ROBERT'S STORY | GOOD DAY, BAD DAY
Updated: Nov 1, 2022
When did you first really understand
what sickle cell was
I realised what sickle cell was a long time ago, through the pain I was in all of my childhood and not being able to do things that my friends were allowed to do. My parents were continuously being called to pick me up from school and I felt like I was made to have special treatment by my friends. Teachers at school were unsympathetic, bearing in mind I grew up in the 80's 90's, so no love lost just because I have sickle cell anaemia. I had to be tough and get on with it.
What symptoms do you typically have and
how frequent does your sickling occur
The main thing is the pain. That is a life changing experience. I literally cannot explain the severity of the pain. I cannot stop crying, struggling to breath and either try to put myself into a warm bath, lay on the floor or crawl into ball and wait for what feels like hours for an ambulance to come. How often do I have crises? Who knows could be good for one day to years but when sickle cell attack gets you, it's a complete shut down and the biggest thing is recovering after an attack.
Has sickle cell caused other complications
I lost the sight to my right eye due to retina detachment which was absolutely ridiculous, just at that time in my life, early 30's with one eye. I also suffer from arthritis which has added major problems, with hip, knee and back problems plus hand deformity.
How has it impacted on your education and employment
School was difficult, always trying to catch up. Having sickle cell caused significant problems with my early school years. I continuously missed loads of time off sick from school and important times, I lost friendships. It always felt like people felt sorry for me, which caused me to be a nightmare getting into trouble with school and the police. With regards to jobs and employment, I always was able to get good, well paid jobs and it became very clear that employers would fully support me at the time when I got sick but I had to give up an extremely good job with BT. Virgin Media is one company that went above and beyond, before and after care but there were some employers who broke every rule around supporting people with disabilities.
What does a good day look like?
A good day is waking up almost pain free. I can move around my home a little easier and can plan visiting my family or getting in essentials. I do have to be mindful not to push it on my good days, as I will pay for it later. I will feel slightly less tired and can focus a little more on what I need to do, catch up on chores that I cannot do at other times. I stop and start what I am doing to hold on to the energy that I have but may still often leave things incomplete.
I will take this time to enjoy spending time with my children.
Plans for the future
I have a really good relationship with the specialist clinical nurses at the centre. They have helped me considerably with joining up the reports from each of my consultants and test results, ensuring that case conferencing takes place for any planned interventions. They always visit and attend to me when I present at A&E or am admitted to hospital. This makes me feel more confident about the care I receive. I am aware of stem cell transplant trials for the cure of sickle cell and am hopeful that one day, this will be available to people living with these inherited blood disorders.
I always try to think positive, keep my pain controls in check, eat as well as possible. I keep as much stress out of my life as possible and make sure I attend my appointments and have good communication with the sickle cell nurses, the support group and I want to help people that suffer with sickle cell. Hopefully, I can get into a job either employed or self employed but just want a quality of life for my kids and myself.
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