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STRIPEYSOCKS BLOG (not part of the book!)



At the moment I'm swapping one coal face for another; I am at last managing to embed some writing time into the hours spent on Tymes Trust work. Sorry for the break! You will all know the reason:

either we run ourselves into the ground, or we manage to build rest periods into our lives.

I finally adopted the maxim 'Stop it at once!' which amuses my twitter followers and regularly warns me off overdoing things. Even if I don't always listen to myself.

It is good to sit on my sofa, pick up my tablet and check what's afoot on twitter, knowing my tweets must fit into just 140 characters. Sometimes the retweets come thick and fast and I know I've reached thousands; more often it's a group of us tweeps, busily discussing some pressing topic. I like the personal nature of twitter. But I especially like how it forces you to compress a thought into a clear, concise statement. Here's a selection. I hope these observations are helpful (most hashtags/twitter handles of recipients removed.)

On personal experience

The hardest thing 2 cope with in my experience is uncertainty. But the body is constantly working to heal itself.

I've known very bad cases incl mine that have over many yrs slowly transformed into relative normality. Amazing.

At my worst I was bedridden, muscles like water; I had to take a rest halfway through chewing a mouthful of food.

That stage lasted long time (brain so badly affected I don't actually recall how long) then wheelchair for years.

Still remember the day I realised- I didn't have ANY pain ANYwhere. 1st time in a year. The daily&nightly endurance test of pain had faded.

In response to tweets on fainting

I've done that! Blacking out and crashing through my young son's bedroom door in dramatic fashion..

Or just deciding enough is enough & sitting on the ground. In train stations, anywhere public!

In reponse to Q: what's your feeling on the idea of "Finding a baseline" Jane?

'BASELINE'? Don't get me started on this nonsense. "I refer the honorable gentleman to the answer I gave some moments ago"

Yeah, file 'baseline' with 'trigger'. Jargon. Leave baselines to @andy_murray He'll make better use of it.

Seriously: my earlier comment was on fluctuations. ME has diurnal fluctuations (during the course of a day). Each person has a 'best' time.

So if you have a best time of day (brain at max arousal) you can do more then than at other times. Therefore it would be a moving baseline!

ME rarely stays on steady path. Fluctuations part of it. 1st thing yr body thinks on waking: "Now how am I 2day?"

In response to a tweet about GET

Not surprised. Graded exercise in pure form removes use of one's intellect to respond to the body's messages

On relapse

The urge to Do Stuff (often making ourselves worse in the process) is NORMAL folks. Psychs should mark&learn.

On managing life

Don't ask. Tell it. I told my virus I didn't mind giving it a home if it would just not give me 2 much trouble!

Try talking to the enemy. Negotiate a truce. Try for an accommodation so u can co-exist without too much pain.

Learning what your body can manage, adapting to new lifestyle, with built-in opportunities for energy saving, helps to turn things around.

That's the way 2 do it. Practical support is bedrock of managing ME. Try for an energy efficient lifestyle.

I can only continue fighting4MEkids by trying to preserve myself.

On dreams

Once dreamt I was running down lush green grassy hill. Exhilarating! Woke happy. My brain was being kind to me!

Nearest I got to that in reality is a few hasty steps after a runaway golf trolley or a wayward widebrimmed sunhat bowling down the fairway.

More than a few frisky steps and it's a case of wailing "Hey, someone, stop it before it crashes into the lake..." Better than an ME crash.

On viruses

When children wME improve, people assume it's leaving the body. I view this as the virus dozing or hibernating! Ease off whenever it wakes.

On kindness of strangers

Totally agree. Small kindnesses make huge difference to people's lives.

Have also experienced kindness of strangers. One guy got out of a train to check with driver that it'd stop where I wanted!

On advice

When u think of it, so much of standard advice to pwme (exercise, sleep, school) only suitable if you're well!

In effect they are saying "Act as healthy people do and you'll be healthy too." I mean what is that? Logical or what?

Yes. 'Services' has become a word to distrust. Services shd consist of practical support (in absence of cure).

Remember u needn't agree to anything you don't feel is right. You can say thanks & you'll consider it.

On ME-affected muscles

It's those who believe that making effort actually causes the body's recovery who are putting the cart before the horse! And causing misery.

Healthy body whose muscles respond normally to exercise gets stronger & fitter as a result. ME involves muscle damage that needs to repair.

In Physios Urged to Go Cautiously (Physiotherapy Frontline) yrs ago I discussed effect of exercise http://tymestrust.org/pdfs/physiosguide.pdf

In response to a question on child numbers

The standard figure media often quoted is 25,000 at any one time. Calculated by me from data known in 90s.

Dowsett/Colby 1997 study http://tymestrust.org/pdfs/dowsettcolby.pdf showed prevalence of 70/100,000 in school roll of 333,000.

Tendency recently has been overestimation based on loose 'fatigue' criteria. Likely includes diff conditions.

On school absence

ME biggest cause of long term sickness absence from school IN STAFF AS WELL AS KIDS. Can't say that's school phobia! We've known since 1997.

Take a copy of Dr Dowsett commentary on schools study: Long Term Sickness Absence due to ME http://tymestrust.org/pdfs/dowsettcolby.pdf

On sharing the problem with Tymes Trust

If u feel hopeless there's usually something you can do to improve things. Even sharing the problem helps. Our Team understand.

Our online publications are available to all and anyone can consult Adv Line. We have an adult gp called '26+' with annual sub.

On managing ME

Quick Tour of ME http://tymestrust.org/pdfs/quicktour.pdffrom @tymestrust covers the basics + I suggest a chat with TT Adv Line: 0845 003 9002.

Tommy Cooper: Man went to doc: "Dr, it hurts when I do that." Dr said "Don't do it!" Quick Tour of ME lists 'convalescence'.

On erroneous child protection cases

1st case I personally knew of child w/ME incarcerated in psych unit for treatment was 90s in UK. Court injunction prevented publicity.

After we attended a CMO Working Group meeting, his paediatrician & I tried to visit. I talked us thro keypad-guarded door but visit denied.

We both attempted to visit the child in the unit because his paediatrician was so concerned about him & thought we should try.

This was before Panorama. Panorama tried to uncover statistics and publicise the problem. I did the questionnaire for the BBC.

And yes, they would not allow a visit from the very paediatrician whose patient the child was until his incarceration.

Frankly I was astounded that they had the power to keep him away. I can assure you there was quite a discussion!

On understanding

So many years in bed or in a wheelchair taught me that only those who've been thro it or cared for someone with it can really 'get' it.

Makes it all the more remarkable when compassionate folk make a real effort to go out of their way to take that leap of understanding

Better late than never! I have an unwritten agreement with friend from schooldays that ALL Xmas/bday prezzies arrive late!

With ME, asserting control of one's own life - rather than submit to controlling 'programs' - is key to helping the body&brain heal.

And finally

Will reply to latest questions tomorrow folks. Oh, it IS tomorrow... This weekend has been like one long #AskJCC!!!

Jane Colby