Turning down invitations

I understand. I get these episodes where just walking around my house makes my feet hurt. I want almost a full year with such mild symptoms that I really thought I was past this and then boom…they are back worse than ever. Tingling in my feet, lower legs, fingertips, severe hot flashes, dizziness, brain fog, night sweats. Going to follow up with my Covid Recovery Clinic doctor. This is so scary. All this on top of trying to deal with keeping Crohn’s in remission is mentally exhausting. Have tried every supplement recommendation out there for long Covid. Nothing seems to work.

@essiee , I appreciate that input. I do understand that the LC symptoms can be severe and resistant to treatment. And, that they may not be due to depression. I was just wondering if anyone had treated it that way, nonetheless. Sort of like treating the symptoms instead of the cause. And, that because there doesn’t seem to be any known treatment for LC. At least my doctors don’t know of any…..yet.

thanks for your kind words. I'm such a good forgetter. I forget to rein myself in on days I feel good and the cycle continues. I especially forget to keep quiet the day after a crash-I feel better and want to make up what I didn't accomplish the day before.
I find this site so supportive...even isolated, I am not alone

This site is life support for me. When I feel the worst (yesterday) I find compassion here. Thank you

Hi. I'm very sorry to read about your suffering. I too stepped away from my career, which has caused significant emotional & financial strain. I'm 2 years & 3 months into this. To my deep distress, I've lost almost all my local "friends" because, perhaps, my chronic illness makes THEM uncomfortable. It's devastating not to be heard or believed by "loved ones." It's devastating to be bed-bound for weeks on end, to see it rain, then be sunny, and be too tired to even open the door. My advice, because it's also what I'm doing, is to connect and/or reconnect with your "tribe." People you've known for decades, the ones who really know & love YOU: they can be your genuine/real support. They knew the vital powerhouse you used to be, and hopefully soon, you will be again. Video calls can help feel less isolated too, as long as you know ahead of time that seeing yourself on the screen can be ego-challenging for yourself & potentially shocking to them. I will add you to my nightly prayers and wish you all the best.

@jeindc and all here who truly understand - blessings everyone!

LC since 9/2020
Career bookkeeper for others and our self-employment business(es) for the past 42 years.
Granted Federal Disability, SSDI, for LC 1/2025
Besides my husband being and remaining! my BFF, my recliner is my comfort companion.

Here is my 10/2024 resignation from everything “church” that followed our 6/2024 closing of our 25+ years e-commerce business:

••••••••••

October 13, 2024
RE: Message of Resignation from my Commission
JRG, Commissioned Pastor
Church of the Redeemer

I've been feeling the Lord's tug for quite a while now and praying for clearer direction.
As always, God's timing is perfectly precise. In my scripture reading, I came across this passage that told me I was hearing correctly. It may not be necessarily in scriptural context, but the words jumped off the page ..

Isaiah 30:20-21 NASB
“[20...] He, your Teacher will no longer hide Himself, but your eyes will behold your Teacher. [21] Your ears will hear a word behind you, “This is the way, walk in it, whenever you turn to the right or to the left.”

I've come to a point of realization with Long COVID (over four years now) that this isn't quickly going away and may never. So, I had to make some big decisions about life with these limitations. These decisions were not made easily. Even what little I do has become overwhelming, so life requires me to restructure things so I can use my limited energy and mental health toward the truly important priorities.

Stress is added to the mix with deep concerns for my oldest; my youngest granddaughter with a [currently untreatable] rare form of Cystic Fibrosis; and my mom at the end of (this) life [Mom died 4/2025]. As my Speech Therapist taught me, I need to, “count my spoons” (my available energy) and put them to the best use.

When I saw the annual review of my pastoral commission come in and couldn't answer any of the questions very positively, I knew God was tugging harder... When I went through the schooling for pastoral commissioning, I thought the end goal was to be a ministry partner with [my pastor, D]. Since Covid, and then when D left, I've been kind of lost. Not really knowing my place, and because of Long Covid, not able to do much well anyway. So, I've decided to resign my pastoral commission and give up all my responsibilities with Redeemer. Treasurer, Session, Weekly Faith Column for the newspaper, bulletins, music, sermon Powerpoint edits. If there is anything else, that too. Everything.

I know it's hard to understand the scope of my illness because you and everyone else sees me at my best. What you don't see are the days of fatigue and rest leading up to you seeing me at my best for a couple hours on Sunday, and maybe a couple of hours during the week.

Although many are much improved, I still experience, to some degree, all the same symptoms I've had from the first [Onset 9/11/2020].

The most currently debilitating being Brain Fog and Imbalance from dizziness. For which I was granted Disability.

