Finding Support & Acceptance Sometimes Takes Time
Thoughts that go over my head: Will I feel like this forever? Will I ever feel better? I feel like I am waiting for my life to be over soon, if I don’t find the right treatment that will at least decrease my flares.
Having the right support around you is very important. It can reflect so much on how you feel and can trigger so many emotions. Having the wrong support around you can make you fragile, bring emotions you don’t want, stress you and your body, and most of all discourage your way to the healing process.
The journey began in a lonely place
At the beginning of this journey, it was very lonely. I still have days where it feels lonely and misunderstood by a lot of my surroundings. Comments and remarks can hurt so much. Judgment can be hard to move forward and keep your head up. That’s why having a support system that understands and listens is so important to be able to continue through this journey of chronic illness.
My family is my everything. Whatever I do, I do it for them. It breaks my heart that my body is not letting me be who I want to be, around them. I have to try and put on a brave face. I have to try and not cry another time, in front of them. I have to push myself through the pain and be the mother my children and husband deserve.
My husband is my biggest supporter, in this journey. It’s affected me as much as it’s affected him. I am thankful every day I have him in my life. We have been through so many ups and downs, but haven’t given up on each other. Even though at the beginning of this journey of getting a diagnosis, I felt alone going through the pain every day and trying to catch up on energy as much as possible. It has been a struggle to be able to function. Every time the pains come on by, it’s a constant battle of my mind and body fighting over each other to keep all the negative thoughts away.
Support now comes from my family
If you ask me now, who is your biggest supporter and who gives you the courage to keep going, it’s my husband and kids. On days the kids see mommy is not feeling well, they will come to lay down with me. On the days I am flaring up, my husband knows how to cheer me up. He brings me coffee in the morning, in bed. He helps with the kids. He brings me to my doctor's appointments and does errands when I can’t drive. He has been there more than anyone in my life.
But it took time to get here
He didn’t understand what was going on or how to be there. Slowly it changed, once I started showing him articles, joined support groups on Facebook, quotes, came to my doctor appointments, that helped him see what this disease is all about. There are times now he knows how to help me cope with flares, more than myself. It’s not only hard on us, but it’s also hard on our loved ones around us. As my husband says: “I wish I can take it all away. It hurts me to see you go through the pain and not know how to relieve it. “
Finding support can take time. Sometimes others need the patience to understand. Sometimes it’s not your fault if others don’t want to understand. I had to come to terms with, if I am having a hard time accepting this illness, then how can I accept others to do the same? It’s hard to understand something you haven’t been through. It’s hard to understand it, when I still have days myself, that I don’t understand.
Even though I don’t wish this disease on anyone, it has shown me so many things in my life. As I felt so lost, getting to know more about this disease and how to get through days of flares, I have learned how to be more patient and calmer. I have learned not to plan ahead over time and stress about it. I have learned to focus on the now. Yes, the now!!! I have also learned to be kind to those that don’t want to understand that this disease is f***ing hard, especially when battling fibromyalgia at the same time.
Some days are just unbearable
We are all fighting our own battle. Everyone’s story can look different from each others'. Pain comes in different ways. Sometimes low, sometimes one place, sometimes all over and for me, I get days where it’s just unbearable not even my pain medication helps. It can hit you in one place for some, and for others, it can leave you in a place where it’s so hard to get out of. It can leave you debilitated. I have learned to be kind to everyone. You don’t know behind that smile what someone is going through. The world can be a happy place, but we have to find our own ways to make it that way.
From the time I was a little girl, I had a hard time loving myself. This disease has shown me differently. We are all beautiful in our own different ways and that’s what makes us special. The strength it takes to get through pain every day, gives me power knowing I can get through anything challenging that comes in my way. It has given me more confidence, more self-love and most of all to appreciate all the little things in life.
Can you tell when a flare is coming?