A Life Hidden - Blog posts by Naomi Whittingham

When Coping Is Too Much

https://alifehidden.com/2020/02/25/when-coping-is-too-much/

by Naomi Whittingham

Life has been painful, of late.

Circumstances have brought a profound awareness of my limitations. The ongoing serious illness of someone I love. The approaching first anniversary of my father’s death; the fact that I was too ill to visit the intensive care unit where he spent the final month of his life.

After thirty years, I thought there were few ways left for my illness to hurt me. Now I know the pain of enforced absence during a loved one’s suffering. No other illness-related loss has cut quite as deeply as this, I think. It can be hard to maintain my own sense of worth when reminded of my inability to convert love into physical presence and practical assistance.

At times of additional emotional strain, such as this, the usual day to day limitations become harder to bear. My complete dependence on others; the lack of even basic freedom; the need to spend hours lying in darkness just to maintain a small level of functioning: suddenly I feel the true strain of all these restrictions. It amazes me how I can flip from a state where my illness is bearable, to one where its weight chokes me afresh. Or perhaps my amazement should be reserved for the fact that it ever feels bearable at all…
 
As always I'm impressed with Naomi's writing:

Although I tend to see my illness grief as a negative force to be banished, in reality it is an important part of my true self. My tears and anger represent my belief that there can and should be more than this. Acceptance and optimism have their place, but so too do rage and a refusal to accept. At the core of my anguish lies not defeat but my fight itself. My grief is my scream at the world; my rejection of my suffering; and a promise to myself that my spirit will not be broken.
 
Very thought provoking and moving.

Humans, no matter their circumstances, need time and space to grieve, be angry, be sad. It's only in experiencing these emotions that we learn to cope with them. They're just as much part of life as love, compassion and gratitude.

Experiencing them doesn't mean we aren't grateful for the good things we have.

Most people also want to be needed to a some degree. We all want to be able to support our loved ones when they need it. Sometimes that not being able to reach out to help ease a loved one's pain is harder to bear than your own pain.

I'm so sorry for your loss @Naomi10.
 
A life Hidden: Life in Lockdown: What Matters When All Is Lost

by Naomi Whittingham

https://alifehidden.com/2020/04/09/lockdown/

On the eve of 2020, in New Year Reflections, I looked back on a difficult 2019 and asked: “What might I be called upon to face this year?” I could not have imagined what lay ahead – not only for me, but for the entire world.

Living through the coronavirus pandemic is both a global and deeply personal experience. The world is afraid. With many countries now in lockdown, humanity is collectively facing the loss of freedom: the loss of freedom to move; the loss of freedom to plan; the loss of freedom simply not to be afraid…
 
I particularly liked this bit.
The housebound and chronically ill have generally been viewed with irritation at best and suspicion at worst. This is especially true of government agencies and medical services, who, pre-coronavirus, considered even a telephone consultation to be the most outlandish of requests. As a result, their assistance has often been inaccessible to those who need it most.

From being invisible before, there is a sense of still being invisible now. I have heard many people rightly despair at the limitations of being confined to the house because of the lockdown, but few who have considered what it might be like to face the same circumstances when seriously ill.

I can only dream of being restricted to the house with the health to occupy myself in any way I choose. The thought of being able to leave my bed when I wish, to have sunlight streaming in through the windows, to entertain myself with music and films and learning, creates an image not of oppression but of blissful freedom. Even the opportunity to be bored seems like a privilege. For my mother too, and other carers like her, the idea of this lockdown affording abundant leisure time is very far from reality. Now that we have cancelled external carers for my protection, her every hour is filled with managing my care needs, on top of running the house completely alone.
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It expresses what is very true, that the majority are now getting a taste of what many of us go through, but even still it doesn't come close to many patients experience. Also, there is the difference that the isolation of patients is ultimately involuntary and, while being the best option from a list of bad ones, something that is detrimental to them, while to the majority at this time it is something being done for the greater good - if it wasn't done then the cost to society would be even greater.
 
Andy said:
It expresses what is very true, that the majority are now getting a taste of what many of us go through, but even still it doesn't come close to many patients experience.
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True. A healthy person who has to stay inside all the time will need some sort of outlet(s) - a new hobby, some new online interaction, an exercise routine - to burn off their excess physical and mental energy.

There's just no way that I have any practical tips for someone who is healthy. Having to stay inside most of the time *because you are already sick* is a completely different problem from having to stay inside to avoid being exposed to the coronavirus.

In fact, having to stay inside all the time, but without any ME symptoms at all, sounds like heaven compared to my current situation! (I think most of you would agree)
 
I think that deprivarion Is a key word, again under-used in our campaigning. Disability or even fatigue doesn’t usually or automatically convey the deprivation our cognitive and sensory fatigue especially dictates. Life limiting is another good word.

in fact a lot of disability campaigning is focused on how rich and fullfilling and active life can be with limbs etc not working. ME is often presented as a lesser disability but it’s just very different. We aren’t similar to MS just with lesser neurological disability and a reverse trajectory, get better versus degenerative so therefore less important which is what I think is widely assumed. We are affected with higher cognitive and sensory and ever present weakness/sickness issues which are disabling in a different way AND the outcomes are actually diverse.
 
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