Ghost: for those who feel invisible

[Cherylclaire]

This is an eggshell mosaic on slate called Ghost.

It depicts the weird trickling sensation just under your skin with the delightful name of formication: to me, this felt like a physical depletion of self, trickling down to my fingertips and soles of my feet- always started when exhausted (a supermarket trip would guarantee an onset) and always ended with a long nap.

The background contains fragments of records, charts, discarded phials.

I called it Ghost -because sometimes at my worst I felt that I was losing not only my job, but my entire personality was disappearing inside a mass of symptoms: mood-swings, anxiety, irritation, anger, impatience, indecision, memory loss, cognitive issues, sensory overload

I called it Ghost -because I distanced myself and lost touch with people I care about: craving solitude, exhaustion, inability to source required energy

I called it Ghost -because medical professionals weren't listening or looking or understanding what they were witnessing: poor training = lack of recognition of the range and severity of B12 deficiency symptoms = misdiagnosis, undertreatment, assumption that post-menopausal women need anti-depressants

This is for any of you who are struggling to get beyond a surgery receptionist on the phone, are starting to believe that maybe it is all in your head, are not well enough for yoga, are not getting anywhere with B12 tablets, and who are feeling guilty about any of this.

This is who I was, who I became.

Now I'm back, I plan to keep it that way.

For me, that means a constant guard against returning symptoms and frequent self-injection. We are all different and that should be recognised- and celebrated.

[wedgewood]

You have described those feelings that neglected P.A. patients suffer from in an amazingly succinct and descriptive way . So very well expressed . Your art underlines those emotions. Thank you Cherylclaire.

[Cherylclaire Forum Support in reply to wedgewood]

...and especially to those with "just" B12 deficiency !

[Cherylclaire Forum Support in reply to wedgewood]

Missed you and glad you're back.

[Pixielula in reply to wedgewood]

Cheylclair sorry to hijack your lovely picture and post…….. Wedgewood it was you who saved me from becoming a ghost! I was at the point of no longer being able to drive and work, I had exhausted the medical route for more injections, and you were the one who started me down the self injection road… you gave me back my health and my life and I am so grateful to you. It is lovely to see you back I have missed your post.

[Cherylclaire Forum Support in reply to Pixielula]

No worries- relief to see Wedgewood is back.

[Bonjourtristesse]

That’s very good. It can feel like being a ghost, I agree. As if people look right through you when you try and tell them you can’t function or have no energy or are losing feeling in limbs. Doctors as well when you hope they might finally be the one to see you clearly. And the disappointment when they are not.

I wonder about all the people who are slowly becoming ghosts who could be saved.

[Cherylclaire Forum Support in reply to Bonjourtristesse]

Hit a nerve with you.I remember all those appointments- afterwards, having to let go of another thread of hope.

[Sleepybunny]

Very poignant Cherylclaire...I can relate to what you have said.

I sometimes say in posts that I lost over 15 years of my life to untreated B12 deficiency

[Cherylclaire Forum Support in reply to Sleepybunny]

Yes, you do. But without you, I probably wouldn't be here doing this. You are making up for lost time, that's for sure.

[deniseinmilden]

Wonderful! Thank you!

It's so good to feel understood from the inside out. Wow, you are so talented! What a good job you didn't fade away.

[Cherylclaire Forum Support in reply to deniseinmilden]

You helped me - probably more than you know.

[Mrsmr]

Very powerful music and words Cherriclair. 🙏✍

[Mrsmr in reply to Mrsmr]

I meant to say mosaic ,sorry cherryclaire. It just reflected how I have felt.thank you

[Cherylclaire Forum Support in reply to Mrsmr]

- All music to my ears ! Here to make a difference.

[Cherylclaire Forum Support]

Do it. I'm starting to think that people respond more these days to the visual - maybe we should make more of that. How else to make the medical profession see what it feels like to be us ? it's not hair loss, difficulty walking, burning tongue, sensory overload etc as separate issues needing various consultants and taking more money and more years out of your life.

It's all of that, and more -and it's life-changing.

[Nackapan]

Oh my. That takes guts depicting just how it gets with this illness.

Yes

'Ghosts' of our 'old self'

That painting has so much strength too.

Like you have .

Inner strength that has got you through to where you are .

Never stop painting.

Says more thsn words ever can.

Thank you

[Cherylclaire Forum Support in reply to Nackapan]

Easier to have guts retrospectively !

[Nackapan in reply to Cherylclaire]

Yes maybe.Still difficult to look back and reveal what went on though I think .

Revisiting I think can be painful..

Anyway I think it's a great piece of art and very glad you've shared it.

[Cherylclaire Forum Support in reply to Nackapan]

Thanks, Nackapan - looking back helps you to acknowledge how far you have come- and recognise any signs of regression. And of course, still looking for a pattern- more from habit now, I think.

[Ratherbewalking]

Amazing. Thank you so much, Cheryl. Xo

[Cherylclaire Forum Support in reply to Ratherbewalking]

Thanks Ratherbewalking -my pleasure. x

[Sammyo23]

Thank you. This made me feel less alone.

I always prided myself on my creative and intelligent mind and day by day, I'd gradually watch myself get slower, forget things that used to be instantly and easily recalled.

Years of encyclopedic knowledge just vanished. I'd have to relearn and rediscover things I knew by heart.

And the frustration of simple things being difficult or impossible now.

