 

By all means, this has not even bad a 'bad' day. I will try and do "a day in the life..." On a bad bad bad day too. 

I hope sharing my day has been interesting(?) and has given people an idea of what having a chronic illness like the 2 I have is truly like. It doesn't go away, it just becomes part of life. I would like to think I stay mostly positive about it and am always holding onto hope that one day I'll get better. 

Good night :) xxx

Half term = Valentines Day, ECG, London, Neurology appointment and REST, REST, REST!

Wow it's been a long time since I've blogged! I meant to at the weekend but it uses a lot of mental strength which I haven't had, plus I've been pretty busy! I can't even remember what my last post was about. I'm in a lot of pain today so I'm writing this quickly and I doubt I'll proof read so please excuse any mistakes!

It's half term and I'm having the loveliest week off. The first couple of days I rested (I think, I can't actually remember that far back)! Sunday was Valentine's Day and I was all set for a "date night" in the flat, we were going to eat lasagne, watch a film and chill. We got ourselves all dressed up and cracked open the prosecco, when a taxi arrived,  I got whisked away in the snow to my favourite restaurant!! It was so romantic and perfect. 

Then on Monday evening, Adam and I traveled down to my mum's in Essex ready for our day out in London on Tuesday. 

I had a doctors appointment on Monday morning, again she was very helpful and we discussed lots of things. I had my arms examined again and they are stiffer than ever and are still becoming weaker which is a bit scary. We discussed pain relief and how if my brain scan comes back clear then she will refer me to a pain clinic to discuss alternatives. I mentioned about my heart rate and she was very concerned and wanted this looked into before the brain scan. I had an ECG that day which came back clear but since the concern is when I am standing, that was not overly helpful and quite frankly a waste of everyone's time. The nurse who did it didn't listen to a word of what I said and when I explained the problem she just said "well we don't do those tests here" and did the normal ECG. 

Anyway, it was lovely to be at home! I love spending time with my mum and her fiancé and I had a lovely relaxing bath! I do miss having long baths since we don't have one in our flat. I bought some Epsom salts and gave them a try since I've heard great things about them helping with pain. Unfortunately it didn't help me, though I felt very chilled and relaxed afterwards. Baths actually make the pain in my legs even worse due to the heat. 

We had a long lie in on Tuesday so I could rest up lots before our day in London, which was absolutely perfect!! We got to London, went for afternoon tea in The Orangery at Kensington Palace before going on a long walk around the grounds - obviously I didn't walk, I was pushed! Then it was was off to the Shard which was amazing!! The view was breath-taking and we were so lucky to have such a clear night. After that it was straight to the Duchess Theatre to see "The Play That Goes Wrong", it was absolutely hilarious and I would 100% recommend it to anyone. Obviously I was feeling poorly but I dosed myself up and pushed my illness aside for the day and really enjoyed myself! 

We left Essex and drove straight to Norwich station on Wednesday to pick up my friend Caoimhe who came to visit for the day. She bought me a card and 2 donuts which was so so kind!! To me, these presents weren't just donuts, they were proof that she understands me and how I am feeling. I have been quite down and upset about my health so that gave me a big boost which I needed. We chilled out, went to nandos and to the cinema to see Deadpool. Adam joined us for the day as well which was fun and lovely to see them getting to know each other better too. We went for a quick drink before she had to get the train home. 

Of course, when I woke up on Thursday, I felt AWFUL. I'd pushed my body a lot for 3 days and it caught up with me. I needed just to stay in bed all day and give myself the rest I was so desperate for. The pain/exhaustion/nausea etc lasted all day but thank god for pain meds and anti-sickness meds that I could actually sleep and let my body recover a bit. 

