Spouse wants to invite a friend to visit when I’m very sick

I got to the point where I was in a semi-permanent crash in what I think is close to severe state for a couple months and was starting to become suicidal because I thought it would never end (it was non-stop torture level pain), fortunately it got a bit better. I couldn’t do anything during that time other than going to bathroom and minimal food prep.

 

in my experience people dont do this very well. Of course its tricky when they she's the spouses friend & likely not appropriate for you to tell her anything before now, but if she comes, you may need to actually explain to her yourself as soon as she arrives, why you cant come & be with her. Its hard enough for us to explain let alone a non sufferer explaining to someone else. And in my exp, even though people say to me "ive told them all about your difficulties".... when i discover what they were actualy told... its minimal like 'she gets very tired' or "she cant cope with a lot of noise". It never conveys the reality so i'd think it fairly safe to assume that whatever's been said wont be enough for her to understand why you look ok but are still locked in your room.

to an extent yes. Thats why i find i need to keep checking because ME is a complicated disease with unusual features & impacts that is hard to understand from the outside & also people just forget bits of it because its not their experience, its (frustratingly but understandably) up to us to remind/renew/re- educatethem maybe.

Only those who see what happens after i do things really have a hope of understanding, so someone who lives with you really ought to be able to grasp the impact having someone to stay will have - you already mentioned your spouse knows even without asking that they'll need to take her out for most of the time. But most people find it hard to hold the multifaceted nature of the impact in their minds - they get a couple of key points but then they forget the rest or dont understand how it al fits together.

So you could acknowledge thier realising they need to take her out & thank them for it - might be a good way in to explaining/asking about the other impacts.

chaneging the subject - I find it devastating to have people in the house & have to isolate myself in bedroom, it makes me cry with loneliness & grief, i am such a social person, but i got over the 'its rude'/socially unacceptable thing yrs ago. ITs hard though, especially if this is relatively new for you.

Edit when i said 'ought' to be able to understand i didnt mean that in a judgy way like they are failing - i meant that at least they have some hope of being able to grasp it if its explained in a way they can hear.

 

@leokitten from all the information you provided, it doesn't sound like you can avoid PEM even if you were to stay in your room, as too much movement and sounds from the TV cause symptom exacerbation. I think it's possible your spouse has yet to come to terms with how severe you are now and what that means for them in terms of the necessary precautions that both of you need to take to avoid the trajectory of your illness worsening.

I think your partner believes you as he has seen everything up close, but acknowledging and accepting are different. This incident may cause for a compassionate discussion between you both about the vital changes needed since the last ten years when you had your previous visitor. I hope your spouse can find other ways for him to engage in his cultural norms without it affecting you.

If you feel weird that you might have to stay in your room if anyone was to come over to visit. I believe it's a valid concern to share. ME doesn't come with the same societal understanding and empathy that people with other well-known long-term illnesses tend to receive.

Some of us are lucky to have people who accept our limitations and work with us in a manner that makes us always feel believed. However, according to what I read, for the most part, including for myself, it's a constant battle. I wouldn't want any friction to be caused by this event, as long-term illness can place a strain on relationships.

I hope you and your spouse amicably reach the best outcome for you.

 

A little off topic.

During the early years of M.E (early 90's) our local support group made up pamphlets describing symptoms and how they impacted our day to day life. The pamphlets were brilliantly written in a concise manner that anyone could easily understand. They handed them out to doctors office, health clinics et and this was how I found my M.E doctor from making a simple phone call to a health clinic.

I also handed out pamphlets to friends and family because I was unable to communicate what was happening to me. They were empathetic and understanding that I couldn't attend events, weddings, funerals and it took the stress off me.

@leokitten I wish I would have saved them so that I could send one to you. Maybe you can find one online and print it out and have your spouse to give to her?

 

How many bathrooms do you have?

Years ago my partner and I went away to stay with a member of his family. They offered us a double room with a bathroom close by for our own use. My partner wanted to stay there to be close to his family. It was a disaster for me.

The room was so small. It was unheated. The bathroom had 2 doors and could be locked from either side. Our side was usually left locked by the homeowners who forgot I was there and the only other way of getting there was through the main sitting room. There was no phone. I was sick the whole time yet the extended family expected me to cook and socialise.

We learned that although intentions were good it was not always the best idea.

Sometimes my partner has felt obliged to offer or accept accommodation. Maybe the intended house guest just expected to stay and your partner agreed without thinking it through? They got carried away with the happy thought of seeing their friend.

