The "I am sick" mentality

[Evie]

I was just wondering if anyone else is struggleing with knowing thier limitations or even exceeding what they previously thought was thier limitation?

I am just so scared of pushing it and getting worse .. yet i fear that it is fear that is stopping me from getting better.

Maybe i should explain a bit better.

I suppose i feel that when dealing with a chronic illness you tend to need to develop new rules in your life. New boundaries of what you can and cannot do. I think we all seem to draw up a new rule book so as to best look after ourselves and to advoid any triggers or unessicary pain. A new framework to base your life on, a new mentality. After a while you dont even consider what you can and cant do, it just becomes a instant response of no or yes. At the beginning it took a while for me to come to terms with but after a while the "I am sick" mentality was firmly entrenched into my life. At the time it was quite nessicary.

Has anyone found it hard to move out of this mentality once they start to recover?

At the moment i am trying to work out how much of it is my bodies limitations and how much of it is my own mind enforcing the limitations.

I was helping out at a conferene at uni in my holidays. They wanted a volunteer to be a runner with the microphone. Since the other volunteers in the room were middle aged they all looked at me as the obvious choice. There were alot of stairs involved in the running so i said sorry i had to leave at 3 so would not be there at the time they needed the runner. It was true i was rosterd to leave at three but i could have stayed as i had no other commitments. However i realised i had denied the job before i had even considerd that maybe i could do this ... maybe since i was feeling good that day i would be able to walk with the microphone from one person to the next. (maybe just maybe even up and down the stairs heh)

It took me about 5mins of bending over and picking things up before i realised that its not likely that i would have been able to be the runner afterall. I was correct in my initial 'ruling out' of such action. Thats how i have basically survied the last two years. My health situation has basically stagnated (occasionally getting worse around periods of stress) however i have never pushed it (i did try skiiing and lasted half a day so spent the rest of the week studying inside while my friends continued snowboarding).

However now my drs want me to slowly push these boundaries. I am supposed to wake up before 9 and to exercise (my mind freaks out at just the thought of this). I am doing all that they suggest (except i am sleeping in every 3rd day as its just too hard to get out of bed).

Yet I still wonder how much of this battle is in my mind?

I realise there is a very real physical side. Yet at the same time maybe by limiting my actions i am also limiting my recovery?

Has anyone else struggled with this type of mental barrier?

[taylortotmom]

There is a difference between doing doctor-recommended exercises and running with a microphone up and down stairs! For me, stairs are a BIG No-no and probably will be for the rest of my life. Include in that: running uphill, yardwork, tennis, vacuuming, mopping, scrubbing.... However, I can when I have a good day: walk to my heart's content (literally), do light house work, shop within limits, play with my kids, non-strenuos swimming, etc. So, the point I'm making is don't let illness rule your life but don't ever forget that you are sick regardless how well you feel. There are some things that you probably should not do- period. You know your limits. However, your doctors can better tell you what is okay and what is not. The ones I mentioned above came from my former neurologist. Of couse, I never ran uphill or did yardwork prior to getting sick so those two restrictions had no effect on my life! So, don't feel guilty about telling people no about certain activities. you know your body and you know what you can handle. It is not a cop-out, it is being judicious and responsible with your health.

Carmen

[JaneEyre9]

I just want to thank Evie for this post and for Carmen for the affirming response. I have been feeling the same way as Evie but not able to put my feelings into words. It is so hard when you "look healthy" to express to people that you cannot do something. Then there is that self-doubt that kicks in..maybe i could do it... Then you try to do it and remember your limitations.

I struggle all the time with pushing myself to do as much as i can without going over the edge. It's hard when that "edge" seems to be moving all the time.

Kristen

[Ernie]

Hi,

I am a go-getter so I have the opposite problem. I always push myself behond my limit and pay for it. I am slowly learning to manage my limit and respect them. I know as soon as I make a progress because every day I see how far I can go. I think this trait is part of my personality. The negative aspect of it is that it takes me longer to recuperate. I still have much learning to do.

