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

[Ocean]

Using the PR activity level scale, those who are at 2 or lower, how do you decide how to spend your limited energy? (PR activity scale below)

0 - Bedridden constantly 1 - Mostly bedridden 2 - leave house once a week, concentrate 1/hour a day 3 - leave house several times/week, two hours work/activity at home a day 4 - 3 to 4 hours of work/activity a day 5 - four to five hours/activity a day 6 - six to seven hours/activity a day 7 - able to work full-time but with difficulty 8 - near-normal activity level but still symptomatic 9 - normal activity level, mild symptoms 10- fully recovered

I wrote a long post but I'm tired and don't feel I'm being clear so for now I'm editing it and keeping it brief. Basically, for those who cannot leave the house often, and who can't do much at home, how do you make decisions about doctor's visits, social visits, hobbies, and other exertion? When the cost of overexertion is high, long crashes and possibly not returning to previous level of functioning after a crash, it can be really hard to decide how to use limited time and energy. How do you decide how much of your energy to devote to rest, to medical visits, to socializing, hobbies, even maybe some income earning activities from home on occasion maybe?

I'm not looking for advice per se, rather more to hear how others deal with this issue. Thank you!

 

[Artstu]

I'm at level 3. very simply I choose to do things I find rewarding and that help me keep as healthy and mobile as possible and also boost my mood, all the rest can wait.

 

[alex3619]

How do I choose? Prioritization: those things necessary to survive come first, those things necessary to stay sane come second. Most of the rest never happens.

I am five years behind in paperwork. I am years behind in dental care. I am a year behind in medical issues. When there is not enough energy of the right kind (not every activity is equal) some things just don't happen.

I am kind of level 1.5 or level 2.5, this scale does not fit me well. I class myself as moderate on the ICC ME scale as I am mostly housebound. I cannot even get out once a week, but I can spend several hours a day doing advocacy on the computer.

Bye, Alex

 

[ukxmrv]

I'm usually around number 1 on your scale (sometimes 0 or 3). My priority needs to be on personal maintenance. Having a bath each day is one of my goals. I then concentrate on being able to brush my teeth and eat, take supplements, clean bed clothes, good healthy (for me) food and as clean/tidy an environment as I can. Then financial things like banking. Apart from my husband I can go weeks with out seeing anyone else if we don't have a current home-help or cleaner. I order things on line and try to keep up with family and friends birthdays to keep in touch with them.

When I am a little better and can go out I need to do the absolute important medical appointments, if very strong see a dentist etc, campaign on ME issues and get to the post office/shops. Very little socialisation. I try and get to cultural things like the opera, ballet, theatre, art galleries but I am so weak and ill that even in a wheelchair and with booked tickets I can't always get to them. Very frustrating. Socialising is so hard and I find it hard to be physically strong enough for conversation. These things may only occur occasionally.

I find that campaigning on ME issues is a very satisfying thing to do and try to do as much as I can from home. Sometimes I am well enough to go to a demo or a local meeting and that gives me a sense of community and I've made real friends that way. The internet helps as I am often too weak to talk to anyone on the phone but belonging to internet group helps with the isolation and loneliness.

Prioritising and discipline are needed to keep getting the maximum I can from a very limited life.

 

[Ocean]

How do I choose? Prioritization: those things necessary to survive come first, those things necessary to stay sane come second. Most of the rest never happens.

I am five years behind in paperwork. I am years behind in dental care. I am a year behind in medical issues. When there is not enough energy of the right kind (not every activity is equal) some things just don't happen.

I am kind of level 1.5 or level 2.5, this scale does not fit me well. I class myself as moderate on the ICC ME scale as I am mostly housebound. I cannot even get out once a week, but I can spend several hours a day doing advocacy on the computer.

Bye, Alex

Alex I'm somewhat similar. I don't get out once a week either. Maybe every two to four weeks. And those outings are basically for doctors only. 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. It's good to know I'm not alone in taking this route of doing essentials and not getting to much else. I was feeling pressure about getting to certain doctor visits I haven't managed to get to yet, but it just may be that I can't get to them and that's how it is or that I don't get to them for a long time. Thanks for sharing your approach and situation.

