Archive for the ‘Tips Tricks Helpful Workarounds’ Category

Tips – Avoid Negativity

August 9, 2022

Always try to avoid as much negativity as possible in your life. Most of all, whatever makes you laugh or feel happy, do that.

So there are people in your life who put you down, disregard you, ignore you, are demeaning to you or don’t believe you These are the people you cut out or limit, if possible, from you life.

Activities that you can’t do, don’t want to do but are pushed o you, are having extreme difficulty doing. These are activities you cut out or limit to the best of your ability Unfortunately, single people can not just stop doing dishes or laundry unfortunately. 😅

Hang out with people who truely care and support you. My sister is one of those people. I see her usually twice a week. We go for a walk (yes I enjoy walking) and chat about her, about me, about family, about mutual interests, about friends, Just life.

Do things you enjoy. Sometimes they maybe hard, but if they are worth the effort, do them to the best of your ability. I like to read, so I will grab a book and sit outside (sometimes in the sun, sometime the shade) for an hour or two and loose myself. Something that can be difficult, but worthwhile, is my Cub pack. I admit I do tend to overdo it sometimes, but it brings me & it brings the kids (well 99% of them) joy, fun, exercise, learning and an appreciation or nature & each other.

Trifecta to Being Productive

July 8, 2022

I find there are three health benefits of being productive. I’m not necessarily talking about cleaning the whole house or an equally large activity. Even something smaller like getting X amount of laundry or dishes done. Something manageable but productive but nothing that is too much.

After getting something done & done well, I feel three things:

  1. More awake and alert
  2. More energetic
  3. Less pain

Additionally, I feel better about myself and accomplished as I’ve set a realistic goal & reached it.

Tip – Rest, but move

June 28, 2022

No matter what you do, absolutely rest when you need to. *BUT* later, try to keep moving, even if it’s just a little tiny bit. I’m not talking a rub or walking around the block, but maybe walk in the backyard for a few minutes every hour or two, just to keep you mobile & your muscles from getting too lax. .. Do not to overdo it or try not to. Listen to your body..

Burn the Bras!

November 12, 2021

No woman can say they love all their bras. In fact most women *hate* their bras.

With some women with fibro, especially bustier ladies like me, can not wear a bra.. We have a low tolerance for the discomfort from the shoulder straps. Yes, they dig in for every busty woman, but because we have chronic pain, we tend to feel this sort of thing more keenly.

Bra Straps can Cause Irritation, Redness, Chaffing, Friction, Bruising and Pain

The underwire is another deadly aspect of many of the current styles of bras. Yes, the wire end are rubberized to protect us, but they still jab into you. I had one that was so bad that it started ripping through the material. The smartest thing I did with that bra was to remove the underwires.. It was a whole lot more comfortable after that.

Underwires Severely Suck

Sometimes even just the strap around the ribs can be very painful. This goes for sports bras or short tank top styles aswell. I wouldn’t be surprised if that pressure is agitating a form of costochondritis.

Bands on Bras Tend to be Worn Too Tight, Mistakingly Thinking it’s Better Support Its Not & it Hurts

One last thing is that so few women are wearing the proper size of bra. And out size does change. Here is how to measure yourself for a bra:

  1. THE BAND: Measure around the body directly under the bust while wearing a bra. Round up to an even number if necessary. For example a measurement of 42″ gives a Band size of 42, but a measurement of 43” + 1”(rounding up) gives a Band size 44
  2. THE CUP: Measure around the fullest part of the bust. This is the bust line measurement. The cup size is determined by the difference between the bust line measurement and the frame size.
What is the Difference Between Your Measurement Under the Bust and Your Measurement at the Fullest Part of Your Chest

Food Choices with Fibro V

September 14, 2021


Gluten is a protein found in rye, barley, and wheat product

Celiac disease is an immune reaction or intolerance to eating gluten, occuring typically in the small intestines It is a condition that overlaps with FM in some people. There is no reason to eradicate gluten from your diet if your doctor diagnosis you with gluten intolerance.

Some foods may impact you differently, even between grains. At home, you can try to see whether a few or all of these foods disturb your FM symptoms, by removing them one by one and keeping a journal to note any development.

