Severe ME Awareness Week: Forest’s story

August 8, 2021

My name is Forest Lewis, I’m 35 and 3 years ago almost to the day, I lost my vision, collapsed and became very unwell for weeks, I had surgery on my throat and also had contracted Epstein-Barr Virus (EBV) and cytomegalovirus (CMV). Since then, I have never recovered and rapidly gone from moderate to severe ME during the pandemic. I was once an active tattooist with my own shop, into extreme sports and travelling the world. 

Now the symptoms including chronic pain mean that I now spend my days travelling from the bed to the sofa and back and observing the world through a window. How I feel about being housebound… it’s heartbreaking I feel like I’m staring out into the wind and mourning the life I used to have, I genuinely feel as though I have died some days as I lay on the sofa, just someone forgot to turn the lights off.  
It’s soul destroying watching my fiancé, take our daughter out to for activities and I can only be sent pictures. It’s horrible to watch her run around clean the house and go out to do all the shopping and all I can do is lay there. Perhaps some days I can crawl around on my knees and help pick up my daughters' toys. I used to have so many friends and now I’m lucky to see one once a month if they pop by, I’m either too unwell or they just have no idea why I dropped off the radar.  

Recently I got a wheelchair which has meant I am able to leave the house with help for a couple of hours a week. Being able to get out on the odd occasion with the help of mobility aids means the world to me, just to watch my daughter run around a park and perhaps feel like a family again as opposed to an obstacle at home. 
But the struggle continues……

ME Connect

The ME Association understands that this illness is extremely difficult to deal with on a daily basis and would like to encourage anyone needing support including family members to call our helpline available 365 days a year to speak to someone who understands.   

0344 576 5326


If you feel distressed and need help outside our helpline hours, please reach out to speak with the Samaritans on their free helpline – call 116 123 

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