With Fibromyalgia and other chronic pain you can’t always do everything you want, and we will always be limited in what we can do, but there is always something you can do instead – always an alternative.
While you may not be able to go to the amusement park with your friends/ family because the rides will hurt too much or because you can’t be on your feet all day or maybe it’s an all day thing that you can’t do or for whatever other reason, there are other things you can you. Maybe you can go mini-golfing with friends instead. Still a social activity, still something physical, still something fun and still hanging out with your friends. If that’s still outside of your wheelhouse, try just going out for a drink even just coffee to get out and be with those you love. If you are bedridden, why not a virtual chat?
You can apply this to all other aspects of your life. Certain things you can not do and may never be able to do again, but there are always things you can do.
I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition.
With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits put on me by my medical conditions. Like Christine, the author, I have a limited amount of energy that I can use each day. Some days I start with more energy, more spoons. Some days I start with less energy, less spoons.
I hope this gives you a new understanding about what it is like to live with chronic pain and chronic illnesses like ours.
My next post is about The Matchbox Theory which I think is actually a little more apt.
Hi. My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!
I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
Oh, yeah, I can make you feel anxious or depressed, too.
If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me.
I’m rolling on the floor, laughing. Just try.
You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ♥️
I have several friends who are fellow fibromites, women with fibromyalgia, each to varying degrees and varying function levels. I can speak about these issues with them, comparing yes, but also supporting each other. But I did have one in particular that would always work her pain in the conversation and make it sound worse than anyone else’s could possibly be.
This lady who I am no longer friends with works full time because “she can’t afford not to.” While when her & hubby constantly go out for dinner, go to concerts and socialize, and spend money lavishly, it’s no wonder she can’t afford it. But I’m curious as to how bad her pain really is if she works full-time and does all this other stuff. (Yes, I know that sounds a little judgey, but she makes me angry with this behaviour of hers)
She would berate me for not working, for taking disability. I am on both provincial and federal disability supports. Admittedly, I have in recent years, worked the federal, provincial and municipal elections. This is a single day, paid position. Yes, it is a long day. She thinks because I can do those one-offs, I should be able to work regularly. After those single days of work, I’m toast for up to three, four days later, even have been almost bedridden the first day after. How would I be able to work a regular job if I’m in too much pain & too exhausted after a day of work to even do the very basic daily activities of living?
Even tho we were good friends, she never saw me when I was feeling poor, and didn’t even talk much when I was, at one point, bedridden. So, while she is comparing, she’s not accurately comparing what my true issues are and even then, most of them are different from hers.
She doesn’t really understand that it is not a competition..
So i caught a bug this weekend. Stuffy nose, sore throat, head ache, body aches . Never did take my temperature.. & I noticed something .
The Fibro pain isn’t typically everywhere at once.. it’s usually once place or another, not everywhere.. But you add the body aches & every is now hurting.. yuck.
So I overdid it on the Civic holiday weekend and crashed as a result. I’ve been in a flare ever since.. This is a continuation of Crash and Burn.
As I said, Monday was about the same, pain-wise & still working on my sister’s project, but finally got a decent amount of work done on with this project. I think there was no improvement on Monday because I went to soccer.
Tuesday morning showed some more small improvement. That afternoon was my appointment with Dr Sithaparanathan at Neupath Pain Clinic (formerly CPM). Got my full shots & she gave me big trouble for over doing it. She asked my why I overdid it cuz she knows I’m pretty in tune with my body & it’s pain. I had lidocaine infusion on the Tuesday prior & the pain relief was still in effect which is why I didn’t feel any pending problems I guess the impact work off Sunday night/Monday morning while I slept.
So Tuesday afternoon was better, and was spent again at my sister’s.
I noticed significant improvement in weight bearing on Wednesday. The week prior, I was unable to pick up the sewing machine, even just to lift it from the table My brother-in-law had to come over and pick it up to take it to my sister’s. Today, however, I was running errands, one of which was to get the light bulb changed which required me to take the machine with me. I was able to carry it now. It was a bit of a struggle, but I was able to do it, take it out to the car. Yay!
As you can see, we are getting it done & here’s a view of one of her love seats in case I didn’t share before. This just shows the look we are going for with this completed loveseat.
I got some of my own stuff done that day cuz I was not at my sister’s doing stuff, tho several of my errands were related.
At this point, I was still having trouble getting moving in the mornings – usually afternoons right now. Pain levels are still higher when I wake and still having problems getting decent sleep Sunday – 6hrs, Monday – 6 hr, Tuesday after my shots was good with almost 7½, Thursday – 5¾hr, Friday – 4hrs.
While I’m *in* bed by midnight, I am not tired til at least 2am, some times up until 4am. There are also where I wake in the middle of the night wide awake. None of this helps my sleep. Thursday was bad with a combination of both. I was in bed shortly before 1am attempting to sleep. According to my Fitbit, I dozed off at 3:30am & up at almost 5, wide awake and unable to get back to sleep until 8 but even then for only 3 hours before being wide awake. And people wonder why I am completely exhausted some days.
So, overall, pain got better and better, but I was still getting exhausted each day.
i also began to have problems with my ankle &: my knee. Being on vacation, my knee has been fine.. was even good on Sunday after being off seeing since Thursday. However, being Wednesday of my week off, I’m pretty sure the peddle usage has aggravated my gout. I’m icing it & tossing it in my tensor when I’m doing any significant walking.
