Being on disability is no walk in the park. It’s a struggle both emotionally and financially. When you are already dealing with a battle inside that no one else can see or feel it’s just added stress when your spoons are all used up
Brain fog and pain make it difficult to concentrate, add in side effects of medications that can cause cognitive dysfunction, sometimes I just really live up to being a blonde. The Cognitive Dysfunction caused by my Rheumatoid Arthritis makes my thoughts and actions feel as if I am moving or thinking through drying cement or there is an invisible wall up stopping my mind from moving forward. I am often confused and my memory is hazy, especially if I am over tired. Rheumatoid Arthritis makes it difficult to think, learn, remember and perform various mental tasks on a daily basis for me.
Not True I am stupid. I am a dumb blonde. I am high… Ok I might be a little but I strongly consider Marijuana a natural pain reliever with far better side effects!
Sitting hurts after a short period. Standing hurts after a short period. Laying down hurts after a short period. Arthritis is painful and there are 360 joints in the entire body to be hurting. Pain leads to a number of issues including painsomnia and swelling from inflammation. It makes movement difficult. Ouch. I am constantly squirming in pain and over using my joints is pretty easy when they are in a flare.
Not true The pain is located to only my joints or all in my head. And I can’t just push through it without consequences.
When you are a spoonie your energy is limited. We describe ourselves as spoonies to help those understand our energy levels; a spoon is a indicator for our energy, say we start off with 10 spoons a day, a healthy person has unlimited spoons. Take a spoon away for everything you do like shower, prepare food and eat, grocery shopping, etc.. Some activities take more than one spoon and everyday is kind of different. Once we are out of spoons we have no choice but to become one hell of a tired hot mess and that can happen any time during the day. When I do have a bit more energy then I try and catch up on everything else. I find between the pain and fatigue I move at what I call Arthritis Speed.
Not True I am Lazy
4. Trigger For Flares
What I went to school for is too much for my body now. I have to make sure I do not over use my joints otherwise they become sore and can further damage them. I can’t lift anything heavy, I can’t stand or sit for very long. The majority of my pain and issues are in my neck, hands, left hip and right knee. I experience pain in these joints pretty much 24/7 and overusing them is easy. Something as simple as scrubbing the shower can irritate them.
5. Stress is a major trigger
Stress is a major trigger for anyone’s health to go funky. Add in already compromised health and it can get worse. It’s pretty easy to become overwhelmed when chronically ill and being on disability.
Not True It’s all in my head
6. Emotional Challenge…I am still adjusting to being chronically ill.
At first disability was like a vacation I really needed. My body was broken down from years of being an esthetician, especially my hands and back. I wanted to care for my son more and I still consider being able to have the time to dedicate to my son as a blessing. I knew I had to say goodbye to my beloved job and find something new but as just simple everyday tasks become more and more difficult the possibilities of what I could do for work start to lessen drastically. This leads to feelings of being a burden, guilt and isolation.
Not True I am being dramatic…And it’s a very real nightmare
7. Side Effects
Glorious, oh glorious side effects. They can range from a number of different experiences like night sweats, diarrhea, nausea, depression and mood swings to suicidal thoughts. We’ve all seen the infomercials of pharmaceutical drugs, the lists are always so long, weird and scary. When chronically ill you usually have to go through a wide arrangement of medications until you find the right one that will work for you. I’ve tried over a dozen and am still searching for the right ones, this takes years for some people, I am at 2.5 years, still a baby to being chronically ill compared to many. I’ve known people who’ve waited for close to over 6 years before finding something that works. Sometimes the side effects are as bad as the disease but I want to fight like hell and beat these diseases.
Not True How damn happy the people on those pharmaceutical drug commercials are
8. My health care routine is already a full time job
Between all the doctor appointments, physio, yoga, exercise, healthy meal preparation and everything I already have to do as a single mother, my spoons are already over used. I have to put my health and my son as #1. And I need time to rest and relax! Like a lot of time! It’s pretty boring.
Definitely not lazy or making excuses.
9. How would an employer understand? Who would even hire me?
Seriously, I would love to find a job where they don’t care if for days or weeks at a time I need to rest or I’ve got a pile up of doctor appointments that week. Who doesn’t mind my constant mistakes caused by that pesky cognitive dysfunction or my slow and flaky arthritic speed. How would they understand how much I already have on my plate?
Not True I don’t want to work
Trust me, I do. It’s pretty boring watching day time television and being isolated. Not working results in me feeling like a burden, guilty and useless. It’s not a wonderful feeling. Also pretty damn broke. I would love to find something I could excel at while chronically ill. I am always hopeful.
10. Every Case Is Different
There are over 100 types of Arthritis all ranging in different cases and degrees. It was already bad enough my Rheumatologist referred to me as a difficult and severe case and just because you can’t see that severity doesn’t mean it’s not there.
Not True: Everyone Has Arthritis
11. Because I have a severe debilitating disease, I am not making excuses
And even if you can’t see it doesn’t mean it’s not real and I am not too young for it. There’s 6 million Canadians in Canada alone with a form and that’s only because they’ve been diagnosed. Approximately 350 million people worldwide have arthritis according to The Arthritis Foundation.
True: Just because you know someone else with Arthritis who can work doesn’t mean every case is the same
12. I devote what little energy I have to my child and raising awareness when not taking care of myself.
My care for my son I am convinced is driven by my love for him. It must be the endorphin of my love for him that make me strive through Arthritis to be the best Mom I can be. My passion for awareness drives me further.
Not True: I want a man to pay for me
13. My Doctor Suggested It
The first time I met my Rheumatologist she told me she would sign any form I needed. I knew she was hinting to me to take disability. I asked her if I should be on disability and when she, as another mother and someone treating the disease I have told me I had enough on my plate. She was absolutely damn right. Being chronically ill is a battle, it’s a struggle to get by on disability but sometime you have to put your health first. Don’t ever let anyone make you feel guilty for knowing you are too sick to work but look capable of it. Not everyone gets it and sometimes it’s a surprise to us who won’t.
Not True: I want to ride the system
The system is there for a reason, to help people like me.
14. Not Everyday Is The Same
Everyday of my illnesses is different and in probably some way difficult. The whirlwind of chronic illness is already hell to go through.
Not True: I am a flake
15. I Need Time
I need time for my body to heal, adjust, decline. I am on a new journey and a new path in life, a little too early.