I’ve been working my way through what feels like an endless flare and as each day goes by, it seems harder and harder to get through. Of course I still get up each day and as each individual day goes by, the day is harder to get through. It’s par for the course, really, but this has been a really long flare that’s been going on for well over a month. I’ve had mini-flares within the flare. Weekends let me know just how badly I’m really taking care of myself during the week by slamming me with the CFS. I wish I could give in to it, but 3/4 of the time I really can’t. When I do, it’s sweet heaven and drifting into sleep, pained as it is, gives me the only relief I can get sometimes. I’m still on a half dose of my Fibro med and have about seven days left on it before I can titrate up.
But now? During this past week specifically? The CFS is starting to kick in during the week. I’m having worse trouble in the mornings not just getting up out of bed (that’s always a given) but waking and shaking off the grogginess. I’m afraid it won’t be long before I can’t hear the blaring alarm that’s next to my head nor feel the vibrating phone alarm under my pillow. I’m feeling the CFS at work now. I’ve been successful in shaking it off at work, but I’m worrying about reaching a point where I can’t shake it off so that I might not be able to drive home. I already keep my cane close by and use it frequently. During my flares I use it nearly constantly. My balance is much worse; I can fall over out of nowhere for no reason; my sciatica gives me bursts of searing pain and completely goes out on me; I get other back pain and myofascial pain and other random pain that requires the support of the cane so that it helps ease things.
I was out at the store a week or so ago to run an errand and a lady came up to me to tell me that she used to use the same cane. It’s purple with colorful flowers all over it. I thought she was coming over to be nice. Then she said,
“I was at a therapy session one day and my physical therapist saw my cane and asked me why I used it. I told him why and his response to me was to throw it away and just stop using it. And do you know he was right? It was the best thing I ever did. You should do the same thing! It will be the best thing you ever do! You’re too young to use a cane!”
The smile that I’d had on my face must have faded instantly and I must have had daggers suddenly shooting out of my eyes, because the smile she had been showering me with faltered.
“That’s so nice for you. I don’t suppose you have Fibromyalgia like I do. I wish I could just throw away my cane. I’ve done physical therapy but it not only didn’t work, it made my chronic pain disorder worse. The cane helps me relieve some of the pain, but without the cane I wouldn’t be able to rely on my balance and I would fall more often.”
Then I saw a light bulb. I had been afraid I would see a slack jaw.
“Ah, I have a friend that has Fibromyalgia. My mom, God bless her, had it too. I understand. Bless you.”
Then her smile returned and I felt at ease again enough to return her smile. As I continued shopping I started to feel a different kind of unease and my frustration returned because I kept turning that incident over and over in my mind. As I’ve gone over the past week (or more) I’ve continued to think about it. I’ve been trying to figure out why it continues to nag at me. It’s more than the immediately apparent unsolicited advice. It’s more than the rampant incorrect assumptions being dumped all over me in that exchange that lasted all of 3-5 minutes. It’s more than how quickly a seemingly positive random interaction soured.
Then throughout the past week or so, I found that I was paying more attention to how people respond when they realize I’m using a cane or I’m in visible pain. When they can “see” my invisible disability by proof of the cane they’re very polite and smile and will give way. People sometimes will offer to give me their place in line if they see I have fewer items in my cart/basket. People are even more compassionate if I have my girls with me and they’re on their best behavior with me. If I’m feeling tired and I’m sure it’s on my face, again, people are even more compassionate. If I’m moving slowly, carefully, and purposefully, people are kinder and gentle.
But only if I’m smiling. Only if I don’t let the pain visibly show too much in my face and posture. Only if I can manage to control vocalizing unexpected bursts of severe pain that take my breath away. Because if I’m not smiling… if I look like I’m ready to cry… if people can see just how much pain I’m in and maybe even hear it then the discomfort is palpable.
As it turns out, my pain and discomfort and feelings of sickness due to the pain aren’t really about me. Of course not, why would my disability be about me? The things I go through are about everyone else. I’ve always known this on some level, but I didn’t realize until recently just how much.
