Adapting without making myself worse

[arina83]

Like so many here I have really horrible fatigue that doesn't improve with rest, eating, sleep etc. I am ridiculously stubborn...I've had to be. I really do not want to become competely helpless and imprisoned by the fatigue, but doing what I've been doing for what seems like forever isn't working anymore (muscling through the fatigue and then spending a month it bed). There's a lot I want to do and need some help figuring out how, since I don't have the energy. Just getting out of bed and making breakfast is cripplingly exhausting but I make myself work anyway since I know resting the whole day will not help.

I have a couple work related problems that I was wondering if anyone has any suggestions for. Am self employed...one business now and another business in R&D.

-my lungs don't allow me to talk for long, but there's stuff I need to do for work that I think requires talking (market research, webinars, live streams, videos, sharing information & educating people). I'd be the better person to do these for many reasons but my lungs give out randomly. Ideas on how to do this?

-current work involves watching a machine work. I need to be able to monitor how its going and if there are problems. Standing all day kicks my butt. Has anyone been in a similar situation?

-Are there any resources to help small business owners make their business more accessible for people with disabilities?

-Is it possible to be happy with health issues like this? I enjoy working but it seriously kicks my butt. Everything kicks my butt. I feel like I made a mistake not getting married & having kids, and while I know that's also fatigue inducing part of me thinks maybe I would've been happier if I had gone down that road instead. Though saddling another person with someone like me isn't exactly fair.

 

[Trish]

That sounds impossibly difficult to maintain, @arina83. No wonder you are crashing and ending up in bed for a month.

Is there any way you can pace your activities and use aids. For example, can you sit instead of standing to watch the machine? If you need to move around the machine, can you use a wheelchair, or even an office chair on castors? Can you script the webinars and get someone else to read them?
And build into your days regular lying down rest periods.

As to the getting married and having kids option. Been there done that, just as exhausting and ended up as a single parent needing to work to support us. Life choices are so hard. And sometimes hard not to think some other option might have been better when we're struggling.

I hope you can find some solutions.

 

[Invisible Woman]

I have no easy answers for you @arina83 but would agree with @Trish's suggestions.

Being part of a couple vs being single with ME is something that's come up a number of times over the years. There are plus and minuses on management to both. I also know people who ended up divorced and losing they're homes as ME can be tough on relationships, so the grass isn't necessarily greener. Partners still have to work, need some life of their own.

We all have to work out what works best for us when living with ME. Something that might be worth the PEM payback to me, or the sacrifices I would have to make to enable me to do something and try to avoid PEM might not be worth it to you and vice versa.

Just getting out of bed and making breakfast is cripplingly exhausting but I make myself work anyway since I know resting the whole day will not help.

As I said we are different and have to find the approach that suits us best. In my own case resting, for however long I need, will not cure me. It will however stop me deteriorating further. Something I wish I had realized many years earlier than I did. Continually pushing ourselves, even though our bodies allow us to do it at the time, has been a slippery slope for many ME patients.

 

[arina83]

Thanks @Trish & @Invisible Woman (but you're visible to me ). The downsides of marriage are what keeps me from pursing anything, though the loneliness really gets to me and even more when I realize that I'll be completely alone when my dad dies. I love my animals and they're the one source of joy I have but its not really enough.

Part of the issue with work is that the machine is very tall. I have to step up onto a thing and then onto a 2" block of wood to be able to see and do anything. Some things I can see from the ground but other things I can't. I'm thinking maybe some kind of camera system and custom chaise lounge (the space is very narrow) would work, since there are stop & run buttons I can reach from the ground. The problem is the cost of it. Likewise a zero gravity chair and desk would make the computer side of things so much easier, but they're expensive. Both of these things are now a make it or break it thing with my health & work...I won't be able to keep working if I can't make these changes but they're too expensive. I've looked at some things that would definitely help but it'd take thousands of dollars to do which we just can't swing.

I haven't been able to do any of the normal rest stuff, which makes things worse. Normally I would take 2 days a week off but I can't anymore. I also have 3 ponies and me doing the feeding & manure pickup has freed my dad up to work more. The exercise has helped but the no rest from it hasn't helped. It was proving too much for my dad due to his injuries.

We used to have a reliable horse/dog sitter but she out of the blue said she couldn't help us (right after she was out of work for a while and just when she was going back to work). Stupid mask laws mean I can't interview any new people...I can't get enough oxygen through a mask.

The new puppy is also a LOT of work, and not having the option for this dog sitter to take her for a couple hours every day really screwed up my plans since I was counting on the help for when things are bad. The good news is the deep pressure therapy this puppy provides is pretty much the only effective pain management I have. MMJ is limited. Hot baths are limited too. Meds flat out do nothing.

I just got the rude awakening from today's frost that put me into ridiculous agony. Between the fatigue and pain I have no clue what I'm gonna do. I've thought about disability, but I really want to work. I've done the just lie in bed and watch tv/play video games/read thing and the depression of it was killing me. I probably couldn't even get help since I can do the pony care, even if it basically kills me for the rest of the day.

