Living with Sickle Cell Diesease

[Feio]

I am a 50 something yr old lady living with SC. As a young child and teenager, I suffered from many crisis' sometimes having to be admitted to hospital, where I would be left writhing with severe pain until some Dr would finally administer medication stronger than paracetamol. My parents did not allow me to use SCD as a reason not to achieve my goals. They taught me to recognise the onset of painful episodes, stay hydrated, take pain strong medication, (I always had a supply of strong painkillers), and get on with it. Failure was not an option! That might sound hard hearted but that could not be further from the truth. They recognised very early on, that I needed to stop that pain before it got to the point were I needed to be admitted. That train of thought enabled me to get through school, university and work. Obviously there were times when I needed to be hospitalised, but luckily those times were few and far between. I was really thin and could not see how anyone would want to marry me, let alone have kids. Luckily I met a man who loved me for me and didn't care about my SCD. I went on to have 2 children who are now successful young adults. Symptoms of SCD started more frequently after I was 50. I am not sure whether the onset of the menopause made the symptoms worse. Luckily for me I attended a Pain management course at St George's Hospital, Tooting, run by Dr Rhodes, Dr Love and Rebecca. I met 2 other mums and we discussed our struggles living with our diesease. We all felt guilty that we could not always work full time, do more activities with our kids or pursue our dreams. The course thought us how to deal with our moods, manage our pain and generally have a more positive outlook on life. It also showed us that we had actually achieved a lot given our circumstances. I thank the Pain management team everyday for giving us the tools to deal with our diesease. So now, we don't care if our houses are untidy as long as it's clean! We are no longer ashamed to ask for help from our family or friends and if we are unable to cook a meal from scratch, then a takeaway will do. It's about having quality time with our families and thanking God for surviving another day! We may not be painfree but we learned to do as much as we can when the pain is bearable and take time out when it's not! So to my fellow SCD sufferers, don't give up. Get your GP to find you a Haemotologist that understands our diesease and make sure you attend your hospital appointments. We only have one life, and even though life can be tough, you have no choice but to live your best life!

[Marielle]

Thank you so much for the positive outlook and stay blessed

[funmilash]

Thank you so much for this. I hope you continue to live life to the fullest. Do you mind if i share this?

[Feio in reply to funmilash]

You are welcome. I don't mind if you share my post. Hope all is well.