For Invisible Disabilities Week, I reached out to all of you spoonies to get involved, and of course many put forward their interest! Here is Pamela, a lovely spoonie blogger who tells us her story!
What is your name?
My name is Pamela Jessen, and I blog in two locations [Pamela Jessen + A Chronical of Hope]. Both blogs talk about my life with Chronic pain, Chronic Fatigue Syndrome, Fibromyalgia and Invisible Illness.
Tell us a little about where you’re from?
I live in Langford, BC which is a small city outside of Victoria, BC Canada Victoria is famous for its tourism including it’s Victorian feel, the beautiful Butchart Gardens, The Empress Hotel, the Parliament Buildings and the amazing eco-friendly ocean tours for whale watching.
Tell us a little about you! What do you enjoy doing?
I like to read and craft but most of my time is spent on the computer working on my blogs, writing posts (and poetry) and staying on top of my media like Facebook and Pinterest, etc.). I also do a lot of volunteer work which I’m really proud of. I belong to an organization in BC called Patient Voices Network (PVN), where everyday people have a chance to make change in how health care is delivered in our province. I currently sit on three committees – the PVN Oversight & Advisory Committee, the Clinical Resource Committee for the BC ER Physicians Network, where I help to update all the Patient Information Sheets you’re given at checkout in the hospital, and the Laboratory Quality Council which oversees all the Labs on Vancouver Island, as well as all the Medical Blood Collection Sites.
Tell us about your chronic illnesses! Anything undiagnosed or are you going through diagnosis right now!
I live with 14 separate health conditions, most of which cause Chronic Pain. Nothing has yet to be diagnosed, but there are some things on this list that are yet to be treated, such as the Pelvic Adhesions and the Bone Spurs on my hand (there are referrals in to doctors for these). Some things are untreatable – the Brachydactyly is a genetic condition where my ring fingers and toes are missing bones leaving them shorter than they should be, and the Forestier’s Disease is a particular type of Bone Spur on my spine that can’t be treated.
The list is as follows:
- Chronic Pain / Chronic Fatigue Syndrome
- Fibromyalgia / Myofascial Pain
- Osteoarthritis (in all my major joints)
- Forestier’s Disease (aka D.I.S.H.: Diffuse Idiopathic Skeletal Hyperostosis)
- Type 2 Diabetes (on insulin)
- Trigeminal Neuralgia
- Bipolar Disorder
- Pelvic Adhesions/Scar Tissue/Chronic Pelvic Pain
- Bone spurs on fingers on right hand, plus inflamed tendons in right palm
- High Cholesterol
- Brachydactyly Type E
- Raynauds Disease
What would you say is the worst thing about chronic illness?
I think the way it isolates you from the world and the fact that the pain never goes away. I can learn how to live with intractable pain, but you lose a lot of friends when you become chronically ill. They don’t know how to handle it when you’re no longer “you” – the funny, outgoing person you used to be. They say they’ll be there for you, but they aren’t, because they’re uncomfortable with this new person you’ve become. They get tired of hearing you say you can’t do anything with them anymore because you hurt, and so they find other friends, leaving you more isolated than ever. It takes a strong person to have chronic pain.
Are you a part of the spoonie community? Have you learnt anything from it?
I belong to several online groups and they are vital to me. I can be myself and everyone understands where I’m coming from. I can say “it’s a high pain day” and people get it. They ask “what are you doing for yourself to help you?” or “have you tried making sure you’re hydrated enough” or asking about other things they know might help because they’ve all been there, or are there. Know one knows like a Spoonie knows.
What is your support system like? Do you have people around you who support and help you?
My husband is my main support person and he is amazing. He totally gets me and often knows better than me when I’m in a flare or when one is going to start. He knows my moods and the little things I do before one, and can gently make suggestions that help me to feel better. He rescues me when I need it. We were recently out on our motorcycle and I ended up having wicked back spasms that were so bad, I went to the ER of the little hospital on the Island we were on. He took the ferry home to our place to get the truck to come back and get me, knowing I couldn’t ride the motorcycle home again. That’s the way he takes care of me.
What is one achievement you have, that you thought you wouldn’t with chronic illness?
I’ve been lucky enough to receive some public recognition of my writing from my blog in the news. I had a piece published in the Pain News Network (https://www.painnewsnetwork.
org/stories/2018/8/8/grieving- a-former-life) and the Globe & Mail in Canada interviewed me for a story about having a hip replacement in your 50’s (https://www.theglobeandmail. com/life/health-and-fitness/ article-what-its-like-to-have- a-hip-replaced-in-your-50s/). I’m also being interviewed for an upcoming podcast with Sharon Sayler of The Autoimmune Hour on Life Interrupted Radio (http://www.blogtalkradio.com/ lifeinterruptedradio).
Can we go and follow you?
yes, my Social Media is as follows: