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HOW CAN YOU EXPLAIN

Hi All,

 

Hope you are all as well as you can be.  Given this heat eh?

I need some pointers please?

Maybe I just need to harden up.  Which is not in my nature.

So far this summer we have had three and a half weeks or back to back guests.  It will stretch to five weeks by the end of it.  If I am still here !!

These are all close friends or family. Always groups of four inc. teenagers.  People who know my situation.  In all the three weeks TWO meals  have been made by other people.  I have made all the other meals, twice a day.  I have gone food shopping.  I have planned all the meals.  I have tidied up. My husband has done that.

Every day I have been urged, bullied to go out and about with them.  Swimming outside, boating, electric bicycles. I have tried to explain that it is more than usual fatigue.  That being out in this heat (beween 28 and 34C) is a no no.  I have done absolutely everything I can to explain.  I was given the reply by one "You give too many excuses not to go out with us. You just have to power through and carry on).  When they go bak from the swimming session they were all burnt!  So much for the shade they promised they would find me!!  There wasn't any!

After talking with my husband he feels this. He is always having to make excuses for me, why I won't go out.  People don't believe there is anything wrong with me.  I am making it all up. That is all the people around where we live.  That is most of our family members. People just don't care enough to want to understand.

I have been left feeling very wounded. Very wounded indeed.  I don't have many friends here. Tried so many times but they are just a very closed society and won't let strangers in.

I can feel myself retreating from the world.  I feel like just loving my animals and where I live..  That will have to be enough. I cant physically take this struggle anymore. Maybe that will have to be my life from now on.........

I have given so much of myself to others over the years.  Do anything for anyone.  Now I feel it has to stop.  I will have to be content with just being here and enjoying my surroundings.

Any help or thoughts would be gratefully received.  

Anne x

I have MS

Hello Anne

I think you need to have a rethink. It’s not you that needs to change, it’s your visitors. 

They should all learn something about MS. About the fact that sun and heat is a real issue for people with MS. And to have put up with visitors who treat you like a hotelier who also has to entertain them is just not on. 

My husband is actually the one who does the explaining to visitors that ‘Sue needs time to rest in the afternoon so why don’t you / we go out and leave her at home for a couple of hours on her own?’ It’s not making excuses and you, your husband and your guests need to understand that MS isn’t something you can switch on and off, or that you can ‘power through’. MS is a lifelong illness. You would I’m sure, love to take part in activities, but in order to do anything extra, you need help.

My friends also are the kind of people who want to share in the cooking etc. So we do things as collaborative chores rather than me doing the cooking etc alone. (Actually some of my friends see cooking meals together as part of their reason for visiting us.)

Perhaps when you entertain families it’s a bit different. But it shouldn’t be, just because your visitors are parents of teenagers who are also there, shouldn’t mean they have time off the minutiae of life. Staying with friends or family for longer than a week doesn’t mean you’re all on ‘holiday’, so your hosts have to feed and water you, shop, cook and clean, take you out places, swim, walk, cycle, go boating, in extreme temperatures.

I think your husband is the first person who needs to understand your MS. He should be taking a role in explaining to visitors that you simply cannot do what you once could. Then your visitors need to know before they arrive that you just cannot look after them in the same way that you probably have in the past.

It sounds as though your family and friends are being rather selfish, but actually I suspect that you have done all of the things they all expect of you in the past and they just don’t understand how and why things have changed. So write to them, tell them that you love to see them but that you need help if they are all staying with you. And that you will also need sufficient ‘down’ time to recharge your batteries. Shopping, cooking, clearing up, making beds, bathroom cleaning, washing up, all needs to be shared. And if they’d rather not do this, then they should be staying in a hotel or holiday home nearby and paying someone to do what you are being expected to do.

And the next group arriving need telling from the outset what is wrong with you and that they all need to muck in and help.

Don’t feel guilty about having MS Anne, and don’t even think for one minute that anyone is making ‘excuses’ for you. The fact is you now have a health condition means that life for you has changed. And if you intend to keep hosting your family and friends, they need to learn what your limits are. 

