It’s Difficult to Manage Sickle Cell Pain at Home During a Pandemic

Mary Shaniqua avatar

by Mary Shaniqua |

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I have not felt well recently.

I have been struggling with a lot of pain from sickle cell crises. In normal circumstances, I think I would have gone to the hospital at least once in the past two weeks, based on the amount of pain I have been in. But the pandemic has made me increasingly anxious about going to the hospital, so I have tried my best to stay away. It’s not ideal, and it runs against the general medical advice here in the U.K. — I know.

While trying to avoid the hospital, I have had to rely on opioids, namely oxycodone and codeine. Trying to use these medicines instead of the stronger subcutaneous morphine I receive in the hospital has not been greatly successful, as the pain is lingering longer.

The opioids have allowed me to continue with my basic, day-to-day tasks. Unfortunately, they come with some really annoying side effects, such as nausea, vomiting, drowsiness, and confusion — all of which I have been struggling with recently. It’s an absolute nightmare!

I worry not only about the side effects of opioids, but also the risks.

Frequent opioid use can result in increased sensitivity to pain. So, I try my best to tolerate the pain as long as possible so that I don’t take opioids too frequently. I already experience so much pain in my day-to-day life that I dread the thought of my pain increasing as a result of opioid usage.

Opioids also are highly addictive. There is already an inaccurate stigma of drug addiction attached to sickle cell patients, so I am always conscious — and genuinely scared — of developing an addiction to pain relief. Many factors drive this fear: I do not want medical personnel who believe that inaccurate stigma to ever have factual grounds to deny me necessary treatment, nor do I wish to be an example of why they refuse to believe other sickle cell patients in the future.

Additionally, it goes without saying that addiction can ruin lives. It can have a detrimental effect on one’s physical and mental health, and it can cause personal issues. Sickle cell disease aside, I have a pretty good life with meaningful relationships and a good career. I don’t want the risk of addiction to ruin any of these things for me.

Trying to navigate life with pain during the best of times is difficult. It is something that sickle cell patients are always learning, as our bodies change and adapt to different types of pain and long-term effects of the disease.

One of my greatest struggles as a sickle cell patient is identifying which painkiller to use for various levels of pain, and when to call it quits at home and go to the hospital. But dealing with it during a pandemic? That is a really hard task!

If you are struggling with an opioid addiction, please remember that it is a health problem and does not reflect on you as a person. Please try to reach out to support services available in your locality.

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Note: Sickle Cell Anemia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.

Comments

Teigan Gyan avatar

Teigan Gyan

Hi Mary I am also a sickle cell patient I wanted to know how much the pain affects your day to day routine I know how it feels but I would like to see it from your perspective not all sickle cell anemic patients are the same.

Reply
Mary Shaniqua avatar

Mary Shaniqua

Hi Teigan,

Thank you for your comment. My apologies for the delayed response, you may have seen from my latest column that I was in hospital. My daily pain fluctuates some days it is manageable and I can be quite independent, in that I can walk, manage my personal care, prepare my own meals and enjoy a healthy social life. However, on the flip side, I have some really bad days where I am pretty much bed bound and unable to mobilise independently. It is also not just the pain that affects my day to day life. Sometimes I may not be in pain but I will feel very weak so it makes daily tasks like socialising, managing personal care and meal preparation extremely difficult. How does sickle cell impact your day to day life?

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Teigan Gyan avatar

Teigan Gyan

And please get well soon

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