Unfortunately I think that we Are just stuck with double standards. So it’s outrageous for a healthy person to be stuck twelve hours at an air port (think of those phrases “well that’s so many minutes /hours of my life I will never get back”) but fine for sick people to have months on long waiting lists, slow research efforts etc. I don’t necessarily assume any more regard for ME after covid with the issues psychological/exercise can help etc believed, and the double standards , it might even be harder now because of economic strain, although people’s ability to empathize more might grow.
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A Life Hidden - Blog posts by Naomi Whittingham
- Thread starter Andy
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TiredSam
Committee Member
Apparently nobody ever gets any minutes of their life back.
Miranda Hart reads from the article (after about 14 minutes)
Wow that’s amazing reach. Shows how wonderful a write @Naomi10 is.
ProudActivist
Senior Member (Voting Rights)
Should we invite Miranda to the forum? She’s really speaking out about chronic illness at the moment, including ME. She has not disclosed why as yet, but she did say in one video that she is not eating gluten or sugar and was drinking a “medicinal tasting” water with a dash of orange juice... electrolytes, methinks. anyway, if she is going to continue to be a champion she may like to join and while she’s doing a great job so far I am reminded of Martine McCutcheon who said some stuff in tabloid articles about having ME, then (as I remember it) feeling better after treatment for depression etc. and it would be a shame if Miranda also fell into such unhelpful public narratives. It’s so hard to find a well known person with this kind of illness who doesn’t talk clap-trap! I have high hopes for Miranda, actually. She obviously really wants to give people support and a boost.
Anyone can contact her on social media and point her in the direction of the forum and suggest she might like to have a look and possibly join as a supporter. Miranda, if you are already aware of us, do join us if you want to.
Kalliope
Senior Member (Voting Rights)
Another beautifully written and though provoking article from Naomi Whittingham.
She describes among other how the medical gaslighting she experienced as a young, very severe ME sufferer has consequences for her today when deciding what the right precautions are for her as society is opening more up after the lockdown.
The pain of living with chronic illness is not limited to physical suffering, but also encompasses the weight of other people’s reactions and expectations. I have a family who respect and support my choices, but others are not so fortunate and are now facing pressure from loved ones to embrace opportunities that still feel unsafe. As a society we favour terminology that frames illness in terms of battle. Charging out to meet one’s foe with sword drawn can feel morally superior to a gentler, more considered form of resistance. In truth there are times when each has its place.
At this time of turmoil and uncertainty, I have to remind my adult self of the words I would offer the broken, younger me: strength comes in many forms. Courage is not about abandoning caution, but knowing when to apply it. The ability to respect one’s own limitations is not a sign of weakness, but a manifestation of wisdom and self-awareness.
The Uncertainty of Life After Lockdown
She describes among other how the medical gaslighting she experienced as a young, very severe ME sufferer has consequences for her today when deciding what the right precautions are for her as society is opening more up after the lockdown.
The pain of living with chronic illness is not limited to physical suffering, but also encompasses the weight of other people’s reactions and expectations. I have a family who respect and support my choices, but others are not so fortunate and are now facing pressure from loved ones to embrace opportunities that still feel unsafe. As a society we favour terminology that frames illness in terms of battle. Charging out to meet one’s foe with sword drawn can feel morally superior to a gentler, more considered form of resistance. In truth there are times when each has its place.
At this time of turmoil and uncertainty, I have to remind my adult self of the words I would offer the broken, younger me: strength comes in many forms. Courage is not about abandoning caution, but knowing when to apply it. The ability to respect one’s own limitations is not a sign of weakness, but a manifestation of wisdom and self-awareness.
The Uncertainty of Life After Lockdown
Shinygleamy
Senior Member (Voting Rights)
The experience I had with doctors when i had severe m.e as a child (which was awful), completely destroyed my confidence. It's taken me years to get over it and I still expect people not to believe a word I say. I wouldn't ask any questions unless I already knew the answer, I wouldn't ask anything health related unless I'd already diagnosed myself.
Coronavirus is discouraging me from going outdoors as if I caught it I would really regret it, but on the other hand I am socialising a little as although there is a risk i've missed out on so much already.
Coronavirus is discouraging me from going outdoors as if I caught it I would really regret it, but on the other hand I am socialising a little as although there is a risk i've missed out on so much already.
Kalliope
Senior Member (Voting Rights)
Naomi10
Established Member (Voting Rights)
Thank you for sharing @Kalliope
@Shinygleamy I’m so sorry to hear how you’ve been affected. I can relate x
@Shinygleamy I’m so sorry to hear how you’ve been affected. I can relate x
Kalliope
Senior Member (Voting Rights)
Naomi Whittingham has published a new blog post today. Wise and beautifully written as always.
Is There Hope in a New Year?
Life has made me wary of looking too far ahead. Even before the turmoil of 2020, my road was one of uncertainty. New Year has long felt like standing on a cliff edge and looking down: twelve whole months can be too much to contemplate all at once.
Reminders of time passing can be hard to accept in the context of chronic illness. Upon reaching a year’s end, I can’t escape a fleeting sense of sadness. Another year gone, with me still not where I would wish to be. Though realistically, after all this time, I couldn’t define where that place might be, nor accurately measure my distance from it. I am where I am.
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I suggest we make this a thread for her blog posts, so that from now on links can be collected in one place.
(Moderator note: we've merged threads on Naomi's previous blogs into this thread too.)
Is There Hope in a New Year?
