This is a different blog from my usual format. I think it is important to share with you how my daughters lives have been altered by the debilitating disease they both suffer from which is the chronic “invisible” illness Myalgic Encephalomyelitis (otherwise known as ME), Some doctors prefer to call it CFS and then there is now the new name that’s being proposed which is the not so easy to trip off the tongue “Systemic Exertion Intolerance Disease” or SEID for short (ironically spells DIES backwards!).

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.

They have both provided their answers beneath each question to explain how it affects them…

Day 1.   Introduce yourself. What illnesses do you have? How long have you had them? 
I have been diagnosed with M.E. (Myalgic Encephalomyelitis), Hypermobility, Orthastatic Intolerance, Arthralgia, Lacto-Intolerance, Asthma, Depression, Anxiety, Dissociative Disorder, Trichotillomania and Dermatillomania, Skin sensitivity and allergies along with Intermittent paralysis of my legs and pretty bad cognitive issues (have days when can’t read or write, find it hard to remember words or say the wrong words when I don’t mean to).
I have had these illnesses ranging from childhood to the most recent diagnosis which was 5 years ago.

I have ME/CFS, along with a number of things, such as; Hypermobility, Irritable Bowel Syndrome, Orthostatic Intolerance, Chronic Back Pain, Restless Leg Syndrome and Social Anxiety/Avoidance Issues.

I’ve had ME for about 5 years.

Day 2.   How have these illnesses affected your life?

I can’t even begin to describe how they have changed my life. I have missed out on the most important teenage years and my education, lost so many friends and become unable to cope in social situations as well as being in pain 24/7.

They’ve affected my life in a number of ways, I used to enjoy dance a lot and I had to stop altogether, I’ve fully missed my opportunity to experience secondary school and I’ve missed out on major topics via virtual school because we don’t have the money to fund my education in more than two subjects (Maths and English) privately ourselves and we haven’t been given any funding from anywhere else.

Day 3.   How did you get a diagnosis?

After having viral meningitis I never got better and had a severe case of Scarlet Fever and any and every illness going around. I had two CT scans and after many tests they finally diagnosed me as having ME/CFS.

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?
My family have been extremely supportive along with a handful of friends who have stood by me. I couldn’t ask for better people in my life – my mum especially has been absolutely amazing, she is my rock and best friend and I love her.
 
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?
Like shit haha

It’s upsetting that I have this illness because people misjudge me with what I can and can’t do. Recently my good and bad days are very sudden but people tend to judge me on ‘what I did yesterday’. I hate that I’ll never have the experience of school and that I’ve missed out on so many events (including Prom) and haven’t had the opportunity to learn the same amount or have the life opportunities as other people.

Day 6.  
If you could have told yourself something when you first remember these symptoms arising  what would you have said?
Be kind to yourself.

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?
There is a difference between living and being alive.

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?
I can’t say because I just don’t know and don’t want to set my expectations too high and then be horribly disappointed.

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?
I get stuck into my art, it is a form of therapy to me since I use it to distract me from my pain and I get lost in it. Also, if you consider an osteopath to be an alternative therapy I regularly have treatment with my local osteopath who does lymph drainage massage. I can’t live without it now, it helps relieve the pain a little.

I’ve tried loads of different things like QI-Gong (whatever it’s called), going to homeopathy, dieticians, osteopathy, occupational therapy, Physiotherapy, hydrotherapy, pain therapy etc. The only thing that really has worked is osteo and the dietician, I’ve been given a supplement to help me gain weight and the osteo helps with my lymph glands and back.

Day 10.What little things make your life easier?

World of Warcraft, ipad instead of laptop because it’s lighter, beanbag trays and bed table, dairy free chocolate, my ugly little granny shower stool.

Little things like drinking Aloe Vera in the morning and having my own personal space helps. Going downstairs even tires me out so I need a place to have to myself.

Day 11.Why do you believe you have this illness? Bad luck, a higher power or something else?

It’s just bad luck.. If it is a ‘higher power’ whatever it is can fuck off.

I definitely got this from bad luck.

Day 12.Briefly explain to a healthy person what it is like to live with this illness.

There is no brief way to explain this. it is so complicated and affects absolutely everything in my life that it just is too much to explain.
 
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.
Is that a joke? Of course it has, how can you be in constant pain and not become angry/depressed? 
 

Yes, my ME caused me to come out of school at the age of 10 which had given me social anxiety, I’ve been recently going to CBT to help this but was on the waiting list for years.

Day 14.Give 5 things you are grateful for.

