Story 4: Helen Donovan

“Alem Matthees has been unwell since 1995 after he contracted the Measles, he was 15 years old. He never felt well after that but went on to finish high school and to work in IT support at a law firm. After two years he had to resign and so began a long and difficult road to find out what was wrong with him.

In 2001 he was diagnosed with ME/CFS and he continued to decline. He underwent many tests which all proved to be inconclusive. The difficulty in finding a doctor who would even deal with him was extremely stressful.

Alem has now been completely bedridden for 6 years, 24 hours a day. He has not uttered a word for 5 years, he cannot walk and has a commode in his room that is 3 steps away and he can only just manage that.

He cannot shower, and his mother has to change his clothes, cut his finger nails, cut his toenails, clean his commode, and cut his hair and beard.

He can no longer brush his teeth, his eyes remain shut as he is unable to tolerate light, wears ear plugs as he cannot tolerate sound. He is unable to be hugged by anyone as he can’t tolerate touch. His room is in total darkness and has been made sound proof and light proof.

He cannot swallow solids and has smoothies made with supplements. His weight has dropped dramatically and is now skin and bones. He can sit up in bed to swallow his smoothie and can only have a very limited amount so has to be fed every 2 hours except when he goes through a sleep cycle.

His lips are swollen and extremely sensitive, his skin is sensitive and he now has a condition called Pellagra which covers a large part of his body, he has brown discoloration on his skin and it  is extremely itchy, Pellagra can be life threatening.

The eyebrows, cheeks and face in general are extremely sore.

He has constant muscle and joint pain and finds it very difficult to get comfortable in bed.

ME/CFS can bring on other medical conditions and because he can no longer walk he now has granulation on both his large toes and had to have one toe nail removed! He really needs to have the other removed but cannot undergo the pain again so his mother has to clean and dress his toe constantly.

There is the constant worry of developing bed sores because of spending his entire life in bed!

Alem has constant headaches, gut problems and cannot tolerate the smell of perfume, cleaning agents or any other smells.

His diet has become very limited as he has developed intolerances to so many foods and medications over the years. He has tried many diets to no avail.

Alem has undergone many blood tests, urine tests, salvia and stools tests, CT scans, MRIs, endoscopy’s with no conclusive results.

Due to these factors there are few doctors who will even attempt to take people on as patients so they have the added stress of finding a clinician who will prescribe pain medication etc.

Alem is unable to attend a doctor’s appointment and now requires a home visit by a GP and this presents problems as very few doctors will do this. There desperately needs to be a change in how house bound patients are treated with conditions that prevent them from leaving home.

He has no social interaction now and has no friends. The only contact he has is his mother who cares for him and carers who come to the home. His father visits and cares for him on a weekly basis.

Alem is unable to communicate on a mobile, laptop or any other device. His mother checks his emails once a day and briefly tells him of the messages he receives.

Years go by and yet there is very little understanding of this disease and very little funding.

Alem feels he is hopelessly trapped in his body and at times wishes his life to end. Suicide is a constant thought for some patients as they are no longer given any hope and the stress on family member is extremely high.

This what severe ME/CFS is and seeing a person in this state is extremely confronting and dealing with it as a parent is soul destroying!!!

Alem has a loving and devoted family who refuse to give up hope!”