Handling Covid as a Chronic Illness Patient

Covid is one of the worst things that has ever happened to me and if you have read this blog you know that is saying something!

After years of struggling with pain and random attacks, I finally had a surgery to remove my gallbladder on February 1. I thought it was the beginning of a healing journey. How wrong I was! Two weeks later, I contracted Covid (most likely in the hospital). I wrote a post about how relentless it has been here – https://www.apainfulidentity.com/fibromyalgia/chronic-illness/.

It got worse. I had to be hospitalized as my fever wouldn’t break, my breathing got difficult and I couldn’t keep food down. Every invasive treatment short of going into the ICU was done but I got out of the hospital alive and I am grateful for that. The nurses who took care of me, with so much kindness, understanding and compassion, deserve all good things in this world. They are the real heroes and heroines!

If someone tells you that Corona is just like the flu, please get them out of your life. You don’t need that sort of crappy energy!

In this process, I learned a lot of tips to handle and survive Covid while living with a host of other chronic illnesses. I really hope that these will help you or someone you know if needed (although I hope you will never need it in the first place).

Handling and Surviving Covid with chronic illnesses.

1. Get tested – Don’t wait too long if you think you have Covid symptoms or have come in contact with someone who has symptoms. If testing is an option for you, please do it right away. I got tested on the very same day my first symptom appeared and that really gave me a head start in my treatment.
2. Focus on fluids first and food next. Try to drink a lot of water and get some electrolytes if needed.
3. Medication Start with paracetamol but don’t hesitate to ask for medication for your other symptoms – like painkillers for pain, inhalers for breathing, anti-nausea medication or cough medication, whatever you need. Don’t just accept that you have to suffer for 14 days with Covid and then it will get better.
4. Equipment Please get a pulse oximeter (to measure your blood oxygen saturation), a thermometer and a blood pressure machine if possible. It might be possible to rent some of these from your local hospital, pharmacy or GP in some places. The oximeter is the most crucial as it will show any dip in oxygen, even if you don’t feel the shortness of breath. This is highly important while battling Covid.
5. Nutrition If you are not able to keep food or water, insist on being hospitalized so that you can get an IV infusion of saline and glucose and possibly some type of feeding. If this is not an option, please try to get nutritional drinks to keep up your calories.
6. Self-Isolation If you have a house big enough to self-isolate, please do it. Miraculously, due to early testing and rigorous self-isolation, I did not pass the Covid infection to my husband.
7. Mental Health Please keep an eye on your mental health, especially if you are self-isolating or hospitalized without visitors. Text your friends and family if you can’t talk. For me, this was a lifeline, along with the #NEISVoid community who helped me stay sane and hopeful while being realistic about the situation.
8. Movement When you have crossed the peak of your Covid infection, try to do small movements with your legs and hands in bed, so as to not lose too much mobility. Please enquire if you need something like Fraxiparine (an injection) to prevent blood clots or deep vein thrombosis from being bed bound for a long time.
9. Post Covid Follow up Please speak to a psychologist and also get a Covid or COPD specializing physical therapist to help with your recovery. Insist on a 6 week follow up and get your lung x-rayed to make sure that there is no damage.
10. Children If you have children, please try to get some kind of mental health support for them. Our son struggled a lot with the self-isolation and hospitalization, not to mental missing school just as it opened after over 2 months. It would help if your partner or family members also had some kind of psychological support.
11. Chronic Illnesses If you have chronic illnesses, please keep track of your medication and make sure that any new medication that is prescribed is checked for contraindications and allergies. I had a whole body rash for codeine that the doctors wouldn’t believe until they gave it to me one more time to see it happening right before their eyes! I hope you will be more forceful than I was (although I hope you never get into this position in the first place).
12. Have your PCP on your side and try to get them to coordinate with the hospital doctors who are treating you. This saved me a lot of grief. My PCP checked on me twice a week (and now once a week) to follow up).
13. Supplements Load up on your supplements – Vitamins B12, C, D, Magnesium, Zinc+Selenium and Lacto Ferrine were the ones prescribed for me. My PCP mentioned that Covid is also causing gastro intestinal issues so please check if you need digestive enzymes (like Gastrozym) or laxatives if you are constipated or electrolytes if you have diarrhea. If you are prescribed antibiotics, please make sure you get the necessary probiotics at the appropriate time.
14. Netherlands If you are in the Netherlands, you are entitled to Thuiszorg for Post Covid recovery. Please get a referral letter from your PCP or huisarts, call a Thuiszorg that has a contract with your insurer and get help for showering, changing etc. You can call Vegro to rent a shower chair, wheel chair and hospital bed (that can go up and down, helping you to breathe better while sleeping) for 26 weeks for free (or minimal cost). You are also eligible for physiotherapy from your basic insurance post Covid, even if you don’t have additional insurance for physiotherapy. You are also entitled to speak to a Basis GGZ through a referral from your huisarts covered in your basic insurance.
15. Friends and Family Finally, don’t hesitate to ask for help from friends, family and neighbours. We would not have survived without the support and kindness of our friends who kept us all fed and helped us with groceries, picking up medication, etc. If there is no one like that, please reach out to a local charity that can help you.

Covid struck me at the worst possible time, just as I was recovering from a surgery. So my recovery process is going to be rather long, as it has affected my other conditions (especially COPD and POTS). I am mostly bed bound and use a wheel chair to get around. This is a huge change for me & I’m not entirely certain how I’m dealing with this. With the help of my husband, son and a wonderful PCP, I hope to recover slowly & steadily and get to my baseline. Thank you for your support during a dark time – I will always be grateful for that!