Staying well with Covid fatigued spouse

[MNWSW]

I was diagnosed with CLL one year ago, but have had lifelong autoimmune disease issues and POTs that becomes disabling when I get any type of infection. I was devastated when I was diagnosed with CLL knowing that a more compromised immune system would lead to more infections and more time unable to participate in life. I am ok participating in life with a mask on as this is an easy trade off of months recovering from an infection.

My spouse has Covid fatigue and is unwilling to continue to take precautions at work and in his social life. Has anyone else came up with solutions to keep yourself healthy that allows your spouse to live life without bringing ever circulating virus home?

[Sepsur]

my experience is not quite the same but my family has gone back mostly to normal - I try and remember to wash my hands more frequently - sometimes I become complacent and pay the price 💙

[MisfitK]

My solution has been to have my spouse handle all the germy indoor kid activities (that my kids do). Since my whole area is back to normal, we have split family and household tasks so I do the safer ones and he does the less safe ones (and in late December/early January or during huge flu/Covid breakouts, that becomes 95% him doing the activities vs the 50/50 of spring/summer/fall)...and if he ever feels sick, he has a basement bedroom (our guest room) to recover in til he's better.

We both take vitamins and I have a combo zinc/elderberry/C/D vitamin for anyone in the house to take if they are exposed to anyone around them with symptoms (this is expensive and elderberry effects are uncertain with our cancer, so it's not taken daily).

Is it 100% - no. I got a nasty virus in January (and a lighter one earlier in October). But I am only getting sick when multiple family members are getting sick, and I'm not getting sicker than they are, so it's "working" well enough. I have not gotten sick at all in the past year as "the 1st person" or "the only person." So, if the family is healthy, I am, too. So, I'll take it.

[Teemed]

I find it interesting that prior to Covid CLL patients did not wear masks. So I ask myself, what is the incidence in my community and how famous the current variant?

This takes off some of the stress

I have CLL , my wife does not. I don’t want her to isolate or mask beyond her comfort level. I try to think of it as my responsibility to stay germ free not hers. It’s my job to distance, hand wash, eat right, exercise, manage stress, take my meds etc.

it’s difficult at times to work it out and ultimately I have the job of doing what I deem prudent

Sending you my best wishes and prayers

[Big_Dee]

Hello MNWSW

I am all about protecting myself since I am the one with CLL. I wear masks, sanitizer and stay away from coughing people. I have no problem letting my wife do whatever she wants. As my wife works at hospital and wears a mask all day long, I have no problem with her not wearing a mask at home, indeed I don't either. It works for me, neither my wife or myself have ever had covid. (Knock on wood).

[Ibru]

My husband has CLL. I am healthy. I have basically stayed home for two years and only gone out with an N95.

For year three, I started going out frequently but always with my N95 mask. For instance, my bookclub meets in restaurants. I attend, but do not take off my mask. I order my food to take out, and eat it later. When I travel, I come home and live in the basement, which is completely seperate, including the air, for five days and then get a PCR test. When negative, I move back upstairs. I find I am losing friends. So much socialization involves eating together.

I told my husband that in the spring, when flu and covid hopefully die down, I intend to start going maskless some of the time. He is fine with this as he says "if I die, I know where I am going."

The dilema I face is that I have a medical background. He does not. He relies on me completely for all his healthcare decisions, and decisions around distancing and masking. I feel like I could make a decision that could result in his hospitalization or death. That has kept me in for three years. That will cause me anxiety if I begin to go maskless.

There is not a single solution that is right for each couple.

[Sanders9]

My husband has CLL. We have been shielding for 3 years and I must admit it is hard. However, I choose to shield with him as I don't want to risk picking Covid up and giving it to him and potentially killing him. The approach to manging risk is different for each couple. I can work from home so that helps and we are fortunate to have a large house where we can be together or apart as needed. The garden is also a haven for the soul. The fear of Covid is like a beast for me and I am scared as we cannot shield forever. I don't see people I see Covid 😪

[scryer99]

We debated this issue in our household. I have CLL and have recently stepped back from a high-travel professional life due to immunocompromise issues and the wear and tear on my health.

We also have two teenagers in the house. Teens are not noted for their consistency or their interest in measures that make them stand out from peers. My wife is more supportive, but there's overall household stress to consider.

Where we landed is the following:

1) Stress that in our home, if you feel bad, we need to be proactive about managing that. Take the temperature, test the COVID, go get it checked if you need to.

2) Our teens, who have less risk of spreading COVID and tend to be generally fit, we have left our prevention at that. No masks, no COVID boosters after the first round.

3) My wife has been a little more cautious. We're both in our 50s. She does the basics: try to avoid obvious infection zones like indoor bars, mask up when indoors, wash hands and sanitize frequently.

4) Accept that some things are in our control (our own actions) and some are not (others' actions) and manage our own actions accordingly.

It's worked reasonably well so far.

- Kids definitely responded well - they alert and distance if they are feeling bad

- Wife is a bit stressed but OK and we're both healthier as a result

- I have a happy household

- I so far have avoided COVID and major illness. I get run down from time to time with what are likely low-level infections, but accept that as the balance between "living as full a life as I can" with "managing my CLL."

I should mention that my immune system is at this point compromised but not completely crashed. If I had neutropenia < 1, I'd ramp up precautions. And I have been more careful since starting treatment and seeing effects on neutrophils and IgA etc.