How to Survive ‘Chronic Illness Catastrophe Days’

OK, so the title probably sounds a little more dramatic than where I’m going with this… but maybe not!

My regular readers will know I generally have a positive outlook on life, despite my disabling pain and bone disease.

I have accepted my circumstances, I love the things I can do and I don’t stress about the things that are beyond my reach. My disclaimer to this comment is, “on most days.”

There is always an exception in every situation.

Every now and then, I wake up to a “chronic illness catastrophe day.”

On those days, it’s a struggle to keep my head above water. I hate them as they are so hard to manage, no matter how much faith, hope or strength of character you may have. These are days that happen to all of us with chronic illness and I’m on a quest to work out how best to manage them once and for all.

So, what’s a chronic illness catastrophe day?

These are the days when everything comes crashing in on me — days when pain levels are so extreme that I want to escape my body. On these days, I visualize having a zip opening to let me crawl out from my skin and just have a few hours of relief — away from pain, away from extreme fatigue.

These are the days when breathing hurts as fatigue overwhelms. These are the days when, despite my normal positive outlook, my mind wants to grab onto less than helpful thoughts. Thoughts of “I can’t,” rather than “I can,” constantly shout at me.

These are the days when well-meaning comments from loved ones and friends are misconstrued as I listen to them. My fault, not theirs. On these days, even words of support offer empty comfort. The pain is just too overwhelming and constant to hear or feel anything but thunderous throbbing.

How do we find a way through the catastrophe cloud?

I think, to a large degree, we need to go with the flow on these “chronic illness catastrophe days.”

The issue is, left to their own devices, these days can quickly turn into a week, a fortnight, a month and before you know it, depression has taken hold.

I’ve found a two-day recovery plan is a good starting point for getting back on track. It’s also designed as a plan that can be recycled as needed.

So, let’s assume this is day one of what could potentially be a “chronic illness catastrophe cycle.”

This is the hardest day to cope with, but it’s integral to make a start on a plan to fight back on day one.

Day One: The Catastrophe Day

1. Stop fighting.

I’m aware that sounds contradictory when we are talking about a plan to fight back, but I tend to fight against these days and push my body. That’s not what my body needs. It’s generally screaming to try to make me stop and listen. It needs rest — complete rest — and I need to surrender to it.

2. Rest and retreat.

When we stop fighting, our minds calm a little and sanity begins to return. Rest and retreat means to stop, lie down, sleep if you can or just do something that helps provide a focus outside of your body. For me, it means lying on the bed and writing or watching a relaxing TV show. Sometimes it means no noise at all. TV off, music off and just deep breathing in a quiet, comfortable setting.

3. Test the waters.

After you’ve retreated for a couple of hours, it’s time to test the waters. Imagine dipping your toe in the ocean to see if the temperature is comfortable. This is the same concept. If you don’t want to end up in a “chronic illness catastrophe cycle,” day one needs to have a bit of movement. Slowly get up from your bed or chair, or from wherever you had retreated to and just see how you feel. If everything seems overwhelming again, return to your retreat position and try again in an hour. Once you feel a little stronger from your retreat session, it’s time to move to the next stage.

4. Reconnect.

When having a chronic illness catastrophe day, it’s hard enough to connect with ourselves, let alone others; so, be careful in this stage. You’re probably feeling vulnerable and grumpy and contact with others could quickly turn into a less than positive experience. My biggest tip here is… make a coffee, tea or your drink of choice, then quietly sit and sip it while you think about reconnecting with the world. Once you are feeling a little more settled, check in on your favorite Facebook support group, text a special friend to say hi, or if you have family at home, engage in some light conversation. No big decisions or discussions should take place on these days.

5. Rest and retreat again.

Well done! You’ve made wonderful progress with reconnecting. These are difficult days and not ones to ignore and push through, so it’s time to rest and retreat again… until tomorrow!

Day Two: The Recovery Day

Day two is an important day. You will likely wake up feeling a little better than the day before, but also tired and vulnerable. It’s a day you need to move through very slowly and carefully.

1. Start slowly.

You don’t want to undo the great work you did yesterday. You need a slow start. No rushing out of bed!

2. Have a “no agenda” day.

Day two needs to be agenda-free. The whole aim of this day is to keep your stress levels low as this helps manage pain. You need to move through the day doing things that help you stay relaxed while spending more time upright than in bed. Lingering in bed for too many days in a row can affect your mental health and exacerbate physical pain. Getting up on day two is important to help the recovery process. Remember: yesterday was the chronic illness catastrophe day; today is the recovery day.

3. Self-care.

If ever there was a day to indulge in a little self-care, this is it. Whatever works for you within your limitations, do that. Sit in the sun and get some fresh air. Have a hot shower and feel the water working on your inflamed body. Make a special lunch treat or have Uber Eats deliver your favorite food. Whatever you do, today is not the day to do chores around the home or household admin tasks. If possible, don’t even make phone calls that are medically related. Today is about recovering from the chronic illness catastrophe day.

4. Rest and retreat again.

Day two needs to be a short day. You’ve done so well to get up, move a little and engage in some self-care activities. You’ll still be dealing with many symptoms and issues from your chronic illness catastrophe day, so you can’t risk overdoing things. An early night resting in bed, indulging in watching a DVD or favorite show, is a must.

The morning after a chronic illness catastrophe crisis is a little like getting over a hangover — not that I’d know anything about that, of course! Day three will feel like the morning after a big day out. You need to still be kind to yourself but it is important to start reconnecting and re-engaging with the wider world.

If your catastrophe day is lingering because of your pain and symptoms, day three is a good time to review your mental and physical health situation. Ask yourself some basic questions:

Do you need to see your doctor?

Do you have new symptoms?

Do you think you can push through the day and see how you go?

Are you feeling depressed?

If you answered “yes” to any of these questions, day three is action day. Make an appointment to see your doctor or counselor. Don’t let the issue linger. Taking action will help you to feel more in control and that alone will help start you on the road to recovery.

Hopefully, for most of us, a chronic illness catastrophe day is just that — one day with a second day to recover. Don’t try to push through these days. If we do, we may ultimately end up in a worse state.

If your body is screaming, it’s doing so for a reason. It needs help and you are the first point of call to help it. Please listen and respond with love and care.

I hope your chronic illness catastrophe days are few and far between. When they do come, I hope you will know you are not alone and they will eventually pass with a bit of careful management.