Archive for the ‘Self-Care’ Category

Stress Impacts the Body

November 5, 2021

You all know stress impacts the human body. No one knows this more than people with Fibromyalgia. Part of our issue is that our muscles cannot relax because of the pain signals we are receiving at all times. Add stress to that, with most common physical reaction to stress is muscle tension. So adding tension to an already agitated muscle makes for a disaster.

No one knows yet 100% of the cause of Fibro. If it’s actually a physiological issue or if it’s a neurological reaction? Either way, the addition of the tension to the already agitated muscle, skyrockets the pain, with definite real pain.. Not just a neurological misfire that we could potentially be having.

And before anyone says I’m minimizing pain, I am not. People with fibromyalgia feel pain every single day. – it’s the cause we don’t know. We don’t know if the cause is something physical in the muscles, we don’t know if it’s part of the nerve chain or even something in the brain. We.just don’t know And as many of you know, I’m in a remission with my Fibro. I still feel pain, but I’m better managed and had made alot of changes a few years back. As a result, my pain levels rarely rate over a 5 – right now. I have, in the past, been bed bound. So I’ve been at both ends of the spectrum. I am the last person to downplay anyone’s pain let alone someone with Fibromyalgia.

But back to stress… I’ve been dealing with some pretty intense issues lately.. The big 2: 1. Problems with my Mom & our relationship.. 2. Issues with the guy I’m seeing – relationship may be ending. And I don’t think either one reads this blog. Those are the big ones but there is always in additional normal day to day stresses..

So….. On Monday night I had a breakdown. A complete emotional & mental breakdown (this does not include the meltdown I had earlier that day). I was in such hysterics that at times I could barely breathe.. You also don’t want to see what my kitchen looks like, cuz it all hit me as I was cooking stir-fry, which means three pots on the stove, each carefully times so everything finished hot at the same time. Interestingly enough I could feel myself deteriorating and the rice was pretty much done, the meat was pretty much done and the vegetables were almost done so I took the presence of mind to grab storage containers and just put everything in the fridge because there was no way I was going to be able to eat it and I have no family to feed. But I didn’t give myself enough leeway and ended up destroying the contents of the shelves with the storage containers.. Apparently I have a decent arm because I found, after the fact, empty storage containers or lids in my dining area, my office area, one almost in the living room and also my bedroom.

I ended up calling the local mental health line & spoke with a gentleman named Craig who listened & offered support..Initially, my mind had been racing with a lot of dark negative thoughts.. But I finally got calmed down enough after over an hour of venting. & I was no longer in that dark and twisted headspace.

I woke up Tuesday morning physically & emotionally wiped. Unfortunately this was one of the days that I just can’t say no. I had to drop my mom off at her doctor’s appointments because she no longer drives. I still also had to finish prepping my Cub Scout meeting.. Which meant I also had to run my Cub Scout meeting because this week got dropped in my lap on Sunday. The meeting went well and I was able to get out of my head for almost 2 hours not thinking about those big two issues. By the time I got home in the evening after my meeting, I stripped down, showered, got extra medicated and watched some mindless TV. That’s all my body would let me do – I pretty much hit the wall. Oh & eat some of the stir fry from the night before – lol.

And this excessive physical reaction is 100% due to stress exasperating the Fibromyalgia and some of my ppother chronic pain issues.

Hairdresser Appointment

July 30, 2021

So, I had my first hairdresser appointment in months on Wednesday. I’ve not been to see her because of restrictions here in Ontario due to the pandemic.

No, I didn’t go wild & change anything, just a trim & tidy.

While many fibromite women find this to be a chore, I enjoy these visits.

Monique washes my hair & gives it a good scrub, which I can not do very well for myself. As a result I get a really nice head massage.

She then starts ‘playing ‘ with my hair, combing, brushing, cutting. I actually really enjoy the sensation of someone playing with my hair, even if it’s just to brush it. I find it totally relaxing .. I trust Monique not the screw up my hair, so sometimes I’ll just wait there with my eyes closed.

