I admit it. The Covid pandemic has caused me to behave in ways I never would have thought possible. I snapped at a small child for sneezing near me! I give people “the look of death” if they cough for any reason (I’m sorry if you are choking on your food!). I feel like I have become a hypochondriac of sorts! Every tick of my temperature (even if well in normal range) is a potential crisis, and I now have a pre-sleep routine of checking my temperature, oxygen level, and pulse before turning in. I have not had the virus, as far as I know, but I feel like it is always lurking around the corner, waiting to attack me.

So I am constantly looking at materials that help me to wrap my head around this whole thing while also dealing with my blood cancer, and additionally the fact that my immune system is “wonky” and I am at risk of getting severe infections. And then there’s the 6-foot social distancing thing. How does that work in the metric system?

With May coming up and here in the United States it is recognized as National Health Month, I believe it is important to be aware of the signs that you are falling into unhealthy patterns early on so you can obtain the appropriate help. And for you to also be able to perceive the symptoms in your friends and family. Furthermore, it is absolutely imperative that you talk to somebody about how you are feeling!

I came across an interesting article from Medical News today showing a documented study https://www.medicalnewstoday.com/articles/covid-19-1-in-3-diagnosed-with-brain-or-mental-health-condition showing how many people are effected mentally and neurologically many months after recovering from Coronavirus. This is interesting because it opens up a whole new “side effect” that we might not have anticipated. According to this article and the sub-articles within it (like the side discussion about neurological disorders like encephalopathy) these things, left untreated, can have devastating effects!

Neurological changes and autoimmune disorders from Coronavirus (such as Narcolepsy and MS) are very possible serious side effects from having a devastating virus like Covid-19. But early detection is always best for beginning any necessary treatments. The article at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7450256/ and also https://link.springer.com/article/10.1007/s00415-020-10131-y talk about neurological conditions that can result from major immune system damage. And they can mask as mental illness, depression, and mood disorders and go undiagnosed until they are advanced. We need to be especially aware that some of these conditions have manifested following Covid-19 illness, and have become detected as long as six months following the infection.

Chronic and acute illness and depression are no stranger to those of us with a blood cancer, and absolutely nothing of which to be ashamed! In https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml they discuss the prevalence of the mental response to a serious health condition such as cancer. These feelings are real, and are to be taken seriously. As discussed in prior writings, this is often overlooked, or thought to be a side effect of your cancer in general (https://www.mhanational.org/cancer-and-mental-health ). I have spent time–and had many deep discussions–with many of you, and I believe we all agree that our hematologist/oncologist will often “poo poo” our complaints of lethargy and emotional trauma instead of leading us to proper help. For example, did you know that we are three times more likely to suffer from depression than the general populous? But other people have told me of the wonderful programs their hospital systems offer their patients (like art classes, meditation, and beautiful gardens designed for patient “retreat”)! These programs are lacking in many areas, and sometimes it takes a large group like us to advocate for such benefits. Although Blood Cancer Uncensored cannot diagnose or treat your illness, we can certainly come along side of you and perhaps point you in the right direction.

What I am very concerned about is the impact on US, the blood cancer patient who has had the Coronavirus. I feel that with the mounting evidence, we need to do a “mental health” and overall check. If your insurance coverage or national health plan allows, would you consider checking in with a mental health provider and or a neurologist if you are having intense feelings of things like:

• loneliness
• fatigue
• sleeplessness
• irritability
• difficulty thinking with clarity
• feeling of hopelessness or suicidal thoughts
• inability to carry out simple daily tasks
• lack of normal appetite or increased appetite
• increased appetite for substances like drugs or alcohol
• headaches
• involuntary leg/arm movements

In fact, anything out of your ordinary behavior can be suspicious! Refer to this link for the entire symptom list!

I know that we have all been through a lot in the past year or so. I have a military “no man left behind” attitude and watching out for each other is essential. We have a lot of members on our Blood Cancer Uncensored group who are quiet and have not shared what they are personally going through, and others who have consistently reached out and taken the bold steps to talk openly about their troubles and difficulties. We want to help and to connect you to new friends and services, if necessary. If you are feeling desperate and uncertain about the future, please consider joining us on our weekly Zoom chat, post your thoughts on the Facebook group for discussion and support, or inbox us on our email at bloodcanceruncensored@gmail.com. We are in this together. ~Lisa