Remove old-fashioned grains, breads, and pastas. You can substitute gluten-free replacements, such as those prepared with corn or rice. Also notice many marinades, sauces, and even candies may include gluten.

Breads are a high source of gluten proteins.

To see whether a few or all of these foods disturb your FM symptoms, consider removing them one by one and keeping a journal to note any development. If you find yourself cutting them all out, consider testing more extensively by utilizing a full elimination diet. Start with plain bland foods, adding a new food every few days and journalling any issues and in responses to what. Versions of this diet can be found online. Additionally, talk with a nutritionist. They can help you set up or improve a fine healthy diet that will not cause both the gluten reaction or for your fibro to flare.

Camping with Fibro

August 6, 2021

Yes, I can go camping with Fibro. It borders on Glamping, but I’m still in the outdoors, in my tent & cooking out on a stove. And yes, I have gone camping twice this summer, so far with at least one more weekend planned

I have had to make many modifications to how I can camp.

I am no longer able to go backpacking. I would not be able to handle the weight I’d have to carry mile after mile.. In my teens, I had gone up to the back country of Algonquin, spending several days out in the wilds with friends. That’s not happening anymore. The mind is willing, but the body’s not even gonna consider it! Lol.

I have had to upgrade from a 2-person hiking tent to a a 4-person, 3-season tent. I can no longer sleep on the ground, on thin mats, bubble pads or wood flooring like at Camp Adelaide. I now have a double high queen size air mattress that I use. I have a fitted sheet on it & depending on the weather 1-2 sleeping bags & my Lilly blanket. I also have a pillow that I use exclusively for camping.

My camp setup for virtual Cuboree

I have borrowed a camp stove from one of my cub packs (yes, the pack knows). It connects to the smaller green propane tanks, not a big 20lber. It is not one that requires you to prime it, cuz I find that one difficult. But also does use the huge tanks either so I don’t have to move that either. In addition I recently purchased my own stove used. I still need to clean it & test it tho.

I can light a propane lantern both on the green tanks & the big white ones. I’m lazy & cheap so I only use a small battery-operated portable one & my handy dandy flashlight. Blessed with good night sight, I don’t usually need a light source to sneak off to the bathroom at 2 in the morning.

I recently purchased an small indoor/outdoor table to use camping & at in-person & outdoor cub events. I am not sitting on the ground to cook or prep. With COVID, we can not share the picnic table with others right now, so I need my own table.

As some of y’all know, I have a long sleep cycle, and I’m sure your curious how I do that camping. Easy: ear plugs, & sleep mask. With my Cubs, I have our SiTs do breakfast, but otherwise, I suck it up. I know I will crash out during the week, but it is worth it.

My pink sleep mask (I have 3) & a pair is standard orange ear plugs.

To sit, I bring lawn chairs. My butt is too big & my balance to horrible to be able to get in an actual camp chair, handmade or store bought. Add to the fact that they are barely off the ground, with some I’d have to get on the ground to get up! Lol

This is what my current campfire chair looks like, but with thicker wood .. Made it in Rover Scouts.

Swimming? Heaven! The water is a blessing. Yes, not everywhere has water, but I camp at my bff’s cottage so there’s water there. Our cottage is also on a lake.. I enjoy the cool lake as it’s refreshing, especially on warm day.

I make sure I take all my medications, as prescribed at the appropriate time. I also bring sufficient extra medications, especially the PRN meds cuz you never know when you’ll need them. In addition to the regular meds I also bring my A535 & the Voltaran cuz again, you never know.

Are there other aspects of camping that I’m missing? Let me know & I will tell you how I deal with them!

Am I Better Yet?

May 27, 2021

Better than what?

Am I better than yesterday? Or Last Week? Last Month? Last year? Maybe, but that is not what you are asking, is it?

You are wondering if I still have Fibromyalgia or CFS/ME, or one of the many other invisible illnesses like Lupus, or Crohn’s disease. The short answer is No.

There is currently no cure for these debilitation yet chronic medical conditions. While there are treatments that *can* improve one’s quality of life, they do not work the same with everyone.

Now some people who are familiar with these conditions will ask that but mean something different. They are asking how one is, wondering if today is a good day compared to the bad day from last week.

Are you Better?? The connotations of the word better are eliminated by using a word like improved.

