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.