To be fair, it makes no difference what you call it, the fact remains that they are sick, their lives are restricted and they are not able to live their life the way they would like to. Instead they have to choose each day how to spend their limited energy resources and work within those confines. Also, as with most sufferers, they have other health issues to contend with too.
So, in a bid to try and help raise awareness about chronic illnesses both girls have completed this “Chronic Illness Challenge”. Originally it was designed as a instagram or facebook challenge and the idea was to answer a question a day for a month. However, for someone who suffers from cognitive issues this isn’t always possible and there may be days go by when typing or texting isn’t possible. Which is why the girls decided to take their time and compose a blog post to have it posted altogether as a comprehensive post about their specific journey with this illness.
I have had these illnesses ranging from childhood to the most recent diagnosis which was 5 years ago.
Day 2.How have these illnesses affected your life?
Day 3.How did you get a diagnosis?
Originally we assumed it to be glandular fever because of my glands being so swollen and my initial symptoms were text book glandular fever, I had had 10 cases of tonsillitis already running up to it and had spent almost all of 2010 off school sick. When I didn’t get better and after lots of tests coming back negative it was obviously thought to be ME by the GP. I got a proper diagnosis in January 2011 from the hospital.
Day 4. How have your friends and family reacted to it?
Obviously it was sad to see me become so ill after being so well, I could barely see my friends for any longer than half an hour. Also, we had next to no knowledge of the illness so everyone was trying to push me and get me back to normal more than anything.
Day 5. How does being chronically ill make you feel?
Day 6. If you could have told yourself something when you first remember these symptoms arising what would you have said?
If I could, I would’ve told myself to not push myself into doing things too soon. Trying to go into school and doing exercise just prolonged recovery and messed up my back.
Day 7.What was the biggest realisation you have had?
The biggest realisation isn’t for myself, but so many people take things for granted. They complain about school, dance, and a simple headache when they could have things so much worse, if people come to me saying they have a sore throat, I really won’t have any sympathy, they should try living with ME.
Day 8.Where do you see yourself in 5 years time?
In 5 years I see myself in college doing a media course, I love editing and the media is a huge interest that I have.
Day 9.Have you ever tried any alternative therapies? If so, what? Did they work?
Day 10.What little things make your life easier?
Day 11.Why do you believe you have this illness? Bad luck, a higher power or something else?
Day 12.Briefly explain to a healthy person what it is like to live with this illness.
You always feel fatigued and ill no matter what you’re doing, you always feel sleep deprived and in pain, basically like a zombie that ‘doesn’t look like a zombie’.
Day 13.Has your physical illness had any effect on your mental health? Explain.
Day 14.Give 5 things you are grateful for.
- My bed
- My PC
- My ipad
- My boyfriend
- My family & friends.
- My family,
- My dogs,
- The health care we receive,
- My osteopath (I always email her whenever I have a new symptom because she has ME herself and knows how to help usually).
- My bedroom. Weird thing to be grateful for, but we decorated it specifically to be a calm environment for me to rest.
Day 15.What would you say to people newly diagnosed with this illness?
Day 16.What is your favourite inspirational quote?
“Not all those who wander are lost”
Cobain once wrote “Art that has long lasting value cannot be appreciated by majorities , only the same small percent will value arts patience as they have always have. This is good.”
“I have met many minds able to store and translate a pregnantly large amount of information, yet they haven’t an ounce of talent for wisdom or the appreciation of passion.”
Day 17.How would things be different if you weren’t ill?
Day 18.Do you think you have become a better person through being ill? Explain.
Day 19.How do you feel about the future?
Day 20.Have you met anyone with the same illness? Did it help?
My sister has M.E. and became ill 2 years before me, which does help me to have her around to talk to.
Other than my sister – I’ve met a few but the only people who have helped are people my mums age because they’re more experienced and are willing to share what helps them. They’re all very sweet and go out of their way to help someone.
Day 21.What networks or websites have you used for support or information about your illness?
Day 22.How do you feel you have been treated by the medical system? Explain.
Day 23.What do you say to yourself when you need a pep talk?
I don’t give myself pep talks or really talk to people about my illness or my personal problems, I don’t like people in my business.
Day 24.How have you managed to juggle your social life through your illness?
It’s hard because I go weeks without seeing some people, but mainly it’s alright. I tend to stick to seeing people who I’m really close to alone and then the rest in big groups.
Day 25.Name 5 activities you have managed to pursue while being ill and 5 activities you have done that you wouldn’t have pursued if you hadn’t become ill.
Editing, I’m not a good singer really but singing, I used to love painting and I still do occasionally, doing make up (special FX) and I can’t think of a fifth. Mostly just editing but that’s an important one.
Day 26.What impact has this had on your friends, family, partner, parents etc?
It’s just made it a bit annoying and difficult, especially when it comes to making plans for a few weeks time because I never know if I’ll be well enough by then.
Day 27.What’s the most helpful advice you have had?
Mostly just the pacing that has helped me, pacing is hard to get the hang of but once you have and know your limits it really helps. Also, forcing yourself to only sleep at night, if you can, helps.
Day 28.Name 5 things you have achieved despite your illness.
- Discovered love of art and using different mediums.
- Managing to maintain a successful relationship with my boyfriend despite the many challenges.
- Managed to reach max level on World of Warcraft.
- My hair always looks uber brilliant hashtag swag
- Eyebrows on fleeeeeeek
- Doing editing,
- Doing well in English and maths,
- Going back to school via Nisai Academy Virtual School (so can go to lesson when still in bed)
- Maintaining friendships,
- I can’t come up with a fifth.
Day 29.What has helped you cope with the stress of this lifestyle?
Having my own space has helped, when I’m stressed and unwell, seeing people just makes it all 10x worse so it’s nice to be able to go and have some alone time.
Day 30.And finally – starting at your toes and working up to your head, name each part of your body and how your illness has affected it, followed by something you like about that part of your body.
This question is too long to answer, so I’m going to summarise and say which parts of my body have been affected. It’s mostly my back, shoulders, joints and thighs, but the rest of my body can feel very achy and tired at times too.
I am finding that even though I am living with the girls reading their answers makes me incredibly sad for what they are missing out on but also immensely proud of them and how they keep fighting on to try and gain control over their bodies and make the absolute best of the situation they are in. They grasp every opportunity they are able to take and utilise it the best they can.
Bear with me hear if you suddenly think why is she going off topic ~ March heralds the first ever British Heart Foundation DECHOX Challenge. Dave (hubby) scared us rigid in December 2014 by having 3 heart attacks within a fortnight, it was thanks to the excellent care by paramedics, emergency staff and cardiac unit that he is now safely recovering and currently going through the intense cardiac rehab sessions in outpatients twice weekly at the local hospital. In gratitude to them I am taking part in their DECHOX challenge during March but have also decided to split the fundraising between The British Heart Foundation and Invest In ME Research because many ME sufferers also have resulting heart issues due to the illness. Research from whichever corner into both the heart and ME is vitally important in ensuring more lives are saved and treatments, along with new diagnostic methods found.
If you would like to donate to or share our fundraising pages we, as a family, would be enormously grateful. The links are below;
Donations towards British Heart Foundation can be given here;
Donations towards Invest in ME Research can be given here;