What Life is Like With Multiple Autoimmune Diseases
Dealing with multiple autoimmune diseases has been the biggest challenge of my life. Eleven years or so ago, I was diagnosed with myasthenia gravis (MG). And, this past year, I received a diagnosis of Mixed Connective Tissue Disease (MCTD), although I received variations of the diagnosis for many years.
The components of my mixed connective tissue disease are part lupus, part myositis, and part Sjogren’s.
One of the more difficult parts of suffering from multiple illnesses is trying to decide which illness is responsible for certain symptoms, though I’m starting to nail that down better.
Each day I awaken, I’m reminded that life is not normal for me. Sometimes while in bed, I feel like it may be the day that things will be better.
But, as I rise and stand, a heaviness pervades my body and many of the joints in my body hurt. Parts of my body are so stiff that I can’t straighten them adequately. I often say that I feel like the Tin Man from the Wizard of Oz. I feel as though my body needs lubrication.
It feels as though there’s lead coursing through my veins instead of blood. My bones and muscles hurt so much that there are days I convince myself that I must have cancer all over my body. I think I must be dying to hurt like this.
It’s definitely a mind-over-matter attitude that gets me going.
Think about how you feel when you have the flu. It kind of feels like that but multiplied. In fact, it’s often hard for me to tell when I have had the flu because of feeling like that pretty often.
The giveaway is usually chills and a minor fever. I rarely get a high fever because I usually run low, to begin with, and with autoimmune illnesses, my body just responds differently.
I begin my day by getting my husband and I breakfast and seeing him off to work. Once he leaves, I meditate and have recently made an effort to start exercising more regularly. I’ll be writing about that later on.
I then shower and begin my day as a freelance writer and author. In between my assignments, I’ll try to put a load in the laundry. I try to find reasons to get up and move often so I don’t stay sitting for longer than an hour or so at a time.
Throughout the day, my body alternates between pain, stiffness, and heaviness.
Writing has become increasingly difficult this year as my hands often become swollen, stiff, and painful. Sometimes I can’t even open my hands and fingers all the way and they are slightly curled. Meanwhile, I’m having to tap away at the keys to make a living.
Some people think that because I can write or work that I must not be that sick. They just don’t understand the determination it takes to do so.
I’ve never been the type of person that does nothing. I think if my life really did become that, I would give up. I’ve always had to be productive and just because I’m not well doesn’t mean that I can’t strive for that.
I also have fluctuating breathing and swallowing issues. At times, my diaphragm gets very stiff and it’s hard to take a deep breath. It feels like sticky glue.
People take breathing for granted.
I’ll never forget the first two times I had my IVIG treatments. When the infusion kicked in, I could breathe a deep breath without effort for the first time in years. It was pure bliss. You just can’t imagine unless you’ve been through it.
Sometimes I choke pretty badly while eating. My husband has had to perform the Heimlich maneuver on me before. And, once when I was alone, I sent him a frightening text “I think I’m choking.” I couldn’t speak as the food was completely blocking my airway.
Poor guy. I think it scared him, but I was finally able to dislodge things on my own.
After the two-hour mark of typing, my MG starts attacking my eyes and my body. My vision gets so blurry, I can no longer make out my computer screen very well. Sometimes my vision also doubles.
My vision issues are usually the first warning sign that I must rest. Most of the time, I push as long as I can. It usually gets to the point that my body lets me know that if I don’t lay down for a little while, I might collapse. It gets harder to just hold my body up.
So, I’ll usually lay down and close my eyes. I usually can’t sleep during the day, but I just allow myself to get into a deep meditative state so my body can rest and recover. I’ll usually lay down an hour or so and get up and do it all over again.
At times, I have to repeat this cycle a couple of times throughout the day.
Somedays, I’ll decide to cook or meal prep. Every time I do though, I say never again. I used to be a gourmet cook and spent long days cooking.
These days, time in the kitchen usually means dropping dishes and working myself towards a severe unsteadiness. I also have weak shoulders and it’s hard to do activities with my arms for long.
Standing for long periods of time is also difficult because my lower legs tend to go numb on me. This has caused me to fall at times.
So what do I do? I tend to avoid the kitchen these days. Which means picking up food more often and eating things that aren’t the best for us, though I do try.
The best thing you can do if you know someone with a chronic illness is to bring them a meal. Seriously. And strive for something healthy.
As the day goes on, my brain fog worsens. It gets harder to put an article together and some days I even question whether something happened that day or the day before. The days start to run together.
Of all the symptoms I’ve mentioned, there’s one that I haven’t mentioned yet. For me, the worse thing is the profound fatigue and exhaustion I feel all the time. There are many days that I get little to no relief from it.
I think it must be due to the MCTD because it’s been the most prominent symptom for several months now. Though I’m finding that the little exercise I’m doing is helping that.
I’ve had to learn to manage my days better. I turn social media off during the day as much as I can and I ignore interruptions. It’s the only way I can function and get a minimal amount of things done.
I have to stay focused on any task I’m doing or I won’t be able to do it. It’s the only way I can work as a writer.
I’m amazed that I can work as a writer. I question every day how I was able to accomplish my work. And the answer is always the same. If not for God….
I wish I could get others to understand that no one wants my life to be more different than me.
I feel like there are two versions of me. There’s the version that struggles with disease. Then there’s still me, still inside and struggling to break free of my disease.
I’ve had people get hurt feelings when I can’t commit to doing something. It’s also hard for me to travel. Riding in a car for more than an hour at a time is very hard on my breathing and diaphragm. It’s hard to sit straight up for a long time without it compromising my breathing. My body also gets very stiff.
At least at home, I can get up and down, do stretching exercises, get more comfortable, etc.
Even though I’m not well, I have dreams and desires just like everyone else. I’m still alive and breathing.
I would like nothing better than to jet set somewhere and have a nice, real vacation.
Most of all, I’d like to be able to fly and see my daughter who lives 1500 miles away.
At this point, I’d be content to visit a bed and breakfast in a nearby town as my husband and I have in the past. But, finances won’t allow for it right now. When I tell you I need a vacation bad though, I’m not kidding.
People sometimes think that those with chronic illness are no longer people with desires and dreams. Nothing can be further than the truth.
If you know someone with a chronic illness, the best thing you can do for them is to help make them feel part of the world. Many of us are stuck home for much of our days. Because we aren’t working full-time jobs, finances tend to be tight.
Many of us don’t have vehicles to get around. Arrange to bring a chronically ill friend or family member to get their hair done, go to the movies, or have coffee.
We want to do things that make us feel part of this great big universe. And doing things that involve self-care makes us feel alive — like getting our hair done or even going to the chiropractor.
And I’ve learned to do it. It’s not easy. But, I won’t give up. And I always have that seed of hope in my heart for a better day.
Thank you for reading my story. If you liked this article, you may be interested in these as well:
What Life is Like With Multiple Autoimmune Diseases
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