For those who are low functioning, how do you balance where to spend limited energy?

[SickOfSickness]

I too am behind on doctors and papers and dentist and am focusing on survival first and foremost. Trying to figure out where some other things might fit in, like having a friend visit, is hard. I guess I need to think about what the payoff is for me and if it's worth it.

Same here, but after so many years, the backlog has built incredibly. It is stressing me and getting out of hand. So I would try to not let it grow beyond a year's backlog.

Artsu I'm trying to find some way to have some of those possible mood boosters in there balanced with some of the essentials like doctors. I guess I really need to evaluate what activities are more mood boosting than stressful. Maybe that is where my issue lies, I haven't determined that yet. But I will, now that I realize the issue more. Thank you.

I don't do this well. First I'm bad with prioritizing enough that the essentials get done. Second I do many little things which I think help my mood, but they are stressful too. I believe there are other relaxing activities I should be spending time on, but I have trouble starting them and staying with them. I want to stop them and do something on the computer instead. For me it's a big problem.

Third with socializing, I drain my energy too much, but I have trouble limiting it. I can't just tell my friend to go home early when they've already driven just to see me. I wish I could have smaller more frequent socializing instead of what I have.

Even with posting or chatting on this site, I don't know if I can spend the energy. I need to have contact with other ill people who understand, but I'm not getting enough things done. I need and want to see a therapist, but that is a lot of energy to spend.

Sometimes I just worry that I am going too long without seeing people but I guess if I don't feel like seeing people I should honor that. I've found with this illness the wisest course seems to be going with doing what I feel like and not pushing for things that I don't feel the desire for even if I think I ought to do them. My gut and my heart seem to guide me in the right direction more often than not, so I should tell my head to be more quiet.

That sounds good, you are guided by them, I wish I could do that.

I think the level of support we have -- and many of us have none -- significantly impacts this question. I think any activity level scale has a lot of built-in assumptions or vagaries with regard to how much assistance a person has.

(...)

If I didn't have a partner to do so much of the household work, I'd have to put cooking, shopping, taking out the trash, and minimal cleaning up there in basic survival and would never get to "basic outside responsibilities" until I was closer to a 4 on the PR activity level scale.

Yep.

In particular the cognitive problems are less for some ways of using my brain. I think it is more that I start to like the things which I can do and achieve, rather than doing them because I like them. This is about doing more for less payback, its kind of addictive once you figure out what you can do.

That's smart. I try and do this, but I just don't do well at it. I need to change this. It's getting in the way. I also don't know if I can change it. I've functioned this crazy limited way for so long.

 

[SickOfSickness]

i talk to an elderly aunt that doenst live near me i try to call her once a day because they had told her she was ill and had limited time to live...i love her and never want anything to happen to her of course..but im wore out just from the once call a day...hard to believe a phone conversation can make you so tired but it does...
these illness are so horrible

YES. Many phone calls drain me a lot. Personally, having to speak out loud takes a lot of energy from me. Listening does too, sometimes. For listening it depends on if my brain is foggy or if I have a migraine or headache.

I feel guilty about it, especially in real life. People usually have so much more energy, they can make small talk. I seem rude from not speaking much.

 

[Valentijn]

Third with socializing, I drain my energy too much, but I have trouble limiting it. I can't just tell my friend to go home early when they've already driven just to see me. I wish I could have smaller more frequent socializing instead of what I have.

I've gotten better at allowing myself to lay down when I need, when we're visiting my fiance's family or they're visiting us. It felt awkward at first (I held out as long as possible), but they don't freak out or get offended by it, and I can usually keep chatting while horizontal, or everyone else can keep chatting while I zone out a bit.

I even managed to do lie down in semi-public for the first time a couple days ago, while visiting my fiance in the hospital. It helped that there were only three other patients in the room, all with chronic illnesses, and occasional nurses, so I didn't even get funny looks. I think they all recognized that I was having problems, which made me feel a lot less awkward.

 

[taniaaust1]

Im currently about a 2 and a half on that scale.

Like everyone else I prioritise ..

My priority is those things which MUST BE DONE to survive or that doing them now will cause me less trouble in the future. I dont want to leave anything which will take me then twice as much effort to do later eg avoiding going to dentist falls under that high priority factor for me cause having something seen to earlier, causes me in the long run far less trouble and also ends up costing less money and I dont expect to be better at a future date. Leaving a small hole now could end up in major dental work later. So basically Ive alway got consideration on what is best for me looking across it on a large time scale which helps me to avoid future big troubles.

A priority to me too is also looking after my mental health. There are things I NEED to do in life to keep me happy. I prioritise those too as I dont want to end up with depression and I think living with this illness happily is far easier then ending up with more issues due to stress causing one to crash or feeling worst due to depression. So my mental health is as much as a priority as physical health.

So my priorities are necessarily ones eg showering if I smell or have to leave the house. I usually shower twice a week, I wash my hair once a week or fortnight.

