Yup! Otherwise I’d be a hermit. Plus, very few friends can identify how much I’m in pain. My bff & my sister can tell by looking at me.. I have other friends & family who have learned the signs.
Mom can tell usually just by looking at me.. not always, but usually.. My sister is pretty good.. Her kids & hubby not so much – ironically I think the kid of hers that would recognize the best is her youngest, because he has seen me the most over the last few years.
My guy friend T has, over the last 3½ years learned quite a bit about how to read the non-verbal clues.
My BFF also has fibro & is sometimes a little too focused on her own fibro to catch my issues. Only reason I can gauge her easily is that she has an emotional response to her issues that I don’t even think she’s aware of.
My second BFF also has his own issues, and usually only sees me on better days.. I don’t think he’s even seen me at mediocre or worse in a long time..
Them there’s some of the Scouters I work with.. Raksha 13th & I have become good friends through Scouting & Rainbow I’ve known since grade 8 or 9, but through guiding & scouting as well. They are pretty good a picking things up.
There are other friends who are less prevalent in my life but even they can recognize some signs if I’m having issues
What I Can Do.
So, there is the basics of who I tend to see most, then the next thing is *what I can do*. Mind you the days when I’m seriously f****d up due to symptoms, I don’t talk to anyone unless I haveta Haveta HAVETA.
Now pain & other symptoms varyy from week to week, day to day, even hour to hour.. Fortunately in the last few years the hour to hour option seems to happen less and less frequently, but for a long time that is how I had to play it.
When my pain levels are super high, any communication is digital.. To everyone. If you’re lucky..
Digital Communication Only on my Worst Days, At Best
Next level down:
Mild exercise like walking my dog around the court
Have company over for low maintenance visits
Socialize for dinner with Mom & Dad
Exercise by walking the Dog Around the Court Is All I Can Handle Some Days.
As my pain levels drop, I can be more sociable in activities that require less interaction such as:
Hanging out with selects friends in a quiet environment, such as a campfire, living room, patio, poolside, dock.. This would be BFF’s, & T, for the most part
Walking around the neighbourhood
Watching the kids’ soccer games
Visiting the family cottage for a few days
Visiting the gym for a hot tub!
Hanging out with Friends, in Front of the Campfire, or Otherwise, Though we use Chairs – LOL
As the pain levels drop a moderate to low level I can usually do the following:
Karaoke
General.Cub Scout Activities
Marksmanship
Hangout with friends in a noisier, bigger, busier location like a restaurant or bar
Moderate exercise like the walks with my sister & the pups
cub Scout meetings!
Glamping at my BFF’s cottage
Concerts (depending on who, I may go on a worse day & accept the consequences)
Professional sporting events like the Leafs, TFC or The Rock.. & to a lesser extent, Argos, Jays or Raptors..
Concerts with Friends Are Always Fun!!
So assuming my pain level is low, there is a lot I can do. I can:
More strenuous exercise such as cycling
Visit the gym for Aquafit, yoga, weights, or the track. I had gotten in a few slow Zumba classes in before COVID..
I can Camp – not the glamping like at the cottage, but camping with friends, and even my Cub Scouts . In fact we were going to Camp Impressa for a year end camp earlier this month with my senior Cubs & the Scouts (See more in this post).. & I just went camping 2 weekends ago with T
Sporting activities like soccer with the girls or golfing with T
Some of the more physical activities in Cub Scouts.. Such as teaching how to put up tents, waterproofing the bedroll, setting up grey water, basic orienteering, limited kayaking/canoeing, etc..
The Pheonix. – Dancing at the club!
Hiking (like fairly flat, fairly short, nothing overnight – Second Marsh near me is a good example)
Roadtrip!
Easy Hiking with Friends
What I can not do.
There are so many things now that I would like to do that I just not in the cards. These are activities the I’ve either done or were at one point on the bucket list. This includes activities such as:
White water rafting. T wants to go – I can do the camping part, but not the rafting part
Backpacking/ Hiking. This includes longer hikes, more challenging hikes, or overnight hikes. I can not lug an air mattress through the wilderness 😄
Winter outdoor camping
Amusements parks – can’t do most of the rides, and way too much walking.
Skiing
Horseback Riding
Zip-lining (not sure I’d do that anyways)
Canada’s Wonderland, the Prominent Amusement Park in the Toronto Ontario Area.
What would you like to do that you know you will never do again?
Every year the inevitable happens. I manage decently enough getting ready for Christmas, pacing myself trying not to overdo it. Every year I end up failing miserably before the holidays end.
Some years I’ve managed to get through Christmas Day with a nap and crash afterwards. . Some years I’ve actually had to postpone Christmas from the morning to the afternoon and eventually this became consistent as I really get up any day before noon. I’ve even had two years where I didn’t do Christmas with my family or anyone just because my crash hit before the holiday.
