How do i get off the seesaw?

[justy]

I would love to hear from others about how to get off the seesaw of the up and down crash pull cycle.

Im really bloody fed up today and yet i know that i am lucky because i have started for the first time in a few years to have ups, in general i have been improving but now i ma on a massive down swing again and i cant believ i keep getting back here and it all feels too much and like its never going to end.

before i was ill all the time either in bed or the sfa, now after lots of hard work i am improving and can go out a bit more and have short walks etc, over easter i even felt like a nearly normal person for a few days, but now itrs all gone to pot again. I feel sick, my stomach hurts, i cant see properly, the pain is back, the dreams ate back. the panic attacks are back, i cant do very much without being utterly exhausted, the lights are too much, you know the way it is.
Maybe im just crap at pacing, but when i feel ok io want to have some sort of life even if its a limited one.
I am begining to see a pattern of two weeks good two weeks bad (sorry for typos -i cant work out how to spell today) the other day i stood for 10 minutes looking at a tree in myt garden -couldnt remember its name - its a normal tree that we have all over britain, we live on the edge of a wood that is full of them, they are my favourite tree. Where the word BEECH should have been in my brain was a gaping hole. i dont want to go back to this again, but i also dont want to whinge and be full of self pity i find it pathetic and when i feel a bit better i wont even remmebr it.

I know im ranting, so sorry, just need some answers and i would so much love it if they werent the kind of answers that require superhuman amounts of effort or money to enact. Im fed up with having to try so hard all the time, does anyone else ever feel like this?

 

[taniaaust1]

Maybe im just crap at pacing, but when i feel ok io want to have some sort of life even if its a limited one.
I am begining to see a pattern of two weeks good two weeks bad :

Nods yeah it can be very hard to pace and not get excited and over do things when one is feeling better.

Maybe sticking to some kind of restricted plan on your better days or weeks would help. In the long run if you can not be causing the bad weeks (by doing too much)... your health over all may start to improve more and you may find out you can do more after a while without worsening things.

I have time limits each day of activity I have set for myself and make sure I dont go over ... that way I dont tend to get any seesawing. Seesawing just makes this illness far more unpredictable and makes one unable to be planning anything so best avoided. Seesawing may also prevent someone from being able to really improve.

Test yourself with just a wee bit of activity and work out exactly how much you can do for at least 3 weeks ongoing without causing any downhill fall. By wee bit .. it may be quite small and yes you will probably want to do more at better times... but remind yourself you are doing this to build your health up and not be seesawing so tell yourself no. If you arent causing crashing for that two weeks.. you will be achieving more each month anyway.

(maybe try to meet your activity levels half way.. in between what you do when you are in a bad week and a good week but you may need to cut back further if that still causes bad weeks .. try to find the stable activity level for yourself).

You may need to keep yourself a diary to help work out how much you can consistantly regularly do eg say for 3-4 weeks without going downhill.

 

[Boule de feu]

Is seesawing in Australia the same as roller-coasting in Canada? Probably the same idea?

What is difficult is the psychological impact that it has on us. One day you feel not too bad and you are able to cope. The next, you are so ill that you can't function anymore. I have learned to live with the awful symptoms, but the idea of going back there is too much for me to handle. I think that's why some will end up depressive. They can't take it anymore.

The only way I go about it is to repeat over and over: "I know I'm not feeling good today but I will have days that it wil be better." and then I rest and wait to get better. So far, it has worked. Last month, it took 30 + days, but I did get better. I just relapsed last Saturday (I'm back to rice cakes and water only). But, I'm stubborn. I must hang on to something. If there is no hope, there is nothing. So, I choose to not give up.

So, hang in there, kiddo! =-)
Rest as much as you can. Be gentle to yourself.
Don't forget that there are others here just like you who can understand what you are going through.
Don't hesitate to let us know how you feel and how bad it gets. You are not alone.
I'm sure you will have good days pretty soon.

 

[justy]

Thank you Taniaaust1 and Boule de feu for your kind words. Its just so hard to really pace properly when you have a family and children who want you to be normal, i know i must pace better, the sad thibng is i thought i was, but after all theis time i still havent learnt...yet, i so much want to be normal again that when i feel halfway decent i run away from the whole M.E thing, put my fingers in my ears and go LA LA LA LA LA. Then everything slides and i have to spend months getting it back.
Thanks again.

