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Does everyone have a baseline

Discussion in 'General ME/CFS Discussion' started by Sallyagerharris, Dec 13, 2016.

  1. Sallyagerharris

    Sallyagerharris

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    After 10 years of living with ME I'm determined to try and stabilise and avoid crashes as I've been deteriorating over the past few years becoming sicker unable to even leave bed with the ME becoming unrelenting I.e. No break 24/7.

    I'm redoing all the activity sheets and gearing down to try and find my baseline. What I'm wondering is whether there is a baseline or for some people may it be that literally surviving makes us sicker without having to do anything at all.

    I just want to be realistic whilst I work towards hopefully finding a baseline, preventing relapses or entering them with more awareness. It is just so difficult to find the baseline when everyday life's challenges get in the way that cannot be anticipated with preemptive resting etc.

    Thx

    Sally
     
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  2. SuzieSam

    SuzieSam Constant companion

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    I'm in a big flare up right now and everything - brushing my teeth or hair! - makes me so tired. Like an idiot, I made mushroom soup for my husband tonight, and I feel dreadful.

    Yes, I think literally surviving, keeping our bodies functioning on a basic cellular level, can make some of us more sick, so we get sicker year on year. Even if we just rest and don't get guilted into using energy by our families.

    Before this flare, I knew that if I stood to cook a meal, I'd be pinned to the bed like a butterfly for 2 days. If I went shopping for a couple of hours, the same. Out for a coffee, or lunch, end up in bed the rest of the day, possibly get a 3 day migraine.

    If one of my kids gets ill and needs support when I've exhausted myself going to a doctor appointment it's a big problem!
     
  3. trishrhymes

    trishrhymes Senior Member

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    Hi Sally, so sorry you're having such a hard time. I don't think I've found my baseline after 27 years gradually deteriorating from mild through moderate to housebound and now spending most of my time in bed, though still able to do some basic stuff like assembling food for meals (I don't actually cook) and sitting up for meals.

    I have never done activity sheets since early vain efforts to do them came to nothing as life intruded with things that just had to be done anyway (I was working part time and bringing up kids as a single parent for the first decade or so).

    The thing that has made most difference to me in the last year or so is wearing a fitbit (other brands of pedometer are available!). I can set it to vibrate when I reach a certain number of steps (or wrist movements, since I wear it on my non dominant wrist). I can also look at my activity pattern through the day on line.

    By gradually cutting this number down, I have reduced and evened out my activity level. I'm crashing completely less often, and I'm going to bed in tears because of the level of pain less often. But so far after a year of this my fatigue and energy levels are showing no signs of improvement.

    For me the next stage, I think, if I can manage it, is to try a couple of weeks of drastically reduced activity... Haven't figured out how yet, as I still have caring responsibilities...

    Edit: It also occurs to me that an objective measure of how much activity you have done so far in the day is a great way of demonstrating to others (family) and to yourself that you need to take a rest. You could get them in on the act, helping you to monitor it and even telling you to stop. If you keep a record of daily steps and symptoms you can look for patterns, and get the family to help you...

    Good luck.
     
    Last edited: Dec 13, 2016
  4. Sallyagerharris

    Sallyagerharris

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    I really appreciate the feedback.

    Normal life most definitely gets in the way and makes it difficult to "pace" and stay within restrictive parameters. Definitely some family do not help with guilt whereas others are wonderful.

    I'm use a MIo constant heart rate watch / activity / monitor which is providing information that I need despite a new glitch where the app is stuck and I cannot get new data from it. But I've been recording activity manually as well using a colour coded chart easily illustrating that I'm living way beyond my no energy levels!!!

    It's good to see it visually on the activity chart as I'm probably in partial denial thinking I rest more than I do. As I've no immediate dependents but lucky enough to have an amazing husband I'm heading in the new year for a period of aggressive resting to see if I can stop th boom or bust. As with everyone lots of elements of normal life are out of our control and unpredictable but I'll see how far I can get. I've started autogenic relaxation as on element of my aggressive resting strategy and am building elements in such as Desert Island Discs (amazing how lovely and slow and calming to listen to), mindfulness but also going to build in Internet and iPhone free days plus closely monitoring to keep my heart rate down.

    I think I'm realistic in thinking I don't have a true baseline but would love to b surprised!!
     
