I Want You To Want Me

I’m tackling a tough topic again today – intimacy when you live with Chronic Pain. If you remember the Cheap Trick song, it’s been on my mind lately:

I want you to want me.
I need you to need me.
I’d love you to love me.
I’m beggin’ you to beg me.
I want you to want me.
I need you to need me.
I’d love you to love me.

How do you enjoy an active and healthy love life when you’re in pain all the time. How do you appease your partner, who may not understand what it’s like to be in pain 24/7. Even when you’ve explained it a million different ways, when it comes to talking about sex, and how painful it can be, it’s not an easy conversation, no matter how long you’ve been a couple. And your sexual orientation makes no difference either.

Intimacy is the fuel that keeps a good relationship running. It encompasses so much more than just sex. Think about the different ways it’s defined in the Thesaurus:

  1. the state of being intimate.
  2. a close, familiar and unusually affectionate or loving personal relationship with another person or group.
  3. an act or expression serving as a token of familiarity, affection, or the like, to allow the intimacy of using first names.
  4. an amorously familiar act; liberty.
  5. sexual intercourse.

Intimacy is also about being close emotionally. When was the last time you went on a date? When was the last time you actually sat and talked to each other ABOUT each other? Not about work or the kids, but about the two of you and how you’re doing. What’s new, what’s real, what you love about each other? When was the last time you looked into each other’s eyes and said “I love you” and really meant it?

If you haven’t dated for a while, maybe it’s time you did. Here are 25 easy date ideas that might get you started in the right direction:

  1. Go to a community play,
  2. Do an inside or outside picnic
  3. Work out together
  4. Go roller skating or ice-skating
  5. Movie marathon with ice cream sundaes
  6. Play hide and seek in a cornfield (or the woods)
  7. Go on a walk around your neighbourhood in the evening
  8. Go to estate sales together
  9. Make a romantic dinner at home
  10. Build something together
  11. Go bowling
  12. Go hiking!
  13. Find the best happy hours in town and make the appetizers your meal
  14. Have friends over and play board games
  15. Go to an antique store and talk about the past lives of old objects
  16. Get some thrift store tennis rackets and go to your city’s free courts
  17. Go to the neighbourhood pool
  18. Fly kites!
  19. Test drive an expensive car
  20. Go on a tour beer, food, etc.
  21. Find out what tours businesses in your city offer and try one out.
  22. Go thrifting or garage sale-ing together
  23. Do a breakfast date
  24. Find a free (or very cheap) class and take it together
  25. Go to the animal shelter and pet the animals

So once you’ve reconnected and you’re ready for sex again, the Mayo Clinic offers these suggestions when you have a partner who lives with Chronic Pain*

Sexual intercourse is just one way to satisfy your need for human closeness. Intimacy can be expressed in many different ways.

  • Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
  • Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
  • Oral sex. It can be an alternative or supplement to traditional intercourse.
  • Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
  • Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
*https://www.mayoclinic.org/chronic-pain/art-20044369

The key factors to intimacy are trust, respect and honesty. You need to be able to trust your partner won’t push you into something you’re not physically able to do and will respect your limits. There needs to be honesty between the two of you and with yourselves as well. Don’t use your Chronic Pain as an excuse to get out of sex if it really isn’t a problem…that’s not fair to your partner. If you’re avoiding sex for another reason, then be honest. If you’re mad at your partner for something they’ve done, then say so. Tell them what and why and talk it out.

Don’t use your health to avoid other issues, because you’re simply breaking the trust and respect factors when you do that. You already have enough physical pain in your life – don’t add mental pain as well. Intimacy is too valuable a commodity to just throw away. Keep working on it and before you know it, you’ll be building and rebuilding the relationship of your dreams. And that’s no Cheap Trick!

There is always hope

 

 

 

One Is The Loneliest Number

Living with Chronic pain is lonely.

I’ve been very lucky in my life with chronic pain in that I have a wonderful support team. My husband is amazing – he truly gets it and understands what I’m experiencing as he’s starting having some chronic pain issues of his own. My kids are terrific too and are my biggest cheerleaders. I’ve been blessed with amazing friends who are sympathetic to what I go through on a daily basis, and who understand when I need to cancel plans at the last minute because of my health.

But I’m lonely.

Chronic pain causes you to isolate yourself because you hurt so much all the time, you just don’t want to be around people, yet you don’t want to be alone either. You never know when a flare is going to happen, so you tend to not make plans because you don’t want to be that flake who is constantly cancelling things. I’d rather try and make spontaneous plans but it never feels spontaneous to me…it actually feels desperate. And nine times out of ten, when I do make plans, I end up cancelling them because I wake up on the day of the big event feeling horrid. It’s generally because I’m exhausted as well as being in pain, but no amount of napping is going to make me feel well enough to go out. Of course, if I didn’t have plans that day, I’d have slept just fine the night before. It seems that I’m busy sleep stressing about the date, knowing I’m going to wake up feeling crappy, and then sure enough because I’m sleep stressing…I wake up feeling crappy! And even though I have great friends, I’m sure they must get tired of me flaking off all the time too.