Afterwards, my hair, while still long is so much more thinner. Between cleaning the layers up & the thinning, I loose quite a bit of hair and the difference in the weight is significant. My hair then looks, feels & just is healthier. It also just plain ole looks better!

After the hairdresser June 2020

How I Got Approved for Disability

June 15, 2021

I first started having Endometriosis symptoms in my early teens. I started having CFSME symptoms in my mid-teen. My Fibromyalgia was triggered by a bout of of mononucleosis at age 19 which got slowly got worse…

Endometriosis was diagnosed when I was 26, Fibromyalgia at age 33, and CFSME at age 37. You’d think all these large diagnoses would qualify me easily for ODSP.

Nope.

My initial submission for ODSP, Ontario provincial disability benefits included documentation for endometriosis, fibromyalgia, edible syndrome, TMJ, asthma, IBS.. All of these diagnoses…No love..

From there I hired a lawyer you turned out to be a real dick and didn’t do squat. To keep my application current, I would request reconsideration based on regular bloodwork until I was able to get the needed documents.

When I requested a change of attorney I had to go into the tribunal, on the day of a huge snowstorm, with a broken foot.. The person who denied me didn’t even bother to show so the tribunal granted me the new legal representation – Durham Legal Clinic.

By this time, I’d seen Dr Alison Bested at the Environmental Health Clinic & had just become one of her patients in her private practice. I had another diagnosis of CFSME by her staff..

The legal clinic requested additional information from Dr Bested. They sent her a very specific document. This document basically outlined what I can and what I cannot do.

It covered the four broad areas of physical limitation. Mobility issues are those such as how far I can walk, do I need assistance devices for movement, how fast I can move – slow shuffle to jogging to an (ROTFL) out & out run. Upper body tasks include how much weight I can carry, how well I can push or pull heavy objects. Stair climbing functions are how many steps I can take, how fast I can climb. Activities of daily living include my abilities to eat, bathe, dress, sleep, administer my medications, preparing food & personal hygiene. She described me on my worst day.

My worst day, my pain is high. I can not walk more than to the bathroom – sometimes not even that far. This can cause issues with elimination. I am, at that point, unable to take any stairs, or carry anything heavier than a small plastic glass of water to take medication. I can not prepare my own food, let alone eat. Showering, brushing hair, cleaning my teeth would be beyond me at my worst..

Issues with Mobility, Stair climbing, , Upper-body tests & Activities of Daily Living like eating, showering and sleeping.

If you then you add my mental health health into the mix, especially as there were suicide attempts by this time, I was finally approved.

This same documentation, several months later, was used to successfully get approved by CPP-D, the disability program for Canadians.

It took several years for this process to complete.

24 Ways to Ease Up

June 11, 2021

With apologies to Paul Simon, there must be… 24 ways to ease your living.

Why 24? Why not? It’s a start! That people have to go online and type the words “How to relax” into a search engine should be indication enough that modern life may be getting too stressful. Why, with all the innovations and timesavers, do we feel more and more rushed?

Time is a constant – it always remains the same. What changes are our expectations of how much we can accomplish in that same old time. It’s scientifically proven that stress can lead to sickness and that relaxation is one of the things that can soothe the savage beast.

Hopefully everyone has at least one favourite way to wind down, because not every stress soother will suit every single person. Next time you feel tense and uptight, try out one of these ways to relax. Perhaps some will work for you, while others might inspire you to write your own list of ease-up ideas.

  1. Dance.
  2. Mono-task, as opposed to multitasking.
  3. Progressively tense each muscle, holding each for 5 seconds then releasing.
  4. Stretch.
  5. Go for a walk.
  6. Play a game. Sudoku, crosswords, hopscotch, whatever.
  7. Soak in a bath.
  8. Laugh.
  9. Turn off your electronics. Enjoy the quiet.
  10. Read.
  11. Take a 5-minute break to clear your mind and breathe.
  12. Cover your eyes with an eye pillow. Allow your anxious eyeballs to feel like they’re floating rather than gripping.
  13. Play with your pet.
  14. Drink a cup of hot tea. Or iced if that makes you feel better!
  15. Take a whiff of a favourite soothing scent, maybe citrus or lavender.
  16. Clean out the drawers of your dresser. De-cluttered can equal destressed.
  17. Soak your feet in Epsom salts.
  18. Listen to your favourite music.
  19. Light a candle and watch the flame flicker.
  20. Write in a diary.
  21. Talk to a friend.
  22. Make everyday activities more meditative. Like walking, for instance. Rather than rush down the hallway, place one foot in front of the other and really feel your feet ground into the earth with each step.
  23. Unplug (or turn off) your phone.
  24. Strive to take deep breaths to reach the tight spaces of your body – try to feel your breathing in your lower back and your shoulders