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.

ukxmrv,
Thank you. It really helps me to hear stories of those who are at a similar level as me. I'm seeing that most are taking a similar approach to what I've been doing and maybe that's really all there is to do. Work within our limitations. Do what is essential to us and try to fit in some pleasures and rewarding activities in there too when possible. Socializing is really draining and hard for me too but some of it depends on the person. People who have a more calm energy and nurturing spirit seem to work best for me at this point. People who are very high energy and have somewhat of a draining presence and are a bit more oblivious to those around them are the least easy for me to be around.

I haven't had a real social visit in a long time because I worry about how much it will drain me and don't really feel up to it with many people and it's harder too when people don't understand the illness and how it affects me. Maybe I just need to let myself have this time away from people and not feel pressure to socialize if I'm not ready for it. 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.

Thanks everyone, reading these responses is a big help to me.

 

[Valentijn]

I'm currently a 2. I always go to doctor visits so far, but usually feel too crappy to make it to the store. I try to cook an easy dinner every night, and keep dishes rinsed, but I usually don't clean up the kitchen or load/unload the dishwasher. I start laundry, but never fold it anymore. Usually I can vacuum once every week or two.

Basically I do what I can while staying within my limits, and try not to feel bad about slacking on the rest. Social visits are rare, and at my current level we're trying to get people to come here instead of us driving an hour or 90 minutes each way to visit someone.

 

[SOC]

I am one of those fortunate enough to have a husband who helped me to survive when I was at my worst. 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.

My priorities run along the lines of:
1. basic survival -- eating, drinking, making it to the bathroom, taking meds
2. basic personal hygiene -- shower/bath, hairwashing, teeth brushing, etc at a frequency compatible with current functionality
3. medical appts -- as needed, sacrificing some person hygiene if needed to rest for appt (I never had to get myself to appts, though)
4. basic outside responsibilities -- email/phone friends, short personal visits when possible, phone chores (fortunately husband did bill paying, etc)
5. work a few hours at home, because we desperately need the money. I couldn't do this if I didn't have a husband who cooks and cleans (after a fashion).

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.

 

[alex3619]

Hi Valentjin, me too as far as dishes and folding. When was folding clothes life-saving? Ocean, my experience on choosing where I spend limited energy when I have some is that some activities are much easier than others. 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. Bye, Alex

 

[Sparrow]

I had a LOT of trouble with this when I first became bedbound, using up tons of energy stores going to doctors who didn't end up being able to help me, trying to respond to friends and family who wanted to know how I was doing, learning everything I could about ME/CFS treatments, trying to hold on to aspects of my "normal" life, etc. I was pushing my limits constantly and suffering for it. I think I'm starting to get the hang of it better now, though.

I'd say that I'm about a 1. I can get to the bathroom and back without trouble, but otherwise need to stay lying down on the couch during the day. When I have appointments, my husband takes me in a reclining wheelchair. Like SOC, I thankfully have a husband who's been caring for me, and he is handling most of the essential home/administrative duties I used to take on. I am also lucky to be in a place that provides government-funded in home care for people who need it, so we have somebody who comes twice a week to help bathe me, etc (though even still I'm not well enough yet to have my hair washed both times). That's improved my hygiene a lot.

Priorities for me now are
1. Eating meals, taking my supplements, walking back and forth to use the bathroom, etc.
2. Talking and interacting with my husband (because it's vital to our relationship, and makes me feel happy and whole)
3. Doing low-key mental things to keep me sane (e.g. reading, computer, TV, etc. when I'm able).

I'm doing a lot better now that most of the time I have the reserves for some of numbers 2 and 3. When even a little of that was enough to burn me out, I was constantly pushing my limits even on my best days, because otherwise it just seemed too unbearable.

I go to medical appointments when I feel that I need to (not generally for assistance, but for keeping my insurance happy, etc.), but would be thrilled to stop those completely. I very rarely find that I get any benefit out of them anyway, and have long ago stopped asking about new symptoms or concerns. I am now actively trying to avoid referrals to other specialists, whereas early on I fought hard to get those.

