I’ve written many times before about creating a new self and coming to a place of acceptance about my illnesses and the situation created as a result. Today I feel like a fraud. This is because once again I am at the stage of having to accept my limitations.
I honestly thought I had done this before. I sat and talked with myself and accepted that I am just not the same person anymore. Then I got a hold of a little hope and I forgot.
We say once there’s life there’s hope and once there’s hope we can live but hope can be a dangerous emotion at times. You see its ok when the pain is horrible and it is clear that nothing can be done at the moment. Then when I meet a new doctor who offers a different perspective, or I use a new medication and it offers a higher level of pain relief…..I begin to hope.
I begin to believe that things will get better…………things are better. To be in the least pain you have been in for months is cause for hope. To have a new procedure bring relief is hope. To find medication that works amazingly at first is hope. Then something happens that dashes it all.
When the pain intensifies, or my body builds tolerance for the medication and I feel the pain more or when a few days/ weeks/ months after the procedure I am back where I started; all my hope disappears.
I know the social butterfly does not exist anymore- she’s gone. I know super mommy and super wife is gone. I know that I am just not able to do certain things anymore but in the back of my mind there is still that hope which pushes me to go on.
So the day when I can cook a few courses of a meal and bake gluten free and regular cake my hope is high. When I can stay out a little longer or do a bit more at work I have that hope in the back of my mind that I will be able to do it again tomorrow or next week. Then the day comes and I am stuck in bed in pain and its all gone.
I’m not the only one who has their hope dashed time and again. My husband and children are also impacted. Although, they live with me in this state they hold on to hope as if its a life boat and they are drowning. They see improvements and increased energy/ ability to perform a function and start to treat me as if I am well. Their requests and desires come to reflect that belief. I am then left to remind them that I am not well…….just as much as I remind them I have to remind myself as well.
So the deal is this: I am ill. I have no energy most days and I fight to push through. The deal is I have controlled substances to take in order to function. The deal is I will never be that girl again and I have to accept that. The deal is I may have to set more realistic goals for myself that I can actually achieve,
But I refuse to let her go……….I refuse to give up hope; so what do I do? I’m getting tired of the balance beam that I’m on. I feel like I am falling …………on one side is utter despair and the other is hope. Where does being realistic stop and letting go of hope begin? Idk.
More and more I realize that this chronic illness/ pain management dance is an everyday struggle. My positive disposition yesterday is not enough to last for today. Yesterday’s acceptance and working within the confines of the illness are not enough to cover today when I want to run and can only walk.
In theory I accept that she is gone………….in reality I miss her………..I mourn her.