Condition update

[Livelovelife56]

So with my son's upcoming 6 month appointment and where he will begin transition to adult services my anxiety has increased. So my morning messages were part of my self care to remind me that it's not always as bad as I think. And I wanted to share this with a group who has always been so supportive and informative in helping me understand his conditions and aspects which didn't even occur to me as potentially being a problem, (his BP, the two conditions impact on each other)

I will no longer post any good morning messages as I have been informed this is against the rules. 😳

[Milkfairy Heart Star]

Hello,

Are you aware of the Sommerville Foundation?

It's a charity dedicated to supporting young people and adults born with heart problems.

They maybe able to help support your son and yourself further.

sfhearts.org.uk/

They have a Facebook group and this maybe a place where you can continue to have an avenue to self-care.

[BeKind28-]

Hello

I am so sorry that your good morning posts have been reported and you now can no longer post them as I am sure they cheered others up who were having a bad day

I did not reply but they cheered me up as I feel I am struggling to

Also I can see why you were doing them like a kind of therapy to help you through a difficult time where you are feeling overwhelmed with your Sons condition and the transition he has now got to make to adult services this is a big step when the care he has been having has been so good but I am sure they will take just as good care in this next phase even though I am so sorry it is causing you such anxiety

I knew something was wrong as you were posting more than you normally do but as you have been told it is against the rules to say good morning and hopefully get some responses to help you then post how you are feeling , your struggles , your anxieties just use a different title on your post but keep talking as talking can be a huge help when times feel hard as they do for you at the moment

I wish you a lovely afternoon and hope you have had a good Morning to x

[Furryears in reply to BeKind28-]

Hi BeKind28- just wanted to take the time to say, you have such a lovely way with words, I hope you are keeping well and being kind to yourself.

[BeKind28- in reply to Furryears]

Hello

That is very kind of you to say

I am not doing well at all at the moment and why I could relate so much to this lady who is struggling at the moment with the anxiety due to her lovely Son and how saying Good Morning was helping her which is so sad to see she can no longer do

We all reach out for help in different ways some cannot reach out at all so when someone finds a way to do so with a simple good morning I just drew on my own struggles and replied

I hope in some way she will keep coming and posting and I hope you are keeping well to x

[Fanfab1]

I hope the transition from children’s to adults is a smooth one. ❤️

[Come2jesus]

don’t go against the narrative you might give people hope who don’t fully subscribe to the narrative. All the best lovely lady and for your son.

[Carercmb]

don’t disappear your helping others.

Keep us updated as it will help all of us.

[Larneybuds]

Very sad that a cheery good morning has been banned and even more sad that it was reported. I hope everything goes well with adult services and that you will also feel more at ease with everything. All the best xx

[Bingo88]

Good morning Livelovelife56. Who on earth has said that you can't post anymore Morning posts. It isn't April 1st yet. I looked forward to your morning posts. Although I never responded I always thought how lovely it was to see this every morning. If someone has complained about your morning posts I suggest they just shut up and scroll on by and live in your sad little world. What are things coming to when we give way to the minority all the time. I think we all deserve a vote on whether you're Good morning posts should stay or be stopped. Hope you have a wonderful day today. I think we all deserve an explanation please. Brian

[Shabana1974]

Hi onr thing I quickly learnt was as my son was going to turn 18 the professionals would no longer talk to me 🙃. So my I wrote a letter on behalf of my son and he signed it. An gave it to everyone involved in his care to put on file that they have permission to talk to me. (My son has severe social Anxiety) so he won't talk to them himself.

That's the best advice I can offer

Best wishes

Shabana

[Livelovelife56 in reply to Shabana1974]

Thank you. My son is Autistic so we have a hospital passport in place for him and his consultant from GOSH has put us in touch with learning disability nurse

[Shabana1974 in reply to Livelovelife56]

Oh that's so good to hear. My Son was 1 week before his 18th before is High Fuctioning Autism was diagnosed so unfortunately we have been offered no help whatsoever. 🙃 just told to self refer. But no one will except a referral from me. And he's not in a place where he can self refer he's now 24 and very rarely leaves the house. He I would put a guesstimate goes out 4 times a year

[Livelovelife56 in reply to Shabana1974]

Oh no thats so sad to hearHave you got a hospital passport for him ? You should contact the hospital he attends disability team to get some support

[Shabana1974 in reply to Livelovelife56]

Unfortunately he was diagnosed by community based camhs so no hospital involvement. Its basically they abandoned us to the world