Source: PC Health by Shoppers Drug Mart

Fibro Sucks! But My Friends Don’t!

May 31, 2021

so we have finally reached the 31st of May, the final day of fibromyalgia Awareness Month. I know I’ve been posting a little extra and almost exclusively about fibromyalgia this month but but else would I do? LOL

what I would like to thank all the people in my life who support me. I made masks for those closest to me as well as myself. I would like to thank each and every one who wore these masks & I hope will continue to wear them until we no longer need them.

This lad is on of my guy friends whom I am fairly close to, but I was surprised when he said he wanted a mask. Apparently he knows others (including 2 mutual friends) with Fibromyalgia.

Tony.

The only one I made a mask for who I do behave an image of is my nephew cuz he couldn’t find his (not surprising, cuz his mom’s wearing it!) But my sister, her 2 daughters, and my Mom & Dad. I thank my family for their support

Cassie & Kyah, Wendy, Dad and Mom

My best friends and their partners.. I’ve known both Catherine & Gerry since high school. I’m lucky to have maintained their friendships after 30 years. I thank them & their partners. Cath’s masks read “I wear purple for my BFF” & “I wear purple for ME”.

Catherine & Brett and Sara & Gerry

As many of you know, I’m involved in Scouting & I had some of my fellows outer request masks as they know how much it impacts my daily life.. I worked with Rainbow 13th directly for 2 years in Beavers & she is our outgoing group chair for one group. Raksha 13th has worked with me at Cub level for 3 years now& is out incoming Ng chair. She has seen how it impacts me and the improvements I have made over the last few years. Rainbow 1sy, well.. I’ve only been working in tandem with her since Covid hit & we initially amalgamated the groups, but like the bffs, I’ve known her since highschool and we did Venture Scouts together as youth.

Rainbow 13th (Charlene), Raksha 13th (Jen) & Rainbow 1st.(Jenn)

& I support me. Some days I have to remember that.

i have 4 masks.. 2 that say Fibromyalgia Awareness, but different patterns.. one that states “I wear purple for my BFF” (cuz my bff has fibro too) & “I wear purple for ME”. Mine, I will have in regular rotation – good thing purple is my favourite colour..

4 different days 4different masks.. & Yes, each has been worn several times over the last few weeks. Very rarely was I not in a fibro mask. & If not, I had purple butterflies!

So everyone who supports someone with Fibromyalgia, on their behalf, I thank you. Whether it’s doing our groceries wearing a mask for Fibromyalgia Awareness or just checking in to make sure we’re ok,, we do appreciate you & your support.

Thank You!!

Take Care! Self Care..

April 5, 2021

Self care at this time is especially important, particularly with the limitations & 1 month lockdown here where I am.

Take care of yourself. You can’t help your kids, spouse, friends, other family if you are not functional. Like they say on flights, put your mask on first before you help others. It’s not selfish, it’s taking care of yourself you are able to help others..

Seriously!! Go drink some water or make yourself some tea. Put on your favorite sweater or take a really long shower. Talk with someone or just scream to vent your negative feelings. Light some candles or spray your favorite perfume. Get up – shower, dress, makeup will give you a sense of accomplishment even if you go nowhere. Watch a favourite television show or movie. Make yourself your favourite meal, or order in for yourself. Check online resources – support groups, information,links. Be aware of who you are & how you feel. Take a walk or find an online yoga class . Learn something or try something new. Wash your face or have long relaxing shower/bath. Give yourself a facial or paint your nails. Stop for a moment and do something that makes you happy.

Most importantly, Breathe.

