The following is based on a status update from a friend on Facebook. She adapted it from FMAUK to define her own experience with fibro. I have adapted it again to define my own experience of living with fibro. Much of it is not my own words but I recognise every symptom, every pain and every insult.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain – My pain is not like your pain. It is not caused by inflammation. Taking medication does not help me- it might ease the pain a little but it never goes away. Sometimes it is in my joints, usually its in my muscles, sometimes both. On a good day, it feels like pulled muscles. On a bad day, it hurts to be touched. If you brush past me or poke me, I wince, it is nothing personal, it just really hurts more than you can imagine. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in activities, but I can’t. My body does not work the way it should. I CANNOT run or lift things. Sometimes it is hard to put one foot in front of the other. Please do not take this personally. If you saw me shopping yesterday, but I can’t help you today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. It may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
For me, this is the worst: not being able to remember that a kettle is called a kettle sucks. I’m not sure I will ever be able to finish my PhD despite being literally at the writing stage. Ive got two academic publications to my name; I’ve attended several conferences and i know the research I was doing was important. I simply can’t concentrate long enough to write it. I also have the basic outline of a non-fiction text that may never get passed that stage. That breaks my heart.
And, yeah, this means my grammar, spelling and vocabulary are frequently wrong. If you are one of those pedants who shrieks about misplaced commas, I suggest you find something else to read.
4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. I cannot walk in a straight line. I also fall over. A lot. I don’t think jokes about ‘being drunk’ at school pick up are funny. Mostly, I think you’re an asshole. I am shirking when I say I can’t carry al large bucket of water up the stairs; sometimes my kindle is too heavy to hold in my hand.
5. My sensitivities – FMS has been called the “aggravating everything disorder.” I am light sensitive but my biggest trigger is noise. When its bad, the noise is so over-whelming that I can’t differentiate sound. All I can hear is loud. Everything is extreme. I wear headphones to drown the noise out and sunglasses even when its raining.
6. My temperature – I cannot control my body temperature: sometimes I am freezing sometimes I am dripping sweat. It doesn’t matter what the weather is like outside, my body runs on its own internal thermostat which is, inevitably, wrong.
7. My mood – Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting pain and; sleep deprivation can cause depression. I may not be clinically depressed but not be able to live my life the way I want is horrible. The sleep deprivation is soul destroying.
8. My stress – My body does not handle stress well. If I can’t help you or am unable to come out or can’t commit to something, I’m not lazy. I cannot manage every day tasks like cooking, cleaning, eating etc let alone additional things. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight – I may be fat or I may be skinny. The medication makes me gain weight. Not being able to move makes me gain weight. Some days I cannot eat at all; others I cannot tell when I am full. Being over-weight makes the fibro pain worse so I do worry about what and how much I am eating. This worries me as we already live in a culture which fetishises women’s bodies and weight. I don’t want my children learning that from me too
11. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going. The fact that I function well some days doesn’t mean I don’t have bad days.
12. Illness – when I get a cold, it isn’t a “normal” cold. My immune system goes on strike regularly and a mild runny nose can result in my being in bed for a week. The last time I had the flu, it took nearly 6 months to recover properly. I get every bug going and, sometimes, it feels like I am always sick.
13. My uniqueness – Even those who suffer from FMS are not alike. What one person suffers is different to another person’s suffering. I have pain in my hips, one arm and my neck. Other people with fibro have pain everywhere. I can walk, although it makes me tired. Some days I can write and others I can barely keep my eyes open.
- Fibromyalgia Association UK
- Centre for Disease Control and Prevention (US)