M.E Awareness Day - Invisible Illness Questionnaire

So today is International M.E Awareness Day! People from all over the world are spreading the word about M.E and the devastating affect it has on the lives of its sufferers. One of the biggest battles we face is the face that M.E is an invisible illness - most of the time you can't see what is wrong, there is not lable that plasters itself across your forehead letting the world know you're ill. So we face the battle of lack of understanding because to the rest of the world we look relatively normal. To understand more about invisible illnesses, please read this quiz, thank you <3

 1. The illness I live with is: M.E/CFS – Myalgic Encephalopathy/Chronic Fatigue Syndrome

 2. I was diagnosed with it in: May 2006

 3. But I have had symptoms since: September 2005

 4. The biggest adjustment: Going from being a huge top of the class geek to a drop out with 5 GCSEs, losing friends and a social life, having to put my life on hold and give up my passions such as music. Having to use a wheelchair to go out the house.

 5. Most people assume: From looking at me that I’m probably perfectly healthy, even when I’m in my wheelchair I can tell people are confused by the fact my legs move, and I look fine.

 6. The hardest part about mornings are: Not knowing how I will feel, or waking up and feeling horrendous. Waking up and not being able to keep my eyes open, my limbs feeling weighed down. If I haven’t had a good night’s sleep then mornings hit me even harder. When I suffered from nausea I would dread mornings because I struggled to eat at that time of day. When I was on my highest dose of sleep medication, morning would be a complete blur because of the groggyness it caused me, I wouldn't be able to speak for hours.

 7. My Symptoms: Severe exhaustion made worse by any sort of activity, muscle pain and weakness, joint pain, difficulty concentrating and poor memory, noise sensitivity. In the past (and possibly will crop up in the future) I’ve suffered from severe headaches, sore throats, dizziness, nausea.

 8. A gadget I couldn’t live without is: My laptop and my phone as well as my ipod touch. It’s how I keep in touch with the world, my friends and find fantastic help and support.

 9. The hardest part about nights are: Getting to sleep. I never know if it will take minutes or hours, or whether I’ll wake up in the night possibly multiple times, even if I’ll get any sleep at all.

 10. Tablets a day: One amitiptyline tablet, down from 4 amitriptlyine tablets this time last year though! Painkillers if something hurts. Sometimes vitamins and supplements.

11. Regarding alternative treatments: I haven’t tried any. I’m generally a sceptic when it comes to people who want all your money for no guarantees, but some things work for some people and I’ve seen friends make improvements from alternative treatments, so I wouldn’t rule them out completely.

 12. If I had to choose between an invisible illness or visible I would choose: Neither ;) but a visible illness would be easier, even in my wheelchair when people can see what something’s wrong, they don’t understand why I can move my legs and why I don’t push myself. I want people to give up their seats when my legs can’t hold me up but no-one would even consider it looking at me.

 13. Regarding working and career: Ha! I have no prospects ;) I am lucky to have the GCSEs I have, I had a supportive school and a wonderful home tutor. At the moment I do 2 volunteer jobs for AYME which I love and it’s my first experience of working. I dread the day I have to start looking for work, because I don’t want to live off benefits forever, but I have so little experience. I’ve never had a paid job. Even if I knew what I wanted to do as a long term career, I have such a long way to go.

 14. People would be surprised to know:  I’m actually a happy, positive person! I enjoy life because I’ve learnt how to make the most of what I have, and so the tiniest things mean even more to me. I think back to the days I was completely bedbound and unable to walk, and see how far I’ve come and appreciate all the things I can do now. But that behind that mask, I am suffering every single day.

 15. The hardest thing to accept about my new reality has been: Losing friends, becoming so isolated and having to give up my education. My health has to come first, which I have accepted, but it was a hard lesson to learn.

 16. Something I never thought I could do with my illness that I did was: Meet new people! I’ve made some fantastic friends over the years who will be friends for life.

 17. The commercials about my illness: There are none. Raising awareness of M.E is down to the charities and sufferers themselves and it’s an uphill battle all the way.

 18. Something I really miss doing since I was diagnosed is: Playing the flute, playing in bands and orchestras. Nowadays I can’t even hold my flute for long and get out of breath after about 10 minutes. I miss going out with friends more often, going on holidays (haven’t been on holiday in 5 years). Being able to go out whenever I like without worrying about the consequences.

19. It was really hard to have to give up: 6^th form. I had to make the decision that I wasn’t going back, which meant abandoning my A level (singular, I only took one subject) and therefore giving up hope of university, for the mean time anyway. I’d always done well at school, and I always figured I’d do well and go on to university, so it was a big shift in my life plans.

20. A new hobby I have taken up since my diagnosis is: Writing, I started a blog this year. Also writing letters, I have lots of lovely pen-pals. I love listening to audio books, which came from being too ill to read.

 21. If I could have one day of feeling normal again: I would go and visit my best friend at university and do normal best friend like things!

 22. My illness has taught me: That the small things matter the most, sitting out in the fresh air, spending time with family etc. And that I am lucky to have every moment, however bad things are it could be so much worse. It’s taught me who my real friends are and given me new friends. I am more positive than ever, and enjoy each day to the fullest because I never know when things will be snatched from under my feet again. On a negative side, it’s taught me that not everyone is understanding, that there are still people out there who are ignorant when it comes to this illness.

 23. Want to know a secret:  I may be ill but I am still an actual person, with a personality and I enjoy life. I am still a 20 year old girl who likes to have fun, even if my fun has to be limited.

 24. But I love it when people: Talk to me! Make the effort to get to know me, ask me about my illness and then say that they’ve learnt something new from talking to me.

 25. My favourite motto, scripture, quote that gets me through tough times is: “Everything happens for a reason”. I got ill and made new friends, who I would never have known if I hadn’t.

 26. When someone is diagnosed I’d like to tell them: That there are people that understand and you are most definitely not alone!  The M.E community is one of the best online communities there is, that there is a future for people with M.E. You can make friends and enjoy things. And rest, always rest. Rest, rest, rest! Don’t risk you’re health, put it first and look after yourself.

 27. Something that has surprised me about living with an illness is: That some people really couldn’t care less that you’re ill, and those people aren’t worth keeping in your life. That new friendships can come out of something like this.

 28. The nicest thing someone did for me when I wasn’t feeling well was: So many nice things! People have sent me cards full of messages when I relapsed, and post when I’m having a tough time. My sister goes out of her way to make me laugh, she looks after her big sister, and she was brilliant when I was bedbound. When things are hard and people pass on well wishes, people I’ve barely even spoken to.

 29. The fact that you read this list makes me feel: Happy that you’re willing to spend the time and energy to hopefully learn something about M.E!

 30. Something I want people to take away from this: M.E is an invisible illness, one that has upturned my life and made me have some particularly tough times. That when I say I’m fine, I’m probably not. But that I’m still a person beneath it all who wants to be happy and get on with things the way anyone does. I want people to be understanding, helpful and accepting. Living with this illness already makes my life tough, and every day a battle. I don’t want to have to battle ignorant people as well on top of all that.

Thanks for reading! :)

Sarah x