Trying to stay one step ahead of the three amigos that plaque my body
I’m trying to stay one step ahead of fibromyalgia,lupus and rheumatoid arthritis but failing miserably.
What does fibromyalgia, lupus and rheumatoid arthritis feel like ?
What does fibromyalgia,rheumatoid arthritis and lupus feel like? What a question to try and answer.
The three are conditions that are all about feelings; the feeling of pain, of exhaustion, of depression and despair. They are conditions which impacts our ability, our confidence,our families and our friends and to make it even harder,they affects all of us in completely different ways.
I have suffered from fibromyalgia,rheumatoid arthritis and lupus for several years now yet I still have days where I am surprised by a feeling or experience of a new pain . I’m fairly active on social media and I know I’m not the only one to feel this — I often read where other’s are struggling with the unpredictability of the conditions.
In fact, I often marvel at their ability to shock me time and time again; just when I think I have it all figured out, I feel something new.
How do we describe such varied, complex conditions
to people who don’t understand it? Even more importantly, how do we describe it to the undiagnosed — or recently diagnosed — so they can educate themselves and seek effective medical support?
What Does Fibromyalgia,rheumatoid arthritis and lupus Feel Like?
I’m a week into a flare-up of all three at the moment, so I really feeling the brunt of the weather change, rain is setting in and I feel as if a dog caught me and as it’s dragging me through the yard it’s somehow signals the cat to come play batting me around until it becomes bored,I hurt everywhere and I have become filled with anxiety knowing there are things in the home that needs to be done. Sweeping, mopping, laundry and cooking. This is when I must look not at what needs to be done in the home but what must I do to make a healthier me. Dealing with physical, mental and emotional aspects of fibromyalgia,rheumatoid arthritis and lupus isn’t an easy feat by no means.
My muscles feel like I went to the gym worked out all night, forthree nights in a row, then squeezed through the wringer of an old wringer washing machine.
My knee joints feel so painful I think it’s about to come apart, like a raggedy Anne doll who has been pulled on,dragged and left to whatever may come it’s way.
muscle spasms that continue for hours as if someone has been froging them as we did to each other when we were children. Remember that?
My fingers hurt with every touch of anything, like as if being squeezed in a vice.
Walking feels like I’m wading through mud up to my thighs and all I want to do is lie down.
I am so tired that my eyes are stinging. Also, I feel like I’ve been awake for 72 hours straight,when, in actual fact, I’ve been asleep for most of that time. Then there are times sleep does not happen at all.
I feel like I’m learning to speak a new language — my head feels completely empty as it searches for words,when I finally find the words I can’t put them in order. The word guessing game asI call it and my poor husband has learned the game well often finishing my sentences.
Then there’s the stuttering which happens when I’m trying to get my tongue to say the words that clearly are running through my mind,and if interrupted while talking I will forget completely everything I was talking about until sometime later it will resurface in my mind where I can then complete my conversation with the person.
I feel sad and disappointed. Even though I know and understand the pain cycle, it’s like I somehow thought this time would be different.
My head feels so heavy and my neck feels as weak as if it has no bone structure for it to possibly hold the weight of my skull yet I know there are bones because the pain in my neck is severe.
I look down at my shoe and my laces may have come untied. I feel like everything is falling apart, like this is the final straw. The thought of having to bend and sustain that position or lift my leg to tie the lace is too much. I take my shoes off and relieve myself of that issue, I now wear more slip on shoes to avoid tripping over untied laces.
The tips of my fingers are tingling, and every touch of the phones screen stings,yet the prickling continues inside my hands.
The skin on my back stings with pain at the same time as feeling deeply bruised. It’s like a full grown elephant is sitting on me,the weight is unbearable and the stinging burning under the skin following intense itching then the stinging burning pain once again.
Everything feels so tight, like if I could just lie down and stretch everything will feel better. But it doesn’t; it bounces back just like a slinky.
My mind is full of energy; I want to go for a walk and cook dinner and do the washing, but my body is so sore and tired that I can’t even face getting up for a bath. Yet I do in hope’s the heat of the water soothes the pain, it doesn’t sooth anything for long.I am so frustrated.
I feel distracted and ever so slightly sick to my stomach and a headache feels like it wants to come but doesn’t thank God. I am anxious, but I couldn’t tell you why.
I’m so itchy. Everywhere !!! Scratching provides some light relief but the sting after I’ve scratched lasts far longer than I can stand.
I feel angry. I am so exhausted, so sore, so frustrated and nobody seems to understand this pain. Why am I no further along with this freaking condition than I was several years ago.
Then the pain in my feet, It’s on the top of my feet, my toes hurt,the arches hurt and feel like they’re on fire. I grin and bear all of this as not to bother those around me with my aches and pains. I further isolate myself from the world and those around me.
I often go into a depression when in a flare because I feel as if I’m a burden and not an asset. I am the caregiver not the one cared for yet I lay in bed where the mattress pad heats my body to keep the pain at a minimal,praying the flares are not long lasting and trying to figure out what I may have done to trigger a flare of all three rheumatoid arthritis, fibromyalgia and lupus. I then blame the weather.
The brain fog I believe outside of pain is one of the worst because it causes me to have times when I cannot think of where I’m going or what I’m doing, like a form of dementia but not.
This is exhausting in the least, naps are often needed when I’ve not exerted myself.