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  5. trishrhymes

    trishrhymes Senior Member

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    Hi again, it sounds like you're very well organised in planning your aggressive rest therapy. It will be interesting to hear how that goes - do please keep us updated.

    I've been saying for ages I'm going to try it but am finding it impossible so far to let go of internet based activity (like these forums) for whole days at a time. Switching off my brain I'm finding harder than physically slowing down.

    Coming back to your original question, I don't know whether I have a baseline - like you, I'm afraid it's at zero activity, which is impossible for me because my daughter has ME too, and if I stop altogether for more than a day, leaving her to fend for herself, she crashes badly and ends in bed for a few days or more. In emergency we help each other out, but then pay the price...

    Interesting you use Desert island discs as your relaxing program. My favourite for that purpose is A Good Read.

    Keep us updated...

    Good luck...
     
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  6. Sallyagerharris

    Sallyagerharris

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    I must listen to a good read as well!! I'm keeping hope that I may have a baseline but am also realistic as even when I've been strict with myself and done nothing I've crashed. But worth a really strong and much more organised effort that hopefully can at least help a bit.

    Not having dependents makes it massively easier for me plus understanding family and friends. Im grateful for that as can't imagine how I'd cope with children especially if also sick.

    Christmas especially is always a tough time as everyone comes to us. But loads of preparation and freezing plus a who does what list for a few days hopefully will help. Hence I'm starting properly in the new year when I can realistically have a chance of being able to assess where I can get to.

    I will update as and when. It is really interesting to get others experiences and views.

    Thx

    Sally
     
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  7. TiredSam

    TiredSam The wise nematode hibernates

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    I'm lucky enough to have a baseline, if I stay under it I can be just about symptom free, if I go over it I become symptomatic. It took a long time to work out what my baseline was, especially since it moves sometimes, up or down, just to annoy me.

    Even when I thought I understood the basics (I'm really into records, measuring and categorising activities etc) it still took me many months and giving up more things than I thought I would have to before I found it. I'd rather live a restricted life fairly symptom free, so I've made up a load of rules (based on past observation/experience) which I stick to strictly.

    Whether this has led to my recent improvement I don't know, but I'm now "dangerously well", ie feeling better and tempted to do more. So on Monday this week I taught for 6 hours, which I could have just about got away with if I had rested on Tuesday morning and only taught max. 3 hours on Tuesday afternoon (that's one of my rules). However, Tuesday was my wife's 50th birthday, involving a shopping trip, lunch in a restaurant and cinema in the evening with our kids.

    Nice idea, although the reality involved me shuffling along the high street like a zombie, being slumped and uncommunicative in the restaurant, and dozing in the car and cinema, plus of course the health bill that arrived on Wednesday. We've got the in-laws arriving on Saturday, and a party for 35 people on Sunday - wish me luck :balloons::cocktail::wine::beer::cake:!

    However with the rare exception of this week I'm pretty good at sticking around or under my baseline and after many months I seem to be starting to reap the benefits of it. If you have a wonderful husband and no dependents I'd really encourage you to see if you can find your baseline and stick to it, you sound well-placed to give it a serious go. Best of luck :thumbsup:
     
    Last edited: Dec 15, 2016
  8. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    Similarly I have my geek on when it comes to rules to stay under the baseline and can totally relate to shuffling zombie mode if I overstretch myself (Italian market with the family a year ago). I also use a Fitbit. One of my rules is to keep to under 5000 steps per day, another to never carry anything over 5 kg and if under this keep to a max of 10 min. Another never stand for longer than 10 mins. Another don't ever do any cardio exercise (I use a heart rate monitor). You hopefully will have your own rules. I like TiredSam have a family and my wife pretty much is a single parent for a lot of the time. My son came back from school really excited today since the local football club had sent their mascot into school with a load of free tickets. Won't even contemplate standing at a football match for that long with queuing etc so Granddad will have to oblige on this occasion. Sad thing is he didn't even expect that of me. I just know that this won't be a quality experience for either of us if I try and do it. I use another ap on my phone to track energy levels/infection and other symptoms. Even with the rules I have regular drops in energy, but have got my horrible symptoms (muscle and joint pain brain fog etc) relatively under control. By crashing less my recovery is a lot quicker than it used to be too. Good luck...it might be a bit of a pain to get there but hopefully you can manage it better once you have an idea as to your triggers.
     
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  9. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    That's my recent energy level
     

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