Hello everyone, I hope you all had a lovely Christmas and Happy New Year!
I am sorry until recently, I hadn’t shared any content with you all on here in a long time. You may be thinking – what on earth have you been doing?
During the first lockdown last April, I found myself a hospital for a few days, and then was self-isolating in Oxford, where I was also trying to finish my BA (Hons) Business and Management degree at Oxford Brookes University. I was fortunate enough that my boyfriend was able to stay and keep me company during the first lockdown and help motivate me to do online learning.
As someone, with learning difficulties I found it difficult to keep to finish my research project and with being unwell I finished my degree slightly later than my cohort. However, I am pleased to announce the hard work paid off, and I graduated with a first class honors in Business and Management. I then moved back home with my parents, and managed to secure a temporary contract working for a retailer E-commerce department doing website administration. Although, Covid-19 is a terrible pandemic, I have to admit it has enabled me to do the majority of this work remotely from home, which has helped me manage my fatigue. However, I am unsure if my contract will be renewed and or if it will expire in March.
In terms of my health, it has declined in a few areas but I am trying to remain positive. Due to having Mast Cell Activation Disorder, I am not allowed the flu or Corona Virus jabs incase I have an anaphylactic shock. With hospital appointments, everything seems to be on hold! I am still deciding whether to try Complex Needs group therapy again. I was also due to see a consultant gastroenterologist, a dermatologist and my ankle surgeon. When, I was in hospital last year, a consultant gynecologist suspects I also have endometriosis or adenomyosis from losing to much blood and being in so much pain. I also suspect I have diverticulitis, because of the pain I experience when I eat, the bulge and pain I have had on the left side of my stomach for years. Apparently, diverticulitis is common with Ehlers-Danlos Syndrome, so I hope this is something that can be investigated.
Other things I have been working on are my Etsy shop ChronicCreationsGB, which focuses on making chronic illness awareness accessories. I really love that the products I make give me something to focus on, raise awareness of conditions and causes whilst raising money for Ehlers Danlos U.K. Last year, I was awarded a business grant from Santander due to having to shut the online shop for a while during the first lockdown. I hope to be able to expand my shop even further to offer a wider product range in the future and really would like to offer products like stickers, mugs and maybe t-shirts and hats!
I haven’t set definite goals for 2021 yet because Covid-19 is making everything a bit unpredictable. However, I do want to get a bit physically stronger to reduce my joint pain. I will be buying an exercise bike with my brother who also has EDS, to hopefully to use. I also would like to move out of my parents home. If I find myself, unemployed I would aim to find another job later in the year, and would like to write a few more blog posts this year, and work on my Etsy shop. I would also like to try and reduce my caffeine intake to increase my energy levels a bit naturally, and read a bit more to reduce brain fog!
Thanks for reading – I would love to hear what you have been up to over the past year!
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