It's been a really beautiful day in the South East, and on the spur of the moment we met up with friends and visited the home of Rudyard Kipling.
Not much walking required and able to sit down in the house pretending to intently study his diaries - which I have to say were fascinating.
So all going well until the husband of my friend, after I had told him I wasn't working due to having ME, said 'Oh, that's the one where you feel a bit tired and fed up sometimes' - my dear hubbie very quicky changed the subject because he knew I was close to blowing a gasket - or worse :steam:
We really do have a very, very long way to go before others really understand how we feel :roll: :roll:
Thank goodness for this forum!! Otherwise I would be :evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil: :evil:
haha a guy who works at the job centre said something like that to me yesterday and my barber did as well!my barber loved knowing more about it tho and said that he feels bad cause another person who comes in has it and he always takes the p*ss out of him cause he thought it was just lazy people who say they got it!which makes me wonder do you think that some people do claim to have it when infact they are just to lazy to get a job and thats why the doctors tend to find it hard taking notice?just a thought!
That's a valid point Matt, I think you may be right. I have to admit there have been one or two times when I have said I feel worse than I do to avoid a family occasion with the in laws :oops: Like you say, who's to know as nothing shows on the outside. :roll:
Katie, that is almost word for word what was said to me once. My son's attitude is also a bit like that..People need educating but I find I am unable to muster the mental energy needed to argue and explain and justify myself. Some people do not want to know.
The key to living with ME is to understand the condition yourself first that promotes confidence to tell/explain to others about your difficulties. It is SO much easier to exasperate your symptons to others becasue MANY people dont take the fatigue serious and often people think that their fatigue is the same as ours - not even to mention the 101 things we sufferes deal with!
Initially I found myslef telling people all the time I had ME - NOT FOR SYMPATHY but to try and make people understand I was ill. I was looking for re-assurance people understood. How wrong was I?
As for me now I keep my ME rather private but when people see that I am ill they tend to take me more seriously. BUT as you all know we often look well so these situations are rather rare. An example of this was at the stables last night and I tried to explain something to one of the girls, the words were there but just wouldnt come out. I explained to her that my ME was preventing me getting the words out and after looking at me rather puzzled she said "thats ok I can wait". These times are hard for me because I am real people person!
In a world of such narrow minded people I suggest you all find inner peace with you illness and let that be a basis for your own progress with living and dealing with ME/CFS
Yes, I prefer not to talk about my ME unless I am asked - it's actually very difficult to describe exactly how we feel anyway, and I find I can't always remember what is exactly wrong with me!!!!!! :? :? I just can't seem to say the word cognitive - or encephalomyelitis either. :roll: Half the time I just end up speaking a load of rubbish - and then feel drained.
I think I have improved since leaving work (I actually typed in 'since leaving school' :? )!! and it really is great not to have to try and rush round in the mornings - I don't think there is any way my jumbled brain will let me go back. At least now I can just potter around - but I do find myself avoiding talking to other people if possible - which is sad really, because I too, have always been a 'people person'.
Not having a very good day - my hands feel shaky and I'm having real problems typing this plus finding it hard to put the words together........
Oh dear!
Donna: do enjoy your day at AT tomorrow - I'm sure you will let us know how it goes :wink:
I have 2 very good friends. One is a widow 19 years older than myself and the other is a disabled gut with spinal bifida. Both these friends have been through horrendous times and prejudices and, in the case of my disabled friend, verbal bullying. They are both very ready and willing to listen when I try to explain how I am affected and my disabled friend is very aware of how activity might affect me and will not let me overdo it when we go out together.
I think that because they struggle themselves they are more tolerant and are not always rushing around and expecting me to do the same. They both give my spirits a life in different ways, and they both have a westie dog like myself. When I am feeling out of sorts with the world it is nice to call on one or other of them for a cuppa.
Thank you Marjorie and Mark, for your friendship. :hug:
I have had a look at the Permissions set for the forums and unfortunately only Admin can edit posts.
The reason for this will be that if we made editing public, we could potentially end up with anyone editing posts for malicious purposes - we already get them alerting posts for something to do.
Sorry - we will just have to keep reading the spelling mistakes, don't worry - you should have read some of them, eh Melbi?
Thanks for the input. I will continue to mis spell. Perhaps I ought to check the post back before I hit the 'submit' button - now there's an idea :roll:
I just did that and found two in this short post :lol: