World Sickle Cell Day – 19th June 2020

Sickle Cell blog

This week’s blog comes from Chantelle from Sickle Cell Care Manchester. We have been working with this charity organisation recently, assisting them in applications for funding opportunities.

Hi, my name is Chantelle and I am a Volunteer Coordinator with charity organisation Sickle Cell Care Manchester. I am in my final year as a mature student at Manchester Metropolitan University studying BA Honours in British History.

Today, Friday 19th June 2020, is World Sickle Cell Day. My reason for writing this blog is because I have Sickle Cell Anaemia which is the world's largest hereditary blood disorder, as well as being a post kidney transplant recipient and someone with Diabetes type 2. Since Monday 23rd March I have been under quarantine and confined to the four walls of my apartment. This is my experience of living a quarantine life under shielding guidelines.

I am considered ‘vulnerable’ according to the government’s COVID-19 instructions, which as a strong independent female kind of doesn’t sit very well with me! Despite this, the risk of contracting COVID-19, along with my pre-existing conditions, is simply not worth risking and I have abided by the NHS and government guidelines to the best of my ability.

It has not always been easy however, I adore my own space and am very comfortable with my own company, some might say I am too comfortable! So I have not struggled too much with this aspect. What has been an issue for me is not being able to visit family and friends, or even more basic than that, little things like going to a grocery shop as and when needed. And hugs, oh how I have missed hugs!

Self care when living with Sickle Cell Anaemia is very important, and during this time it has allowed me to take time out and listen to my body. It goes through a lot of pain on a daily basis and I am on a regime of medication in an attempt to control the pain. This doesn’t always work, but having the time to meditate and listen to my body allows for a moment of ease. Recently I discovered buzz Manchester Health & Wellbeing Service and have been speaking with buzz Neighbourhood Health Worker Patsy who directed me to the buzz website buzzmanchester.co.uk which has lots of useful information.

During quarantine, I have been reading for enjoyment purposes rather than having to read academic books for the purpose of University essays which is great. I have implemented exercise into my daily routine, whether it's just going for a walk around my local park, yoga routine or simple stretches have really helped me. I typically find exercise difficult due to my Sickle Cell Anaemia which affords me the displeasure of experiencing joint pain and stiffness all day, every day so low intensity exercise is more achievable and I really like the buzz Physical Activity Referral Service (PARS) exercise videos with a range of exercises that can help with my condition. Mid-morning meditation has become my new bestie as it helps me to prepare for the day!

Overall, looking at the previous twelve weeks and how many more are ahead, it has been most important to remain as positive as one can in these unknown times. I understand that this is much easier said than done and, on those days, when it's difficult to even get out of bed, I allow myself to sit and wallow, this is okay but try not to do this for too long.

I have sought support from my mum and family members which entails rather long phone calls and Zoom sessions and checking on my close friends. The internet has been a really useful tool, I’ve used it to check out book reviews and exercise routines and I’m looking to learn sign language as a new skill during all of this free time. The Sickle Cell Care Manchester website sicklecellcaremanchester.co.uk has a wealth of information, advice and guidance, especially dedicated to coronavirus such as things to do during this time along with help and advice links.

I would urge anyone, whether ‘vulnerable’ or not, to fully take advantage of this time. Whether it is to take time to relax, learn a new skill, take up an old hobby, whatever you do enjoy it and appreciate it for we will never get this time again!

Stay safe, Chantelle x

Here are some useful websites to check out:

kidney.org/kidney-basics

diabetes.org.uk/diabetes-the-basics/what-is-type-2-diabetes

nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk/advice-for-people-at-high-risk

sicklecellcaremanchester.co.uk

buzzmanchester.co.uk


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