Back today with the second instalment of Chronic Confessions. You can find the first one here with Alessia if you’d like a read! Today we have the wonderful Elin Williams sharing her story with us about her life with vision impairment and chronic fatigue syndrome.
You And Your Condition
My name is Elin and I’m a 20 year old Welsh girl. I’m a student with The Open University, studying a BA (Hons) degree in Arts & Humanities with my specialist subjects being English Language and Creative Writing (a bit of a mouthful when trying to explain to people)! My main hobby is blogging – I write a blog called My Blurred World and it’s what I love spending my free time doing. As well as this, I am also a beauty and fashion enthusiast and I absolutely love music and going to concerts.
What is your diagnosis/condition(s) and what was the process of it?
I’m visually impaired due to having a condition called Retinitis Pigmentosa (RP) which I was diagnosed with when I was six years old after a three year period of tests and an endless amount of trips to the hospital. I was registered as being partially sighted to begin with but since RP is a degenerative condition, my vision deteriorated over time and I was registered blind/severely sight impaired when I was twelve.
I also live with chronic fatigue syndrome or myalgic encephalomyelitis (ME) which I’m sure many will have heard of. I started having visible symptoms of this condition when I was 15 years old and after a lot of appointments with my paediatrician and what felt like hundreds of blood tests, scans and all sorts, I was diagnosed with the condition when I was 16.
I also had a diagnosis of under-active thyroid when I was 12 which was detected after a simple blood test. And to finish off the list, I was diagnosed with Coeliac disease when I was 14 and I’m on a gluten free diet as a result of that.
What were your initial feelings following diagnosis?
I can’t remember how I felt after the diagnosis of my eye disease since I was so young but I remember feeling quite frustrated about it as I grew up and as I was made to feel different by a lot of people at school for example. But, it’s something I’ve learned to accept over time and although it can be challenging at times, I always try to think positively when it comes to my vision impairment.
In terms of chronic fatigue (CFS), I was somewhat relieved after receiving my diagnosis since I, alongside the professionals, wondered for so long as to what was wrong with me and why I was feeling the way I was. Another part of me was quite upset after the diagnosis because I knew there wasn’t much I could do to control how I was feeling and since I was missing a lot of school, even before my diagnosis, I felt quite isolated because I was missing out on seeing my friends.
What are the symptoms of your condition(s) and to what extent do they affect your everyday life?
My chronic fatigue consists of extreme tiredness and weakness and it can cause me to feel really light headed as well and I have been known to collapse/faint quite a few times. There are some days when I struggle to get out of bed because I don’t have the energy and even things like picking up my phone can be a struggle on really bad days.
Life With Your Condition
Are you on medication for your condition(s) and do you get any side effects with it? How do they affect your life if so?
I take two tablets a day for my under-active thyroid which helps to normalise my thyroid levels but apart from that, I’m not on any other medication.
Are there any known triggers that set off a flare or make your condition(s) worse?
If I try to jam pack as much activity into my good days then I know I’ll pay for it on the next so I’ve been advised by paediatricians and physiotherapists to try to maintain a good balance. Something which isn’t always possible but I try my best to level things out.
Would you say you have a good support network and a designated person/team to help you with your condition(s)?
I have the best support network in terms of my family and friends who are always so caring and understanding when it comes to my health, something which I’m really grateful for. I no longer have a designated professional to talk to in terms of my chronic fatigue but I do have a lot of support around me in terms of my vision impairment and I have professionals who are always willing to help if I’m struggling with my disability.
How would you say your condition(s) has affected the relationships in your life?
When I was first diagnosed with chronic fatigue, I was missing a lot of school and that meant that I felt really isolated and disconnected from my friends but I’ve since been able to rebuild those relationships and I now have a good group of friends who understand if I need to altar or cancel plans if I’m not feeling the best.
Would you say it has affected your goals in life? If yes, in what way?
When my CFS was bad to begin with, I was missing out on a lot of school during my first year at sixth form which meant that I didn’t reach the best of my abilities when it came to my AS exams, I was lucky that I was able to achieve the grades I wanted in the following year after taking a couple of the exams again though. I think that’s the only time my condition has affected something I’ve wanted to achieve.
Would you say it has negatively affected your mental health? If yes, how has your experience been with that?
Yes definitely, it still does occassionally when I have flare ups and when I have bad days. I have quite bad anxiety due to other things anyway so I feel like my chronic fatigue adds to it when it’s bad. It can result in me feeling quite low sometimes if it stops me from doing the things I want to do. It’s not something I’ve found easy to talk about but I’m working to improve on that and hopefully I can open up more to people.
What lifestyle changes have you and people around you had to make to accommodate your condition(s)?
I’ve had to alter plans with friends in the past, whether it be by them coming to me instead of going out or not spending as much time when we go somewhere, I’m lucky that they’re incredibly understanding though and are willing to make any changes in order to accommodate my needs.
Last But Not Least
What are the main things you’ve learned through having your condition(s)?
That it’s incredibly important to put yourself first and prioritise your needs. I used to feel so guilty if I cancelled plans with friends or when I wasn’t able to go to school because I felt like I was letting people down and because I felt like that, it made me feel even worse. I’ve now learned the importance of putting myself first, not in a selfish way but in terms of my health and wellbeing, it’s so important.
My vision impairment has also taught me a lot but I could go on forever about that and it’s something I talk about quite often on my blog.
Do you have any advice for newly diagnosed people with your condition(s) or a long-term illness?
Talk to people about it, especially people who might be in a similar situation to you, it’s so incredibly important and makes you feel less alone. It’s not something I did for a really long time but now that I’ve found people who I can relate to, it takes a little of that isolated feeling away.
Lastly, tell us something positive that keeps you going. A quote, a song, anything!
‘Everyone wants happiness, no one wants pain but you can’t have a rainbow without a little rain.’
This is a quote I’ve always loved and it reminds me that even though things can be hard, whether that’s because of my conditions or life in general, it doesn’t mean that things will be bad forever.
A huge thank you to Elin for all of her fabulous information about her conditions and helping to educate others. I’m certainly learning a lot of new information from these posts! You can find her elsewhere on these links – Blog / Twitter / Facebook
‘Til Next Time,