I wanted to share this with the forum community. These are words from a carer of a person who lives with very severe ME/CFS.
*** shared with consent***
Carers are really special and such an important part of our community. I hope as a community we can support everyone who is impacted by ME/CFS
What are some of the biggest challenges you face as a carer of a person with severe ME/CFS?
Caring for my son is extremely challenging, he is unable to communicate and suffers from extreme noise, light and smell sensitivities. All care for my son needs to be provided in a very low lit room, with minimal or no noise, making sure that all personal care products, cleaning products are fragrance free.
Another challenge is making sure I can always see the buzzer so I know I will be able to hear if he needs me. Other challenges, knowing that if I make a mistake with his care it will cause consequences that impact his health, not just at that immediate time but can cause a crash that when he does ‘recover’ his baseline health is lower than before.
More than anything, I find it incredibly stressful having to advocate for him at every step, whether it is with health services or social services (Centrelink etc). It is difficult and challenging as this illness is much misunderstood or maligned. I feel so sorry for people with this condition who don’t have supportive family or friends.