“Invisible” health conditions

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.

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

Thanks Luckygirl and Wyllow3.

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 for posting that poem Luckgirl. I asked my DD to read it when she started nursing.

"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.

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.

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.

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.

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)

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.

nadateturbe - it's OK to moan. Conditions that limit one's life are deeply frustrating.

Nurseundercover it was so good to read what you said about M.E. I feel guilty sometimes when I know people with very serious illnesses and think but they can do more than me. My M.E. is so limiting. I see no one most of the time except my husband. People don't understand total lack of energy and brain fog. Even doing a crossword together I often feel faint with the effort after maybe ten minutes and have to lie down. When I can I do short walks, as I know its important. The only pastime I can manage regularly is jigsaws. Its such a boring isolating existence.
I wish more people understood.
(Sorry, just having a moan.)

Special large not social large. tho its gets pretty sociable when 7 are in there if a gran or grandad is with.

Luckygirl you are a valued Rellie 🙂 Yes my family find the same, they have 4 kids and a social large vehicle so it's needful.

My blue badge is a godsend .... it means I can park near enough to places and not be flaked out or fall over through poor balance by the time I get there!
It also makes my family very enthusiastic to take me to events as they know they will be able to park nearby!

Wylow3 I see every week many able bodied people using the disabled parking. They don't display a blue badge so not hidden disability. Sometimes during busy times, I have to drive around until I can find parking near the entrance.

I would get a blue badge if I asked, as I can't use public transport and find going to unfamiliar places alone very difficult for over 20 years now, its a matter of doing it so I can go to someplace in town I really want to go to like our Quaker Central meeting and all the things that happen there.

I report people at the gym who use it falsely. My DGD at 12 is vv severely disabled in multiple ways so of course they have one and it helps a lot. Makes me cross with lazy people at the supermarket too tho car parks are OK for me.

Musicgirl

I am hearing impaired to the point of it being considered a disability. People can’t see it and I have lost count of the times I have felt obliged to apologise for not hearing someone coming up behind me or to the side of me. I have fairly powerful hearing aids but they are just that aids. People without hearing issues think they magically restore normal hearing. They are a tremendous help and I could not manage without them but the number of people who accuse me of not listening because I have not heard them or having no understanding that things that work for people with normal hearing do not work for me. Subtitles are not an optional extra and hearing fatigue is all too real. The strain of listening all day long is exhausting. Hearing people have no idea.

I am also a functioning depressive. It is something I try to hide it because even though I know it is nothing to be ashamed of and, goodness knows, we hear enough about “mental health” these days, l feel ashamed that I cannot fully get over it. I try to put on a public persona of a happy person. Despite all this, I am an optimist by nature. I try to be as outgoing and interested in others as possible because I am a people person. I think most people see me as an extrovert but, in reality, I am an introvert and need a lot of time to myself in order to recharge my energy and batteries.

I understand. I wear hearing aids in both ears and the other day I had to explain to my grandson that I didn't hear him when he said something to me. He thought I had ignored or was cross with him. I showed him my two hearing aids and he understood. I mostly need to have the subtitles on especially when watching American programmes.

I have survived three breast cancer surgeries, one resulting in a mastectomy, then years later the silicone implant had to be removed because it was leaking. Resulted in only 95% being removed as to remove the remaining 5% would have left a whole in my chest.

I have had two total knee replacement surgeries due to osteoarthritis and last year had a total hysterectomy, where pre cancerous cells were found on my cervix and uterus. I guess I was just lucky because I can tell when something is not right with my body. The surgeon thought I did the right thing asking for a hysterectomy because of the niggling pains i was experiencing in my tummy.

On top of it all, I have had two cataract surgeries. And now suffering from backache if I walk a short distance. MRI shows twisted spine to the right because of not being allowed to carry on my left mastectomy side. Some discs are herniated. Seeing the physio on Monday.

I do have a blue bad but despite all that I look very able bodied and feel guilty when I grunt and struggle to get out of my car in the disabled bay. Onlookers don't understand how some disabled people suffer in silence.

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.

I thought of you had PIP (regardless of level), you invariably were entitled to a blue badge. Keep trying Cossy

This is interesting on the issue of living with illness: www.facebook.com/reel/734832109071689

Mary doll, we have compared things in the past but I don’t suppose either of us knew the other also has Sjogrens.
I was off biological February till June, to give my immune system time to recover after three infections. Inevitably, inflammation went potty. On reflection the sjogrens flare was triggered by infection and a family trauma. I’m away this week, GP again next week and she’s expecting to refer to rheumatology and push neurology for an earlier appointment.
I wish the impact of auto immune conditions had more publicity and fund raising.
Carry on Marydoll and others x

Like others above, these hidden disabilities have both sad sides and plus sides. the sad side was crashing and giving up a promising career as an artist: I was showing internationally but just stopped and not done a lot since then just modest amounts, and I could not hold down a job, too vulnerable to the slings and arrows of the "knife in the back" side of many jobs: my first marriage ended becuase of it, tho we ar enow good friends and share our DS and DGC. It has taken a long time for Ds and DiL to really understand an accept, but they do now, and so on.

What is the plus side you ask? Well, it has made me a better listener I think, and of course, given the rate of MH difficulties in the population, if I disclose aspects of my condition, it gives others a chance with a sigh of relief from them "me too".

I'm going to come out of the closet and say that I have had at times very severe mental health problems since 2002/3 and been in the care of the relevant people. I get PIP low rate. I am what is best described as bi-polar 2 (mood swinging disorder)

Which is very different from bi-polar1, where people when manic get can get psychotic: I have had so much help and treatment over the years it is a lot more settled now, but basically there has been periods of suicidal depression including one serious attempt early on which alternated with heightened moods where one tends to do too much and be in laywoman's terms "a bit hyper".

Years of therapy have paid off inasmuch as I self watch and ameliorate both ends of the spectrum, but there is always a risk when there is a big emotional trigger.

You can imagine what a trigger being sexually assulted in the safest of places did to me last autumn when although the police believed me many around did not:

and it has been a triumph for me to get through that without it triggering a low, tho it left me with chronic fatigue (not ME thank goodness) and is life limiting but not ME wise.

And of course it is completely invisible since I always take care to be at least minimally presentable in bad times or just never go out and so on. but in good times - and there have been more since good treatment and maybe just getting older and wiser 🙂 - well no one could possibly know, but it is only just really possible to talk to many people about it without assumptions being made.

I do talk about it with others of course when it feels safe. I find one spots them and are able to share without going on about it.

And reading many people above I see its the same - people putting you down because it doesn't "look" like you are suffering the physical or mental pain that you do (for one rarely gets one totally without the other).

I know our O/P cossy understands these matters all too well.

Lots of brave people upthread making the best of matters, and I believe it's good to speak up so that people in general are under and more accepting. (tho I know I can get strong in N and P)

My children are always telling me to rest and stop doing so much.

None of us know how long we have left and it is frustrating to waste any of it, so on we bash ... Exactly Luckygirl.