Sue

I have MS

Hello Anne,

I agree with every word that Sue has said. In fact she's given you such a compete answer it's difficult to think of anything to add. But here goes.

I can tell by the tone of your post that you are reaching the end of your tether. Your husband and the rest of your guests are running rings round you, but I am baffled why everyone is coming to you for their break. Why aren't you going to visit them? You seem to have got into the habit of being the domestic centre of their world.

You know things have to change. And as Sue says, you will need to start with your husband. Without his support you don't stand a chance of educating the rest of your clan. You need to sit him down, if necessary with some booklets from the MS Society, and get him to understand that it's not a lack of "get up and go" that holds you back but a very real aspect of an invisible disease. And that without his understanding and support that it's this lack of understanding and empathy that is making you  very unhappy.

I hope it's not too late for this summer but don't let their ignorance ruin your holidays in the future.

I wish I had something more concrete to add. You do have my understanding and sympathy but I'm afraid that the solution will have to start with yourself.

You've been a member of the Forum community for a long time. You know that you  can come back and offload whenever you want to. We really do want to do everything we can to help.

Best wishes,

Anthony

hi anne

i'd love to write words of advice but sue and anthony have done an excellent job of it.

so anne, please pick yourself up, dust yourself down and have a big long rest.

if you take note of what sue and anthony said, you won't be having such a week from hell again.

i get like that and the worse thing is that i get annoyed with myself for being a muggins.

have a nice relaxing evening, get your husband to pour you a drink of your favourite tipple.

mine is lavender gin!

i have to pour my own thoughfrown

cheers

carole x heart

 

I have MS

Anne,

so sorry to hear that your condition is being exacerbated by a lack of consideration. The comments and advice offered above seems pretty comprehensive. You really need to get your husband to understand exactly how you are feeling. He should be the linchpin in your family support team. It sounds like you have done yourself no favours by trying to keep going despite feeling lousy. I am sure you are well aware how vastly different MS fatigue is from being severely tired, but your husband clearly does not.

My wife learned about my fatigue when I was pleased by my achievement of feeding the cat, the sum total of my days labours! Fortunately with her support I now have vastly more energy. We have agreed specific terminology to let each other know when it is not just tiredness.

There are some resources that might help to get the message across .

https://shift.ms/msreporters-video/msers-rest-power-fatigue

https://shift.ms/msreporters-video/i-exercise-i-fatigue

https://shift.ms/msreporters-video/tips-coping-ms-fatigue

https://www.mstrust.org.uk/news/views-and-comments/describing-fatigue-ot...

https://www.mssociety.org.uk/about-ms/signs-and-symptoms/fatigue/about-f...

I wish you success in the main job you now have, which is to get him on board as part of your support team.

All the best

Mick

 

 

I think you need to start with the home team - your husband - and work outward from there.  If he was the one with MS, my guess is that you would see it as your job to understand his difficulties, help him to navigate them, anticipate what would be difficult, set other straight on what the problems were, shield him from unreasonable expectations and roll your sleeves up to pitch in and get the job done as a team.  Is that about right?

If he isn't doing that for you, and it sounds as though he isn't, then you and he need a good talk.  Is he in denial about your MS?  Does he just not understand what it is like for you? Is he so embarrassed about having a wife with MS that he pretends it isn't there?  OK, he might need some help to deal with this difficult emotional stuff - and it is difficult. But the bottom line is that you need an strong man on your team, and he needs to be it.  You cannot do this alone and you shouldn't need to try.

By the way, you do need to play your part by not colluding in the 'Everything's fine!' game by pretending to be superwoman when this is no longer in your repertoire.  You have clearly felt (however unwillingly) that this is what you needed to be, and people will tend to take their lead from you, so you do have to make the painful adjustment of admitting to yourself and others that this is no longer an option for you and being  firm and unapologetic about where your boundaries lie.  This can be hard. 

I am sorry that you are feeling bruised and exhausted.  I would be too.

Alison

Anne,you really do need to think of yourself and what is best for you,never mind what they all think,you know how bad you are feeling,you sound so,so worn out with it all,i make no wonder.