 

[Boule de feu]

Thank you Taniaaust1 and Boule de feu for your kind words. Its just so hard to really pace properly when you have a family and children who want you to be normal, i know i must pace better, the sad thibng is i thought i was, but after all theis time i still havent learnt...yet, i so much want to be normal again that when i feel halfway decent i run away from the whole M.E thing, put my fingers in my ears and go LA LA LA LA LA. Then everything slides and i have to spend months getting it back.
Thanks again.

I have been sick for many years but very ill (housebound and bed bound) for the last five.
One thing I know for sure is that ME is complicated. We can not predict anything.
Pacing works sometimes, not ALL the time. It does not matter how careful you are.
One episode could be triggered by not resting enough, perfumes could trigger another one.
Noise from the TV. Light. Food you eat. Weather.
It's impossible to control everything.
There are too many things going on.

I wish I could say that I have found the solution.
Unfortunately, it is not the case.

Maybe next time you could try another tune. A slower one, maybe? LOL =-)
Never know, it might work.
JUST KIDDING! =-)

 

[Boule de feu]

One thing I know for sure is that trying to ignore the illness and pretending I'm normal is not working.

I MUST CONFESS -
I have thought that maybe this disease was ALL IN MY HEAD and that I could just 'get out' of it. But no, it does not matter how much I have tried, I have relapsed each time. Many times, I got worse.

At some point, we get so fed up of being sick that we have no choice but to learn to live a monk's life.
(I'm talking here priests not Monk, the detective. LOL)

 

[Shellbell]

Hey Justy, it is quite a ride to say the least. I completely sympathize with you as I am going through the same thing right now.

I crashed ~2 weeks ago, going from feeling 70% recovered back to 20 - 30%. I have been doing Fred's protocol and was seeing progress. I didn't know what hit me.

After doing some research, I now look back and realize that having my teeth cleaned the day before was probably the reason for my crash. Like you, my digestive tract is literally a mess. I have never had so much pain and dysfunction. Along with that, my other symptoms have spiked, again!! Who would have known that cleaning teeth could make one so sick. But it does make sense as it is releasing bacteria into the blood stream and digestive tract.

We need to just hang in there. I hope you feel better soon!

 

[August59]

Thank you Taniaaust1 and Boule de feu for your kind words. Its just so hard to really pace properly when you have a family and children who want you to be normal, i know i must pace better, the sad thibng is i thought i was, but after all theis time i still havent learnt...yet, i so much want to be normal again that when i feel halfway decent i run away from the whole M.E thing, put my fingers in my ears and go LA LA LA LA LA. Then everything slides and i have to spend months getting it back.
Thanks again.

I can so much relate to this!! I swear (but shouldn't) that I work harder now being at home than I did when I was working full time. Having two young teenage kids that can't keep the concept in their head that I'm sick and I'm not going to get any better if I have to keep doing all the cleaning, laundry and cooking plus get groceries

 

[Graham]

I can't add much to this, and I confess that I am one of the lucky ones that never really has hit the bedbound stage, but I do find that if I go out on a good day and walk, my mind is often working overtime as well, running over things I need to do (because I'm on a good day) etc., and that must be a double whammy! So if I take a camera, it makes me look around for nice pictures, appreciate the surroundings, and, most important of all, switch off. If I sit in the garden, I try to concentrate on spotting birds or something similar. Anything to keep my mind away from what I "ought" to be doing. And at the moment, I'm going through a poor patch because I overdid things earlier in the week, so don't trust a word I say.

And for those of you who are bedbound, I have nothing but profound respect and sympathy. How you can stop yourself from thinking all the time about the frustrations is beyond me.

 

[WillowJ]

I agree that this is hard.

I did try the "pretend I'm not sick" thing, several times; the last time I gave up pretending but went on pressing on, and I ended up so crashed and burned that a new doctor took one look at me and thought I had AIDS. and I have never recovered to my previous level (though I did put on some weight). That is partly the fault of a new infection, though.

what I have found is one important thing to do is to accept the fact that I'm disabled. Not expect myself to be or get healthy. It's not a fun thought to accept, but it's better than being continually frustrated by my inability to act as healthy as I would like to see myself.


Boule de feu, thanks for making me laugh.

 

[caledonia]

Pacing is an art, not a science, so even if you think you have it down, you're going to screw up occasionally. But it should be possible to do better.