It’s even harder when the people in your life don’t “get it”. This quote comes from Stephanie Schwerin Uplook from a Facebook Fibro Group I belong to and is used with her permission.

This is what she had to say:

Fibro sucks…having family members that don’t get it and don’t listen to one word you say when you try to explain how and what you feel. It’s not cancer, it’s not something they know anything about, it’s not terminal, it’s not that bad. You look fine…I’m really tired of being brushed off like it’s not that big of a deal. They don’t know how bad it can feel, the physical and mental toll it takes on me. No clue, no sense in trying to explain it. This last flare lasted a week and it was bad yesterday and today I’m tired and sore, I feel like my body is trying to recover from the flare, depression has kicked in. I’m wondering if this is how the rest of my life will be.

You know what’s the most aggravating?? I’ve changed so much of my lifestyle to get rid of this crap and I’ve seen no change. I swim every day, I have weights for the pool, I watch what I eat, I’ve researched and researched, I walk most days, I take magnesium supplements and I’ve seen a Rheumatologist at the Mayo Clinic. Those are just a few of the things…and for everything I’ve done, it seems to be getting worse with every flare. That’s depressing. I’m 49 yrs old and to watch me get out of a sitting position after only 5 mins of sitting, you would think you were watching a 90 yr old. My husband can’t believe how quick my body locks up, even after I’ve been in the pool for an hour or how I can’t turn over in bed once I lay down. Getting up out of bed is another struggle…I’m so tired of this crap. I really don’t talk much about how and what I feel anymore with anyone. I get tired of hearing myself complain about how I feel, I’m sure they do too. I mostly have a good positive attitude and can deal with this but today, I’m tired, I’m tired of all of this.

Wow…that’s painful to read. But it happens to most of us and if you’re reading this and you have Fibro or Chronic Pain of some type, you’re probably nodding your head and recalling when this has happened to you.

Lately, most of my mornings have started off with a good cry…I’m 56 and it just hit me recently that this is NEVER GOING TO GO AWAY. No matter what I do, or how good I treat my body, this Fibro is never going to go away and in fact, will probably get worse as time goes by.

That’s a thought worth getting depressed about. How does one stay positive when that’s what you have to look forward to…nothing but more days of pain and exhaustion and the people you love not understanding you, so you continue to feel guilty about having a disease like this, like it’s your fault somehow.

All I can say for sure is that it’s NOT your fault, and you have to take as good of care of your body as possible and not let the words of others hurt you. They mean well, but they don’t understand what it’s like for us, because there is no way to make them understand. No description we give them of Fibro can possibly come close to actually living it. Just do your best to keep your spirits up, try not to blame them and do what you can to stay as healthy as possible. Find as many comfort measures as you can on the days you feel the worst and make a list of all the things that are good in your life so you can refer back to it on your really bad days. Those are the things I do. I also try to reach out to help others as it takes me out of my head and puts me into “action mode”.

So what do you do when it comes to loneliness? What do you do when you need help? My dear friend Brenda Teichroeb Heywood suggested this particular blog post today. She is a single mom of 7 children ranging in age from adult to 3 and is going through a very difficult situation right now plus getting ready to move. She had this to say:

“I have always been the type of person who did not want to barge in during a sensitive time for someone. In their pain, I did not want to bulldoze my way in and then expect them to be grateful for my “help”. Yet, here I am, desperate for help in this very drowning experience and so many are sitting back and waiting for me to tell them what I want. I am just so overwhelmed, it would be better for someone to just jump in. I wonder if it would be a helpful post to write to those who live with or know people to struggle with chronic pain. Is it better to jump in and help the person? Is it better to respect space and wait?”

I responded back to her:

“Sometimes the people able to help just don’t know how to. Personally, I think people stand back waiting to be asked because they don’t want to interfere with or disrupt a person’s life. They don’t want to intrude. It’s like saying “call me if you need anything”. They’re willing to help, but the onus is on you to reach out for it.”

And she replied:

“It’s hard. To be so exhausted and then still do the asking. One friend has offered over and over that she’ll help me in any way. I’ve asked multiple times for help with packing and sorting and she has yet to show up. Sigh. This is not for forever, but I’m worn thin. And I think the little girl in me just wants to be rescued. Maybe what we need from others is a person by person thing or season by season.”

Isn’t that how we all feel…like we want to be rescued? Yet the only person who can truly rescue us from loneliness is ourselves. If no one knows how we’re feeling, we can’t blame them. And if no one “gets” what we’re going through, we either have to keep finding ways to explain it or realize that perhaps they just don’t want to get it. Maybe they don’t believe us, or maybe they’re too overwhelmed with what we experience. We frighten them with the intensity of our pain and fatigue and finality of this disease. They know it’s never going to end just as much as we do, but they don’t know what to do or say, so they do and say nothing. Or if they say something, it’s a joke. Or a nasty comment. Defence mechanisms come in all shapes and forms, so we can’t take it personally or we’ll go mad.

