Poppy - The Road to Recovery!

[member_37074]

Hi Sandy

Sorry I've been laid low and miserable. Better from infection, but still not bouncing!

Saw GP today who told me Lancaster doctor wants to bring me off the hydrocortisone and run synacthen test AGAIN even she said what does he hope to prove other than the quickest way to get me into A & E. She will not let him do it to me thank heavens.

See Dr Howell at Preston on Friday so hopefully he will have some ideas that are less frightening, I am very lucky to have someone from the foundation to accompany me to help with the questions and remembering the answers.

Don't know if I have told you this I am going to a retreat for Christmas. A normal christmas is just agony for me without my boys, the last two i have been in a psychiatric hospital, and sadly last Christmas day I nearly committed suicide so we can't have a repeat of that.
To be honest my family just don't cope well with me and who can blame them? They are just hugely relieved i have made plans of my own and I will be safe in the company of nuns and scrabble! 3 nights at Christmas all meals for £111 country house retreat no tvs, just trees sheep and lots of log fires. the nuns are happy for people to take as much or as little from the experience as you wish, they will check i am ok each day but not demand my attention otherwise.
It has forced me to tell my ex just how terrible life is for me without Matthew. I don't think amazingly he had realised quite how bad i was about it, though you would think 5 suicide attempts might have made him realise my life was bad, typical him never thought to ask.

i have waffled again.

love poppy xx

[member_37074]

I have had my appointment at Preston.

Well, what a pleasant experience that was for a change. We got there in plenty of time and there was a disabled parking space empty for us right outside the door.

It was a lovely new clinic purpose built someone to welcome you, show you to the waiting area which was spacious and airy and free tea and coffee.

We did not wait long, met the lady from the Pituitary Foundation ok and went into see the Dr. At first i was a bit disappointed as it was not Dr Howell himself, but the Dr we saw was very nice and listened very carefully to me and wrote things down. He was shocked by the weight gain and took it seriously, as he did all my other symptoms and asked lots of questions.

the Lancaster team had not sent him the results he needed so he is going to write off for those. He ordered about 12 blood tests and said it would not be necessary to put me through the synacthen test again as it was so conclusive last time that i needed the hydrocortisone. he said not to let anyone take me off it again or i would be very ill.

he asked if i had a medic alert bracelet and even checked the wording on it was correct and said i needed to carry the emergency hydrocortisone with me as if you are to vomit you only have an hour to get an emergency dose down you and if it doesn't stay down you need to inject. No one had told me that.

He could not really give any answers until he gets the tests results, he will see me in 6 weeks , that is Christmas so it is the 6th January. But i felt listened to and that he was going to do all he could to resolve things, and prevent any further hospital admissions.
He also took seriously the cognitive problems i have which are a real issue. When we took on the direct payments it was with the idea that I would take over the running from Dad, but there is no way I am up to it at the moment.

We think anyway next week we are going to have to let Megan go, she is taking advantage and is not taking the commitment of the job seriously and it is getting me down. If I just used Carewatch I would just have to write a cheque once a month. But I am even getting in a mess planning carewatch the girl rang up this morning and said i was forgetful in a nice way and said she had better deal with Mum.

I think i have remembered everything if i think of anything else I will let you know.

Enjoy your weekend

poppy xx

[Sandy]

Hi again Poppy!
So, so good to hear that you've foudn a professional, caring, thorough expert to take control of these problems, at last it's what you deserve - someone you & your GP can trust to do the best for you

How's your general health? Are the meds helping now? And is there any benefit with your weight yet, as you get more mobiile &tc? And how is your mood?
Have you been watching the Food Doctor on C4? It's intersting, I wonder if there's any guidance for us hormonal lot about what can help us??

Ref Megan - it would've been so great if it had worked out perfectly with her, esp with her being so close to you. but, if she's not earning her money & fulfilling all your needs, then it's not fair on you to keep her on. I hope you can finish the professional relationship in an amicable way, so you can see her in a friendly way when you bump into each other. And you're right, you've got to manage your money in a way that works for you, there's never enough of it to go around so look after yourself as much as you can with it.

Are you still going to hydro on Sundays? I hope so, it seems to do so much for you.

The retreat sounds an excellent idea for Christmas, strange tho it may sound, I'm slighly jealous I must admit!
Ref your ex - Isn't it amazing that some men don't realise stuff that's right under their noses, for years and year.... I sometimes feel I need a big neon sign to point stuff out to mine. Perhaps he'll be a bit more understanding in future.

I hope the views are lovely out of your window in this gorgeous autumn weather, you did the right thing staying in that flat!
Love & hugs
Sx

[member_37074]

Hi
lots of questions i won;t remember to answer them all.

Megan and i have parted company on amicable terms my social worker told me to tell her they said i had to start managing my own care taking it off my parents and that the agency was the only way as i just had a cheque to write once a month. Also if i cancel with reasonable notice i don;t have to pay them. I think we parted friends she has so many other jobs i don't think she had time for my needs really.

MH has been a bit of a downer i got a kidney infection 3 weeks ago and i had to double my steroids and stay in bed for a few days that few days turned into 3 weeks going no where doing nothing. Mum realised last week and made me tell my cpn so i cried on her for an hour and she says routine is the answer so from this week i am trying to write down something for everyday, Carers have been making me get up showered and dressed by 9,30 and i have to stay out of bed as much as i can, it has been hard work.

Carer took me on 2 hour trip to town yesterday i was exhausted and i have been to a friends today did sleep when i got back today.

I have been working hard at physio and hydro and my mobility is much improved also seeing a chiropractor for my bad back, I am down to no sticks inthe house and one when out.

I am having to be brave at the weekend on Sunday i had booked to go to Salford quays premier inn for £29 with a friend, now she has a hospital appt on the monday so can't come so i am going on my own. I am going to the lowry on Monday, i have booked a scooter and another one booked at the shopping mall. \it is only really a 24 hour trip but in a strange way i will find it easier than going out here, one of my fears is bumping into people I knew when i was size 10/12 and them seeing me now they feel able to comment how fat i have got etc and i can't cope with it.

A few people i know are envious of my christmas retreat some can't understand it either.
matthew estranged son had interview at Oxford uni from 11-14 Dec.

George is going on football tour to Australia in 2013 after his GCSEs, so we are saving already he is the team;s star player!

Hope you are ok.

love poppy xx