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We are Covid Long Haulers

I’m sharing our story so other people who have had Covid or have family member or friends who had are aware of how bad it really is.

Chris and I are officially long-haulers after having Covid .   We caught COVID when we evacuated for the wildfires.  It really hit on October 10th and while we’re a little better now, the long term effects are horrible.  We spent an hour on Sunday responding to a survey for the University College of London’s long-hauler study, the biggest one yet undertaken anywhere in the world.

Here’s what life is like in our house…

We sleep sitting up in our recliners so we can breathe.

We take pills round the clock, setting an alarm because forgetting them makes us miserable. 

The house is a mess because we don’t have the energy to do even a little cleaning.  We do what we can, when we can, but the fur bunnies are overtaking us.

We order in our dinner meals because we don’t have the strength to stand and cook.  That’s a real issue in a little town like ours because we’re limited to fast food.  We’re longing for something fresh and real.

We get all our groceries delivered, but just getting them in from the garage and putting them away is a whole day job.  Between the exhaustion, wheezing and weak muscles, it’s a real effort.

Chris really struggles with getting the trash out on the curb every Monday.  The trash and recycling bins are still out there because she don’t have the energy to bring them back in.

Any activity that involves bending over, like doing the laundry or cleaning the cat litter, takes planning because of what it does to our breathing.

We haven’t had a shower since this hit because it takes way too much energy to get undressed, sit in the shower, dry off and get dressed again.  We wash our hair in the laundry room sink and do sponge baths. 

We haven’t picked up our snail mail for weeks now because it requires a walk to the car, driving half a block to the mailbox and walking back in from the car.

That’s just a little of what it’s like living with the long term effects of COVID.  It has diminished our lives beyond anything we could dream of.  There is no cure, no idea of when this will get better.  We’re past the huge exhaustion, the hair falling out, the mental confusion and fun stuff like that.  But the lungs take a beating with this and they don’t spring back.

Johns Hopkins has recommendations for mild breathing exercises, things you would laugh at for their simplicity but that are difficult for us.  They also recommend lots of fluids and rest.  Lots of rest.  Restricting physical activity, no exercise.  If you start feeling better and walk just a little more than normal (like 10 feet more) it can throw you back days in your recovery. 

Long term prognosis?  There is none.  There are too many unknowns. 

Here is a video on Long Haulers. A co-worker of Chris sent it out, because one of her co-workers friends is in it. Chris and I will watch it today after she gets off work.

I’ve gathered a list of challenges and their hosts.  So if you know a challenge host, please direct them to my blog.  Feel free to contact me anytime.  I hope everyone will be able to use my lists.

Qi (energy) hugs

Cee

164 replies »

  1. So sorry to hear you’re both still struggling with this, having Covid has certainly been an experience for me – however ‘minimal’ my symptoms may be compared to some people they’re certainly not in any hurry to dissipate. Currently on week 4 and thankfully I have to say finally I’m starting to feel some real improvement in my breathing, so that feels good. Take care of yourselves as best you can, sending lots of virtual hugs across the ocean to both of you ❤

    Liked by 2 people

  2. I feel so sad for you both. How absolutely HORRIBLE. I do hope science can provide the answers and you start to gain strength and vitality. I only wish I could help in some way. Much love! (from the UK) xx

    Liked by 1 person

    • Just being able to talk about our story helps. Covid isolates all of us and knowing other people out there are going through the same thing or know what I’m going through helps a lot.

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  3. I’m so sorry to hear about this, Cee. Covid has hit people so hard. I’ve been lucky that my symptoms were mild but I fear the new variant. I’m too young to get the vaccine. I hope you can get some help. Praying for you and Chris 🙏

    Liked by 1 person

  4. So sorry to hear of your ongoing struggle with Covid. I hope they come up with some better understanding and solutions to this sooner than later. Even with vaccines, with new variants and ongoing side effects, one wonders when this will end. Hang tight….sending hugs and encouragement your way.

    Liked by 1 person

  5. I know exactly how you feel. Been there, lived through it. I call myself a covid survivor. It took me msny months to recuperate, but hang in there, you will get better. Just don’t stop trying to exercise. And lie on your stomach when doing breathing exercises.

    Liked by 1 person

  6. I am so sorry to hear that this is still affecting you guys, especially since the way you caught it was beyond your ability to avoid. I hope you both recover soon, and I’ll keep you both in our thoughts and prayers.

