Living with chronic illness is like a rollercoaster ride. Not the small carnival coaster, but the big giant rollercoasters that create screams, tears, and vomit. You never know what's up ahead around the next curve. Will it take you up or down? Will it slow or speed up? Will it tilt side to side or make you feel like your about to fly out and die? How long will it last? Will it ever stop?
You approach the coaster with trepidation, not knowing what to expect. You get off the coaster with the relief of being back on solid ground. You may get sick to your stomach at the experience you just had. Does that sound like fun? Maybe it is in an amusement park. It is not fun, when you live it every day.
What most people don't realize that there are many of us walking around, looking normal, doing normal things who live this way. We are not disfigured. We are not walking with a cane or walker, not riding in a wheelchair. However, disabled we are. But because we look like everyone else, it is assumed that we are not in pain, that we are not fatigued, that we are not battling depression, that we are not struggling with brain fog, that we are capable of everything a healthy person can do. We are judged when we don't do the things that others can do. We are judged to be lazy, unmotivated, disorganized, even stupid or crazy.
Those of us that suffer from chronic fatigue, rheumatoid arthritis, fibromyalgia, and other autoimmune and systemic diseases have the same want to as anyone else. They just can't always do. They have dreams of doing new things and going to new places. They just can't always fulfill those dreams. They have needs of maintaining a healthy weight by exercising and eating right. The just don't have the energy to exercise, dread having additional pain on top of their existing pain, and they eat comfort foods to sooth themselves in their depression over their illness. They are then judged again for not being strong enough to overcome these things.
Those of us with these hidden illnesses grieve. We grieve the person we used to be. We grieve the effects it has on our lives. We grieve the loss of respect from other people. We grieve the impact it has on those around us. We grieve the dreams for the future that are lost. We grieve the life we hoped to have being able to travel, to be able to learn knew things, to be able to handle grand babies without fear. We grieve being left out of things because people don't know if they can rely on us. We grieve the lack of understanding and compassion from others.
We don't want pity. We don't want you to feel sorry for us. We want to be understood. We want to be trusted when we explain ourselves to you. We want to be loved and encouraged. We want acceptance of this version of ourselves. We want to do the best we can with what we have even though sometimes we can't. We want to get off of the rollercoaster of pain and fatigue. We want to be our "normal selves". We can not be the old normal and have to accept our new normal as best we can. It would be nice just to maintain a level track without the constant surprises around the bend. It would be nice just to be back on level ground.
Monday, August 14, 2017
Friday, August 4, 2017
PILING ON
I have to admit that I have not been up to blogging. I have to admit that I am not feeling my most positive self. I have to admit that I have been letting things get me down.
What are those things? My health issues. Besides the fibromyalgia I was diagnosed with in 1994 and the proceeding rheumatoid arthritis diagnosis soon to follow along with chronic fatigue. I have endured a number of maladies along the way. I have had to have multiple surgeries, one of which was to remove the left lobe of my thyroid. Hence, my recent diagnosis of hypothyroidism! I now have to take a medication (synthroid) to compensate. I know lots of people that take it and most have had issues about regulating the dosage. Something else to deal with.
For those of you that don't know, fibromyalgia is a condition that causes widespread pain throughout the muscles of the body. Just recently they have concluded that it has to do with a cell that is in the blood vessels that deals with pain perception. Fibromyalgia patients have more of the blood vessels therefore more of these cells, therefore more pain. It is not in our heads!
Rheumatoid arthritis is an autoimmune disease in which the body attacks the joints. It is painful and can be debilitating. Luckily there are medications that slow down the progression of the disease. The chronic pain of this and the fibromyalgia also cause extreme fatigue. I have had to have shoulder and foot surgery due to the arthritis. I also had a hysterectomy to alleviate that pain and other symptoms so I didn't have that piling on of misery.
I have gone to chiropractors, physical therapy, massage therapists, holistic therapists, specialists, etc. One specialist was the head of rheumatology in New Orleans at Oschner's. He asked about my job and told me that if I went back to it that the stress would kill me. He said that my body could not handle stress. At the time, I was so fatigued that I could barely make it through the week and had to rest each night and all weekend. I had no life and could hardly hold myself upright. I resigned the following week.
