Fibro Warrior of the Week (#22)
FWOTW: Shannon Hutcheson
Location: Greater Toronto Area, Ontario, Canada
Mantra: May I be free from inner and outer harm. May I be peaceful and happy. May I be healthy and strong. May I take care of myself joyfully.
Shannon’s outlook on life bears testament to the strength of the human spirit. Despite a long list of medical problems that have interfered with her dreams, work, and just life in general, she refuses to be broken. In fact, Shannon loves life. Not something that every person with Fibro can say. Her husband and cats are her joy. Her writing is her gift to us all – make sure you check out her stories below! -FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Shannon: I’m a 43 year old woman living with my soulmate these last twelve years in Toronto, Ontario. I was born in British Columbia and grew up in Kamloops, BC, where the hot summers are dry and the winters fairly mild yet awesome enough to have the best downhill ski powder in the province.
I met the love of my life online, about fourteen years ago now. After a few years of long distance telephone bills, I moved to Toronto permanently and have been here ever since. I am never going to get used to the humidity here! I miss BC weather so much.
No kids. I have had endometriosis since I was eighteen years old. I knew it was going to be a difficult thing to conceive. When I was in my late 20s that really mattered to me, to be able to have kids. Eventually it just wasn’t a top priority. When I finally met a man I’d consider having kids with, we were both not interested in that. It was never an issue with us, or our relationship. So we have cats instead!
FD: When did you first suspect that something wasn’t right? What happened?
Shannon: I was a very active person who played many sports from softball to slo-pitch, curling, and downhill skiing. After two whiplashes (one skiing in Jasper, AB; the other, a car accident in Kamloops), I started experiencing a lot of nerve and neck/back pain. Yet is was manageable and I continued to work. As the years went by, I had constant headaches, back and neck pain, and a lousy pinched nerve that gifted me with vertigo whenever it felt like it. I had always had fatigue issues and had started taking caffeine pills to stay awake at work. This wasn’t unusual for me and I’d been doing it a year or so at that time. Though I had been prescribed a CPAP machine for my severe obstructive sleep apnea in 2005, it never really helped with the fatigue.
When the pain became intolerable, I had just started a new job, been promoted, had lost roughly sixty pounds (over eight months or so) and was starting to really enjoy life again. Then I started having intense, frightening chest pains. I could not stand, sit or lay down without terrible pain. It was a very scary time — my mind raced with worst-case scenarios — because no one could figure out what was causing the pain. Many, many tests were taken.
FD: When were you diagnosed with Fibromyalgia?
Shannon: I was diagnosed with FM in 2011, by a rheumatoid arthritis specialist. I also found out that I had arthritis in my chest, feet, and wrists or hips (I forget which now.) My primary complaint was intense chest pain that turned out to be non-heart related. Costochondritis, for me, is a constant pain that never goes away. I have had a grape sized lump in the middle of my sternum, between my breasts, that is thought to be a result of the costochondritis. Perhaps swollen tissue or cartilage After seeing a surgeon (who said it was probably just cartilage) and having a mammogram, still no one knows what it is or what is really causing it. It just feels wrong to me, like it isn’t supposed to be there.
FD: When you received your diagnosis, how did it affect you?
Shannon: I felt vindicated, that it wasn’t all in my head. I finally knew what the cause was of all the pain and fatigue. It had a name and many of my illness symptoms or health quirks (as I considered them) over the years suddenly made sense.
FD: Since then, how has your outlook on life changed?
Shannon: Well, after a year of so of grief, anger and shock that my life was so dramatically different, I forgave myself. For being sick, for being unable to control what happened to me, when or why. I let go of being concerned what others thought about chronic pain and Fibromyalgia. Thanks to my hubby, who is my rock and keeps me grounded and takes such good care of me.
I am far more patient than I used to be. I have learned to pick my battles and only worry about the things I CAN change. I try not to think of the future anymore because it is so hard to imagine anything being any different than it is now. My constant pain and fatigue with a bitter loss of a second income that has forced us to live precariously on my hubby’s income alone. It’s not enough, despite our moving to a single bedroom apartment in a rougher part of town where the rent is cheapest.
So while I’m not angry about my health and situation anymore (though still understandably pissed about the looooong process of disability application and support), I have a hard time feeling more than bleak about our situation getting any better anytime soon. Thank goodness for my hubby’s excellent sense of humor, and mine.
FD: How does Fibro affect your day to day life?
Shannon: I’ve gained that sixty pounds back and then some. Being inactive and on several medications that are notorious for weight gain is a real challenge. Where the majority of my pain is in my torso, my back, my neck, it is very difficult to do anything that requires movement of my arms – especially if I have to lift them above my head or across my body.
It is so hard to explain to someone who has never experienced chronic pain why exercise is so difficult. It’s not a matter of doing a few extra sets and feeling a “burn”. It’s more like sharp, stabbing pain that your body is using to tell you NOT to do something, emphatically.
After the pain, the fatigue is often profound and undeniable. I have take naps just to revive my focus. Sometimes I spend an entire afternoon staring at a wall because it’s just beyond my ability to focus. From the illness or the medication, take your pick.
The thing I hate most is losing words. I have read books avidly since I was a kid. I probably read two to five a week now — sometimes distracting my mind is all I can do to help endure bad pain days. Yet sometimes I just can’t think of a common word when talking to someone. Forcing me to play “word charades” to help the other person prompt ME to remember the damn word. It is so frustrating and it makes me feel stupid when I know I am a very intelligent person.
FD: What can’t you do anymore because of Fibro?
