top of page
User Name

Finding joy from bed

Living with Severe ME

Hi, I’m Katie (@katie_andm.e), I’m 17 and I live with severe ME. Since birth, I have been easily susceptible to infections and viruses. At 13 I caught shingles and never recovered. I was diagnosed with Myalgic Encephalomyelitis, an illness affecting many systems causing a wide range of debilitating symptoms. Doing too much can cause huge setbacks due to the lack of energy production at a cellular level. There are no treatments, only pacing which is the act of staying within your energy limits. My illness fluctuated, at times managing full-time school, at others unable to attend at all. Things were running normally until September 2020 when, after finally managing to start horse riding again, I fell. Whilst there were no severe injuries I experienced a lot of soft tissue damage. My body was left unable to recover properly due to the ME as well as worsening existing symptoms. I lost movement, muscle strength, and feeling which I’m still slowly building. I spent 7 months in the hospital, the last 4 were completed on a neuro rehab ward learning movement. Unfortunately, due to a lack of understanding of ME, I was pushed too hard. My illness became even more severe. Since leaving the hospital I’ve been able to pace more in a better environment and find professionals who truly understand the illness and realize the evidence of an organic disease. This has helped me know what’s happening and what I should do. I’m rarely able to get out of bed, due to the illness, its symptoms, and lack of an appropriate wheelchair. I can’t sit upright, stand or walk. There hasn’t been tremendous amounts of improvement. I’m still reliant on full-time care and need help with most tasks. I can’t leave the house, I haven’t since coming home in April 2021. But I’ve adapted life to still do things I like. I appreciate the little things. I find joy in myself. This picture is not my every day, you can find me in the same room with the curtains closed alone doing some simple crafts. I’m sharing my journey on Instagram educating about ME and its debilitating reality. I am meeting amazing people and hopefully helping some feel less alone.


4 views0 comments

Comments


Collapsible text is perfect for longer content like paragraphs and descriptions. It’s a great way to give people more information while keeping your layout clean. Link your text to anything, including an external website or a different page. You can set your text box to expand and collapse when people click, so they can read more or less info.

Country:

Author:

Katie

More stories by this Author

Life is beautiful and the power of people is unstoppable!

Andreea Lichi

Read More

Accomplishing my dreams with cp

Andreea Lichi

Read More

Healing is happening- what is wrong with me?

Andreea Lichi

Read More

Healing is happening- what is wrong with me?

Andreea Lichi

Read More

Healing is happening- what is wrong with me?

Andreea Lichi

Read More

Related Service Provider

I-WHEEL
Apache Adaptive Solutions
People's Parking Limited
Living Well at Home Ltd
iansyst Ltd
British Blind Sport

Realated Products

Skil-Care 3 Foot x 4 Foot Sensory Foam Crash Pad

Green Chewy Tube (Knobbly)

Red Chewy Tube

Chewy Tubes - Yellow

Chewnoodle Blue Bumpy

Bumpy Chewnoodle - Red

More Products
Combot
Userway

Daily living and Mobility

Outdoor Activities

Finding joy from bed

Hi, I’m Katie (@katie_andm.e), I’m 17 and I live with severe ME. Since birth I have been easily susceptible to infections and viruses. At 1