Dealing with (other people's) emergencies

[SnappingTurtle]

I feel like this is a rhetorical question, and yet am hoping someone will give me an unexpected answer: what does a person with ME do, if someone you care for (family or friend) has an urgency/ emergency for which you might be expected to be responsive or present but for which you might suffer terribly with PEM afterwards?

 

[christiankatz]

If it's any consolation, I didn't make it to my sister's funeral, and she was my closest friend for life.

I'm sorry if there are expectations on you right now that will make you worse. Is it possible to get out of whatever it is?

 

[Hufsamor]

Oh, that is the question…
My life have been full of that kind of emergencies lately.
For close family and great emergency- if I am able to act in any way, I do.
Even if it means a week or more with terrible PEM afterwards.
But those situation often stretch out in time, so what to do week two? Or week five?

For friends I’m more….if I seriously should have visited, I make a phone call or send them a present by some home delivery or both.
If I should have phoned but don’t feel up to it, I text them or email them or send them a present by some home delivery or both.

Examples:
My mother was hospitalised and dying.
If I was well, I would have been there every day for an hour each time.
In reality I went every second day, for between ten minutes and half an hour.
At the end of it I was very sick for more than a month, but I don’t regret the effort.

My mother in law was hospitalised after a fall, I was the one who found her and called the ambulance.
That day I was already rather tired, but had decided to make her a quick visit anyway.
And ended up in the emergency for hours, I couldn’t leave her there all alone.
But my mother in law have two sons, so after the visit in the emergency, I left the visiting mostly to them while I did her laundry and such. Which is also too much, I feel our own laundry is slightly more than I can handle, but I did help out, without making myself as sick as I did with my mum.

An acquaintance of mine lost her husband, I texted her a few times and arranged for a takeaway delivery to her door.

Another friend struggled and wanted me to visit, but we talked on the phone, and texted each other instead.
After my mother died and I couldn’t handle any visitors for the PEM she delivered me a present on my door.

I accept that any interaction I have will make me suffer. I accept more suffering depending on how much responsibility I feel towards the person involved and the size of the emergency.
I feel this is how I need to live my life. It means a lot to me that I’m still able to somehow step up from time to time. But if I push to hard, I likely would get worse on a regular basis, and I’m not really willing to risk that.

THIS ended up to be a LONG answer, and maybe not at all the kind of thing you are looking for!
Sorry about that! But I’m evaluating this- what to do and what not to do and how to handle this and that- on a regular basis, I’m looking forward to read other’s responses and maybe get some new input

 

[SnappingTurtle]

I'm sorry if there are expectations on you right now that will make you worse. Is it possible to get out of whatever it is?

@christiankatz thank you for your empathy. Just hearing a restatement of my aituation and concerns makes me feel less alone.

I am reflecting on this after the fact: I accompanied my mother, along with my husband, to urgent care. I was debating on staying home and letting my husband handle it, but I know my mom would have expected me to be there. She does tend to get overly worried. She was panicky but, it wasn't immediately life-threatening. It could have developed into one...so, we didn't take any chances and brought her to urgent care.

I accept that any interaction I have will make me suffer. I accept more suffering depending on how much responsibility I feel towards the person involved and the size of the emergency.
I feel this is how I need to live my life. It means a lot to me that I’m still able to somehow step up from time to time. But if I push to hard, I likely would get worse on a regular basis, and I’m not really willing to risk that.

@Hufsamor after my mom's event, I will need better guidelines. I felt that my mother would think me heartless if I left her in my husband's hands. I exerted way beyond my normal capacity, and now I am suffering another relapse. Thr worst part is I am still waiting for my mother to acknowledge my sacrifice. She apologized for "ruining my schedule", which was totally lame and not the point. I acted with love and concern to ensure her safety and health! If she can only acknowledge that I was going to and am now crashing hard, I would feel better about having done all that.

 

[Hufsamor]

@SnappingTurtle
Im so sorry about that.
I’m very lucky that people around me mostly accepts my limitations and seems grateful for whatever I do. And if your relapse gets severe enough, you might not be able to step up at all next time…

 

[lenora]

If your husband could and was willing to handle your mother, he should have been left with her. What did your presence add to the situation except PEM for you?

Does your mother understand the depth of your disability? Not saying that she's not a caring person, but perhaps she really doesn't.

I'm older (74 and my hubby is 77). I have two daughters, one 50 and the other, in CA., who is 47. Last year, and more like the year before, I was terribly ill, unconscious even. The daughter in CA, immediately took a flight and the other was present by phone constantly. Due to COVID no one could enter the hospital. It didn't really matter b/c I was unconscious for days and was mentally "out of it" when I regained consciousness. If anything, I felt awful that the one in CA made a special trip for what was nothing she could do, anyway.
I was hospitalized something like 8 times over 9 mos. during that time period. Each time it was for something serious and they couldn't help in any way.
A meal (@Hufsamor's idea of delivering food to a friend) is great. My friends prepared food for us and that was greatly appreciated. My daughter here did the same....my husband took care of the washing and keeping the house in order. I talked to both daughters each day. As long as I have books to read, I'm rather self-sufficient, although my hubby helped answer doctors' questions and things of that nature.

