My Invisible Daily Struggles as a Person With Chronic Pain

I wake up nauseous and dizzy with a flu-like body ache; it’s hard to get motivated and out of bed. Sometimes it takes almost an hour to be able to move enough to get up. My muscles are aching and screaming in pain like I overdid it exercising yesterday, but I couldn’t because it hurts too much to go to the gym. My hands hurt from arthritis and contractures in my finger ligaments make them difficult to move sometimes.

The shower randomly feels like hot acid being sprayed on my skin, my feet and hands feel like they’re on fire and it’s hard to shampoo my hair since it hurts to raise my arms up to my head. I often go days without showering if I’m not going out. I have to rest for a bit after showering and other seemingly “normal” household chores and activities because I’m fatigued from the exertion and strain.

Sometimes my eyes have a hard time focusing and one or both are randomly blurry. The drops my ophthalmologist gave me work a little, but not always enough. I can also have a hard time focusing my mind, and at times feel like I’m detached from my body and have brain fog.

It can be hard to get in and out of the car because my muscles won’t move the way I want them to. Sometimes I get strange looks if I park in the handicap spot because I don’t “look” disabled, even though I have a legal disability and DMV placard. And driving, riding or flying for long periods can cause severe muscle pain from sitting in the same position without the ability to stretch out or move around.

 

Walking or standing can make me dizzy, fatigued and my muscles painful, so sometimes I have to stop, sit and rest after just a short period. Using a cane for balance and support makes me feel self-conscious and people sometimes give me strange looks. Being fatigued all the time is rarely from lack of sleep; it’s from my own body’s immune system fighting against it 24/7/365.

Sleep can also be difficult at times since I can’t always get comfortable due to my body aches and muscle pain. I have to get up often to use the bathroom since my bladder is also affected by my condition – then add in some irritable bowel syndrome (IBS) just because my body can. Then there are the sleep issues, where it can come in short bursts or not at all some nights. I am almost always tired as well as fatigued all day from this.

Work can be exhausting, even though it’s only a few hours a day. My doctor recommends only part-time sedentary work since over-exertion can cause damage to my muscles and body. Finding a job like this is difficult, especially if you have no degree, experience or formal training.

I have been accused of faking my illness and being lazy. I don’t enjoy not being able to work full-time, being forced to change jobs, taking a significant pay decrease and having all of my medical bills perpetually in collections – to the point that they created a special automatic withdrawal account so they can get paid regularly. I don’t understand why someone would fake their illness, just to be in deep debt and at the mercy of their doctors and many medications. My sedate life has nothing to do with “laziness” and everything to do with managing my illness and all its side effects and baggage.

Doing chores around the house can be difficult because I can’t exert my muscles like I used to, plus I’m exhausted from working even though it’s only a few hours a day. Stairs can be treacherous and I fall down them at times, injuring myself. My doctors ask at each appointment if I feel safe in my house. Sometimes I say no.

Paying the bills becomes difficult since I can’t work full-time and I’m not eligible for disability. I’ve gotten rid of “luxuries” from my budget like name brand foods, TV cable, new clothing and air-conditioning, just to save money. I’ve learned to “eat on the cheap” – buying my food at the dollar store and discontinued bin at the market. They are not always healthy foods. I buy my clothing off clearance racks and from thrift stores (that’s where most of my work clothes came from). I frequently get “low balance” messages from my bank, and my savings and IRA are almost totally depleted from having to tap into it just to pay bills.

Because I’m fatigued and in pain, I sometimes skip meals or eat take-out because standing at the stove or even stirring a pot can hurt. Grocery shopping can be a painful experience – not to mention carrying the bags into the house. I frequently make multiple trips and carry one or two bags at a time, and if I’m lucky someone might be available whom I can ask for help.

I take dozens of medications, supplements and vitamins because my body can’t function without them. They can make me gain unwanted weight and are not cheap! I keep a file with all of my medical bills and prescription receipts so I can write them off my taxes and save a few dollars each year. I can get some of my vitamins and supplements cheaper at the dollar store.

I usually don’t really look sick in public. It’s covered up with makeup and I fake feeling good by forcing myself to laugh, smile, not wince in pain, limp or stumble, and I act as though everything is great. It’s all a painful lie and I struggle in silence.

Dating can be very difficult since there are many activities I just can’t do. Bowling, museums and easy hiking used to be my favorites, but now they’re pretty much impossible unless I’m having a rare low-level pain day. Those don’t come very often and are totally unpredictable. Many men and women out there in the dating pool just don’t want to enter into a relationship where one partner is physically impaired and is limited on what activities they are able to do, and making plans in advance is almost a joke. Though I am very lucky to have an extremely supportive partner who has been with me from almost the beginning and has his own limitations that I accept as much as he accepts me and mine.

When asked my pain level on a scale of one to 10, I ask, “My scale or yours?” No matter what they say, it is different. On my scale I can be a four today, but on a doctor’s scale it’s probably closer to an eight. But since my body is in pain all the time I have to endure it and it changes my perceptions. I have to see my many different specialty doctors and pharmacy techs so often that the staff knows me by name when I walk in the door.

Your main diagnosis can cause dozens of other comorbidities, making it even more difficult to function on a daily basis. I have degenerative connective tissue disease (an autoimmune disorder) along with fibromyalgia, Sjögren’s syndrome, allodynia, arthritis, IBS, OAB, Dupuytren’s contractures, menstrual issues, paresthesia, trigeminal nerve paralysis, eye dysfunction, vertigo, random nausea, moderate to severe muscle pain and weakness, weak and/or floating joints, back, hip and shoulder pain, carpal tunnel syndrome, chronic fatigue, headaches, clouding of consciousness (fuzzy brain), mobility issues, anxiety, depression and an overall reduced quality of life that – when I’m in public – I often pretend isn’t a problem. I’d love to have my old life and day-to-day normal activities back!

When I talk about my illnesses I am not looking for sympathy. I am looking for a kind ear, moral support and understanding. It’s called an “invisible illness” for a reason, and it’s very real!

I struggle with chronic pain every minute, hour, day, week and month, and will for years to come.

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Thinkstock photo via natalie_board.