This life you live is a blessing and it’s way too short to be stressed over all the time.Take time for yourself.Even if it’s just two slow deep breath’s and recognize what you can do for you.

Post-Christmas Crash 2020

January 1, 2021

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..

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

It’s OK To Not Be OK

December 14, 2020

My sleep schedule is screwed up again, not a surprise. So my intention was to get up early, relatively speaking, today.. That did not happen.

When my alarm went off yesterday, I kept hitting snooze and hitting snooze and hitting snooze. My brain didn’t want to get up yet.

So when I finally did get coherent, I really did not want to get out of bed. I don’t feel like I’m in the mental space to do much. So I canceled all my plans for today which included pickups for items for my Cubs, a run around the dog park with my pup and a visit to a friend.. all I’ve done today is let my dog out and go to the bathroom.. I still need to grab a bite to eat though and that will be something quick and dirty.

But it’s okay. Some days it’s just hard mentally, emotionally. Some days it’s just more difficult to cope. And for me yesterday it was one of those days.

it’s OK to not be OK.

Just recognize it for what it is and be aware. If it’s just a one-off like mine tend to be, you could just bounce back and be yourself tomorrow. Sometimes it takes a while.. couple of days.. a week to get out of the funk. If it goes more than a week though, consider talking to someone. Even just virtually, it can help..

Newly Diagnosed? Here are some thoughts for you.

November 9, 2020

Fibro can get you down so much. It can also make life so difficult. But it also brings people together, raises awareness and gets people the help they need – but you need to ask 😉

Here are a few thing to keep in mind to help you on your journey…..

  1. Don’t feel guilty. It’s not your fault. You did not cause this.
  2. With Fibro our lives have changed drastically… Don’t feel bad about not being the person you used to be – it’s not your fault…. Try & embrace who you are becoming – the new you.
  3. Housework will always be there tomorrow – but your time, love, experiences won’t be..
  4. Don’t worry about yesterday as it’s gone. Tomorrow hasn’t come yet so enjoy today, however you can. That might be having a bath, taking meds so you can chill out in front of the tv, going for a walk, or whatever you enjoy..
  5. Never ever feel bad about having to rest. This condition is very stressful on our bodies and with poor sleep we got very little healing sleep, so it’s no wonder your exhausted & hurting.
  6. If people want to know how to help you and what is wrong, they will do research. However, you can point family and friends in the right direction by sending them a link to online sites. ButYouDontLookSick.com has the spoon theory which while for another condition, also applied to Fibro.
  7. ENJOY THE GOOD DAYS! But don’t do too much! Took me about 20 years to understand how to pace myself!
  8. Not everything will work. It is a hit & miss process finding out what combination of diet, activity and medications works for you. For example, my bff swears by Gabapentin but I found it exacerbated my symptoms. I am getting great benefit from medical marijuana, but another friend got zero benefit..
  9. There are a ton of online support groups for Fibromyalgia & chronic illness.. Join one or two.. or six… Most others in these groups are like me & are here for you any time you need to chat – that’s one thing I really love about these groups..
  10. There is NO CURE. Ignore anyone who says they were cured, especially if they are trying to sell something – These people do NOT care about you. Or they are in a remission & delusioned in thinking that they are cured.
  11. Some days will be good, some bad and there’s not necessarily anything you could have done to prevent .
  12. This condition waxes and wanes, so while there is no cure, it is possible to improve.. it won’t last as your disease progresses.. Most people once they figure out what works do not deteriorate. I myself am currently bin a form of remission, with pain levels low, but 10 years ago I was bedridden.. Lots of changes over a long time helped me there.. So there is the possibility of improvement & remission with Fibro. I’m just enjoying the increased functionally & lower pain levels while I can.
  13. Flares happen. Sometimes there is nothing you can do to prevent it.. Myself, I’d say 50% of the time I can tell I’ve overdone it & a flare comes on.. The other 50% is unpredictable.. and yes, despite the semi-remission, I still have flares just not to the extent & frequency as I used to.. For that I am eternally grateful.
  14. Above all, take care of yourself and help yourself to feel better. Other people can wait 😉