Chronic Illness is Hard Work
Guest post from Lydia at BeingLydia.com
I know there are people who don’t really know me well enough that believe that I am a lazy, whiny hermit with mental problems. These are people that have been in my life for years, but they just don’t get that I have real health problems.
I am sure many, or even most of us with chronic conditions know at least one person like this.
The reason I bring this up is that to these people the statement in the title is laughable. Unfortunately, it is very serious and true.
A couple of weeks ago I went for an appointment with a surgeon regarding a hernia that needs repairing. I have seen him before and am totally comfortable with him so that meant I didn’t have to deal with the anxiety that comes with new appointments.
Because it had been longer than six months since my last visit, I had to fill out all the initial paperwork out again. There were three or four pages and I had forgotten my “cheat sheet” that contains all pertinent information like meds, surgeries, diagnoses/symptoms, allergies, and doctors. So, I had to fill this out with my fogged memory and arthritic hands.
Hubby got there from parking the car and helped me with the last page. By then I thought my hand was going to fall off.
We went in to see the doctor and after examining me he agreed that we need to do a repair on the hernia as it is getting bigger and more uncomfortable. I do not want surgery because every time I have one, a lot of internal scar tissue develops, causing other problems. Remove the scar tissue and more forms. But I trust him and I know I will feel better when it is done. He says he will do it the least invasive way he can.
We got out of the room and the receptionist hands me a stack of papers to fill out for the surgery. A lot of the first pages were the same as the other set I did earlier, but these are for the hospital. Hubby and I took turns writing and thinking!
By the time we left that office I was exhausted. I didn’t really do a lot, but I don’t have to. Getting up earlier than my normal time, getting showered and dressed, having breakfast, feeding the pets, and brushing hair and teeth uses about 90% of my day’s energy. Then there is the drive, find parking, go up to the office, and, well, you know the rest.
That was just a simple doctor’s appointment.
The other day I had to go to our local outpatient center to have a swallow test done to determine why I am choking on food, water, pills, air. There was no prep; however, I had to do the same morning routine as for the doctor, then once there Hubby had to help me into a gown and walk back to the waiting area. I was called to a room without hubby. The whole test took maybe 15 minutes, then it was back to the change room, where hubby met me, then back to the car and home. Again, I was exhausted and in pain when we got home.
So, besides the everyday pain and fatigue and other symptoms people with chronic illness face, normal tasks can wear us out. Here are a few examples from my own situation.
- I can put my own (slip-on) shoes and boots no problem – when I am home and have my long shoe horn. If I am out, someone has to help me with at least the left one.
- If I am very tired and/or sore, I will have problems changing clothes as I can’t get my arms up to pull things over my head. I can no longer deal with small buttons, back zippers or closures, or back ties.
- I need to make sure I get some form of exercise in a day, whether that is a short walk, some simple stretches or a couple of minutes on my exercise bike. If I get too much walking or movement, I will flare up one or more of my chronic pain conditions.
- Talking can be an exhausting endeavor, especially over the phone. This is partly that the action of using my jaw and vocal chords is exhausting and also because I can lose focus mid-sentence.
- Thinking is not one of my strongest suits anymore. I used to have a razor sharp memory and now I am doing well if I remember what I want in the fridge 2 seconds after I think about it!
- Riding in a vehicle for any distance can be very demanding. Why should sitting in a car, when you aren’t even driving tire you out? Because of bumps, turns, stops, etc.
I could go on but I think you get the picture. Now I have written things that affect me; however, many chronic pain (or other illness) sufferers will have similar lists.
Don’t be afraid to ask us why we won’t, or more likely can’t, do something. I am sure there is a reasonable explanation and knowing it will give you some insight into our world.
I am a woman, wife, Christian, mentor, writer, crafter and dreamer in my late 50’s. I have just claimed my life back after many years of being controlled by relationships, fears and illness. In all this I have found out how great it is to be Lydia and I strive to share that openly in my blog, “Being Lydia”. I hold (almost) nothing back.
I have experience in technical writing, data administration, web design/development, graphic arts, catering, cake design, mentoring young women and advocating for both mental and physical health concerns.
My health challenges include Chronic pain from a triple lumbar fracture, a full knee replacement complicated by scar tissue, osteoarthritis, fibromyalgia, migraines, Chronic Fatigue Syndrome, IBS, Asthma, Chronic bronchitis/pneumonia, Chronic kidney stones and infections, Bipolar, depression, OCD, anxiety, panic attacks, Bingeing disorder, Prediabetes, Undiagnosed throat problems causing difficulty swallowing and speaking, Absence seizures, insomnia, and vertigo. Be sure to visit Lydia’s blog @ BeingLydia.com