The Week: I'm a 40-year-old stay-at-home kid - and it isn't so bad

I'm a 40-year-old stay-at-home kid - and it isn't so bad - Diane Shipley

At the start of the second semester of my sophomore year of college, I threw some clothes, books, and a packet of chocolate-chip cookies in a backpack, locked my room on campus, and took the train home, where I moved in with my mom.

Over the previous six months, I'd struggled with extreme exhaustion after performing the most routine actions: sitting through a lecture, cooking a meal, getting out of bed. Every night as I tried to study, my legs and back spasmed in pain. I would try to read the same paragraph over and over, taking in nothing as my eyelids drifted closed. I thought that if I took a couple of weeks off, I might regain my strength. That was 20 years ago. I'm still here.

 

Good article.

Very concerning though, for all adults who depend on others for much of their physical and financial assistance. What happens when Mom gets too old to look after the pwME? Nursing home? How dreadful a prospect. With uninformed staff who think ME is psychological.

The longevity of this condition - the community tries to emphasize only about 5 percent recover, but those in the helping professions lacking much knowledge about ME still say things like "what are your plans for the future?" As if the pwME is lazy, and unmotivated. If they would just get going and show some initiatve. If only they could.

 

@NelliePledge

Yes, I think preferable to live alone than be abused by some in nursing homes.

 

I worry about this too. What happens when I can't help my son anymore ? or when I am gone .. There are no good answers

 

Would be best to not have to be in a home. But how do afford to stay in your home. My son has very very low income and could not afford this

 

I don't understand the need to put a shine on the fact that one's life is stolen. What happens if anything happens to her mum. There seems to be rose tinted spectacles on. I am grumpy today. I just think it's not OK so no point fooling oneself that it is. Or worse still, putting across the message that it's not so bad really to the public when there isn't much sympathy for us in the first place.

 

I very much agree with all who said the title is problematic. Seems perhaps too accepting of the awful circumstances.

We can't win, eh? Too accepting, or not accepting enough.

When I was first diagnosed I was told by a support group member to accept that I was never going to recover. I was also told by a health professional not to give up; essentially keep fighting, and don't accept this state of being.

A fine line to tread. I resolved to accept this dreadful illness, only on a day by day basis - just for today, and do all I can to spread awareness, and understanding.

 

Is Diane Shipley the author and the person in the story?

 

"Oh come on," she said. "You don't want to live with your mother for the rest of your life, do you?"

I don’t live with my parents because it was abusive; but at the age i’m at now, after 20 years of hell. If a therapist ever said something like that to me; presuming they’d been made fully aware of the situation and history.

I don’t think I’d have the self control to withold the full wrath of my disgust and anger; nor would i even want to anymore.

Its a ridiculous farce what we have to put up with from people.

 

@Hell..hath..no..fury...

" the ridiculous farce we have to put with" - no truer words were spoken!

 

This. To say nothing of the fact that I cannot think of a disease LEAST suited to nursing homes given the problems with sensory stimuli and delayed diurnal rhythm (I took a full dose of Melatonin last night and still didn't fall asleep until after 2am and woke at 5am, only to fall asleep at 6:30am; though it's supposed to get up to 80 degrees today, I'm sitting here freezing in multiple layers of jammies and probably won't be warm until about 10-11pm tonight).

I'm really surprised this is not a much bigger issue in our community. To be honest, I feel like we're all sitting around waiting to finally win the treatment lottery when that's not going to happen for a long time. Yet people need much better management NOW. I'm 46. I got sick in graduate school (indeed, at the end, was requiring home care service in my campus housing). I'm even worse now. For those of us on Medicaid, there is no federal requirement for states to provide home care service. I'm lucky that my state does provide it but rations it severely, privileging quadriplegics (but not paraplegics, who are often ineligible) and stroke victims over people like myself who can still get to the toilet but on bad days can do little else.

Two years ago when my condition was getting even worse, my case worker and I started talking about my options. We both agreed a facility would not be suitable for me. He suggested adult foster care and I could see where that could be a potential solution. But it would only work if it was a home where 3-5 ME/CFS patients were together and the staff were trained in how to care for ME patients--something that sounds like pie in the sky at the moment. But the HIV community did this for their community. And it would be a lot more helpful than Awareness Day resolutions .

 

I'm not expecting, or waiting for, a cure.

Even if it was an available option, and it isn't, I wouldn't accept the lack of control, privacy and choice that a nursing home would inevitably entail.

It is unlikely I could accept home help as it exists in the UK today, I've had enough difficulty dealing with people I knew helping me when it was needed. Enough so I had them stop even though help was still needed.

I can't even get a social worker who will stay on task, if there is no contact for 28 days then I'm discharged or whatever term they are using this week. 28 days is not a long time for me.

I am probably not a typical PwME, but I to struggle to see how a nursing home or equivalent could possibly do more than keep someone with ME alive, at great cost, both financial and, more importantly, cost in the effect on health and QoL.

 

Exactly my thoughts. The cost is too great plus, how long they manage to keep the PwME alive while inflicting and torturing said person with their version of help is anyone’s guess.

The potential for finding ourselves in this situation in the future haunts many of us.

 

> I'm really surprised this is not a much bigger issue in our community. To be honest, I feel like we're all sitting around waiting to finally win the treatment lottery when that's not going to happen for a long time. Yet people need much better management NOW.

this.

not to dispute the need for treatment, but this is one of those problems that are treated as if they do not exist, kind of like m.e. itself. to my knowledge we don't typically, or ever, demand services of officials. we don't even have an aids buddy network. we don't even have legislation like the ryan white act or the pidd act.

when you can't make or get food or clean, you ... CAN'T make or get food or clean.

can whitney dafoe cook breakfast, lunch and dinner? afawct, any pwme is only one exposure or unknown body event from becoming sicker, even if his or her course has been r/r or stable. the prevalence of housebound/bedridden is not trivial. some have been rejected their whole lives by their families. why? because sick.

we don't even have the NON-housebound/bedridden services hiv/aids has. http://www.nytimes.com/1997/11/12/us/new-challenge-to-idea-that-aids-is-special.html . an online discussion among pwhiv did not dispute anything in this article, and instead seemed to hope that somebody would bring those services to every disease, iirc.

so they were hoping for pw-non-hiv/aids-diseases.

hope is always advised, so it must be delicious.

bedridden pwme get to have hope for breakfast, lunch, and dinner, not made, not brought.

hope cleans the mold and dust that make them significantly sicker. hope picks up prescriptions. hope changes air filters. hope clears up life-threatening bureaucratic problems. hope gets teeth fixed before the infection hits the root. hope gets you all the non-medical and medical services and professionals you need. got an immune comorbidity? dial up hope, who will get it fixed.

can't dial because you can't lift your arms or talk? no problem, hope will do that for you.

 

So well put and true, this almost made me cry. The only reason i didn’t shed a tear is because i don’t have the energy to produce one right now.

We need these bullet pointed and posterized

 

I don't know if I have much company in my demands, but I regularly do this. I talk about accessible housing, housing for those with extremely low income (accessible housing for those with extremely low income), home medical services, physician education, accessible medical care, anything else I can think of, or see someone saying they need but can't get.

Temporary homeless shelters for ill/disabled people is also a need. If people need to flee abuse, there's nowhere to go.