As I've talked about on this blog before, on Saturdays, I suffer from Fibromyalgia. I am on Social Security Disability because of Fibro and Bipolar Disorder. It sucks, but I get on with my daily life, and mostly it is just part of the background of living. I don't really think about it that much. The pain and fatigue are so regular, that a certain level of each is "normal" and for the most part, I don't talk about it; I don't complain about it; I don't let it change who I am. Then there are days like today, when it hits me hard. The pain is so great that I can't get out of bed and just my clothing touching my body sends fiery shooting pains through my limbs. I don't even feel human on these days. Even after all this time, being diagnosed 16 years ago, and suffering for many years before that undiagnosed, I don't know how to handle these times.
Unlike many Fibro sufferers, I do not take pain medication. I take a muscle relaxer, some prescription NSAIDs (non-steroidal anti-inflammitories), and Cymbalta. These things help me a tiny bit, but for the most part, they leave me in a great deal of pain daily, and don't help at all when I have flare-ups. My rheumatologist wants me to stay off medication because I take many prescriptions for Bipolar Disorder and other health problems and he feels that the less medication one takes, the better. I don't agree with his non-pain med stance and up until very recently I have been forced to stick with him as my doctor because of my insurance situation. He's an incredibly good, caring and thorough doctor, Fibromyalgia just isn't his specialty and I'm not sure he's the right man for the job. He also has an incredibly busy practice and I usually have to wait weeks to get an appointment, even in an emergency. I'm a bit of a procrastinator, even when it comes to my health and pain, and have been putting off looking for a specialist. I have to admit that this is also partially because I care and respect my doctor as a person and don't want to hurt his feelings. I know this is not in my best interest and is a thoroughly stupid reason to put off taking care of my personal well-being.
Yesterday, I volunteered at my town election. I spent much of the day sitting in an uncomfortable metal folding chair or standing on an unforgiving tile floor. After eight and a half hours of this, I was painfully reminded of why I am on disability. Actually, I was reminded after about a half an hour, but my body was silently screaming at the end of the day. Today I can barely move. I literally just sat or stood yesterday, and answered peoples questions. That's it. No physical labor. No running back and forth. When I do something that wouldn't affect an average person in the least and am debilitated by it, it makes me feel jealous and angry. I am 30 years old, I worked with people 30+ years older than me who handled the day with no problem. I don't wish my pain on anyone, but I sometimes can't wrap my head around the fact that I am hobbling around like a 90 year old woman, and people twice my age are able to be far more active than I am. They lead active, productive lives, hold down full time jobs, run after grandchildren, they go bike riding and hiking. I can't do any of these things. I feel guilty for sometimes being resentful of these people. They have and continue to live the life I want. They live the life I can't. Older people sometimes tell me about the things that happen to our bodies as we age, the aches and pains, etc... and I wonder, what's going to happen to me? I have aches, pains, and incredible fatigue NOW, what's it going to be like when I'm older?
Experts say that Fibromyalgia is not a progressive disease, meaning that it doesn't get worse once you have it. I have not found this to be the case. I have had symptoms of Fibromyalgia since early childhood, began having serious life-complicating problems in my early teens, and became disabled in my mid-twenties. When I was diagnosed at 15, I had sleep problems, pain and fatigue. I am now 30 and have a list of symptoms that reads like a grocery list with about 30 symptoms. No one can tell me that this disease is not progressive. I have lived it and my medical history can attest to the fact that I have gotten steadily worse over the years. I know this to be the case with all the people I personally know who have Fibro. This makes me wonder, when I'm in my 60s, will I still be able to get around on my own? What other complications will have popped up in the next 30 years?
Another thing that scares me is that I don't feel that the medical community truly gives Fibromyalgia much attention. It's not going to kill anyone, so why bother looking to cure it? It doesn't make people look sick, so why bother looking to cure it? It earns the pharmaceutical companies billions of dollars by treating the symptoms separately, so why look for a medication that can simply stop it? Because the syndrome is treated by managing symptoms, it feels to me like there is no great hurry to look into curing it. There doesn't seem to be any great hurry to look for a cause either. I know that there are more pressing problems out there, diseases that are killing people and I do believe that these should get the most funding and the most research. I also believe that this Fibromyalgia is killing millions of us on the inside, and we deserve some help, too.
I know that this post is unlike what you have seen from me up until this point, but sometimes I just want to get it out into the world that I'm frustrated, in pain, scared and I want some help. I've had Fibromyalgia for forever, but you never get used to it. You accept it, but you never get used to it. Every flare is a shock and a disappointment. Sometimes you wonder, why me? What did I do to deserve this? Was I a horrible person in some past life or something?
I never, never wish this on anyone, but I do get jealous of their normal lives. I feel anger when I have to miss a family event because the Fibro is at it again. I blame my illness for more than it's share of my problems. I don't ever remember not waking up tired. I wish people believed in my illness more. I miss the days when I could go for a hike or do some yard work and not pay for it for weeks on end. I don't want people to feel sorry for me, but I do want some respect. I hate it when people assume I must be scamming our government because I don't look sick and I'm young. I miss the normal life I'll never have. If one more person tells me I probably have undetected Lyme Disease, I'm going to lose it. I don't remember what it feels like to be pain free. I hate running into people from my past who ask me what I'm up to, because I have to admit I'm not "up" to anything. I don't want Fibromyalgia to define me. I almost wish that I hadn't been such a promising student, so people wouldn't have had such high expectations for me because Fibromyalgia prevented me from fulfilling them. I wish I had known what this illness would do to me, I would have accomplished more sooner. I'm glad that I didn't know what this illness would do to me, I'm not sure I would have made it through my lowest spots. I still want to change the world, however hard this illness makes it for me.