In the past we had people to stay but we learned that this didn't always work out. My partner would get excited about seeing a friend and want them to stay in order to get the maximum enjoyment but due to our small home and how expensive it was in our city it was different in reality.

Sometimes things move on and housing or lifestyle changes. It may have been fun to have houseguests before but not now you are so unwell.

Personally I wouldn't have a house guest unless I thought they would be comfortable and I would be comfortable with them. Why be miserable and cause a strain on the relationship if you don't feel comfortable or feel you could not make them comfortable.

I don't understand why your partner would choose to do this but having seen how my own partner gets almost manipulated or decides to put their own (sometimes romanicised /idealised?) interests first without thinking it through properly maybe there is a little bit of this?

 

Fortunately we have two bathrooms, and the extra bedrooms and bathroom are on the opposite side of the house down a hallway compared to the living areas and master bedroom. Also good is that the master bathroom is en suite so I don’t have to go out to go

After all the great advice here that helped me think things through (thank you) we talked again and are going to invite her for two days instead of three and I will be mostly in bed it’s up to how I’m feeling. He’ll explain more to her why I’m not being rude etc.

 

so peased you manegd to work it out together Hope it goes well

 

So glad you talked things through and came to an agreement. Can you please let us know how you get on with the visit if you feel up to it and talking about it. No worries if not and wishing for the best possible outcome.

 

Sorry you need to compromise with your spouse on this. I totally understand not wanting people around when you are struggling just to be up and attend to your personal care. Covid have been a very good reason not to have people here, and it has provided a good excuse to have people here. Now less so, but I know of 2 people who got Covid in the last week, 2 different regions of the continent. The risk is still there.

Best wishes.

 

I’m sure many people think we are agoraphobic or something but couldn’t be further from the truth

 

It will be end April or early May

 

For me there has been pressure to visit on the other side of the country, and from my point of view, the travel is a major problem, plus the talking, plus exposure to sound, plus the time change, plus the stairs involved. and then I have to return home. While I can do a few things during the day at home, I pace myself carefully and I am never out for too long.

 

@Milo Even when I was less severe than I am now major travel always comes with this fear that I won’t be able to make it back! That I will overexert so much and crash so hard that all plans go out the window and I’m stuck wherever I am for days to weeks, praying I’ll improve enough to make the return journey.

 

I several years ago I travelled by plane for health care and I remember feeling a horrible crash that built as I was driving to the airport and that continued while sitting on the plane. The worst feeling. Then when you land, you have to drive yourself home.

I would not appreciate being stuck "somewhere" due to being crashed- my home is my safe place. I am typically sensitive to sound and movement, and cannot talk for a long time, so having someone around me when I am feeling at my worst is not going to work.

 

Same here! I still have recurring dreams that I'm travelling or at an airport and I'm unable to return home and all my friends have disappeared. I'm aware that I have M.E in my dreams and I can still walk around but I panic b/c I think my energy will run out. Weird.

 

I'm glad to hear you've found a solution that will probably work for both of you.

You say your partner's friend has gotten to know you well - (If it's the honest truth -->) maybe you are comfortable and well enough to also greet her warmly yourself for a short moment and express your regret at not being able to hang out, but that you're happy to have seen her for that moment? It's not to "defend/explain" yourself, but I agree with @JemPD that you might feel better, and less awkward if you have some control this way, no matter how well intentioned your partner is. "Hey X, lovely to see you! I wish I could stay but I have to go to bed: my shitty illness is immuno-metabolic which means my body gets sick if I stay up. I hope to catch you later for a short mug of tea/whatever you might manage, have fun together" makes you part of the visit without having to actually be part of the visit. I have done this type of say-hi-and-then-retire regularly in the past, but then it was always day visits not overnight stays.

If you're doing too poorly for this then nevermind of course.

When I was bedbound sometimes visitors for my partner dropped in for a short hello: I gave them a hand squeeze and that was it. If you do something like that, then you could ask your partner to guide your visitor out of the room after a couple of minutes.

Also maybe a helpful idea (although you probably already thought of it): do you have pyjamas you feel less garbagey in? If so, wear them in the visit period, and if not, get some if you have the budget. It means you can stay in your pj's while feeling less self-conscious about it. So less pressure to be "dressed" and also less pressure if you wanted to be dressed but couldn't manage it.

(I had this collection of worn out pyjama bottoms, old big shirts and huge nighties. A couple of years ago I decided to buy some cool pyjama pants that I wear with a hoodie or knitwear, and it's making a big difference in how I feel on PJ days, especially with other people. I can still look like garbage, but at least it's coolly dressed garbage.)

Best of luck!