Loneliness goes hand in hand with Chronic Pain and Chronic Fatigue and all Invisible Illnesses. It’s up to us to learn how we want to manage it. Do we want to reach out to others or have them reach out to us? We need to communicate that to the people we love, so they know what the expectations are. You’d be surprised how many of your friends may be sitting there, waiting for you to call to say you’d love to get together with them – and they’ve just been waiting to hear from you to give the go ahead.

One is the loneliest number but it doesn’t have to be. Pick up the phone, send an email, say hi on Facebook…do whatever is easiest, but make a connection soon. Turn your one into two.

There is always hope.

August Link Ups

August Link Ups for A Chronic Voice

I’m taking part in my very first Link Ups on the blog A Chronic Voice.  Sheryl is the Authoress of the page and she hosts these online parties every month, providing 5 word prompts to help get us writing. We’re allowed to submit one post per month utilizing these prompts, so I thought I’d give it a go.

Prompts for the Month

  1. Figuring
  2. Completing
  3. Boring
  4. Cuddling
  5. Chatting

1.Figuring: I spend a lot of time figuring out what I want to share with my readers when I’m writing up new blog posts. A lot of my posts have to do with my own personal health, but sometimes I switch things up and share about other things, such as our pets that bring us such comfort when we’re feeling ill, or about body image or feeling invisible. But I often wonder if that’s what my readers want, or if they want more generalized posts about Fibro and Invisible Illnesses, so I second guess myself a lot. I’m a fairly new blogger, having only seriously been at it for the last 3 months now. I think my best bet is to mix it up and include a variety of posts and see what type of comments and traffic I get and just decide from there if I’m doing the right thing.

2. Completing: When I’m in pain, I tend to start a lot of different projects to keep my mind busy, but I’m not always good about completing them. I have half done crafts all over the place – artwork I’ve started and never finished, a multi-media piece that I don’t know what to do with, beads that I want to make something with, polymer clay that I want to create with, crochet needles and yarn that I bought to teach myself how to make a scarf and a needlepoint kit of a cow, because I love cows. I need to learn how to focus on one thing at a time, complete that particular project and then move on to something new instead of having 6 different things going and none of them being worked on.

3. Boring: Being housebound because of Chronic Illness can be awfully boring sometimes. You wouldn’t think so with all the things I have that I could be doing, like all the projects I just mentioned. I could also be watching Netflix or reading a book or making a coffee date, but here’s the thing…most of the time, I hurt too much to consider doing much of anything at all. I try not to complain to anyone, least of all my husband, but most days, I start off by having a wee cry. The rest of the day is basically one long blur of bore with each day the same as the one before. I’m always up super early because I don’t sleep well, I spend a lot of time on Facebook, I work on my blog, I play a few Facebook games, I spend time with our cat Dorie, and I wait for the mail. Hubby comes home, we have dinner, he goes to bed fairly early, I do more on Facebook or my blog and finally, around midnight, I try going to sleep, just to wake up at 4am to start all over again. Boring!

4. Cuddling: I am 5’2″ tall and my husband Ray is 6’5″ tall. You wouldn’t think so, but it makes for perfect cuddling!  When I hug him, my ear is right at the level of his heart and I can hear how his heartbeat quickens when we connect like that. Laying together, we fit like two perfect pieces of a jigsaw puzzle, each body part meshing with the other. We spoon together, I snuggle up to him – no matter how we cuddle together, it’s always a perfect fit.

5. Chatting: I love chatting online with people and the one thing I can honestly say about myself is that I love to help other people. I stay up to date on current affairs, but mostly, I’m a counsellor. I like to listen to people and it seems they naturally like to share their problems with me. I’ve lived an interesting life and have a lot of common sense, so I enjoy offering them good old fashioned advice like Ann Landers. That’s why I was delighted to find websites like Quora and The Mighty  – they’re perfect for me. I’m able to share my knowledge and wisdom with others while learning at the same time.

So, there we have it, my first attempt at the Link Up Challenge! I hope you all enjoy the read and decide to follow me for more of my posts. Just click the little “follow me” button on the right side of the page and voila! you’re done! You’ll get an email every time I post something new.

Thanks for your ongoing support. I blog to share my thoughts, to educate the public on Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness and to give from the heart. Remember…

There is always hope

Creature Comforts

Oh, today’s post is a goody!!!

Today, I’m talking about creature comforts…and by that, I mean the pets that bring us comfort when we’re in pain, or just needing a little extra loving. This is a guest post and I’m going to be introducing you to several of my Internet friends and their furry companions.

