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Living with Long-term Covid

An actual example:

I have a close friend suffering from long-term Covid-19. She has had it for over a year now, her main symptoms are extreme fatigue and brain fog and her sense of smell is affected.

My friend had Covid-19 twice, once when it first came out and she wasn’t vaccinated and once about a year later after she was vaccinated. It was after the second time the symptoms did not go away and she was diagnosed with Long-Covid symptoms. They didn’t know much about it at that time, it was suggested that the longest they knew of someone having it was a year. At that time she was hopeful, she would get through this.

In my friend’s case she had good support from her employer and was able to work limited hours and from home. She found strong support medically in her community. She was one of the lucky ones, this isn’t always available. Many have suffered alone, or lost their jobs, their income and their security. Long-term Covid is one of those unknown conditions, it is new and not much is known about what to expect if you do have it.

My friend was advised to rest and slowly start getting back to her routine. Hopeful rest was what she needed. She did rest and would have good days and bad days. They put her on a protocol similar to those with a concussion, they call it pacing. She is pushes her self daily to get back to her normal routine. To start, she would work one hour a day, then add an hour a week. It was a slow process that took her eight months to get to full time hours.

It seemed she was getting better and all of a sudden she suffered a crash and what seems like a full relapse. No one knows if she had COVID again or if this crash was brought on by another illness. It has a brought more uncertainty and a whole new set of fears, she is uncertain if she can live a normal functioning life without relapsing.

I asked her to talk to me about her fears so I would have a better picture for you of what living with Long-term Covid is actually like.

Here are some of the thoughts and fears she experiences daily:

  • Many people have had Covid-19 and theirs didn’t develop into Long-term Covid. Is there more wrong with me then they are saying? How long will this last? They said maybe a year it’s over a year.

  • I am angry, where did this awful disease come from. What else don’t we know about how it will continue to affect people?

  • Are they telling me the truth? Are there more long term affects they aren’t telling me about? How do I trust anything they tell me

  • Can I give Long-term Covid to my family, my friends?

  • Is this doing harm to me internally? Will I have issues from this all my life? Will my life be shorted by having Long-term Covid? Will I see my child grow up? Am I going to die?

  • Will I continue to crash, to relapse? What is really going on?

  • Every time I get sick will I crash like this? Does this mean I have a weakened immune system?

  • Will I crash today? It is paralyzing not knowing what or how much I can do. If I do that project will it be too much and I will crash?

  • What if I travel, then crash and I am alone? Crashes take 24-48 hours to fully manifest. I can feel fine one day, then not get out of bed the next?

  • Yesterday I felt good, today I am exhausted. What did I do to bring this on again?

  • Will my life be about constantly building myself up just to crash again? When will it end?

  • Will I ever be normal again or is this my new normal? I hate the feeling of the brain fog descending on my body and its not fair to my family to miss out on things as I cannot function. The fog makes me snappish and angry.

  • I am incredibly grateful to my employer for supporting me, but what if I can never work again?

  • Every time I go on short term disability, I feel so guilty for letting my team down for not being there.

  • I just want my energy back, will I ever get my energy back? More than that, I just want to be able to get groceries to feed my family, without being bedridden the next day

Not an easy thing for her to live with and no real answers to ease her pain.

What is Long-term Covid?

Not much is known about Long-term Covid-19, they know it exists and what some of the symptoms are. If you have long-term Covid you are living in the unknown, you do not know when or how you will “crash”. You are always on edge, living in fear of doing something or too much that will bring on a relapse of symptoms. You are quick to temper as the frustration is continually building. Your life is vague, and vagueness is a very difficult state to live in. The answers just aren’t there.

This is what is known so far:

  1. Long-term Covid-19 is a term used to describe the health problems that can persist in some people who have had an infection with the Covid-19 virus.

  2. Long-term effects may include fatigue, shortness of breath, headaches, and joint pain, as well as other physical and mental health problems.

  3. Long-term effects of COVID-19 can vary from person to person.

  4. People with long-term Covid-19 can experience crashes and possible relapses where all of a sudden their symptoms return and their body is exhausted and they need to sleep.

Health Canada advises that Common symptoms may include:

  • Fatigue

  • Breathlessness

  • Cough

  • Joint pain

  • Chest pain

  • Headache

  • Loss of smell or taste

  • Depression

  • anxiety, or other mental health concerns

  • Difficulty concentrating , brain fog

  • Trouble sleeping

  • Gastrointestinal issues, such as diarrhea or loss of appetite

  • Fever and chills

  • Skin rashes or discoloration

  • Swollen lymph nodes

There is currently no specific treatment for long-term Covid-19. The long-term lasting health effects are unknown. Treatment they have so far is individualized and depends on the severity of symptoms and the presence of any underlying conditions.

It is generally suggested a person with long-term Covid-19 slowly returns to daily activities. This can help you return to your regular duties but does not ensure you will not crash and end up right back at the beginning. Having to face the long journey of slowly getting healthy again one step at a time.

Treatment for the symptoms and supportive care is usually recommended.

This may include:

  • Rest

  • Fluids

  • Fever-reducing medications

  • Treatments for specific symptoms.

  • Treatments to improve the immune system such as vitamins, minerals, and herbs may be helpful.

  • In some cases, medications may be prescribed to reduce inflammation and improve lung function. In severe cases, hospitalization may be needed.

  • Pacing or a concussion protocol to support the slow return to normal activity

  • Working with a Therapist to work through these complex emotions.

These all seem to be treating the symptoms at the moment, not curing the problem.

Wendy’s words………As you can see Long-term Covid is very debilitating and is very much like living with a chronic life- long disease. Or is it? It is all new and no one really has any answers. Some have lingering effects and some have recovered although they don’t know if it will return again.

Not much is known yet and not much is talked about. People are suffering in silence wondering what is wrong with me I don’t have any energy? If you are one of these people I suggest you talk to your doctor to see if it’s possible you have Long-term Covid. The more people that come forward the more the condition will be recognized and the more they can learn about it.

Let me know your comments on this blog. Do you or someone you know suffer from Long-term Covid?

Leave a comment on our website we would love to hear your story.

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