A New Piece Published!

Wow!

I’ve just had a new piece of writing published on the Pain News Network as a guest columnist. I wanted to write about how we grieve when we lose so much of our lives to a diagnosis of Fibromyalgia, Osteoarthritis, MS, Ehler-Danlos, Lupus and other Invisible Illnesses.

Now, I saw information about the Pain News Network on the blog of someone I follow. I looked them up and saw that they accept articles from guest writers. I contacted the Editor to see what the requirements were and he told me that basically anything to do with real life and pain, as long as it hadn’t been previously published. So I sat down, thought for a few minutes and literally banged this out. He thought it was good enough and voíla, it was done!

Here is the link, and I would love your thoughts about it in the comments below. I guess I’ll have to update my “I’ve been published” section…this is my first publication outside of The Mighty!!!

I’m so excited and I’m really damn proud of myself!

https://www.painnewsnetwork.org/stories/2018/8/8/grieving-a-former-life

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

Let’s Make One Thing Clear…

Welcome!

FIBROMYALGIA IS REAL BUT YOU WILL ALWAYS FIND DOCTORS WHO DISAGREE

If you’ve been to my blog before, you know that I live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. If this is your first visit, you now know something about me. I want it made very clear that YES…Fibromyalgia DOES exist.

Fibromyalgia-Signs-Causes-and-Treatment

Walk a mile in my very painful shoes and you will know exactly how painful it is to live with Fibro. Every one of my muscles feels like it’s being dragged in concrete and every joint feels like it’s been twisted, then put into a mechanical vise and clamped as tightly as possible. I get shooting pains in parts of my body that I didn’t even know existed, for no reason at all. My arms burn and my hands and feet tingle or go numb.

The brain fog is awful…forgetting what you’re saying in the middle of a conversation is so embarrassing. I can’t remember what I ate for breakfast. I can’t remember if I ATE breakfast. I take medications that cause horrible side effects like weight gain and shaking hands and brain zaps…a sensation like an electrical shock that runs across your brain and where you can feel AND hear a literal buzz. I am constantly exhausted by the lack of sleep that comes with Fibro. It’s never refreshing and it’s never enough.

Yet, with all of this that I and my fellow Fibromites go through, there are still doctors who say “it’s all in your head” and “it doesn’t exist”. Well, tell me then…what DO I have wrong? All my tests come back negative for everything you tested me for…but I have all 18 of the 18 tender points that indicate Fibromyalgia is what I have.

Here are things I’ve had to say to friends and to DOCTORS who have questioned me about Fibro and Chronic Pain at various times over the last 10 years:

1. This is not “just in my head”. My pain is real.

2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.

3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.

4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).

5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.

6. You think I’m faking being sick, but really I’m faking being well.

7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.

8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.

9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.

10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.

11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.

12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.

13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.

14. Some days, even my hair hurts

15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.

16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.

17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.

18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.

19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.

20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.

Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me. But, as I always say…

there is always hope!

Wishing While I (Don’t) Work

It’s Monday, and I wish I was at work.

Now a lot of you are probably thinking I’m crazy, and I am. While you’re getting up early in the morning to face the rush hour commute to go to a job you may not even enjoy, I could still be snuggled in my bed, fast asleep without a care in the world, right? Well, that’s the scenario you probably have in your head, but it’s far from the truth. As a Person with Chronic Pain (PwCP), I’ve probably been awake half the night because pain wouldn’t let me sleep; every muscle feels like concrete and every joint feels like someone has twisted it, put it into a machining vise and then clamped it three times tighter than necessary.

My brain hurts too…I want to be going to work with you. I loved my job prior to going on Long Term Disability (LTD) and the jobs I held before that. I was an Administrative Specialist at several different companies, mostly supporting Retail Operations and the people who managed the work; Directors, District Managers and Store Managers. In the past, I’ve worked for Rogers and Bell and my last company was The Forzani Group, now known as FGL Sports.  I supported the group that ran the former Sport Mart stores (now closed), but am still considered an employee of FGL Sports while on LTD.  I receive an employee discount and recently celebrated 10 years with the company.

I worked with an amazing group of people. I loved going into my job every day, knowing it was going to be challenging and fun and never knowing exactly what the day might bring. I organized team training events for Store Managers, travel and training for the District Managers, travel for the Regional Manager Rob Hillier and kept the Director, John Hould on track for his daily activities.

Then came the days when work started to become difficult. Too difficult. I had been doing all of this under the radar of Invisible Illness, which none of them knew about but it was starting to become an issue. Things that used to come easily to me became a struggle. I was famous for remembering things without needing a list and suddenly I was carrying notebooks with me because the Brain Fog was so bad. I would stop conversations in the middle of speaking because I forgot what I was saying. My pain levels were getting higher and higher but I refused to use a cane at work for my bad hip to ease the pain as I didn’t want to be perceived as being weak or incapable of being effective (this was prior to my right hip replacement). I couldn’t concentrate during meetings and even typing became a challenge – it still is to this day.