[Cherylclaire Forum Support in reply to Sammyo23]

It took a lot of frequent self injecting to make any difference to me, which alarmed consultants to the extent that some were completely distracted from the cause.It worried me that I could be wrong too, but in the absence of alternatives........

Why on Earth would anyone inject their thigh with a 30 mm needle every other day ?

That is the question they should be asking.

Once I saw a change, I had to use that minor difference to get me through to the next one. It has taken years to get to this stage.

I have to thank my bright stubborn GP - and this forum.

Without both, I would still be that woman in the picture.

[Sammyo23 in reply to Cherylclaire]

It's true. When you're driven to the edge like this, you see there's no other choice.

It's not fun sticking yourself with a needle over and over again. But what else can you do? The doctors can't help, or if they do, it's not enough.

I'm very happy for anyone who gets a doctor who was able to figure out what was wrong with them and provide adequate care.

That wasn't my situation.

The people in your life don't understand.

You go from being the captain of your ship, the director of your life, to just being a passive participant.

And there's the constant worry. And so many symptoms.

I would have loved more than anything for someone to have been there to tell me it's going to be okay and for them to have a solution that helps.

[Cherylclaire Forum Support in reply to Sammyo23]

Or for a start, just to have all those symptoms accepted as part of the same thing.It strikes me as odd that very familiar and highly specific B12 deficiency symptoms, listed on websites such as the Pernicious Anaemia Society, remain completely unknown to GPs. Deaf to so many indicators all screaming the same thing.

[Parlay]

Your mosaic and words speak volumes and epitomises how we all feel thank you

[Polaris]

Wonderful ! A big THANK YOU Cherylclaire 💐for expressing what many of us have found impossible - not least because, for some of us, awareness and finding the right words suffer too - with progress and setbacks still a problem when overdoing or under stress.

I paint but motivation is an issue.....

[Cherylclaire Forum Support in reply to Polaris]

I hope this has motivated you, Polaris .We need to put together a collection of work, show what it feels like to be us, because they just don't get it, do they ?

[Polaris in reply to Cherylclaire]

It certainly has and I'll make a start 🎨 Have no excuse - so much inspiration around and am so grateful that I've been luckier than most in that it has not stopped me walking.

[Cherylclaire Forum Support in reply to Polaris]

I feel the same, Polaris . Even when not sure where I was going, I could still get there !

[Litatamon]

I just woke up in the middle of the night feeling so sore and exhausted because I have to trudge on through a move. This is despite having a four to five hour 'nap' yesterday. The kind where your eyes close and that's that, no control. Like someone is injecting you. A four hour nap and still in no shape to finish up. But finishing up has no reprieve. The irony is I have spent most of my life having no ability to ever fall asleep upright, now it is miraculous to actually stay awake upright.

My mind was so low thinking when did this all happen, how did this happen and when is it going to end. That a move is like a personal marathon of the ages, physically and mentally. And then if you do accomplish some great feat due to sheer will my head goes to people thinking "She's sick?" "And doing that?" Not that I have the inner strength beyond compare. That we all do.

Your artwork - and description - soothed everything Cherylclaire. I am going back to sleep remembering all the positive changes that have come my way - both big and small - including the ability to actually write this post without multiple errors unseen by an eye that used to be an editing queen. I am now remembering a miraculous changing of the guard for me and an intense gratitude for this forum and site.

And for you Cherylclaire. All your support, insight and now your talent shared.

[Cherylclaire Forum Support in reply to Litatamon]

It is a long journey out.We all need each other to get there.

I was a Master Carpenter once upon a lifetime.

[Narwhal10]

It’s a brilliant paced of art.

No words just 😢 - because you have portrayed and described it so eloquently and it resonates with so many of us including myself.

Thank you

[Cherylclaire Forum Support in reply to Narwhal10]

Thank you for that, Narwhal10

[Narwhal10 in reply to Cherylclaire]

I meant ‘piece of art’ but the tears were flowing.

[Cherylclaire Forum Support in reply to Narwhal10]

I understood you. So glad you also understood me.Take good care.

[scnuke]

I think most all of us can see a piece of ourselves in this. Great artwork.

[Cherylclaire Forum Support in reply to scnuke]

Thanks, scnuke .

[Ghound]

Wonderful piece of work, you're so talented !👍

[Cherylclaire Forum Support in reply to Ghound]

Thanks, Ghound - I liked how my symptom records turned into landscape: high-rise flats in the background. Quite appropriate for a city-dweller. Unplanned bonus !

[Ghound]

Very clever ! The more I look at it the more I get out of it - a result all good art achieves. Thanks for sharing it with us

[Cherylclaire Forum Support in reply to Ghound]

I photocopied a load of test results, my records etc - intending to wallpaper the background first and just found it too "in your face" so tore them all off. Too factual, not personal enough.Liked the remnants better. Do you/ did you draw/ paint ?

Can you show what you are going through in any way ?

It is quite a useful part of healing for some.

Easier than trying to find the words when letters are good, but tripping over each other. Either takes forever- or risk not being understood. Fingers slower than brain (?)

[Ghound]

Funny you should ask, but I did do higher art at school and was torn between art college and nursing. Decided that although I could draw fairly well , I just wasn't original or creative enough to make art my career and went into nursing instead. Have recently retired so perhaps I may pick up art again ? Have really enjoyed seeing your work !

[Cherylclaire Forum Support in reply to Ghound]

Do pick it up again. I'd love to think I'd motivated you !

[Ghound in reply to Cherylclaire]

Thank you ! And perhaps you have ! 👍😀 xx