Building strength in my body hasn’t been easy, but it must be working because last year I was able to go into the city and go to a bar, which was perfect because I was able to sit down. After four years of waiting, Saturday night was the first time I was able to go to a club, which was a big step because my main concern was not being able to sit down and having to be awake until 4am. This night was planned months in advance, we booked a hotel because we knew I wouldn’t make it without some rest and the hotel was less than 5 minutes away from the club, again for my sake. It’s annoying to plan every detail all the time, but it’s beneficial. Furthermore, Saturday was special because we were celebrating my boyfriend's 21st and while there were no expectations that I push myself, I personally wanted to stay until close.
On the way to the station he said to me that my health was more important than the DJs he wanted to listen to and I promised him that I would tell him if I wasn't feeling well so we could leave together. He's so sweet and caring that I wished and hoped my body would allow me to make it through the night because I never do city nights with him because I'm always too weak. It’s bad enough I miss out on events because of my illness but the fact he's willing to sacrifice his night for me shows his devotion and for once I just wanted my body to behave for his sake, but we were prepared either way. The club opened at 10pm and because we were there as soon as it opened, there were seats available, so I sat down straight away, I knew I’d be somewhat okay knowing I could preserve energy.
The other three people we were with are my closest friends and I swear I scored the jackpot that night. They were all willing to save my seat if I went to the bathroom, they bought drinks over to me, checked in with me every hour to see how I was feeling and someone was always with me, so much so they danced around me, and we had our own circle going on. I think Saturday was the first night I wasn't ashamed about my illness, nor did I feel like a burden. I was quite grateful. I was happy enough to be left alone if they wanted to migrate to the dancefloor or the second room, but they didn't leave me, I never asked them to stay either, so I am quite lucky I have amazing friends who understand my limits.
I sat down for about 5 hours and eventually got up and danced myself. My legs were fatigued straight away but I didn't care, it was nearly close time. Once the night ended and we got back to our room, I only had about 4 hours sleep, and we still had an hour train ride back home, somehow, I made it. Yesterday arvo after unpacking and having a nice warm shower I jumped into bed and began my resting progress. I did have a little nap, but the remaining afternoon I felt awful. It was at this point that I felt upset. Whilst I had a great night I felt the usual grief I do after I take precautions and still end up suffering anyway. It’s not fair that my boyfriend and friends can sleep most of the night off and take less than two days to recover, whilst my body can take up days, even weeks to recover from a big night out. I went to bed early last night and while I struggled to get out of bed this morning, I slept quite well during the night.
I have used today as a rest day and I have tried to look at the whole event in a positive light. My boyfriend told me he was proud of me because I took such a big step and it was a big step for me. I finally felt a sense of belonging to my peer group after years of isolation. I may not return to the city until next year, but either way I claimed a sense of myself again on Saturday and it feels great. Some days I hate that this illness is a part of me, sometimes I even despise my body because it controls everything, but at the same time I am fighting back, Saturday night is proof of that and I’m really proud of how far I’ve come to claim my body.
On the way to the station he said to me that my health was more important than the DJs he wanted to listen to and I promised him that I would tell him if I wasn't feeling well so we could leave together. He's so sweet and caring that I wished and hoped my body would allow me to make it through the night because I never do city nights with him because I'm always too weak. It’s bad enough I miss out on events because of my illness but the fact he's willing to sacrifice his night for me shows his devotion and for once I just wanted my body to behave for his sake, but we were prepared either way. The club opened at 10pm and because we were there as soon as it opened, there were seats available, so I sat down straight away, I knew I’d be somewhat okay knowing I could preserve energy.
The other three people we were with are my closest friends and I swear I scored the jackpot that night. They were all willing to save my seat if I went to the bathroom, they bought drinks over to me, checked in with me every hour to see how I was feeling and someone was always with me, so much so they danced around me, and we had our own circle going on. I think Saturday was the first night I wasn't ashamed about my illness, nor did I feel like a burden. I was quite grateful. I was happy enough to be left alone if they wanted to migrate to the dancefloor or the second room, but they didn't leave me, I never asked them to stay either, so I am quite lucky I have amazing friends who understand my limits.
I sat down for about 5 hours and eventually got up and danced myself. My legs were fatigued straight away but I didn't care, it was nearly close time. Once the night ended and we got back to our room, I only had about 4 hours sleep, and we still had an hour train ride back home, somehow, I made it. Yesterday arvo after unpacking and having a nice warm shower I jumped into bed and began my resting progress. I did have a little nap, but the remaining afternoon I felt awful. It was at this point that I felt upset. Whilst I had a great night I felt the usual grief I do after I take precautions and still end up suffering anyway. It’s not fair that my boyfriend and friends can sleep most of the night off and take less than two days to recover, whilst my body can take up days, even weeks to recover from a big night out. I went to bed early last night and while I struggled to get out of bed this morning, I slept quite well during the night.
I have used today as a rest day and I have tried to look at the whole event in a positive light. My boyfriend told me he was proud of me because I took such a big step and it was a big step for me. I finally felt a sense of belonging to my peer group after years of isolation. I may not return to the city until next year, but either way I claimed a sense of myself again on Saturday and it feels great. Some days I hate that this illness is a part of me, sometimes I even despise my body because it controls everything, but at the same time I am fighting back, Saturday night is proof of that and I’m really proud of how far I’ve come to claim my body.