Support Group

[aejdude]

Tom has to wear this, for the whole time he is asleep. Tonight

Then, he will be going to the hospital tomorrow. For a couple of hours of respiratory tests. To see how much he’s lung function has worsened. Since the last time he had them done. We will also get the results of, the stats thing he has to wera later. tomorrow while, we are there.

I really hate these appointments, I’m so nervous. As he has got worse with his DMD on the outside. He can do less and less each week.

Its soooo devastating, to watch him get worse. He’s also finding it very difficult to the constant change of his condition. Which I'm finding hard, to see him. Struggling.

I and his respiratory nurse were chatting, this morning about when and what will happen. When he gets worse an needs a ventalator etc... and also when he moves into the adult services, in the next few months to a year.

The main issues I have is, if a when Tom needs admitting to hospital, Where do I stay. Even thou Tom is an adult soon. He still needs 24 care. Like when he was in the Children’s hospital, I can stay. But in an adult hospital there isn't anything like this.

They are trying to educate, the nurses and other staff. That I need to stay etc… As he will so not be able to get the care. He needs. As there is never going to be enough. Staff for one to one care.

Thats one of the number of things. That many of us parents dread is. The big move!!!

Tom should be given the best care and that is probably in America. So someone needs to donate money to you to get him to a hospital in America. Can't they find you a place to stay?

[beachbabe]

Im sorry i just to need to vent this off and i just need someone to talk to. Today was the end of term, 2 week break from school. The rough draft of biology, chemistry coursework was due today preferably. However psychology A level coursework was due today, i missed the deadline. It wasnt the offical deadline made by the board but an offical deadline for the teacher atleast mark it during the holidays and give it back to us. I was just finishing bits and bobs of today at the last minute, and i was so annoyed because i couldn print mine of as the libarian was not here during that time, and we have to pay to print. The deadline for psychology was 2pm today, i was working really hard, and then i went to my teachers room she wasnt there, waited for 2 mins, and then decided to go home and maybe email the coursework

Today i go home, and recieve a phonecall from my teacher she wanted to talk to my parents but they were not at home. She expressed her anger with me saying i didnt meet the deadline, she was very disappoined and i should of had the decency to wait and explain to her in person why i couldnt hand in the coursework. And she actually told me she is giving me 0 for this module coursework and may withdraw me from the course. Thats when i just froze, it was so unexpected.

It had been such a good term for me, handing in all my homeworks on time, getting mostly A and B grades for my homework. Even the teacher was impressed with my psychology coursework (the rough drafts) i was sure to get a B or A.My teacher was pleased with my January exam results. And now its such a change here she is venting of her anger, it was so strange since she isnt a strict teacher and i never heard her so angry. I just dont know what to do i acknowledge what i did wrong, i should of waited however long it took to get my coursework to her, but thats how life is isnt it? people learn from their mistakes, i have learnt a lesson now and this is NOT going to happen for my biology and chemistry coursework

How can i change my teachers mind, and express my regrets and say i am sorry. Since she can mark it as its not the deadline set by the board do i still have hope? Please give me advice as i have no one to talk about this too

Thank you for listening.

[Cerise]

I am aware that there are way more important issues concerning other members of this board. Therefore mine will seem rather insignificant. I feel as though I am finally able to post about it now though.

I'm gay. And I came out to the majority of people when I was 17. I'm now 18, but even though I'm out I still feel as though it's hidden most of the time. I understand it isn't the most important thing about me, but I sometimes feel as though it's not worth mentioning. Most of the time I have no problem whatsoever talking or thinking about it. But sometimes, in the past couple of months. I haven't wanted to mention it, think about it and feel ashamed about it.

I know I shouldn't feel ashamed about it, but sometimes I do. I tried talking to a 'friend' about it, and all she basically said was that I had nothing to be ashamed about then blabbed on about how it isn't easy being straight either. She was not a help at all.

She's wrong. It is easier, I'm not saying that it's a breeze but at least you don't feel ashamed about your sexual orientation and you didn't have to come out! (this is besides the point….)

My point is, am I ever going to feel 100% comfortable with who I am?

When you learn to accept it others will and you'll feel comfortable with who you are. We are often influenced by our insecurities about what people think about us, thus makes us insecure about ourselves. If you want to PM about me to talk about it... feel free, I listen and don't judge, plus I know how you feel.

