Living with Fibro (Fibromyalgia)

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I’m often asked to describe some aspect of fibro (fibromyalgia), my chronic pain, chronic illness, etc. It’s not easy. There are so many pieces that all interconnect. As soon as I mention one thing, something else comes up… because one always affects the other, and another and another…

I recently went through my worst flareup. I’m beginning to feel like I’m coming out ahead of it now, but there’s never any total relief. My normal state is always in pain, just a lesser degree. I actually do not recall a day without pain anymore. It’s been more than thirteen years of dealing with this, day in and day out. I try not to get into it much, but you can rest assured that if I’m talking about it, it’s worse than “normal”.

What is fibro?

Fibromyalgia is a condition that affects the soft tissue, most specifically the fascia (connective tissue that attaches/covers muscles). The latest theory is something to do with nerves over-firing and not shutting off. The sensitivity to pain being much more active than pre-fibromyalgia. There may be a neurological root to this syndrome, however it is not psychological.

Fibro is so much more than that though. There are 18 tender points throughout the body that seem to be overactive at different times. During this last flareup, that lasted a few months, every single tender point was in excruciating pain. My “normal” usual involves about 6-8.

Fibro (fibromyalgia) & Chronic Pain Center

Symptoms of fibromyalgia

Living with fibromyalgia

Additionally, my muscles are always on high alert. My neck and shoulders are so tight at all times that knots form up and down my neck. It feels like that terrible neck and shoulder tension that comes during extensive highly stressful periods… only it’s 24/7. I find myself tensing muscles constantly, even in the most relaxed state. If I bring awareness to my body, I’ll notice it. And the most active pain areas are knotted up so that every visit to the massage therapist involves painful deep tissue massage in order to feel just a little relief from all the knots.

I see my massage therapist once/month. However, the benefit I feel from massage only last several days. If I could afford to, I’d have a standing weekly appointment. I also see each of a chiropractor, physiotherapist, my family physician and a pain specialist approximately monthly.

In the past I have been treated by acupuncturists, osteopaths, psychologists, social workers, natural medicine…

I have tried so many medications I have lost count. Meds for pain, meds to help my sleep cycle, meds for nerve endings…

Amitriptyline, nortriptyline, lyrica, Cymbalta, naproxen, advil, Tylenol, tramadol, Voltaren, cesamet… the list goes on.

I recently asked my pharmacy (which has only been my pharmacy for a little over three years) to give me a print out of my history. It’s several pages long. Imagine what the other ten years looks like!

I have always been one to try to avoid meds and I hate feeling like a guinea pig. Some treatments work but I have found no matter what the initial response, there is always a plateau at some point and the benefit no longer is seen.

At one point for over a year I had avoided eating all wheat, to no avail. I use a heating pad ritualistically at bedtime. I ice my flareups when they are inflamed. I have tried dry needling, “cupping”, many recommendations of supplements…

I have started logging everything, from symptoms to meds intake, foods eaten, water consumption, heart rate, stress levels, weather, my menstrual cycle, physical activity/exercise and sleep.

I live with a brain fog, and frequent vertigo. Sometimes I attribute it to lack of sleep, sometimes to the meds, and sometimes to my pain levels. In any event, my memory is nothing like it once was, and I have inconsistencies in efficiency of thought processing.

living with fibromyalgia

Photo by Paul Wesson Photography

I spent the better part of time I off recently (to rest and recover over a period of a few weeks) researching apps to log and sync most of that data. They don’t all interact, but I hope one day something will work together with them all.

Sleep is a chicken and egg kind of conundrum. I never ever get a restful sleep. My body can’t seem to get into a deep restorative sleep, ever. And yet, my pain cannot improve without some opportunity for my body to heal itself while I sleep. The pain keeps me awake, and the lack of sleep keeps the pain turned on. Chicken, egg, chicken. Egg. Chicken.

I love to be active, indoors and outdoors and I find when I have a regular routine of exercise that my health is definitely the best. But when a flareup occurs (which can be triggered by any combination of things including stress, the weather, and injury, or even just over doing it a little) I get completely derailed. And what would take a “normal” person 12 weeks to get back on track, will take me at least twice that. I need to double up the rest time and cut in half the workout intensities, and hope that something else doesn’t derail me before I get back on track.

