In Memory of Ian Rudd 1977-2018

[Countrygirl]

https://allaboutmye.wordpress.com/2018/04/03/about-ian-rudd/

He is an extract from the blog.

ABOUT IAN RUDD.
My cousin Ian Rudd died in April 2018. Paramedics were called in the early morning and were unable to resuscitate him. This is an edited version of a blog I wrote for severe ME Day in 2015 while Ian was still alive. He suffered from a cruel disease called myalgic encephalomyelitis that eventually killed him.

In 1995 my cousin Ian was a positive, happy outgoing young man who was studying a degree in Fine Arts at a London university.

He didn’t have an acute onset to his disease. His GP told him he had Post Viral Fatigue Syndrome. Ian felt sick and fatigued but tried to “push through it” for five years.

He went for long walks to try and prove to himself he wasn’t ill. He had to cut down his days at university – first five days, then four, three, two and finally one – because he had to rest the other days to build up enough energy to go in. Finally, he couldn’t make the journey.

He became bedridden and finally got a diagnosis of M.E in 2000.

Despite his severe disablement he remained cheerful and positive about the future – teaching himself calligraphy, chairing an internet forum on poetry and doing activities from his bed on the days when he could manage it.

In 2011 he had a few months when he had difficulty in swallowing and could hardly eat or drink.

In the summer of 2012 he had the same problem again. He was taken to hospital, rehydrated and sent home as some tests carried out showed nothing abnormal.

A week later he went unconscious and was rushed into hospital. A nurse asked his mother if he would want to be resuscitated. She said yes.

 

[Sushi]

@Countrygirl we could move this to the In Memory of section if you think that this would be appropriate.

 

[perrier]

Sweet sweet face you have Ian. I am so sorry to read of this kind of suffering. Rest in peace.

Something is very wrong in our world when story after story of ME suffering does not engender urgency in govts and in a wider swath of researchers and doctors.

 

[SilverbladeTE]

Sweet sweet face you have Ian. I am so sorry to read of this kind of suffering. Rest in peace.

Something is very wrong in our world when story after story of ME suffering does not engender urgency in govts and in a wider swath of researchers and doctors.

we have been DELIBERATELY painted as "the underserving sick"
to exterminate and/or abuse a people, vilify them first, best of all make it look like they are conning the Public, no one will support a person who makes them look a fool....
so we've been victims of a very effective, large-scale, very subtle PR campaign
and who knows very well what buttons to pull to make people hate? Psychs....

 

[boolybooly]

Poor Ian and his family, I wish them the best at this difficult time.

Nevertheless I think it has to be noted that in his case there is good reason to suggest medical mismanagement contributed significantly to his difficulty and even his death. I hope it can be brought to the attention of relevant authorities so that we can learn from it how not to manage severe ME.

A week later he went unconscious and was rushed into hospital. A nurse asked his mother if he would want to be resuscitated. She said yes.

Ian was transferred to the intensive care unit.. He needed a tracheotomy because he could not swallow and had to be tube fed.

The doctors and nurses had no training in M.E. The consultant in charge of the ICU said he had never heard of Severe M.E. before. He said: ”Why have I not heard of this before?”

Then Ian was put on the ward. His mother was worried that his care needs would not be met as no-one seemed to understand the severity of his M.E.

He was left unattended and his tracheotomy became blocked. He went into cardiac arrest and suffered clinical death for seven minutes before he was resuscitated.

Because of brain damage he suffered hallucinations and lost most of his memory of the last few years. He woke up each day not understanding why he is in so much pain.

He was given a care package of a hospital-style bed and carers coming in each day.

The carers were untrained in M.E. They had to be taught about his extreme sensitivity to any movement and sound. Often he was too unwell to receive them. The burden of care fell on his mother who also has ME.

Ian was one of the 25% group of very severe M.E. patients who are bed bound and isolated by the illness. He is one of thousands of those whose stories are rarely heard. Thanks for reading.

 

[Nanni]

Sweet sweet face you have Ian. I am so sorry to read of this kind of suffering. Rest in peace.

Something is very wrong in our world when story after story of ME suffering does not engender urgency in govts and in a wider swath of researchers and doctors.

I agree. I’m so sick of the medical community. They should be our alliance. I was a psychotherapist and I understand compassion fatigue. Maybe I erred to far in the caring and now i may be sick because I didn’t take better care of myself but I’m glad i didn’t become emotionally unavailable for my clients. I’m so sad for what Ian endured and for all of us trying to get well with only each other to depend on for guidance. It’s a crime. Your free of your body Ian and I’m happy for that. I’m so sorry for the loss your loved ones have to go through.

 

[perrier]

I agree. I’m so sick of the medical community. They should be our alliance. I was a psychotherapist and I understand compassion fatigue. Maybe I erred to far in the caring and now i may be sick because I didn’t take better care of myself but I’m glad i didn’t become emotionally unavailable for my clients. I’m so sad for what Ian endured and for all of us trying to get well with only each other to depend on for guidance. It’s a crime. Your free of your body Ian and I’m happy for that. I’m so sorry for the loss your loved ones have to go through.

Dear Nanni

This is one of the most severe illnesses imaginable; it is antithetical to life; and yet, all we have in a couple of dozen specialists working on this. I am beside myself watching so many young people suffer so horrifically.

 

[Diwi9]

I agree. I’m so sick of the medical community. They should be our alliance. I was a psychotherapist and I understand compassion fatigue. Maybe I erred to far in the caring and now i may be sick because I didn’t take better care of myself but I’m glad i didn’t become emotionally unavailable for my clients. I’m so sad for what Ian endured and for all of us trying to get well with only each other to depend on for guidance. It’s a crime. Your free of your body Ian and I’m happy for that. I’m so sorry for the loss your loved ones have to go through.

I have been mad at the medical profession, but I am not mad at them anymore. There are good doctors, there are compassionate doctors. There are also jerks. I believe most fall between the two...just people trying to make a living that don't want to get into trouble. If you look at our illness...they are not educated about it. The federal agencies in the US have given confusing signals over the years about it. As a psychotherapist, you must realize the cognitive dissonance involved here...it is so much easier for a doctor to dismiss us as psych patients, rather than take the lead. The tide is changing and we need to reach a tipping point for it to do so. At this time, it seems that for the most part, researchers and specialists in this illness have family members touched by it. Obviously the problem is with education...and the lead in misdirecting education has been our federal agencies. Most clinicians will come around as soon as the CDC and NIH start being assertive about the biological basis of this disease.