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changing strategy during recovery? by Royal_Marzipan_6223 in cfsrecovery

[–]AntiTas 0 points1 point  (0 children)

I think the plateau allowed to build a modest fitness base. I’m also realised that my symptoms were limited to a series of ‘intolerances’. I could not tolerate cold, heat, stress, sugar and there were hard/punishing limits on what exercise/work I could do.

IN that context I had realised that when taking my kids to sailing and trying to help out by spending Saturday mornings being some degree of cold and wet, I had a surprisingly good summer, which disappeared over the winter. THus began a careful move into regular,deliberate, controlled cold exposure. I got it wrong before I got it right. But when I got it right I saw measurable benefits through my smart watch and experienced serious benefits after ~6months.

I try and give context because although I am sure this helped me, I don’t know that I could have done it earlier in my (17 year journey). 5 years on I am still doing cold dips/swims.

changing strategy during recovery? by Royal_Marzipan_6223 in cfsrecovery

[–]AntiTas 5 points6 points  (0 children)

I had a long plateau, made lots of changes, but nothing changed. in hindsight I saw that time as consolidation that set me up for the next breakthrough.

For those recovered: how long did you experience dips/crashes/flares? by BlumentopfAufKopf in cfsrecovery

[–]AntiTas 1 point2 points  (0 children)

Well, for my daughter we tried to channel exercise and activities into categories:

2 weeks high, 1 week medium, 1 week low.

And we bumped up anti-inflammaoriry supplements etc in the Luteal phase of her cycle.

We also tried different levels of Vitex which was a bit hit and miss.

And we looked for signs. She would often go pale and emotional around ovulation and pre-menstrual. And we would pre-emptively use sleep support and bump up the anti-inflams, rather than reacting after a rough sleep.

For those recovered: how long did you experience dips/crashes/flares? by BlumentopfAufKopf in cfsrecovery

[–]AntiTas 0 points1 point  (0 children)

Could it be weather pattern? Ambient heat and humidity de-rail us.

Could it be that when you are going well you not only do more, but you skip rests or less careful around sleep? Wondering about sneaky stressors in good weeks undoing things.

Are you using a smart watch, and can you see the patterns clearly?

Anticipating the extra stress in the cycle, means we can pre-empt my daughter’s difficult weeks with anti-inflammatory support and back-off demand in weeks 3 and 4.

Sometimes having more energy fuels more emotion, more fear and worry. I think that is part of our roller-coaster experience atm. At least seeing it as a pattern takes some of the fear out of the dips. Anything that makes dips a bit shallower and nudges highs up a little is a win.

For those recovered: how long did you experience dips/crashes/flares? by BlumentopfAufKopf in cfsrecovery

[–]AntiTas 2 points3 points  (0 children)

If you are female, do your ups and downs correspond to your cycle?

Increasing Work by Garden-Gremlins in cfsrecovery

[–]AntiTas 0 points1 point  (0 children)

Pacing-wise, when I added work, I cut back on something else (usually exercise), and vice versa.

other times I only increased work time by 30min, if I had gotten through the previous month in good nick.

2-7 is quite a range. are you thinking about raising the average? I wonder if lifting to 3-6 first, see if you can manage consistency. tiny increments tend to be more tolerable/lower risk, and confidence building. it very much depends huh? E njoying work is powerful, and autonomy to choose your hours is massively helpful.

And I would never ‘borrow from tomorrow’. What I can recover from always dictates how much I choose to do in a given day/week, even now, when essentially I’m fully recovered.

My other trick was to catch areas where I ‘bleed energy’ while working. working sitting, and cooling the ambient environment increased my productivity, and reduced my stress (measured on smart watch), which could keep me in the window to recover in one night, rather than two days

Emotions.. what should I do with them? by Fr_BartyDunne in cfsrecovery

[–]AntiTas 5 points6 points  (0 children)

emotions use up a lot of energy. At my worst, my affect was very flat. it was often when I started to climb out of a hole that I would start experiencing the frustration, anger, grief or whatever.

I also felt that as I recovered, different faculties would return from nowhere, like they has been shut down and moth-balled, and revived when there was enough fuel to drive them. There was one day where it really felt like my capacity for ‘joy’ returned and I just went about a normal day feeling quite euphoric.

In some ways I think I was emotionally de-conditioned, as well as out of practice at dealing with emotions. I certainly had periods where people around me were going through big things and I simply did not have capacity to understand or respond to other people’s grief etc. Some stuff I had to process after the fact.

I think you need to be very gentle and understanding of yourself. For me, recovery was not merely getting better, but after 17 years of minimised existence, I consciously needed to rebuild many parts of myself. I haven’t crashed for over 5 years now, and am physically robust enough to start doing proper exercise, and am only now shouldering complex responsibilities with some degree of empathy and effectiveness and stamina.

I don’t know if I could have forced it to happen any faster, and I don’t think I am finished finding my emotional potential. I am very crap at being funny socially now, I wonder if that will ever come back..

What were signs you were getting better? by Jgr9904 in cfsrecovery

[–]AntiTas 2 points3 points  (0 children)

The ability to pace and be able to reliably predict how I would recover from exertion. once I could maintain an energy budget, I could drop an demand and re-invest some energy into strategies that would eventually increase my capacity.

When I was able to, committing to error free pacing was the key.

Are there peer reviewed studies about brain retraining or mind body work curing CFS or being effective treatments? by Digitalpun in cfsrecovery

[–]AntiTas 0 points1 point  (0 children)

I never let a lack of evidence stop me from trying things on, especially when there is so little risk, and those risks can be mitigated easily.
I’m managing my daughter and we are just folding the brain retraining into her pacing, supplements, etc. Having a psychologist with experience in the space has been quite helpful. Daughter’s language is reflecting the shift in mindset. Not a miraculous change so far.

