A Christmas wish

Dear friends and family,

If you know someone with M.E., you are probably accustomed to their cancellations at the last minute or to them being late, the lack of invitations to their home and their passivity in most contexts. Maybe this annoys you a bit as well?

Now that Christmas is approaching, we have a wish for you. Hopefully you will meet a family member or a friend with M.E. over the Christmas season, and if you do, remember this:

juletallerken-fra-meny-no– Please accept what you might not understand. When an M.E. sufferer comes to a Christmas party or gathering, please be aware that the strain of simply getting there is a huge accomplishment for someone with M.E.

– Skip the «funny» comments about arriving late and leaving early; the lack of  participation in the same way as the others of the same age; the «laziness» of not to «bothering» to help lay or clear the table…

These comments hurt the M.E. sufferer, and they have no effect other than to emphasize everything they are not able to contribute to, which they already are painstakingly aware of. If they can manage to help, they surely will.

For sick children and young people, comments like these also hurt their parents, as the parents truly see how much it costs their children simply to show up – even if it is only in their own living room. Although someone with ME may look healthy, you should know that there is a cost to mobilizing for any activity, even if the child is looking greatly forward to it – and that they pay dearly afterwards.

During Christmas it tends to be big happenings several days in a row, which is particularly demanding. And you cannot SEE the pain, dizziness, nausea, confusion or other symptoms. Although they may have severe symptoms, the vast, vast majority of children with M.E. will do their best to hide them, and they do not wish to spend the evening explaining and defending themselves. And the strongest symptoms usually appear afterwards, when they can relax in peace and quiet.

It’s wise to remember that a person with M.E. has at least 50 % reduced capacity compared to the way he or she was as healthy, and of this capacity they cannot tolerate to spend more than 60-70 %. That does not leave much left to spend, even for a person with a mild degree of M.E. So please, just be happy that your loved ones are able participate as much as they are able to!

Thank you!

The ME Parents

 

 

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Om ME-foreldrene

Bloggen ME-foreldrene drives av foreldre til barn og unge med ME. Vi samarbeider om å øke innsikt og forståelse for vår og våre barns situasjon. Støtter biomedisinsk ME-forskning. Du finner oss på facebook.com/ME-foreldrene og på Twitter som @MEforeldrene. Les mer under «Om oss» og «Hjem» (Sidene vil oppdateres fortløpende, da ME-mammaene som startet bloggen nylig har slått seg sammen med en gruppa ME-pappaer.)
Dette innlegget ble publisert i ME, Personal from parents of children with ME. Bokmerk permalenken.

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