chronic conditions

April 28, 2021

So Exhausted

Being exhausted is, well, exhausting at times. I know that sounds stupid, probably impossible to believe unless you’ve been so tired that your bones are weary beyond understanding.

If you have a chronic illness such as lupus, life can be very tiring. Part of the problem is that chronic conditions are often “invisible.” Due to the disease’s nature, many chronic condition patients will put forth extra energy to maintain the facade of normality. Frequently, this use of energy results in a lack of it for other things throughout the day.

So chronic illness patients end up working or going throughout their day with a deficit of energy, spending more than they have to pay, so they appear like everyone else.

After finishing your day, you collapse in bed. However, that does not mean your energy will return with rest. You see, if you dig a deep enough hole, it is impossible to get out on your own. You need help.

What type of help? The kind that lets you rest. This kind of help encourages and creates the ability to rest to start to amass energy again. It may be hard to accept this type of help. It may be frustrating to be relegated to rest. However, it permits you the chance to regain what you need to be a part of things again. The whole cycle is exhausting in its way.

March 5, 2021

Did It Again

I stretched out my legs, wiggled my toes, and allowed myself to sink into the chair. We had gone for a long walk, an all-day one complete with a picnic lunch. Beloved had planned it all.

It had been delightful, filled with lovely flowers and trees. Birds were flitting about here and there and all sorts of animals to be seen along the way. There were gentle, rolling hills to climb up and come back down.

I was glad, however, to be back home. I was most grateful for the comfortable chair and a chance to let my sore legs and aching ankles relax. My knees felt as if they were on fire from within while also being filled with a squishy substance.

Beloved happily set about preparing a meal while I rested with the four-footed settling down beside me. She was no doubt exhausted after such a joyous adventure. Her gentle snoring gave away the fact that for her, resting was actually sleeping. For me, it was allowing my aching joints to relax while I read a book and let Beloved do his magic in the kitchen.

Sure, I probably overdid it. Lupus has already affected my joints so much, and this walk would not have helped that. What this walk did help, however, was my soul. It was important to me to carry on doing things like this when I can, even if it results in pain and exhaustion for the next day or so. Not having this chance would be not fully living, in my opinon.

December 16, 2020

A Small Problem

The problem with a chronic illness is it sometimes makes you alter your dreams and hopes. It can make you question who you are, what you thought you were going to be, and even what your life would look like. That’s okay, though, because you are an expert at adapting. Chronic conditions teach you to adapt, to reassess, and find another way.

Of course, the other thing with chronic diseases that you learn rather quickly is that you cannot go this alone. This journey of yours will be filled with many people. Some will stay with you longer than others, from specialists to lab technicians, to friends and people who are hurt to see your ‘new’ life.

The thing is, you are resilient and robust. You are stronger and more resilient than you know, and you will continue to grow in these facets in different ways. You see, the thing about a chronic illness is that you have to be tough to adapt and adapt you will because you have something to do, places to go, and people to meet.

It’s okay to take time now and then rest, reassess, and, yes, even feel cheated. However, don’t stay there too long, there is so much more for you to see and do.

May 28, 2020

A Little Help Please

No one is perfect, some people are better at seeming that way than others, but no one is perfect. We all have flaws. Something life has taught me is that most of us struggling with admitting we need help. Living with lupus has taught me that I need help sometimes. The kind of help that can open things when my hands are too stiff to turn lids, lift tops, or whatever else is required.

Sometimes I need the kind of help that knows I’m going to crash hard into an active flare long before I know it. This kind of help steps in and does what it can to lessen the flare effects.

You’d think that with the amount of help I need, that I would be able to figure out how to ask for it and be gracious in accepting it. Either I am a slow learner or very stubborn because I have yet to be generous in accepting the help when I need it. Please don’t misunderstand; I am genuinely grateful for the help. I am slowly, ever so slowly, admitting when I am in dire need of help.

I know I’m not alone with this, and I know other friends who also have chronic conditions who struggle with the very things I do. Please don’t mistake our struggles with our lack of gratitude; it’s just that it gets tiresome needing help because your body is fighting you.

May 27, 2020

Being Sick Sucks, The Tough Survive It

Being sick sucks. When you have a terrible cold or flu, it sucks, but you know in a few weeks you will be on the mend. Sure, you are miserable for a few days, you may feel like death warmed over, but you know it won’t last and you will recover.

Now imagine feeling like that every day, on a good day with no chance of recovering. Remember, that’s on a good day. On a bad day, it hurts to breathe and move, and you don’t know how long it will be until you have a good day again. This, my dear readers is life with chronic illness.

It sucks, but you keep going on with life, doing what you need to do as best you can and hanging to those good days. You keep on keeping on, taking medications that may have horrible side-effects. Some of those medications are scary to hear about, but what else do you do? You know, if you don’t take it these medications, you will get worse; in fact, your illness may end up leading to your death.

The thing is, most people with chronic conditions are tougher than you’d think because they have no choice but to be tough and keep on keeping on.

May 1, 2020

More Like You

A lady I was talking to today said that she misses a life without joint pain. She has arthritis in her knees, hips, and hands. She seemed surprised when I told her I understand what she was talking about, as I also have joint pain.

She described her pain graphically, impressing upon me that I couldn’t understand because I am fifty years younger than she is. She couldn’t understand how someone who hasn’t had a long life of physical labor would have joint pain similar to hers.

She looked at my hands, noting the swelling in the knuckles and the beginning of some deformity from arthritis. She nodded her head as if it say, “You are just starting your journey.”

The thing is, I have been on this journey for over a decade. My path is a little different from hers because mine is a journey of lupus. This is probably why she had trouble understanding that I could relate to her pain.

You see, it isn’t easy to see who has lupus. We don’t have signs printed on our foreheads. There is no exclusive look to us, we appear, for the most part, to be healthy and just like everyone else. To someone who doesn’t know me, chances are they wouldn’t think I have lupus. To some people who have lupus themselves, they may not consider that I might also have the disease.

Lupus affects different people differently, while for the most part remaining invisible. So next time someone tells you they can relate to something, know that despite how they look, they may be more like you than you think.