Posts Tagged ‘Lifestyle’

Yes, I Tried That.

April 15, 2022

I know you’re trying to be helpful but your suggestions of yoga or CBD or massage or med XYZ, but I’ve tried it all already..

Medications.

In my case, I have tried all the meds. The only one I haven’t tried is one that’s available in the States but not in approved for use here in Canada. It’s called Sabella.. Specific medications for fibro include lyrica and gabapentin did not help and in fact, the gabapentin made me significantly worse – not good

I’ve been on any number of narcotic medications, starting at 20 Tylenol 3’s a month (that was a joke, way too insignificant) to high dosages of codeine contin & Fentanyl.. Fortunately, those were not at the same time.

I’ve also been on several muscle relaxing medications. Unfortunately, the one that works the absolute best is not covered my government benefits, but the one that is covered is adequate unlike many others.

i have been on anti-inflammatoriez for many many years due to Endo then the arthritis. Unfortunately, it seems to have started causing increased bruising in the last year or longer. As a result, my GP has taken me off my regular double daily dose. I now take an otc anti-inflammatory “as needed. “

I have actually been on various forms of medical marijuana and just as I’m finding the perfect balance to help, I start having issues, problems that might be due to cannabis products. We are still trying to figure out the cause because even tho I’m off *all* marijuana products, synthetics oils and otherwise, I’m still having regular issues. So the docs got no idea what’s going on. Read more here.

Exercise!

You’re kidding me, right? Do you know how hard it is to exercise when your body is screaming at you? Even Yoga.. Or swimming.. Or walking.. Even these simple every day activities, when you have severe Fibromyalgia can be unbelievably difficult. While it can help some it does impact others in a negative way, deteriorating their health.. I am lucky. I made a decision 10 years ago when I hit 303lbs on the scale at my doctor’s office. So I did start the long and painful, excruciating process of doing a smidge more activity, very slowly increasing what I was doing.

So yes, now I can go swimming.. well, walk in the pool, lol.. Before COVID I could participate in an aquafit class, but sometimes no more than bobbing in the water but I made the effort to be there.

Yes I can walk further, but that happened with great encouragement from my sister. Over the last six years, we would get together weekly to walk. On some days I can’t walk very far, but I try. This encouragement has led us to talking and we have become very good friends now. An excellent side bonus!

Yoga can still be very painful, depending on the speed, the instructor, the modifications, the positions we use and the flows (God I hate flows). I do have favourite positions like bridge & pidgeon that surprise people. But it took me 10 years to get to this point and it can still very much hurt.

Was at the gym, stepping around in an Arriba class earlier this week and crashed out that night… Barely made it to the time I take my night meds. Even took extra early pain meds to help dampen the pain so I could sleep.

The advantage of me having the gym membership at my local YMCA is the plus membership I fork out the extra for the plus membership because it includes additional99lounge, steam room & the infamous hot tub. The hot tub is my life saver. Can’t wait for my tat to finish healing so I can send all the way in to my neck

Diet.

These include gluten free, Keto, vegetarian, vegan, anti-inflammatory, Noom, high protein, Mediterranean, Weight watchers, diabetic, South Beach, intermittent fasting, paleo, raw foods, Aktins, etc… While some of these would works for some, none of these really helped me or could help me. Between complexity, my will power (or lack thereof), cravings and food sensitivities, none of these actually worked for me. My choice of “diet” is moderation and avoiding a lot of prepackaged foods. The closest to this would probably be the weight watchers program but I found their point system to be complicated especially with the cognitive issues with my Fibro. This adaptation has also helped me lose weight. So I still do drink Coke, probably still too much, but significantly less. I’ve almost 100% restricted out the xanthan gum, guar gum and carrageenan additives as they typically cause my IBS to flare which would start putting me in starvation mode, which makes maintaining, let alone losing weight even more difficult. Not to mention get some of these diets require me to eat foods with these additives in them.

I do treat myself every once in a while with a bowl of sorbet. Very infrequent use of these chemicals it is permitted because my body can tolerate them in very very small doses.

Alternative treatments

We’re talking massage, acupuncture, physio, osteopathy, chiro, etc. Physiotherapy does not really help the fibro other than adjusting exercises that could be beneficial to help increase strength, endurance or flexibility. In many cases this does not improve the pain due to fiibro in patients.

While chiropractic medicine helps some with fibro, it actually made my situation significantly worse.

Osteopath does help but it mostly treats my other conditions like post concussion syndrome, migraines or endometriosis and general health and wellness. Does not help fibromyalgia specifically that I know of.

Acupuncture does absolutely nothing for me or any of my medical conditions. I have tried it a number of occasions and hasn’t worked with any of the practitioners. One lady treated my Endo & gave me migraines. Any further attempts for any other issues have resulted in absolutely not relief

Massage can wonderful. If you get an appropriate RMT who understands fibromyalgia and will listen to you & adjust when you say “Ow!” it can help. Unfortunately it also tends to be very short-term

Injections.

For 15 years now, give or take, I have been getting injections of a medication called Marcaine which is a sibling medication to lidocaine. These I get with my pain physician who was initially in Scarborough and is now in Oshawa. These shots have helped over the years for anywhere between 4 days and 4+ weeks depending on the level of my pain

In the winter I also get epidurals up to three times each winter depending on my pain levels at that time. This tends to treat my osteoarthritis in my lower back, not the fibro pain. In doing that however, it reduces the OA pain, making the fibro pain more manageable.

lidocaine infusion. This is the one last treatment I know of. This is when they attach an IV and add lidocaine to your blood system. This is my next course of action for treatment. I have an ECG scheduled for next week so that I can access this treatment. Once it’s been verified that my heart is ok, I can and will book the treatment. I will let you know how it went.