I've cut down any kind of social contact outside of my husband to once maybe every couple of months or so. This was hard, but it was just taking too much out of me, and often sets me back not insignificantly. I've also cut out keeping up relationships via the internet. Again, it was too much of a strain. Now I pop into places once in a very long while, but I don't even answer my e-mails anymore unless I happen to have energy to spare in that moment. If not, they go into the void and I try to appreciate the sentiment and let go of the feeling that I must respond.

I've also almost completely cut out any activities that were administrative, or stressful in any way. To the point that I've even had to stop considering changes to my treatment protocol for the time being. I'm glad that it's slowly improving me because it could be that way for a while yet... Again, I just found that I was losing way too much ground doing stuff like that. I have basically zero responsibilities now and as few obligations as possible, but it's helped a lot in my rate of recovery. I realize fully how lucky I am to have the option of doing that. I admire all of you who are using your limited resources for advocacy. Someday I hope to, but at the moment it makes me angry and stressed rather than inspired, and that sets me back tons. I've learned to deliberately avoid my hot button topics most of the time for now.

Basically, I exist in as stress-free an environment as possible, and rest or do things that feel enjoyable when they seem like they won't take too much out of me. It was a difficult thing giving up some of the other pieces, but I think it's been one of the most important factors in the improvement I've seen so far. I've gotten much better now at letting things just fall off the radar, even if I once would have considered them essential. The overall recovery is more important than whether my teeth don't get brushed for one day.

And if some days I write a reply like this rather than brushing the teeth, I've learned to be okay with that too.

 

[Ocean]

Thanks everyone. So much of this sounds familiar. Like some others here am very lucky to have a husband who takes care of housework. I wish I could have some in home care covered by insurance but it's not available to me.

I haven't even finished getting some testing and seeing some specialists since first getting diagnosed and there are doctors I still need and want to see but I guess I need to take it slow and not get so frustrated with myself for taking so long with it. No doctor is worth going to if going there puts me in a huge crash and much lower functioning than I was beforehand.

I think I'll have to think long and hard about which social visits might be worth the energy cost. It helps me to hear that others find socializing a drain too and have to greatly limit it. I don't feel as bad when I see that it's somewhat normal among those not doing well. I am taking it easy on replying to emails and such too. It's one of my goals for the new year to not push myself in those kinds of things when I'm not up to it.

I also have trouble summoning up enough mental alertness in the moment to respond to people's comments about my illness so I have to work on some predetermined responses so if I do see people I don't end up feeling bad over my inability to respond as I'd like. Of course people will want to know how I'm doing, but then usually they may end up making comments that are inaccurate and it does get tiring trying to correct them in the moment when I'm unwell and out of it. But if I don't correct them I end up feeling bad about it later. I guess this is sort of a side issue but is just another reason why socializing can be exhausting.

Thank you so much for the feedback, it's a big help and gives me a lot to think about.

And Sparrow, yes, brushing teeth sometimes fall off the wayside for me as well. Maybe more often than I'd like to admit. I've been getting closer to your approach of just letting things go that in the past felt important to keep up with, but I have som ways to go on that still.

Thanks so much everyone for using some of your limited energy to respond to this. I really appreciate it.

 

[Carrigon]

It varies with me depending on how I am each day. But mostly, it's basic survival. I cannot go out every day. I usually can't go out once a week either. I leave the house two to three times per month. Grocery shopping, odd errands, doc appointments are usually every four months.

The rest of my time, I find I can't even sit up for very long. I start to get lightheaded and usually feel I have to go lay down. So I don't spend very long in the living room. I might last through a movie, but there are plenty of times when I can't.

Showers are when I'm feeling up to it. As is everything else. Cooking usually triggers POTS, my blood pressure drops and I end up having to go lay down.

I can surf the net laying down in bed, so that's kind of the extend of my daily activities. Some days I'll work on the computer when I'm up to it. Others, just watching movies and reading articles, all from the bed.