Days like today, I feel like a complainer. A whiny, miserable, complainer. And I know there are those who look at me and think “there’s nothing wrong with you, why don’t you just suck it up?” But the fact is, as much as it gets me down, the tears just don’t flow. Living with fibro is frustrating, and often doesn’t feel like much of a life. But it’s mine and I will do so unapologetically.

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Drop me a note in the comments below, or connect with me on Twitter @ceilidhontherun or email me at trish at trishblogs dot com!

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Time passes…

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No matter how much time passes, it doesn’t get any easier. The time between hurting gets bigger, but the hurt is still there, waiting to bubble to the surface. …not always for warned of the triggers, getting through most anniversaries without too much life interruption. But this particular time of year is just hard. As much as I’ve tried to make new traditions… change my associations with this time of the year… I just can’t seem to … stop… can’t stop that train from charging through.

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From a time when the hurt was a little more fresh… raw…

Why *is* death such a hard thing to talk about?

 

 

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Drop me a note in the comments below, or connect with me on Twitter @ceilidhontherun or email me at trish at trishblogs dot com!

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If not now, then when?

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Now

Have you ever wanted something/somewhere/someone so much, so bad… that you were willing to do almost anything to get it? No matter how counter-intuitive, no matter how hard it might seem… and it wasn’t hard at all?

Acting outside of our comfort zone, especially against natural instincts is a sure fire way to see growth. What if the growth was simply an added bonus for achieving the dream?

I’ve learned over the years, that I have more strength that I have cared to test or realize… Every circumstance that has been trying has been, in almost every case, unsolicited. I find myself now, seeking, and driven towards even, a different way. I have realized a new means of getting there. A way that while challenging in theory, has turned out to be entirely doable.

And so I hope that my patience and perseverance pays off in the end. Yet, much like a young child does in developing a new skill I enjoy the process and the journey almost as much (sometimes more than) the end game.

I know where I want to end up. And each day – while living in this moment – I am ever so conscious of where I want to be.

What are you doing – right now – to get to where you want to be?

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Drop me a note in the comments below, or connect with me on Twitter @ceilidhontherun or email me at trish at trishblogs dot com!

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Coming home

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People ask me where is home – where I’m from – and I call myself a Yarmouth transplant. I moved here in middle school, and left after I marrying a local. My dad was a member of Royal Canadian Mounted Police and both of my grandfathers were in the Air Force. Our family is a bunch of gypsies, moving frequently and dispersed all over the continent and world. And now I have returned to give my children the roots that I can’t give them myself. Here, they are: <‘ti Ches’ girls> <Gros Ches’ ‘tites filles> and nieces and cousins to so many… I want my children to know their cousins in a way that I never knew mine.

Today I was asked if I like living here, my reply: I love it!

“It’s a nice town. I have my own sort of roots here; a sense of belonging; something to contribute to the community…”

While thinking about what I have to be thankful for today it occurred to me that I am so grateful for the opportunity to reclaim my roots, as deep roots as I’ve ever actually known. This town has infused me somehow. And I am thankful to be able to introduce my children to what they (will) hopefully think of as home as well.

Cape Forchu light

Former teachers who remember me in their classrooms; friends who I can swap stories and #throwback photos with; and caring people willing to help with things big and small…

More importantly though, I know people who I want to remain connected with. People who I want to be there for when they need support. And many people who aren’t known to me personally feel as if they are because we have so many common connections.

I find myself doing what every local does… first questions asked about someone unfamiliar – to whom do they belong? Who is their mom? Dad? Sibling? Spouse? Where do they live?

Often times I give my girls the go ahead to attend activities with friends based on their parent being someone I knew 17 years ago. “Oh yeah, I went to school with her mom’s sister – they’re good people….” I went to school with my next door neighbours on one side, and the sister of the neighbour on the other. My mortgage broker, plumber and mason are all former classmates of mine.