Life has made me wary of looking too far ahead. Even before the turmoil of 2020, my road was one of uncertainty. New Year has long felt like standing on a cliff edge and looking down: twelve whole months can be too much to contemplate all at once.
Reminders of time passing can be hard to accept in the context of chronic illness. Upon reaching a year’s end, I can’t escape a fleeting sense of sadness. Another year gone, with me still not where I would wish to be. Though realistically, after all this time, I couldn’t define where that place might be, nor accurately measure my distance from it. I am where I am.
----
I suggest we make this a thread for her blog posts, so that from now on links can be collected in one place.
(Moderator note: we've merged threads on Naomi's previous blogs into this thread too.)
Last edited by a moderator:
Kalliope
Senior Member (Voting Rights)
Kalliope
Senior Member (Voting Rights)
A Life Hidden - Emily at 40: In Celebration and Sorrow
Quote:
In the week when Emily would have turned 40, we remember her with love, admiration and grief. A vibrant spirit trapped within a body crippled by suffering, and badly let down by the very system that should have protected her. But a spirit which nonetheless found a way to shine in life, and which continues to shine in death. Among all who loved her, there is a determination that neither Emily as a person, nor the fate that she suffered, will ever be forgotten.
It is only fitting that the final word should go to Jane, who lost her only child when Emily died. Her devotion ensured that Emily’s life, despite all its hardships, was one that was always filled with love.
“I miss our animated discussions and our giggles. Tiny moments, that to others would seem insignificant, snatched from us. I remember her as my beautiful daughter, my best friend, my ally. She enriched my life in so many ways.”
Naomi's article about the singer Kara Jane Spencer is on this thread:
https://www.s4me.info/threads/kara-jane-spencer-uk-singer-with-severe-me.15101/
https://www.s4me.info/threads/kara-jane-spencer-uk-singer-with-severe-me.15101/
Kalliope
Senior Member (Voting Rights)
What Freedom Day Means for Those Who Aren't Free
Quote:
One of the greatest challenges I’ve faced over the past year has been protecting my fragile body while at the same time not perceiving threat in every contact with the outside world. Finding the balance between sensible precaution and damaging paranoia can be difficult when surrounded by so much uncertainty. I have struck that balance as well as possible, as have all those I know in similar situations. I have witnessed such fortitude and humour among my seriously ill friends in the face of the pandemic; a pandemic which has added further complexity to already very difficult lives.
Ultimately my approach to living with the ongoing covid situation is the same as with my illness as a whole. I accept my limitations, while living the best life I can within them. I mourn all that has been taken from me whenever necessary, but I cherish every small thing that remains. I gently stretch my boundaries when it is safe for me to do so, but – and this final one is very much a work in progress – I trust my own wisdom when it tells me that something is too much for me.
Quote:
One of the greatest challenges I’ve faced over the past year has been protecting my fragile body while at the same time not perceiving threat in every contact with the outside world. Finding the balance between sensible precaution and damaging paranoia can be difficult when surrounded by so much uncertainty. I have struck that balance as well as possible, as have all those I know in similar situations. I have witnessed such fortitude and humour among my seriously ill friends in the face of the pandemic; a pandemic which has added further complexity to already very difficult lives.
Ultimately my approach to living with the ongoing covid situation is the same as with my illness as a whole. I accept my limitations, while living the best life I can within them. I mourn all that has been taken from me whenever necessary, but I cherish every small thing that remains. I gently stretch my boundaries when it is safe for me to do so, but – and this final one is very much a work in progress – I trust my own wisdom when it tells me that something is too much for me.
Sly Saint
Senior Member (Voting Rights)
Kalliope
Senior Member (Voting Rights)
A Life Hidden: The Truth (and Myths) About Positivity and Determination
Quotes:
It may be comforting to the wider world to believe that illness and disability are a state of mind, and that those afflicted can achieve wonderful things if only they dream big enough. But it simply isn’t true.
...
Contrary to popular perception, achievement and overcoming rarely arrive in a blaze of glory. More often they are a quietly flickering light that whispers: “I can face another day.” Such strength of spirit will never make the news, but it is where true determination lies.
Quotes:
It may be comforting to the wider world to believe that illness and disability are a state of mind, and that those afflicted can achieve wonderful things if only they dream big enough. But it simply isn’t true.
...
Contrary to popular perception, achievement and overcoming rarely arrive in a blaze of glory. More often they are a quietly flickering light that whispers: “I can face another day.” Such strength of spirit will never make the news, but it is where true determination lies.
Kalliope
Senior Member (Voting Rights)
New blog post from Naomi Whittingham. Reading her texts is like a good therapy session.
What It Means to Be Clinically Vulnerable in a World of Covid
quote:
The level of restriction endured by everyone was punishing, and I’m glad that, for the majority of people, such hardship is now at an end.
But there are those of us for whom normality remains a distant dream; those of us for whom lockdown never really ended. We, the clinically vulnerable*, live in a parallel universe where caution is still threaded through every day and where, for many, isolation is ongoing. It can be a lonely place. And the loneliness stems not so much from the continued physical separation from the world, as from the sense of being completely forgotten.
What It Means to Be Clinically Vulnerable in a World of Covid
quote:
The level of restriction endured by everyone was punishing, and I’m glad that, for the majority of people, such hardship is now at an end.
But there are those of us for whom normality remains a distant dream; those of us for whom lockdown never really ended. We, the clinically vulnerable*, live in a parallel universe where caution is still threaded through every day and where, for many, isolation is ongoing. It can be a lonely place. And the loneliness stems not so much from the continued physical separation from the world, as from the sense of being completely forgotten.