Plea to a GP - a poem

[Cherylclaire]

Well, I've lost a few teeth

And I don't have much hair.

My brain's a bit woolly-

It's been a bit of a mare.

Half of my symptoms

Go unrecognised-

Like those funny yawns

(Or would you say "sighs"?)

I inject myself now-

Every three months won't do,

But you only know that

If it happens to you.

I'm not wishing it on you-

It can't be your fault

That none of you seem

To be properly taught.

I get dizzy, forgetful,

Lose time in my day.

There's a noise in my ears

That will not go away.

Because I can't concentrate,

I can't do my job.

There's no place for me

To earn a few bob.

"What about part-time ?"

I'm hearing you say:

Just which days can I

Guarantee I'll be okay ?

Movements, lights and noise

Make even shopping a trial

And confusion sets in

Around the fourth aisle.

It seems to take hours

To get to the till,

But my back starts to ache

If I have to stand still.

And then there's the yawning

While I'm in the queue-

So loud they start laughing,

But what can I do ?

I shrug and laugh back-

Can't wait to get in the car,

I wind down the window

It's not very far.

Put the stuff in the freezer

As fast as I'm able.

Throw myself on the sofa

And glasses on the table.

I feel the trickle

Just under my skin-

To my soles, to my fingers

And then I give in.

I sleep off my exhaustion

For three hours plus.

Would you want that life-

Would you like to be us ?

I lost my career,

I lost my injections-

I gained osteoporosis

And a string of infections.

Just tell me how to get back to my life,

My sense of purpose,

The love of my wife.

Forgive my impatience

But it's been a few years

And if I don't stay angry,

I'll wind up in tears.

If it takes more injections,

Then I'll self-inject-

But please allow me

A little respect.

I'm not an addict

And I'm not depressed.

I'm not that bothered

If you're not impressed.

One day I'll get my answer

And you'll apologise

Because it will have a name-

One you now recognise.

[bookish]

Sending a virtual hug as I feel the power in your words and weep a little. I'm trying to stay away from angry but it is a fine line xx

[Cherylclaire Forum Support in reply to bookish]

This poem is about how I was and not how I am today. Supermarkets are no longer a problem for example.

I am unlikely to accidentally burn down the house or flood it now.

I do not accept that I'm done yet with improvements.

An answer would be nice but not essential now.

PS: Anger has sometimes been the fuel that got me back up the hill (literally not figuratively): my only reliable source of energy.

[bookish in reply to Cherylclaire]

That really rings bells with me. Anger is sometimes my fuel too, but I manage it more wisely than I once could. I am so pleased that you have made and continue to make improvements. I am definitely not done yet. Best wishes

[deniseinmilden]

Completely wonderful and hard hitting at the same time. It so resonates with me - and I find this important as it gives me a little bit of "permission" to be myself, knowing that I'm not alone in my daily struggles. Thank you!

Just shows what SI has done for you - fantastic! Well done! 😃 xx

[Cherylclaire Forum Support in reply to deniseinmilden]

This is true- I would not have been able to express my feelings when I was this ill.Now I can.

So improvements possible long after everyone has given up on you !

[deniseinmilden in reply to Cherylclaire]

Amazing isn't it - and they just creep up over the years! 👍 X

[Nackapan]

Perhaps a few GPS would 'get it ' more reading a good flowing poem.

Very poignant.

Thanks

[Cherylclaire Forum Support in reply to Nackapan]

It took a long time to reverse this downward spiral.Possible though slow.

Make sure you get your treatment ringfenced once and for all.

If they believe that there is something else going on with you, they should have been pulling out all the stops to find out what - find it and then treat it.

And if they don't ? They need to listen to you.

[wedgewood]

Thank you Cherylclaire . Wonderfully put . It’s so hard to deal with the emotions that are generated by the treatment one gets from GPs if ( as in my case) the once every 3 monthly jab is insufficient. Your poem has brought it all back . The combination of anger and sadness and frustration is so potent . I’ll never forget it . I could not believe that i was living in the U.K. , which I’d always thought was a civilised country . It was , and still is, when i read on this forum that this medical mindset still prevails , a terrible nightmare .

[Cherylclaire Forum Support in reply to wedgewood]

To be that ill, and keep having to convince over and over.

Why the alarm over high serum B12 - yet none about hair/teeth/word/memory/concentration/job loss ? Makes no sense to me.

I was frightened that I wasn't going to stop deteriorating, more frightened that no-one who could help me was going to !

Yes, nightmare.

I still keep daily records, still take photos of visible symptoms at their worst - in case anyone shows an interest, finds a pattern, finds a solution one day - but most of all, in case anyone disbelieves me.

[Nackapan in reply to Cherylclaire]

Yes . I also keep records of symptoms updated and photos .So many for so long woujd be difficult otherwise.

