Let’s get this show on the road shall we? Myself and Amy over at Living With ME have decided that to start things off, we would both take part in each event to give you guys a chance to get to know us a little better. So without further ado, Here is Amy’s Confessions of a Spoonie.
I’m a 21-year-old UK blogger (Living with ME) and I’m currently studying at York St John University! I have a massive love for cats and dogs and I love Friends (the TV series)! I got glandular fever at the age of 16, and was diagnosed with ME/CFS at 18. I have been on a health & fitness journey for the past two years and despite it taking a long time, I am slowly making progress!
Connect with Me!
- Facebook & My Facebook Page
- Instagram One & Instagram Two
- Snapchat – amysaunders08
1. What condition/s do you suffer from and when were you diagnosed?
ME/CFS – July 2014
2. What are the main symptoms you suffer from?
Fatigue, Muscle Pain, Brain Fog
3. What 3 things have you learned about your condition since being diagnosed?
- There are a lot more symptoms than I first thought, and I’m constantly discovering new ones!
- Nothing is impossible. If you pace and manage your illness well, you can still do the things you enjoy – just not on the same level!
- It can be unpredictable, you could suddenly have a flare up that you weren’t expecting, and then have 3 weeks without being ill at all.
4. In what way has the NHS supported or not supported you?
I have a love/hate relationship with the NHS – at first they were unwilling to accept there was something wrong with me, more than just glandular fever (2 years on) but once I found the right Doctor, I quickly got a diagnosis with ME/CFS. Since then, I have struggled again with finding a good, understanding and supportive Doctor, as most just go on at me about my weight – I’m trying ok!
I prefer to see my private, homeopathic Doctor, who is also a qualified GP, who is both knowledgeable and understanding about me and my condition, and she has also taken the time to get to know me as a person incredibly well too, which I truly believes makes a huge difference.
5. What is the hardest part about your illness, in your opinion?
The fact that it is in invisible – people just see a capable young woman, when in actual fact, there is a rarely a day that goes by where I don’t suffer from at least one symptom.
6. List 3 phrases you hate hearing off other people about your condition.
“But you don’t look ill” – a general, but very common one!
“So you’re just tired all the time?” – people don’t understand that there is a lot more to chronic fatigue than just being tired!
“Oh my brother’s friend’s girlfriend has this and she got better after a couple of years” – maybe not quite so distant, but you get the idea! Each person is completely different, some may get better, some may get worse, some may stay just the same.
7. List 3 things you wish people would say/do instead.
“I don’t completely understand, but I’m really trying to” – knowing they’re attempting to understand, means a lot to me.
“You’re doing really well” – this, coming from someone who is close to me and can see the daily struggles I go through, can really help keep me going, because it reminds me how far I’ve come and how strong I am.
“I’m coming over to help” – it doesn’t matter when or how they might help, just being told they are coming is so nice to hear, especially when you don’t have to ask!
8. Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
I always try to have at least one-third of my day to myself. So whether it be morning/afternoon/evening, I will try to dedicate one to rest. This isn’t always possible, but when I can, it really helps to refresh me and keep me going throughout the day.
9. Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
Blogging! I never thought I would have a blog – it never even crossed my mind but now I can’t imagine life without my blog!
10. What do you do? Work, study?
I currently studying English Language & Linguistics at York St John University and I’m nearly finished my second year there.
11. What are you plans for the future?
Finishing Uni, and hopefully finding some sort of job that I can manage with my illness! Blog wise, I’d love to take more guest posts and continue to grow my Blogging in Bed community!
12. Is there anything you would do differently since being diagnosed, and why?
I would have taken a year out to concentrate on my health – I ended up doing that anyway, but not until after I’d already done 6 weeks at Uni and realised that it was too much for me at that time.
13. Has your illness taught you anything about life?
The people who really care about you will make every effort to understand and support you and your condition – you really do find out who your real friends are.
14. What advice/information do you wish you were told when you were first diagnosed?
It’s not a life sentence, it does not define you, and it definitely doesn’t control you.
15. What would be your main piece of advice for people who has just been diagnosed with your condition?
Don’t believe everything you read on the internet! Be completely honest with your Doctor about your symptoms – don’t play them down at all! And, be open to trying different/alternative remedies as they might just change your life, like homeopathy has for me.
- Make sure you keep your eyes peeled and head over to Living with ME on Thursday 30th March because Amy will be publishing her Partner’s answers to the Outside Looking In event!
- After that its back over to my blog for Saturday 1st April as I’ll be publishing my Partner’s answers to the Outside Looking In event
- Finally, it’s back over to Living With ME for my own Confessions of a Spoonie which Amy will so kindly be posting.
Don’t forget if you want to take part in either of the events you still can!
Blog you later »