Recently a friend of mine invited my thoughts about fibromyalgia in relation to another friend of his who is facing possible diagnosis of this illness. With that in mind this post is structured as a letter expressing those thoughts. Just a reminder that I am a complete lay(wo)man, and have no medical training. I have only been diagnosed just for six months, with symptoms for about 15 months, and my thoughts are based only on my experience.
My experience of fibro is perhaps a little different from most because I have been unable to access any medication to treat the condition, or manage the pain adequately, because of drug interactions with medications I take for other health issues. That said, I know that so many people struggle with finding the right medication that it can’t really be seen as a one perfect solution for everyone anyway.
One of the first things I came to appreciate very quickly is that the experience of fibro is different for every person who has it. Just because I struggle with a particular issue, doesn’t mean your friend won’t. When I was first diagnosed I wanted to read everything I could (I’m just like that!) but quickly became depressed by what I was reading because either the problem was different or the solution was different. Further more I read, and heard, lots of horror stories, that I could have done without. Nothing seemed to fit.
I was very fortunate, at the time, to have a friend who already had fibro and she was incredibly longsuffering. She put up with many of my questions, including many “is this fibro or something else?”. She was very patient and supportive in my quest it fit into this new part of my life. I owe her my great thanks, because she assured me that this was not simply ‘all in my head‘.
Six months on I have created my own set of rules for managing my fibro, basically because doctors gave me so little information. Somehow it seemed like I was supposed to be cured simply by having a name for my symptoms. My rules are that, my rules… and your friend will no doubt form her way of managing, but if I can help in any way by sharing what I have learnt so far, then I’m more than happy.
1. My reality is what matters
I have alluded to this before but I know now that my reality of fibro is much more important than any doctor, pain specialist, or other sufferer can tell me simply because my reality is different. For example, I heard a lot about people unable to hold a pen and write their name but haven’t struck this myself (yet). The worst of my pain is from the waist down. I definitely also have pain above the waist but that tends to be restricted to my bad days. Initially I thought ‘well, I can hold a pen so I’m obviously not that bad‘ but I know full well that there are other things I can not do because of where my pain is located. It doesn’t make me better or worse. It simply makes me me. Actually today I can just hold a pen, but it sure doesn’t feel comfortable. Typing isn’t too hot either but I’m keeping going for the reason 4. below.
2. Don’t stop moving
The only advice I got from medical staff was to exercise and at the time it seemed like a joke. There are days I can’t walk to the letterbox but my doctor suggested I engage with a personal trainer. It seemed ridiculous and I admit I’m still working on establishing what is possible(it won’t be a personal trainer as NZ welfare wont’ quite reach that far). Unfortunately I know it is not much, but what I do know is that while I firstly thought the best thing to do would be to sit down and rest (after all, I am in pain and greatly fatigued), it is actually one of the worst things for me. It simply makes my pain worse and so I need to keep moving. Sitting stationary in a chair for three hours is not a good idea for me.
3. Expect the paradoxical
This goes in line with above. I can think something will be good for me, and logic will tell me it is, but so often I find that to be the worst thing for me. For example, I am regularly exhausted and think all I want to do is curl up in a ball and go to sleep. The only thing is that I will be woken in excruciating nerve pain in my limbs (especially after a day time sleep). It feels like an electrical current passing through my body leaving third degree burns. I can lie there thinking if I look down at my legs the skin will have literally been burnt off. It is that convincing, and I think too, that the best thing to do would be to lie perfectly still. Actually that’s the worst thing for me because then the nerve pain goes on. I have to move in order to break it. It sounds simple but there is a very real battle going on in my head over what is actually best. I actually struggle with this every time it happens (regularly). And actually I try to exist without daytime sleeps for this reason.
The other issue for me is that what might be good for my body is not necessarily good for my mental health, and I have written about this in Being ‘Normal’ With Mushrooms… For Mental Well-being. Because I have a mental illness this is particularly important to me, but applies to everyone to some extent. Sometimes I just have to break through the pain and fatigue so that mentally I continue to feel well.
4. Don’t let it define me
All of this affects every part of my life. And every day is different, and I won’t know what tomorrow will be like until I wake up. So it’s really hard to plan. I’m getting really good at cancelling things. Sometimes it seems it would be easier to just not plan anything but I’m not prepared to give up my life for this thing called fibro.
Enough of my life has been dominated by my health (particularly my mental health to date) and I’m not going to let it stop me from being me. So for me, life goes on. Sometimes, like today actually, my pain is such that I had to cancel an engagement.
Sometimes I find that people don’t understand that. They don’t get how, for example, it can prevent me from getting in the car and driving, but it does (especially if my arms are sore or I have fibro fog). I’m learning not to care about what they think. What matters is that I know my reality, and when I need to, I will cancel things but I’m not about to ‘cancel’ my whole life. I have fibro, but I’m not going to let fibro have me.
Of course these are my choices, and maybe it won’t be the case for your friend. She will gradually work out her own that fit her situation. I am happy to help in that because I know how much it helped me to have someone to whom I could direct my questions.
Wishing her well
- Being ‘Normal’ With Mushrooms… For Mental Well-being (infinitesadnessorhope.wordpress.com)
- The Sunshine Pill (infinitesadnessorhope.wordpress.com)
- ‘Sick’… Is Driving Me Crazy (infinitesadnessorhope.wordpress.com)
- Fibro Fear?!? (infinitesadnessorhope.wordpress.com)