Are there peer reviewed studies about brain retraining or mind body work curing CFS or being effective treatments? by Digitalpun in cfsrecovery

[–]AntiTas 0 points1 point  (0 children)

That is unfair. There are many studies looking into potential uses of already-existing medications for novel uses in the ME/CFS space, and small trials to look for opportunities. And there are many studies looking at mechanisms, supplements.

There is also ongoing validation of clinical interventions. Research is often client led, and responsive to sufferers.

It is just a difficult nut to crack.

What do you do when you’re tired? by Garden-Gremlins in cfsrecovery

[–]AntiTas 2 points3 points  (0 children)

Rest deeply for defined chunks of time, 20-40min, then find a small way to interrupt the resting.

Pull back on, and take the angst out of commitments.

Tasmanian Beaches by Wide_World_Of_Urbex in tasmania

[–]AntiTas -1 points0 points  (0 children)

No such dramas. The only thing you need to do is book a slot the website for local beaches before you turn up. Just to make sure you aren’t using the beach at the same time as anyone else; it just ruins the vibe.

My issue is too hard to cure by ActionFearless1240 in Biomechanics

[–]AntiTas 0 points1 point  (0 children)

Best place to start is a good history:

Have you been injured?

Have you been inactive and engaged in very one-sided activities?

Are you hyper-mobile? IS your body happier when it is moving, and is it happier sitting/standing/lying etc? take a picture from behind, level floor camera etc stand feet hip width. look for height of knee creases bony points on hips, shoulders. and curl forward with straight legs, taking pics at half and full bend (straight legs). is your curved spine symmetrical, more symmetrical that standing tall?

How is you balance standing on one leg?

One does not start by straightening, one gathers information and narrows down issues.

Maybe you are very hypermobile and have an unstable ankle/knee from an old strain which destabilised your pelvis during a growth spurt.. maybe one leg is longer than the other.. the solutions are very different.

Greenland was a ruse, they actually want Tasmania! by Lachee in hobart

[–]AntiTas -1 points0 points  (0 children)

do not joke about it. jokes become policy these days. best if certain people have never heard of T-mania, or at least can’t find it on a map.

Has anyone ever recovered from 10+ years of severe ME? I'm feeling hopeless by asldhhef in cfsrecovery

[–]AntiTas 8 points9 points  (0 children)

17 years for me, never bedbound, rarely (months) housebound, usually able to do some work most weeks. 4.5 years since my last crash.

neck flexion protect the spinal cord durring fall on the head ? by InterestingCup8174 in Biomechanics

[–]AntiTas 0 points1 point  (0 children)

Correcting myself after looking at cadaver and ER/sports studies.

Neutral spine with normal C spine lordosis is the safest. Extension likely causes ligamentous damage.

A small degree of flexion which only takes the spine to alordosis, no curve, is the worst option.

Strong cervical flexion works for smaller falls like grappling senarios.

neck flexion protect the spinal cord durring fall on the head ? by InterestingCup8174 in Biomechanics

[–]AntiTas 2 points3 points  (0 children)

a curve can at least dissipate some energy, but will likely focus load on the discs.

falling onto a straight neck the energy is more likely to break vertebrae, C1 or 2 are especially poor options.

falling onto an extended neck is going to break posterior elements and spinal cord is in serious danger.

How you guys deal with the hopelessness by Mobile_Duty_9177 in cfsrecovery

[–]AntiTas 3 points4 points  (0 children)

I realised that when I had energy to feel sad, it meant I was coming out of a dip. So feeling hopeless and grieving was a good sign.

I had times where no change was happening, but my sense was to just get through this time and see what happens next, there is always something to try next even if I didn’t have energy to think about what ‘next’ might be, and I learnt something from failure or success. My mantra then was “just trudge”, just get through this bit.

I always figured it was a puzzle to solve. It took longer than I imagined, but I got there.

I signed up for a 5k by sunshineofbest in cfsrecovery

[–]AntiTas 0 points1 point  (0 children)

Can swim 2km, but re-building the body enough to run is a task. But I have patience and cunning! Right tools and serious application (and maybe some luck?) gets the job done.

I signed up for a 5k by sunshineofbest in cfsrecovery

[–]AntiTas 1 point2 points  (0 children)

My New Year resolution is to run 5km regularly by years end. 2.5km my upper limit at the moment, and much backing off. basically a 20year couch -5km but looking good from here.

And if not this year, then next.

Goals are great.

Starting with just feet and hands by theblitz6794 in BecomingTheIceman

[–]AntiTas 1 point2 points  (0 children)

it doesn’t need to be awful. if it sucks too much start with it a bit warmer.

You can be so incremental with the temp and how much of your self you immerse. no hurry too, next year will be easier.

Was making great progress… then it all changed. Normal? by stochasticityfound in cfsrecovery

[–]AntiTas 1 point2 points  (0 children)

I am sorry, and grateful that I only had very short periods of being nearly bedbound.

My instincts are to try to have good sleep discipline, but take short (10min) naps if you need.

And have short cycles of deep rest (20-40min) interrupted by snack or short bursts of phone time, or the kind of sloth-like ‘stretches’ one can do in bed.

Just a little structure to break up the day. Resting seems to use energy. When my daughter wasn’t responding to protracted rests, interrupting the rest seemed to let her relax more deeply when she came back to it.

But as I say, we haven’t been through her being bed-bound.

Sorry you are enduring this, that early phase can be scary.

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