Once all the Sport Mart stores were closed, there wasn’t really a job for me any  longer, so the HR department encouraged me to go on Short Term Disability while I figured out my health issues. Short term became Long Term, and I never went back. My last day of work was in October of 2009. I started with the company in February of 2008. That’s right…I’ve been on Disability with FGL Sports for over four times longer than I worked for them. It was distressing for me to have to leave, because I loved the work and I was very good at what I did. My identity was wrapped up in my work and had been since I first started my career in 1991. When I found myself at home on leave, I didn’t know what to do with myself. I slept a lot in the beginning which was healing, but after that, I didn’t know what to do. I felt invisible, as I’ve discussed on this blog before. And being invisible can be a very painful thing. People accused me of not wanting to work, that this was an extended vacation for me, and that was really hurtful. If they could see inside me, they would know how very much I wanted to be back at my desk, with meaningful work to do. The mistake I made is that I didn’t go around complaining about my health at work, so no one knew how badly I was hurting except for a couple of select people in HR, plus my bosses John and Rob. 

I’ve asked my friend Tori Martin if I could share a quote here that she recently posted on Facebook and she graciously gave me her permission. This is what she said:

“STOP suggesting that people with disabilities of ANY kind just aren’t trying hard enough.

There are VERY few people who don’t want to work and contribute in a meaningful way according to society standards. Additionally, being able to work is NOT the ultimate measure of a person’s worth. Frankly, I am much more impressed at how a person treats others than what kind of work they do.I myself am unable to work due to physical limitations and it drives me crazy sometimes. Guess what though, I still have an incredible amount to give! I contribute to society through my photography, through having a huge heart that shows so much love and concern of others, through helping others, through occasional teaching of archery which helps many find confidence and enjoyment in physical activity. I contribute by paying taxes, voting, getting involved in local groups and causes and supporting local businesses. I am NOT a waste of space. And not that it’s anyone’s business, but I worked from the age of 10 until I was 39 and was literally bed-ridden for 2 years. My dr’s have been trying to help find ways of giving me back quality of life and things are so much better than those first two years, but nowhere near where they need to be to hold down even a part-time job. Telling people with mental or physical disabilities they have no worth if they can’t work is b*llshit and needs to stop. I am disgusted to have to say this after reading comments on a friend’s post. Apparently compassion and empathy is something that some folks just don’t have.”

 I think Tori really nails it with that comment. She lives with Rheumatoid Arthritis that really affects her hands and I know for a fact that she would love to be working if it were possible. Her friend John Hewak responded with this reply to her post: 

 “What makes it worse is that we feel the need to justify ourselves, due to both real and perceived judgement from others. People say things like “must be nice”, or “how can I get that?” Well first get f*cking sick, really sick, lose almost everything, navigate the tortuous and torturous health system, marshal up a posse of docs, specialist, therapists etc who validate you, get a lawyer, get on welfare, go through the painful application procedure and wait months to hear back while you sink into poverty. Most applicants are rejected first time . Repeat and rinse. If the institutional, bureaucratic, legal, and medical stars align, you might be accepted, in which case you get $1,000 to live on monthly., while you struggle with pain and alienation on a daily basis. Try that for a while. Wow, it’s so great not to work! Living the life of Riley.”

And finally, a third friend named John Poulson replied:

“I have found that people who give the most are the ones who have experienced hardship the most. People who have never experienced hardships have absolutely no idea or clue of what life really all about. It’s not about “things” but the experience you lend or give to others. Having compassion and showing that there are people out in the world that do care. Live; love; laugh. It’s the tears that makes one appreciate the good things in life. That’s my motto. ❤️❤️

It’s hard to be at home when you’d rather be out earning a living. Everyone thinks we have it so great, but when you’re housebound and feeling like crap, there’s nothing fun about it at all. We tend to be forgotten by our friends and sometimes our family members as well. We don’t get to go out and do “fun” things whenever we want – our time is generally taken up with Doctor appointments or physiotherapy treatments, etc. anyway.

So, to wrap this up, don’t forget your friend or family member who lives with Chronic Pain from Invisible Illness. Call them, ask to stop by for a visit, or to take them out of the house for a bit, whether it’s for lunch, or just a drive. They will let you know what they’re up for and how much energy they have. Even if they say no and they’d rather stay home, just keep in touch. That’s all we’re asking for. And don’t assume we’re being lazy. Trust me…most of us would rather be working if it were possible. 

At least I would. 

Remember…there is always hope.