How does sickle cell disease affect your day-to-day life? What activities does sickle cell affect the most?

[CalvinHU]

What things do you find most hard to do when you have symptoms?

Share your experiences and interact with other members in the comments below!

[delectablydopecrown]

It affects every area of my day to day life, there are some days that are better than others, things like shopping and cleaning can be a hard task if the pain is a lot or it can take longer than normal, the best way to sum it up for me is that it affects every area of my life

[JJibogu]

The most hard to do when having symptoms is obviously having to cope with the excruciating pain which I can't find anything to describe it as. In short I find it difficult to go to work or partake in any activity. However if the pain is mild, I might be able to cope and still go about my daily activities. To reduce the level of discomfort I have my pain killers within reach and avoid running out of it.

[miriuska]

Life is not normal as for other people. There is always an underlying fatigue (hemoglobin levels are always lower) and pain is very frequent even when it's not very strong therefore not requiring hospital admission and manaeable from home. It is a challenge to have your own place, do the shopping, the cleaning, work, exercise and socialize (and I don't have kids). Nights are frequently irregular. Sleep is not continuous. Drinking plenty of fluids has a downside of peeing a lot as well. Anxiety is stronger. Every day. 24x7

On top of that you have to take into consideration the weather - if it's too hot, too cold, if the weather is unstable. You need to be prepared for everything. If you go out for a walk and it's longer than you expected you may not be in good shape to get back on your own. But you have to.

Stress is not your ally but you need to learn to live with it. What is a challenging situation for a "normal" person is a lot more difficult to you as you have to deal as well with the side effects of the disease. In a working envirnoment it's tough. Stress, A/C, tight schedules and not having time to rest or eat/drink properly throughout the day.

And then there's sex. You can't always use the same contraceptives as other women. Sex is an intensive activity and most of the times you are not 100% OK.

You can pick and choose. Some days are better than others but life goes on and so must you. That's why we are warriors.

[Della30]

How does SC affect day to day life - simple answer what does it not affect. You live minute to minute because of the unpredictable nature, what worked yesterday or an hour ago may not work. You are constantly adapting to be able to live. The pain can be gradual and can be instant. The symptoms can go away or get worse hence constantly adapting. There can be warning signs and at times you just get blind sided. For me I have to make sure my body is also in equilibrium any changes am in trouble. As I said yesterday too happy or too sad can bring on a crisis. I can eat something today have the same thing tomorrow and I am in trouble. I may go through a week being a super human and the next I am so debilitated it feels like two different people. Every symptom is different from the last time you had the same symptoms hence the anxiety and frustration with being asked to describe or people doubting you because you were ok a few minutes or days ago. It affects every activity because you don't want is going to set it off. The fear often makes you live in constant anxiety which can also trigger a crisis or you live life to the full and pay the consequences. You are damn if you do and damn if you do not. Living with SC is definetly not a walk in the park and life is extremely tough but somehow life also goes on because there is no other way. Some symptoms can make you want your life to just end but the euphoria from surviving it is second to none. We indeed are super warriors.

[Anzy]

Sickle-cell affects every aspects of my life directly when I am in pain and it physically stops me from doing something or indirectly when I won't even consider doing certain things because I know it can trigger a crisis. I try not to let fear of setting of a crisis control how I live my life but then again I don't want to be in pain all the time. It is a fine line that ha taken me year to perfect.

Everything is hard to do when I am having a crisis, I don't attempt to do much but breathe in and out.