Not long ago, I began having chronic lower back and hip pain. An MRI revealed that I have a bulging disc at L4/L5 and arthritis in my vertebrae. I had 3 lumbar injections which did not help. I have been doing physical therapy for months now. I get some relief but then the least little thing flairs it up again. I just started a new round of PT just to try to keep the pain somewhat under control.
Here of late, I have been feeling very fatigued and now understand that it is the hypothyroidism on top of my regular fatigue causing this. I sure hope the medicine helps otherwise I may have to cut back on the things I do again. NO!!!
It seems that just when I am trying to do better as far as exercise and diet, something else hits me. I have been going to a place that works with you on fitness adapted to your medical conditions and nutrition with the goal of reducing inflammation in the body and to lose weight. I have lost 20 lbs since April. I have improved in several areas that they measure as in balance, flexibility, and so forth. I will continue to go there to strengthen myself and to lose weight in hopes that that will help me to move better and have less back and leg pain.
As usual I try to push through and continue to do the things I need to do. Sometimes I just need to shut it down. I would love to right now but I have made commitments to others and want to follow through. I try not to get discouraged, but right now that's where I am. As I've said before, I will have my pity party and then pull myself up by the bootstraps and keep on keeping on.
Although I don't understand the reason for all of this, I trust that The Lord with bring me through it. I just pray that I can do so with grace. Right now I don't feel so graceful and feel like I am at the bottom of a dog pile!
I will go on. I will persevere. I will lift my head, eventually.
What are those things? My health issues. Besides the fibromyalgia I was diagnosed with in 1994 and the proceeding rheumatoid arthritis diagnosis soon to follow along with chronic fatigue. I have endured a number of maladies along the way. I have had to have multiple surgeries, one of which was to remove the left lobe of my thyroid. Hence, my recent diagnosis of hypothyroidism! I now have to take a medication (synthroid) to compensate. I know lots of people that take it and most have had issues about regulating the dosage. Something else to deal with.
For those of you that don't know, fibromyalgia is a condition that causes widespread pain throughout the muscles of the body. Just recently they have concluded that it has to do with a cell that is in the blood vessels that deals with pain perception. Fibromyalgia patients have more of the blood vessels therefore more of these cells, therefore more pain. It is not in our heads!
Rheumatoid arthritis is an autoimmune disease in which the body attacks the joints. It is painful and can be debilitating. Luckily there are medications that slow down the progression of the disease. The chronic pain of this and the fibromyalgia also cause extreme fatigue. I have had to have shoulder and foot surgery due to the arthritis. I also had a hysterectomy to alleviate that pain and other symptoms so I didn't have that piling on of misery.
I have gone to chiropractors, physical therapy, massage therapists, holistic therapists, specialists, etc. One specialist was the head of rheumatology in New Orleans at Oschner's. He asked about my job and told me that if I went back to it that the stress would kill me. He said that my body could not handle stress. At the time, I was so fatigued that I could barely make it through the week and had to rest each night and all weekend. I had no life and could hardly hold myself upright. I resigned the following week.
Not long ago, I began having chronic lower back and hip pain. An MRI revealed that I have a bulging disc at L4/L5 and arthritis in my vertebrae. I had 3 lumbar injections which did not help. I have been doing physical therapy for months now. I get some relief but then the least little thing flairs it up again. I just started a new round of PT just to try to keep the pain somewhat under control.
Here of late, I have been feeling very fatigued and now understand that it is the hypothyroidism on top of my regular fatigue causing this. I sure hope the medicine helps otherwise I may have to cut back on the things I do again. NO!!!
It seems that just when I am trying to do better as far as exercise and diet, something else hits me. I have been going to a place that works with you on fitness adapted to your medical conditions and nutrition with the goal of reducing inflammation in the body and to lose weight. I have lost 20 lbs since April. I have improved in several areas that they measure as in balance, flexibility, and so forth. I will continue to go there to strengthen myself and to lose weight in hopes that that will help me to move better and have less back and leg pain.
As usual I try to push through and continue to do the things I need to do. Sometimes I just need to shut it down. I would love to right now but I have made commitments to others and want to follow through. I try not to get discouraged, but right now that's where I am. As I've said before, I will have my pity party and then pull myself up by the bootstraps and keep on keeping on.
Although I don't understand the reason for all of this, I trust that The Lord with bring me through it. I just pray that I can do so with grace. Right now I don't feel so graceful and feel like I am at the bottom of a dog pile!
I will go on. I will persevere. I will lift my head, eventually.