Imagine living in constant pain caused by something known as the “suicide disease.” A pain so bad you must quit your job, can barely leave your home and have to rely on others just to help you get through the day.
What is worse, though, is that medications do not really help, instead only slightly lessening where you may fall on the pain scale from one to 10 that day.
Waking up each day – if you are lucky enough to be able to fall asleep each night – with ever-worsening and perpetual pain is not something we wish on our worst enemy. Yet, this is how Elmira resident Shannon Kelly has had to live her life over the last five years since being diagnosed with Complex Regional Pain Syndrome (CRPS).
CRPS is a multi-system, multi-symptom disease which usually comes in the form of chronic pain and often affects one or more limbs – although any part of the body can be affected. While the cause of this disorder is unknown, Kelly can trace the cause of her disorder to a surgery she received for an old injury.
Many years ago, she dropped a fire extinguisher on her foot and the subsequent pain forced her to have surgery to correct hammertoe. After the surgery she developed more pain and the appendage started to die, causing her to require amputation.
“They amputated it leaving part of the joint in,and with that part of the joint, I was still having problems and pain, and stuff so they ended up doing a third surgery just removing that little piece of joint. I was [still] having pain I got sent to a doctor and that’s where I was notified that I had Complex Regional Pain Syndrome, and that there was no cure to what I had,” said Kelly.
Since then, the pain she has had to endure has been constant, starting by only affecting her foot and then spreading to the rest of her leg. The 38-year-old mother of two can now barely walk without agonizing pain affecting her every moment.
“It’s come to the point that I can barely put weight on myself anymore… I had a knee scooter when I first got diagnosed, and then I was using a cane. Then it was my walker, and now [I need] an electric wheelchair because I cannot walk [even short distances] without extreme pain,” she added. “When you get flare-ups like this, it feels like somebody has lit my foot on fire. Frostbite, tossed in gasoline and set on fire [is what it feels like] with flare-ups. It’s a huge change in my life and it has taken everything away from me.”
To make her home more accessible, Kelly has had a chairlift installed after it was donated by a family friend.
Being a personal support worker (PSW) before she got sick, Kelly hates how the situation has been reversed, as she now requires the help of a PSW most of the week just to get through the day when her husband and kids are not home.
“I used to be a PSW; I took care of people with disabilities for a living, [but] I left my job. Now, the tables have turned, and I have a PSW come and take care of me. I went from helping people with disabilities to having one take care of myself and me seeing myself through my old client’s eyes.”
With everything she is going through, Kelly is not afraid to admit that the suicide disease she lives with has caused her to think about ending her own life.
To help her get through the day, Geoff has started a GoFundMe to raise $4,000 to get her an electric wheelchair.
Since her pain has got worse, Kelly has been unable to walk her dogs, missing out on something that has given her comfort.
“Now that the weather’s getting nicer, she wants to be outdoors. With this [walker] she can’t go very far. So, if there’s something where she can sit and ride along, she could be able to enjoy the outdoors and she wants to walk the dogs,” said Geoff.
The fundraiser has been going for about a week now and has garnered almost 50 per cent of the goal.
Moving forward, Kelly is looking to get into a pain clinic in the hopes of finding a better treatment to help ease her pain. The family is also going to be looking into making their porch more accessible, which includes adding a proper ramp and removing the step from the house so that Kelly can use the wheelchair once she receives it.
To donate to the Kelly fundraiser, visit ca.gofundme.com/f/help-my-wife-shannon-get-a-electronic-scooter.