First off, you can't ignore the disease and act like you're normal. The second you start feeling tired, you have to stop immediately and rest. Listen to your body and don't push.

Another suggestion I've heard, which I think is a pretty good one, is to only do half of what you think you're capable of doing.

You can also plan for PEM if, say, you're going to do a social event. Rest up the day before the event, and plan for resting up for a few days after the event.

I had a mom with CFS and she had us kids trained to be as self sufficient as possible. My dad also helped out a lot around the house. We didn't feel deprived.

 

[justy]

Thanks everyone, so many good suggestions and i needed the laughs too! I realise that im not really pacing well at all. i thought i was but it appears not. This is what Dr Myhill wrote in her report to my doctor over a year ago

. Many CFS sufferers push themselves to do things at the expense of damaging their tissues. So they can choose between feeling better and doing very little, or having a life and feeling terrible. Most do the latter.

I see now that because i have had some minor improvements, especially with anxiety and brain fog then i am choosing to have some semblance of a life but to feel terrible all the time!
I also thought it was a positive sign that i was having a couple of bad weeks followed by a couple of good ones because at least i had progressed to having some good days whereas before i never felt ok. Of course in the back of the mind, however much i know its not true, is the thought that maybe i am just deconditioned, maybe i am just having some kind of false illness belief. I know this is crazy when i have my mito and high cell free dna test results from Dr Myhill, i have the proof, but somehow the idea that we are just a bit nuts is so pervasive it even gets to me.

I know when i tried the approach of "completely rest and do nothing until you feel better and then and only then increase activity" (this si Dr Myhills advice) i actually got worse. I seem to be one of those people who needs to push ever so slightly in order to function, when i tried the resting thing i ended up in so much pain and in such a state, hardly able to shower or get dressed so it feels like i have to keep up a certain amount of "doing"

Its so complex isnt it? I finally have an appointment to see Dr Myhill in person at the end of th month and my husband (who is very understanding) will be coming in with me, i want him to hear it from her own lips how sick i am so that there is no need for me to feel guilty all the time -oh its so mesed up!
Im hoping to get a boost by gpoing to see her and set my mind a bit straight. i cant afford to keep seeing her though or to have much more testing done.
Thanks for listening, not feeling quite so low today but the achey pain is really getting me down and still feeling pretty tearfull for no reason.

 

[heapsreal]

The energy envelope helps but also premptive rest and lots of rest when doing things outside your envelope, we cant always stay in the bloody sticken envelope though. Also treating symptoms like sleep and pain go along way, help reduce these stresses on the body and that extra energy is used in recovery. Also look for things that improve sleep quality not just basic sleep tablets but things like baclofen improve sleep quality as well as lyrica which also help with pain as well.

Try to group your treatment into groups like symptoms stuff- sleep pain etc, then infection with av's, immune stimulants prescription and herbals, then herbal stuff for adrenal fatigue and lastly anti-oxidants which i think help with progression of cfs as well as immune system etc. I also have a crash formula of b12 injection and munch on vit c like smarties, does it work- i dont know but its cant work, they work as anti-ox so must have some sort of impact.

But i think a few days of chillin out doing nothing but watching some funny videos, trying to get your endorphins up, cant hurt. When reall up to sh-t, just use sleep meds and get lots of sleep.

This is the outline of my plan, hope u get something from it.

cheers!!!

 

[justy]

Thanks Heapsreal for sharing your plan with me. Yep today im going to lay on the couch and watch Glee (terrible i know its my middle age guilty secret -dont tell)
I have gotten some way with antiox idants and herbs -my immune system is so much stronger and i sleep pretty well these days. I like the idea to group treatment things together, im hoping to get soem help with this from Dr Myhill a tht ened of the month.
Thanks!

 

[heapsreal]

grouping them together helps with our crappy brains to work out what we are doing. As for chillin out tv/videos, i luv that 70s show or anythings else totally meaning less but funny, lol. The grouping also helps to put our treatments into perspective and makes it easy to treat all the organ/systems that get dsyfunctiional.

cheers!!!

 

[*GG*]

Thank you Taniaaust1 and Boule de feu for your kind words. Its just so hard to really pace properly when you have a family and children who want you to be normal, i know i must pace better, the sad thibng is i thought i was, but after all theis time i still havent learnt...yet, i so much want to be normal again that when i feel halfway decent i run away from the whole M.E thing, put my fingers in my ears and go LA LA LA LA LA. Then everything slides and i have to spend months getting it back.
Thanks again.