Ernie

[ariella]

Thank you so much for this thread. I just told a friend today that my biggest thing going for me is also my biggest downfall: I don't think of myself as a sick person.

It's also a hard call when a chronic illness fluctuates in severity. Just happened to me today, 2 students called asking if they can spend Shabbat lunch with us. Now, we haven't been having guests for a while. It just gets too uncomfortable for everyone when the hostess has to lay down in the middle of the meal. And I know that having to speak with guests is the worst thing for me right now, having some neuromuscular breathing issues made worse by speaking. But they called when I was feeling realatively well, and my kids miss having guests, so I told them to come. I don't even know their names, let alone how to reach them. Too late to cancel, anyway. I hope they like speaking with my kids

Ariella

[yogini]

Evie,

Thanks for your post. You described so well what I have been struggling with on a day to day basis. I agree that it's SOOoooo very hard to figure out what your limitations are. We all want to make progress without hurting ourselves or sliding backward.

Some of the battle may be in our minds, but that is only natural. After struggling so much with POTS, I think it's normal to be tentative and risk-averse. And I think most of the battle is physical, because doing too much can worsen your symptoms a lot.

I am inspired by many people on this board and what they are able to accomplish: taking vacations, working, going to school and raising children. Hearing their stories encourages me to continue trying to do more. Other things that people on this site do (like riding roller coasters) I don't think would work for me! It's good to know your own limiitations and set your own pace, as you already seem to. My docs pushed me last year to exercise and to reduce my meds. I tried to do these things and got very, very sick. I tried again this year, at my own tempo, and it worked much better. It took almost a year longer than they wanted, but, hey, I got there!

I would encourage you to keep trying new things slowly. There may be some setbacks along the way. And there may be some things that you can't do at all. If you take small steps, it will hopefully minimize the bumps in the road.

-Rita

[Eillyre]

Dear Evie,

Thank you for having the courage to bring this up -- it's an issue that speaks to many of us here on the forum.

Like Ernie, I tend to overdo things. I've always had very high expectations of myself and "pushed through the pain" on many occassions prior to and after developing POTS and CFS. Unfortunately, that has not always been the wisest tack and proved particularly harmful regarding POTS syptoms. I've learned that just as I had to adjust for changes in balance each day as a dancer, I must tailor my activities to my daily medical needs/limitations.

However, even though I tend to over-exert myself, I've still had to deal with the issue of knowing how much is being safe and how much is just being afraid to do more. I don't want to get sucked into a "sick person" mentality either. There have been many times over the past year and a half that I've had to ask myself if that's why I was doing so little. Was I really just lazy and using (or subconsciously making up) symptoms as an excuse to do less? Of course, knowing myself, that's an absolutely absurd idea. I didn't gash my leg fainting on top of the trash cans as a more favourable alternative to dancing my heart out in NYC! No, I'm definately sick and have some limitations that come along with it.

I do not consider myself a sick person, though -- in other words, I have never made that part of my identity or the way that I think about myself. That has helped to avoid the "I am sick" mentality, I'm sure. I've always been very active and determined and I still see myself as such, which helps to spur me onward through each day's struggles. For me it's not a question of if I want to try something -- it's a question of how wise it would be for me to attempt it.

The cardiologist who was handling my case at its beginning could not seem to fathom why I eventually stopped dancing after a six month struggle to keep up in my classes. I had collapsed at my parents home one weekend (after many dangerous and scary situations in the city caused by POTS symptoms), barely able to get out of bed. I was very POTSy and it was a tremendous effort just to get to the cardio's office, where after hearing me describe all of this in far greater detail, told me that she wanted me walking a mile each day, swimming, and doing any other form of exercise because I "would get deconditioned" settling for such a laid back approach to handling the symptoms. So I tried it, and sank further still. I gave up, collapsing each day in exhaustion. It was VERY poor advice!

