A Life Hidden - Blog posts by Naomi Whittingham

[Sly Saint]

The delay between the BACME guidelines being released in January – which is when I began writing – and my posting this analysis in September and October, gives some idea of the pace at which I am forced to work. (My relapse earlier in the year delayed things further, as I had to abandon writing completely for some months.)

The majority of this series has been written in short sessions of around 15 minutes, lying flat in bed (the position in which my brain functions best) and typing on my phone. I have had to neglect numerous other activities in order for it to be possible. The finished product creates the impression of high cognitive capacity. This is an illusion, stitched together through a year of small blocks of functioning.

thank-you so much @Naomi10 for what has clearly been a huge undertaking.

I hope that your words will be read by many and taken on board by those in positions to make a difference.

 

[Naomi10]

Great writing Naomi, thank you for spending precious energy on this.

Thank you @Andy

 

[Naomi10]

thank-you so much @Naomi10 for what has clearly been a huge undertaking.

I hope that your words will be read by many and taken on board by those in positions to make a difference.

Thank you @Sly Saint, and for getting me involved in this in the first place! I very much hope the same as you.

 

[Trish]

Such powerful writing, done at such cost. You are a marvel, @Naomi10. Thank you so much.

 

[Naomi10]

Such powerful writing, done at such cost. You are a marvel, @Naomi10. Thank you so much.

That’s very kind of you - thank you

 

[Barry]

“Trying to create healing through sensory exposure - or any form of activity - is absurd at best, and dangerous at worst. It is akin to believing that because healing a broken leg allows a return to playing sport, a return to playing sport must therefore heal a broken leg.”

“Professionals properly trained in treating severe ME would make an immeasurable difference to the lives of many. BACME have missed a vital opportunity to support this.”

@PhysiosforME.

 

[PhysiosforME]

@PhysiosforME.

Totally agree with this

 

[Eagles]

Congratulations to Naomi –

A Life Hidden – the First Year

https://alifehidden.com/2019/11/25/first-year/

by Naomi Whittingham

A Life Hidden is a year old this week. This milestone is an opportunity to look back on the year that has passed, and also to thank everyone who has supported my writing during this time.

On a personal level it has been a difficult year. Shortly after launching the site, I suffered a relapse and close bereavement, the impact of which prevented me from writing for a number of months.

Nonetheless, the response to A Life Hidden has been exceptional, with well over 10,500 unique visitors in this first year. I have received many wonderful comments from people around the world who have found the site helpful. It means a great deal to know that my writing has touched so many.

I had to make the difficult decision to turn off commenting under my posts here, but feedback is very welcome and I am grateful to everyone who has contacted me through social media and email. I am always open to suggestions and constructive criticism too.

To mark the first anniversary of A Life Hidden, I have compiled quotes from some of the most popular and notable pieces of the year. If this is your first visit here, do have a look around. There are many other articles besides those summarised below.

Thank you for being part of this first year…

 

[Naomi10]

Thank you @Eagles. Your support this year has been much appreciated.

 

[Kalliope]

Another wise blog post from Naomi Whittingham:

The human mind likes to organise and label. We collect up days and file them as years and decades, attaching significance to these measurements of time. In reflecting on the year or decade ending, it is tempting to view the past as a prediction of what is to come. In reality the calendar has no bearing on fortune, either good or bad.

I find it more helpful to think in terms of seasons. To see myself as part of the continuous cycle of nature as it moves between darkness and light; dormancy and growth. The blackest night does not preclude the onset of dawn; the most bitter winter contains the seed of spring. All are part of the same whole.

A life hidden: New Year Reflections

 

[Mij]

This is beautifully written. Thanks for sharing.

 

[Kalliope]

This is beautifully written

Indeed. I am so impressed with her writing, filled with gems like this:
Rather than greet a year with open arms and loud cheers, I tend to avoid eye contact with the newcomer and simply hope for quiet coexistence.

 

[Naomi10]

Thank you @Kalliope and @Mij It was a difficult one to write and I really appreciate your comments.

 

[NelliePledge]

Thanks @Naomi10 ive shared this on my Facebook people who follow me are just friends and family who don’t have ME. I took the opportunity of new year to do my own post about my 2 highlights of the year one of which was MillionsMissing and included a photo of myself at the event. So you inspired me to do some new year awareness raising.

 

[Kalliope]

Another thoughtful blogpost from Naomi Whittingham marking the 30th anniversary of the day she became ill.

Ultimately today is just another day, which I will live as I do any other: working around my severe limitations to find purpose and enjoyment. When I think of the girl who fell ill 30 years ago, I will do so with sadness – but also with pride for all she has survived.

https://alifehidden.com/2020/01/11/30-years/

 

[ahimsa]

Thank you @Naomi10 for your blog post

This month, Jan. 2020, marks 30 years of illness for me, too.

However, I was not nearly as young when I got sick. I was 29, not young girl.

Also, I don't have a specific date. Mine was not a sudden/instant onset, but also not a gradual onset that took years.

Briefly, I caught some virus in late Dec. 1989. I thought I'd recovered and went back to work in Jan. 1990. But I kept getting symptoms and taking lots of sick days to rest/recover. I went to doctors, no answers, then finally had to go out on medical leave in March 1990.

I don't know the name for this kind of 2-3 month long onset after a virus so I can never answer those polls that ask whether my onset was sudden or gradual.

Anyway, these anniversaries can be tough even when there is no single date to point to where you can say, "That was the date when everything changed."

 

[DokaGirl]

My onset took a step-wise approach of about 6 years, getting more and more symptoms, and more severely affected with each passing year.

I count January as my anniversary date - 35 years.

@Naomi10, thank you for your beautiful writing.

A sad anniversary, but also a celebration of carving out what we can of life with ME.

 

[Naomi10]

Thank you @Kalliope, @ahimsa and @DokaGirl for your kind words.

@ahimsa, there seem to be a lot of us who became ill in 89/90. I know several just among my friends.

 

[ProudActivist]

Even your quick and spontaneous posts are beautifully written and expressed. They always move me and I identify with so much.

I seem to come across quite a few others who became ill around 1999 like me. I wonder if there were surges or we just notice people on the same timeline as ourselves?

 

[Naomi10]

Even your quick and spontaneous posts are beautifully written and expressed. They always move me and I identify with so much.

I seem to come across quite a few others who became ill around 1999 like me. I wonder if there were surges or we just notice people on the same timeline as ourselves?

Thank you

I think I’ve heard that there was a peak around 89/90 - though I’m not sure if that is backed up with reliable data. As you say, we will tend to notice people with similar dates to our own.