A Farewell - Anne's Last Post to the ME community

[Kathryn 1]

lobel.nu/anne.html

Farewell – A Last Post from Anne Örtegren

Here is a short extract:

Farewell – A Last Post from Anne Örtegren

Nobody can say that I didn’t put up enough of a fight.

For 16 years I have battled increasingly severe ME/CFS. My condition has steadily deteriorated and new additional medical problems have regularly appeared, making it ever more difficult to endure and make it through the day (and night).

Throughout this time, I have invested almost every bit of my tiny energy in the fight for treatment for us ME/CFS patients. Severely ill, I have advocated from my bedroom for research and establishment of biomedical ME/CFS clinics to get us proper health care. All the while, I have worked hard to find something which would improve my own health. I have researched all possible treatment options, got in contact with international experts and methodically tried out every medication, supplement and regimen suggested.

Sadly, for all the work done, we still don’t have adequately sized specialized biomedical care for ME/CFS patients here in Stockholm, Sweden – or hardly anywhere on the planet. We still don’t have in-patient hospital units adapted to the needs of the severely ill ME/CFS patients. Funding levels for biomedical ME/CFS research remain ridiculously low in all countries and the erroneous psychosocial model which has caused me and others so much harm is still making headway.

And sadly, for me personally things have gone from bad to worse to unbearable. I am now mostly bedbound and constantly tortured by ME/CFS symptoms. I also suffer greatly from a number of additional medical problems, the most severe being a systematic hyper-reactivity in the form of burning skin combined with an immunological/allergic reaction. This is triggered by so many things that it has become impossible to create an adapted environment. Some of you have followed my struggle to find clothes and bed linen I can tolerate. Lately, I am simply running out. I no longer have clothes I can wear without my skin “burning up” and my body going into an allergic state.

This means I no longer see a way out from this solitary ME/CFS prison and its constant torture. I can no longer even do damage control, and my body is at the end of its rope. Therefore, I have gone through a long and thorough process involving several medical assessments to be able to choose a peaceful way out: I have received a preliminary green light for accompanied suicide through a clinic in Switzerland.

When you read this I am at rest, free from suffering at last. I have written this post to explain why I had to take this drastic step. Many ME/CFS patients have found it necessary to make the same decision, and I want to speak up for us, as I think my reasons may be similar to those of many others with the same sad destiny.

These reasons can be summed up in three headers: unbearable suffering; no realistic way out of the suffering; and the lack of a safety net, meaning potential colossal increase in suffering when the next setback or medical incident occurs.

Important note

Before I write more about these reasons, I want to stress something important. As for most other ME/CFS patients who have chosen suicide, depression is not the cause of my choice. Though I have been suffering massively for many years, I am not depressed. I still have all my will and my motivation. I still laugh and see the funny side of things, I still enjoy doing whatever small activities I can manage. I am still hugely interested in the world around me – my loved ones and all that goes on in their lives, the society, the world (what is happening in human rights issues? how can we solve the climate change crisis?) During these 16 years, I have never felt any lack of motivation. On the contrary, I have consistently fought for solutions with the goal to get myself better and help all ME/CFS patients get better. There are so many things I want to do, I have a lot to live for. If I could only regain some functioning, quieten down the torture a bit and be able to tolerate clothes and a normal environment, I have such a long list of things I would love to do with my life!

Three main reasons

So depression is not the reason for my decision to terminate my life. The reasons are the following:

1. Unbearable suffering
Many of us severely ill ME/CFS patients are hovering at the border of unbearable suffering. We are constantly plagued by intense symptoms, we endure high-impact every-minute physical suffering 24 hours a day, year after year. I see it as a prison sentence with torture. I am homebound and mostly bedbound – there is the prison. I
constantly suffer from excruciating symptoms: The worst flu you ever had. Sore throat, bronchi hurting with every breath. Complete exhaustion, almost zero energy, a body that weighs a tonne and sometimes won’t even move. Muscle weakness, dizziness, great difficulties standing up. Sensory overload causing severe suffering from the brain and nervous system. Massive pain in muscles, painful inflammations in muscle attachments. Intensely burning skin. A feeling of having been run over by a bus, twice, with every cell screaming. This has got to be called torture.

This is a lengthy farewell blog from Anne who has been suffering with severe ME and burning skin for some years and who has decided that she is unable to continue with her courageous fight.

It is a long and heart wrenching article that comprehensibly explains the severity of ME and the horrible struggle to cope with burning skin.

It is a useful article to show others who do not understand our illness as it grants a detailed insight of the huge struggle we have to cope with the disease.

Anne has now just passed away.

 

[Wayne]

Farewell – A Last Post from Anne Örtegren

Thanks for posting this Kathryn. Very compelling, and very well written besides. Helps put my own challenges in perspective. Though I sometimes find it difficult to keep "plodding along", I can at least be thankful I haven't had to face the untenable situation Anne was faced with. -- Blessings to Anne and her family.​

 

[Jo-Jo]

I am humbled Anne. Thank you for your courage and the gift of your story. We all have a right to our feelings and man are we an amazing group of people, to keep trying to get well and help each other as we do. But I will think twice when I next complain, even silently. I guess I’m learning about the power of heart and soul to get me through another day. My heart just got a little bigger.

 

[Cort]

So sad. I knew Anne for a long time. Despite the fact that she was in terrible shape she always struck me as very objective and balanced. It would have been easy for her simply to be angry and lash out but she never did. She was open to questions, researched hard and reached out to a lot of people. She was very courageous in that way.

Besides the fact that she experienced so much suffering I grieve the fact that we lost another strong advocate - someone who, if she was just a bit healthier - could have continued making a difference. If she actually became healthy god knows what she could have done.

The same for Tom Hennessey and John Falk...

Here is the post I wrote regarding her death:

https://www.healthrising.org/blog/2018/01/10/farewelll-last-post-anne-ortegren/