Shannon: I cannot stand or walk for any length of time. Enough to get to and from the car or doctor’s office. But that will often result in several days in bed, just to recuperate. I cannot do anything that requires repetitive minute movements with my hands. Like writing by hand. Going up and down stairs is a terrible experience.
Just taking a shower is a lesson in agony. Forget being able to stand long enough for it— unconditioned muscles and inactivity will do that to a person— washing my hair is so painful to do. So being able to take a shower daily is definitely something I miss. I refuse to ask for help, but suspect that eventually I will have to. I yearn for being able to take an epsom salt bath again, but I cannot get in or out of the tub by myself anymore. It’s just too painful.
So there’s not a lot I can do that cannot be done sitting down.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Shannon: Having more compassion and patience than I ever imagined. Having an invisible illness forces you to realize that you cannot tell a person’s story just by looking at them. You cannot possibly imagine what their personal challenges and demons are. So I judge a lot less, if at all anymore. People do what they have to do to survive. Sometimes that means being overly direct, rude and aggressive. I can forgive much quicker now. Even myself.
FD: What has been your experience with seeking medical treatment for Fibro?
Shannon: My personal experience in dealing with health care professionals for FM treatment has been fairly positive. That is due to the dedication and faith of my family doctor (who unfortunately moved to Alberta last year). She spent a lot of time educating herself on Fibromyalgia and she even went to seminars, spoke to other doctors who dealt with FM patients. I just adored her and really miss her as a doctor.
I have had very little positive experience, however, with the ODSP (Ontario Disability Support Program) or CPP Disability (Canadian Pension Plan Disability). Both have “lost” documents, sent letters I never received and rejected my initial applications. At this point I am going to have to start all the hell over again. I’m taking one last stab at it with a legal aid lawyer familiar with the process.
FD: How has Fibro affected your relationships, friends, family, partners?
Shannon: Not one to make friends outside of work and no longer working, the friends drifted away. My husband has arthritis, suspected Fibromyalgia (some 10 years ago now), and an immune deficiency, so he understands chronic pain, too. We sometimes argue and grump at each other on bad pain days, but our relationship is still strong and loving. I am so grateful that he does everything he can to help me endure those really bad pain flare days. Let alone keep up with the housework, grocery shopping, and errand running. He is my rock and keeps me sane.
My family has been very supportive. Unfortunately his has not.
FD: What is the biggest challenge you face living with fibro?
Shannon: Pacing myself. Trying NOT to multi-task and keep busy. Slowing down and “taking it easy”. It’s a constant and daily struggle. I was the type of person who got out and got it done. Do all the errands on the same day. I went to work to work, not socialize. Stayed as busy as possible. So I am constantly pushing my energy envelope and causing a “push-crash”. This is something I’m still struggling with.
FD: What inspires you to keep on fighting?
Shannon: I’ve suffered with depression for most of my adult life. I spent 3 years pretty much homebound with agoraphobia and panic attacks. It was a very dark time of my life. Having experienced that, I told myself “never again!” and refuse to let myself fall into that dark pit of despair. Even on my worst days, I somehow manage to keep a positive attitude. I choose to go on and not wallow in self-pity or rail against my future. I just don’t have the energy, LOL.
Knowing that there are so many other Canadians that suffer as I do, but don’t have an understanding or compassionate doctor keeps me going too. I hope that by blogging about my experience and being completely open with the challenges I face might help even one person find their way to managing their pain and fatigue.
Being a vocal advocate for Fibromyalgia, chronic pain and fatigue helps bring awareness to the disease. I have met so many wonderful people in the UK, USA, and Canada that suffer as I do. Knowing someone is always there, online, 24/7 to talk to via Twitter helped me so very much when I was first diagnosed. Thank goodness for the internet, without that constant support I’d have been in a much darker place.
FD: What advice do you have for other people who are living with Fibro?
Shannon: With knowledge comes power. People with FM have to educate themselves, and sometimes their own doctors. You need to be your own best advocate and cheer yourself on. If your current doctor isn’t getting you the help you need, or prescribing pain releif medication you deserve, find one who will. Ask to see specialists. Be a royal pain in the behind if you have to. It’s YOUR life and no one else should dictate how you should live it, not even your doctor.
Speak up and be heard. Don’t stop until someone gives you the help you need. You deserve it!
Reach out to others on the internet through Twitter or Facebook (though I prefer the instant, live correspondence you get on Twitter.) Use the hashtags #spoonie #fibro #fibromyalgia #chronicpain to find others who are talking about those subjects on Twitter. You’d be surprised how many there are, all eager to help support you and comfort you on your worst pain days or just chat on those rare “good pain” days.
FD: Do you have a funny Fibro story you can share?
Shannon: Haha yes. I wrote two posts on my blog about that, actually:
Fibromyalgia is Funny
I woke up hours and hours past when I should have re-dosed my pain medication. I stumbled, grimacing in agony, toward the bathroom. Somehow I noted from the corner of my eye that my hubby was chopping up something on the kitchen counter. Maybe making breakfast, dinner? I didn’t know, I wasn’t really conscious yet. It was daylight, but I didn’t really know what time of day. I knew nothing but the pain I was in. That and the sneaking suspicion that I had slept far longer than the few hours I had been getting…
Read the full story here.
That’s It, I’m Calling The Cops!
This is the third night some punk has been running around the cul-de-sac lighting firecrackers. Every damn evening and it’s so loud the cats panic and scramble. So after 3 nights of this crap I go searching for the local police dept email address, and find it. I whip off a brief admonishment of how they obviously haven’t been able to catch the little punk after 3 nights and that they should send someone over to deal with it because he’s lighting the fire crackers RIGHT NOW…
Read the full story here.
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