I am back! I can’t believe how fast the last 6 weeks have gone! I’ve had hardly anytime to do anything other than work, let alone write, read or relax! I am currently sat watching my sister at her swimming lesson and it has given me time to reflect and think about the last few weeks. It is nice to finally be able to have a few minutes to write and it is at these unexpected times like today I am most productive in writing for my blog. I wasn’t supposed to be taking Millie swimming, I should be working, but I popped to my parents to drop a few things off and offered to take her as my mum had a fall and isn’t well.
I don’t get much free time to spend with Millie and it nice to see her back in the pool. My little sister is one tough cookie. Like my mum, my sisters and I all have fibromyalgia and Millie also has Chiari Malformation of the spine which leaves her in a lot of pain. It is heartbreaking that at 10 years old she can’t be like the other kids, she can’t trampoline, go on rides take part in certain sports and she get more tired than her peers. I find it difficult to cope with work and fibro but I can’t imagine being a kid with it.
The last few weeks it has dawned on me that I may be in pain for the rest of my life, that could be another 50-60 years! I have had fibro for 4 years and I am already sick and tired of it! I feel like I have to choose between my job, my family and my friends daily and I can only choose one. At the moment i feel like it is my job that takes up 98% of my time. I love my job; I have an amazing class, I enjoy my work and I have some very supportive and understanding colleagues but it is taking up all of my time. It makes me angry that this disability has taken so much away from me. I envy those who go to work and then still have the energy to talk to their husbands or make dinner, envy those who can meet up with friends and still do their work at the weekends. Currently my weekend routine consists of Friday night being in so much pain I find it hard to move, Saturday morning/all day crashing on the sofa too tired to move and then Sunday comes around and I spend the day working.
I hate the fact that to go out to the cinema with my friends on a Friday night means I will suffer until Sunday because my body can’t handle a week at work and then social activities. I hate I have to cancel plans to meet friends or go out with colleagues. I hate that it takes me longer to do things because of the fibro fog and fatigue. Or the fact that I have to get more sleep to try and compensate for being so tired. I don’t know how I do it but like I say when people ask me how I do it, you just do. I always find a way to fit in meeting family or friends or that extra lesson resource, normally at the expense of spending time with my husband. I’m lucky he is understanding but I hate that I always feel like I’m not there for him. I really need to crack the art of pacing and a work life balance!
On a positive note this half term has gone super quick, probably because I have had a never ending list of jobs to do. But the hard work is paying off. It will be half term at the end of next week and along with some relaxing I plan to work as much as possible to try and help free up some weekends to chill. I’m actually actually looking forward to having time over half term to rearrange my classroom and set up new classroom areas without the consequence of burning myself out!
Does anyone else work full time with a chronic illness? How do you do it? What strategies do you use? I have no idea how I will manage work and pregnancy when that finally happens!!