    Liked by 1 person

  7. I’m so sorry to hear you and Chris are struggling with long Covid Cee. Make sure you get plenty of ventilation in your home and it might be an idea to get your home professionally cleaned and de-fogged with sanitizer. If you haven’t got the energy to clean, the Covid will stay on all the surfaces and you continue to breathe it in and reinfect yourselves. Sending love and hugs and hope you can get some help with your chores and cleaning 💞💜💞

    Liked by 1 person

    • We got terrific air cleaners in our house. We just don’t want to have anyone in our house, I don’t want to bring Covid in from the outside. We have talked about it. Something to keep in mind though.

      Liked by 1 person

  8. I’m so sorry it has gone on like this for you. It’s why I don’t go anywhere. In theory, as of today, G & I can get vaccinated, but there are no vaccines to get.

    I’m breathing for you and with you. I wish here was more I could do. I wish there was more I could do for everyone who is suffering.

    Meanwhile, they are rioting in Holland because they don’t want to wear masks. Garry asked me (again) — “What is WRONG with those people?” Staying inside is hard, but the perils of going out are so much worse.

    Liked by 1 person

    • We have stayed home since we knew we had covid. Actually we have stayed home except for our trip to Idaho and there are so many places we had to stop. Idaho, then, people rarely wore masks or paid any attention to Covid guidelines.

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  9. I’m sorry to hear this Cee, although the shower part scared me a little. Even though its been a year new treatments are coming out all the time. Hopefully you’ll both feel better in the near future. The body has an amazing capacity to heal itself.
    Take good care of yourselves. 🤍

    Liked by 1 person

  10. Thank you so much for sharing this. I had no idea what it was like. I fervently hope you recover soon but are gentle with yourself in the process. It wasn’t all that long ago that you were making progress with the leg strapping and such, which took a lot out of you. You’re quite remarkable.

    Liked by 1 person

    • I still have to keep my legs strapped, but I’m only doing my calves. I can’t stand being more immobile than Covid makes me. Covid also has edema so I feel like I’m being hit by both ends. But even with all that, I’m still getting a little stronger all the time. 😀

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  11. I am so sorry to hear this. I suffer from M.E. (Myalgic Encephalomyelitis) which I see is be connected with post Covid . Your symptoms sound very familiar. ME is thought to be viral related. I got it after a respiratory illness that just didn’t seem to want to go away. The advice you are getting is correct. Please take care.

    Liked by 2 people

      • I can see how you might have thought it was the smoke. I thought my asthma had just got out of control until tests proved otherwise. Not being able to breathe is hard. I will say that over time, with rest, I’ve learned to pace and have gained some strength. Rest is key.

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          • Cee,I am so sorry. We, too, had Covid in early Oct. We are mostly better, some breathing issues, some fatigue, Bruce developed a blood clot and is now on blood thinners. Nothing as bad as you though.

            You need to ask for help. A neighbor would gladly bring your mail to your front door. Others would easily share a meal, leaving soup or stew or salad on your porch. Neighbors did that for us. People want to help, they just need to know what you need. I don’t know where you live, but there is always a community around.

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    • I was thinking the same thing too…that the absolute complete exhaustion and memory loss remind me of the CFS (chronic fatigue) I ended up with after toxic mold exposure. It is like having the life ripped out from under you…and people do not understand how you can feel so sick when you appear fine physically on the outside. (It took 10 years of acupuncture, yoga, Qigong, natural remedies, and stress and time management to bring me back to life.)

      Of course, the added complications you have of difficult breathing must make this even scarier. I will honestly tell you that as soon as it hit last year I was very suspicious as the masks remind me too much of China, silencing and submission. I knew of no one who had the virus until about a month ago which I presume is the new version which is more transmissable. While I still do not support the vaccine, I isolate as much as possible (which isn’t great mentally, spiritually or physically actually) but I am in the high risk group.

      All said, after reading your experience I will be more diligent when doing out. More than anything I would not want to return to feeling so lifeless. My heart goes out to you for what you are enduring. I will hold you in positive light and love for healing. Warm wishes to you —

      Liked by 2 people

  12. I am so sorry that you have succumbed to this virus. Perhaps the forest fires made your lungs a little more susceptible. My lung surgeon, 51, died this year looking after his patients. Look after yourself and I hope you feel better soon.

