I’m so tired. And the tiredness leads to anger, hurt, guilt.
I have no idea whether fatigue is something I just need to accept? Whenever I mention it to the doctors they look at me like I’m daft. “You’ve been through a lot” they say, “give your self a break”, “it all takes time”. Perhaps I expect too much of myself, but I really just wish I could be normal.
Every night, I get up once or twice to empty my jpouch, several times a night I wake thinking about whether I need to go to the loo. Since surgery I tend to have these vivid dreams, you know the ones where you feel like you’ve had a workout when you wake up? I also sometimes have stomach pains, butt burn and accidents.
So when morning comes, I just can’t open my eyes. I just don’t hear the alarm and Timm gets up with the kids. Every day. And the guilt builds… I wake up feeling so drained and exhausted that I can barely function. My limbs are like dead weights, my head fuzzy, my brain screams at me to go back to sleep. I feel lazy and guilty.
Timm leaves me to sleep as long as I need to. He never mentions it apart from asking if I had a bad night. But the guilt inside me is enormous, I feel I’m letting them all down. I feel like everyone thinks I am lazy.
I usually get up at 9am, a full two hours after I should get up. Some days I manage to get straight down into the office, some days I work from my bed. By midday I feel more energised and I try and get as much as I can done, but by 4pm I am flagging massively and could quite easily nap. Evenings are better for me, I feel more awake and often try and get housework done in this time. Then I’m usually in bed by 11pm (sometimes way earlier).
I don’t know whether it’s my routine that isn’t helping? Some nights, despite being completely exhausted I just can’t get to sleep and lay awake for hours.
Or I wonder whether it’s my diet? I have found I am now really intolerant to most vegetables and so my diet is quite restricted. The lack of vitamins and minerals worries me. I’m waiting for an appointment with the hospital dietician and have thought about asking to have my b12 levels checked. (People missing certain parts of the colon will have difficulty absorbing vitamin b12 and some need regular injections).
Sometimes I realise I don’t remember what normal is. My normal is so far away from other people’s that I wonder if my comparing myself to them is stupid?
When I say I’m tired, others talk of their tiredness too, and I think maybe I’m just not as tough as most people! Then I remember that my body has been through so bloody much in the past 18 months. That I’m missing an organ, that I’m learning how to use my pouch, that my body fights against me eating most healthy foods, that my immune system is knackered.
The thing I need to deal with the most though is the guilt. I feel like I need to apologise to Timm for how rubbish I am in the mornings. I feel like a bad mum and a rubbish wife.
I feel I need to explain to everyone that often I have a big front on. And that front is the mirage to tell you “I’m fine!” “I’m not weak” “I’m as good as you” “I don’t need anyone’s help”.
So when I’m seen on Facebook or instagram in the pub or walking the dog, know that it takes a big effort to do that, and I do it because I want to have the same abilities as others, I don’t want to be sick.
Know that every journey or trip requires planning to know where toilets are, a packing of wipes and underwear, a knowledge that using public toilets is an embarrassing experience because of the noise, that I’m using up valuable spoons to do that thing and will suffer for it later.
Please just have a little understanding that despite my brash, shouty, activist exterior I am still healing, still learning how to accept and use my new body and still dealing with the emotional trauma that the past 18 months have thrown at me.