When most of us think of friendly fire, we think of two soldiers on the battlefield both fighting for the same side and then in an instant one accidentally kills the other. This is a horrific event and certainly causes a tremendous amount of collateral damage not only to the mortally wounded and his or her family, but to the one who causes the fatal shot. However, what is friendly fire in chronic illness? I really do not even know if this term has ever been used or invented so I am branching out on uncharted territory here and branding it if it has not yet been used in this case. Friendly fire in the sense of the chronic illness world: those of us with Fibromyalgia, CFS/ME, M.S., Lupus, RSD, Lyme, Spinal injuries/damage and any other condition that can fit into the category is simply this: not respecting each other in the way we each choose to handle our illness. None of us present exactly the same symptoms and problems. None of us respond exactly the same to treatments…. whether it be medication, nutrition, exercise, physical therapy, counseling or the many other ways we chart our course to treat our conditions.
In the last month alone I have been attacked by a reader because I am able to go to the YMCA and participate in arthritis warm water classes. I am the youngest member of my class, at least by 20 years. This embarrassed me for a long time but then when all the lovely, funny, wonderful people in the class started to embrace and talk with me, I felt so at ease. I simply cannot afford physical therapy and it had been suggested to me by several of my health care providers that warm water therapy is excellent for Fibro. So I tried it. And guess what? It feels wonderful! It is not exerting at all, and as most Fibromites know, we can all attest how wonderful a warm shower or bath feels. This is basically the same only add a bit of movement and socialization. I make no apologies for this and it is quite hard to get out of the house at times, but it has helped some. Not a lot, but some. And I actually think just getting out of the house and socializing with these lovely people is 1/2 of the effect.
This same woman attacked me for being able to go to the store a couple times a week. What she does not know is when I go to the store, I only go to pick up a few light things. I am all but housebound. If I did not get out at some point during the week, I would lose my mind. I have no problem with someone questioning something I write if it is a true, intelligent question. But this person rambled in poor grammar to boot. To not embarrass her …. because trust me, it would… I did not approve her rambling attacks. Some bloggers would approve her attacks just to embarrass her. I did notice, however, on her Facebook page she has pictures of herself out at the lake, on the beach and at several social settings. She also noted she was staying in a hotel. Take it from me as someone who has, in the past, traveled a lot, checking into a hotel takes a lot of energy. So I find it hypocritical to attack me for doing my best when it is clear she is not as much of an invalid as she claims. As they say, a picture is worth 1,000 words.
I am trying to help people here. I realize not everyone is going to like and/or agree with what I say. Nonetheless, rather than issue a verbal assault, why not just move along in peace. I do not make any money from this blog. It is a labor of love to help others in this journey and to hopefully raise awareness to people who want to learn more about Fibromyalgia and Spine issues. We have got to stick together. I see so much squabbling and arguing amongst the chronic illness community, it saddens me.
In the last few days I had posted a video from a “Doctor” in Las Vegas who makes big bucks on making fun of various illnesses. From Ebola to Influenza, if it kills, he parodies the disease and is getting quite rich and famous doing it! I am not quite sure what is funny about the suffering and death of hundreds and thousands of people, but I guess where there is a buck to be made…. no matter how unethical… people will cash in. I attempted to post this video to my page and simply put it as such: IF this video offends you, please speak up. I had three Facebook friends dislike the video for the same reasons. Two of my Facebook friends launched a campaign on the evils of drugs and how no one should use them for any reason. One stated even over the counter medications were evil. I quickly gave my side. Simply put, many of us cannot get by on air, nutrition and exercise alone. Many of us follow our pain contracts to the tee. Many of us work hard…. walking the tightrope of using as small a dose of meds we can to achieve a livable life vs. not being labeled an ‘addict’. Personally, I would rather see a Doctor with a syringe full of steroids than one who wants to offer me more medications. In fact if I were offered meds, I would decline them. I am not supposed to take NSAIDS. It is quite dangerous for me. I have started taking them again because of the issues I am having with migraines. Note NSAIDS instead of leaning on the prescription meds. I stated that I had said, “If you are offended, speak up, if not, that is fine, move on in peace.” I thought that would be the end, but it was not. The debate continued. Since it was stressing me out and it was my wall, I just deleted the whole conversation. One person messaged me and accused me of being in ‘defensive mode’. I wrote twice in my post and in the message that I felt the video was a double whammy: making fun of addiction (something as the daughter of an alcoholic, I do not find funny) and making it look like every single person in pain management is a pill popper (False!). Most people listen with the intent of talking. In other words they do not listen. The other ‘friend’? She blocks someone on a nearly daily basis. She complains every day about how bad her pain is, posting pictures of various selfies of ‘faces of pain’ yet refuses meds. I am not sure why she blocked me. I did not insult her and in fact I did not even respond directly to her, I simply pulled the post. If she thinks it ruined my day, it is the farthest thing from the truth.
Each of us in this walk has a unique story to tell. This is not a rubber stamp illness and in fact I have layered issues… Fibromyalgia and a really messed up C-Spine (putting it rather mildly). My C-Spine needs at least one total reconstruction but thinking they can get it in one surgery is optimistic at best. There is only one Doctor in my city that has even agreed to take my surgery. I am also facing the likely event of another diagnosis of a 3rd autoimmune illness in the next few months and though we do not know yet, our bets are on MS. Stay tuned.
Rather than tell each other how to manage our illness, why not worry about our own illness and be supportive of our brothers and sisters and their walk. The DEA just cracked down yet again and the laws and restrictions are very tight. I am proud of myself and I know Paul is very proud of me. I am far worse today than I was five years ago, yet I am less medicated now because of the utilization of the wonderful epidurals and how wonderful they are in the management of my neck pain. Still, I do need some help from medications. But even my pain management Doctor notes that he is surprised, given the extent of my Fibro and neck damage that I can get relief from the low amount of meds I am on. My NP at my Internist office even noted on my last visit that my meds had lightened a good bit! It is a tightrope. And I am not ashamed. I have a lot of stuff going on. I am proud that I am know what to utilize and how to utilize it. I am able, if needed, to go to the ER in a pinch and get a Torodal shot (NSAID) which is non-narcotic. These are the things that will give us, the chronic pain patient, the reputation of not being a pill seeker. Now, if we can just get respect and support from our brothers and sisters in pain. That is the real test! Until next time, K.