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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Need support, from France sufferers

Hello everyone. I am 38, female and currently living in Germany. I ve been suffering from ME, Mast cell activation syndrome, Small Fiber Polineuropathy , severe chemical sensitivity ( I would rather call it INTOLERANCE, not allergy!!! ), Hashimotos, Hypophysis insufficiency, for 15 years. Now struggling with the consequences of covid ( I had it in March but I got Paxlovir and antibodies, this save me, I will open a post for this )Last week my father unexpectly died.Days before he died he asked me to contact a niece who is living in France explaining to her why he couldnt see her ( my mother isolated him and when he lost his ability to walk he couldnt contact her because she was controlling his phone ) and to tell her that he is sick and abandoned but he loves her and thinks about her.I was so happy when I contacted her- she inmediately visited him and she could hold his hand and comfort him. Suddenly he died and I was devastated. I cried for 15 hours and I bought the first plane I found to go and give him the last kiss and hug:(. I had to take taxis and already at the beginning of my trip I was experiencing PEM.You all know how adrenaline can give us a booster and we can do things but after that we pay an expensive bill with a crash. I managed to see him and be with him at the funeral home, I took an hotel and the next day I flight back Germany. I landed in Germany with tremors, shaking,pain etc , and I am still in crash.My cousin asked me if I am ok and I am having lots of anxiety because I dont know how to explain her that yes, I could flight and I could see my Dad, but now I am paying for it, because I have ME/ CFS.I dont want her to think I am a pretender and I fake illness.I would be so thankful if people from France here could give me the best information and links about ME ( please not “ fatigue syndrome” )in french to tell her the best way possible what I suffer from and that she understands.She seems to be a real nice person and I would like to keep in touch with her and be friends
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Psalm 46:1-3
Great Lakes
I'm so sorry to hear about your father. I lost my sweet Mom last year too so I know it can be rough. Sending you and your family a hug and a prayer.

I hope someone from France will be able to help you with your request and that you can keep being friends with your cousin.
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vision blue

Senior Member
My vote would be to avoid lenghty explanations and articles that she can read. its a turn off , ESPECIALLY to those are who emphathetic and genutinely good people. it upsets them too much, or some such.

anyway, can't you just say : its so nice of you to ask how I'm doing and I really appreciate it. i've got chronic medical issues so trips and things take a huge toll and give me a set back so takes me alot longer than most to recover to my usual self. I am so glad you were able to see my father too and am so glad that you and I have become acuqnatained and really hope we stay in touch.

Isn't that enough? No labels, no articles, no elaborations.

if she's insistinat you can always say "it's complicated" and I'm sure I'll fill you in as we talk becasue its often on my mind". and id dstill even if she was super insistent avoid the term ME or CFS. If you get to know her, one day she may say, and let HER be the one to say it" You know based on what you've told me it sounds like more thatn MCAS and someting called CFS". then you can talk about it- hopefully that will be 2 years from now when youre good friends and it won't upset the apple cart.

just some thoughts from someone who didn't know what i was doing at first and lost all my emphathetic friends and have left sociotpaths (not kidding), emotionally detached people, and others in a similar position.