The most common reaction is to hit my wall on Christmas Day in the evening… After I get back from wherever I’ve been.. Fortunately, with the improvement of my Fibro over the last almost 5 years, that is shifting.. Crashes are less severe and don’t typically last for week or more on end..
This year, I did well! Before you say that’s it cuz of covid & no one did anything, it’s not true. Christmas this year is not *that* different.
As per the norm, I baked cookies. I give these his gifts to friends, family & my pain physician. It’s not uncommon for me to purchase premade dough however this year I made two different types of cookies from scratch. I have one of those cookies I ended up making up 4 batches. I don’t know how many cookies I made in total but in the end I had enough for two’s cookie swaps with my Cub packs, 3 small baggies, of a half dozen, 8 larger bags of a baker dozen, & 5large bags for almost 2 dozen cookies. I also did up one package of two dozen Brier Rabbit cookies (that’s the recipe I made for of) for a friend of mine who specifically likes that type of cookie.. After all that, I still had some left over.. That’s almost 400 cookies this year.
Cookies From My Cubs
As I usually do, I also did my Christmas shopping in person. I don’t like doing a lot of shopping online unless I know exactly what it is like books. So I do gifts for my sister and her family and my parents every year as well as select friends including my best friend and her family This year I also got a few things for my brother’s family beyond cookies.. Plus stocking stuffers for my Mom and Dad.. So gifts for about 20 people this year.
Because of COVID my deliveries have been different this year.. but I have made them and have had short safe visits with friends. I stopped at my 2nd bff’s on Christmas Eve Day and we had a short safe visit. . Christmas Day was spent with my parents followed by a social distanced gift exchange with my Sister’s family. Afterwards, I stopped by another friend’s later on also for a short safe visit to exchange small gifts. Come Boxing Day, I had a longer, yet still safe visit with my BFF & her family. Finally, I saw another friend that evening and gave him his cookies & gifts..
So Boxing Day evening I hit my wall (My Wile E Coyote IG post shows it well). When I got home about 8:30, I crawled into bed & slept. I ended up overheating in my sleep but you can read more about that here.. Otherwise for the next 24 hours, I slept, only getting up so myself & Lilly could use the facilities and to feed her.
Since then my pain levels have been up and so has my fatigue.. I’ve done very little over this last week. I had a Cub Scout planning meeting on the 27th via Zoom. I’ve had a visit or 2 with Mom & Dad as they only live upstairs.. I fixed a mask, having to replace the elastic & add a third layer. I have watched TV, I have player video games on my phone & I’ve slept.
Do I consider myself bedridden? No.. I’m able to function.. I can get up & take the dog out & Ake myself some food and do liw energy activities. So why am I not doing more? Cuz if I do things will go downhill.. Right now I’m just keeping the course steady so that my body can rest, relax, recuperate and heal..
I’ve spoken to many people in the fibro community about this & it seems I’m not the only one deteriorating.. With over 3 months since many of our non-western medical treatments.. So, for most of us it’s only medications that we have access to, and if we are lucky, pain injections..
We are finding out how much our treatments help us.. Massage Therapy, Physiotherapy, Acupuncture, Osteopathy, Chiropractic Care.. For some it’s the ability to exercise when all pools and gyms have closed including even private facilities. I’m sure there are other possible treatments that I haven’t mentioned – remind me of what they are!!
Personally, I’ve lost physiotherapy & osteopathy, massage therapy, aquafit with other exercise at the gym, and the hot tub – God, I miss the hot tub.
But what I am missing most? Socialization..I’m still in contact with friends, and doing my scouting thing, but it’s not the same. I’ve only seen my best friend once through the glass door & subsequently only on Zoom. I haven’t heard from some of my Cub Scouts in months since we went virtual. There are three that despite attempts for contact, that we have not heard hide nor hair of.
Note: the above was originally written in mid-June before we started to re-open in my area. In the last week I have finally had social distance visits with my 2 best friends. I was glad to see them both.
I’ve also seen my RMT, I see my Osteopath next week. And even have my hair appointment with my Mom on Friday.
Now, some pools have opened and the splash pads. Unfortunately, some community & all private gyms like mine are not open.
This is a long read, but if you haven’t ever seen/read it, then it is most def worth the time. Because of it’s length, I’ve made it 2 posts. Fell free to use it for your own use if you so desire.
About Fibromyalgia
Being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too. The difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!”. I am not better, I am sounding happy. If you want to comment on that, you’re welcome. Being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing. Repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what FMS does to you. – Please understand that FMS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”, if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. “Getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, “You just need to push yourself more, exercise harder…” Obviously FMS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. If I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS does not forgive. – If you want to suggest a cure to me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and maybe discuss it with my doctor.
In many ways I depend on you – people who are not sick – I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the the doctor, or to the physical therapist. I need you on a different level too . You’re my link to the outside world… if you don’t come to visit me then I might not get to see you. … and, as much as it’s possible, I need you to understand me.
Fibromyalgia 
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