Okay, so I did it. I started a blog about my life, my chronically ill, not overly fascinating life. The truth is, for a long time I didn’t speak much about my illnesses or treatment (or lack thereof) for it. Then I started talking about it, but not all of it, not the raw bits, not in detail, not the bad days. So here we go *deep breath* I’m going to do it here, all of it. The good days, the bad days, the meds, the appointments, the treatment and the lack of treatments. I’ll talk about my illnesses and I’ll talk about my life, and I’ll be honest. You ready? Here’s a bit about me:
Right I’m Jen *waves* I’m 32, I’ve been married for 8 years and have a 6 year old daughter. Oh yeah, and I seem to collect chronic illnesses (well you can’t just have one right). I’m not going to list them all, as I’m sure they will crop up throughout this blog. The two that affect me most are Myalgia Encephalopathy (ME otherwise known as CFS *cringes as I hate that name*) and Fibromyalgia. I was diagnosed with ME when I was 21 although they suspect I have had it since I was 16, and Fibromyalgia when I was 22. In the time I’ve had these diseases at my best I was studying/working (I trained to be both a Midwife and a Social Worker which I left at 25) and at my worst I was bed bound for 18 months. My last big relapse occurred when I left social work and I haven’t really gained a lot of ground since then.
I am currently housebound the majority of the time, although I try and make it to do the school runs so my daughter has some normality (although this does involve other people as it is not something I can usually manage alone). Most days consist of waking (usually at 5am as wildchild appears to believe thats the ideal wake up time) and getting out of bed at 7am. Wildchild and I work together to sort breakfast and get her ready, dad picks us up and takes us on the school run and then brings me home again. I rest the entire time wildchild is at school, spend some time with wildchild when she gets home from school (in my bedroom which she thinks is simply amazing *thankfully* ) and once she’s in bed (usually by 6pm as, hello, 5am wake up) I go to bed too. Yeah…. that’s basically my life.
I’m lucky though, I don’t have to pump my body full of poison, I don’t have to be connected to machines simply to live. My illness is difficult, painful, infuriating, restricting but NOT terminal. I have my daughter, I have my husband and I have my wonderfully supportive family and friends (both in RL and online). I even work (allbeit only short term, from home and VERY few hours) but it makes me feel useful AND I am helping people at the same time.
So yeah, that’s going to have to be it for today and thinking too hard has made me tired and I have to be able to go and collect wild child in about an hour.
Thank you for joining me on my journey, spare spoons are always welcome.