What’s going on with Rachel? If you follow my social media accounts you likely know that I’ve had a rough couple of months filled with ER trips and doctors appointments. Now that we’ve talked to my doctors fairly thoroughly I thought it was time for a health update.
Stress, Stress, Stress…
Right now my doctors are fairly confident that this flare is my body’s response to some major stressors. At the beginning of the year, I had started a medication for my POTS/NCS that ended up lowering my potassium and landing me in the ER with significant hypokalemia. As dramatic as it sounds, I thought I was dying. I wasn’t warned about the medication lowering my potassium so I wasn’t looking out for it and had never experienced anything like it before. All I knew was that my body was telling me that there was something seriously wrong. For the next several months we did thorough testing to ensure that the potassium drop didn’t do permanent damage to my heart since I’ve had significant chest pain ever since. Thankfully my heart is totally fine. Read more
Sometimes I wonder if doctors have a list of “illnesses” that they diagnose difficult people with just to pacify them; just to quiet those people that insist they don’t feel well even though their tests come back fine. Sometimes I wonder if there are illnesses that all doctors recognize as “fake,” but are given like sugar pills to patients deemed dull-minded attention seekers with wild imaginations.
It’s ridiculous to think this, I know. But after six years of being disbelieved about the symptoms you’ve lived with every day, it’s impossible for it not to affect the way you think about everything. It develops a mindset that is difficult to shake.
Many patients wait years for a diagnosis, bouncing from doctor to doctor, test to test, hoping and praying for answers. Illnesses like Dysautonomia are often misdiagnosed as a mental illness because, despite the patient’s complaints, nearly all of their tests come back within healthy ranges.
One of the greatest difficulties of chronic illness is the limbo between your symptoms presenting and receiving a full diagnosis. To suffer through this time without any answers is difficult enough, but to add to that the pain of doubt is like rubbing salt on an open wound. Read more
The limitations of chronic illness are many and are unique to each person. The realities of “I can’t” are much of what makes depression so common in those who are chronically ill. For me those I can’t’s feel like a weight tied to me, holding me back from things that everyone else takes for granted. While everyone else complains about their jobs, I see them going to work each week and find myself fighting discontentment. I can’t work right now. I can’t support myself. I can’t.
Saying “I can’t” may seem to go against all the chirpy, peppy, go-get-’em, reach-for-the-stars crap we’ve been fed since childhood, but there’s a lot of good in realizing and coming to terms with what can’t be done. It’s healthier to understand your limitations than to push until you burn out, right? Exceeding your physical limits isn’t an option when your body is already in distress. It’s a difficult reality that we face on a daily basis.
But for myself and many others with chronic illness, it doesn’t end there. We learn to re-evaluate and prioritize. The truth is that we can’t do what many others can, but that doesn’t mean we can’t do anything at all. There’s this ambition ingrained in us that doesn’t die, even when it’s crippled by frustration and depression. Maybe it’s the little kid in us that is only fueled by being told we can’t do something. Maybe it’s our human instinct to “do”. To create. To add something to this world. Whatever it is that inspires us, chronic illness is the obstacle that tells us it’s impossible; but it’s also the thing that forces us to think outside the box and make our own path. Read more
My husband and I have been married just under two years now and all I can say is that I’m so glad he didn’t marry me for my housekeeping abilities. It’s not that I don’t know how to clean, my mother made sure that wasn’t the case. It’s not even that I hate to clean, I honestly ache to just clean my home from top to bottom in a single day.
No, alas, it’s that chronic illness has a way of squashing every good intention with its never ending limitations. I live in a world of trade-offs and exaggerated consequences. I spend my days bargaining to get the most out of my energy, but my reward for cleaning is more fatigue and more pain.
If you’re in the same boat, you’re probably looking for a magical list that will impart to you a profound wisdom and result in an impeccable home. You can stop reading and go hire a maid. The truth is, if you’re chronically ill and cleaning your own home, your house isn’t going to be impeccable. Let’s just get that laughably unrealistic notion out of the way right now and, instead, go for something actually attainable.
How does the word “adequate” sound? Isn’t that just music to your perfectionist’s ears? No, but really. Let’s shoot for adequate. And the first keys to adequate housekeeping are all about your mindset: Read more
You get a lot of advice when you’re chronically ill. Some of it good, some of it confusing, some of it frustrating. And, to be honest, I’m still trying to figure this one out. In my mind, I toss this in with “think positively” and “remember there are people who have it worse than you.” It’s something that initially sounds like constructive advice, but by the time you’re through thinking about it you’re left feeling frustrated and lost. Why? Because it’s woefully incomplete.
The truth is that, if you have a serious chronic illness, it’s going to define you. If this illness is strong enough to disable you from a “normal” life, it’s time to accept that this is part of your existence right now. It’s going to be a crucial aspect of your life that refuses to be ignored. We’re not talking small life details here, we’re talking things you tell someone before you even start dating them.
Why? Because this affects the way that you live your life and downplaying its validity belittles the full reality of what you awake each morning to face. It leaves you feeling worthless for being so exhausted from fighting; because why would you be exhausted from fighting a battle that isn’t difficult? How can you be so weary from something that isn’t a big deal? Why is it such a struggle to thrive? Why are you the only one failing so miserably at normal, everyday tasks? Read more