By Elaine Rush
Most people who know me are aware that I don’t do spontaneity very well. Not because I’m not totally cool and interesting, but because doing anything or going anywhere at all takes so much time and organization.
For example, if you texted me in the morning and asked if I wanted to meet you for lunch (there’s no way I could be up and out in time for breakfast), I would have to consider how long it would take me to get up and moving after my morning meds, then factor in time for a shower then a rest (that’s right, I will need a rest after showering and getting dressed as well as at numerous other intervals during the day). Then I will have to see if I feel up to it and find out if it’s close enough for me to get home from at short notice if I need to.
Other things I need to think about are: taking along medications and a water bottle, if it’s close enough that I won’t seize up traveling to you, if there’s public transport to the place we’re meeting, if I will need my stick or my walker and if I need someone to come with me. Then I would need to know how long I would be out, if there are seats, not too many steps, access to lifts and escalators, not too much noise or too many flickering or bright lights, if the floors are flat or uneven and if I have anything I need to do when I get back (because I will most certainly be too sore and fatigued to cook or wash dishes or basically do anything other than lie down). Also, as bad as it sounds, I need to decide if I want to do this enough to willingly and knowingly accept the ridiculously high levels of payback pain and fatigue that I’ll be subjected to for the next couple of days.
Quite a list, isn’t it? So much to think about that you will have gone out to lunch and be back home cooking your dinner before I have even decided whether or not to accept the unplanned invitation you so kindly extended to me. Please don’t think I am not deeply grateful that you care about and want to spend time with me – that’s not the case at all. I’d love to jump up and run out as soon as I get your call or message – my body just will not allow it.
So, from what you just read, you’d be forgiven for assuming that it’s better for me to plan ahead for meet-ups, outings and visits, etc. Wrong! Fibromyalgia is an awkward creature that is just never happy with me, no matter what I do. If it were a person, I’d have to divorce it for making my life so full of pain and difficulty and for just generally being mean and unreasonable! Unfortunately it refuses to vacate its most awesome premises and therefore I am stuck with it, like an intruder that never leaves.
So, here’s the thing about planning ahead with fibromyalgia – I never know how I will feel from one minute to the next, so even if we plan our much anticipated lunch date weeks in advance, there’s still a great possibility that I will have to cancel on you any time right up until I arrive. Sorry about that – I know you really want to see me because I’m pretty damn cool and all, but whether I like it or not, fibro is always in charge. And it’s bossy!
To try and keep our planned meeting, I still have to consider the huge list of potential difficulties and decide if I’m able to manage it all. I promise I am not making excuses or trying to avoid you, and I’m sorry that my chronic pain and fatigue make me such a high maintenance person to have in your life. I don’t want to be. Most of all, I appreciate you still wanting to try and be around me in spite of it all, because over the years, many people have given up on me, and that hurts. Please know that if I see you at all, or even try to see you, that it means you are important to me. Or that you owe me money. Kidding – I don’t have any because my fibro won’t let me work any more!
So there you have it. Can’t be spontaneous and can’t plan ahead either! At least that makes me seem all elusive and mysterious though, right?
No? OK then, I’m off for a lie down. Sending love.