Article from Farmers Guardian - Farming with ME

[Christoph1945]

Lightening process was a three day course, I sat in cos I was interested and v. keen /desperate to sort my son.Very nearly didn’t go second or third day because son was in such malaise and not responding to anything that was said...waste of money me thinking...
Then 20 minutes before end of last lesson the practitioner lady said “your son just smiled, this will work for you.” Paid the best £250 for that sentence!

All I really learnt was to find a really positive memorable experience that my son and me as his carer enjoyed together....ours was standing on a stewardship headland on a sunny day watching skylarks.
Now whenever at the first sign of the malaise appearing you train yourself to recreate in fine detail the sights sounds and smells of standing in “that “summer meadow gazing at an ascending skylark.
Effectively we retrained his mind whenever the malaise threatened to pre- empt it and redirect to that skylark watching.

Like driving a long a rutted track, you need to anticipate the ruts and avoid them at the last minute...you have to recognise your unique cfs symptoms and stop and relax and divert your mind for ten minutes or so to become totally absorbed by the meadow and skylark scene. Do it thoroughly; create that pleasurable memory/experience all absorbing at first sign of impending bout of cfs.
It’s probably easier to help a child and maybe it will not work for some but in my experience it was the turning point in not accepting ME.

I imagine that you probably keep a diary and record daily events that bring struggles and those that are rewarding. Do you keep a dietary diary and perhaps notice more episodes following certain foods?

When you strongly visualise those rewarding events gently squeeze your right earlobe and later, when you have need of that lift in spirits, gently squeeze the earlobe and hay presto .... the emotion will arise within. May take a bit of practice but it must be worth a try?

Oh shoot, I forgot to bill you for the tip ..... here ya go £00.00p

 

[renewablejohn]

My eldest daughter has ME. It started as she was training to be a Vet at Bristol Uni. They where very good although it took nearly a year to diagnose by which time she was a wreck and could not continue with her vet studies. She returned home to recover and recuperate whilst being tested for everything. Everything to do about ME on the internet was read and tried and after 6 months we did see an improvement. That improvement drove a desire to return to Vet school and Bristol Uni were brilliant allowing her to slip a year. Fortunately my wife is a specialist teacher and was able to identify teaching aids which made her return to Uni easier. She still had reduced stamina but that aim to qualify gave her the determination to beat the disease. A great day when she qualified and has been working ever since. She still suffers from ME but it is manageable. Most noticeable difference to her diet is that she has gone diary free whether it helps or not I am not convinced. Thankfully she realised at an early stage that working 5 days a week as a Vet was to much for her ME condition so now tries to limit it to 3 days a week. She has now a 7 month old child which must give hope to any ME sufferer as in the dark days it would have seemed impossible. Sorry for the ramble but some folk believe ME does not exist.

 

[Christoph1945]

Not a ramble but a most encouraging post for many others who are struggling with the condition. Has your daughter considered trying a gluten free diet just to see if it helps?

 

[renewablejohn]

Funny you should say as the wife was diagnosed as celiac and now has a strict gluton free diet and the improvement in her health has been dramatic. Needless to say once she had been diagnosed both my daughters where tested and both tested negative although we are all eating more Gluton free products as we try and cook on an inclusive basis rather than make the wife out as being a freak needing a seperate diet.

 

[PaulNix]

Are there any more suffers of this dreadful problem on here? How do you keep on farming?
WB

Yep, one here, started with Glandular fever when I was eleven. rough for mostly five years, recovered and played Rugby and was pretty fit and strong, alas went into a gradual decline about fifteen years ago where struggled and had to pace myself more and more, missing out on a social life just to keep working, but was living with it and managing then got hit four years ago September with a stomach bug which made me pretty much house bound for twelve months and even even something so mundane as having a bath would of been three hours in bed after, now I spend most of the working day just sat inside ( on here ) or pretending to keep busy outside, an hours yard work can take me four hours.
Lucky my wife and father kept things ticking over while we downsized the herd and let out a chunk of land, now we keep a small herd just to enough to say we are farmers, I don't do any contracting or driving work now and just potter about, sad to think at 40 I was about done and semi retired through ill health.
Thing is you get used to hiding this condition so much that most people didn't realise I had it until I was stuck inside for months, hopefully your daughter can recover enough to led a reasonably normal life, pacing certainly helps.

 

[PaulNix]

It’s probably easier to help a child and maybe it will not work for some but in my experience it was the turning point in not accepting ME.

That sentence is ME treatment in a nutshell in my experience, our local Hospital had a specialist in ME because there is quite a hotspot of cases and they wanted to research it more, they would only take on children to treat because in their own words, "We have a limited budget and children get over ME, adults don't. "

 

[Christoph1945]

Funny you should say as the wife was diagnosed as celiac and now has a strict gluton free diet and the improvement in her health has been dramatic. Needless to say once she had been diagnosed both my daughters where tested and both tested negative although we are all eating more Gluton free products as we try and cook on an inclusive basis rather than make the wife out as being a freak needing a seperate diet.

I have never been diagnose as a coeliac, or a sufferer of ME, but as a life long sufferer of a number of problems (both physical and psychological) l only managed to stumble upon the fact that gluten possibly presented something of a root of some of the my problems.

Being conscious of the fact that I was overweight I dropped all cakes, pies, bread, and biscuits from my diet and proceeded to slowly lose weight. One day, having taken the family shopping, I bought my self a couple of cold sausage rolls and returned to the car alone, to enjoy my favourite snack.

Sitting alone in the car I enjoyably munched on my snack and then relaxed; only to start feeling an intense fatigue and brain fog. Over the years that followed I learned to link gluten with my regular fatigue, anxiety, and depression but had never contemplated that some of my symptoms were similar to some of those suffered by an ME patient.

Stay safe, stay well, and please remember that we are all in this together, one way or an other.

Chris

 

[Wolds Beef]

Any one else suffering this dreadful problem and wish to air there story and ideas of how to combat it. I am sure we would all like to hear them.
Do not forget Countryfile! tonight has the Lincolnshire wolds on.

 

[Wolds Beef]

@H.M. They did not extoll the virtues of the Lincoln Red enough! But it was nice to se them on Countryfile. Will also be able to watch on the repeat this weekend.
WB

 

[delilah]

5 live have just had an excellent piece on ME in the context of its similarities with long covid, worth a listen, I guess 5 live can be found on listen again, started about five past 6.

 

[Robt]

If you have ME , it’s worth googling Whitney Defoe ..... it doesn’t so much give hope as gives you and idea and hopefully that medical science can find a cure