What If This Flare Never Ends?

It’s one of the biggest fears chronically ill people face. The fear of a never ending flare. That a setback will result in a permanently reduced baseline. That the worst day will become our new normal

It’s been a rough few months. Those of you who follow me on various social media platforms may have noticed that I was uncharacteristically quiet for most of September. I wasn’t publishing Disabled Ginger articles either.

Why? I got hit with a massive flare that I didn’t see coming. I wasn’t prepared for it, and couldn’t quite cope.

Such is the nature of chronic illness. We often know the types of things that cause flares. We learn how to pace ourselves. We understand our limitations and how to work within them to minimize damage.

But it’s not always enough. There can (and will) be flare ups that are outside of our control. That happen despite our best efforts and end up dragging on far longer than we could possibly imagine.

That was what happened to me in September, and I’m still battling the effects of it today.

It started with my microwave breaking down. I know, it’s “just” a microwave right? Unfortunately when you’re chronically ill, things breaking down can have a much larger impact on your baseline.

Why? A multitude of reasons. I’m housebound so I can’t go to the store and replace something if it breaks. I have to order online and coordinate someone to help with delivery. It’s not a ‘simple’ solution.

In the case of the microwave, it happens to be one of my accessibility tools. As I explained in a Note that I shared at the time, I’m no longer able to safely cook using the stove or the oven. I do everything in the microwave.

When people assist me with cooking they freeze individually sized portions of safe food for me and I reheat when I’m strong enough to eat.

Without the microwave, I had no food. My MCAS is so severe I can’t order takeout, and I can’t tolerate any prepackaged meals or anything with preservatives. In short, I was stuck.

I find that non disabled people can’t possibly comprehend this. They assume that we must be exaggerating. That we’re looking for pity or perhaps just unable to come up with reasonable alternatives.

The truth is disabled people are excellent at contingency planning and finding creative solutions. We spend our whole lives adapting to survive. If we say there’s no easy solution, there really is no easy solution.

We have back ups for our back ups. We try and plan for every possible catastrophe because we know how much a setback can harm our baseline. But you can’t plan for everything.

When you lose your health, a degree of resilience goes with it. That is not our fault, it’s just the nature of chronic illness.

I couldn’t plan for my microwave to break, nor could I possibly fathom that event would kick off five weeks of declining health and flares that were worse than I had seen in years.

When One Domino Falls…

More tend to fall with it. First it was the microwave. Thankfully I had someone loan me a spare so that I only had to go three days without food. But the spare didn’t seem to be working right. I noticed that I felt ‘off’ whenever it was running. I would get flushed and was developing hives on my arms and face. My body didn’t want to accept the food that I cooked in it.

Sure enough, there was something wrong with it and it shorted out a few days later.

Now I was back to square one with no microwave, no ability to cook food and two broken appliances cluttering up my very teeny apartment.

I was starving, cranky and growing weaker by the day. Thankfully a kind person offered to buy me a new one, and another person picked it up and brought it to my apartment for me.

Without these acts of of kindness, I would probably still be laying in bed wondering how or when I was ever going to eat again.

That is the reality of severe chronic illness. You are devastatingly dependent on others for basic activities of daily living and survival.

Once the microwave was set up, I truly believed I was going to start to recover.

The universe had other plans.

My HVAC broke next. I can’t go without air conditioning because of my heart issues, so I had to vacate my apartment.

I’m practically bedbound, so going anywhere is a huge production. Just leaving my house results in a multi-day setback. Having to leave for multiple days and stay somewhere unfamiliar? It can wreck me.

Thankfully another friend was willing to put me up, but the change in environment caused a massive mast cell reaction. It was so severe I didn’t even realize what was happening to my body until I was in full blown anaphylaxis.

By then it was too late. The damage was done.

I went home as soon as I was physically able, only to find that my washing machine had also broken.

When you’re living with MCAS, you have to wash your belongings a lot. Any dust, scents or triggers on clothes can cause serious health issues. Bedding, towels and rugs need to be constantly laundered. It’s exhausting but necessary.

Unfortunately the machine ruined a large number of my clothes and textiles before I realized there was a problem, and it left me with nothing clean or safe to wear. It also meant I couldn’t wash any of the items I took to my friends house, and they were covered in allergens and needed to be thrown out.

That was the moment that my body basically shut down.

Between the physical and emotional exhaustion, the mounting financial pressures and the unrelenting allergy attacks… it simply gave up.

I don’t have the strength to hand wash clothes. I can’t use a laundromat or dry cleaners because of how severe my sensitivities are. Even new machines can be a risk because they off gas VOCs.

Nothing is simple or straight forward and all my careful contingency planning and flare survival tips were no match for the crushing weight of things going wrong all at once.

That’s why I disappeared. It was too much for my body or my brain to handle. I crashed into bed and didn’t emerge for days. When I was able to be conscious, I spent all my spare energy trying to solution the problem.

Trying to find a way to wash my clothes, replace my ruined items and line up doctors appointments to address the severity of the setback.

It was one step forward and three giant leaps back for weeks.

The brain fog became so bad that I couldn’t even manage a short 140 character post, and losing my ability to write was heartbreaking.

