M.E. frozen shoulder and severe constipation and visitors coming today for 3 nights,

Hi Alison. So many people don't understand ME and CFS because they have never suffered from the symptoms. Would your daughter be willng to read any of the posts on this forum to see how real and debilitating it is for those who endure it day in and day out?  You must make it clear to her that you're looking forward to seeing her and the children but that she must realise you need to take regular rests and she needs to help out as much as possible with cooking and washing/tidying  up. It should be a joy to have her stay not a dread and I hope you can gently get her to understand that. Good luck. Let us know how it goes.  X

You need visitors like a hole in the head. Really, sypathetic adult family might just be possible . even so ME would be agravated. This unsympathetic onslaught really should be avoided on health grounds. i understand you normally live alone.

After so many years with ME have you yet keart that not pushing yourself is the basic therapy for recovery plus the miriad of variations we all exhibit?

I hope you can put your daughter off without adding to family difficulties.

Oh Alison, I really feel for you.  People often take it as being about them when we aren't looking forward to situations, whether it be a social function or time with family.  It can be taken so personally when we are not sure how we will cope (or extremely sure we won't cope), it can take so much out of us to have the simplest of conversations with those closest to us, let alone have to try and function at any leve of what they consider the norm, if only they could feel what we feel for 5 minutes!  There have been times where there were a few people I wanted to experience my symptoms for even just one day, but in all seriousness wouldn't wish this on my worst enemy.  If your daughter will read these posts, I hope seeing so many of us suffer with similar problems (there are millions afterall) that she will see so many people surely can't be wrong.  There is more chance of aliens landing than finding out this is all in our heads.  Afterall, using pure simple logic, if we had energy and only used it to do all the things we manage to do to get by we would be bored and looking for more things to do and would be more sociable automatically, it would come naturally just like it does for everyone else.  What makes us so different to everyone else?  Why wouldnt we respond to situations just the way others do, if we had the energy/health to do so?  What makes them think they are so different that they are special/better/more willing than us?   Do they not think we are screaming on the inside to have good health and energy.  

Its not that many years back that teenagers were still being labelled as going through a lazy stage in their lives and were considered to not have the same work ethics as their older generations and that they needed to pull themselves together, only for decades to go by that scientists discovered teenagers actually need more sleep.  

I appreciate for your daughter that this effects her too and her relationship with you and that she must have her own emotions about it.  Please tell her from me that this is not something you have control over and that as bad as it may be for her its 10 times as bad for you, so give her a hug from me but tell her to give you 10 hugs from me.  Some people think we are just weak, but little do they know we are stronger than they will ever have to be in their entire lives, I pride myself on that and so should you

Hi Alison.  I would go along with Mary and try and get your daughter to read the posts.  Also, on the Action for ME sight you can get factsheets for family, carers etc.  I have printed some of these off and given them to family members when I have needed to.  I think one of the issues are that some of the time we look quite well and family and friends find it hard that we really do not feel that well, exhausted etc. 

What I think I would do, is basically have your home as a self catering base, so they have to look after themselves and take on board that there will be times when you need your own space.

Wish you luck with this.  Visited my brother Easter Monday and he wanted to go for a walk, and he lives right at the bottome of a very steep hill (can't get out in winter), just looked at me blankly when i said I wouldn't be able to manage it.  I only just managed to get in the car (husband drove) and did an hour visit.

They haven't a clue sometimes!  It is so good that this forum exists and we understand where you are coming from.

All the best.

Tx

How about taking a few pain killers to tkae the edge off only?  As you've had the M.E. for 32 yrs she knows it and understands you have it.  She's possibly just frustrated for you and her along with the grandkids.

Do what you can, pace yourself, and try to create some nice memories of their time visiting.  Good luck xx

Maybe she will be more sympathetic this time due to your shoulder?  Fingers crossed anyway xx

Learn to say NO.... sorry but I can't do that.   Ask them if they can help you and if they refuse put very little on the table saying, sorry but its all I can manage.

people really don't understand because they can't see the condition and we don;t help ourselves when we keep going because then we confirm their belief that nothing is wrong. What they don't realise is that you will be in bed for days afterwards.