This week I've hit one of those points where carrying on the fight has felt impossible. When it comes to it though, there's no easy way out of pain. I'd love to have a very long, undisturbed sleep. I only get a longer sleep if I've taken morphine and extra other medications, which gives me some horrible side effects and a hang over feeling for 24 hours afterwards. I also find sleeping difficult if it takes me away from Harry and Sarah. Guilt is an awful emotion and not one we're always able to control. If I could easily tell myself not to feel guilty about being in bed during the day/evening, I would. But sleeping when Harry is awake and leaving everything for Sarah to do on her own makes me lay there feeling guilty and unhappy. I wish there was a way I could stop that and just give myself permission to sleep!
Feeling defeated is so much bigger than feeling fed up. It overwhelms you and deep down you're searching for a way out. You feel as though the pain has beaten you and you have nothing left to fight with. Plus, it is a very, very lonely place to be. I'm lucky because I don't have to feel alone, I have people who care and people who will help me through this. Not just my family but also my friends. I find few understand it as much as my online friends who live with pain. Most have TN/Facial Pain and know the battle themselves. There is no doubt that TN is a disabling pain even though it's in the face. I find that very hard to explain to people who don't have TN or other facial pain disorders. I try, by saying that every footstep and every movement is another pounding feeling to the face. I imagine it's hard to understand that so much can be felt in the face. Only when you have pain there, do you realise that every single thing; talking, eating, moving, walking, laying, sitting, breathing can ALL be felt in the face.
Today I feel defeated. But I WILL hold on to strength and hope and I won't give up.
Image by Nikki Samuel