    Liked by 1 person

  13. Oh, dear, Cee and Chris. I wish I lived closer so I could help with chores and shopping. Call a church. I’d suggest an ELCA Lutheran church, because they are the most helpful people I know. Tell them another ELCA Lutheran made the suggestion.

    Liked by 1 person

  14. The COVID-19 pandemic has certainly taken its toll on so many peoples’ lives. I’m very sorry to read about how the coronavirus has wreaked havoc on your life. We have a relative in Germany who continues to suffer from the after effects of the virus, he too complains of shortness of breath. May God grant you healing and a successful recovery.

    Liked by 1 person

    • I hope your relative heals up nicely and as quick as possible. I hope they are in a position to get plenty of rest. That is what seems to help us the most. Lots of rest and then a little activity.

      Like

  15. Gosh, Cee. I missed your earlier post, so I had no idea until now. As if you didn’t have enough to deal with! I have been reading that many people are suffering with various long Covid symptoms over here. It must be hard to have something that is so new and little understood. I hope with all my heart that you and Chris feel much better soon.

    Liked by 2 people

  16. What a chain of events for you two! Unbelievable that it’s still going on after all this time, Cee. Is it because your system is already weak due to Lyme’s Disease, do you think? Did Chris have health issues or asthma prior to this? I wish there were answers other than time! And I’m sure you do too! Sending hugs 🙂 🙂

    Liked by 1 person

    • We both are high risk. She had polio as a young child and her lungs are partially paralyzed and my lungs is my weakest spot, yes because of Lymes. Anyhow, that’s why we were so careful about keeping ourselves protected, except in Idaho. We wore masks when out, but that obviously wasn’t enough. No one in Idaho hardly ever wore masks, so I’m sure everything was covered in Covid. It’s just time. I’m just grateful we both survived fairly healthy overall. 😀

      Liked by 2 people

  17. 🙂 Dear Cee,
    I’m so sorry to hear that Chris and you are still struggling so badly with the aftermath of COVID.
    Thank you for the information and the extremely interesting video. All the people who believe COVID is a joke should be forced to watch it and to work in an IC-unit for some time!
    Get well soon and all the very best to both of you!
    Claudia xo 🙂

    Liked by 2 people

    • While I have many suspicions and concerns over the ccp/covid virus, I don’t think it is a joke. I do believe it’s real but I also believe it’s been heavily politicized, greatly misunderstood, and used as an opportunity for unethical purposes. Sadly, people like Cee and Chris have greatly suffered because of this.

      Liked by 2 people

  18. I have heard two long haulers interviewed on our national radio the CBC so I did have an idea of the sheer devastation that can be wrought by Covid .I am so sorry you are having to live like this. I wish I lived near to you and I would be over with a meal for you both. I shall pray for recovery for both of you.

    Liked by 3 people

  19. Heartbreaking to read what you and Chris have gone through… So sorry to hear that. I hope you both will recovery soon and pray for you. Do you use ventilator? A friend of mine said that her niece has to use it day and night.
    Sending (((hugs))). ❤

    Liked by 1 person

  20. So sorry you are going through all of this. Cee – it just sounds horrendous. I hope you both continue to improve and get 100% of your energy, physical abilities, and peace of mind back soon. The doubters out there need to tune in to the realities of this terrible pandemic. Take care, Karen

    Liked by 2 people

  21. I have 2 friends here also suffering the long term effects…they have now started with accupunture which they both say is helping them…they are medical doctors…who didn’t ever try before but they are noticing better breathing with their lungs and now increased energy…they have been living with this since early December…just wanted to share…stay well…sending you all good things 🤓💫 and a hugs hedy 🤗❣️

    Liked by 2 people

  22. Oh Cee, reading this makes me sad. Being somewhat active to none is not right. Aren’t there community groups who have volunteers who could help? Simple things like getting the bins in and out, collecting mail and a bit of housework? Being both high risk doesn’t help either. Sending lots of warm Aussie hugs to both of you (((hugs)))

    Liked by 1 person

  23. Cee–this breaks my heart. You and Chris took such care, and now this…. They don’t report much on the after effects of COVID, just the things needed to try to prevent it. I know you don’t want anyone inside the house (and with good reason!), but I wish there was some help for you. I hope you and Chris get to feeling better. Sending hugs and love to you both.

