Confessions of a Spoonie || Susan Shortt
Hi! I’m Susan Kleven Shortt!
I have chronic physical and mental illnesses. I write about the challenges of living with illness, as well as what is helpful to me, and the hobbies and interests that keep me positive. I am a social service worker and have also worked as an educator.
My passions are animals, learning, reading, music, humour and nature.
I hope to share my story and encourage other people to find out what works for them. I like to learn from other people’s stories.
What condition/s do you suffer from and when were you diagnosed?
Fibromyalgia – officially in 2011 but have had it for longer
Osteoarthritis – 2006
Anxiety – as far back as my first memory
Depression – first in 1990
What are the main symptoms you suffer from?
Muscle pain, joint pain, poor sleep, fatigue, digestive (mostly from meds), social and general anxiety disorder, recurring depression
What 3 things have you learned about your condition since being diagnosed?
- It is not degenerative.
- There is no cure, and no good treatment.
- It is an invisible illness, and many people and medics are skeptical about its validity.
In what way has the NHS supported or not supported you?
I live in Canada. We have OHIP. It covers basic medical care, but nothing “extra” like massage, chiro, physio. I can’t afford these treatments although they would probably be helpful.
What is the hardest part about your illness, in your opinion?
It is relentless and impossible to plan around. Not being able to talk about it with others for fear of being ridiculed and judged.
List 3 phrases you hate hearing off other people about your condition.
- It’s a mental condition.
- Have you tried______? (fill in the blank: chiro, diet, drugs, counselling, etc.)
- I have back pain too.
List 3 things you wish people would say/do instead.
- That sucks.
- What is that like?
- Sorry to hear that.
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
Pacing myself, under-scheduling, asking for help, meds.
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
Meditation practice. Blogging.
What do you do? Work, study?
I’m on long-term disability from my job as an Education Assistant.
What are you plans for the future?
Transition to non-violent work that uses my knowledge and skills but doesn’t trigger me physically.
Is there anything you would do differently since being diagnosed, and why?
I make decisions and plans very carefully and try to anticipate how I might feel.
Has your illness taught you anything about life?
I’ve learned to be content with a smaller world, and make goals so there is always something to work towards or look forward to doing.
What advice/information do you wish you were told when you were first diagnosed?
I wish my doctor had told me that there is help available, and that it is worthwhile to try many things until you find what works for you. It’s good to open-minded about treatments. I really had to fight to get the medical support I needed.
What would be your main piece of advice for people who has just been diagnosed with your condition?
Research, read up on your condition and treatments, connect with other patients, ask for help, and listen very carefully to your body. Don’t wait until it is screaming at you! Find a way to express yourself creatively.
Thank you so much Louise for getting involved! Head over to Read My Mind to read more!
- The next and final Confessions will be going live next Sunday!
If you would still like to be involved or are still working on your answers, there is absolutely no rush! Just email me over at email@example.com to let me know!