Last night was rough pain wise and it's continued through the entire day and night tonight. I can't hardly move. When the pain is this bad, it starts to really get me down and make me feel depressed. Even my head, upper legs, and the back of my arms hurt tonight, in addition to my every day pain of neck, shoulders, knees, lower back, and mid-back. I'm so sick of hurting all the time. I just wish that I could look and feel good for one single day ...and when that day arrived have the money to take advantage of it by going shopping, out to eat, then out to a movie or live performance or something. I want to walk around, and laugh and have fun. I want to go out and walk through parks, taking nature photos as I go. I used to do this. It would hurt me, but it was doable. Now? No way. I used to take my camera pretty much anywhere I went. Now, not only can't I stop along the side of a road to walk out in the middle of a field to take a photo I may want to take, but I can't even hold the camera up long enough to walk anywhere with it. Well, I can hold it up, it just causes me extreme pain in my arms, neck and shoulders. So therefore, I can't still do it. Not enjoyably anyway.
I can't convey the excitement I'd feel when I would take photos. The excitement of getting home and downloading them all, to see what natural beauty I had captured at that particular second in the universe. That nano-second in time that could never, ever be reproduced. The photo above is one of those nano-seconds that I captured. The top of the cloud looks as if it's lined with silver. Rays of golden light opening up out of the cloud and reaching towards the sky. As if it's a tunnel of light to heaven. All of the rays of gold to the right side of the photo. Like rays of golden hope. Hope, that if I keep talking; that if I keep writing; if I keep advocating for more research, that maybe, just maybe a cure or at least a concrete universal treatment plan may be found. If not found in time for me to utilize it, then at least in time for my daughter or others younger then me, to take advantage of it.
It really hurts my heart, that so many people (most people) just doesn't have a clue how bad this pain can be. I call these people DHAC's, which stands for "doesn't have a clue". Most DHAC's are well-meaning people and aren't trying to hurt us, or make us mad, they just honestly really DHAC. I have a DHAC in my life. She is the sweetest woman in her early 50's and she really cares about me. She's pretty much the only adult IRL (in real life) friend that I have anymore, and I'm pretty sure I won't even have her for much longer. At least once every week or two she'll call me up telling me that I need to get myself out of my house. She'll tell me how I should be going to the gym to do cardio and weight lifting with her. The best thing that she regurgitates at me at least once a week? "Well, you know my BFF K. that I've had for 30 years. She has fibro and she gets around so much better then you do. You just need to snap out of it.". OR....she tells me over and over how there's a 60 year old woman who works out at her gym who has Fibromyalgia so if she can do it, then I certainly should be able to do it too.
See, that's the funny thing about Fibromyalgia or Chronic Fatigue Syndrome, arthritis, even auto-immune diseases such as Lupus, RA, etc. You can line 20 people (or 50, or a 100) up beside each other and you may not hit two people who have the exact same symptoms. You may not hit two people who are affected the same way. They'll all have varying degrees of pain. Some people only have a few of the symptoms of fibro and others may be affected worse by their symptoms and pain levels. Just as when what people call "the flu" (that is actually an intestinal virus) some people have a bad case of it and some people have a less severe case of it. Unfortunately, I have a "bad case" of Fibromyalgia. I have all the symptoms and co-conditions. I have the acid reflux, I have the IBS, the Fibro Fog & memory loss, the insomnia, and on and on and on. Does this well-meaning friend honestly think that I like not going out and doing things? No, I don't. I despise it. You can't even begin to understand how bored and lonely and stir crazy I go. Days like the last few though, I don't really have much of a choice. I always have to use the chair arms to "push" myself out of my chair and yell "ow". The last few days it's a double "ow" because the back of my arms hurt so badly too.
My pain has been so bad for the last two days that I'm really not dealing with it well by tonight. Not at all. I'm starting to feel whiny, and I keep blinking back tears. Just typing these words made me start feeling emotional again and I had to shove the tears away. I seriously feel as if I'm losing my mind and going mad from the pain. It isn't like I have a little pain. I have pain. -I had four children natural without pain meds. I know what pain is, and I have real, debilitating, pain. When I was first trying to come to grips with my illnesses, I kept asking "why me?". "Why me God? What have I done to deserve a life filled with pain every single day?". I always felt that God wanted me to use my sicknesses to help others who are also sick. I thought he wanted me to educate and advocate to fight for the rights of those of us afflicted. I felt that he wanted me to bring awareness to the table, to advocate for more research for a cure. Now? I'm not so sure. I feel that if I had been right, that God would've opened the doors for my chronic pain seminars. Maybe it just isn't the right time yet? I don't know. All I do know is that's where my passion lays. I also know that presenting chronic pain seminars is the only type of work I could possibly do at this point in my life. Due to the fact that it isn't something I'd be doing every day, along with the fact that they only take a couple of hours, hours that I could alternate standing and sitting as needed while doing it, it's the only way I can fathom to do to support my daughter and myself. I've always heard the saying "God helps those who help themselves". I've tried every thing I can think of to try and help myself on opening the doors to public speaking and advocacy and it still hasn't panned out. My birthday is November 18th, and I've posted everywhere that the only thing I want for my birthday this year, is to have enough money to present at least one chronic pain seminar. God bless those who've donated to my chronic pain seminar fund on GoFundMe, but I've only raised $75 in the four months that I've been advocating and asking for donations. -And you guys can't imagine how hard it was for me to make the page and ask in the first place. I really don't think there's any way for me to hit my birthday goal of having the $75 raised up enough to hold at least one seminar. I've said before that I'm not looking for a free handout. I'm looking for people and/or businesses that believe in me and in what I'm trying to do. I'm looking for the help of getting started. After the first couple, then the seminars will start paying for themselves.
The grief wheel is a funny thing. I'm not sure that you ever get out of it. I'm beginning to think that it's something you just keep going around and around and around on until you die. Every time I think I've finally come full circle with it, I find myself in the questioning and angry stage again. Then we start all over. I'm dizzy and sick of spinning around on this silly wheel. Enough is enough. Unfortunately though, since doctors and scientists doesn't have a cure, or even any single medicine that will take away my pain and my fatigue, I'm just stuck here going around and around and around. No matter how hard I have to fight to believe and have hope, I will. Hope that a cure will be found. Hope that research will provide answers so that medicine that works will come to light. Hope that a door will be opened for me, and my career in advocacy will take off. I can't lose faith of my hope, because if I do then what will I have left?