You are the best judge of what you can handle. To overcome the mental barriers, the best I can say is to wake up every day committed to living life as fully as possible. You may have an illness, but you are still a vibrant and determined person!

As for the physical barriers you are going to try to wear down a little, I'd like to share some things I would suggest from my own experience:

1) Avoid those activities that will be more stressful to your particular case (e.g climbing stairs, jogging). I have trouble doing things with my arms for extended amounts of times, so I leave washing the shower walls & mopping the bathroom floor to one of my brothers while I do the sink and toilet. Similarly, when putting away groceries, I leave the things that go under the sink or on high shelves to my mom, to decrease the amount of bending or reaching I have to do (I'm still wary of standing on a chair! ). If one long grocery shopping trip is too much for you, how about two small trips during the week?

2) Avoid environments that will exacerbate your symptoms. I only walk in the morning when it's cool and quiet, as heat and noise tire me out much faster. Likewise, I shop when the number of customers is at a minimum to avoid long lines, noise, and confusion (even the extra background conversations contribute to wearing me out ).

3) Pace yourself carefully. It's great to try to add extra activities, but make sure that your choices are wise ones. Pay close attention to how your body handles it. For example, when you try to walk, are you just tired at the end because you haven't done it for so long or have you tried to do too much? Two weeks ago, I started walking around the block again and, in my zeal, walked a mile each morning -- after the fifth day my symptoms really flared up and I spent most of the next week lying weakly on the couch with severe fatigue, brain fog, and a lot of lightheadedness. This week I felt better again, so I've started walking only 1/2 mile two consecutive mornings, resting a day, then walking another two mornings. Better to start small and work up -- even if it means just walking down your driveway and back up. Remember, the exercise is meant to improve the quality of your life -- don't fall into the "more is better" myth. You completely undo whatever small benefit the activity provides if you spend even more time recuperating from it!

4) Try keeping a list. Are you a person for whom a list of the days activities might be beneficial? I use mine more as guidelines to help keep me focused and encouraged when I see everything that I've been able to cross off. I would start with a small list -- a long list of things that you weren't able to do can be somewhat dismaying! Again, like most of the rest of my life, this list is very flexible -- if I get most of it finished, it's something to rejoice over, but if I can't manage everything that day I'm not crushed.

5) Be accomodating in your sleep. Being a natural "night owl" as many in my family are, I understand your trepidation regarding changing your sleeping pattern. It can be very daunting at first, but is not impossible. Thankfully, I was able to re-set my body clock before I developed POTS, so I haven't had to deal with that on top of everything else. I try to keep a reasonable schedule for myself: usually up around 6:00-7:00, don't spend the morning in pajamas, don't spend the day in bed (on the couch perhaps, but not in bed ), etc. However, as with my lists, I make sure I give myself some flexibility in this area. I'm not sure about you, but I have had tremendous sleeping difficulties since getting sick which are gradually resolving, but still not nearly what you'd call normal. I can survive and get through a day cheerfully on two hours of sleep, but extended periods of inadequate sleep really kills the rest of my health. For that reason, if I have a bad night and feel I need more sleep to have a more productive day, I will sleep in. Some days, I do get up early but need to take a nap later (I try to avoid this as naps generally make it harder for me to sleep later). I guess my point is, definately try to get yourself into the habit of consitantly waking up early (do you have anyone who can hold you accountable to your alarm? ), but listen to what your body needs.

6) Try finding a buddy. Can you find someone who is patient enough to try activity with you (walking, stretching, Pilates, swimming, etc.)? I know a number of people who find it easier to do things if they someone to share the experience -- I didn't know if laughing with a good friend while you walk might help you forget your fears. Personally, I have not found this to be profitable at this point in time -- everyday is different for me; a lot of people would find it difficult to accomodate the variations in schedule (I don't alway walk at the same time each day, I can't always keep the schedule I intended based on changes in my health, etc.). Having been a very self-disciplined athlete my entire life, I'm able to keep myself motivated and understand the importance of working around my daily limitations, so it's worked better for me "going solo." If I get to the point when I can do things on a more consistant level, a buddy or group Pilates class would be fun.

