What To Do When Your Chronic Illness Is Suffocating You

Basically all 2019 was a slow decline of my health. I have no idea what it was from, and with POTs, there really doesn’t have to be a reason.

I was trying to plug along anyways and thankfully rallied enough to go on an awesome trip to Salt Lake City, Utah for the dōTERRA conference. That was like the highlight of my year!

Then I got back in October and I absolutely just tanked. Bed rest for months, tachy like you wouldn’t believe, and little to no energy.

I initially thought it was just a regular crash. It’s not fun, but it lasts for a few weeks and then you start to recover. You don’t get to recover back to normalcy, but back to what you know is normal.

But this was no crash. It wouldn’t go away. It wouldn’t get better. Everytime I have a crash (which is usually pretty often), I have this fear that it won’t get better and I’ll be stuck like that. It’s usually just a passing feeling of anxiousness, and then I remember that I am more likely then not to recover from it and to just hang in there. To let it run its course.

But this time I was living out that fear. 2 weeks, then a month, then Halloween, Thanksgiving, Christmas, and New Year’s. I wasn’t recovering from this.

Once you start to realize that, that this is your new normal, your new starting place, you start to panic. The disbelief is wearing off and it sinks in that you have lost even more and you didn’t even think that was possible.

All you ever want when you are chronically ill is to just feel better and it’s absolutely crushing to get even worse.

On top of coming to this stark, crushing reality, you are also dealing with taking care of your health itself.

You still have to eat. You still have to shower. You still have to do laundry. You still have to stay hydrated. And some people even have to still go to work or school (though I honestly have no idea how).

And those are only the things you HAVE to do. Anything extra just completely flies out the window and is cancelled.

You go into power saving mode. You don’t want to throw away things like socializing, but it’s just simply too much energy. 100% not a priority. Your only priority is literally just surviving.

To live like this is suffocating. To not know when or if you will gain any health back at all is suffocating. You somehow live just day to day, minute to minute. It’s so slow and sometimes just crushing.

If you have been here before, friend, know that it does get better. Even if your health doesn’t, your outlook can. It is possible to release that gripping, that crushing, that suffocating.

Things do get better, sometimes it just takes time. That’s the hardest thing to hear especially when you feel like waiting is all you do, but there are things you can do in the meantime.

1. Revisit Your Doctors

So the first thing that I did when I realized that I wasn’t getting out of this was to ask around for a new cardiologist.

I knew that mine wasn’t going to be helpful because he had become much too passive. Don’t ever be afraid to kick your doctor to the curb and see a new one.

I went to a few different people that were connected in the medical field with doctor’s in my area, and asked if they knew anyone good. I got two recommendations for the same doctor, so I decided to give him a go.

When you call the office for the first time, ask specifically if they treat your chronic illness before you even make the appointment. If not, there is no point in going to that first appointment just to find out that you know much more about your illness then the doctor does.

So either call a supportive doctor and let them know you aren’t recovering, or find a new one. When you don’t recover, it’s time to try some new treatments. Make your doctor’s work for you.

The best way to get rid of that suffocating feeling is to get some progress going.

2. Reach Out To Your Chronic Illness Friends

I know a lot of people like to take breaks from social media when things are rough, but to me that says they haven’t made that space healthy for themselves.

I absolutely love my social media circle on Instagram of all my Spoonie Friends. I have met so many friends through there. It’s a great way to show each other that we get it, that you aren’t alone.

Obviously you never want to see anyone else go through this, but it’s comforting when you can relate to how someone is feeling.

I know that communication isn’t at the top of your priorities when you get so sick, but do it as often as you can possibly muster.

You are always welcome in my inbox!

3. Rose And Cheer Essential Oils

These two oils have been extremely comforting to me emotionally these past months. Rose is a high frequency essential oil, so it really helps raise your emotions up. Cheer is a blend of different essential oils meant to support your emotions when they are oppressive or negative.

Using pure essential oils aromatically to support your emotions can really help soothe and uplift, especially when you feel suffocated.

They work the best when it’s consistent use, but it still can even have an immediate reaction.

Think about when people are put under for surgery. Just by breathing in the gas for a minute or two, you can drift right off. I’m not saying that essential oils will do specifically that, but I’m pointing out that smells can do powerful things to your body and emotions.

I put Rose on my chest and wrists, then layer Cheer right over the top.

4. Vitamins

If you aren’t already, talk to you doctor about what vitamins you could possibly start taking to help even a little bit with energy and mood. These may not bring you back to health, but any little help you can get, take it!

I use Vitamin D, Magnesium, CoQ10, B12, and dōTERRA’S Lifelong Vitality supplements that have a Multivitamin, Omegas, and Cellular Support. I was actually surprised to hear that my new cardiologist’s office has heard of them from other patients as well!

5. Netflix

When you are so desperately sick, you spend a lot of time in bed, literally incapable of doing anything physically. Most of the time the brain fog is too terrible to even read, so Netflix is my go to. It’s a huge Netflix and Pills situation!

Some of my favorite things to binge on when I just can’t do much or just can’t even focus much either are:

  • The Office
  • Parks and Recs
  • Friends (although that’s not on Netflix anymore)
  • The Blacklist

I wish people understood how boring this actually is, but you just do whatever you can to get through things. Find what works for you!

6. Cling to your faith

This is not as easy as it sounds. When everything is so crushing and you just can’t even begin to understand what you are going through or why, it’s really easy to just let this slip off.

But ask those hard questions, seek for ultimate truth. Because honestly, the belief that it’s all for a bigger purpose alone is enough to soothe that suffocating feeling even a little.

I have found a lot of comfort in these small things that help relieve the pressure even just a little. Sometimes that’s all you need is just a little though, because you just have to keep going. Things will get better, and sometimes it takes time. So use these tips while you wait.