I haven’t had any time to blog lately. For many months now. And for the last week or more, I’ve barely even posted to Instagram. I haven’t logged onto facebook, I haven’t even checked my messages.
I just don’t have time.
And yet…the overarching opinion of those who are supposed to be close friends and family is that I basically lie around all day doing nothing, living an enviable life of luxury.
This really peeves me off!
Yes, I do spend quite some time lying or sitting down. And yes, I do that on the couch. Unfortunately, that’s the way life is when you have a physically disabling illness (or two). I know that most people who read this blog are in the same boat. Rheumatoid arthritis, or maybe another form of inflammatory arthritis, can be a disabling disease. But due to its invisibility, some people find it very difficult to believe that I am sick.
Apparently, I look just great! Healthy. Good. Not sick.
I’ve been blogging for years, but the truth is I don’t TALK about my health very much. I learned very early on, way back when I was first diagnosed, that no one is interested in talking about my health problems. That when I tried to talk about my health, people just changed the subject. They didn’t listen. They didn’t ask questions. They changed the subject. They were not in the slightest bit interested.
The most common response?
“Oh, arthritis? Nothing serious then! Have you tried Fish Oil?”
Yes, actually. Yes, I have tried fish oil, and everything else that has a smidgen of science behind it.
Sadly, my disease has progressed, the way progressive illnesses tend to do. It has become a little more than an annoyance that a little fish oil can fix. It has become a full-blown, disabling disease. And yes, I’ve taken all the medications as prescribed, I’ve followed the diets, I’ve done the physiotherapy and the exercise. I’ve done the CBT and the ACT. I’ve kept busy and I’ve been mindful and I’ve meditated. I’ve consulted many, many doctors and several alternative practitioners. I’ve visualised my disease shrivelling up and disappearing, I’ve “seen myself in the future, strong and healthy and well”. I’ve repeated the affirmations, I’ve kept the gratitude diary and I’ve taking the expensive supplements that probably don’t even contain any active ingredient.
And still, my proressive, disabling disease has progressed. Nothing has managed to stop it in its tracks. Which is unfortunate. For me.
Because no matter how complaint we are, not matter how positive we think, no matter how hard we try, incurable diseases tend to stay incurable. And they tend to progress, as in, get worse.
I have mostly managed my disease quietly, and written about my experiences here. When I do catch up with friends, mostly they don’t need to ask, because they read my blog. No need to discuss it. I don’t bring it up unless they do.
For those who don’t read my blog, same applies. I don’t bring it up unless they do. I tend to keep a smile on my face and a happy demeanour when I’m with other people, because I don’t want to be a sad sack. I have plenty of people in my life who complain rather constantly, and enjoy long term games of ‘my pain is worse than your pain’ and I very much dislike that game. So I don’t encourage it, and I try very hard to avoid those conversations.
The result is that many people who are supposedly close family or friends don’t even know what diagnoses I’ve gathered over the years. They know I have RA, and they invariably have a friend or family member who also has RA, but they aren’t really that sick. They take their meds and go into remission.
Those around me have a strong idea in their head what RA is, and its certainly not a disabling disease. And nothing will shake that idea in their head. So if I’m spending my life mostly at home then I must be choosing that life. And it sounds great to them – living with a chronic disease is a lazy, comfy life on the couch. Watching movies and binging Netflix. Enjoying life, living to the full.
As if you can call living on the couch any kind of ‘full’. As if being housebound is any kind of fun. The current COVID-19 crisis has taught some that living your life stuck at home in social isolation is NOT fun. Yet they don’t seem to make the leap that my life has been like living in lockdown for many years.
People don’t like to shift their biases. It doesn’t happen easily, it takes work. It takes work on THEIR part, so the misconceptions continue.
And continue to peeve me off.
My sister told me she’s jealous of my life. Which only proves that she knows NOTHING about my life.
Have you ever had someone tell you they envy your life? Envy that you don’t have to go to work? That you get the best parking spots? Yeah…I’ve gotten that a lot. Never from people who are prepared to spend a week in my shoes. Or even a day.
On good days I have six upright hours. On bad days I have maybe two. Some days I have none.
Those six hours aren’t ‘free’ hours. They include showering, prepping food, cleaning up after, eating, dressing, basic personal care. Those six hours are whittled down to four when you take all of that into account. On a bad day, I am just going through the motions of sustaining life. And on the ‘none’ days, I’m lucky if I move from the bed to the couch and back again.