I shop for myself once a week (as I crash with doing a large amount of shopping so I have to do this weekly not fortnightly). The food basics shopping trip 5 mins away from my house (another drives me), this trip also caters for my mental health as it gets me out the house and also caters to social aspects for me. Its my outside social life. I only visit family outside my house a few times a year and always for reasons eg a special birthday or xmas.

My social need is met by twice weekly visit to my home from my boyfriend, weekly basic food shop trip where I can smile at someone and online in which I can completely control how much i have to interact. I dont put pressures on myself as far as social stuff goes eg I only check my email and pms when I feel like it. That can be once a week or at times once every few months. People do get responded to but it may be a very long time later. I dont want to put pressure onto myself as pressure is damaging to my health.

As far as housework goes.. well I just cant do it all. This may not be the best but it is what I do as its what makes me feel happier then the other option of what happens when one cant do it all. I tend to do the housework on the easier rooms of the house but leave the rest. I get a bigger sense of achievement knowing Ive cleaned hallway, bathroom, loungeroom, bedroom, computer room then just doing that kitchen. I tend to prioritise those things which make me feel good emotionally from doing them (even if I are worn out afterwards).

Im very fortunate that I can currently do that as my boyfriend will do all my dishes on one of his twice weekly visits to see me. Im happier with the house all clean and just a trashed kitchen (thou I do then miss meals as I hate to cook in messy kitchen), then I are with all the rooms messy some as Ive been using all my physical capacity on the kitchen. I can stay on top of the house stuff currently with just my garden and kitchen being left. (Yeah I realise most probably would focus on kitchen as the priority but that is depressing for me as it just gets messed again so quick and is always such a big job and I just cant keep all the house clean).

I only do things like change my clothes when they are smelly or showing as being dirty... Usually live in my nightwear and get dressed only twice a week. (Thou I was very fussy with things before I got sick, getting dressed isnt a priority to me if no one is going to see me anyway. I'd rather use my limited capicity elsewhere eg have more energy and be weller to come online and chat here).

I keep limits to the amount of medical appointments I go to..often medical stuff just has to wait due to the limits Im having to stick to. I know how much I can do in a week without causing crashes. I tend to just work on one medical area of this illness at a time as otherwise its all too much for me if Im seeing too many specialists at once. (currently just working on getting sleep stuff sorted and keeping my appointments down to just one a week).

When Im going throu long term far sicker periods.. the priority at times can end up being just not doing anything which majorly worsens me. At those times I stop all medical appointments as it just usually isnt worth having one appointment then being far worst for months due to that one appointment. When Im like that, Im not capable usually of getting to them anyway due to being completely bedridden. Just eatting and drinking then became the priority of life.
Benefit of medical appointment is less then the consequences of going.

Balancing limited energy all comes down to best ways for survival for that individual which varies according to their individual situation eg do they have a partner or others to help which certain things can be left that the other can do.

 

[SickOfSickness]

Like everyone else I prioritise ..

That is all so smart. Thanks for sharing.

 

[Enid]

Alex - your post 3 - I'm behind on everything - at least the encephelo part has eased and I recognise neighbours - short answer is the chase to find the cause of this illness affecting millions in varying degrees.

 

[Ocean]

Thanks a lot Ahimsa. I plan to get the testing done and if I'm diagnosed with it I will keep that list to discuss with my doctor. I do everything sitting/laying down too and take pacing very seriously. If I don't the consequences are not pretty!

Thanks so much everyone for your replies. It really helps to "normalize" my experience and make me feel less alone, seeing that we all share many common approaches to this problem.

Valentjn, I've done the laying down in public things too. We have to do these things to take care of ourselves. I hope your fiance is okay.

 

[Valentijn]

Valentjn, I've done the laying down in public things too. We have to do these things to take care of ourselves. I hope your fiance is okay.

He was feeling fine even when his glucose was super high, and now that it's under control he's feeling "great" and being very active. He's still adapting a bit to having diabetes though and having to keep track of his food, making sure he has snacks, etc.

 

[Ocean]

He was feeling fine even when his glucose was super high, and now that it's under control he's feeling "great" and being very active. He's still adapting a bit to having diabetes though and having to keep track of his food, making sure he has snacks, etc.

Oh no another health condition to deal with! Glad it's under control now though. I wanted to mention I was thinking of what you said about laying down when with others and it was good to hear. I am going to have to start feeling comfortable with that too because considering that I am laying down almost all the time, it seems the only way I will be able to visit with people is if I let myself be comfortable with laying down during the visit. One problem though, it does take up a lot of room and might not leaving much seating for others!

 

[taniaaust1]

I am going to have to start feeling comfortable with that too because considering that I am laying down almost all the time, it seems the only way I will be able to visit with people is if I let myself be comfortable with laying down during the visit. One problem though, it does take up a lot of room and might not leaving much seating for others!

There is always the floor but then one can get stuck and unable to get back up.