Lets start with Catherine Taylor and her Bichon Chloe. Catherine shared this with me:

Bichons in general are very loyal and Chloe and I bonded from the start. It was like she imprinted on me … she was my shadow. When she was a pup, we had her outside one day, playing in the girl’s sandbox/play centre. It had a small slide and the girls put her at the top of it and ‘encouraged’ her to slide down it. Chloe was having nothing to do with it. I went to the bottom of the slide, crouched down and called to her. She turned around and saw me and tentatively made her way to the top, looked around once and then slid down to my waiting arms. This dog trusted me 100%. I love animals and feel privileged when an animal trusts me. I believed this dog would risk her life for me, if she had to. We were friends for life.

Chloe1

Chloe comfy in the chair

When I developed fibromyalgia, she stayed by my side as I spent more time in bed resting. She could have stayed near the action (and food) with other members of the family downstairs, but she became a fixture, literally, at my feet and often lying over them. It was like having a weighted therapy blanket (didn’t know about those back then). She wasn’t too heavy, just the perfect amount of pressure to make me feel snug and my feet warm, which are usually cold. She’d stay for the duration while I slept. Wherever I was, she was beside me.

Chloe2

Chloe laying on Mommy’s legs in bed!

As anyone can tell you, it’s comforting and soothing to have the warmth and devotion of another being close by, one that doesn’t require anything from you. Studies have shown that blood pressure and heart rate decrease when petting an animal. Chloe passed away last year and I miss having her by my side.

What a sweetheart!!!

Our next guest is Elaine Zena Feather and her precious rescue baby Felix

Felix is my gorgeous rescue fur baby. He’s been with me almost a year and a half and he was barely more than a kitten when arrived. My granddaughter named him Felix which is also special. We’re not sure if he had been abandoned but he was definitely very nervous. He was happy to come to me straight away and have cuddles but he kept finding little hidey holes when we first got home (including diving into my drawer under the bed and he would not come out lol. My son had to remove the drawer and coax him out. Before long he made himself right at home, stretching his long, furry body out on the carpet.

 

He is such a loving boy and will lie right next to me wherever I am, snuggling up and wanting lots of cuddles. He will lie on my lap and turn himself over so he’s lying in my arms. Then he’ll put his paws up to my face for me to kiss them. I cannot imagine my life without him. He follows me round like a dog and comes running when I call. He’s very vocal and “chats” away to me. He really is a comfort and is loved by all my family. He is also very good with my grandchildren especially my grandson who was totally besotted with him. He has beautifully long fur and is happy to be brushed and will even roll over for me to do both sides lol.

Felix5

Felix showing off his luxurious fur

His one “downfall” is he keeps bringing me “presents” which I do my best to rescue and then release back into the wild. Unfortunately I have ended up being bitten a few times by rescued mice and boy does it hurt. I just sometimes forget because I just want to try to pick them up before they disappear somewhere in my house that I won’t be able to find them. I can’t really blame Felix though because it’s what cats do and we have amazing open fields at the back of us which is a great hunting ground. They say having an animal reduces stress and stroking them is very good to reduce blood pressure but also to keep you alive longer. I totally believe that’s true cos having my snuggles with Felix is wonderful and makes me forgive him anything……..even him waking me up at 4am to go out lol xxx

Felix2

Elaine and Felix cuddling each other

I love how furry Felix is!!

Our next guest is Julie Villefana and her Old English Sheepdog Don Pedro

I have been living and coping with having Fibromyalgia as well as Chronic Fatigue Syndrome for many years. At the beginning I slept a lot, as well as cried and generally felt very unhappy. My mum lived with us, so I was busy hanging out with her. She basically got me out and about as little as I did. Then about 10 years ago my mum had a stroke and was first hospitalized and then placed in a Nursing Home. I was devastated. I had lost my only friend who really understood, or at least tried to understand my new-found life. Even though I am happily married, my hubby is away a lot. So, about 8 yrs ago we decided to get an Old English Sheepdog. We named him Don Pedro and he was 8 weeks old when we brought him home.

DonPedro5

8 weeks old

He was so small that he fit on my mum’s tray on her wheelchair! He forced me to not only have to take him out to do his business and general exercise, but also to learn to smile again. He brought and still does, bring such joy to the world! He attracts attention wherever we are. Many stop to ask questions about him, to which I have to reply, naturally. He made me happy again. Sometimes I feel that I have to dress the part to just take him outside to be seen by the world. Plus, he is such a character and certainly has a personality of his own.

DonPedro3

Playing with his girlfriend

If it weren’t for him my life would be very much duller. He seems to have adopted my lifestyle in that he rests when I do, which is a lot. Plus he seems to sense when I am at my worse and snuggles beside me on our bed. (We actually had to get a bigger bed as he tends to jump in ours and slowly push us to the edges so that he can stretch out)! I post a lot of pictures of our Don Pedro on Facebook and Instagram, etc, because he is so photogenic and adorable to us at least.

