I'm certain, no matter what chronic pain a person has, they have times when they just feel defeated. There doesn't appear to be a chance to recharge batteries as the pain is constant and debilitating. I get exhausted, from the lack of sleep, side effects from medications and from the relentless pain. So when I hit those defeated times, as I have done several times I don't know what to do with myself.
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
We all know that everyone is different. As individuals we respond to everything in a different way; situations, personalities, politics, religion, education, medication and yes, evidently we respond to surgery very differently too. Of course it isn't just our response, it is our experience. No two people will ever be the same when they have a craniotomy and surgery on something as delicate and intricate as a nerve. We KNOW this to be true and we also know that recovery will vary in every single person in the world even if they have guidelines and 'expected' results, we won't all fit within certain time frames etc. It is obvious that my surgery wasn't straight forward. Not least because there was so much bleeding during surgery, but also because of the serious complications that came afterwards. The physical, emotional and psychological effects of brain surgery aren't something you can plan in fine detail, even if you have an 'idea' of how you'd like it to be, we have no idea what will happen and how our actual complete recovery will be.
I had a conversation today with someone who is 4 weeks post op. I found some of what she talked about very familiar, the tiredness, the aches and pains and the reality that you've had brain surgery. But there were many aspects of her recovery that I couldn't understand and didn't relate to. Firstly, she is TN pain free! She has some pain from the surgery site, but the TN pain has actually gone. Also, her surgery and recovery went to plan and time frames were as predicted. I can't imagine how those things felt or feel. I'm 10 months on and I felt inadequate and found I was defending myself for 'existing' this way. I no longer leave the house, for which I felt criticised as another person pushes herself to do things for her child. I felt as though I was being told I wasn't trying hard enough and at this point in time, I can honestly say, I am.
Any joy that a person feels can be dented, squashed and belittled when we compare ourselves to someone else. It is easier said than done, but very wise not to compare ourselves to anyone.
Image by Nikki Samuel