While under the influence of living in the Brain Fog Forest, I’ve…
• When travel was delayed for construction or other reasons, driven through towns I was sure I already had.
• Something never done before LC, driven off with the gas nozzle still in my tank. Not just once but multiple times over the past 5 years.
• Also never done before LC, toasted air because I forgot to put the bread in the toaster first.
• Regularly taken 2-3 hours to cognitively read through articles. Months to read a novel. When done, quickly forgotten the title or substance.
• Shipped out merchandise worth $3-5K to customers without processing their payment. Have had to resort to legal channels to collect.
• Discovered I failed to pay property tax for an entire year. (Remember, career bookkeeper.)
• The list goes on…

The worst part is in the moment I truly believe I’m doing [the task] accurately and timely, just find out later I'd bumbled badly.

“Write things down”, people suggest. The problem is, in the time it takes to find a pencil and paper, get to a Notes App on my iPad, etc., the thought is long gone. Seconds from thought in and thought gone.

In general, thinking, much less doing, is exhausting.

Even though my mind and body are disabled, through it all, I have been able to honestly say all is well with my soul. With all that said, throughout my life I have watched God’s hand move me around this country in and for his timing and purpose. I have always noticed the biggest enrichment in life, no matter where I was or what I was doing, has been the people who have crossed my path. Be sure you all are included in that number.

Scripture tells us, blessed is the one who trusts in the Lord, and whose trust is the Lord. I don’t know what is ahead. I certainly didn’t see Long Covid coming. But I do know whom I am following. Nothing has ended, it’s only changing. We will figure out those changes together. Scripture tells us God is doing something new. Something new is something we’ve never seen, heard, or done before. So, let’s be excited for what is coming. Ultimately, God in Christ is our victory.
••••••••••

See if you doctor will let you try Low Dose Naltrexone (LDN). I am 5 long years into Long COVID and, though things have improved, I was spending most of the day pacing my use of the minimal energy I had and lying down due to extreme fatigue. I started LDN in February and slowly titrated up to 4 mg per day. It has flushed most of the inflammation out of my body so my pain has gone from a 6-7 a day to a 2-3 out of 10. My skin started clearing up about three months into treatment and my energy got a boost about month two. Now after 8 months of treatment, I only have to lie down about 3 hours a day...and, though I still have to pace myself, I can walk 1/2 a mile a day, go out to coffee or lunch with friends...and wash my hair without using up all of my energy for the day.

Initially, the 1.5 mg dose made me super sleepy so I took it at night. After about two week, it gave me insomnia so I now take the LDN in the morning. It did give me quite trippy dreams that were quite vivid but not scarry. No other side effects for me.

I’m so sorry you’re suffering and I get it! I also have Long Covid. I also suffer from Hypothyroidism and Hashimoto’s. The reason I mention Hypothyroidism is because it can make you extremely tired. I was diagnosed with both and am now taking Synthroid to control the Hypothyroidism. Before my diagnosis, I was extremely tired and would fall asleep after dinner on the couch, which is totally not me. I was dragging during the day and didn’t have much energy. My daughter suggested I have a Thyroid Panel done and to my doctor’s surprise, I was diagnosed with Hashimoto’s and Hypothyroidism. I began taking a higher dosing of the Synthroid and another drug called Cytomel. As my Thyroid numbers came down, my doctor gave me less medication and now I only take Synthroid 75 mcg. You never know, this could be why you’re so fatigued. I wish you well on your health journey.

JE, I share your sentiments. My LC symptoms aren't as bad as yours, but I've had to have several difficult conversations with friends and family that sometimes I just CAN'T do X, Y or Z. Those who are close to me and care for me seem to understand, although even my own daughter was pushing me for not "doing enough". Until we have an effective treatment, LC is a chronic disease and you need to tell people that you have real, significant limitations. I too retired (only a few months earlier than I would have otherwise) and I've had to set clear boundaries. If these people care about you, they will understand; if they refuse to accept your terms, then they are either pushed off the friendship shelf, OR you have to be stern/firm with them. It's hard, and I am sending you waves of strength and recovery, however small. Hugs.

@vostie Its always good to hear LDN success stories. I’ve been on it for 10 years for ME/CFS, arthritis, fibromyalgia, and severe axonal Polyneuropathy. It’s the only thing I need for pain apart from an occasional Alieve when I have a bad flare. I’ve only tried going off twice and both times the pain returned. LDN helps inflammation and with mood too.
I’m convinced it’s a wonder drug for some of us.. I’m quite disabled from all my conditions (housebound and using a motorized chair to go out places), but honestly, I’m not suffering with horrible pain and believe LDN is why.