My life is severely limited by this disease. I'm not even well enough for the senior activities they do in this building. I tried twice. Each time I was too sick with POTS and in too much pain. People twice my age were in better shape than me.

I can't be around many people, and definitely not for long. I have terrible problems with light, sound, and scent sensitivity. I can't take the sensory overload.

I do better on the net. I can actually multitask on the net. I cannot do that in real life. I can only do one thing in real life.

 

[hurtingallthetimet]

hello

its hard for anyone to be ill i do have older children..not babies or anytign..they help alot and hubby helps alot....i only go out of house if have to to get grocerys for family...medications to doctors appointments...since starting a strong pain medication i take then try to walk a few times with one of my kids its not much but its some exercise that doctor keeps swearing will help but doesnt...

im in bed on worse days..everyday in pjs and on couch getting up do a lttle in between if need to...its horrible when i have to go out because i cant take medications and drive and driving and crowds is one of my biggest fears...the whole time im trying to smile and not look crazy but inside im dying...whcih of course makes pain worse...

so i guess my limited energy is spent taking care of family as much as i can....and doing what needs done..i feel bad for asking them to pick up my slack but hubby very nice about doing things more and more...its getitng harder and harder as time goes on for me to do anythign...

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

 

[Ocean]

Cooking usually triggers POTS, my blood pressure drops and I end up having to go lay down.

My life is severely limited by this disease. I'm not even well enough for the senior activities they do in this building. I tried twice. Each time I was too sick with POTS and in too much pain. People twice my age were in better shape than me.

Carrigon, it always hurts me to see how much worse I am than people who are 80 or even 90 years old. Many are out and about being active. It's hard to be less than half the age and this debilitated.

What are the symptoms you get when blood pressure drops from POTS? I can't stand long but I never figured out if it's from POTS or PEM. Maybe both.

What type of housing do you live in? I've wondered about it but never got the chance to ask.

Thank you!

 

[Ocean]

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

So nice of you Hurtingallthe time. Even though you don't feel well you still take time out for her.

 

[Valentijn]

What are the symptoms you get when blood pressure drops from POTS? I can't stand long but I never figured out if it's from POTS or PEM. Maybe both.

There are two types of orthostatic intolerance that people with ME/CFS seem to get a lot: POTS and Neurally Mediated Hypotension (NMH).

With POTS there's a big rise in heart rate after standing up. Blood pressure doesn't necessarily get low.

With NMH, the pulse pressure (the difference between systolic and diastolic values) gets very low, generally 25 or lower. This usually takes longer to hit than POTS does, so instead of feeling light-headed when standing up, you might feel light-headed after standing (or even sitting) up for a while.

 

[Ocean]

There are two types of orthostatic intolerance that people with ME/CFS seem to get a lot: POTS and Neurally Mediated Hypotension (NMH).

With POTS there's a big rise in heart rate after standing up. Blood pressure doesn't necessarily get low.

With NMH, the pulse pressure (the difference between systolic and diastolic values) gets very low, generally 25 or lower. This usually takes longer to hit than POTS does, so instead of feeling light-headed when standing up, you might feel light-headed after standing (or even sitting) up for a while.

Thanks Valentjn. I get out of breath with stairs or hills, even just a few steps of them. Can this be related to POTS or NMH? Can not being able to tolerating standing for very long just be a PEM issue, or might it be related to POTS/NMH? Anyone know?

 

[ahimsa]

I get out of breath with stairs or hills, even just a few steps of them. Can this be related to POTS or NMH?

I believe that getting short of breath is a symptom related to Orthostatic Intolerance. I have a diagnosis of NMH (fainted during phase one of the tilt table test, no isoproteronol). Feeling short of breath was one of my early symptoms (along with so many others like dizziness, nausea, etc.).

For me, it always comes on when going uphill, even slight inclines that others don't notice, and even on a good day. During a "crash" this symptom is much worse and I can get out of breath just walking from room to room. There's no anxiety (as I understand happens to people during an asthma attack when they feel that they can't breathe). It's more of a need to sit down or lie down and rest. I can fill my lungs just fine but it feels like the oxygen isn't getting to where it is needed, my heart is going too fast, and so on.

