nadateturbe - it's OK to moan. Conditions that limit one's life are deeply frustrating.
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“Invisible” health conditions
(88 Posts)Wasn’t sure whether to put this in Health, but it’s more of a “chat” than health questions.
Following a very traumatic birth and then subsequent infection, which had me re-admitted to hospital for 7 days, and on very strong intravenous antibiotics, after final baby, at 44, I was never quite the same again healthwise.
After 10 long years and various and ongoing tests of many kinds, seeing specialists and GPs, it was finally decided I had fibromyalgia and subsequently, a neurologist diagnosed ME.
Thank goodness I worked for the Civil Service by this time as they did recognise my conditions and put in place “reasonable adjustments”, which allowed me to have a slightly more relaxed “sickness policy regime” but not some of the things I truly needed.
The biggest issue I had was that when I felt at my worst, I could barely function but I always looked ok.
I’ve always had rosy cheeks and slightly overweight (now more than slightly) and people often thought I was a bit of a hypochondriac.
I rarely missed a day of work, though it was a struggle.
I just wondered if any others here have “invisible” conditions, looking fine, feeling dire?
I’ve accepted my limitations now, having also developed wide-spread osteoarthritis and do what I can when I can, and have two horrible bowel conditions.
I’m old enough to really not care too much about what people think anymore.
Luckygirl3
This is interesting on the issue of living with illness: www.facebook.com/reel/734832109071689
The poem he quoted is so apt... as a river, we fear the ocean.
I follow Dr Sanjay Gupta on FB - he has such insight, as well as being clearly very knowledgeable.
He's a gentle soul - so many have commented that they wish he was their doctor. Me, too!
... and he's very easy on the eye. 
Not a moan - its telling it like it is on a thread where we are explaining to each other how different conditions affect our lives.
I'm learning a lot.
Being heard matters and we choose when and where its right to disclose.
( not my type, but never mind)
www.facebook.com/reel/667435126090089
More from Dr Gupta on chronic illness and the loss of identity. He hits the nail on the head in a big way!
Whenever I have a consultant appointment I always supply a summary of the problem, past medical history, drugs being taken etc. and also include my aims from treatment - e.g. I need to be able to go on running my choir. They have always responded positively to this.
Luckygirl
Many of us here remember clearly the horrendous time you had caring for your late husband. Like many, I cried for you.
As would be normal I doubt very much if you realised how much strain you were putting on your body.
If you just think of the strain your heart was taking with all those adrenaline spikes
The strain on your skeleton through your muscles tensioning.
It surely is no wonder your poor suffered.
Did your own Dr offer any help after the death of your husband.
It’s a very broad and worrying issue for many carers who maybe unaware what is psychologically happening to their bodies.
Thank you petra .... you are right that the stress of those awful years caring for late OH and having to sell our home during covid to pay for his care have taken their toll.
There was no support from surgery but much support from wonderful family.
You are entirely right that all the time we are focusing on our care role our own bodies and minds are taking the brunt of things and these make themselves known after the caring stops.
For me and many others these silent illnesses are now our way of life and I was impressed by Dr Gupta's grasp of what this means to people and their sense of self. I am not sure that doctors in general grasp this. They treat the condition in front of them as efficiently as they can but often fail to fully see what the erosion of all that makes the person can mean.
I worked with elderly people when I was young and with hindsight hold my hand up to not fully grasping this idea.
There is a poem about this which I will try and find.
Sending a handheld to all who are struggling.
"Crabbit Old Woman" By: Phyllis McCormack
What do you see, nurse, what do you see?
What are you thinking, when you look at me-
A crabbit old woman, not very wise,
Uncertain of habit, with far-away eyes,
Who dribbles her food and makes no reply
When you say in a loud voice, I do wish you'd try.
Who seems not to notice the things that you do
And forever is losing a stocking or shoe.
Who, unresisting or not; lets you do as you will
With bathing and feeding the long day is fill.
Is that what you're thinking, Is that what you see?
Then open your eyes, nurse, you're looking at me.
I'll tell you who I am as I sit here so still!
As I rise at your bidding, as I eat at your will.
I'm a small child of 10 with a father and mother,
Brothers and sisters, who loved one another-
A young girl of 16 with wings on her feet,
Dreaming that soon now a lover she'll meet,
A bride soon at 20 - my heart gives a leap,
Recalling the vows that I promised to keep.
At 25 now I have young of my own
Who need me to build a secure happy home;
A woman of 30, my young now grow fast,
Bound to each other with ties that should last;
At 40, my young sons have grown and are gone,
But my man is beside me to see I don't mourn;
At 50 once more babies play around my knee,
Again we know children, my loved one and me.
Dark days are upon me, my husband is dead,
I look at the future, I shudder with dread,
For my young are all rearing young ones of their own.
And I think of the years and the love that I've known;
I'm an old woman now and nature is cruel-
Tis her jest to make old age look like a fool.
The body is crumbled, grace and vigor depart,
There is now a stone where I once had a heart,
But inside this old carcass, a young girl still dwells,
And now and again my battered heart swells,
I remember the joy, I remember the pain,
And I'm loving and living life over again.
I think of the years all too few- gone too fast.
And accept the stark fact that nothing can last-
So open your eyes, nurse, open and see,
Not a crabbit old woman, look closer-
See Me.
Thanks for posting that poem Luckgirl. I asked my DD to read it when she started nursing.
AGAA4
Thanks for posting that poem Luckgirl. I asked my DD to read it when she started nursing.
... it made me cry a bit.
The sentiment SO hits the nail on the head
Thanks Luckygirl and Wyllow3.
Cossy
Samsara1
Cossy I do understand this. I have a blue badge and a Radar key and the looks I get sometimes are very telling. You can't see that I have Lupus (now in remission but it took it's toll), scoliosis, osteoarthritis of the spine, feet, hands everywhere. What they can see is my I hope, temporary gluteal tendonitis as I limp and groan a bit.
I hope you can manage to get out and about and that having a few things like the Blue Badge and a Radar key are helpful.Thank you.
We swapped out our car a couple of years ago to an automatic, with a “button” handbreak and it’s a medium size and great to get in and out of.
I do have a radar key, but sadly, so far, two blue badge applications turned down, due to not “being disabled enough
I do claim PIP, my assessment gave me 10 years of low level care but only 4 points for mobility and though my condition has worsened, if I do a change of circumstances to up my mobility points I risk being moved to Attendance Allowance, where there is no mobility element, rock and a hard place.
I use my PIP at the moment towards massages and cans, both of which I find of great benefit.
Hi Cossy. As you know Blue Badges are done locally. There should be an assessment centre in your county. Have another try for one. My knowledgeable friend says push for an assessment there, and take an impartial person with you eg someone from Age UK or Citizens' Advice. Good luck
Dickens
AGAA4
Thanks for posting that poem Luckgirl. I asked my DD to read it when she started nursing.
... it made me cry a bit.
The sentiment SO hits the nail on the head
Oh, me too, sniffle so lovely.
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