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