I’m so torn. For me the answer is as follows:
It depends on my mood. And how a person makes me feel. And where I am. But mostly I don’t tell them unless I have to. In fact, since my diagnosis in 1998 (at age 14), I have lived in (minus my 10 semesters at college) the same small town. And, during my flare up last spring, I learned quite a few people whom I have known for the entirety of that time had no idea I have a chronic illness. I consider this amazing. They are either… very kind and gave me the benefit of the doubt on countless occasions, or very forgetful. Either way it meant a lot to me.
On the other hand, it means just as much to me to think of the hundreds of folks who know I struggle with health challenges. They haven’t made it their business to tell people. They haven’t made it their business to make a scene when they can tell I am not feeling well. Quite the opposite.
Anyway, back to the point. When I have to tell folks I just say it. Something stupid sounding, I’m sure. But I always say it matter-of-factly. “I have fibromyalgia and osteoarthritis.” I then typically downplay whatever symptom or situation has necessitated my discussing my invisible illnesses. And I am usually tempted to crack a joke. But I typically resist the immature urge. Because it’s not a joke. And I don’t treat it lightly (that doesn’t mean I act like it’s the end of the world, either).
Once I’ve told people I’m pretty open. I don’t inflict more pain on myself by trying to mask a limp as I walk (like I normally do). I am myself. And I don’t pretend to be otherwise. Frankly, once someone knows I feel more comfortable and less confined. WARNING: I find that this can be dangerous. I find that the fewer people who know about my health issues the more motivated I am to live well. (And I don’t mean well as in good, I mean well as in not ill.) The more motivated I am to level with the fact that there are countless things I can do with fibromyalgia. (And very few things I can’t do. For the most part I lead a very normal life.)
When people know about my fibromyalgia it is especially important to stay motivated and to refuse to excuse an effort that is inconsistent with my capabilities. I think this is the biggest struggle for me and my fibromyalgia… as I discussed here and therefore fall short of our purpose.. And, to be honest, I think it’s a healthy and helpful one. It is far too easy to fall pray to excuses (although there is plenty of room for reasons with fibromyalgia).
So whether your new friends know, or don’t, remember they can challenge us to find the limits of our capabilities and push them slowly. Kinda like stretching. But be careful not to over do it.
Basically… the two don’t mix. Luckily, with a positive attitude just about anything goes.
Today was incredibly cold here in my hometown. It was so cold it almost became humorous listening to myself sing myself a pep talk. “It’s a beautiful morning. I think I’ll go outside for a while and smile. Take in some of that [cold,] fresh air and…” You may laugh… but you know what? It worked. By the time I got to work I was in awe of the beautiful snow. I was refreshed by my walk through the parking lot. And I was SUPER grateful for the heat in my office (which I normally find to be rather insufficient). It was a great way to start the day.
The end of the day was a bit less energizing. Check out how bundled I am… even now, after I’ve been home for 5 hours:
G’night fibrofolks. Take care of yourself and your fibromyalgia during your winter weather. And remember, there’s no reason it can’t be fun and refreshing.
P.S. I suggest you not choose a day like today to prove to yourself you can walk a long distance.
As is always the case, getting over my pride worked well for me.
In addition to the improvements in my morale and grades (as discussed here), I was reminded how pleasant winter weather could be. I enjoyed running errands. I conquered the dread of going to work and/or school and hiking a mile to do the door only to be so exhausted upon arrival all I could do was return to my car and head home. I could go on, but you’ve had enough.
Before I go on I’d like to reach out to those of y’all who may have been like me… too afraid to admit that a disabled parking permit could have a powerful and positive impact on your daily routine and on what you perceive to be possible… quit being proud, and make use of the tools provided for us.
We (people with fibromyalgia) spend so much time being told there’s nothing that can be done to help us… So why do we hesitate when we know something will for sure bring us relief?
I did hesitate… and looking back it makes no sense. Just think about it, pray about it, talk about it (or whatever else you prefer to do to/on/at/about it) and then act. Or, if you decide not to act get over the idea and move on.
Now, I recognize, this may not be for everyone. Maybe you like to prove to yourself you can be tough (way to go!). Maybe you enjoy the exercise more than you dislike the pain (I’ll get to that in a bit). Or maybe (I pray this is the case) you experience little-to-no discomfort during long walks and have no use for a permit. If so, hooray! Be sure to give thanks for that blessing. I think blessings we don’t give thanks for have a way of wandering off, deteriorating, or turning into something quite the opposite.
I am certainly not trying to peddle an idea or prescribe a treatment. I, as always, am simply telling my story (mixed with a few things I think to link). I am not a doctor. Although… if you could earn a PhD in patientry, patientdom, patientology… or whatever… I’d be a likely candidate. I was going to say I was an (unpaid) professional patient, but I think the student analogy is better… since they both involve spending money and paperwork.
As promised, back to the exercise bit. Last October, my birthday gift to myself was to walk more. And when I say more… I mean even 100 more steps a day. So, I began wearing a pedometer… not a gugaphonic one. A cheap green one I got with a McDonald’s salad years ago. I got sick of the pedometer pretty quick, but now I have a habit of counting my steps (it borders on some sort of neurosis, I’m sure), especially as I walk around the office. Anyway… point is I started parking out in the parking lot at work, instead of right by the door. That alone was an additional 600 steps (or 1200 if I left for lunch) a day. I was thrilled!
Fall mornings are crisp and beautiful. The sunrise was a perfect backdrop to my morning walk into work. I’d button my coat. Ready for the day. Mull over the morning’s NPR discussion. Run through my to do list. All while walking briskly through the parking lot. (To be honest, some days it probably looked more like limping, but I was proud nonetheless.)
It was morning. I was walking. And anything was possible.
By the time I got to my desk my blood was circulating, my nose was chilly, and I was refreshed. Most of all, I was proud of myself for working my way back into a the sort of thing one does in good health. I was determined to fight off any flares by being active and challenging myself.
But, a wicked cold spell made its way into town in November and tempered my resolve. I was back to parking near the door. Now, this isn’t as awful as it sounds. In fact, I believe, it was wise given the nature of fibromyalgia. Walking 300+ steps in the freezing (and I mean well below freexing) cold would have been a pretty stupid way to kick off a work day. It was in my best interest, and that of my to do list, to minimize walking outside.
Currently I am working my way out of said habit. Despite the awful cold I am walking my way into the office from the outskirts of our parking lot. I admit, I am doing so mostly out of necessity, but it’s growing on me. I have to options… be early/on-time to work to get the close spots, or take the hike and not complain. Although I try each day to achieve the former I will not complain about the latter. I am proud of my progress. And exceptionally grateful for warm clothing. And trying not to overdo it.
So fibro folks… tell me about your experiences with fibromyalgia and walking. Do you take daily walks? How do you pace yourself? Are you able to *gasp* jog?! Do you use a disabled parking permit? I look forward to hearing from you.
If you have any questions about the permit process for US locations let me know. I’d be happy to help.