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?
I figure today is the perfect day to discuss this topic, as today July 24 is Self-Care Day,!
What is Self-Care?
Self-care, as defined by the World Health Organization, as what a person does for one’s self to establish and maintain health and to prevent and deal with illness. This includes hygiene, nutrition, lifestyle & activities, environmental factotrs, sociao-ecpnomic factors and self-medication. This includes physical as well as mental & emotional health.
So, basically, taking care of one’s self. & showing yourself some love.
But this is something us with chronic illnesses have a problems doing. We tend not to prioritize ourselves in the grand scheme of things. It is something we need to do to help ourselve help get us better. Not healed, but better.. I guess a more appropriate word would be improved (that is another blog post in & of itself)
So what to do to help ones self? There are a ton of things you could do. Here is a by no means exhaustive list of thngs to help improve your personal health, or self-care. A search on Google will give you additional ideas as well as suggestions for 30 days of self-care, a cheat sheet or a self-care checklist. I’m sure the list below includes information from these sources.
Self-Care Ideas
Take a walk
Meditate
Call a friend
Go out for a coffee/drink with a friend
Read
Warm bath, or hot tub
Yoga
Tale a nap
Dance or just listen to music
Sing
Keep hydrated
Sexual Acrivity
Compliment someone else (You’d be surprised at how well this can make you feel)
Plan kindness activities
Colour.. or Paint.. Do something creative
Knit, sew, crochet, macrame, needlepoint. Make something
Mani/pedi
Get a massage
Hug your kids, furbabies, nieces, nephews, grandkids
Stretch
Watch something funny – Tv show, movie, theatre
Plan a dream vaction
Plan what you would do if you won $25million
Take a trip to the salon to get your hair done
Get dressed up just to get dressed up.. If you look good, you feel good
Journal
Declutter a space on your home
Say or find posotive affeirmations. My mirror says “You’re Beautiful”. Who am I to argue wiht the mirror mirror on the wall?? 😉
Volunteer
Try something new
Ask for help!
Unplug. (This one is difficult for me)
Plan & eat a nutrional, healthy and delicious meal, bonus if its a new recipie
Hang with a friend
Watch funny videos.. I like Jeff Dunhan & Fliffy
Exercise
Eat dessert, but not every day!
Start a new, good habit
Create a bucket list.. A fanaticl one or a realisitic one, your choice
Pop Bubble Wrap!
Watch cute videos online – I love puppy videos, and the kitten ar cute too.. 🙂
Go for a drive
Deep slow breathing
Play with or cuddle with your pet
Learn a new skill
Practice positive selft-talk
Walk outside, feel the grass under your feet. (watch for glass if not in your backyard)
Forgive. Not for them, for you. it help you heal
Talk with someone, even a therapist or councillor
Remove negative people or groups from your social media
Family activity day
Make a list of what you are grateful for. Start with being alive, having shelter, and a full belly.. Go from there.
Sit in front of the campfire – Make smores, spider dogs, or mountain pies
Learn something new
Play a sport you enjoy, or watch it professionally
So.. Lots of choices as I said, There are alot of other options out there. Remember this activitiy, or lack threeof, is to make you feel better.
My Go To’s:
Meditate
Slow, deep, easy breathing – helps me sleep
Read
Drive – I love to drive.
Muisc – Listen, sing or dance to.
Volunteer (I’ve been a Scouter with Scouts Canada in some form or another for almost 20 years. – COVID’s made it a challenge)
Mani/Pedi – by myself or at a salon
Hair Salon – Love the head massage when she washes my hair
Sitting by the campfire, preferably with friends or the Cubs with approapriate libations & snacks
Massage therapy
Exercise, when viable.. Walks, jogs, Yoga Aqua-fit, arriba dance, etc.. dependng on pain & energy levels
Hot Tub. I prefer bewtween 99-102.. Can’t do hotter. 😦
Huggs 🙂 From wherever safely possible
Sex, with or without a partner
Go for a drive
Compliment somone – their hair, nails, clothing, shoes, etc..
Forgive
Colour and/or paint
Knots. Not a typical activity, but i like the challenge, plus im a Scouter, go figure.
Socialization with friends & family
Play or Cuddle with Lilly, my dog. ( See: “She Saved Me” post for more info on her.)
Call someone or at least check in for only that purpose, to see how they are.
Think or plan how i\I’d spend lottery winnings
& the obvious – Journalling. My blog, my instagram & facebook pages help me express myself.
What to Avoid:
Excessive or inaprropriate drinking or drug use
Maintaining toxic relationships
Argue excessively
Ovedoing an exercise routine
Stressful situations
Gambling
High-risk behaviours
Voilence to one’s self or others
Other self-destructive behaviours
Self-isolation (except as needed for COVID, but even then you can zoom or call or text) aka Social suicide
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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