7) Be patient with yourself. Don't let youself or others bully you into more than you can handle. It will take time to learn your limitations -- you will probably overdo and underdo at some points. It will take time to get over your fears, or at least get them to the point where they won't be a hindrance. You will not always wake up before 9:00am. Don't dwell on those times -- it's all part of the learning process. Don't force yourself to match what other people with or without POTS can do or think you should be able to do (that's tough for me -- I've always been very competative! ) -- we're all different. Try things and learn from the experience -- it's really quite exciting! You must be patient with yourself, though, just as you have to be with anyone learning something new. But learn you will if you work at it wisely each day! That leads to my last point.

8) Celebrate your victories! As you are able to achieve things that have been difficult for you, congratulate yourself or host a little private celebration (I treated my mom to tea in the backyard one day! ). There have been days that I had to give myself a running pep talk to get me through small activities such as getting out of bed, but it helped to encourage me and affirm even seemingly small victories. Share your progress with family members if they are likely to be supportive -- my dad enjoys getting my report each day when he comes home from work.

Remember that your joy is not tied up in your physical capabilities or limitations. You choose how you respond to a situation, so why not make each day as bright and beautiful as possible for youself and the others around you! I'm more joyful lying on the couch than a lot of the healthier people I've seen!

Sorry to write such an epic post! I wish you luck in your new endeavours, as I'm working on mine here, too! Hope this was of some help and didn't cause too much brain fog to roll in!

With love and sympathetic support,

Angela

[Evie]

Thanks for so much your kind responses everyone! I was worried my post would be misinterpreted as my saying its ALL in your head. Which of course i dont think at all. Its nice to know i am not alone in this battle either Its so hard to know whats 'good' for you. My sepcialist was actually telling me it can be a bad idea to hang around with sick people as i guess you tend not to 'get on with it' as you may with healthy people. However when im out with my healthy friends and i have a turn they just whack me in a cab ... it doesnt really stop me having the bad turn *shrugs*

Angela thanks for the suggestions! i have been trying to get a buddy to do some exercise with me (a buddy who understands that i may faint or cry hehe)

I dont have worries with going to bed early its just that it tends not to make a difference about when i can get up in the morning. I know that may sound really strange and nearly everyone i talk to it about suggests going to bed early, but unfortunately it doesnt change the fact that in the morning i am at my worst and if i dont sleep through it it tends to drag out through the day. While if i sleep through it i can pretty much wake up at 11 and be dandy. However at the beginning of my illness i was sleeping all day and all night and it was a major battle to make myself stop sleeping in the day. I managed to do it, it was the hardest thing i have done in my life. Im sure i can do it again *puts mental boxing gloves on*

Im going to the physio this afternoon for the first time. I hope they may be able to help with my posture and that will help with pain. When i am tired i dont have the energy to stand up strait so that causes more muscle pain. Im sure alot of you would have expereienced this.

Im lucky that atm i think i am fairly strong. The upped fludrocortisone has helped alot. I even did a few star jumps this week! (only a few but still thats something i had on the CANT DO list)

So i am pushing it .... yet i feel better for it... i think i may be stronger than i thought i was. Of course i have pushed it before and ended up on my arse. But maybe i am better now than i was then. So im going to give it a go i got up at 9:30 this morning!!!

Its only the beginning of semester ... i usually crash in a few weeks ... i hope i can postpone that crash *sets the goal*

Rita and Kristen we can work on safely 'pushing it' together! its horrible to question if you are helping yourself or actually helping yourself not recover.

For those who think its bad that they push the limits .... im sure it has its positive sides!

maybe if we somehow jumble all our mentalities together we would have a great balance

[lthomas521]

"Has anyone found it hard to move out of this mentality once they start to recover?"