Writing keeps me going. It gives me a reason to get out of bed each morning. It gives me a purpose. It gives me connection and community. My illnesses have taken so much from me but until now, they had never taken my ability to write.

Photo by Brett Jordan on Unsplash

Image Description: A photo of brown scrabble pieces spell the phrase ‘ASK FOR HELP’

What If This Flare Never Ends?

That’s when the ‘what ifs’ set in. The fear that this was going to be my new normal started to encompass every waking moment. I found myself sobbing because I was utterly convinced I had lost my ability to write for good.

I was sure that this was my new ‘normal’, and that it wasn’t a life I was willing or able to accept for myself.

We’ve all been there. The ‘what ifs’ are a natural response to a severe setback. We’ve all lost our baseline and had to cope with the fear that it wasn’t going to come back.

That fear is not helpful. It’s draining. The ‘what ifs’ steal our energy and don’t help us heal any faster.

The sad reality is that life with chronic illness is wildly unpredictable. You can never know when a flare will happen, how long it will last or how severe it’ll be.

You can plan for them, you can prepare and build contingencies, but at the end of the day your body is in control.

You can’t push through it. You can’t play through the pain. You can’t ‘try harder’ and force the flare to end sooner than it would otherwise.

It has its own timetable, and the best thing you can do is take a deep breath, lean in and accept it. You can stop fighting the inevitable.

I don’t know exactly when I reached the point. I honestly don’t even know how I got there. But eventually I stopped resisting and gave into the flare.

I finally got to a point of acceptance. I dropped the what ifs. I stopped trying to write. I stopped checking my bank balance and panicking about how I was going to pay for everything. I stopped berating myself for not recognizing the issue with the washing machine sooner. I stopped wondering what I would do if this flare become my new baseline.

I stopped everything and I rested.

That’s what my body needed to heal.

It wasn’t easy. Resting when everything is falling apart around you is a herculean task. But it’s a necessary one.

We must find ways to stop spinning and quiet our minds. We must remember that no amount of stressing or planning will change what’s going to happen to our bodies.

If the flare was going to become my new baseline, worrying about it wasn’t going to change that. It would happen whether I worried or not and I would have to cross that bridge when I got there.

Recognizing this can be freeing and frustrating all at the same time.

Its freeing because it helps give us permission to stop the endless cycle of ‘what ifs’ and actually rest. It’s frustrating because no one likes giving up control. No one wants to face the reality that we can lose our baselines at any moment. We can become more disabled in an instant. We can lose function and not gain it back.

Unfortunately, that is reality. There are a great many things we can do to protect our baselines, but we can’t control everything. We can’t plan for every setback. We can’t change fate.

Sometimes things will happen that rob us of our baselines. Sometimes they will be permanent, but more often than not they won’t be.

If we learn to accept the setbacks when they occur and lean into rest, we increase the odds that we will come through the flare unscathed.

If we give ourselves permission to stop worrying and ride out the pain, we may actually find some peace and comfort.

How Can We Do This?

I wish I could give you a step by step guide to eliminating the ‘what ifs’ and giving in to radical rest.

I wish someone would give me a guide, because it’s not an easy thing to do.

Unfortunately no one can really tell us how to do it, it’s something we must figure out on our own.

I did write an article on radical rest where I shared some of the things that have worked well for me, you can read it below:

It's Time to Throw Away the 'Coulda, Woulda, Shouldas' and Practice Radical Rest

The best advice I can give is to be kind with yourself. Treat yourself the way you would treat a friend or loved one who’s struggling.

All too often we are much harder on ourselves than we are on others. We cling to the need to control everything, and the harder we cling the worse we get.

Let go. Breathe deep. Remember that absolutely nothing in this world is permanent. Not the good days and not the bad days. Suffering ends. Pain ends. Pleasure ends. Every moment is fleeting and nothing will last forever.

It’s funny, but I find we remember the bad days more than we remember the good ones. We ruminate on our flares more than our successes. Personally I’ve noticed that when I have a bad day I automatically worry it’s going to last forever. When I have a good day? I never worry it will last forever.

I never ruminate on the positives, only the negatives. It’s hard for me to admit that, but I’m hoping it helps others as I bet many of you are the same way.

When was the last time you had a relatively good day and thought “I wonder if this will be my new normal?”

When was the last time you had a flare up and worried it would be your new normal?

Human nature is such that we worry about the bad things and tend not to focus on the good… so I’m challenging all of us to focus on the good things. Try and remember that good days will come again. That there will be times where the suffering eases. That things will ebb and flow as they always have and the bad days will not last forever.

Even if your flare is permanent, even if your baseline is forever changed, I promise there will still be moments of light.

There will still be joy. There will still be good days. There will still be reasons to smile.

They may become harder to find, but they will still be there.

Hold on to that. Always.

And if someone in your life is struggling through a lengthy flare like I was? Offer to hold on to hope for them too. Remind them that someone has their back. That they are loved and cherished and that better days will come.

What kinds of contingencies do you have? What items are things you can’t live without? How do you hang on when you’re in the midst of a terrible flare?

Share your stories in the comments and we can brain storm ways to avoid catastrophe together!