I'm between the rock and hard place where the work I'm doing is slowing killing me but the things that make it all worth it (ponies & puppy) are the hugest energy sucks.

And I just remembered another part of the problem. I need more carbs. Must have cake. Place where I get cake is closed. Arg. Need carbs. Cake = life!

 

[Invisible Woman]

It's a hard place to be @arina83. Too sick to be able to work without payback and not ready psychologically or otherwise adjust to or make the leap to disability - if that's the point you're at.

I've thought about disability, but I really want to work. I've done the just lie in bed and watch tv/play video games/read thing and the depression of it was killing me.

I don't think anyone here necessarily advocates staying in bed all day - unless you actually need to be in bed all day & at times I do. Not all the time and not necessarily all day though.

Taking what would qualify you for disability out of the equation - I don't know what would be necessary for you to qualify - being too ill to work isn't or not isn't an all or nothing.

Some can work part time - but maybe at great sacrifice elsewhere in their lives. Some have hobbies, some can garden or do some voluntary stuff.

I'm not saying that you're at the point to make such a decision but just that it's not that black and white. If you come to that point many of us here have had to go through that transition and can share our experience. It's a very difficult and scary time and one of the many areas where ME patients could do with a lot of support.

If adjustments at work are too expensive and your Dad is already doing all he can then I wonder if some help at home might be affordable?

With the ponies - are there any local pony clubs that might have youngsters who would love the experience of helping care for a pony (not necessarily riding them) but can't afford one? When I was a youngster I adored spending all day with horses in school holidays, loved riding but was equally happy mucking out. I was very lucky that the stable owner was quite happy to let me help out and it saved them money too.

 

[arina83]

You have no idea how much better I feel now that we're having this conversation @Invisible Woman. Not even people in the Ehlers Danlos, POTS, MCAS and gastroparesis support groups really seem to "get" where I'm at. Thank you.

Normally people get to experience life before their health declines. I've been struggling my whole life. I'm not even 40 yet and my 66 year old dad who has a bad leg and back and is overweight can run circles around me.

I'm also faced with 3 huge issues now...the current lockdowns & all make it pretty much impossible to get help since complying with them is too much money, we live in a rural area and there isn't much here and we have had zero luck finding reliable help.

Plus I have always been very active and yes the physical stuff kicks my ass but I really enjoy doing it.

Is it being disabled if I need to spend most of my time & energy managing & treating symptoms?

I'm just really missing the world as it was 30 years ago. When you could actually rely on your neighbors for help and there was just more of a social fabric and integrity.

With the horses I have to do pretty much everything myself...daily stuff plus nutrition, vet, hoof. Everything but their teeth since I can't. Every single local vet has made mistakes that have almost killed them. Every single hoof care person was just someone I paid to hurt them.

And me being me, I am now allergic to one of the treatments that helped me the most...IV saline. Because yay me I'm allergic to plastic. Nothing makes me feel as good as I did when I could get IV saline and it sucks its not in glass anymore.

 

[Invisible Woman]

@arina83

I'm just really missing the world as it was 30 years ago. When you could actually rely on your neighbors for help and there was just more of a social fabric and integrity.

Yep. I grew up in a community where you always helped each other out, respected each other and were considerate. Whether you need a hand or not, life is a lot better when you know people around are supportive.

With the horses I have to do pretty much everything myself...daily stuff plus nutrition, vet, hoof. Everything but their teeth since I can't. Every single local vet has made mistakes that have almost killed them. Every single hoof care person was just someone I paid to hurt them.

Unforgivable! I admit I am very, very fussy when it comes to my animals. Thankfully I've been lucky with my pooches vets. It is vital that anyone who has contact with your animals is trustworthy.

The whole do I try to continue work, can I afford financially not to is so hard. Although I had a partner and we had a joint mortgage, I earned a fair bit more than he did at the time. We could just manage to survive on my wage alone but not on his. We'd worked our socks off to buy our home and we risked losing it.

Then when you identify yourself with what you do. My self image was very bound up with my career. I loved my job and being constantly challenged by new things, losing that was a huge adjustment.

Among my work colleagues I had some status - I wasn't a CEO or anything but I was very good at my job and mentored and provided support for more junior colleagues. It's hard to lose the status of a competent, reliable and respected person. Especially when the welfare system (in the UK at any rate) treats you with suspicion as though you're deliberately giving up a well paid job to live on a pittance.

Of course, while all this is going on you're still trying to keep all those plates spinning in the air. Feeling like your running flat out just to stay in the same place.

Everyone 's situation is slightly different but I reckon most here will be familiar with many of the struggles. I was "lucky" and didn't get sick until I was 30 or so. Some members have been sick from a very young age or are carers for their children. Some are sick themselves and care for sick offspring. We won't necessarily have answers but there'll always be someone who understands.