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. 

A fun-filled, pain-filled Christmas

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

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

Our chocolate house.

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

Boxing Day.

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

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

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

All my purchases from Holland and Barrett!

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

IT'S CHRISTMAS

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

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

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

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

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

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

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

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

My yummy Christmassy snack 

Christmas is coming!

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

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

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

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

Me and my birthday cake 

All dressed up for the first time in months!

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

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

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

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

The beautiful girls Willow and Grace 

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

Have a lovely weekend everyone xx 

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

Evening all!

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

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

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

Here I am on the weekly trip to Tesco.

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

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

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

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

The lump on my wrist - any ideas?

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

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

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

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

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

Me and Adam as The Joker and Harley Quinn

My beautiful friends

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

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

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

My favourite

Thanks for reading! xxxx