Hello loves :)
I get certain comments that make me feel that this is a necessary thing to show you all, especially as the whole point in the big give away is to raise awareness of M.E, and in particular, Severe M.E
Pretty photos can be misleading, but photos can also give you insight, you cannot always get the full extent of things, that is for sure. Yet I'm hoping for this to give people a bit of a peek into the world I live in 24/7
I've slept for like 23 hours before, imagine sleeping for that long, or for 0 hours and hardly feeling any different.
Severe M.E is real.
This is a piece from an Amazing book called Severe M.E - A guide to Living.
Severe ME is a devastating condition which affects tens of thousands of people in the UK. Many are bedridden and require constant care. They have a complex range of problems (often including loss of movement, speech and the ability to eat) as well as difficulties with basic day-to-day tasks such as washing and toileting and a huge number of extreme symptoms (such as pain, muscle problems, sensitivity to light, sound and touch, flu like malaise, gastrointestinal disturbance, cognitive dysfunction, sleep disturbance, dizziness and paralysis). Patients, loved ones and professionals can be left feeling frightened and totally helpless in the face of such immense suffering. “Severe ME/CFS: A Guide to Living” can change that.
- I haven't been able to swallow food/water/most things for nearly 6 weeks
- I've not had a period over 3 days where I haven't - Had a virus, Coming down with one, or Recovering from one in about 2 years.
- I've lost my education to this disease, I haven't lost friends because I have amazing people around me but I've lost the opportunity to have a normal social life for , basically ever, but specifically the last 2 years
- I haven't been able to walk for probably 2 years, I can't remember the last time I took a step. A camera isn't always the truth, I do things to purposely disguise my illness.
- My friends are all going off to Uni, Going Travelling, or Climbing the ladder in their careers, and I have to fight for funding to go to somewhere no one wants to go : Hospital
- I faint a lot when I try to sit up, I have convulsions, I can barely hold a small cup , I go into paralysis for weeks at a time, and the pain I experience is beyond words.
- I am trapped inside four walls and all I want is to be free.
|How most or all of the day has to be spent if you have severe M.E|
|This is an example of how low down in finctioning a person with severe ME can get, it's not easy reading,and I've experienced pretty much every single one of these, as have thousands of other children, teens and adults.|
|0%||Severe symptoms on a continuous basis. In bed constantly, feeling extremely ill even with permanent rest. Severe dizziness makes it almost impossible to be propped up in bed for longer than a few minutes at a time. Light and noise are very painful to the eyes and ears - curtains are closed and earplugs are needed. Severe pain almost anywhere in the body with the skin feeling very cold and extremely sensitive to touch. Unable to care for oneself at all; washing needs to be done a tiny bit at times throughout the day. Nausea and severe fatigue make eating extremely difficult. Liquid based food preferred - little and often. Occasionally, nasal feeding tubes are required when the energy to chew is completely spent. Any stimulus worsens the feeling of being severely ill, with no movement in the bedroom preferred. Any visitor to the room is almost impossible. Talking, even to the carer/family, is often impossible. This is often misread as being 'selective mute'. Severe adrenaline rushes felt with heightened sensitivity; jumping and over reacting to doors shutting/door bell ringing, etc. Sleep pattern often completely reversed.|
So Please, please, help to raise awareness, and funds for M.E Charities, donating your time for a video or blog, buying a pendant or buying the charity single , I would really appreciate any of these, but most of all I appreciate the emails, letters and formsprings I get that encourage me to keep going. Which have lulled recently, and I miss them a lot.
It's obviously hard to write this, it's hard to show these pictures and I hope people understand that I'm doing this to raise awareness and to help others who do not have the resources/help to blog or write about their experience.
I was well under the 5% mark as a kid, no one should have to be there.
Do your part to make this stop (: for ever
This is Daisy's video with my song on, and you might spot me in the photos too ;)
ME stands for Myalgic Encephalopathy (My-al-jik En-kefa-lop-athy)
I want M.E to stand for Malody Ended
"I only ask to be free, the butterflies are free"
I love you all very much x