It was Sunday that my right foot started hurting (more than usual) and over the next 24 hours the pain gradually crept up my body. Fibromyalgia was rearing its head and there is no medication for me, so I just have to ride it out. The electric blanket on the bed is good but I really need another one on top, and then of course there is the slight problem that eventually I begin to cook.
I wasn’t surprised that my fibro flared again. I was upset and not quite myself all weekend. My friend’s death on Friday had hit me more than I expected. Sometimes it really doesn’t do us any good to know it’s going to happen, because we never know how we’re going to react. For me, as I wrote in He Was One Of The Good Guys there were good memories of someone who had been a very good friend but overwhelming me were bad memories and hurt generated by someone who we both knew. That seemed to take over from the grief for lost friend, and to compound it I felt guilty for being stuck in my own memories and hurts rather than taking the time to honour my friend with our good memories.
This time I couldn’t seem to pick myself up, dust myself off and carry on. And that’s okay. What I find not okay is that I have learnt that when I get upset and down, then my body fights back with pain and exhaustion. To the point where I actually have forgotten my emotional pain, because I am now overwhelmed by physical pain. I’m sorry, I may sound down on myself but that it is so not fair.
So for three days now I have been backwards and forwards from my bed, to the couch, to the bathroom (although taking a shower is completely beyond me) and occasionally to the kitchen for more coffee and food supplies to keep me going (not that I have any desire to eat). It’s quite a life I lead. I have hardly even ventured far enough to the computer, and that leaves me feeling like there is something very definitely missing in my life. My ‘virtual’ friends.
Today I ran out of milk (a necessity for the coffee) and I had a birthday present for my (to be) nine year old nephew that needed to be in the post yesterday. I called for help. I find it hard to ask for help at the best of times. The only person I felt comfortable asking was my Dad, but trips to the supermarket from the after-life are, as far as I know, impossible… so that’s not an option anymore.
I got my milk, and J’s birthday present was dispatched (hopefully it won’t be too late) but I got some advice too. The person who came bearing milk knows about fibro and knows that it is fibro that is causing my pain right now. But I got told that when the sun comes out tomorrow (gosh, doesn’t that sound like a song?) I will feel much better. True, not a word of exaggeration.
A while ago I reblogged Robert Kalman’s LETTER TO PEOPLE WITHOUT CHRONIC PAIN and only recently I came across a similar letter, Open Letter to Normals. They are both pleas to people without any sort of chronic pain to not assume they know best and bestow upon us what they consider their wisdom. Lord save us! (BTW I have to say I actually don’t like the title of the second letter because I consider myself as ‘normal’ as the next person, but for now I’ll leave that matter and not get side-tracked.)
It’s simply miraculous how someone with no medical training, not even taking the time to ask me how I am or even what my symptoms might be, can conclude that when the sun shines my pain will be magically gone. My doctor doesn’t even know what to do to relieve me of this, but the assumption that the weather will fix this was too much. She left shortly after (thankfully because if I had any energy I would have got off the couch and throttled her).
I’m not sure what the weather forecast is for tomorrow but it is winter here in New Zealand and so I suspect it will be another grey, cold, damp day. That’s okay with me because I’m not holding out hope that the weather will fix this. But it does remind me that we need to be so careful in how we speak to other people. Regardless of whether that person has a chronic illness, any other sort of pain, or even if they are simply ‘normal’ we (me included) need to remember to put brain into action before putting mouth into gear.
My pain won’t be gone tomorrow, regardless of the weather. I am always in pain now. Maybe it will be less, maybe it will be more. No one understands fibro that well to be able to predict. What is interesting is that after the statement was made I was quickly aware again of the emotional pain I was feeling earlier in the week. Perhaps because I was not understood. And I was not heard.
And with that I’m going back to bed.
“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”
― Henri J.M. Nouwen, The Road to Daybreak: A Spiritual Journey
- Living with chronic pain – the reality. (halfwaybetweenthegutter.wordpress.com)
- The Fibro Fighter (and another Award) (infinitesadnessorhope.wordpress.com)
- Fibro Fear?!? (infinitesadnessorhope.wordpress.com)
- LETTER TO PEOPLE WITHOUT CHRONIC PAIN (kalmanrobert.wordpress.com)
- Open Letter to Normals (fms.community.org)
- Back to ‘Normal’ (fibrofella.wordpress.com)
- Letter to a Pain-Free Person (fibromodem.wordpress.com)
- Fibro Fear?!? (infinitesadnessorhope.wordpress.com)