I've sent in with my letter

Ongoing symptoms list.

What supplements I take .

Also requesting bloods.

Its allways needs a request.

Given I'm on iron another oversight .

There are alof of 'reviews' going on.

Some of which j think on catch up to legally cover themselves snd end of budget year?

So many have stated about valuable clinical skills being lost.

It still 'rings in my ears ' when j asked the dentist if b12 deficiency csn affect your teeth.

"Of course it does"

Was his reply.

[Cherylclaire Forum Support in reply to Nackapan]

Sometimes I feel that the photos are for me: is this anyone's idea of "normal " ? Keep checking.

It really isn't normal - not the sore, split corners of my mouth, not the grey -coated tongue with red burning edges, not the yellow-grey skin, not the hair-loss, not the hamsterface. Not any of the singularly trivial everyday symptoms that make me not me anymore.

Can B12 deficiency affect your teeth ? Of course it can. It affects everything. Teeth, gums, hair, eyes, nails, skin: all visible, but who is looking ?

My ENT consultant agreed with me about haptocorrin: if your saliva glands are infected because your saliva ducts are impacted, how can haptocorrin be produced ? If not produced, what is protecting your extrinsic factor B12 from stomach acid ?

In other words, how can you get any useful B12 from your food/ from tablets etc. ?

You can't.

[Narwhal10]

Thank you Cherylclaire,

It also resonates with me. I’ve come a long way but still struggle to stand in a queue, I’ve sat on pavements and bus stops as my legs give way. At times, I get so exhausted, my body aches and I want to cry but don’t. I sleep on my sofa as I can’t limp to bed.

Recently, I had my contraceptive implant changed by a lovely female doctor. She took my medical history and was flabbergasted when I said that I was practically bed bound for 6 months. I offered, it gave me opportunity to learn (even with eye tremors) and said my temperament is introversion (a self-confessed nerd). I went on and on about PA/vitamin B12 deficiency, she asked ‘What had changed ?’ regarding my social skills.

I smiled under my mask, and shrugged. Nothing, I thought, unbeknownst to most, introverts will talk at great length on subjects they are deeply passionate about, wishing to educate and make others understand. I take every opportunity.

When the doctor had trouble locating my old implant as the ‘white dots’ on my skin are also a sign of where it’s located, I told her, that’s vitiligo. Also associated with autoimmune diseases. I’ve got legs like a cheetah.

Best wishes.

[wedgewood in reply to Narwhal10]

I’ve got those white dots all over my legs too , but nowhere else . Being white skinned they hardly show at all . Also I’m not a sun-bather, and tanned skin would make them much more apparent . So I can give them a name now . I wonder if it’s common amongst P.A. patients .

[Narwhal10 in reply to wedgewood]

Hi Wedgewood,

Just an easy read article in an American Rheumatology Journal (2015) which mentions neurological diseases (1st paragraph) and PA (5th paragraph) :-

the-rheumatologist.org/arti...

Best wishes

[wedgewood in reply to Narwhal10]

Thanks for that reference Narwhal10

[Cherylclaire Forum Support in reply to wedgewood]

Hi Narwhal10 and wedgewood I remember once seeing a list of symptoms (obviously not an NHS one) that included white spots/patches on forearms -and thinking "I've got those".

Never thought anything of them, just part of me.

My mum had vitiligo - started from a reaction to a childhood vaccination (she couldn't remember what for) and spread from the top of her arm gradually over the years to cover her shoulder and part of her chest and back. She also has psoriasis -again patches of skin affected. In later years, the patches on her legs became ulcers.

Treated effectively with Manuka honey- but as fast as they were being cleared up, more would appear.

Auto-immune reactions.

Legs like a cheetah : lovely image. Wouldn't that be great ?

[Narwhal10 in reply to Cherylclaire]

Sorry to hear about your mum, ulcers sound rather painful.

My legs may look like cheetahs but at times they work like Bambi’s.

Bambi trying to walk on ice. The leg weakness B12 deficiency can cause

[Cherylclaire Forum Support in reply to Narwhal10]

Yes, I used to go with her just to hold her hand. Very painful. Very brave, my mum. In a quiet way.Bambi had Thumper. Hope you have support too.

[bookish in reply to wedgewood]

I think it is. I have it too, chest, jaw, neck, head (B12 problem, unidentified) and a neurologist told me that it would be due to my extensive family history of PA and B12D. My father has developed brown patches on the skin so I was doing some reading yesterday and found suggestion that cutaneous pigmentary disorders occur with B12D - darker patches seeming to be more common than vitiligo, but both happening ncbi.nlm.nih.gov/labs/pmc/a...

I also found a possible neuroendocrine theory heraldopenaccess.us/openacc...

and a mention of B12 as a potential treatment ncbi.nlm.nih.gov/labs/pmc/a...

Cheers