my thoughts and me

[Leigh6873]

something i wrote to family who think i exegarate the damage to me and there attitude is worse than any trauma i wrote this to tell them how i feel but to scared show them for fear of regection i feel so betrayed and hurt as they r nurses on nhs my parents dont understand and hoped they could unserstand and explain as parents think i dont care about anyone as the symtems are disabling and triggered agrophobia which i think how can i heal as they never visit me and iv tried explain but my mum said to me but u look ok to me lol proves lack of knowladge from there day to now ps iv had pernisous anemea since a child and thought my symtoms were my b12 but after councilling and blood tests showing it was from workplace harrastment for two years how can i ever recover iv my family who im normally close with desert me during worst and most lonliest period of my life .i understand but just want them read about it and see its real .xxx

[clivealive Forum Support]

Hi

It saddened me to read your poem and I'm sorry that you feel so alone and isolated from your family and those of the medical profession because they don't understand how you are feeling.

I was diagnosed with P.A. 45 years ago and for most of that time I never knew anyone else with it and neither nurses who gave my injections or GP ever asked me how I was coping.

My children could never understand why "Daddy couldn't do what other daddies did" and having been registered as disabled and sent to college in London to be retrained together with 100 other disabled persons the other 99 looked at me and said "What's wrong with you?" and later, colleagues at work questioned where I disappeared to at 10.30am every fourth Tuesday when I went for my B12 Injection.

However six years ago I joined the Pernicious Anaemia Society and discovered there were hundreds like me, that I was not alone and the same applies to you Leigh6873 with all the lovely people on here who are working together to dispel the ignorance held by so many.

I wish you well for the future.

[Raven321]

Your poem is soo touching! 😢It's beautiful.. stay strong. Blood doesn't always make you family, sometimes friends are all the family you need. Hang in there you are doing really well. It's just lack of knowledge and ignorance that makes people behave in this manner. I hope you feel better soon and just know that there are people in this forum who will always be there for you x

[spiffer]

Feel so sorry for you Leigh that you had to write such a touching poem. I am lucky in that respect as my family do understand and are sympathetic. Have you ever considered getting the stuff that has been written by the Pernicious Anaemia Society and giving to them to read. As for your poem, what have you got to lose by showing it to them. It might wake them up to your pain and what you are going through. If it does not help them understand, what will you lose. They already show no interest in you. If it were me I would show it them all. Best of luck mate and keep your chin up. RICK

[Leigh6873]

thankyou for all ur kind words its strangers who seem to be ur surogate family in these cases and yes iv bought the books bin libruary for anziety books they think i do it for attention not that i get it lol my poem which i wrote after a panik attack at my grandaughters party through them keep tellin me shut up like im 3years old and iv bin upset since i think they bring it on cas im try not do something irritate them im at the acas stage of investigation with work after three month with them thinkin im in a fantacy land .sometimez it would of bin easier to be beat up by staff that intimidated me for months at least in thers and in genarel peoples eyes iv u dont see it its not there .i have a passion for mental health issues tho before this which has helped me get to a initial diagnosis but its triggered agrophobia from work and family speak soon guys and girls lol thankyou xxx

[Leigh6873]

sorry about spelling xxx

[Hidden]

I know it's a different situation, but when I was newly widowed and joined a forum someone had written something along the lines of " please treat me like this". It explained how the person might not be crying outwardly but was constantly crying inside, life had lost all it's colour and purpose, please don't ignore me, don't think you have to try to fix me. I wish I had the original. It wasn't overlong but she showed it / gave each family member/ friends a copy. It was much better written than I make it sound and I think something written by you ( you're obviously able to write expressively) might help your family circle understand how you feel.

All the symptoms of PA aren't visible. If we each had arm hanging off others would see the difficulties straight away. But our symptoms are hidden within us and if you're anything like me, change and vary each week.

You're not alone, we understand the huge mountains we all climb and I hope your family come to see this too.