Tales of a Spoonie – Rebekah’s story

Hi Everyone

I hope you’re all okay and doing well, I hope this week is going quickly for everyone. This week I was inspired by a colleague of mine called Max. He has medical conditions and also always comes in with funny stories about his life and his friends that are in his life as well. He inspired me to think out of my comfort zone and this is where my mini series “tales of a spoonie” has come from.

I am working with a few people that I have reached out to and I am hoping to a weekly “interview” these will be with people from all walks of life that have struggled with a chronic illness or are in the process of being diagnosed.

I am starting the series with a lovely girl called Rebekah, I got in contact with her through a hypermobility support group that I joined when I had no clue about any of these wonderful conditions. She like me comes across as head strong and upbeat about the whole process. This is not an easy thing for anyone to go through and I have always said that everyone suffers differently and everyone has different ways of coping.

When I asked Rebekah to give me 1 or 2 paragraphs on her conditions and how she copes with them this is what she had to say

I was diagnosed with hypermobility syndrome after being a few criteria short of an eds diagnosis.
To get to this stage I had 4 blood tests, a ultrasound on my joints, 2 rheumatologist and a heart scan. I went to my GP after pain I initially thought was normal gym pain persisted and got worse over the space of a year.
My GP referred me to a rheumatologist thinking I  might have rheumatoid arthritis. I then went to my first rheumatologist he told me it was just wear and tear pains even though I was only 19 years old. After this and an ultrasound scan on my most affected joints I asked to see another doctor who straight away knew what was wrong with me. From there I was given some painkillers that didn’t work and it took a few attempts to get my medication combinations right for me. I now take 2 nsaids, 1 stomach tablet and between 6 and 8 opioids per day.
It took almost 2 years to get diagnosed and during this time my mental health took a dramatic dip.

I’d struggled with depression all through my teenage years and first went in medication was I was 18 but during this time I struggled with the unknown. After my diagnosis my mental state didn’t improve I usually describe it like grieving for my past life because I knew life was going to be different from then on. After I came to terms with it all I became determined not to let it stop me doing things I want to. Although my depression and anxiety fluctuates still to this day. I recently when back in depression and anxiety medication and my GP explained that the receptors for mood and pain are the same or are very similar and mental health medication can often help with chronic pain.

I work full time as a makeup artist at a popular makeup brand which can be hard on my bad days when my pain levels are high due to being on my feet all day but I love what I do and making others feel better about themself. On my days off I make sure I rest as much as I can so my pain and fatigue isn’t too bad while I’m at work. Fatigue plays a big part in it as well as a lot of nights when I get home from work I fall asleep straight away. I’m hoping to more closer to work to try and help this in the future.
To help on rest days and when i get home at night I use different splints, support bandages and compression gloves. These help minimise my partial dislocations.”

I think that people can learn a lot from Rebekah here as she has pushed forward with other doctors and second opinions when most (including me) would listen to one doctor and that would be it for a little while until it became a problem again. I admire Rebekah for still going out and doing what she loves while she still can, this illnesses can change so suddenly you need to live every minute as it comes.

Rebekah has also told me that she has a supportive family behind her with her mum accompanying her to most appointments and her family always checking on her to make sure she is doing okay. She has also said that her boyfriend pushes her to go out and do the things she loves but also doesn’t pressure her and make sure she is never over doing things.

I always like to add a bit of humour to my writing which pushed me to my next question, do you have any funny or awkward moments that you want to share? Rebekah certainly didn’t disappoint me “When I was 18 and started going out to clubs at the weekends my friends and I all used to laugh and joke about how bad I was at walking in heels. Every time i would fall and it was always a joke with my friends and family but it wasn’t until I found out about my condition that it all made sense. Everyone just thought I was really clumsy. Getting off of the train to go meet my friends I fell in the station in front of the full train and the staff had to help me up” and “The same night I was walking up stairs in the club and my hip locked so I was crouching on the stairs until my friend came and got me up. Everyone just thought I was really drunk.”

For me I love the fact that she has decided to trust me to open up too and is also happy to join me on my personal journey to educate those of us who may not be as aware. Even though Rebekah is not registered as disabled she still struggles in her day to day life. Just because again she looks “normal” does not mean that every minute of everyday’s a struggle for her, she’s tired and in pain but is a beautiful girl with a lot of passion she deserves to be treated like a normal human and not be judged as she may be in life just because she is your idea of “normal looking”

I am going to sign off here and leave you with the final question I asked Rebekah: What would you give as your one piece of advice for anyone else who suffers with chronic illnesses?

“Don’t be too harsh on yourself if you can’t do something you used to. It takes time to figure out different ways of doing things but you’ll get there eventually.”

I’d love to know what you think of these new blogs, I will still of course upload about my own struggles but I want to educate about others as well. If you would like to get in touch for me to ask you questions and share your story please contact me!!

Signing off for now,

Scarlett x

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