My answer to the later question uses the word “improved” not “better”. It clears things up because of the lack of clarity & assumptions made when using the word “better”.

Pain Scale

May 20, 2021

Most people don’t think that much when asked what your pain is.. “10 being the worst pain imaginable” Ok…but some people have an active imagination others not so.much…

Some people would think a broken arm is the worst feeling imaginable – Seriously?!?.. Some choose childbirth & yeah that hurts like an Fkn S.O.B…Or so I’m told.. Similar pain levels as Kidney stones.

Ok.. I’ve had kidney stones – they severely suck, but I only rated the kinda pain as an 8/10.. Cuz there’s worse pain that I could feel.. Like having limbs cut off with a chainsaw without the benefit of anesthesia.. Yeah, that would be my 10..

So when I go to the ER & I say I’m a 7/10.. They think yeah ok.. then I tell them what I consider to be a 10.. then they look at me differently.

So think it through the next time you talk to your doctor or someone asks your pain levels… & Clarify what you consider your 10 to be.

Grocery Shopping During COVID

February 1, 2021

On February 26, 2010 I shared a post by Misty Robert abou groveryt shopping with Chronic Illness.. Unfortunately it’s no longer accurate due to changes in our world during this pandemic. So, below is an updated version..


For healthy people, getting groceries is no big deal. even comparatively with COVID. But for people like us, with Fibromyalgia (FM) and CFS/ME, getting groceries can be as challenging as climbing Mount Everest!

Shopping takes an incredible amount of energy, as it can be hugely exhausting. The cognitive impact from needing to be focused and self-aware of what you & others are doing is super stressful. The Environmental factors including bright lights, crowds of people, with scent & audio sensitivities in the alert don’t help this situation. Add in COVID issues including the need for socisl.distancing, face masks and those who do not follow those rulez. These factors can, both in part or as a whole, exasperate everything sending you into a tailspin and a not so lovelyflare..

I’ve modified the tips from the previous article. They are meant to help limit the impact your grocery shopping because on your physical mental and emotional health.

Grocery List

Still a great idea. If you can, purchase for a longer term tell him that the number of trips you need to make to the grocery store. I keep a running grocery list of items that are pretty much standard for any trip to the grocery store but it’s also for items that I run low on or even run out of.

Organize your list. Try and organize it so that a coincides with your store so that all your produce is near the top of your list and then if your meat section is next then your meat products and if your bakery is next then your bakery items need to be listed and so on and so forth. It saves time because there is a lower likelihood of needing to backtrack. It makes it easier to follow the arrows on the group.

Plan Your Time

You know your store & you know where things are. In organizing your list it can help keep you focused so you can spend the least amount of time in the grocery store.

Plan your timing so that you schedule your trip when your energy levels are at their highest. Also consider the times that grocery stores tend to be slower, so avoid during the dinner hour.. The original article also suggested in the morning. With covid less people are working during the day so this time frame may be not as optimum. Many stores however do have a time frame such as 7:00 a.m. to 8:00 a.m. for seniors and people with disabilities. You can take advantage of this.

Additionally there are stores that do have significant lineups such as Costco that also give priority to persons who are working in healthcare or who have disabilities. I have taken advantage of this several times when shopping for myself and my parents.

Parking

Ideally you will have a accessible parking permit that lets you park in the accessible or wheelchair parking spots. If you don’t you may want to consider applying. It is fairly simple. Download the form from your Provincial or State website, have your physician fill it out and submitted it to your provincial services office or the Department of Motor Vehicles. A temporary permit is issued immediately.

For those who do not have a permit, and are unable to find a spot close, try parking near the cart returns. This will save you unnecessary steps later when your energy levels will be at their lowest. It is no longer recommended to grab a cart on your way in the store as it has not been cleaned and could be covid contaminated.

Choose Your Stores

First, ome stores are taking covid precautions a lot more seriously than others. I have found this in some stores. For those whose actions are more lackadaisical than others, I haven’t bothered to say anything but have simply walked out and left, never to return. I am not taking that kind of a risk with my health.. with my life..