    Liked by 2 people

    • Oh Lois, I can feel your hugs and prayers. We did manage to get our mail yesterday, our mail box was stuffed to the limit. It felt good to get out of the house for a few minutes. 😀 😀

      Liked by 1 person

  24. Sorry to hear you are still struggling, Cee. It is a really cunning virus. But my positive messages are that 1) you should both have strong immunity for a good few months, and 2) there are new treatments emerging all the time. Hopefully there’ll be something to speed up your recovery. In the meantime, take care of yourselves. My thoughts are with you both.

    Liked by 1 person

    • Debbie, I know you know first hand how bad and cunning this virus is. My heart goes out to you and your loved ones. Chris and I are slowly getting better. Chris should be able to get her shots in a month or two. I’m younger, so who knows when I will be able to get mine. Hopefully while I’m still immune from this. 😀 😀

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  25. Oh Cee, thank you for sharing. I had no idea. We are aware of several people who got COVID and we know it can be devastating. I even lost a very dear friend to it. I will keep you both in my thoughts and prayers. Stay positive and hopeful. Sending hugs and prayers. 🤗🙏🏻

    Liked by 1 person

    • I’m so sorry you lost a dear friend to Covid. So many deaths have occurred and that alone is horrifying. I’m glad we are and will be survivor’s of it. Thanks for your hugs and prayers. 😀

      Liked by 1 person

  26. Thank you sharing your and Chris’s experience, Cee. Your post must have taken a lot of energy to compose but sometimes sharing helps lighten the mental load. It is no wonder you and other long-haul Covid survivors are so fatigued. Not being able to breathe properly is like running a car with a hole in the fuel tank. I’m exhausted thinking about how you even get through the day. I watched the video. It is absolutely heart breaking. I can imagine all those medications could have significant side effects in their own right. For example, cortisone increases insulin resistance and the risk of developing diabetes, or if diabetic already, making exceedingly difficult to maintain good blood glucose control. As a person with diabetes I wouldn’t want to take it if I could avoid it. What a diabolical Catch-22 situation.
    I was wondering if your doctor or your health centre might be able to identify some people that would be willing to prepare a few healthy meals for you each week? You could pay for that service since you are doing that anyway.
    What is the situation with the vaccine? Are long haulers given priority?
    Take care, Cee. Do not feel guilty about resting. When the sun comes out again, I recommend sitting outside on a nice comfy chair with your camera, and being part of the changing seasons.

    Liked by 1 person

    • We are fortunate that we are not on medications like those in the video. We are holding our own. I am a type I diabetic and for the most part my blood sugars have been good. I’ve had to take a little extra insulin, but only a couple units a meal. So that is wonderful.

      According to age Chris should be able to get her vaccine in a month or so. I’m that 5 years younger, so I don’t have a date yet.

      I wish it were warm out, I would love to sit outside and soak in the rays with my camera in hand. Something for me to hold on for the future. 😀 Thanks so much for writing. 😀

      Liked by 2 people

      • You’re welcome, Cee. You are doing fantastic to be able to keep your BGLs good. I know how challenging that can be. It is odd that you are not prioritised for the vaccine given your chronic health condition. A strange system. I guess every state is setting their own rules. All the best to you and Chris, Cee.

        Liked by 1 person

  27. I’m so sorry to hear that Covid is still impacting on your lives after so many months. I hope that things will start to improve for you soon. Can you get any help with things like picking up the mail, getting the bins in and so on?

    Liked by 1 person

    • We really don’t know our neighbors. In fact, no one right now is going outside much. It is so quiet around here it is kind of scary. We did get our mail yesterday, and it was all junk … a lot of it 😀

      Liked by 1 person

  28. OH my god. It’s been three months, and you still feel it?
    I’ve been having a fever since last night. It was fairly high last night, but has come down to 99 as I type this. I don’t have any other symptom, so am assuming it is just a regular seasonal viral, and not COVID. I hope.
    I hope you and Chris get better soon. I get so mad at the idiots who call COVID a hoax.

    Liked by 1 person

  29. Cee I am so sorry to hear you and Chris are having the long term effects from Covid. Is there anyone to reach out for help with the daily chores, to take the pressure off you and Chris? I hope by participating in the study you can get some answers and soon they will have more answers for you. Sending a hug to you both

    Liked by 1 person

  30. I’m so sorry to hear how you and Chris have been suffering all this time, Cee. How awful! I do hope that things will improve for you soon. Thank you so much for continuing to keep your blog running through all of this. I admire your spirit.

    Liked by 2 people

    • Hi Sue, my blog is partly why I keep going. When Covid first started, nearly a year ago now, I vowed to keep my blog running and uplifting to help us all through the isolation. I just had no idea the virus would impact me so hard. Thanks for hanging in here with me.

