So I apologise for not blogging much if late. To be honest there’s not been much worth blogging about going on in my life!
Last week was ME awareness week and reading the stories of how people have been affected by this was heartbreaking. I am so lucky I can work and leave the house and enjoy small parts of my life still. I don’t ever want to get worse. However the smallest change to my body does knock me for six. I’m female so even my time of the month has had me sleeping for 14 hours or so in a day for the last few months. I am concerned any serious illness might be a breaking point.
I guess I’m still just struggling with it all. I’m back to working full time. Well trying to work more than my set hours to build my flexi up. Problem is, for every good week I have where I can build it back, it’s followed by a bad week where I undo some of the time I gain.
I still don’t know what to do with my work situation. The 5 hour a day trial worked really well and I felt like I could gain a bit of my life back on that schedule. This was helped by a new housework rota my partner and I started which was a huge stress relief. More on that later. Problem is, I just can’t afford to live working 25 hours a week. I might get my life back but I’d have no money to use to help me enjoy it! I could just about do a 6 hour day and feel okay, and that is about affordable but I think at times even 6 hours is too much. And of course because I live with my partner, I’m not eligible for any benefits to top up my earnings at 25 hours a week. Typical.
So this back and forth in my head is getting me down. And the housework rota? Well that started off well but soon we fell behind. We’re both tired and I’m still weighed under by having to micromanage it and also the guilt of asking him to do his chores on days I don’t feel up to doing mine. I can’t relax and do my hobbies etc. with the knowledge in the back of kind of all the tasks that need to be done around the flat. So that’s getting me down too.
And finally, I’m gutted to be missing oit on all this beautiful weather! I hate living in a flat. I’d lose a whole day by walking to the nearest park and spending an hour or so there. Wish I had a garden at the very least so I could meditate outside. I did that at my Mum’s house over Easter and it was so calming.
As for my treatment, well I caught up with my CFS Dr a few weeks back. She’s happy with the things I am trying though I do feel guilty I’m not trying enough. She’s booked me on a new course which will look at support and pacing etc. in more detail. That doesn’t start until June though because I’d rather attend it at a hospital closer to me than travel across the city. I think after the course then I think that’s it in terms of seeing the specialist. She’s giving me all the advice and tools I need and then it’ll be up to me to find out what works best and manage it from there. No magic pill, no tried and tested treatment that Drs can support you through because this illness effects everyone so differently.
It is, of course, completely typical that despite spending the last two days completely exhausted and battling to make it through the day, the night before the bank holiday weekend starts I cannot sleep. C’mon body don’t you know I have plans for this gracious 3 day weekend that very much don’t involve spending all 3 days resting?!
One can always find energy for kittens!
Now I’m feeling more recovered from my trip to Rome, I spent yesterday afternoon in Cardiff, doing some long overdue catch ups with friends, one of which is currently looking after three adorable kittens and their mum. Look how cute they are!
It was just the most calming thing ever and they were just so adorable, I didn’t want to leave them.
But left them I did and made my way to the pub for dinner and a few cheeky glasses of wine with another friend. I was absolutely shattered by the time I got home (about 10pm, so not that late) but today I’ve not felt as tired as I thought I would and after a lie in and a slow morning I’ve managed to make some Easter treats and do some small housework tasks.
My energy level success this weekend I think has been down to a little trial I’ve been running with my boss, where I am trying out different working patterns. Some elements of it has been great and has dramatically reduced some areas of stress and has helped me have energy in the evenings and weekends, but some elements have still left me struggling with fatigue and concentration. I have a few ideas of other things to try because ultimately I don’t want to have to reduce my hours at work, firstly because of the financial strain it will put on me and secondly because I don’t want to reduce my workload.
Trying something new this week so will see how that goes, and of course looking forward to the four day week and four day weekend for Easter.
I apologise for not updating much. Unsurprisingly even blogging can be exhausting. I’ve had some pretty busy weeks and I’ve got lots to catch you all up on, so will make an effort to do that soon!
Today I felt normal for a while. I don’t know why but it was refreshing to say the least! And by normal, I mean I felt awake and energised, even to the point where my eyes didn’t feel their usual heavy/tiredness. What was also surprising was that it came after I had such a long and draining day yesterday. Maybe I slept well last night because of it. But of course it didn’t last for long and the fatigue soon came back around lunchtime. Things at got a little…shall we say, fustrating at work, and I could just feel it getting to me so I called it quits and only worked a short day. Which I am pleased for because right now I am exhausted, and its only 9pm!
Been really struggling with helping my closest people to understand my illness. Its a common problem with all invisible illnesses but it doesn’t help that I can’t really explain it.
So last Thursday was the first of two workshops I have to attend as part of the Foundation stage of my treatment. After a stressful start (running for the bus in the rain no less) I found myself in a room of 15 – 20 or so other people all recently disagnose with CFS/ME. It was reassuring to see the variety of people there – men, women, some younger, some older. We discussed how lonely people can feel with this illness especially as it’s an invisible illness that not many people understand. I think its good my NHS Trust brings us all together for these workshops so we can realise we’re not alone. Its just a shame there wasn’t much of a chance for us to chat and get to know each other.