Warning: Post contains a photo of sweary balloons (really!).
I’m sceptical that any chronically ill person can actually achieve a good balance between rest and activity.
If I rest too much: I get fat. I dwell on negative feelings. My self-esteem plummets. I feel like I’m a bad girlfriend and all round waste of space. My flat is dirty and messy which makes me feel bad.
If I do too much: My pain is much worse. I feel fatigued beyond words. I am grumpy. I feel guilty that I am now unable to do anything all because I wanted to meet a friend for a coffee. Sometimes all I wanted to do was hoover or clean the bathroom.
Then I have to constant feeling of letting people down. Saying no to people sucks and cancelling on people sucks even more, but sometimes I don’t have an option. More than anything I want to go for dinner or drinks or see that new movie that came out. I cannot put into words how much I wish I could go to Go Ape (a high ropes adventure course) for a friend’s birthday at the weekend. But I can’t. I’ve told her I’ll come over for drinks at night – on the proviso that my body stops being a jerk by the weekend.
Last weekend I over-did it. It was worth it. We went to see J’s family. My Dad insured J on his car so that we didn’t need to use public transport – just another struggle when you’re this sore and your pain fluctuates so much. It’s a 2.5 hour drive away but it did me so much good to get out of Aberdeen, if only for one night. We went for lunch, played Mr & Mrs with his parents and his brother and his fiancée and drank prosecco. It was nice because J’s family get that I’m sick and his mum is just so caring and lovely. I woke up on Sunday feeling like I was about to pay for having fun, and boy I did. On the car journey home I was in so much pain and was getting stabbing pains in my chest and having horrid abdominal pains. Most people would panic at this but it’s not unusual for me so I took some paracetamol and waited it out.
I worry that people judge me for occasionally doing things that make me happy. If I post on Facebook that I met a friend for coffee, or when I had a birthday party because I can’t manage a night out… I am aware that people think that if I can have a birthday party, that I should be going to work. Well, they would be kind of right in that respect. But that’s because I don’t post about the times (most days) that J has to empty the dishwasher/washing machine because when I bend down I get stuck, or when he has had to shave my legs for me, or when I’ve not even managed to get out of bed. Sometimes I get stuck in the shower. Some days all I can manage is to eat, drink and maybe brush my hair. Sometimes I manage a shower but J has to dry my hair for me – he’s terrible at it. Frequently J has to do all the prep for dinner because my hands physically won’t allow me to chop an onion because they are so sore and swollen. That man has had to do *everything* for me at one point or another. It’s great that he is always happy to help but it also makes me so mad that I have to rely on him.
What people don’t know is that my friend that I met for a coffee is suffering with depression and I really was worried about them and that my sister and J did most of the legwork for my birthday party. I was still exhausted with the little planning I did do, though.
I don’t think there I a balance to be had. I think I just need to decide which activities are worth feeling like ass for the next day. And on days I can’t manage anything, I need to work on not beating myself up about it.