That isn’t to say that living in a small rural town doesn’t have its challenges, but there is little sacrificed for which there isn’t a huge gain. I can leave my house and go for a walk downtown at 1am without hesitating. Chances are if I run into anyone while I am walking it will include the police officers that I know by name.

People know me here. People remember me. Heck the odd person even thinks of me as being “from” here. I’ve always been a “come-from-away” everywhere I’ve lived. It’s nice to feel like this is *my* place. My home.

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Drop me a note in the comments below, or connect with me on Twitter @ceilidhontherun or email me at trish at trishblogs dot com!

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I ain’t Settling

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Something I can’t stop asking myself… what if? what if this is not my intended path? what if all of this is just a stepping stone? what if I am holding myself back? what if I never find out? what if I am just having a case of the grass is greener? what if I wait it out?
Then I wonder… will I ever? Will I ever feel like I know? Will I ever stop wondering? Will I ever be satisfied?
How do I know? I could go with the feeling of restless, annoyance, exasperation… or I could be patient and see what happens. Maybe it will all sort itself out, if I just wait… But I have never believed in fate happening TO you. I have always believed in making your own fate.
I am faced, yet again with the same questions. And in my mind, if it keeps coming up, then I have been making the wrong choice.
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It really doesn’t matter what aspect of life I look at. Work, recreation, family, love, always the same is true – life is too short to settle, and only one person can make my dreams come true.

I ain’t Settling… ;)

 

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Uncomfortably numb. AKA depression.

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I’ve written before of the experience of living with depression. It is a unique experience for each and every one afflicted. Most people I know who have lived with depression identify with the feeling of disconnect, lack of clarity and perpetual fog that I know. There are common themes, but the severity, the presentation, the duration, the triggers… all vary.

I find myself grasping at the instances of sun peaking through the fog, like each one is the only one I’ll know. While I know that many other times I can’t even be bothered to open the curtains in hopes of a glimmer of the sun’s rays – the fog is just going to roll back in sooner than later anyway.

Mavilette Beach in fog

What started my depression? It’s really hard to say. My first memory of someone suggesting I was dealing with depression came when I was newly married, almost twenty years ago. An episode brought on by relationship problems. I muddled through and came out on the other side before I even saw the counselor I’d been referred to. For years after I struggled along, seeing each of my next challenging circumstances as separate and at no time did I consider the cumulative affects.

Stress, or the experience of feeling stressed can be brought on by both negative and positive circumstances. Extra-marital affair, moving, new jobs, birth of a child, work related stresses, purchasing a home, chronic pain, returning to school, death of a loved one, new career, abusive relationship, and on, and on. Each of these can and will have cumulative affects if not managed well, affects that manifest themselves in depression and/or anxiety.

Something else that I know is that no two individuals cope the same way, nor does one necessarily cope the same way in each cycle of depression. Some become hermits, some become promiscuous, while others still turn to substances or other vices for a high. Few know of my own struggles if I don’t speak openly of them.

I work in a challenging and stressful job where I make it through most days in much the same manner as my counterparts. Most days I manage to get my children to their own obligations and interests. The house is relatively well kept. Most of my finances are in order. I ask for and accept help much of the time. On the surface I keep it together most of the time.

My physical pain flares up with every additional stress in my life, good, bad or ugly, physical or emotional. My depression comes in waves and does not seem to correspond specifically with any set timing or circumstance. Sometimes, I can’t standthe idea of of being alone. Sometimes, I can’t bear the thought of entertaining someone else’s company. Most of the time I simply feel numb.

I doubt myself often. I doubt my judgement. I doubt my decisions. I doubt my feelings. And honestly, there seems no way of really knowing which ones are valid, genuine, or in my own best interests.

More often than not, I wish for a blank slate. There are only a few significant things in my life that I wouldn’t wish to do over.

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Sometimes the best change is that which comes from circumstances thrust upon you. It’s not about what the events actually are. It’s all in what you do with them. I try not to let life make my choices for me, but take control and make my own choices, even when all I want to do is bury my head in the sand.

Sometimes the actions and decisions of others force decisions to be made and actions to be taken just when we’ve grown complacent, or perhaps even have given up.

