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

10am-12noon
2pm-4pm
7pm-9pm

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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