We have been on the front page of the news twice, including even winning a Lookalike Competition! And now that we have recently moved to Victoria, he is constantly being photographed by the massive array of tourists. Yes I realize that his breed don’t live forever, and we hope that he will be with us for many more years of sheer joy, we know that he will leave us one day, where I will have to carry on as best I can, but for now I will enjoy everything that he has to offer. I thoroughly recommend an OES for anyone housebound and in constant pain as am I.

 

 

DonPedro2

Julie and Don Pedro enjoying the snow

I can’t wait to meet Don Pedro as Julie and I are friends in real life and she just moved to my town of Victoria, BC!

And finally, there’s my pet, Dorie. What can I say about my sweet kitty? We’ve had her for 9 years now, since she was a kitten and she is definitely MY cat.

BabyDorie

Dorie at 10 weeks old

She plays with Ray but she cuddles with me and I’m the one she curls up to at night when it’s bedtime. She sleeps tucked right up beside my tummy, as tight as she can and only moves when I need to get up to pee. She waits for me to come back and get comfy and then *boom* she’s right back in there again!

PamDorieBed

She seems to instinctively know when I’m having a bad day too. She loves to come curl up in my lap on those days, offering me comfort. On other days, when I’m blogging or otherwise occupied on the computer, she’ll stay close enough to wait to an opportunity to sneak onto my lap whenever she can!

Dorie2Oct2016

Just waiting for her moment!

Dorie has two special toys that she considers her babies – a blue crocheted string and a small stuffed bunny. She carries Bunny and String around the house, chirping at them and leaving them in the strangest places. We’ve found them in the food bowl before, and I once found Bunny in the recycling bin and the bathtub! Our rule is that we never move them unless absolutely necessary.

BunnyAndBSODinHelmet3

Bunny and String

Here I’d only set my motorcycle helmet down for a short while but apparently it was a good home for both toys! Dorie makes me laugh with her antics and I think that’s one of the best things a pet can do for you when you live with chronic pain – laugh!

Do you have a pet that helps you feel better? Tell me about it in the comments below and if you’d like to be featured in a post like this in the future, send me your information in the Contact Me form and I’ll be in touch!

Thanks for reading!

There is always hope!

Some Body To Love

I love my body! Despite the fact it’s a piece of crap on the inside and has been for a very long time…I still love it!  220px-Breathe-face-smile.svg

It’s not a model’s body, not by any stretch of the imagination, but my husband still finds it attractive after 24 years together. He took this photo back in 2011 when we went on our first cruise and when I asked him if he could find it (because I wanted to show it to our daughter to prove I looked good in a two-piece back then), he looked at me almost in disbelief and said “of course I can find it”. He knew exactly where it was because it’s a favourite of his.

Pam'sButt

I was 49 when this photo was taken and I’m 56 now. I don’t look quite the same as back then but I’m working on it. I’ve had a hip replacement since this was taken plus another surgery, as well as many years of increased pain with my Fibromyalgia and other illnesses. In fact, over half of the Invisible Illnesses I live with now didn’t even exist in my body when Ray snapped this photo. But I still love my body, just the way it is right now.

I’m 5’2″ tall and I weigh about 145lbs right now. I fluctuate up to 150lbs. I have strong arms and legs, but my fingers and hands are weak. Once upon a time in 2008 in Calgary AB, I walked a Half Marathon in -23 degree temperatures (with a windchill of -30). The annual Running Room Hypothermic Half Marathon is quite famous and is now held in cities across North America.  This was my very first time – I took a training program but hadn’t trained properly near race day because of my health and really, I probably shouldn’t have even done it. However, I finished in 3:30:22 and in fact it was such a good race time that Ray almost didn’t make it to the finish line in time to take photos of me crossing (it was a surprise for me). I was delighted to finish and vowed I would never do anything like that again (I got a tiny bit of frostbite under my chin which was the only area left exposed).

HypoHalfMedal

I love my body now, but there was a time when I mourned for the body I used to have. Back in the mid-2000’s, I used to be in great shape. I went to the gym, I had a trainer named Terrianne and I lifted weights – heavy weights. I was doing 40lb bicep curls and 80lb hip abductors and at one point, I could leg press 800lbs. Yes, you read that right…I could leg press 800lbs. I was well muscled and toned and in the best shape of my life. It was only because of 3 unexpected surgeries between 2006 and 2007 that my life derailed and I was unable to recuperate properly. In fact, I had barely done any proper training for the Hypothermic Half when the Marathon actually took place, so to finish in the time I did was a real testament to the shape I’d been in previously. We really take our bodies for granted when they’re running well, don’t we?

I still love my body! Even after everything it’s put me through with surgeries, and Fibro and Chronic Pain and Chronic Fatigue and all the other Invisible Illnesses, it’s the only body I have, so I try to stay positive and treat it well. I like to try to keep my mind sharp as well so I enjoy doing things like word search puzzles and crosswords and I’ve always enjoyed those online hidden object games. Because I don’t get out of the house a lot, I do tend to spend a lot of time on the computer, but sometimes, I’m aware of being “housebound”. It’s an awful sensation and it makes me feel like an invalid. A shut-in if you will. How about you? Do you ever feel that way?