One thing I’m learning from a few of the most challenging circumstances in my life is to stop wishing life away. I catch myself still… wishing away the day and the week, just desperate for the weekend. Wanting to make time stand still on Saturday, to not have to go back to the responsibilities of day-to-day life.

So here I am trying to get better… better at: Making the most of life. Living in this moment. Living every day like there may be no tomorrow. Going with the flow and questioning things less. We hear it all the time. Death is the only real inevitability. Whether it comes today, tomorrow, next week, year or decade. It comes.

Sun and ocean

This is where I try to make my changes. It’s not cliché. It’s a fact, we have only this moment. Grab it.

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Drop me a note in the comments below, or connect with me on Twitter @ceilidhontherun or email me at trish at trishblogs dot com!

I invite you to subscribe to my blog using one of the options available on my page (email, rss, Google Connect, like my page on Facebook, etc.)

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Depression returns

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Mavilette Beach in fog

All I know is that I want to stop feeling like I cannot focus on anything. I want to stop chasing rainbows. I want to stop experiencing pain. I want to go to bed, fall asleep, and wake in the morning feeling rested. I want to accept things for what they are, not something far bigger and insurmountable. I want to feel motivated to get out and do things that I love. I want to be fit. I want to sit and read a book for more than ten minutes at a time. And I want other things that I don’t feel so comfortable sharing here.

I want to care about things deeply, not just logically.

 

I originally wrote these words in December 2010. It wasn’t the last time I had such thoughts.

It has come back in cycles surrounding the anniversary of my mother’s death, though I think that’s more of a trigger than a cause. Most recently, I felt a rather intense disconnect and low in December (2014).

I am working on improving my state of mind. But due to a strained situation and some ongoing pain (both physically and emotionally) I found myself feeling depressed. I felt no desire. No real feeling of connection to anything. A sense of apathy. No appetite. And to be honest I just felt like I was on the verge of tears periodically throughout the day. It is by no means over, but I think I have begun traveling the path of healing.

I made an appointment to see a therapist. I went back to my previous therapist in the interim. I started a new fitness program in the hopes of getting back in shape. And I started trying to take small bites out of the straining situation(s) that feel far beyond my control. There is really no worse feeling than that of being trapped in a situation, and so I attempt to make what small choices I can. I know that the only way for me to get “un-stuck” is to try to make small changes and do new things.

 

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I have attempted to take back some of the activities that I love, from reading to photography. I started something “new” – I picked up an old saxophone, special thanks to old friends, and intend to re-learn something I knew how to do nearly 25 years ago.

My fitness program is a video series with a set schedule. I chose the least intense program offered in efforts not to cause a flare-up of my chronic pain. I have allowed myself permission to adapt the program. If I try to follow someone else’s idea of taking it easy, I will likely find myself out of commission for longer again. So I decided that even though the program didn’t call for it, I would allow a break after three days. And when the pain had not subsided enough I allowed myself a second rest day. Tomorrow will be challenging, as I know how hard it is to form a new habit, especially after losing so much headway over the past months (and years even). But I am determined to get back in shape and do so in a way that I can hopefully sustain.

This holiday vacation I managed to read an entire novel in a matter of several days, a feat I haven’t dared imagine in the last two years. I started another book and hope I can make it through this one too.

I am considering seeing my doctor about a prescription, but will wait until I see my new therapist this week. I am not convinced that situational depression necessarily benefits much from chemical treatment. I know it might provide me a bit of a breather to allow the space needed to do the work to get better. I feel like I pushed through the darkness and fog and am moving toward lighter days. But I will leave it to the expert to advise me appropriately.

Once again it is difficult to admit such weakness, although I know in doing so I can increase my chances of getting better sooner. In my experience, sharing – rather than hiding – depression makes it easier for support to become available and for me to accept help.

What do you do to help yourself out of as slump?

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Drop me a note in the comments below, or connect with me on Twitter @ceilidhontherun or email me at trish at trishblogs dot com!

I invite you to subscribe to my blog using one of the options available on my page (email, rss, Google Connect, like my page on Facebook, etc.)