      Liked by 2 people

  31. Sorry to hear you have been so impacted by this horrible disease. Even sorrier for those who still deny that it is anything worse than the flu. Hopefully the long haul research will bear some relief to all who are suffering the long-term after effects. Wishing you and Chris all the best for a full recovery.

    Liked by 1 person

    • Thanks John for your heartfelt response. It’s been a long road to recovery and the best part is we are actually starting to see some daylight at the far end of the tunnel. That is so hopeful. 😀

      Liked by 1 person

  32. Cee, I am so sorry this has happened to both you and Chris. I am reading this in a week where our state Republicans are voting to do away with a state mask mandate and it makes me so angry. I know other people who have suffered long-term with Covid as you do,

    Liked by 1 person

    • Hopefully our new President will help stop some of the disbelief of covid and masks around your state and the country. How said. I hope those you know with long term covid recovery fully. 😀

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  33. Well, I meant to finish my comment, but fat fingers…

    I will end by saying I hope for everyone’s sake, the country and the world can get a grip on this virus and the long-term effects and bring relief to all in the form of vaccines and treatment. I hope you don’t mind if I say a prayer for you and Chris and extend my heartfelt wishes for your healing.

    Liked by 1 person

  34. My other Uncle and his wife both caught COVID in July 2020. They spent a month in quarantine at their home and strict themselves to big does of medicines, heavy but healthy diet and lots of rest.
    But even today, after so many months, both of them can’t perform routine tasks for longer duration and loves to just rest more and more.
    The list of those who lost their lives against COVID is very much high among my relatives, friends and coworkers. It is just so saddening and painful at the same time.
    I hope both you and Chris regain your positive energy soon 🙂

    Liked by 2 people

    • It is so sad that you have lost so many family members and friends to this dreaded virus. My hope is that you and your immediate family stay healthy. You Uncle and his wife, will recover, just give the time rest and time they need. For those of us who get the long term effects it is so hard to live with. Be patient with them, as I know you are. Thanks so much for writing. I’m sending you my love. Lets both keep our positive energies flowing.

      Liked by 2 people

  35. Thanks for sharing this video. It hits home…I wish more people would see it as it gives a much better understanding of what is involved physically. I feel like I’ve known Amanda from somewhere…

    It was also good to see their coping skills and that they’ve found some gratitude in this horrific experience.

    Also now reading you have also endured Lyme Disease, well, you must be very, very strong and determined…I can’t imagine having a double whammy in life like you have now with the addition of ccp/covid.

    Prayers for a complete recovery for both of you and that you will get the help you need. God does work miracles. 🙂

    Liked by 1 person

  36. I am so very sorry to hear this Cee. I remember when you posted that you were fleeing the smoke. I had absolutely no idea. Our thoughts are with you.
    You’re to be commended for posting this very personal story. Hopefully this will open some eyes.
    All the best to you and Chris.

    Liked by 1 person

  37. So sorry to hear that your Covid experience is one of the long haul ones. I hope even though they have a vaccine that they continue research on the disease and what to do with it long term.

    Liked by 1 person

  38. I had no idea that you and Chris had contracted COVID 19. I guess I must have missed that post. I’m so sorry that you’re both dealing with these on-going side effects. It’s been quite the year with the wild fires and now this. I just watched a video put out by a doctor who has his patients lie on their stomachs but more of a downward dog position to help clear up their lungs. Not sure if that would help you and Chris. He also recommended a ginger tea with curcumin and honey. Wish I could be more helpful. Carol

    Like

  39. Hi Carol, Thanks for all your help. I love ginger anything …. so I may try it. Becky (square host) suggested singing to help clear the lungs. In England they opera singers are working with long haulers and giving lessons. It seems to help. So Chris and I have started singing, and it is making a difference.

    You are always helpful and ever so kind and caring. Thanks Carol. 😀

    Like

  40. So sorry, Cee. I hope it has improved in the last three months, and that you’re getting some help from somebody, such as this support group. The video is quite eye-opening. I wish you all the best.

    Like

    • We never got quite as bad as what they showed in the video, but it has definitely changed how we’ve lived our lives the pat six months. We are slowly getting over it. Chris had her shots and now I’m about to schedule mine. The vaccines tend to help long haulers. It helped Chris out a lot.

      Liked by 1 person

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