Unfortunately, I have to use a cane for mobility purposes. I’ve had my right hip replaced and it works great, but my left hip still needs to be replaced in the near future. Additionally, my Left Achilles Tendon has been giving me problems for quite some time and even though I’ve seen a physiotherapist, he’s not been able to do much for me. We’ve tried massage and acupuncture and he feels that there’s not really much else that will help the problem, which he thinks is more with the tendon attaching at the bone. Ultrasound isn’t going to improve anything, so after 4 sessions, we’ve called it quits. The other reason for using a cane is that my right knee has problems with severe pain and an occasional buckling and collapsing problem. It’s arthritis that causes this and so I wear a knee brace and use the cane for stability.

Sometimes, when I’m out running errands, I have to use a rollator because the distance is too far for just a cane. Mine is bright orange and made by Hugo:

s-l300

I call it my “Pambourghini”. Seriously though, it’s great for use around downtown Langford where I live, or when I take the bus to the doctor because it folds up with one hand and it’s easy to transport if Ray and I take the truck somewhere instead.

Here’s the thing though – I don’t want to be defined by my Chronic Pain, and just because I use a mobility device doesn’t mean I don’t want to look my best at the same time. I try to dress fashionably but I also have my own unique sense of style. I can’t wear high heels, so I tend to wear shoes that have some sparkle to them. I love long dresses for a more feminine touch, and over the course of the last three years, I’ve gone from having summer hair (practically bald) to short hair to long hair.

And when I have a chance to go out with friends or with my husband on a rare date night, I want to look good. I want to dress up and be pretty and look like every other person around me. I don’t want someone to be able to pick me out of the room and say “oh, there’s the one with chronic pain”.

But while I care very much about how I look, I’m often too tired or too sore to go anywhere and when I do go out, it’s usually a medical appointment. The last person I need to impress is my doctor. In fact, I generally want him to see me at my worst, so he knows what my day-to-day look really does look like.

GWSoonFlu

In order to try to take care of myself, I’ve recently taken on a 30 Day Challenge to do 20 Squats, 20 Wall Push-ups and 20 Bicep Curls every day. I want to try and be as fit as I can in the body I have but I know I need to start slow so I don’t cause a Fibro flare-up. This was my modified answer to an invitation from a friend for a 100 Squats a Day Challenge. So far, I’m on Day 2 and I’ve done both days in good form!!! Go me! I set an alarm on my iPhone to remind me what to do and when, and I’m determined to follow through!

There was a time when I didn’t always feel this way. I felt like my body had betrayed me. It was hard to go from being so healthy to suddenly being bedridden half the time, or unable to go for a walk without using a cane. It was frightening to think that this was going to be my future, and chances were it wasn’t going to get better, only worse. And in a lot of ways, it’s been true. I’ve had to give up hobbies I loved because I don’t have the stamina to keep doing them.

When I lived in Calgary, AB, I used to sing in a women’s 4 part a cappella Barbershop Chorus called Rhythm of the Rockies, and in a quartet called Quintessence. We were part of Sweet Adelines International and our chorus would compete in Regional Competition against other choruses from BC, AB and SK – we were the All Canadian Region, Region 26! The winner of the Chorus competition would go on to International competition the following year. In 2005, Quintessence decided to compete for the first time in the Quartet competition and ended up winning Novice Quartet of the Year!! I think we placed 10th out of 16 Quartets as well. We were so proud of ourselves!!!

Quintessence

Quintessence Quartet: Cheryl (Baritone), Pamela (Bass), Lauri (Lead), Judith (Tenor)

Rehearsals became too much for me, when pain and fatigue took over my life. We competed one more year, in 2006 but that was my final year of singing, including in the chorus. What a huge disappointment that was for me. I had been singing in some form or fashion for most of my life. And now, that was gone. It’s even harder now that I live where I live as the very excellent Pacific Edge Chorus from Sweet Adelines rehearses just down the road from me. I would love to be a part of singing again but I just don’t think I could manage the energy required to be involved again. I have to be honest though…every Tuesday night, I’m teased by the fact there’s a rehearsal going on!!

How do you feel about your body? Do you feel like your body has betrayed you since you first developed Fibromyalgia? What has Fibro taken from you? Did you used to be involved in any crafting or hobbies that you had to give up?

Do you still like your body?

Despite everything, I still love my body. I’ve forgiven it for what its gone through. I know it’s not it’s fault, it just is what it is. Overall, on the outside, I think I’m aging well. I have no wrinkles, lots of silver in my hair which I love, and the older I get, the more content I seem to be with life in general. I’m in love with my hubby, my kids are doing well in their lives and my three grandsons are all happy and healthy. Those are the things I like to focus on, not the parts that are breaking down left, right and centre. I try to remain positive and stay joyous. Contentment IS achievable, but it takes fortitude and the right mental attitude.