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Ending Violence Against Women for my Fabulous Fortieth

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I wanted to make my fortieth birthday a special one. For a few personal reasons the anniversary of my birth does not feel like a day to celebrate anymore and I want to turn that around. I can’t afford a vacation getaway right now and I want to do something that will have a more lasting impact.

Through personal experiences I have seen how violence effects women and children’s lives. Through a variety of work experiences I have seen how often and significant the impact of that is on women and children.

November is a month to raise awareness of violence against women. I don’t have a great marketing idea to turn this campaign viral, but I hope you’ll join me in trying to make a difference for the many women and children effected.

I chose three organizations I believe in and hope you’ll select one to support. Follow this link to my Canada Helps page to make a contribution.

Nationally the Canadian Women’s Foundation supports education and outreach efforts across Canada.

Locally the Adsum House for Women & Children in Halifax and the Juniper House in Yarmouth (South West Nova Transition House Association) do the important on the ground work.

Trish

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I saw myself in the 8 signs of an abusive relationship – can you?

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Distant Thoughts

If you read the signs of an abusive relationship (linked below) you should realize this can be anyone at anytime. It happened to me. I am smart, independent and self-confident. I met a man when I was vulnerable and he manipulated me from the very first contact. Within just four months I had almost packed up my children and moved with him. WTF?

I was promised the moon and then it was taken away after I made commitments I felt I couldn’t take back. I was manipulated into allowing my children to be involved with him and his child far sooner than I was comfortable. And I watched this man snivel, uninvited, in my hallway as I desperately asked him to leave before he was heard by and upset my children.

I was regularly accused of seeking other men’s attention anywhere from in my blog posts about my mother’s death to when I took a trip to the bathroom and brought my purse with me – clearly to text other men while I was in there. And while we’re on texting in the bathroom – it was unreasonable that I would not frequently leave my conference meetings for “bathroom breaks” to text HIM throughout my day.

Ironically the conference in question was a conference for women with one male guest speaker who I happened to tweet a photo of and then was accused of seeking that man’s attention. The guest speaker was none other than the man who has spurred on all of this recent conversation about sexual assault and consent. :-/

At his insistence I destroyed the possibility of a civil relationship with my ex. He sabotaged my friendships with men… demanded photos be removed from walls of my home, photo albums and more – of all of my former relationships, including the children’s father – in the family albums. I hid them from him rather than destroy something I valued for my children’s sake.

He scoured my Facebook for any trace of my ex in old photos, status posts, etc., demanding that they be deleted. He insisted I make public posts about his own relationship with me, announcing it, bragging it up, and advertising it with photos.

He regularly went through my Twitter feed, going back months. Questioning every interaction with a man and accusing me of flirting. Never mind that – even if a joke about a birthday gift WAS a flirtation (which it was not) – I was unquestionably single at the time of the posts. He was embarrassed by the “blatant flirtations” “out there” and insisted all posts be deleted. Did I mention he didn’t even have a Twitter account himself?

I nearly had to change my phone number after he called my home so frequently that it was frightening my children.

He convinced me to perform sexual acts that I am ashamed to admit.

This same man, who accused me of lieing and cheating had his own secret that I learned of after I severed all ties with him. In addition to the craziness (I won’t even go there) that he was part of after we went our separate ways… I learned that while we were dating he was going through bankruptcy.

Weeks and months later, he still tried to contact me, newly married and all.

It comes back to me in a chaotic onslaught because that is exactly what it was like. How I got to the place I did before opening my eyes to the textbook signs of abuse that I knew so well… I don’t know. I don’t share this looking for your sympathies. I can only say, it can happen to anyone. And I am lucky I got out before it became physically violent.

Have you ever seen the signs of an abusive relationship? Please reach out to someone if you observe them – whether you are in the relationship, or someone you care about is. 

 

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Drop me a note in the comments below, or connect with me on Twitter @ceilidhontherun or email me at trish at trishblogs dot com!

I invite you to subscribe to my blog using one of the options available on my page (email, rss, Google Connect, like my page on Facebook, etc.)

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