Advice on dealing with difficult periods

[Mary T.]

Hello - I have had dysautonomia and other issues as a result of long COVID for the past two years.  I am still in the process of figuring out with my doctors how to manage it, so I've had my ups and downs.  For the past few months my symptoms have worsened significantly.  I can't work at a job that I really care about and I have had to step back from the organizations that I volunteer for.  I went from being very lucky to be busy doing things I love to basically having to stay in bed for most of the day.

Even typing this post is physically difficult but I was encouraged to reach out to others who may have had similar experiences.  Basically, I keep thinking that if I was a stronger person and just tried harder, I would be able to give 100% again.  It has been hard to accept this somewhat abrupt pause in my life.  Any advice on how to get through this period would be very much appreciated.  Thank you.

[MTRJ75]

I'm sure someone who handles things better than I will chime in at some point, but please acknowledge that we almost all have felt this way at one time or another and sometimes intermittently when things flare up because it can be like a roller coaster ride sometimes. I learned early on that it's not a barrel through it condition, as much as my family and friends wanted to convince me to just "be stronger". In this case, that seems to have the opposite effect. 

Arriving here is a good start. Go through some past posts. Use keyword searches for some of your worst symptoms to start. Also check out past posts on the Health Rising blog, where I get a ton of great information from. Unfortunately, there is not single, simple answer. Even the things that help people aren't always the same. 

[Pistol]

7 hours ago, MTRJ75 said:

I learned early on that it's not a barrel through it condition, as much as my family and friends wanted to convince me to just "be stronger". In this case, that seems to have the opposite effect. 

Yes, very true. Being very stubborn, in the beginning of this illness I told myself that I should not let it get me down and "barreled" through it. Avoiding to effectively deal with my symptoms, ignoring my limitations and pushing myself inevitably worsened my condition. The best advice I have now is to learn to listen to our body - that is the only way I can manage living a good life despite POTS.

[MomtoGiuliana]

So agree with what the others have said.  Part of the problem is that our society highly values productivity.  Another problem is that this illness is not always recognized by the medical establishment including how severely disabling it can be.  I know when I have had flare ups and especially before I was diagnosed correctly, I thought also it was a matter of will and that I wasn't mentally strong enough, or if I just were not so "lazy" and pushed myself more and exercised more I would feel better.  

In my experience when I am in a flare up the things that help are more fluids, salt, IV fluids, increase in beta blocker dosage, avoiding lying down too much during the day, moving around a little (as much as I can tolerate), small meals, more protein, less carbs.  

It's very hard.  Hope you start to feel better soon.

[Mary T.]

Thank you all for the advice.  I'm glad that I found this group.  It's one thing to know in the abstract that there are other people going through similar difficulties, but another to actually join and participate in that community.  I wish I had joined sooner!

[MikeO]

40 minutes ago, Mary T. said:

Thank you all for the advice.  I'm glad that I found this group.  It's one thing to know in the abstract that there are other people going through similar difficulties, but another to actually join and participate in that community.  I wish I had joined sooner!

you are in good hands. one step at a time.

[Sarah Tee]

@Mary T., I’m so sorry to hear you are dealing with all this, but I’m very glad to welcome you here. This site has so much information, and the people here are great.

Attempting to “push through” symptoms can backfire in some medical conditions. Actually, probably in a lot! Sure, there are some circumstances in which pushing through is necessary and supported by good evidence. Like getting up and moving about as soon as you can after surgery, even though you really don’t feel like it.

But we need to be careful not to make things worse.

I think we’ve all been through difficult periods. I get sad, angry and resentful sometimes. I have a good cry, and rail at the universe. Then somehow I manage to pick myself up and keep going.

Being stuck in bed or even lying on the couch can be so boring. Healthy people sometimes think we might be reading or knitting or writing a novel, but often you can’t even concentrate to do anything.

[Pistol]

4 hours ago, Sarah Tee said:

I think we’ve all been through difficult periods. I get sad, angry and resentful sometimes. I have a good cry, and rail at the universe. Then somehow I manage to pick myself up and keep going.

Same here. In the beginning, when I had to face the fact that I am disabled and unable to work I became very depressed. I still sulk in self-pity some days. But throughout the years I learned to deal with these feelings and remind myself of all the things I CAN do, and I am good at. When I see people just standing in line or talking to each other on the street I often think: "Do they even appreciate the ability to stand around like that?" Then I see people that are in a wheel chair or on oxygen or otherwise disabled and I take a good look at myself and say:"They probably think if I appreciate that I can walk around ( even if just for a bit ) and breathe my own air and use the bathroom by myself." 

To me it has proven extremely therapeutic to embrace my limitations and enjoy what I can do instead of regretting what I have lost.