If you’re struggling, I invite you to reach out. I have a wonderful little booklet with some powerful words from women I’d be happy to pass along to you, so if you’d like that, send me a message using the Contact Page. It’s about more than just body image…it’s empowering in many different ways, but all about being a strong woman. And that’s how I like to think of myself. I am a strong woman!

Our bodies are complex, but they’re all we have. Let’s all be strong and learn to love them again, just as they are.

Remember…

there is always hope

Controversial Debate

Welcome!

I want to get controversial today and I’m even going to throw in a disclaimer that this post is my PERSONAL opinion. I have no affiliation with any of the organizations mentioned within.

I was recently involved in an online Facebook discussion that got pretty heated. What was it about you ask? Well, let me ask you a question…

Is there a blood test to diagnose Fibromyalgia?

The answer is NO.

Is there a lab test to diagnose Fibromyalgia?

The answer is YES and NO.

WHAT????

How can there be both? Well, I’m going to explain it to you and when I’m done, you’ll see how wording can make you believe both things. Before I do though, I’m going to give you the correct answer. As of right now, today, there is NO blood test that definitively diagnoses Fibromyalgia. Not according to the Mayo Clinic, Johns Hopkins or any other leading hospital in the United States.

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First off, let’s get something clear about Fibromyalgia. Fibro is NOT an inflammatory disease. It is technically NOT an autoimmune disease. What Fibro IS, is a NERVE disease where the brain misreads the pain signals going to the body through the spinal cord.

The big test that everyone talks about when they say there’s a lab test that DOES diagnose Fibro comes from EpiGenetics. It’s called the FM/a test and it shows some promise that it could potentially diagnose Fibro. They say it does that now, but I say in the future. This article from Healthline explains it in more detail but it’s important to note that more clinical trials need to be done before we can trust this test to be the definitive lab test we’re all waiting for.

Here comes your Science lesson. This FM/a test looks for chemokines, which are a family of small cytokines, or signalling proteins secreted by cells. Some chemokines are considered pro-inflammatory These are formed under pathological conditions (on pro-inflammatory stimuli, such as IL-1TNF-alphaLPS, or viruses) and actively participate in the inflammatory response attracting immune cells to the site of inflammation. But as I said above, Fibromyalgia is NOT an inflammatory disease…so how is this blood test going to be useful other than by process of elimination? And by that, I mean it’s going to rule out all the other diseases that DO have inflammatory responses, such as Lupus, MS, Rheumatoid Arthritis, etc.; basically, all the auto-immune disorders, which would have already been ruled out by the doctor through a regular panel of blood work.

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The way Fibromyalgia is diagnosed is by using the traditional Tender Point test. There are 18 tender points on the body of a person with Fibro:

fibromyalgia-disease-overview-18-638

As indicated, having 11 of the 18 Tender Points is considered a positive diagnosis. This is the ONLY way Fibro is diagnosed, after all other possible conditions have been ruled out, such as arthritis, lupus, MS, etc.

This Tender Point test has been accepted as the gold standard in the medical community for years and will continue to be utilized until the medical community itself accepts a blood test as the new standard. That may be the test from EpiGenetics or there is one being developed based on RNA, not DNA, by a company called IQuity. They call their test IsolateFibromyalgia and you can read about it in this article.

EpiGenetics has developed their test and are marketing it aggressively, but it hasn’t been endorsed by the major hospitals like the Mayo Clinic or Johns Hopkins, etc. or by doctors who treat Fibromyalgia. It’s accepted in most States, as well as in Canada and several other countries. Insurance and Medicaid will cover it in the US, but I don’t believe there is insurance coverage anywhere else, so you have to pay $1080 for the test, plus possible shipping fees to their California Laboratory and it takes a week to get results. In my opinion, that’s a lot of money for something that doesn’t have the support of the medical community.

For people with all the symptoms of Fibromyalgia, one of the most complex of the Invisible Illnesses, in my opinion, the future could be looking a whole lot brighter a whole lot sooner than we think. Instead of having to rule out multiple other conditions, a simple blood test will be able to help your doctor determine if you have Fibromyalgia, which means treatment can start sooner rather than later. Who knows…perhaps once we have a test to determine if you have Fibro, it won’t be long before we have an actual treatment for it too! One that really works, not just masks the pain or other symptoms for a short period of time.

Your best weapon against Fibromyalgia and all Invisible Illnesses is education. Stay up to date with information from trusted sources like the Mayo Clinic, Johns Hopkins and Healthline. Labs like EpiGenetics are focused on their own work and will be biased toward their own product so be aware of what they’re saying and why. They have a product to sell you and that’s their agenda – to make a profit. Keep that in mind anytime you’re researching information and ask yourself; what’s in it for them and what’s in it for me. The answer to that question can save you a lot of grief and controversy.

