It has been three months since I received my Fibromyalgia diagnosis and between then and now I have also found out that I have Joint Hypermobility Syndrome. In some ways it seems like time has gone really fast since I sat there and heard those words, like it was only yesterday. And other times it seems like it’s been a very long three months. I am trying to look forward now… to see past the darkness, I am trying to see silver linings in the grey clouds.
I have done a lot of thinking since my diagnosis, about parenting, about life, the universe and everything. I still feel that guilt that I mention in my first thoughts about my diagnosis, but it is not so overwhelming now. It still taints everything, don’t get me wrong, but I am working on it – and I am trying to convince myself that it’s not all my fault, and that I am doing my best. Not the best I have ever done but the best I can do, right now.
I am thirty years old and I feel like I have to learn a whole different way of living. I have to learn to slow down, I have to learn not to try to cram everything I used to be able to do without thinking, into my ‘good’ days. I have to learn that over doing things on the ‘good’ days is going to cost me the next day – really cost me. I have to learn how to live with this, to accept it. I feel like I am becoming a different person – I can’t do everything I used to be able to do, but I can still do some things, right? I guess it’s still early days so it’s ok to mourn for the ‘old’ me? To feel sadness, frustration and anger and on some dark occasions self-pity and self-loathing.
Medication is still a sore point. I don’t want to take it, I don’t want to need to take it… and maybe there is a small part of me that thinks ‘maybe I deserve to feel like this’ but I try not to dwell on that.
On a more positive note physiotherapy is going ok, I have another appointment soon and I am making sure to do the exercises I have been given. We are working on things that can help reduce the symptoms from the Joint Hypermobility Syndrome but I have been warned it’s going to be a slow process. I am starting ‘Pain Management’ too. The introduction session is at the end of the month and a couple of months after that a seven week course starts – I am hoping to learn a lot from it, hoping it will give me coping strategies, hoping it will help me get to know the ‘new’ me. These are my plans for the future, the plans that mean I will be able to see those silver linings and enjoy the breaks in the clouds, the breaks in the pain.
I need to look forward, not back, I need to try not to dwell on the person and on the parent I was planning and hoping to be. I have to take a different path from the one I saw myself on… I am trying to look forward and focus on those small glimmers of silver linings. Now that I can drive it means that Boo and I can do more things – without me using as much energy getting there and back. It gives us freedom, it gives me freedom And it’s proved to me that I can still do something, achieve something. I have Fibromyalgia, I am not Fibromyalgia…