Not me. After about 2 weeks of robust good health, I started to think of myself as a healthy person again. I found myself saying things like "back when I was sick." So, when I had a few bad days as a result of a horrific heatwave, it took me totally by surprise. My long-suffering spouse says, "Now you have some bad days and lots of good days, so you are far better off than you were when you were having only bad days." The voice of reason.

One caveat: If your health or level of functioning improves because you are sticking to a bizarre regimen (salt loading, water loading, etc.), you might be "healthy" but you are not really "normal." If you slack off because you feel normal, you will get sick again quickly, and it may take you a while to regain lost ground. Also, you may make unrealistic predictions about your abilities. So the "sick" identity might actually be adaptive, at least for people who have to continue to eat enough salt to gag a horse.

[Ernie]

Hi Angela,

I really enjoyed reading your post and the advice you gave. If you don't mind I would print a copy and read it to boost myself up. I find it very positive and forward looking.

Thanks

Ernie

[Evie]

lthomas, thats very true too. Sorry to hear that you still have bad days. I know when i have had a super super day and feel completely normal (i may have one or two of these days a year) i go and i do EVERYTHING ... well i walk alot and just enjoying not having to stop and consider how i am feeling. Its great. So thats a good point, maybe when we really are feeling fine we will automatically slip out of that mentality and the fact that we are not slipping out of it just means we still need to be careful.

This morning i was thinking about how good i was feeling and how maybe it was now just a matter of breaking the mental barrier and balancing what i do .... then of course i went into a shop that was hot and i was wobbiling all over the place. grrrr. oh well such is life i suppose I recoverd quicker than i usually do so thats positive.

[Eillyre]

Ernie, I'm so happy that my little tome was helpful to you! By all means, print it and read it as often as is uplifting! I'm glad to be able to add something worthwhile!

Evie, I understand the trouble with going to bed early. It never helped me either! Glad to hear that you're taking some steps in the right direction and seeing positive results. Isn't it wonderful to be able to exercise a little again?! I wanted to jump for joy the first day I was able to go around the block, and that was after my going down the driveway victory! What a glorious feeling! And up at 9:30 -- hail the conquering hero!!! Keep up the good work! Let us know how things progress!

Angela

[DSM3KIDZ]

Sorry for the late response but I've been doing poorly lately. When I first got sick last year I would always push myself when I felt able and than I would always end up sick again. Every month I have at least 1 good week and now I'm scared to push too much. I know it's just anxiety becasue I don't know my triggers but it's also an emotional thing. Everytime I felt better I thought YEAH!!!! I'm normal again, well every month I got a big slap in the face and am sick every month for a week or two-sometimes 3 I never do know.

My point is if you feel physically strong enough but emotionally unsure, I'd test the waters and see what pushing yourself does. Maybe you'll push yourself right into remission. Good luck!!!

Dayna

[Evie]

Ernie, I'm so happy that my little tome was helpful to you!? By all means, print it and read it as often as is uplifting!? I'm glad to be able to add something worthwhile!?

Evie, I understand the trouble with going to bed early.? It never helped me either!? Glad to hear that you're taking some steps in the right direction and seeing positive results.? Isn't it wonderful to be able to exercise a little again?!?  I wanted to jump for joy the first day I was able to go around the block, and that was after my going down the driveway victory!?  ?  What a glorious feeling!? And up at 9:30 -- hail the conquering hero!!!? Keep up the good work!? Let us know how things progress!

Angela

<{POST_SNAPBACK}>

heh yeh i remember the first time i was able to walk with my friends at the time. I was so so so excited inside yet they didnt really realise how much of a peak that was for me as they had not seen me when i was unable to walk. I did a little dance on the inside though hehe. thanks for the congratulations i was super proud of myself hehe.... today i got up at 12 though as i think i pushed myself too much. grrrrr. So here i was questioning my limits but it seemed i have found that boundary again heh.

