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
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