Let’s hope, with us not starting back up after the long weekend that it starts to heal up on its own. 🙂
The August long weekend was spent at home, the first time in several years, even doing covid. Typically I would be up at bff’s cottage, but she wanted the weekend starting her vacation to just be her & hubby..
Instead, I spent it in the GTA. Thursday night I went walking with my friend Tracy as my sister was at the cottage on vacation. We went 5.18 km according to my fitbit. Pace was 7.8 km/hr which is pretty good. Average speed for someone our age is about 4.5km/hr. So a good clip.
Friday was a quiet day, but Saturday started with my mom having a hissy fit about all my stuff in their space, so I spent the afternoon hauling any of my personal belongings & any cub supplies I had from the garage and into the backyard , either to my indoor space or my father’s shed. Between 2 & 6:30, my fit bit recognized three instance of exercise. 2 were classified as walks, but one was registered as sport. This tells you how hard I was working. That evening I went out to a bar with friends. Some were new to our group, so we had some ice breaker activities & lots of chat, getting to know new people. Then off to the dance floor until I left shortly before 1am.
Sunday registered a walk on my fit bit at 12 and I don’t remember what I was doing.. likely at noon I’m still dragging my ass outta bed,, esp when I wasn’t home until 2.. ( I realized layer it was 12 midnight & I was dancing).. I then took the pup to the dog park and we took the longer path. I did yoga for about a half hour & change. *Then* I went to soccer & I was exhausted by the end.
I woke Monday morning, thinking “Hmm.. I’m not too bad.” Then I moved. Boy was I wrong! 8/10, easy, & pure fibro pain. Not alot anyone can do anything for that.. Plus ongoing muscle cramps in my legs on & off until I got some magnesium on Wednesday, which helped..
So I spent the holiday Monday in bed, same with Tuesday & Wednesday other than a painfully slow walk, barely 1km/hr. I was however feeling a bit better each day..
Thursday was spent at my sister’s hanging out at her pool & started working on a project she wanted to do this month. Got in a couple of short walks, minimally faster than the days before.
Saturday & Sunday we also spent working on the project with multiple pool breaks .. I did go out with friends on Saturday which was nice. Then I again went to soccer on Sunday – am I a glutton for punishment or what?
So now we are one week later, pain levels still jumping at a 4-6/10.. depending on the time of day.. Sunday afternoon I was at a 4.. Probably why I went to soccer.
Monday was about the same, pain-wise & still working on my sister’s project, but finally got a decent amount of work done on with this project.
I’ve not had any tattoos prior to this year, so I don’t know what it’s like to have any ink done with a body that does not have pain. Honestly because I’ve been dealing with chronic pain issues since adolescent, I don’t think I could have even had the opportunity to do so.
I have 2 pieces done thus far. They are both rewards for my weight loss.
On my upper left arm, a little bigger than I was expecting, is my Scouter Koolaid tattoo I was given the name Koolaid by a patrol of scouts in my early 20s. So, basically is the scouting fleur-de-lis with the Koolaid guy super imposed on top. With the cub sign shown in his right hand.
This tattoo was actually quite painful. I had a hard time tolerating the pain. I was gritting my teeth the entire time but I persisted because I knew it was temporary pain and would eventually stop
On the top of the backside of my right shoulder, I have a butterfly. This butterfly is similar in style to a monarch butterfly but instead of the orange, black and white, mine is coloured inshades of purple and white. It is unique & really cool in that it is almost 3D in nature and you can see the shadow of it behind the butterfly. The text surrounding the butterfly reads “Fibromyalgia Awareness”.
This tattoo was significantly easier despite having more chronic pain issues in the area. For the majority of the work I was able to just sit and relax as he drew on the back of my shoulder. In fact, the upper lettering where I says “Fibromyalgia”, that actually tickled. Go figure There was one spot however that was a problem. Near the end of the work, the artist was adding white for highlights, he hit a flat mole on my back That sent a single big sharp jolt of pain through me. But that was the only pain I had from that one.
The artist, given that these two were my very first two and done right one after the other, he was not only surprised but suitably impressed that I only jumped that one single time. Apparently that is not the norm.
I do have one final one planned as my final reward for reaching & maintaining my goal weight. That one is going to be a collection of roses on my bum/ hip/ lower back in shades of bright pink & purple, maybe blue. The text to accompany that tat is “Neon Rose”, the online alias I have used since I was 16, so long long time ago.
When Lilly passes, I will be getting her paw print on me aswell in commemoration.
This weekend is Cuboree, which is our first in person overnight camp since February 2020. This means most of our kids have never camped in-person as a Cub. Of 21 youth, we have 2 who have.
Normally each group would be running independently with their own food and kitchen and supplies and such. Fortunately the Cuboree Committee decided to offer a meal plan The Scouters who are in the participating groups have planned the menu, supplies, equipment & food. The kitchen is being organized & run by council level Scouters who have no group . From us, they only require one Scouter from our group to help with food prep. Not me! Yay!
Normally for camp we would plan the menu, organize our equipment, shop for food and supplies as well as having food preparation done with the youth. We have, fortunately, none of that this year. We’ve been flying by the seat of our pants this year’s so I just gotta say Thank God The most prevalent leaders both have Fibromyalgia & the related cognitive issues so it’s been an interesting year.
& its supposed to rain on Saturday. *Sigh*
my apologies if this doesn’t make sence cuz it’s a busy week & my brain is now fried & I still gotta run the camp!
On this day we try to spread awareness of three debilitating and chronic medical conditions. I have all three of these conditions & I have to say, they all suck.
Fibromyalgia 
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