SUMMER

As always, it's been a while since I blogged. I've been very busy juggling working, social life (for a change) and ill health. I honestly think I must be one of the only people in the country to be happy that the weather has gone back to rain. The heat and humidity made me very poorly and it's only now that the weather has gone rainy and cooler that I realised how much it was affecting me. I also had a very busy last few days of work which did not help my pain. First off, transition week was always going to be hard, having a new class is exhausting for healthy people, let alone people with chronic fatigue! I was very emotional saying goodbye to my old class, they will always be special to me because they were my first. Also they are an amazing bunch of kids so it was very hard.

In the last few days of school, we had the year 6 leavers prom, which was fun but exhausting. I left at around 9:30, way past my usual bedtime (tragic I know) and had to be in work the next day. We finished at 1 o'clock on the last day which was great and Adam and some friends came to Yarmouth so we could spend the day in the sun and try and catch some Pokemon (which I'll write about next). The following day my body decided enough was enough and I slept until 4pm, I felt AWFUL. We managed to go out for a bit in the evening just to get out of the house and play Pokemon.

Me before the year 6 leavers prom

I've seen a lot of opinions on Facebook of how 'pathetic' and 'immature' it is to be walking around chasing imaginary creatures. Maybe it is. However, when it has improved my mobility slightly - I can walk a bit longer and a bit further - and has stopped me worrying constantly about walking. I know my case is slightly different but maybe people are a bit too quick to judge. There are always things we do not know about people and I find the comments offensive and unnecessary.

Moving on from the negativity. I had the loveliest weekend (last weekend - 23/24 July) with my uni friends, two flew over from Ireland and others travelled from around the country to Norwich. It was great to see everyone and we packed lots into the weekend. On Saturday we went to the beach and chilled out catching up in the sun. After that we had a barbecue in the evening and some drinks. Everyone was going out in the city afterwards but I was already 99% sure I wouldn't feel well enough to join them. I had a red bull before we went but it didn't give me the energy boost I needed and by 10pm I was absolutely exhausted. Luckily my pain levels stayed fairly under control but I desperately needed my bed. Everyone else was getting drunk and I started to feel very left out. I tried to keep my spirits up and join in with the games but by 11/12 I'd well and truly had enough. We got a lift home and I slept soundly until 11am the next day. On Sunday me and Adam spent some time together in the sun having lunch and playing Pokemon. We went to the park to meet our friends before going home for dinner, then back out for drinks. This time I had a bit more energy and enjoyed being out. We were only having a relaxed drink sat outside a bar which is much more my kind of thing these days. On Monday my friend popped in to say goodbye and I spent the rest of the day in bed. Since then I have spent my days in and out of bed. I've been in quite a lot of pain and am needing co-codamol every day which is worse than usual. It was worth it for such a lovely weekend.

With my lovely friends on the beach!

I am very excited as I am going on holiday tomorrow!! I'll be sunning it up in Majorca for two weeks. Last year in Spain, the heat helped my symptoms a lot so I am hoping it will be the same this year. I am slightly apprehensive after feeling so poorly during our heat wave here. I spent yesterday with my brother, his girlfriend and my gorgeous little nephew before coming to my mum's to pack and rest before the flight. I'm feeling pretty exhausted and dreading the travelling part but I can't wait for the holiday. I am taking my wheelchair which I will use in the airport. What people don't understand is that it isn't just the pain and fatigue that affect me; noise, brightness, lots of people etc affect my symptoms. As flying will be hard on my body anyway, it makes sense to preserve as much energy as I can beforehand by not having to walk. At least then I'll have Wheel-iam (my chair) when I'm away, should I need it! I am well prepared for any symptom flare up and am hoping excitement will see me through. It's only a 2 hour flight so I should be okay.

My beautiful nephew

Taking my dog on a Pokemon walk

Wish me luck and I hope everyone is enjoying their summer! xxx

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

A step in the right direction

I've been writing this slowly, a bit at a time since yesterday morning. 

This week has been tough. That's the only way I can describe it. I've been struggling more than people realise but I keep covering it up. Probably not the best idea and it makes me more unwell but I hate admitting to others, and myself how bad I actually feel. 

I've been in so much pain, all I can say is thank goodness for tramadol! I hate having to take it but it allows me to continue with my day so I'll stick with it when I need it for now. 

A few good things have happened though. 2 weeks ago I had an occupational health appointment and the report got sent to my school, they recommended I focus on my teaching and other duties should be taken away, so since Monday I have no longer had to do after school club or break/lunchtime duty! This has helped hugely and has lifted a weight off my shoulders. I also set myself a New Years resolution - a bit late I know - that unless I have a meeting, I will leave work by half 4 everyday. So far I've achieved this! I decided it was time to put my body first and stop pushing it to the limit. I won't get better if I keep pushing. So instead of cutting work hours, I've come to with things to help. I used to spend hours sticking in children's work - the solution? Get them to do it themselves. 

I had a doctors appointment last week, I was dreading it as I usually come out crying and feeling like they have given up on me and can't/won't do anything else to help but this one was completely different. We discussed my medication and sorted those out, we discussed my reflexes (which are too strong) and muscles (which are too weak) and did lots of silly little tests, like co-ordination tests with my hands and legs. All of which I failed. My body isn't working right - which I knew - so I am booked in for a brain scan with a neurologist on the 19th February. I am absolutely terrified and it is playing on my mind quite a lot. They are looking for nerve inflammation which could explain why my limbs are so weak and uncoordinated. If there is no inflammation and my pain is under control (which it isn't at the moment) then I may finally be able to start physio. I've heard good things about this but I understand that while I'm in a flare, it is more likely to make me worse. 

I've been wearing a FitBit to measure my heart rate which fluctuates a lot and when standing is going up to around 130. This could explain why I get hot, nauseous, dizzy and unbalanced when I'm standing. It seems for once like we are actually making progress in looking at my individual symptoms which is good! 

I've been put on new tablets for my tummy problems and so far these have been great! I haven't had the muscle spasms which cause a lot of pain, I've still been bloated but I haven't been careful with my diet so that's why. 

Yesterday I woke up feeling horrific but I forced myself to sleep for another 3 hours and then I was actually able to enjoy my day. I did some marking, went into town with Adam and bought a couple of bits in the sale, then we went out for dinner and food shopping! So very busy in the end. My back started spasming in tesco but I've been wearing my tens machine again which helps loads. 

All in all, I think I'm coming out of the flare up and next week should be much better. If I don't cry in pain, it's a good week! 2 weeks until half term which is fabbbbbb! 

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.