huManS – a great initiative for People with MS from People with MS

Once you get the diagnosis for diseases like multiple sclerosis it seems like life is over. There is this disease, MS, which there is no cure for. Your life is chaotic, full with drama and also in a status which makes you sad. You are depressed and mostly you don’t know how to move on.

There is a lot to know but what to know when? You ask for future, job, family, dreams and wishes you have and know: Nothing.

As I left hospital after I was diagnosed I had a big problem: I didn’t know anything about living with MS or how to deal with the situation. There was no information available and the only message I received from doctors was: „You will not die and also you will not sit in a wheelchair tomorrow.“

Encouraging right? Life seemed hopeless and I thought everything was over, I would sit on my sofa and waiting for ... what?

In this time I wished for a friend, a shoulder to cry on and somebody who was able to understand what was going on in my life. Somebody who would had some wise and encouraging words for me, a little bit of  comfort, a hug.

There were nobody for me. I was alone. But I made it, I found people, got my laughing back and found a way. But it was and still is a challenge. In the last years I’ve met lots of people with MS from different countries. Some of them became friends. 

Like Joan from Ireland. She was diagnosed in 2010 and says „this punch still hurts“. 

But she is very engaged and had an idea, the shoulder to cry on in the form of a little book.

This book is called: huManS. And it shows people living with MS and give them space to explain how they live and what they are think about MS and all the things which come up when there is this diagnose.

Joan sent me the book over some weeks ago and I wished I would have had it as I got my diagnose in 2005. It is encouraging, motivating and inspiring. And, as already mentioned: It is the shoulder you need sometimes.

You can find out more about Joan’s book at www.facebook.com/HumansMultipleSclerosis. She has sent a copy to every neurologist and MS Nurse in Ireland and hopes that people will be given one at diagnosis. It’s Organic MS- words from people living with MS for people who have just recieved life-changing news. Nothing else is added.

Joan says: „This is the book I wish I had been given back when I was diagnosed in 2010. I applied for a grant from the Irish Health Minister to fund it. I learned photography and a friend who also lives with a chronic illness (Rachel Lynch) did the graphic design. I asked a broad range of people to participate and everyone was so generous with their stories and advice. This was an itch I needed to scratch. I really felt that I was given the medical side of my diagnosis and then sent home with no emotional care. I want other people who are diagnosed with MS to have the option of a different experience.“

„The feedback has been overwhelming! MS ireland has committed to reprinting the book and newly diagnosed people have told me how much it has helped them. This makes it all worth it! The booklet style is good because people can take it and look at it when the time is right. I hope to take huManS global in the future.“  

I hope that too, because we all know: It is good to have a person, a personal shoulder to cry on. To know that there is somebody who experienced the same or similiar situation can help to move on and find an own direction. 

Best wishes,
Birgit


Text: Birgit Bauer
Picture: Joan Jordan

Wir reden nicht darüber! Warum ich die Lüge über Krankheitsfakten nicht mag ..

Letztens kam ich einer Lüge auf die Schliche. Einer Lüge, die ich unheimlich verärgernd finde und auch diskriminierend.
Und warum wurde ich angelogen?

Weil ich doch selbst MS habe, so schwer krank bin.

Daher hat man entschieden, mir nichts zu sagen, oder zumindest etwas herbei zu erfinden, was sich halbwegs glaubwürdig anhört, aber eben nicht die ganze Wahrheit offenbart. Aber die Wahrheit verschweigt man, weil ich das ja nicht ertragen kann. Meint man. Man fragt mich nicht danach, man entscheidet für mich. Man will mich schonen.

Nominiert: #WEGOHealthAward

Ihr Lieben,


gestern erreichte mich am Abend eine Nachricht, die hat mich fast vom Sofa gewuchtet. Ehrlich gesagt. Wer mich kennt, der weiß, ich bin schwer aus meiner abendlichen Ruhe zu bringen, vor allem, wenn ich nach einem Meeting nach Hause komme und müde bin und in Ruhe meine Pizza mümmeln möchte.

Aber mitten im Fußballspiel ging das so:

Ich daddel am Handy und bekomme die Email. Kroatien schießt das erste Tor. Wir jubeln.

Ich wegen der Nominierung zum "Best in Show" Kategorie Blog von WEGO Health für den WEGO Health Award, der Mann wegen des Tors.

Allerdings war ich irgendwie anders am Jubeln und wir sehen uns an und ich muss erzählen.

Über die Freiheit des Patienten ... #HSK18

In der vergangenen Woche war ich beim Hauptstadtkongress für Gesundheit und Pflege in Berlin.

Die Veranstaltung in Zahlen kurz und bündig: rund 8400 Besucher in drei Tagen und wer #HSK18 auf Twitter verfolgt hat, konnte viele Impressionen aus sehr vielen spannenden Programmpunkten einfangen. Es ging um Digitalisierung und um spannende Lösungen, die Menschen mit Erkrankungen und auch dem System gute Unterstützung bieten können.

Der Kongress so: Viele Männer, wenig Frauen, das merkt man daran, dass man nie an den Toiletten anstehen musste. Das ist übrigens nicht von mir, sondern von einer Teilnehmerin.

Eine Session hat mich jedoch besonders mitgenommen und ich fand sie wirklich sehr spannend. Es handelt sich hier um eine Debatte. Drei Teilnehmer (Männer) für und drei Teilnehmer (auch Männer) dagegen.

Das Thema: Wie viel Freiheit braucht der Patient?