Finally, today I had an appointment with a neurologist. He asked lots of questions about my diagnosis, the build up to diagnosis, things about my daily life, main symptoms (there wouldn't have been time to discuss them all!), then he did a physical examination on my limbs which was pretty painful but okay. He tested my reflexes which again are a bit too strong but he isn't overly concerned. He stabbed me with a pin to test my sensitivity, which HURT! And just when I thought things couldn't get more painful, he decided to re-do the 'tender points' test for fibromyalgia which oh my god I haven't felt pain like that in a long time - which is silly for someone who faces chronic pain on a daily basis! So obviously that confined my fibromyalgia diagnosis along with CFS/ME. We discussed the heart rate problems and he told me that it is a relatively common symptom for ME so that isn't a concern anymore and I am now waiting for the brain scan appointment which should be soon. This is to look for nerve inflammation and to rule out MS (multiple sclerosis). I can't really remember what else was said, it was an exhausting, painful appointment but it's a weight lifted about my heart rate. 

I can't believe it is Friday already and that I'm back in work on Monday! I have a bit of planning to do but the main focus this weekend is rest. I plan to get as much as I can before term starts again. I'm absolutely exhausted now and in a lot of pain so I'm going to sleep now. 

Sorry it's a long post, thanks for reading xx

People's Attitudes...

I'm back from Cambridge where I spent the day. I'm not feeling so good right now, I'm feeling very emotional I'm not going to lie. 

I've had a lovely day meeting up with my lovely friends. I bit the bullet and asked them if they could push me in my wheelchair, something I'd been quite worried about. I know this was silly and irrational because of course they were never going to say no but it's hard when it's still very new and daunting. It's also embarrassing, I hate telling people that I use a wheelchair at the weekends, that I can't walk for long, that I can't do what I used to be able to etc. 

I managed to get my wheelchair onto the bus and to the station all by myself and then onto the train. Quite an achievement and was feeling quite proud of myself. I got to Stowmarket and realised there was no lift. I was only pushing my chair at this point so I went to pick it up and was hit with the realisation that I couldn't lift it on my own. As this happened I heard the announcement for my train, the only one for another hour(!) and saw it pulling up. Only I was stuck on the wrong platform. I burst into tears and panicked. The man working told me to wait and he'd help but I didn't have time to wait. Luckily an amazing woman came over, grabbed my chair for me, ran ahead and stopped the train for me. I couldn't thank her enough and started crying new tears at how kind people can be to a compete stranger. 

It was playing on my mind after that how much I've lost some of my independence and that's pretty crushing. I actually rely on others more than I realised. Especially Adam. I missed him a lot and knew if he'd been with me I'd never have felt the way I felt stuck on that platform. I appreciate every little thing he does for me and I know I don't always show it but I do. I hope he knows just how much. 

When I got on the train at Cambridge, a lovely ticket man helped me get the chair onto the train and into the wheelchair space. I wasn't sitting in it but I was feeling pretty done in and needed help. A woman had her bag in the space so he kindly asked her to move it. To which she just huffed. He pointed out the sign and she said she was there first. I said I'd fold it and put it elsewhere and he said no, I had the right to put my chair there and sit in the seat next to it. She huffed and puffed, refused until I got upset and she finally stormed off with her bag. Left upset again, all because of the wheelchair.

I had a couple of appointments this week, both more helpful than any of my GP ones. The main thing (not the reason I went) I found out is I was told I am fit for work!! Even though I knew I was, it is amazing to hear after being told for months by my GP for months. 

Back to today. Despite having a lovely lovely day, laughing and smiling with my friends and feeling normal for half a day, I am always hit with the fact I am not my 'normal' self anymore. I am pushed around in a wheelchair, I never go "out out", I don't buy nice clothes anymore because I never go anywhere to wear them and have to make sure I take my medication at the right time. I also am stuck with crippling exhaustion, pain and many more. It isn't fair. 

However. What has stuck with me today is how truly kind *most* people are. I have the most amazing boyfriend, fantastic friends, family and supportive job. So even though I'm still feeling a bit tearful on my journey home, most are happy tears. 

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

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.

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.