It’s been 7 months since I started this blog so I thought I’d do a little update on my CFS/ME, it’s been quite a hectic 7 months to say the least, but I actually feel I’ve made quite a lot of headway with managing CFS/ME.
The main thing I’ve been able to adjust is my routine, 6 months ago I would struggle to get through the day without taking a 2 hour nap, obviously that was extremely inconvenient. Days where I wasn’t able to have a nap would usually result in a day or two in bed, I was so fed up of being so restricted. It took a while but I’ve managed to cut out napping, I still have extreme days where I’m pretty much bed bound which just comes with the territory. Cutting out those naps has honestly made such a difference, I’m not going to lie it takes a lot of organising of my days and judging how taxing an activity will be, but it’s made it so much easier to actually do things. Just to tackle uni work I made a whole timetable for a month and it has definitely made me a lot more productive.
I think it’s made such a big difference living with Cal, don’t get me wrong I loved my years living in a student house and I really miss seeing everyone every day, but there’s no way I’d have been able to manage my illness being that independent. Since living with Cal simple tasks have got a lot easier, Cal can help me with cleaning, cooking and anything really. I know none of my housemates would have minded if I had asked for help, but it’s an issue of pride, no one wants to admit they can’t do simple daily jobs, whereas living with Cal a lot of the time I don’t even have to ask him.
That’s something that really hasn’t got easier, although I know I need to ask people to help me with things but I still find it hard and struggle not to get embarrassed. There’s been several occasions where I know it would have been a lot easier if I had just said I have a disability, for instance Cal and I were at a gig which we’d had planned for months but it was the day we came back from Berlin and I was SO fatigued. We ended up having to leave early as I was in so much pain from standing and I felt horrendously guilty for cal and upset we’d had to miss the end. Annoyingly, there were a couple sat on stools at the edge of the venue and a lot of the time they would stand up to watch, and if I had just had the confidence to say I needed to sit down then I probably could have made it through the rest of the gig.
I’ve really tried not to dwell on instances like that but it’s hard not to get frustrated with yourself. In terms of where I am with my illness, I feel I’ve come a long way physically, sadly I get a lot more joint pain than before, however I can see such an improvement from where I was 6 months ago. I know I still have a lot of work to accept and manage this illness emotionally, but I can see everything I have managed to overcome since being diagnosed and that’s what keeps me motivated to keep trying.
See you next time pals x