Second, by sticking to stores you already know, you know where everything is.. You can avoid some of the unnecessary stress and wear & tear on your sore muscles. If you must shop at a new store, ask for a map. Some stores may have a little map located on the shopping cart. Take a moment to glance over your map, preferably sitting down with a cup of coffee before you get to the store.

Grocery Carts & Wheelchairs

How many times have you gone into a store only to find half way through that the cart you’re trying to push is out of alignment…or is missing a part? If you’re like me, this has happened one too many times. Be sure to check your cart out thoroughly before taking it too far. You’ll thank yourself later!

If you’re thinking of just grabbing a small basket instead of a cart, Don’t. It only takes one or two heavy items to make your arms and shoulders cry out. Plus by pushing a cart it gives you something to shift your weight on if you get tired.

Another idea for grocery shopping is to use a motorized buggy. Even if you aren’t in a wheelchair normally, taking advantage of this option can save you pain and agony later.

If you decide not to use a motorized cart, make your trip short. Previously, the recommendation was to take breaks. Many stores have a luncheon area or even a built in restaurant. Unfortunately, it’s no linger recommended &, in some places, illegal that you have a sit down with have coffee and a snack. Normally it would have been a chance to rest & recuperate. Limit the amount of time you are in doors shopping lower the risk of exposure..

If you walk to the store, take your own grocery buggie to wheel your groceries home. The stores don’t like you to take the carts all the way home in may cases it’s not even possible. So if you do have that heavy bag, you are not cayrying it.

At the Check-Out

Most grocery stores where I live now have a queue system , so you will get the next available cash. You got that next one that is available.

Addittedly, the less time you have to wait in line the better. Sometimes if you explain to the staff that you aren’t feeling well they might allow you to bump up the queue.

Card readers can be confusing to everyone, so don’t get flustered if you have some trouble. Ask the clerk for help and ignore the people grumbling behind you. Perfectly healthy people have trouble every day! And for convenience, activate your tap especially with covid so that you do not have to constantly sanitize your card. I think I may have fried the chip in my debit card. I’ve had to clean it a number of times because some places do not have tap, like Micheal’s. So, the tap no longer works.

Bag It

A lot of places no longer have people who bag stuff with your own bags. Costco does not permit reusable bags at all. Some stores like Dollarama require you to put your items on the counter and after being scanned to then remove them from the counter and put them in your own personal reusable bag. Discount grocery stores tend to not be have any changes in their policies I should normally be packing your own items. Summer stores do request that you do not place your reusable bags on the belt.

I believe the higher end grocery stores will still take your bags to bag your items. In that case, ask the checker or bagger not to load the bags too full.. You’re the one who has to drag them in from the car, or worse, carry them home! Also, if you require help to take your bags out, ask for help. Locally, here, they will walk your out to your vehicle & help load, but you must be wearing a mask.

If you’re too tired when you get home to put away your groceries, just put away what *has* to be put away – usually meats and freezer & refrigerated item.. You can always leave the rest until you’ve feeling a bit better. Unless you have a great husband or kids, trust me, they’ll still be there!

Christmas with Chronic Health Issues

December 23, 2020

The holiday season is supposed to be the hap-happiest time, the most wonderful time of the year!
Unfortunately, it comes with a lot of stress and expectations. Many healthy or ‘normal’ people can find it difficult. Those dealing with chronic illnesses like fibro, CFS/ME, lupus, etc have it worse.. Unfortunately, for someit is the worst time of the year.

Here are some strategies that can help when things get hectic:

• Pace yourself. Conserve your energy and taking it slow.
• Say “No”: You can only do so much. If you overextend yourself, that can & usually does instigate a flare in symptoms.
• Ask for help. Again, you can only do so much. Ask someone else to help out with what you can’t do like stringing up the lights
• Stop the crash by stopping before it happens. . If you go until you’re too tired or too sore or too stressed to do more then you most definitely will crash. “Just do one or two more things, or visit one or two more shops, or go down one or two more aisles'” – this thought process only leads to decreased health..
• Keep it simple. —Decorate but not as much, celebrate—but not as much, cook if you can—but not as much.”
• Put some extra thought in any travel plans (well, not a an issue this year, but in the future) traveling during the holidays. A busy travel schedule can be hell. Give yourself the time you need .. To recover from a travel day.. To rest between flights& have sufficient layover.. & Bring what you need to travel. Be it snacks, water, ear plugs, eye mask, medications . Plan ahead and pace yourself.
• Prep food ahead of time. Get the veggies ready to throw in the pot, make the potatoes the day before, roll & fill the pies a week or two before & freeze.. If you do breakfast, mix up your eggs, or pancake mix or French toast egg dip prior.. the night before so it ready on Christmas morning.
• Organuze. Set the dinning room table the week before, or the kitchen the night or two prior to whatever extent you can.
• Leave guilt behind! Take a reality check. You have a chronic pain illness which limits what and how much you can do. Do not blaming yourself because you can’t provide the same elaborate holiday festivities you once did. Don’t even try to do everything you think your family expects from you. Don’t put those expectations on yourself – they are not realistic aspirations.
• Set priorities. You can no longer do every single holiday traditions you used to. You now have to determine what means the most to you & consider the energy levels required. Some can be modified like I stead of going walking to check out Christmas, you take a drive to check out the lights. So, again, be realistic.
• Avoid overnight visitors if you can.. If you can’t, set the expectations like ‘I’m not making you breakfast, but help yourself’ or ‘I don’t get up until 10am so they know not to knock off n my door unless it’s an emergency.’ or ‘Can you please strip the bed before you go – just toss them into a pile on the floor for me to wash.’
• If you are hosting, you can (again, not this year) ask each one to bring one or two dishes, So my sister brings the turkey, my be CES do the stuffing & gravy, my brother brings the vegetables, Mom brings the desserts.. This leaves yourself only one or two simple items to prepare. In this case bun’s & potatoes. OR just go somewhere for dinner or even a family vacation together over Christmas .
• Organize your gift giving. Keep a list of who is getting gifts & what, so you won’t have the foggy moment of ‘Did I get this for Uncle John, Cousin Sue, or my brother?’ I even make note on where to get things so I’m not heading the same time 3 times. Plus My cookie list: I make 3 different sized bundles of cookies every year. A small ½dozen to the little guys or extended family, 2 doz to the nieces, nephews, godchildren (no, Kaden, my Godson and my nephew does not get two no matter how much he’d like that), & 3 doz to bff’s, my pain doc, & the bf’s…
• While it may be more expensive, the extra cost may be worth it to shop online. You avoid the stress and exhaustion of holiday shopping in crowds of people & lots on scencury impact. Gifts can sometimes be sent directly to the recipients, saving you the hassle of finding a box, packaging the gifts and waiting in line at the post office.
• Use gift bags instead of traditional wrapping or there are decorative boxes that you can just drop something in, tape it, add ribbon & done. It is physically stressful on the body to wrap gift after gift.. My back always gives out.
• What your diet!.. Do not over eat. Take home leftovers for later instead. If you eat too much, especially too fast, you just know your body will retaliate in some manner. And avoid all the extra sugar available at this time of year, cookies, cakes, candies, pastries…
• Change your schedule as little as possible. The changes on Christmas Holiday & especially Christmas day frequently send our bodies out of whack,. Try & keep your normal activities going.. Keep up with an exercise regime. Stick, to a relative amount, with your regular diet. Keep your sleep schedule as close to normal, if you have your book club meeting stops for 2 weeks, schedule a chat with on of your friends at the same time so that you are still doing something in lieu..
• While I keep seeing the recommendation of avoiding Eggnog, I can’t agree with this, but you do need to be careful. Egg Nog has both milk/cream & eggs in it so those sensitivities need to be confirmed. If you are buying your eggnog, be aware there a ton of preservatings, thickeners & other chemicals in it. If you make it from scratch – eggs, milk, sugar & vanilla, and while it tastes better, you can not keep it around forever, even in the fridge.
• Take time for yourself.Even if it’s just two slow deep breath’s, or an hour meditation, or ordering dinner in or doing your nails.. Self care at this time if year is just as important, especially with the limitations & upcoming 1 month lockdown here where I am.

With everything going on at Christmas time, it’s inevitable that while you may not X ash, you’re not going to feel great on Boxing Day. . If possible, just stay home and rest. The more time you can take, the better.

It’s also pertainent that these tips you need not only be aware of during the holidays, be the rest of the year throughb as well.

Merry Christmas