I went to the physio yesterday and she said im hypermobile and undertoned ... so my body is like one big tub of jelly and needs to find its centre again. When i was making myself walk again i had to really think about each movement and i think i 'taught' myself to use the wrong muscles to walk again. For a few years i had to really think about every movement. Now i am going to try and go back and reteach my body to use the right muscles so it can do the movements much more easily and hopefully that will limit pain and exaustation. Aparantly i use my back to hold me up when i should be using my hips. I focus on muscles too much instead of using the bones.

She also made me promise that i would not push myself. hehe. Here i was thinking i dont do enough to make myself better and she was telling me that i push myself way too much and need to take it easier and slower.

So thats a interesting new way to look at my situation. Has anyone else had similar things like physio or equivilents?

I find when im well i do as much as i can (within reason ... there are things that are on my CANT DO LIST that i was questioning in my original post) .... yet now i am being told to still take it easy when im feeling ok. Thats so frustrating, you know how when you can finally do something you really want to do it? not rest. Has anyone found that taking it easy when feeling well prolongs thier feeling well? I have tried it before and found that i still crash in a few days.

Hope your health picks up soon Dayna!

[DSM3KIDZ]

I have tried to take it easy during my good days and the bad still come whether I push myself or not. I wish there was a way to exscape the bad. I'm just so darn happy during the good and so down and depressed during the bad. I need to find a middle ground. Do you ever experience this?

Dayna

[baby_boy]

Im glad this has been brought up becuase my mind often stops me doing alot of things.

On a good day when my mind feels clear i can go the gym and do 45 Mins of cardio, i feel tiered after but i can manage it, i suffer BAD! anxiety so i have to battle that off whilst im training.

When i approach stairs i automaticlly start thinking back to the last time i did it and what i felt, and i dont do it. Then as time progresses i start HATING stairs. This goes on with alot of things in life and effects me daily, even hourly. Everything i do is based around limits and if my mind says no it means no.

On a good day when i feel clean in the lord and feel good in myself i can get though anything.

[Evie]

I have tried to take it easy during my good days and the bad still come whether I push myself or not. I wish there was a way to exscape the bad. I'm just so darn happy during the good and so down and depressed during the bad. I need to find a middle ground. Do you ever experience this?

Dayna

<{POST_SNAPBACK}>

yeh

When the bad periods got shorter it was not so bad. But at the beginning when i knew a bad period would set me back months (well after i got back enough energy for emotions) i would be really upset. Now they dont tend to be so long so i dont get so upset.

Has anyone else found that when they are really bad even emotions take energy? to much energy to really feel them?

I remember that was the strangest thing for me .... not having emotions. They slowly came back one by one as the pain and total exsaustion (sp?) went away

[baby_boy]

Has anyone else found that when they are really bad even emotions take energy? to much energy to really feel them?

Glad you said that becuase yes, i often feel down, it drains so much energy i cant be bothered to do anything, aches and pains can hardley be felt as i could care about them when i feel down.

[MightyMouse]

I have no time to devote to thinking negative thoughts--there are times when I'm sick, and my body tells me to stop. Thinking that "i'm sick" all the time would probably stop me from even trying to do things like work and go to school. Yes, there are times when my body stops me from completing things I really would like to do, or even need to do, but my thinking is NOT the thing that will stop me. I have little energy to spread about, so I choose to think more positively.

I think one thing that separates me from many of you is that I've never experienced "normalness"--this is NORMAL for my body, so "sick", for me is relative. Already being impaired bodily, this state is my normal, it's only "much sicker" than my sick-normal that stops me.

Nina

[Evie]

Has anyone else found that when they are really bad even emotions take energy? to much energy to really feel them?

Glad you said that becuase yes, i often feel down, it drains so much energy i cant be bothered to do anything, aches and pains can hardley be felt as i could care about them when i feel down.

<{POST_SNAPBACK}>

I suppose thats where depression comes in. Aparantly its a common symptom of depression to have no feelings.

Although after a while i just found my emotions came back but i didnt have the energy to express them. Id feel mad but didnt have the energy to scream. So i dont think its all depression. Thankfully it passed as i got healthier, i hope it does for you too baby boy