I guess what I'm saying is this: We have to do what's right for us, and how we'll feel afterward. It's very hard to explain this illness to others, even loved ones. Tired is tired, right? (As far as they're concerned.)

I probably won't be able to visit our daughter in CA for Thanksgiving. Do I feel bad....absolutely, but would it help the situation any? No, not the way I'm feeling now. I hope they'll visit us in the spring. My husband will go and that's good....he needs a break also and I'll be just fine on my own. Decisions, decisions, they're hard. I also realize that I'll miss seeing my grandchildren as they're now in their teens. It would have been a good chance to get to know them at their ages. But like I said, perhaps they can all come in the spring. I just hope they don't feel compelled to spring a Xmas surprise on us. It's unnecessary, but doesn't mean that we don't love them dearly. Yours, Lenora.

 

[Rufous McKinney]

Reading thru this, I realized I"ve faced these odd issues of the ME interfering with normal functions that are sometimes important. Over much of my life.

I"m not at my mother's bedside. I wasn't there, for my daughter in the hospital eight years old.

Lately, I can't provide my older than me husband much moral support. Having to find strangers to drive him to the doctor, pick him up at hospital.

 

[lenora]

Hello @Rufous McKinney.....We do what we can. As long as your hospital can go to the doctor's office and someone can pick him up, then it's fine.

You were there close to when your mother died. I don't know about your daughter, but there have
certainly been no long term problems.

It's hard for all of us not to do our duty, so to speak, but we can only do the very best we can at the time. In an emergency, I'm sure you'd have the presence of mind to call 911 and have an ambulance sent for your husband. (Which, by the way is how these matters should be handled. It shows the need for in-home nursing, someone to help clean, etc. If we take them ourselves, we wait longer and it's not shown as an emergency on the file. We rather learned this the hard way....but an ambulance is always called now).

After spending a few days unconscious myself, I can wholeheartedly confirm that you don't remember a thing....not one thing, so it's a waste of time and energy unless you're able to sleep nearby. Sleep? What sleep....in a hospital? The nurses in ICU genuinely do watch out for the patient and it's probably the best place for a loved one to be. On the floor is when the help is needed. Yours, Lenora.

 

[Rufous McKinney]

I don't know about your daughter, but there have
certainly been no long term problems.

She was fine. I think I was mad, actually- as my daughter wasn't supposed to dart forth into moving traffic.

She was with her Dad, and he was walking with a toddler. Some lady waved my daughter across the street. In slow motion, a car hit her...broke her leg.

She did not even have a bruise. My husband, in contrast- was a wreck.

So I appeared early evening, made sure she would be Ok and then indicated I was going home. I looked at that chair, and no way.

Now wait, why was my husband not spending the night in that chair?

 

[SnappingTurtle]

I am so happy to hear from you all. I am sorry for not posting sooner. I have been crashing hard, with me waking in middle of night with really bad myalgia and neuropathy, among the usual symptoms. I had to canvel a visit feom an out of town friend. Was disappointed but it was necessary for my health.

Anyway, I eventually got the "thank you" I was looking for.

 

[lenora]

She was fine. I think I was mad, actually- as my daughter wasn't supposed to dart forth into moving traffic.

She was with her Dad, and he was walking with a toddler. Some lady waved my daughter across the street. In slow motion, a car hit her...broke her leg.

She did not even have a bruise. My husband, in contrast- was a wreck.

So I appeared early evening, made sure she would be Ok and then indicated I was going home. I looked at that chair, and no way.

Now wait, why was my husband not spending the night in that chair?

Hi Rufous....Well, you said he was "a wreck." But more than, the assumption is that the mother carries out these duties. Nurses are generally excellent with children, so I'm sure she was fine. We just can't do it all, no matter how hard we try. Yours, Lenora.

 

[christiankatz]

I am so happy to hear from you all. I am sorry for not posting sooner. I have been crashing hard, with me waking in middle of night with really bad myalgia and neuropathy, among the usual symptoms. I had to canvel a visit feom an out of town friend. Was disappointed but it was necessary for my health.

Anyway, I eventually got the "thank you" I was looking for.

I'm so sorry you're still crashed from being supportive, @SnappingTurtle. You're better than I am, as I would have likely stayed home. I'm sure we'd all like to be there for our loved ones, but it's incredibly hard on us. It's too bad they don't usually understand. Hoping you'll have another chance to see your friend, and I hope you'll recover SOON.