I can’t just deal with my pain and try to get through it. I have to help others through my pain as I’m trying to cope with it myself. I have to reassure them and explain it to them. Until I thought about it, and thought about specific recent incidents in a new way, I didn’t realize just how much effort it takes to put up the appearance that my pain isn’t nearly as bad as it is even when it’s so bad that I can’t hide it and it breaks through and takes my breath away and I shriek. I realized that I could not only see the discomfort others feel over my pain but that I was actively pushing against it trying to care-take others’ feelings and worries about my obvious pain… even strangers.
I reassure people that I am, in fact, all right (fine, even) and “this is normal for me.” Because somehow, if “it’s normal for me” then I must be used to it and I must have a high pain tolerance. I do have a high pain tolerance, but come on. Pain is pain. Severe pain is severe pain.
People will ask with fear, “Are you all right?” and I can tell that they’re hoping I’m going to minimize the situation, brush it off for them. It’s rare that I tell the truth about how bad it is. It’s par for the course. It’s my normal, yes, and I have to get used it. I have to endure it. Even when my baseline pain increases, I just have to get used to it.
I have to say I’m fine because it’s expected. No one wants to hear the details of pain or what Fibromyalgia is like or what it means for my life and my family. No one wants to know what struggle it is for you to even be standing up right in that moment. You suddenly feel like you’re that elderly relative that’s asked how they’re doing and they give you the laundry list of every single ache, pain, illness, bowel movement, skin tag removal, kidney stone, colonoscopy, and family gossip because you see That Look come over the other person that lets you know they just don’t want to hear it.
Except I’m not really all right. I just can’t let anyone know how “not all right” I am because pain like this? Nonstop, constant, chronic pain that has severe flare ups? It’s taboo. I’m not really supposed to say, “No, I’m not all right.” If I say that then that implies, apparently, that I have expectations of other people to actually physically or verbally or emotionally help me and I shouldn’t impose that on people when it’s not their business and they don’t know what to do.
Maybe that’s what’s most uncomfortable for other people. It’s uncomfortable because they don’t know how to make it better (they don’t have to make it better), they don’t know what to say or do, they don’t know what’s appropriate because there’s no rule book. If someone else’s pain can’t be easily soothed because it’s more than surface pain (or what I call Less-Than-Labor-Pain Pain or for men to relate, Less-Than-Kidney-Stones-Stuck-In-Your-Urethra-Pain Pain that never, ever stops) this “look” comes over someone’s face. This look that says my pain is not only uncomfortable emotionally for them but it’s an inconvenience. I’ve put them into a position where they have no choice but to think about and deal with something that they haven’t ever had to think about before. I’ve put them into a position where they can’t actually help. I’ve put them into a position where they have to witness someone else’s pain and discomfort and yes, agony, and they don’t know the right thing to do.
What’s right is:
- Please, try not to make someone else’s disability be about you
- Please remember that those of us who have chronic pain are not lazy or making it up
- Please don’t judge us as drug seekers… we are trying to relieve pain that causes many people to commit suicide; and if we are on pain relieving medications, don’t assume that we’re addicts. If the medications work in some manner then they’re doing their job
- Please remember that we are not intentionally inconveniencing you no matter how frustrated and annoyed you may feel over our pain
- Please understand that we are not choosing this and if we had the choice we would make it stop forever and ever, Amen
- Please know that without a doubt, we have tried every natural non-narcotic remedy that we can think of because we are desperately afraid of the mere whiff of appearing to be a drug seeking narcotics addict even if the pain relief medication/s we take are not narcotics nor addictive
- Please remember that as uncomfortable as you are about someone else’s chronic severe pain, that other person is far more uncomfortable than you are 24/7
- Please treat people with respect… not just people that have disabilities, but all people and that way when you see someone that has a disability you don’t have to wonder how you’re supposed to treat them
- Please don’t apologize
- Please don’t assume that you’re required to help unless we ask you, but we always appreciate heartfelt offers of help
- Please be compassionate
Do I sound bitter? My apologies. This flare up over the past nearly-two full months is having an effect on me that’s not pretty. I’ve had ever-increasingly worse CFS due to the pain. I think I said that already. Fibro Fog is sort of chucking me on the chin here. It’s easy to tire because the pain comes on so badly that all my body wants to do is attempt to sleep in order to escape. Soon I’ll be allowed to titrate up from the lowest dose of the medication I’m on, which should help, so I pray that my insurance won’t take the stance that I’m a drug-seeking addict even though my prescription isn’t for a narcotic. You know, because they’re idiots.
After all, I have laundry to do.