So, Friday Night (16th June) I sent out a few whatsapp messages asking my friends for questions about Fibromyalgia. I wanted them to ask me questions they don’t know the answers too as fibro is a minefield of ignorance and misunderstandings. I mean they cope with being my friend, so I wanted to see what they had to ask me. I would like to thank the friends who asked me questions! They are brilliant questions!
How has Fibro shaped you as a person?
It has made me a grumpy, painkiller rattling wreck on a bad day. However on a good day it’s made me determined, stubborn and unable to slow down. That’s kind of a bad thing mind because a good day is always followed by a bad day because well, I end up doing far too much.
How has Fibro changed your outlook on life?
It has made me thankful for the simple things in life. Walking down the road in the sunshine, and not feeling too much pain. Managing to do some shopping and not bending over at the checkouts in agony. Washing my car, making my bed, keeping a tidy room… all these things I don’t take for granted because they are hard for me to do and when I’ve done them I also have a sense of achievement.
It has also made me angry because I should be able to do all those things without worrying that I won’t be able to walk tomorrow. But mostly I think it has made me more thoughtful when it comes to helping others.
What are your symptoms? And how does that affect you?
Fibro has a different impact on every person’s life so the symptoms I list can be different to what my mum or friends with the condition suffer with.
My symptoms are very much like having the flu. The aches and pains, with fever you can get when you have the flu is what a bad day with Fibro feels like. Combine that with a great big huge knot in the back of my neck (Tension headache), restless legs, not being able to think straight and no sleep and it affects me by me not knowing what the hell to do with myself.
So, all the symptoms are horrible but which one would you rather wasn’t a symptom?
I would keep the pain if it meant that I could get my brain back. Fibro fog is the worst of all the symptoms. It is exhausting. I would describe it as feeling like you are underwater but still breathing. I am always really motivated to work on my blog and other projects but never feel like I have my brain available to work on these things. So yes, I would 100% keep the pain of fibro is it meant I could think straight constantly.
How do you feel your life has changed since diagnosis?
I have this blog. I would never have had this without an official diagnosis because I would never have had the confidence. Also with my fibromyalgia diagnosis my mental health issues were also looked after for the first time and I have become more confident talking about my anxiety because since my diagnosis I have really developed the attitude… THIS IS ME DEAL WITH IT.
How does it feel when people look at you as if you’re healthy and can’t be that bad?
It annoys me because how do they know how I am feeling? I have a chronic INVISIBLE illness. Invisible tends to mean “can’t be seen” so they should know that by definition, they shouldn’t be able to see my condition. It annoys me that I could break my arm, be put in a cast and people would believe my pain but if I say how bad my pain is on the worst of days and just carry on as normal (no bandage etc) then I must be over-exaggerating, when the truth is I am probably UNDER exaggerating through fear of being judged.
How do you cope when your pain never truly dissipates?
I think sometimes I don’t notice the pain but it doesn’t mean it is not there. I just think my “I feel good” level is different to that of someone who isn’t in chronic pain! As I think about it now my right knee hurts, my teeth hurt, my right thumb hurts but none of that really bothers me because I’m feeling ok thought that might have something to do with the fact that it is nearly bedtime.
When was the last time you felt refreshed and not tired?
Ummmmm pass, 2007? Maybe… before I got insomnia and couldn’t sleep and since then it has all been a bit all over the place. I really wish I could wake up and feel like a human being, with energy and a Monday-Friday 9-5 job, look forward to my days off and make plans. But I can’t even make plans for tomorrow without fearing that tomorrow might be a bad day and I’ll have to let people down and then eventually they will stop inviting me out!
How do you feel when you know the doctor can’t change your diagnosis and you know that this is it for life?
This is an interesting question and since I know you don’t know me pre-diagnosis I am glad you asked me this. I really thought that because I had pain years before my diagnosis that when I got a diagnosis I would just brush it off and be like yes, I told you so and not be bothered by it. However, it was quite the opposite, I was gutted for a little while because the realisation came that it will never go away was kind of sad because I had lost that hope that I might wake up one day and feel normal.
Do you remember normal?
Define Normal? No, from as long as I can remember I have had pain. It was my knees when I was about 12/13 and I really don’t think that it ever truly went away. I think my normal has always included pain, just on different levels.
You’re only young. One day you’ll might decide to have a family. Or does it feel an impossible challenge?
Right now, that feels like an impossible challenge as I feel like I can barely look after myself sometimes. But based on people I speak to online and follow on twitter I know that it is more than possible, just not for a little while yet!
Being in constant pain and being tired can affect your emotions (from experience). How hard do you find it to a) deal with the mixed bag of feelings and b) explain them to others?
Dealing with a mixed bag of feelings is A LOT easier than trying to explain it to others. Sometimes I feel like I am quite lonely because very few people know what it is like to be inside my head. Sometimes the feelings can feel very overwhelming ,it can make life feel like all is lost and I will never get the future i deserve. Then on other days I feel like YES, I got this and Fibro won’t win!
Thank you for the friends who asked questions, I really liked them all : ) and if you have anymore (anyone..friends/readers…etc) then feel free to ask and i’ll do a part 2 😀