One list of symptoms that I found for OI (aka, Chronic Orthostatic Intolerance) includes difficulty breathing. I think feeling "out of breath" or "short of breath" could be included under the heading of difficulty breathing.

In chronic orthostatic intolerance, patients are ill on a day-to-day basis. Chronic orthostatic intolerance may be confused with syncope because chronic illness is sometimes punctuated by acute syncopal episodes. However, this is unusual during real life (albeit common during artificial testing environments), and the author's work suggests no increase in the incidence of syncope above that in the general population. The physician should rely on the patient's history to determine whether chronic illness is present.

Thus, chronic orthostatic intolerance is defined by a history of symptoms of orthostatic intolerance present on a day-to-day basis. Defining symptoms of chronic orthostatic intolerance include dizziness in all patients, with high incidence of the following conditions:

* Altered vision (blurred, "white outs", "black outs")
* Fatigue
* Exercise intolerance (frequently post-exercise malaise)
* Nausea
* Neurocognitive deficits
* Sleep problems
* Heat
[I think this means intolerance to heat]
* Palpitations

A large proportion of patients also experience the following symptoms:

* Headache
* Tremulousness
* Difficulty breathing or swallowing
* Sweating
* Pallor
* Other vasomotor symptoms

These symptoms are divisible into symptoms of sympathetic activation and symptoms of reduced cerebral blood flow.

If anyone wants to read the full article it's here - http://emedicine.medscape.com/article/902155-overview

Can not being able to tolerating standing for very long just be a PEM issue, or might it be related to POTS/NMH? Anyone know?

I have several friends with a diagnosis of ME/CFS (some also have co-morbid Fibromyalgia) who get PEM. None of them have the same problems with standing that I do. One of these friends is fine with standing and browsing at shops, for example. I can't do this at all! I need to either walk or sit down.

So, I can't say that I *know* that this symptom is always related to Orthostatic Intolerance but I do think it is a lot of the time. I hope this helps!

 

[Sparrow]

I believe "out of breath" is also a symptom of mitral valve prolapse, which some doctors seem to think shows up often in the CFS population (I think it's not so much a defect in the valve for us, as a lack of the proper blood volume/pressure to keep it closed).

 

[Ocean]

I believe "out of breath" is also a symptom of mitral valve prolapse, which some doctors seem to think shows up often in the CFS population (I think it's not so much a defect in the valve for us, as a lack of the proper blood volume/pressure to keep it closed).

Sparrow, that's interesting. I do have that and have had it since childhood but doctors always said it was nothing to worry about and there would be no symptoms.

Ahimsa, Thank you so much for that info. Have you found anything to help your symptoms?

 

[ahimsa]

Ahimsa, Thank you so much for that info. Have you found anything to help your symptoms?

I do have some treatments which I list in the last paragraph. But the main thing that helps my symptoms is pacing and resting, especially scheduled "rest days." And I do almost every task sitting down. If I can do something with my feet up (legs crossed, or in a recliner), then even better! Tasks that require standing (e.g., loading the dishwashwer) are done while moving around. Standing still is avoided at all costs - even if I'm not feeling any symptoms I still sit down ASAP. Resting is either lying flat or leaning back with my feet up in the recliner (so my head, neck, arms, etc., are all supported).

Resting, pacing, and avoiding all activities that aggravate NMH (Neurally Mediated Hypotension) are NOT a type of treatment. They are just a way of coping so that my symptoms don't get even worse. I can no longer work, not even part time, but I can leave the house a couple times a week if it's a good week.

The treatments that have helped me the most were those that targeted my NMH symptoms. I take 3 prescriptions -- midodrine (ProAmatine), fludrocortisone (Florinef), and potassium (Klor-Con). To help these drugs work (particularly the fludrocortisone) I also take salt tablets (BioSalt, over the counter) and drink about 3 liters of water daily. I also take some magnesium supplements but I'm not sure whether these are specifically targeted for reducing NMH symptoms or overall muscle issues (twitching, aching). It may also have been suggested as a way to help the potassium supplement be absorbed better.


I hope this helps!