I saw a news story that Ted Cruz (Senator from Texas) met a woman living with Multiple Sclerosis. In his attempt relate to her, he congratulated her on her struggle living with MS. Congratulated. Her. For. Living. With. MS. Now don’t get me wrong, I am pretty sure he meant he admired her strength for dealing with the disease. At least, I hope that is what he meant. Could you imagine someone congratulating you on living with a chronic disease? I could see it now….getting those Congratulations banners and balloons from a party store to hang in the living room of a person diagnosed with MS, RA, Lupus, Diabetes, etc. After 25 years you’d get a gold watch or gold cane! Could you imagine?
on your chronic illness!!!
I’m not slamming Senator Cruz, but I think he is the perfect example of the fact that people don’t know how to speak to someone living with chronic illness. I mean, I’ve had people tell me they admire me, pity me, don’t believe me (because I don’t look sick), and my favorite, “I think I have that, too.” Honestly, I the thing most people living with chronic illness want to hear is “How are you?” and then the person asking actually listens to our answer (without judgment).
Today my hand decided to try to make life difficult with serious pain and swelling. By the end of the work day, I couldn’t close my hand around a pen to sign my name. I literally could not do it. It was locked and not moving. I panicked and asked the guy next to me to sign my name. I was morti I then sat through a meeting with ice on my hand to try to get the swelling down before driving home. It’s a struggle that I really don’t want to be admired for or God forbid pitied for. I don’t ask for help for so people can feel sorry for me. I ask so I can get things done quickly and move on. It’s a struggle that I just want people to accept as being a part of who I am. It doesn’t define me, but it is something I can’t ignore. I can’t make it go away, no matter how much I hate it. I can only accept it as one part of me and keep trying to move forward. No congratulations needed.
My fibromyalgia has been kicking my butt lately. Lots of achiness, pain and overwhelming fatigue.
Photo Credit: Holly Hoffmeister Toulouse via The Mighty
The other evening, I was lying on the sofa feeling lousy when I got a text. It was my neighbor asking me to come outside to see her new car. I went to stand up and was hit by a wave of “OUCH”. I told her I was in too much pain and would check it out the following day. About an hour later, I struggled walking up the stairs to use the bathroom. I had to crawl up the last few steps. It was time for my medication, so I took it and hoped for relief. Unfortunately, I didn’t take it with food and got really nauseous. I literally poured myself into bed. The nausea woke me up around midnight. I stumbled into the bathroom and noticed my face was seriously flushed. I grabbed the thermometer and to my utter shock, I had a 102° fever! I was sick! I had no idea! The body aches, fever and chills lasted for days. I’m still not sure if it was a stomach virus or the actual flu. I had symptoms of both. It delayed biologic injection by a week (2nd time that has happened due to being sick this winter). I was out of work for days and don’t think I have slept that much in years. It really knocked me off my feet…..but for the first 5 or 6 hours, I just assumed one of my diseases was flaring. I was dumbstruck that I didn’t realize I was pretty ill. It made me wonder if people who don’t live with chronic illness ever “not realize” they have the flu? Or has brain fog taken away my perspective when it comes to my body?
One of the main symptoms of fibromyalgia is musculoskeletal pain and fatigue. The flu causes similar discomfort. Having both at the same time is akin to having a tractor trailer run you over, then it backs up to finish the job. It was hideous, but I’m lucky mine passed relatively quickly. Now I am back to just feeling regular fibromyalgia pain, along with the joint pain from autoimmune arthritis…. lucky, lucky me.
Photo Credit: Dear Fibromyalgia
I was excited when CreakyJoints asked me to write about my relationship with my dog. I thought it would be easy to reflect on our life together, but it wasn’t. My dog and I have a complicated relationship that was harder to explain than I expected Not only is she my constant companion and fur baby, Georgia is also a fellow spoonie.
Here is our story:
I’ve been living with multiple chronic illnesses for over 20 years. My journey into the world of chronic illness life started with Grave’s disease and DSAP (a skin disease) then moved into more painful illnesses of Fibromyalgia and Polyarticular Spondlyoarthropathy. Through the years I’ve had some relief from various medications, but overall, my pain has been my constant companion since my early 30’s. I loved animals and always had dogs as a child, but I hesitated to get one as an adult because of my pain and physical limitations. Dogs need to be exercised, bathed, and groomed and honestly, I have a hard enough time doing that stuff for myself. Instead I had two cats and I adored them, but in the back of my mind, I have always been a dog person. So I decided to do some research. I spent almost a year researching dozens of breeds to find the best fit for me. I finally decided on a Cavalier King Charles Spaniel because that type of dog seemed to fit my lifestyle and my ability level. I noted there were hereditary illnesses with the breed, but having 8 dogs prior and watching my mom manage their illnesses, I figured that I could handle whatever was ahead. I even took out pet insurance to err on the side of caution. I thought I did everything right…
To see the full article, please go to the click this link for the CreakyJoints website.