If you just want your home and thats enough for you,then thats what you must do.It sounds like they have all been taking advantage of you,dont let them anymore.Look after yourself you really need to,and if they cant understand that well sod them,my own family and 'so'called friends were like that,they never understood,i gave up trying to explain in the end.

I may have got this completely wrong but has your husband told your guests that on no account must they acknowledge/make allowances because you have m.s?

Hi Anne

You've had lots of great replies already, so no need for me to say much. The only suggestion I'll make is about explaining the effects of heat. You could try telling them that in the olden days, before there were things like MRI scanners, one of the ways they diagnosed MS was by giving you a hot bath. It was known that heat can affect MS really badly, so if you felt weak & fatigued after the bath, chances are you had MS.

Dan

Even without Ms involved i can't think of much worse than a constant stream of house guests for weeks on end,even if they were thoughtful and helpful! Why do they need to come one after the other? or at all.
I can't honestly say i really truly understand my wifes Ms (how could i really, haven't got it myself) but i try too,i have taken her to every appointment she has had to support her and take as much in as i can from these and what i read on here,and my observations of her everyday.
She is getting better at being honest about it but still has a tendancy to she is fine(F.I.N.E by Aerosmith maybe!) and play it down,so its probably not really fair to expect friends and family who are not so closely involved to understand too much.(though on occasions i get really pissed off about this,but just about bite my tongue).It is definately fair though to expect adults coming to stay to pull their weight and help with cooking etc regardless of Ms and would to me seem the polite normal thing?
I do most housework etc as my wife can't and i admit to getting pissed off that her adult kids living here haven't really seem to do much to help but again have to bite the tongue a bit to avoid upsetting her too much.But i have to say in recent months her eldest son has really stepped up and has been preparing delicious family meals on his day off with instructions on how to heat up and serve etc so maybe help and understanding can come with time!?
Although i say i dont expect people not closely involved to fully understand neither would i tolerate anyone telling me my wife was "making it up" and they would be told very bluntly where to go and they would be history as far as i am concerned and no longer of any relevance atall to us.
I must admit in the past i found it very difficult to talk about it to anyone at all as my wife was not very open about it to hardly anyone so it kind of felt i was betrayng her a bit if i did.Now we meet someone who hasn't seen her walking with crutch or on scooter and the "what have you done" is met straight away with "i have got Ms" i think that openness makes things easier.
All the best
Ollie

Hi Ollie

I doff my cap to you for being so supportive of your wife. Sadly so many people's spouses walk out on them because they got MS, completely forgetting that they vowed 'in sickness and in health'. You're a star :)

Dan

Hi Anne,

I'm so sorry to hear what you've been going through and as Dan says you've had lots of great replies with some sound advice (I think Sue's reply hit the nail on the head) so not much more that I can advise except that you need to learn to say 'no' and I don't mean that in a nasty context but you really need to think about yourself as it's obvious others aren't doing that.

You've got lots of friends on here that are full of support and advice so you are not alone but I really do think your husband needs to up his game and start helping you, and understanding about your MS (it's not going to go away).

Maybe he's in denial about you having MS in the first place but there's plenty of literature, help and advice available from the MS Society, MS Trust or other avenues that he himself could access, or maybe you could both sit down together and have a good chat about what's going on, and put some measures in place for you (& him).

Sending you some hugs :-)

Twinkle Toes xx

following on from earlier post - the 'odd' thing is that your guests seem to be making a conscious effort NOT to help - why is this ?
Most visitors would automatically offer help - 'let me do the shopping' or 'shall we take you out for a meal tonight' etc.
After all they are not paying for their stay, it's not a hotel.
And why is it a 'problem' if you opt out of some activity - your absence isn't stopping them getting on with things?

Thank You to all you lovely people who gave your time and thoughts to me. 

People come to visit us as we love in a gorgeous area. We can't visit them we have  animals. No one to cover for us.

 

Interesting though Krakowian.why did you think that.?  He certainly doesnt do that.

 

Will have to work on myself. Sorry. New drugs kicking in.all over the place. Ba k soon.s

 

T

 

Really been thinking about what you all have said.

 

Thanks once again..

Take care all........

Anne x