It’s Chronic Confessions time again and today we have Jenni of Gluten And Me talking about her life with Chronic Fatigue Syndrome/ME. Jenni wanted to stay faceless so todays post will be a lot more word focused but I’ll throw in a few pictures for good measure. Hope you enjoy!
I’m from Oxfordshire, am 18 years old and have just finished my A levels. Hobbies that I enjoy are dressage. I’ve been horse riding since the age of 5 and absolutely love it! Unfortunately, I cannot ride as much as I want as a result of my CFS. I’m also a member of Young Farmers and enjoy the activities and people I meet through this organization. I also help on our family farm and own my own sheep! I am also a gluten free blogger as I also have coeliac disease.
I have coeliac disease as well as chronic fatigue syndrome. In 2014, I became very unwell and was vomiting multiple times a day, was bed bound and exhausted constantly. After two years, I was diagnosed with coeliac disease after undergoing lots of tests – ultrasounds to rule out masses in my stomach, barium swallow & x-ray to make sure I didn’t have any blockages, a brain MRI scan to ensure my brain was functioning normally and an endoscopy to rule out stomach cancer and eventually diagnose coeliac disease.
I then completed my GCSEs and started my A levels that September. I felt a lot better but was still exhausted. My GP gave me vitamin D tablets and told me that should solve my issues. Unfortunately, it didn’t! During my A level exams April/May 2018, my GP suspected I had chronic fatigue syndrome so I was referred to a specialist. In September 2018, it was confirmed I have chronic fatigue syndrome.
Looking back now, I have had symptoms for years! But it impacted my life the most since 2014 – diagnosis took 4 years and I was diagnosed at the age of 18.
I was relieved that there was a name and a reason for how I was feeling, however, it was also very disheartening as there is no cure and I just have to manage it.
I still have some health issues so it is a possibility that I have undiagnosed conditions.
My main symptoms are extreme exhaustion and heavy / sore legs. It is said that you can describe the feeling of CFS as it feels like your worst hangover and the worst flu at the same time. I also have other more minor symptoms such as sensitivity to heat, pins & needles in my arms and legs, headaches, dry throat, sleep disturbance and struggling to fall asleep. I also don’t feel refreshed when I wake up. I often feel dizzy when I stand, have stomach sensitivities, have an alcohol intolerance, and have stomach cramps after eating when I am at my worst. I get freezing hands & feet and struggle with brain fog. I can get heavy eyes and struggle with bright lights.
I don’t get all of these symptoms all of the time, but I have learnt to live with them and adapt to cope. If I don’t manage my condition correctly I can experience a ‘crash’ where I’m bed bound and am very badly affected by my symptoms. However, if managed correctly the symptoms are minimal and have less of an impact. Although, I do adapt my life to live with my symptoms, for example, I have to plan activity and ensure I have rest days in between to allow for recovery; I don’t go out a lot and have had to give up going to the gym, doing netball and working on the farm a lot.
It is suspected it is triggered as a result of a stress. The suspect my stress was the prolonged illness as a result of my undiagnosed coeliac disease at the time.
I had to undergo the testing process for my coeliac disease – ultrasound, barium swallow & x-ray, brain MRI scan and an endoscopy. These were difficult to have to go through but I knew in the long run it was for a benefit.
Activity makes my condition worse. I have to limit everything I do and ensure I have plenty of rests.
My family and friends are amazing!! They don’t all understand it but do try their best.
It has made it harder to meet new people and to sustain relationships as my activity has to be limited. At the age of 18, I cannot always do what typical 18 year olds do!
Definitely! I started a full-time apprenticeship this September but had to resign after only two weeks as a result of ill health. I experienced a crash and had some of the worse symptoms I have ever had. I was bed bound for around 9 days. I knew I would never be able to manage at university so that’s why I went down the apprenticeship route.
It is a struggle and at times it definitely gets you down but I’ve learnt that being negative about it doesn’t achieve anything so I try to be as positive as possible!
I have had to go out less, go riding less, give up the gym and not work on the farm as much. I’ve also had to change my job and whole career plan, as well as ensuring I am socializing as it can be difficult especially when my friends are all at university. I also have to plan to go out for a walk everyday to help build myself up and ensuring I am getting out the house. My parents are also financially supporting me at the moment which I am VERY grateful for.
I want people to know that it is a life-long condition that we have no real control over. We aren’t being lazy or bringing ourselves down, we’re just ill. No matter how hard we try and manage our condition, sometimes it just doesn’t work.
Try and be as positive as possible, I know it is tough!
It could be worse! I’m alive, I’m talking, it could be worse!
Such a huge thank you to Jenni for sharing the story of her journey with us today! Here are a few social media links for her if you’d like to connect or follow her elsewhere! Twitter / Instagram / Facebook. You can check out the last instalment of Chronic Confessions here and if you’d like to share your story and take part in the series, pop me an email on firstname.lastname@example.org and I can send you over the questions.
’Til Next Time,