Invisible

I wrote this post last week and forgot to post it, it is still relevant so thought I would post it now.
I was thinking today about why it is so hard for doctors, family, friends and colleagues to believe or understand the impact FMS has on a person. Thinking back to when I was Fibro free (which tbh seems like a lifetime ago) I too found the condition hard to fathom. The whole issue with the condition is that it is invisible, people don’t believe because they can’t see it!

Think about it…

Now we are adults, most of us, don’t believe in Santa, the Easter bunny or the tooth fairy because there comes a time in our lives when we are taught that seeing is believing. Well let me tell you, I don’t see it, but I sure as hell feel it!!

As a (to coin the term) Fibro Warrior you learn to wear a mask, this ultimately might hinder people’s understanding and attitude but it does stop awkward conversations. My mask is my makeup, a smile and the phrase ‘I’m fine’. I like to wear makeup, admittedly some days I’m too tired or rushed to apply it in the morning, and you can guarantee that if I’m leaving the house for work or to see friends on a bad day, I will plaster it on to hide the pain. 

Until you have a chronic, invisible illness (and I wouldn’t wish it on my worse enemy) you can’t understand the impact it has on everyday life. I have been with my husband for 7 years this year and he is so supportive, but even he has days when he still struggles with the idea of me being in pain 24/7. It is a constant battle to gain understanding, but should we have to use our precious energy trying to justify our symptoms?

Let me know what your experiences have been in trying to explain your illnesses?

Fibro and Me

Are you in pain now? Does it really hurt all over? You can’t always be in pain, can you? You can’t be tired!
Yes, yes and yes!!!
These are the sort of questions I get asked all the time and I know it can be hard to understand or believe that someone can be tired and in pain 24/7. I know because I was one of those people that asked those questions. My sister was diagnosed with the condition and I, like many others, found it hard to believe she was in as much pain and fatigue as she said she was. Boy was I wrong! Since I was diagnosed 3 years ago, I have now realised how wrong I was. After writing my previous post I thought it would be good to let you know how the fibromyalgia affects me. 

My symptoms:

• Widespread pain

• Extreme fatigue 

• Increased sensitivity to pain (hyperalgesia –extreme sensitivity to pain and allodynia – when you feel pain from something that should not cause pain, like a soft touch)

• Muscle stiffness

• Difficulty sleeping and poor sleep quality 

• Cognitive problems (fibro fog)- problems remembering or learning new things, problems with attention and concentration

• Headaches or migraines 

• IBS

• Dizziness and clumsiness

• Trouble regulating body temperature

• Restless legs syndrome – overwhelming urge to move legs due to pain

• Paraesthesia- tingling, numbness or burning in hands and feet

• Depression

• Anxiety