Remember, there is always hope.

Something Different…

And now for something completely different!

Every now and then, I like to put something on this blog that is seemingly unrelated to Chronic Pain, Fibromyalgia and/or Invisible Health. I like to change it up a little as you might remember from Fun and Games.

Today, I’m sharing something that again has been floating around the Internet forever. I’ve changed it to encompass my Children, not just my daughter as the original version goes. I’m proud of both of my kids. They’ve each gone through some difficult circumstances in their lives and come out the other side better people. I’d like to think that advice like this might account for some of it.

Here we go:

❤️❤️❤️❤️  RULES TO TEACH MY CHILDREN ❤️❤️❤️❤️

1. Make your bed every day, even if it’s right before you get in it.

2. You don’t have to wear underwear… if you’re in an accident they’ll just cut your clothes off anyway.

3. Travel light through life. Keep only what you need.

4. It’s okay to cry when you’re hurt. It’s also okay to smash (some) things; but, wash your face, clean your mess, and get up off the floor when you’re done. You don’t belong down there.

5. If you’re going to curse, be clever. If you’re going to curse in public, know your audience.

6. Seek out the people and places that resonate with your soul.

7. Just because you can, doesn’t mean you should.

8. 5-second rule. It’s just dirt. There are worse things in a fast food cheeseburger.

9. You are a woman, you do not NEED a man. Or Vice Versa

10. Happiness is not a permanent state. Wholeness is. Don’t confuse these.

11. If you’re staying more than one night, unpack your bag.

12. Never lose your fierce spirit.

13. Be less sugar, more spice, and only as nice as you’re able to without compromising yourself.

14. Can’t is a cop-out.

15. Hold your heroes to a high standard. Then, be your own hero.

16. If you can’t smile with your eyes, don’t smile. Insincerity is nothing to aspire to.

17. Never lie to yourself.

18. HER – your body, your rules. HIM – re-read that.

19. If you have an opinion, you better know why.

20. Practice your passions.

21. Ask for what you want. The worst thing they can say is no.

22. Wish on stars and dandelions, then get to work to make them happen.

23. Stay as sweet as you are.

24. Fall in love often. Particularly with ideas, art, music, literature, food and far-off places.

25. Fall hard and forever in love with nothing but yourself.

26. Say Please, Thank You, and Pardon Me, whenever the situation warrants it.

27. Reserve “I’m sorry” for when you truly are.

28. Naps are for grown-ups, too.

29. Question everything, except your own intuition.

30. You have enough. You are enough.

31. You are amazing! Don’t let anyone ever make you feel you are not. If someone does….walk away. You deserve better.

32. No matter where you are, you can always come home.

33. Be happy and remember your roots; family is EVERYTHING.

34. Say what you mean and mean what you say.

35. No one will ever love you more than I do.

36. Be kind; treat others how you would like them to treat you.

37. If in doubt, remember whose Daughter/Son you are and straighten your crown, and own it like a boss!

Share your thoughts in the comments…is this advice you would give to your children? What is the best advice you have given to them? What was the best advice you ever received from your parents, or the people who raised you?

Do you think any of these pieces of advice DO relate to having an Invisible Illness? If so, which one(s)?

The reason I ask is that I think ALL of these questions could apply to someone with Chronic Pain. For example, #1 – isn’t it nicer to sleep in a bed that’s fresh and cool and made, with the sheets and blankets “just so”? And #6 – we all know that stress increases our pain levels, so by seeking out people and places that resonate with our souls, we are filling ourselves with the kind of peace that can end up helping us heal.

Let’s look at #14 – Can’t is a cop-out. I’m sure we’ve all said we “can’t” do something. Is that really true, or are we saying we can’t because it’s too painful or too overwhelming? Well, can we try something different then, or break the task into smaller pieces? Can we ask for help? Are we automatically saying the word we can’t, without even trying first? Sometimes we do the “kneejerk” reaction, without even stopping to think if something is possible. If we give it a try we might come to realize that not only is it possible, it’s actually quite enjoyable and beneficial at the same time.

For #25, Fall hard and forever in love with nothing but yourself – well, that seems a little narcissistic but if you don’t love yourself first, can you be capable of loving anything else? I believe there has to be a level of self-love in a person in order for them to love other people. You have to know what love is, in order to give love away. And I truly believe that love is for giving away to others!!

And for #37 – well, I think that says a lot too. On your highest pain days, when all seems lost and you don’t think you can go on, sometimes you’re going to have to remember your roots, straighten your crown and own your life like a BOSS! No one knows you better than you and these are the times you have to pamper yourself like never before. Pull out all the stops on your comfort item list and do whatever it takes to feel better.

Go through the list above and see if you make Chronic Pain and Invisible Illness positives from the rest of the numbers. I was able to and even if you’re not a naturally positive person, I think it can be done.

Remember…

There is always hope!