English further down

I går var jeg på mitt andre ME-treff. Det var ikke de samme menneskene som dukket opp som for to uker siden, men vi er jo som kjent en upålitelig gruppe. Mange vil, men de fleste skriver seg på “kanskje-lista”. Bare noen få får det til. Dagsformen bestemmer. Siden jeg var der for andre gang, følte jeg meg nesten som “fast inventar” da jeg skulle hilse på de nye, som var nesten alle fremmøtte. Jeg så for meg at vi måtte bli en vanskelig gruppe å arrangere julebord med påmeldingsfrist for. 😇

Siden stedet for treffene er rett ved Vår Frue kirke, hadde jeg lagt ut et bilde av Vår Frue kirke i blogginnlegget om forrige treff. Mange – som sikkert bare så overskriften og bildet – hadde trodd at det var der treffet var. Dette var imidlertid bare utsikten fra inngangen til ME-treffet. For ordens skyld legger jeg ut et bilde av gata og inngangsdøra, sånn at flere finner frem til riktig møte neste gang. Det kan jo hende at noen forvillet seg inn i Vår Frue kirke pga av dette, og siden det var åpen kirke og martna i byen. 😁

Med kaffe- og te-servering, og medbragte matpakker hadde vi en trivelig formiddagsstund på “Batteriet”. Vi var innom mange tema, etter innfallsmetoden og etter som spørsmål og ideer dukket opp. Bl.a. snakket vi om feriemuligheter for ME-syke, mangel på besøkstjeneste, frivillig arbeid, skoleungdom som faller utenfor, mm.

Det var også plass for latter og humor underveis. Jeg har lurt på om det er slik at alkohol virker annerledes på en kropp som er ME-syk. Jeg kan merke at jeg får mer energi når jeg drikker alkohol, og merker dessuten tidlig at jeg tilfører kroppen alkohol. Noen andre hadde også merket dette, mens noen bare blir dårlige (uvel/svimmel). Felles for oss er uansett at “dagen derpå” blir desto verre. Jeg foreslo at noen burde foreta en studie på dette med hvordan alkohol virker inn på kropp og hjerne for ME-syke. Kanskje forskerne kan finne noen biomarkører her også? Noen som tar utfordringen? 😎

Jeg har tidligere tenkt at jeg ikke ønsker så mye kontakt med andre ME-syke, men etter disse to treffene, skjønner jeg at det er mange trivelige folk i denne gruppa. Tusen takk til de to damene som tok initiativet til disse uformelle ME-treffene! Håper flere finner veien til treff, og at dette får mange positive ringvirkninger! 

English:

Yesterday I was at my second ME meeting. The people who showed up were not the same as last time, but like I mentioned earlier we are an unreliable group of people. Many will reply “maybe” to the invitation. Only a few will be able to make it to the meetin, depending on how they feel that specific day. As this was my second time there I almost felt like a permanent fixture there when saying hello to the others present. I pictured it would be difficult to arrange a Christmas party for our group with a deadline for signing up. 😇

As the location for the meetings is next to Vår Frue church I had posted a picture of this church in my blog post from the previous meeting. A few people – who had maybe just seen the headline and the picture – had believed that the meetings were held in the church. However, this was just the view from the front door of where the meetings take place. So for the record I’m posting a picture of the street and entrance door, to make sure more people find the right meeting next time. It may very well be that some got strayed because of this, and because there is a street market in town and the church is open to the public. 😁

There was coffee and tea and people brought packed lunches to make it simple. We had a nice morning at “Batteriet” and talked about various topics, depending on what questions and ideas that popped up. Among other things we talked about holiday possibilities for people who are ill with ME, lack of visitation service, volunteering, youth who fall out, and a lot more.

There was room for laughter and humour along the way as well. I have for a long time been wondering if alcoholic drinks influence the body of a person with ME differently than that of a person who is not sick. I have noticed that alcohol affects me very early now, and besides I seem to get more energy when I consume alcohol. Others had noticed this as well, while some just feel very dizzy and unwell. Naturally, it was quite recognizeable that the hungover got even worse. This we had in common. I suggested that someone should do a study on how consuming alcohol affects the bodies and brains of people who are sick with ME. Maybe the scientists would even find biomarkers in this field? Anyone out there who is up for this challenge? 😎

Previously my attitude has been not to be so much in touch with other people who have ME. After these two meetings, however, I have realised that there are a lot of nice people in this group. Thank you so much to the two ladies who took the initiative to these informal ME meetings! I do hope that more people find their way to the meetings and that it all will have positive and extended effects!