I am a single mother. I have one child who has a disability, and one child who has ongoing medical problems. I average three medical appointments a week, between myself and my kids. Even my dog has health problems. She’s a purebred, pedigree German Shepherd. I spent a lot of money on her because she was supposed to be sound and was bred for service dog work. Unfortunately, dog breeding is far from an exact science, and she has a nervous temperament, and she has severe allergies and other health and behavioural problems. She will never be the service dog she was bred to be. But I love her and she IS my support dog. Dogs are not objects, you can’t return them or exchange them. I’m sad that she has all these issues, and I really can’t afford the expense, but I wouldn’t change her for the world.
She does, however, take a lot of my time. Vet trips. Daily training. Daily walking. I spend at least an hour a day working with her. Or I’m supposed to.
I am recovering from my spinal fusion, so I need to do an hour of exercise and physiotherapy a day.
I run a small business and I am getting a second business off the ground. I spent 3-4 hours a day making product, packing and shipping.
Some days I need to shop. Some days I need to clean. Some days I have medical appointments.
How many hours is that so far? Six or seven, and that’s not including personal care. That’s more hours than I have. So you can see, some things don’t get done. Some things get missed. Its either ship my orders or have a clean kitchen. Vacuum the floors or do my physio. Wash my hair or train Bella.
And I am always running behind, chasing an impossible goal.
Bottom line? EVERY waking moment lately, I am working. My whole life is either cleaning something, training something, selling something, waiting in a waiting room, or talking to my kids, helping them with their problems, or talking to a doctor or therapist about their problems. Or paying bills. Or making, marketing, shipping product. Or working on the website. Or answering enquiries.
I am either working hard or collapsed in a heap. On the couch. Where I am NOT having fun, NOT watching Netflix! I’m either passed out completely, or in too much pain to sleep. My hobbies in life include working and aching. And not much else. And I don’t see a way out of this. Without my business income, I can’t pay the bills. Without my physio, I won’t improve my physical function. Without spending time with my kids and helping them, they will suffer. I am a mother first. Without working with Bella she will deteriorate. Without attending medical appointments, mine or otherwise, our health will suffer. It’s an impossible situation.
All the things I need to manage would be hard for a healthy person.
I am sick. I am disabled. My life is not a snooze-fest on the couch. I need to make money. I need to look after my family’s physical and mental health. I need to do domestic chores, cook dinner, dishes, vacuum, wash. I need to chase my teenagers to pull their weight. Nag them to do their chores. I need to take care of myself, do my physio, exercise. I need to care for my dog, she is family too.
I do not have enough upright hours in the day to get through everything I need to do. I feel like I am always running against the tide, and therefore always under pressure. I never make it around, and I never get to the end of my to-do list. I’m always just scraping by. There’s not a lot of satisfaction in that.
I haven’t done anything for pure pleasure or leisure in months. I haven’t done any artwork. I haven’t done any study. I haven’t done any music. I haven’t even done a crossword. I haven’t read a book.
And my life is not fun. It’s actually quite miserable. I’d happily trade with my sister, since she thinks my life is so great. I know she’d trade back after 15 minutes in this body!
She used to get migraines when we were young. I used to feel so sorry for her, I could hear her crying and throwing up and she’d spend the whole day in a darkened room. I felt so bad for her.
Before my three-level spinal fusion, my life was like having a migraine every single day. Maybe worse. Did she feel empathy for me? Nope. She felt ENVY. Which I find pretty abhorrent.
So the perception that my life is a picnic and non-stop party of endless Netflix and snack foods, really, REALLY peeves me off. Really.
But you know what? I don’t care anymore. She, and the others who think my life is a non-stop couch party, are ignorant. They are self-absorbed. They lack empathy. They lack compassion. They lack imagination. They lack insight. They lack life experience. They lack intelligence. They lack humanity.
I am not going to let them bring me down. I am not going to let their attitudes affect me. Trying to change their feelings towards me, and their treatment of me, is a losing battle. They don’t want to change. They feel no need to be kind.
They are no longer a part of my life. For the reasons stated above, I don’t exactly have much time on my hands, I am wasting no more on them. I’m not going to keep trying to explain, and I’m not going to apologise for looking so well or make excuses for it. I’m not going to keep trying to get the empathy and understanding that I need and deserve from family.
People will always see what they want to see, believe what they want to believe. And they believe that I’m healthy, lazy, and lucky.
So be it.
Does your family support you? Do they believe you? Do you have anyone who really understands and is there for you?