Hello and welcome back to Shining The Spotlight on Chronic Illness & Disabilities. Today’s post features Pamela. A fellow spoonie who has previously featured on Parenting In Pain.
Introduce Yourself And Tell Us A bit About You?
I live in Langford, BC, just outside of Victoria. I’m happily married to my amazing husband Ray and we are proud parents of 2 grown kids and three wonderful grandsons. I’m a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com I also write for The Mighty, The UnChargeables, PainResource.com and various independent publications.
In addition to blogging, I’m an active volunteer with the Patient Voices Network in BC. Outside of PVN, I’ve also done volunteer work for Island Health as a Patient Advisor, was on the Advisory Committee for Opioid Guidelines in Canada, and was a summer volunteer with the Downtown Victoria Business Association’s Busker Festival
I currently sit on 4 different committees:
- The Clinical Resource Committee for the BC Emergency Physician’s Network,
- The Laboratory Quality Council for Vancouver Island, BC
- The Oversight & Advisory Council for Patient Voices Network
- The Surgical Care Quality Measurement Group.
Additionally, I am a member of the BC Patient-Centred Measurement Blended Survey Consultation Group. I am passionate about Quality Improvement and seek out continual educational opportunities to learn and grow.
Chronic illness(es)/disabilities I have?
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)
Pelvic Adhesions/Scar Tissue/Chronic Pelvic Pain
Bone spurs on fingers on right hand, plus inflamed tendons in right palm
Brachydactyly Type E
My symptoms/condition began?
I have had Fibro since my teens and arthritis since my early 20’s and was finally officially diagnosed with both in 2008. I was diagnosed with Diabetes in 2010, with Gastroparesis in 2014 and formerly with Trigeminal Neuralgia in 2015 though I’ve had symptoms for many years prior. Most other’s were diagnosed in the mid to late 2015’s and Brachydactyly is a genetic birth defect affecting my fingers and toes.
My diagnosis process was?
Frustrating in many ways and yet, easy at the same time. Many of my doctors assumed I had Fibromyalgia but no one would actually commit to saying that I did, until I finally saw a Rheumatologist in 2008 who confirmed it along with my osteoarthritis diagnosis at the same time. He told me I had one of the worst cases of Fibro he’d seen in a long time – all 18 trigger points were flaring. He first started me on Lyrica, and after a tremendous weight gain in a short amount of time, we stopped that and switched to Cymbalta, which has worked quite well for me. It took me a long time to lose all the weight as I am short and everything shows easily.
The hardest part of living with my illness/disabilities is?
The first hardest part was having to give up working. I was at the peak of my career as an Administrative Specialist and Certified Event Planner, and was poised to take on a role in the C Suite working with the President of the company. I was in so much pain though and suffering from such severe brain fog that I just couldn’t function to the level that was necessary. I was renowned for never needing a notebook to remember facts and details about things and all of a sudden, I couldn’t remember the most basic stuff…I’d lose track of the conversation we were having mid-sentence. It was embarrassing, frustrating and scary at the same time. I started needing to use a cane in the office because my balance was atrocious and my hips were so sore that walking was an ordeal. When my one department closed, HR suggested I take Disability, so I did, not realizing I would never go back to work again.
The hardest part now is finding the right balance between resting/pacing and living my life as a volunteer Patient Advocate. I fight Chronic Pain and Fatigue every single day, so pacing is important to me. I can’t always get to all the chores in a day, and I’m a very active volunteer now, but with flexible hours – I do a lot of committee work so may have one meeting every 3 months and for another group, only meet with them bi-monthly, etc. I want to spend time with my husband on our motorcycle so everything has to be accounted for – will I have a rest day planned for the next day? Then yes, I can go for the ride today. Did I do some chores today? Then the ride will have to wait. It’s frustrating to not be able to do what I want when I want, but I know if I do too much, I’m going to pay for it later with pain and fatigue beyond what I typically live with on a daily basis.
People assume that?
People assume that because I’m so involved in my volunteer work and my blogging that I can’t be all that ill, but they don’t see the effort that goes into maintaining those activities. I have insomnia and generally only get 2-3 hours of sleep at night, so my blogging takes place at 3 am. I post several posts ahead every month so when I have days of high pain, I don’t have to worry about a posting deadline…I’m well ahead of the game.
When it comes to volunteer work, two of my groups are held in Vancouver, so I fly in for meetings. People assume I must be just fine if I can fly into meetings, but they don’t see how even a half day meeting can see me in bed for two days afterwards. I just don’t talk about that part of my life. I focus on the positive side of things…the outcome of the meetings or what we accomplished, not how exhausted I am on the short flight home and how I crawl into bed as soon as I get through the door. Why do I push myself? Because I believe in what I’m doing – improving healthcare for everyone, acting as the Patient Voice so that Health Care Organizations can make meaningful changes in how they do things. It’s all about making things better for all Patients – that’s my passion. So, a little sacrifice now for the longer good.
A typical day for me involves?
Breakfast of yogurt and granola, lots of time on the computer, generally a nap during the day, lots of emails relating to volunteer work, and then if it is a committee day, either a WebEx Conference all or a local committee meeting, or I’m flying to Vancouver for a meeting (for a half day meeting, I fly in early in the morning, if it’s a full day meeting, I fly in the night before). For one of the committees I’m on, it involves updating Patient Information Sheets that you received upon discharge from the hospital, so I can work on those from home.
On non-travel days, I make dinner for my husband and I for around 6:30 when he’s home and then we enjoy a quiet night together. Bedtime is early (9pm) for both of us as he’s up by 4:30am and I’m usually worn out. I sleep for about 2 hours and then I’m up for the better part of the night, so that’s when I do my blogging and such. And then the day begins again.
The one thing I cannot live without is?
God, my husband and my cat!
Being ill/disabled has taught me?
Being ill/disabled as taught me that I’m only as limited as I want to be. It has taught me that no one is immune from having bad things happen, but you can make good things come from it. I thought life was over when I had to give up my job, but I honestly believe I’m having more fun as a volunteer and blogger than I did as an Administrative Specialist. I’m my own “boss”, I call the shots on what I want from my day. I’m starting to become known in the volunteer organization I belong to, and I’m getting opportunities for engagements that are pushing me to advance my skills, such as public speaking. I’ve attended conferences and educational sessions and been given accolades for the work I’ve done. I give my commitments my all, and it shows.
What advice would I give someone recently diagnosed?
Allow yourself to grieve for what might have been, but don’t stay there. There are plenty of new ways for you to show what you’re made of – build a new dream and go for it.
My support system is?
My husband, my kids, my close friends and my online circle, plus my doctors and my cat.
If I had one day symptom/disability free I would?
Go for a hike with my husband, then a motorcycle ride afterwards followed by a great dinner and a movie!!
One positive of having a chronic illness/disability is?
Being able to give back to the community and help so many others who are going through what I go through. My blog is the biggest factor here. I’ve received so many wonderful comments on posts that what I’ve written has really helped someone. I wouldn’t have been able to do that if I wasn’t walking the same path.
The spoonie/disability community has been?
A huge source of comfort and help!! It’s so nice to be a part of a group that “gets it”.
My social media:
Linked In: https://www.linkedin.com/in/pamelajessen
Thank you to Pamela for taking part in Shining The Spotlight and helping raise awareness of chronic illness and disabilities. Be sure to check out Pamela’s blog and her social links.
If anyone would like to be part of the Shining The Spotlight series, don’t hesitate to get in touch. I am always happy to share others stories of disabilities and chronic illness.