Everyday life with ME/CFS: Between nurse no. 17, clinic and hope

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New nurse

Today a new nurse started with me - in the meantime the 17th caregiver in just over four years (after Roman, Anna, Christina, Efa, Barbara, Elzbieta 1, Maria 1 - unfortunately she was diagnosed with cancer and died of it, Maria 2, Isabella, Longina, Jaczek, Violetta, Adrianna, Elzbieta 2, Valentina and Krystof).

For me, every change means New processes, much re-explain and again Build trust. Especially with severe ME/CFSwhere every little change costs additional energy, it's a big challenge. At the same time, I am grateful for every helping hand.

Clinic appointment on Tuesday

On Tuesday we go to the Mannheim Hospital (Urology). At the last appointment there was very Respectful and understanding dealt with my illness - I was taken seriouslyit was Consideration for my stress limits taken and there were no derogatory comments. Something that sounds self-evident to many is a challenge for people with ME/CFS Unfortunately not at all a matter of course.

Because the opposite has happened to me too. Especially with ME/CFS experience many of those affected:

• Lack of knowledge with doctors about the disease
• lack of consideration to the extremely limited load capacity
• or even derogatory comments how: "You just need to do more exercise."

It means all the more when once really Respect and understanding are noticeable.

Planned this time are the Tumor follow-up checks with CT and ultrasound and a Gastroscopyto improve the condition of my severely Oesophagus to check.

Here, too, my ME/CFS Every examination and every stay is extremely physically demanding.

Costly transportation

The Transportation is always a small Large-scale operation: Because of the Stairs at my home it needs two ambulances, four paramedicsand I will be in the Sling worn.

Planned stay & recreation

I will probably stay two to three nights in the clinic. After that, I will probably have a Have to recover for a while and is less able to react. Unfortunately, even medically necessary appointments can lead to Post-Exertional Malaise (PEM) - lead to a worsening of the symptoms.

 When I am in the clinic, I am very happy to receive news from you. They give me strength and help me to get through the time there a little more easily.

Thank you!

A large Thank you to all of you: Thanks to your support, the Postcards be fully financed for Kurpfalzglück.  This is an important signal for me - you make it possible for my project to continue to grow and more Visibility for ME/CFS is created.

The next financing project is the annual operating costs to.

If you have any feedback, would like to share your own experiences with ME/CFS or just want to say hello, feel free to write to me via the comments function or in person, regardless of the channel.

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