Fibromyalgia has a lot of misconceptions attached to it. What do you wish people understood about fibromyalgia?
I wish that people understood that I am in pain at all times. At times it feels like I have needles and even things as big as knives twisting in my muscles. My neck and back feel like I have fallen down stairs and it has never healed properly. My shoulders and arms ache and make it difficult to even lift a small saucepan with water in it on to the stove top. Sitting on a couch next to my partner is difficult when I try to rest my head on his shoulder, I cannot stay close to him because I have to constantly change my position while I am sitting next to him. It is very sad because I love him and I cannot show it.
It also causes difficulties for him because he does not want to hurt me. Hugging too hard is painful also. I have trouble sleeping as well, I need to change positions sleeping many times. I have insomnia most nights and I am lucky to get a few hours of sleep. The sleep is not restorative, I feel exhausted when I wake up and I am tired all day. They call that chronic fatigue syndrome, which seems to go hand-in-hand for many with fibro.
I used to have an amazing memory in school and now...it just makes me so sad and very frustrated because I cannot remember the easiest things. I will say to myself, Oh! I need to check something on the internet! I will grab my laptop and by then, I have absolutely forgotten what I wanted to look at on my laptop. Sometimes I can remember, other times, I just get upset and cannot.
Cleaning my home is difficult. I cannot push a vacuum cleaner, I cannot stand long to wash dishes. My partner does all of the cleaning unless I have a good day and can do one chore, taking as long as I need to but honestly he does the cleaning. As I am typing this, my hands hurt, my elbow hurts that is propped on the couch arm and I have to move away from the couch arm to the middle of the couch. I have difficulty shopping for food if the carry basket is too heavy, so I always go with my partner. He carries most, if not all the bags. I do carry light bags that have bread and other small items in them.
Slicing chicken for meals or vegetables like onions and peppers is difficult, holding the vegetable makes my hands sore. If I am cooking in the oven, picking up the pan with an oven mitt is difficult because the mitt is too big to get a good grip on the pan, so that causes pain in my wrists and hand, trying to balance the pan and not drop it. Milk is difficult to pour from large containers, I have smaller containers which makes it easier.
There are many examples of things that are difficult to hold in my hands without pain. Walking down stairs is tough, it feels like needles are in the bottom of my feet. My knees also ache and my hips start to hurt if I walk more than one quarter of a mile. I suffer from migraines, I have anxiety that stops me from even going outside at times. I have to talk myself into going to my physical therapy appointments. My Physical Therapist is very kind, it is not him, it is my anxiety, it stops me from leaving the house.
So basically I am hoping that people can understand that I am in pain all the time and just bear with me if I cancel plans, my pain is real.
Has any one told you that "you don't look sick?"
Yes, they have told me I don't look sick or I don't look in pain and it was hard to hear from loved ones but they understand now because it has been 24 years now. It is a bit easier to hear from strangers or friends that are not that close because I understand they are not sure what fibromyalgia is. Most people that do not know what fibro is will not understand that I am in pain or that I am sick. This is an illness, a chronic pain illness that has no known cure.
Tell us, who is your biggest support system while coping with fibromyalgia?
My biggest support system is my mother, my sister, my brother and my partner. They believe me and help me when I need them. I live in Australia now, an entire hemisphere away from my family in the U.S. so it is my partner's job to help me with everyday things. He is more than willing to help and sadly, he worries a lot about me. I also have a psychologist that is great for sharing my feelings when I don't want my family to worry about me. It is an outlet to talk to her and she teaches me about coping skills for my mental and emotional health. You must also be your biggest support, knowing that your illness is not who you are and that you can make your life one that helps you feel peace.