The death of a loving, supportive spouse and how can I adjust when I have an autoimmune deficiency and cannot leave my house?
I have had chronic neutropenia for over two years now. I was able to care for my spouse until he died 15 months ago. What a pleasure. Due to my health I don't have my usual get up and go. I'm not stressed about my health and my providers are good and supportive.
Having neutropenia is challenging as I have to wear a mask anywhere I go (mostly just to doctors). I have been blessed with two friends who keep in touch and come by weekly. Cleaning constantly is fun, ha ha. But it gives me something to do.
I have crafts I can do, but my weakness and fatigue overwhelm me. Has anyone had chronic neutropenia and might have some ideas? I know drinking one caffeine drink in the morning use to help. I've been hospitalized twice in 2022 (one stay 8 days the second one 10 days).
I keep positive and when it comes to my loss of my best friend who happens to have been my spouse. I use the word celebrate the last 3 months to remember our love and relationship. Wow, there is so much warmth and comfort.
I believe I am just tired that I cannot fix neutropenia and yes I've had different onocologist the best in the state I live in. So.....I need to learn to be safe and readjust my expectations to reality. My job is to stay germ free etc. My best friend thought she had only allergies but she also had a viral infection. She infected five people (including me). Please be careful and mindful when you visit. Have a good day and I trust all of you will find comfort and strength along with good advise as we go through challenges.
Thank you for allowing me to post this.
I am carefully creating food I can eat as you are definitely limited. I laugh when I don't succeed and get happy with new creations. I never thought I would enjoy frozen cut okra but it is good in soups.
My doctor ordered home health care for 6 weeks, tomorrow I am being discharged. They taught me ways of moving and isometric exercises. I feel stronger. Yeah!
We think we can trust our dearest friends, but after learning several stories like yours, it’s clear that we can’t.
I hope you’ll feel better soon and will be successful in staying germ-free. It’s so difficult when others don’t care about us enough to keep
us safe.
The studies have proved isolation is more detrimental to our health then anything.
Just saying.
Your attitude is fantastic and that is what will see you through. Build a good support system (sounds like you have already done that!) Take care of your heath and do your shopping,etc when there are fewer people out and about.
I'm sure the fatigue is a huge impediment, but I learned the hard way, after I was through with chemotherapy, that I never returned to 'baseline' and after almost 3 years, I'm not going to. I listen to my body and when I am tired, I lie down for a bit. Once in a while a late afternoon nap becomes 'bedtime'. Amd that's OK.
Probably your dr wants you to stay as active as you can and be kind to yourself!
https://neutropenianet.org/
Online communities may not be as good as getting together with real live people but there are many active forums and social media sites that cater to a variety of interests.
Your local agency on aging will be able to tell you what services are available and may have some ideas for you.