  1. My bed
  2. My PC
  3. My ipad
  4. My boyfriend
  5. My family & friends.

  1. My family, 
  2. My dogs, 
  3. The health care we receive, 
  4. My osteopath (I always email her whenever I have a new symptom because she has ME herself and knows how to help usually).
  5. 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?
Fuck off physiotherapy, don’t do GET, look after yourself, focus on getting yourself better and nothing else, education can wait, medical professionals don’t always know best. If you feel poorly rest, please don’t try to push through it.
 

I’d tell newly diagnosed people to NOT go into anything too quickly, to rest and to pace.

Day 16.What is your favourite inspirational quote?

The three I love aren’t exactly inspirational but hey ho

“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.”

 

I don’t have a favourite inspirational quotes..

Day 17.How would things be different if you weren’t ill?

That’s impossible to answer, how am I suppose know or even be able to guess?
 

I’d be doing dance, I’d be very smart, most likely, since I learn very quickly and I’d probably be focusing on school more than anything and not on my illness.

Day 18.Do you think you have become a better person through being ill? Explain.

I couldn’t answer this so I asked my mama and she said “You have grown wise beyond your years, show empathy towards others, are nurturing, caring and compassionate. You appreciate the smallest gestures of kindness towards you and give so much love back in return. This illness has taken so much away from you but it has made you a wiser, more appreciative person who makes the most of what you can do when you can do it.”
 

I think I have, I have become wiser and more mature. Sometimes I feel as if this makes me a bit displaced in my friend group but they’re all lovely and don’t treat me like someone with am illness.


Day 19.
How do you feel about the future?
The future scares the shit out of me.

I’m excited about the future, I know exactly what I want to do and hopefully will be loads better by then.
 
Day 20.
Have you met anyone with the same illness? Did it help?
Not really met anyone else as such with M.E. as it affects everyone differently and it may or may not come with other illness associated with it. I had OT group with other people with ME but they were all affected differently and we didn’t speak to each other.
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?
I have looked at information forwarded from Invest in MEwebsite and The Young ME Sufferers Trust, my mum is active on many support websites and is focused on fund raising towards biomedical research & raising awareness , especially with the Let’s Do It For ME campaign group – so I get information indirectly from her.

Only really Facebook. I’ve tried AYME and other forums but have never really been able to use them daily or even weekly, I don’t have the energy to keep in touch on them and so they just don’t drag me in.

Day 22.How do you feel you have been treated by the medical system? Explain.

I feel very let down as I had to go to a private doctor to get any help and we pay for the osteopath since the hospital doesn’t understand what we need. Everything that helps we seem to have to pay for. The hospital only seems interested in GET and what can save them money. I don’t feel listened to, cared for or supported by the medical system. If I was listened to and given treatment to help my symptoms I don’t think I would be ill anymore, or at least in less pain. 
I think by certain people, like some Physiotherapists, some OT’s and some doctors have been really stuck up, rude and pushy about my illness but others have been lovely. I now am working with a really lovely OT on how to gradually, slowly and safely build up my muscle strength and core.


Day 23.
What do you say to yourself when you need a pep talk?
I don’t say anything to myself, I go to my boyfriend or my mum because I’m a depressing fuck.

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?
Is this question also a joke? My social life depends on my health, but I do go out once in a blue moon.

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.
I can’t specifically answer this question but since being ill I have focused on the arts and use art as a therapy.

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?
How am I supposed to answer that? I don’t know, they haven’t told me.

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?
“Listen to your body, stop before you get tired and rest.”

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.
  1. Discovered love of art and using different mediums.
  2. Managing to maintain a successful relationship with my boyfriend despite the many challenges.
  3. Managed to reach max level on World of Warcraft.
  4. My hair always looks uber brilliant hashtag swag
  5. Eyebrows on fleeeeeeek

  1. Doing editing, 
  2. Doing well in English and maths,
  3. Going back to school via Nisai Academy Virtual School (so can go to lesson when still in bed)
  4. Maintaining friendships, 
  5. I can’t come up with a fifth.


Day 29.
What has helped you cope with the stress of this lifestyle?
Medication 😉

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 is such a hard question for someone with a chronic illness, most of the time every single little part of you is affected but basically every part of my body hurts, every part of my body is affected, my joints, my muscles, my gut, my skin, my eyes, sensitivity to touch, smell, sounds, taste and sensitivity to light. Also, there is the numbingly terrible fatigue.

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;
https://www.justgiving.com/dechox2015-tanyamawer

Donations towards Invest in ME Research can be given here;
https://www.justgiving.com/FamilyMawerForME

Finally, I leave you with this last word from the girls…
x~X~x