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.

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.

Screen Shot 2018-07-21 at 2.49.35 PM

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.

Screen Shot 2018-07-21 at 3.14.39 PM

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.

Furiously Happy – A Tribute

I’m doing a tribute today to an amazing woman named Jenny Lawson. You may have heard of her. She’s an incredible writer and the author of the books “Let’s Pretend This Never Happened”, “Furiously Happy” & “You Are Here”.

 

She writes about her own struggles with depression and man, can she write!!! Her sense of humour is incredibly warped and twisted (just the way I like it), she blogs as The Bloggess (thebloggess.com) and there are several Facebook fan groups as well, one of which I belong to. We are her Tribe. We get her. We understand what she goes through and experiences, and even if some of us don’t live with depression, most of us know someone who does. For me, it’s my husband.

I wrote this piece one day when I was feeling overwhelmingly happy that I had found this particular Tribe to call my own. Here goes:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I live with several health issues that leave me in constant chronic pain: Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, Chronic Fatigue Syndrome, Forestier’s Disease, Trigeminal Neuralgia, Diabetes Type 2 (on insulin) and Bipolar Disorder. I had Total Hip Replacement on Feb. 7/17 (with my left hip needing to be done as well and possible knee surgery on my right knee later on) and am having a good recovery. I am still in pain, and always will be.

I used to think that my “furiously happy” would come when I no longer lived in pain. Its only been in the last year or so that I’ve come to realize that will never happen. I will NEVER be without pain…that’s just the nature of my body. And when I realized that there would always be the pain, I thought at first “then I will never truly be happy”. I have an amazing husband, whom I love beyond measure. I have 2 grown up kids that I still worry about and three grandsons that I never get to see because of distance. We keep in touch though with social media, and that’s a good thing, but it’s far from being furiously happy.

Because of my health, I had to give up a career that I adored…Admin Support at the Executive level as well as being a Certified Event Planner. I loved my job with every fibre of my being, but came to a point where I physically couldn’t manage it any longer, and with my chronic fatigue, would never be able to manage again. Everything in my life seemed to be about loss…losing a job, losing my hobbies, losing professional relationships, losing friendships, losing mobility, losing at life.

Hubby and I decided in 2013 to make a move to Vancouver Island from Calgary after the weather in Calgary became too much for my body to handle…too cold, too much snow, too long of winters, too icy…too, too, too. We moved here without a job for Ray or even knowing what our apartment looked like – we rented it sight unseen. Slowly, we started making Victoria our home – walking by the ocean, going for coffee or dinner at various places. I soon realized how much I loved it here, even though there were really no friends to share it with (two couples and one girlfriend and that was all that I knew – and even then we rarely saw each other).

One day, I found the Jenny Lawson book Furiously Happy. I have never laughed so hard in my life. I gave the book to Hubby to read and HE has never laughed so much…and he’s not one to show much emotion ever, good or bad. But he laughed and often. From there, I found her website and her other book and then all of sudden, there was THIS group. People like me. People who were struggling and depressed and suffering mentally and physically and I thought to myself “God, thank you for bringing me home”. Because I realized quickly that I seemed to be good at encouraging other people in their struggles, so I didn’t have to think about mine. I could offer advice or words of comfort, or just the right kitten picture and something would change for the good in that other life. And MY life felt better because of it.

And then I knew, the way that I became Furiously Happy was by being myself and sharing my life with those of you here who needed what I had to offer…a shoulder to cry on, a hug, some understanding, appreciation…whatever you want to call it. I became Furiously Happy because OF Furiously Happy. And now I have my Hubby and my family and my friends and my volunteering AND MY TRIBE!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Now, the reason I’m giving a shout out to Jenny today is that she has been undergoing a new treatment for her depression called Transcranial magnetic stimulation (TMS).  It’s described like this: (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective.

Jenny started treatment 2 weeks ago…and people…IT’S WORKING!!!!!

I want you to go to her blog and read all about it. If you know anyone who is experiencing major depression in their lives and no other treatment has worked, then this MIGHT be an answer for them too. I admire this woman so much, and I’m so delighted that this is working for her, I simply had to share. Please go check it out, buy her books (you will laugh, trust me) and find your tribe if you haven’t already.

If you live with Chronic Pain, Chronic Fatigue, Fibromyalgia, or Invisible Illness of any kind, you can’t go through it alone. You need to find a support group. If you look me up on Facebook, I can introduce you to the Fibro group I belong to. We support everyone who is in pain. And if you’re a fan of Jenny Lawson and want to join the group on Facebook I belong to, use the contact page on the blog here, and let me know. And remember…

there is always hope