2020 Was Challenging, but I’m Grateful for My Progress

2020 Was Challenging, but I’m Grateful for My Progress
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Just like that, 2020 is over. What a year!

I do not think 2020 turned out as expected or planned for anybody at all.

When the year started, I had really low expectations. I did not expect a pandemic, but I also did not start the year with a list of plans or goals.

From 2016 to 2019, I really struggled with my health. I experienced crises frequently and had many hospital stays, including a lot of time in intensive care. This obviously impacted my personal life, in that I was unable to socialize as I would have liked, and I had to cancel holidays. I had to defer my master’s degree three times. I felt as though my career had been halted.

It was quite a tumultuous time for me. So, after going through that for three years, you can probably understand why I started 2020 expecting the worst.

Fortunately for me, notwithstanding the pandemic, 2020 did see some improvements in my health. For starters, I was hospitalized for only about 40 days, a significant improvement from the 200-plus days I was hospitalized in 2019.

I did experience painful sickle cell crises in 2020, but they were rarely of great severity, which meant I could usually treat them at home. When I couldn’t resolve the crises at home and had to go to the hospital, my admissions were not lengthy stays. I had no intensive care stays in 2020.

Ironically enough, as annoying as this pandemic has been for me mentally, I think that being forced to stay at home for much of the year had a positive effect on my physical health. I have been less exposed to the bad weather, contracted fewer infections, experienced less stress, and consequently had fewer crises.

My improved health allowed me to finally complete my studies in 2020. I was also fortunate enough to come into a new career opportunity at work. Both of these significantly boosted my self-esteem, as I had started to feel really down about working while chronically ill. I did not believe I would ever be able to progress because of how ill I had been.

If you have read my previous columns, you will know I struggle with iron overload. However, my iron levels reduced significantly this year. Though I am still in excess, I am much better than I was at the beginning of 2020.

My liver functionality is normal, which is good news. It had previously been fluctuating due to the excessive iron. I was finally able to say goodbye to the Desferal (deferoxamine mesylate) pumps that I infused to treat my iron overload, which I found to be so cumbersome.

In short, 2020 brought me some good fortune in terms of my health, career, and studies. However, it was not all roses. Being unable to socialize for such a prolonged time has taken its toll on me mentally. I miss my family and friends dearly. And restaurants — I really miss going out to eat.

Additionally, my blood transfusion program had to be amended from exchange transfusions to top-up transfusions due to difficulties with availability at my sickle cell center.

I also await the fitting of a port-a-cath, but elective surgeries were put on hold last year due to the pandemic, so I have been unable to have one fitted. There is no certainty as to when I will be able to have this done, particularly with a new variant of the coronavirus currently sweeping across the U.K.

None of us knows what is in store for us this year. I have tried to start 2021 without a long list of objectives and plans. However, one thing is for sure: I hope my improved health continues through the year.

Happy New Year, all!

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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.

Mary is a 30-year-old London-based sickle cell patient using her experiences to build up others and raise awareness of what it’s like to live with a rare disease.
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Mary is a 30-year-old London-based sickle cell patient using her experiences to build up others and raise awareness of what it’s like to live with a rare disease.
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  • career goals, top-up blood transfusion, pain, control, 2020, holiday tips
  • career goals, top-up blood transfusion, pain, control, 2020, holiday tips
  • career goals, top-up blood transfusion, pain, control, 2020, holiday tips
  • career goals, top-up blood transfusion, pain, control, 2020, holiday tips

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