Sick and Tired (of Being Sick and Tired)
When you have sickle cell you can become severely anaemic which makes daily simple tasks become difficult and exhausting. I found bathing, cooking, cleaning, going the shops or even on a long journey became very difficult and tiring.
Before having my exchange transfusions, my haemoglobin would rarely be higher than around 6. Someone who doesn’t have sickle cell or anaemia has haemoglobin between 12-16. With my haemoglobin level being so low and constantly in hospital for sickle cell crisis my body was extremely weak. There was a time when I couldn’t physically hold my body weight to sit up and had to have pillows to prop me up.
I would often feel like I’m not living, I’m existing. I found I had no energy to do anything so I was always at home and usually in bed which effected me mentally. It would bother me that I couldn’t do normal things like my peers; it’s still something that bothers me till this day. It took me a very along time to accept my limitations, I didn’t want to accept defeat I wanted to be a “normal” 20 something, but as I got more and more depressed defeat came easy.
Throughout life I always felt like my sickle cell always eventually won and I was tired of fighting. I was sick and tired of being sick and tired; I just wanted to give up. My mind went to very dark places, at times I would pray for death, I would pray to be taken away and freed of my body, it was a burden I no longer wanted to carry, it was everything that was holding me trapped.
I believe that depression never fully goes away not in my case anyway. I believe that you have your good days and your bad/down days but you just learn to appreciate those good days…
My #sicklecellfamily I pray for your health happiness hope and strength, Alhumdulilah
Aliya
You can find Aliya on Instagram here: @stylemealiya
Don’t give up I am seventy years o l d I have Alfa Sickel Cell Thalassemia I have good days and bad its hard the grace of God has kept me here this long my body is sore and ache all the time and then a crisis sets in I just pray for the good days just dont give up better days will come
I echo the above. Don’t give up!
I found out at 58 that the reason I was always so tired was because I was an alpha thalassemia sufferer. It hasn’t stopped me going to the gym twice a week though or carrying on with my hobby of drumming.
These are high energy activities which require a massive amount of will power to carry out, but if you can do at least some form of exercise, you will benefit from it, as least then, your body will have a justifiable ‘other’ reason for being tired. You might even lose a bit of weight too, which is always helpful.
Aliya, thanks for sharing this information with us. All I can say is that you are a beautiful and strong gal. you’re a fighter, a worrier indeed. Don’t give up on your fight my dear. Enjoy your good days to the max and talk to someone when you’re feeling low. I have a 10 year old son with sickle cell disease and my heart cries each time I see him taking his daily medication and supplements. When I speak with him he tells me that taking medication doesn’t bother him at all because he has his technique which makes it easy. He always looks at the positives and this keeps us going.
Under COVID 19 guideline peoples are asked to stay at home but this is making the problem of depression worst. Brisk walking can help to get rid of depression and anxiety.