This post has alternative titles – ‘On the Up’ and also ‘Learning to Say No’.
It’s three months since I last posted and in many ways things are on the up – in good ways and bad. I’ve found a new job that I love. It’s probably the best job with the worst pay I’ve ever had. But I’ve managed to work full time for just over a month. It’s office based – the first time in 8 years I think! I’ve found someone to work with so I’m going down to 7 days in 10. I hope I can find a day of more lucrative work to make this economically viable.
I’ve managed to go in and work five days a week but the downside has been that I’m having to rest more. I’m even struggling to find the energy to go to yoga classes at the moment. I’m not playing the piano and I’ve not had the energy to try and start running and cycling again as I’d hoped.
At the beginning of May, just before I started working full time again, I found out that my prolactin levels were going back up on the lower dose of drugs (0.5 x 2 a week) – I was started to feel out of control emotionally again so I’ve had to double the drugs back to the level I started out on (1 tablet twice a week).
I was initially terrified of this because the first time round it meant 3 months of constant nausea, insomnia and fatigue. This time I seem to be tolerating them much better, except for the fatigue. I’m sleeping like a log and still coming home from work and napping like a log for 2-3 hours and most weekends I’m having to sleep the afternoons away.
I don’t know and have no way of finding out if this is CFS/ME because of going back to work or whether it’s just a side effect of Cabergoline. Or a bit of both.
My plan is to have a blood test this week and try a middle point of 1.5 tablets a week. That experiment starts this week.
Meanwhile I feel like my life is much smaller. It’s shrunk in the wash. There are lots of friends and family I don’t see because I don’t have the energy to travel or socialise.
But that smaller life feels like a more contented life. The stress and anxiety have gone. I love our new house.
I’m making new friends – like joining a book group, meditation classes and yoga. Social occasions are smaller – a couple of hours early evening in the pub, a trip to the cinema, lunch with friends or, on a good day, dinner out.
I’ve managed to walk up two of our local peaks in the past couple of months that I’ve not walked up in at least 18 months. (It’s uplifting for the soul but has unpredictable effects on the body.)
The tiredness feels like a drugged tiredness, like I’ve overdosed on hayfever tablets, and not the aching, can’t walk up the stairs, can’t remember words tiredness. Most importantly for me my brain is 100% back in gear. I’m reading voraciously and really enjoying the mental stimulation of work.
But what’s making me sit here wanting to cry on a Sunday morning is the number of times I’m still having to say no. A friend has just asked for a favour for her child. I explained I was tired but she said, maybe when you’re less tired. But what I want to scream is ‘NOOOOOO’.
There isn’t enough space in my life for me at the moment. I want to reclaim all the things I love doing:
- I want to be able to prove I can hold down a job and earn enough money to support myself instead of always being scared that we won’t be able to pay the mortgage and bills.
- I want my job to pay for me being able to enjoy the rest of my life, not something I pay for with energy credits.
- I want to have the energy to walk the dog every day – and not just round my 20 minute flat morning loop. I want to be able to go back up hills and celebrate the view.
- I want to be able to stay out for a whole evening with friends without having to spend the next day in bed.
- I want to be able to invite people to stay in our lovely new house and have people round for dinner like we used to do.
- I want to be able to say yes to weekends away with friends and family.
- I want to get back to regular yoga classes that I’ve learnt to love and cherish.
- I want to start playing the piano again.
- I want to be able to run again and get back on my bike.
I started out writing this blog because I felt like I was no longer me. Now I have rediscoverered me. A better me. Now I just want more of me. And that means learning to be at peace with saying ‘No’.
iamnotme 