“You have fibromyalgia.”
The three words that completely changed my life.
You mean, it’s not terminal? Oh good, because until then I really thought I was dying! Wait…what? But, it’s just an illness. Chronic, that means lifelong. So one day, I got sick and it took me a very long time to come to grips with the fact that I was never going to get better. Never. So, it’s not terminal, but my life as I once knew it, was over.
If not knowing who I was going to be anymore wasn’t enough to kick a person in the stomach and take what feels like all the breathe of life I had in me, fibromyalgia didn’t come alone. No! It’s like a war soldier, it comes along packing troops of many. Next thing I knew there was irritable bowel syndrome, gastroesophageal reflux disease, Hashimoto’s disease, Sjogren’s syndrome, Raynaud’s phenomenon, etc. It’s horrible. It even makes me live with mock symptoms of diseases like Meniere’s disease, causing me to live miserably. But test after test comes back normal and my insurance will not approve payments for treatments. And for me, this condition even has that powerful ammo that includes the so many stomach sensitivities and allergies to meds so my symptoms couldn’t properly be treated.
If only the co-existing conditions were the worst. But, they’re not. It’s a horrible chronic pain condition that affects my muscles, nerves, joints, and even my tendons. Migraines, sciatica, tenderness, numbness, hot and cold sensitivities. The list goes on and on. I haven’t felt normal in years. I can’t be touched. Even the lightest graze hurts and is uncomfortable. Some days my clothing hurts, burns or irritates my skin. Depression…did I mention depression? General depression and recurring depression. I really think that has to be a given with chronic illness. I’d be lying to myself if I said I didn’t have it at least some of the time.
Now, chronic illness was never expected. No one ever expects to get sick and find out they will never get better. No one expects to find out their life is never going to change. The worst part for me was losing control, not being able to take care of myself, my life, my kids or being someone anyone could depend on any longer. I didn’t even recognize myself anymore – who was that person in the mirror?
When you see others, you people are are going to try to hug you, shake your hand, accidentally brush up against you, bump you or step on your foot. Panic! That’s where you get your new invisible friends – anxiety and panic attacks.
While I know I’ve probably left so much out because I’m pretty tired today from the constant chronic fatigue and I am feeling a little bit of the famous “fibro fog,” I have to say out of everything – the one I never ever expected to experience, or at least to have affect me the way in that it has, are those of the anxiety and panic attacks! I do have them both. How many different kinds of anxiety can you really have? It feels like more than one kind of anxiety. When I’m experiencing it, at least some sort of panic episode it feels like people are staring and their eyes are burning right into my soul.
I can’t even talk to doctors without feeling like I’m lying. I have have to take a list with me, otherwise I can’t remember why I am even there – or even my own words. I shake and shiver anywhere from being freezing cold to being in complete fear to how they are going to treat me. Doctors don’t even listen, they treat chronic illness patients like they are insane, lying and there for drugs. It’s so ridiculous. It’s funny, in a way. Sometimes they look at me like, “Well, what do you expect me to do for you?” Then once they look at my allergy list and stomach sensitivity list, realizing I don’t “do” opiates and normal pain meds. ”
“What do you expect me to do for you?” Don’t look at us and tell us fibromyalgia isn’t real after years of struggling and barely being able to move, eat, breathe and live. Don’t tell us to exercise when we have been trying to! I should get paid for doing all this research myself and telling the doctors what I need them to do, and having to beg them for the treatments and hoping on the long drive there they will agree and it will get approved.
“Princess in the pea syndrome.” Remember that story from when we were kids? That’s a real thing. It wasn’t a joke, it’s a symptom. It’s anxiety and hypersensitivity related to fibromyalgia and probably other chronic illnesses. I can’t be comfortable if there’s something wrinkled under me, like my my blanket, pants or bra. I have to fix it until it’s right! It sometimes causes a panic attack and I’m not so sure the entire episode isn’t a panic attack. I’ve even had to pull over on the side of the road to fix my seat, take my layers of clothing off, adjust…something. It affects my everyday life and I have to stop everything to address it.
I can’t face my past – memories of my healthy self. If I see people from when I was a teenager in the store or in passing somewhere, I have a hard time seeing them or looking them in the eye because I feel like I have died. I had to go through a complete grieving process with this whole thing and I really got tired of having to explain what’s “wrong with me” to everyone. My new social life consists of text messaging and contact through Facebook. If I see someone at Walmart, our conversation is accidental. I need to focus on what I am doing there. I’m barely making it and going to the store is an extreme task that wears me out. Additionally, going to the store, church or my children’s school is a huge anxiety and panic contributor. I do what I am there for, focus on my task and get out. My anxiety radar says, “They’re going to bump you, shake your hand, hug your or ask you how you’re doing! Run!”
I spend twice a month or so in counseling talking about this stuff to a very nice counselor who has a lot of empathy and compassion. It took me all of four years to start this. We talk about how fibromyalgia, hypersensitivities, anxiety, panic attacks and depression affects me and my life. Even more important, I get to vent about how I’m treated by doctors. That’s important because, if you complain about the doctors…they’ll stop seeing you. I’ve had a few doctors say they’ll no longer see me or they flat out don’t believe in fibromyalgia. I don’t always make it in to see her because of symptoms, flare-ups, etc., and she’s aware these are possibilities as I was up front and honest with her that it’s a possibility this could happen. So we have an agreement. As long as I let her know, we are good. I feel like this is very important because for some people with chronic illness, the lack of support and understanding leads to suicide. Our illness is only invisible if we let it be. Educate, hope and pray for a cure!