Thank You, But..

Thank you for your concern for me and your helpful intentions, I’ve been dealing with this a long. Thank you for your pearls of wisdom persistent unsolicited advice is actually inconsiderate & thoughtless. I *do* know my body & I do know what works for me. It comes across to those of use dealing with these issues like we don’t know anything about my fibro and that you know more than me & my doctor. Honestly, in most cases, I do know more than my doctor. So please stop making suggestions cuz what worked for your friend’s cousin, Sally, I have already tried. or that your Dad’s friend’s daughter was cured, because it can’t be. I don’t need anyone telling me how other people’s treatment going to work for me because her fibro is not my fibro.

So stop I don’t need or want to hear it.

I Am Grateful

August 25, 2020

I know my last post was not a hugely positive one. Unfortunately I just needed to vent about what I was seeing around me. But there are many many good things that I am grateful for and they are bigger and generally more important than the issues I discussed previously. . So today I want to tell you the things I am grateful for.

Family: After several years bouncing in and out of a toxic rekationship that estranged me from everyone, I left permanently after he was finally charged. Despite great trepidation and concersn from my family, they agreed to let me stay temporarily, expecting me to go back yet again. But with their support & others listed me below, I realized that I was hurting myself & them with my behaviour. I have since rebuilt my relationship with my parents, my sister & her family. I even have some semblance of a relationship with my brother.

Geeze.. I’ve only written one & I’m already in tears as I write this!

My Best Friend: I was absolutely horrible to this woman whom I have been friends with since high school . Because of the control my ex had over me, I was a complete and total bitch to her. My ex even contributed, I found out later, to the failure of her lucrative homer business. After she had a significant health scare, I was *allowed* to visit her. We slowly started to rebuild a relationship.. I even crashed on her couch for a few month during one of the times I left him. She was, I don’t think she realizes, had a significant impact on getting my head set forward. If this has not been re-established, I may not have let the police in or let the charges be filed. She was there for me when I needed her. It took about 4 years since we reconnected for her to again call me her best friend. She never realized how important that was for me to hear her say that. I am not sure she even knows now.

Man.. another doozy.. I’m sure that there’s gonna be edits cuz I can’t see through the tears. (& more years in the edit.)

Those who know us will get it.

Durham Family Services: Because of my income level, I was eligible to access the counseling services through the region (kinda like a county in the US) The woman I met, Fran, helped me through alot that first year I was back. I worked on my self esteem, learned some new coping skills and started to love myself again.

YMCA of GTA: This is actually my gym. I am grateful for my gym because I was able to get healthier and loose weight. I also has alot of social interaction there with people & started making friends

My Lilly: Yes, I did do a blog post about how she’s helped me, but I am still forever grateful for her. Whether she knows it or not.

Friends: Old and new. I’ve reconnected with alot of people in my past like in the post about three’s, but others as well.. Add in the new friends I’ve made since I’ve been back, plus the few I managed to keep from during my estrangement. While I may or may not maintain these friendships, or I could get something new from them remains to be seen, but just having a larger social circle is helping me. Which brings me to..

Scouting: I know most people wouldn’t get this, but before my relationship, I was an active Scouter. Now I was dwindling down on what I could do, but I did enjoy it. Flash 8-10 years later.. I’m back. And my eldest nephew wants to become a Junior leader)SIT with the Beavers. We (my sister & I) thought this would be a great way for me to reconnect with people & to build something with my nephew. . So I started as a “One hour a week” Scouter. Bringing my nephew every week… Now, with an awesome team of Scouters & friend (again, both old and new) I’m a major role in the Cub section (age 8-10).. I’m able to work with the youth, yet still be able to pace myself & no over do it.. much.. Unfortunately, I won’t be able to return to troop level and do that. Fortunately, I’m actually enjoying working with this age group.

International Symbol of Scouting.

My Medical Team: To the non-judgemental support from my current medical team, I am grateful. I am now on a positive Health Care Journey. With their help, I’ve managed to improve my health . I’ve lost weight, I’ve become more fit. I’ve come off alot of medications I really did not need, and supported me through addiction, tho no one knew at the time. I know I will never be healthy enough to return to work on much more than a casual part-time basis, but I am able to live a decent life despite fibromyalgia & my 6-bilkion other health issues.

This isn’t even going through the little things I’m grateful for.. The sun on my face, The lake at the cottage. Having a car to drive.. To have a regular income. To smell the flowers.. For being able to hug people (yes, only a special few right now). For privacy. For Fun. For freedom. For Love. For painting rocks. For exercise. For healthy outdoor spaces.. & you, still reading my post!!

I’m grateful for itvall.. & to those I can thank, I thank you from the bottom of my heart!

Self-Care

July 24, 2020

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?? ๐Ÿ˜‰
  • 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.. ๐Ÿ™‚
  • 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. ๐Ÿ˜ฆ
  • Huggs ๐Ÿ™‚ 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
  • Becoming abusive
  • Self-defeating Mindsets
  • Narcissism
  • Self-harm
  • Personal neglect – Physical or mental
  • Refusing help

What self-care activities do you do?

What new activity would yuo like to try?

What is setting you back?