Ah, I was going to ask if you had family, because I would figure that it would put more demands on you. I do not have my own family, so I don't find the demands so bad, although I work 30hrs/week and travel a good distance!

Have you checked out Bruce Campbells website with pacing? they have a few worksheets that could help you figure out not to overdo it, I am not familiar with the worksheets yet. Also, do you raise your heart rate a lot? Would it be helpful to get a Heart Rate Monitor (HRM)?

GG

Little Gadgets That Can Help Stretch Your ME/CFS & FM Energy Envelope

http://www.prohealth.com/library/showarticle.cfm?libid=16050

 

[Boule de feu]

Have you checked out Bruce Campbells website with pacing? they have a few worksheets that could help you figure out not to overdo it, I am not familiar with the worksheets yet.

GG

I did THE 3 internet classes (great format for ME sufferers) and i'm still participating in the alumni group. It was worth it. Bruce was there for us - we could ask all the questions we wanted. I do recommend it.

 

[taniaaust1]

Thank you Taniaaust1 and Boule de feu for your kind words. Its just so hard to really pace properly when you have a family and children who want you to be normal, i know i must pace better.

Definately not easy if you have children and if you have very young ones with only you to do the looking after them, it may be impossible to be able to pace correctly in accordance to how ill you are, if there isnt another who can step in and do the work.

I really feel for anyone in that situation. Right now Im lucky as its only me I have to look after.

Many CFS sufferers push themselves to do things at the expense of damaging their tissues. So they can choose between feeling better and doing very little, or having a life and feeling terrible. Most do the latter.

That's a great quote. Im in that catagory.. of feeling better but doing very little so have no life hahaha (I do thou understand what Dr Myhill means).

Actually I do feel like I got a life nowdays, but it is very very different to the one I used to have when well. One can still have a life and be mostly homebound doing nothing.. Whether one is having a life or not, is just how one chooses to percieve ones life

I know when i tried the approach of "completely rest and do nothing until you feel better and then and only then increase activity" (this si Dr Myhills advice) i actually got worse. I seem to be one of those people who needs to push ever so slightly in order to function, when i tried the resting thing i ended up in so much pain and in such a state, hardly able to shower or get dressed so it feels like i have to keep up a certain amount of "doing"

Its so complex isnt it? I finally have an appointment to see Dr Myhill in person at the end of th month and my husband (who is very understanding) will be coming in with me, i want him to hear it from her own lips how sick i am so that there is no need for me to feel guilty all the time

When someone is resting but getting worst from that. It makes me wonder if they also have Fibomyalgia or have it as quite dominant. With Fibro moving around helps stop stiffness and can help pain levels... so you may be caught between needing to rest due to the ME but needing to be moving with the Fibro.

Also if you are resting but laying there feeling guilty and like you are being lazy and beating yourself up over it in your thoughts. That then isnt truely having relaxing rest... and raised stress levels could be counter productive

 

[justy]

Thanks Ggingues, thats a great link, its made me realise i need to start taking the whole pacing thing a lot more seriously. Also its great to hear that others have found the Bruce Campbell site useful -i looked at it a couple of years back but wasnt sure if it was helpful or not.

Tanniaast1 - i have quite a big family, 4 children and an extended family, 2 of my kids dont live at home any more so it is quieter these days, but it does mean we have lots of visitors and they bring partners too. Its a double edged sword, sometimes i wish i could just be on my own and suit myself. when i was very ill i longed to be alone a ll the time. But also they are what keep me going and keep me sane and happy, they are lovely kids and my husband is great -the guilt is a whole other story.

 

[August59]

I would be able to hnadle muc more if I wasn't trapped in this "oven" or "on fire" feeling. It is like waves revolving through my body. It is easily seen and felt by my son and daughter. My face and chest wil get very hot inside and outside then it will move to my neck and upper back. Once it moves to the back my face and chest will be very cool to the touch. My fingers, toes. nose, ears and knees are almost always cool or cold. I have also became very sensitive to unexpected movement or noise which causes the startled heart palpitations. I'm pretty sure my adrenals are taking a severe hit right now. Hope to have labwork soon to verify. Thanks