[Di]

Thanks for the support.

Tom had some good news, from the test’s he had last night and this morning.

Despite, his DMD getting worse, his lung function is not too bad...

Hopefully we don’t need to be talking about him needing a ventilator at night just yet… Thank god!!

As long as the tests, he will be having, in a couple of weeks say. He will be either at home or he might have to go in over night depending, on what his respiratory nurse says. He will be ok.

Unless he has any problems with his chest, in the meantime. He will see Tom in a yrs time.

He is now 5ft 5 inch yay.

He will be staying on at the Children’s Hospital, for at least the next couple of years. Maybe more!!? As they still a long way off. In getting a team of specialists. At the adult hospital for the DMD lads.

His respiratory Doctor, say’s he will not sign the DMD lads over to the Adult services. Until he is satisfied they will be well cared for. So he has to write a letter. Saying if Tom needs to go into Hospital. He will be going to the Children’s, not the adult hospital.

Unless he needs an ICU/IDU bed. He will go to the adult Hospital, until a bed is free for him. At the children’s.

[aejdude]

Im sorry i just to need to vent this off and i just need someone to talk to. Today was the end of term, 2 week break from school. The rough draft of biology, chemistry coursework was due today preferably. However psychology A level coursework was due today, i missed the deadline. It wasnt the offical deadline made by the board but an offical deadline for the teacher atleast mark it during the holidays and give it back to us. I was just finishing bits and bobs of today at the last minute, and i was so annoyed because i couldn print mine of as the libarian was not here during that time, and we have to pay to print. The deadline for psychology was 2pm today, i was working really hard, and then i went to my teachers room she wasnt there, waited for 2 mins, and then decided to go home and maybe email the coursework

Today i go home, and recieve a phonecall from my teacher she wanted to talk to my parents but they were not at home. She expressed her anger with me saying i didnt meet the deadline, she was very disappoined and i should of had the decency to wait and explain to her in person why i couldnt hand in the coursework. And she actually told me she is giving me 0 for this module coursework and may withdraw me from the course. Thats when i just froze, it was so unexpected.

It had been such a good term for me, handing in all my homeworks on time, getting mostly A and B grades for my homework. Even the teacher was impressed with my psychology coursework (the rough drafts) i was sure to get a B or A.My teacher was pleased with my January exam results. And now its such a change here she is venting of her anger, it was so strange since she isnt a strict teacher and i never heard her so angry. I just dont know what to do i acknowledge what i did wrong, i should of waited however long it took to get my coursework to her, but thats how life is isnt it? people learn from their mistakes, i have learnt a lesson now and this is NOT going to happen for my biology and chemistry coursework

How can i change my teachers mind, and express my regrets and say i am sorry. Since she can mark it as its not the deadline set by the board do i still have hope? Please give me advice as i have no one to talk about this too

Thank you for listening.

Well it worked in your favour that your parents weren't home, she shouldn't just give you a 0 she should be fairer than that i mean you put all that effort into it.

Just explain to her you've been busy which sounds like you have and hope she understands that's all you can do really.

[yannick]

I am aware that there are way more important issues concerning other members of this board. Therefore mine will seem rather insignificant. I feel as though I am finally able to post about it now though.

I’m gay. And I came out to the majority of people when I was 17. I’m now 18, but even though I’m out I still feel as though it’s hidden most of the time. I understand it isn’t the most important thing about me, but I sometimes feel as though it’s not worth mentioning. Most of the time I have no problem whatsoever talking or thinking about it. But sometimes, in the past couple of months. I haven’t wanted to mention it, think about it and feel ashamed about it.

I know I shouldn’t feel ashamed about it, but sometimes I do. I tried talking to a ‘friend’ about it, and all she basically said was that I had nothing to be ashamed about then blabbed on about how it isn’t easy being straight either. She was not a help at all.

She’s wrong. It is easier, I’m not saying that it’s a breeze but at least you don’t feel ashamed about your sexual orientation and you didn’t have to come out! (this is besides the point….)

My point is, am I ever going to feel 100% comfortable with who I am?

One day you'll feel 100% comfortable, but you need to give it time. People are still raised with the idea of having a partner of the other sex, and when it is different for you, you're in for a bumpy ride. There will always be people who won't/don't want to understand, and even when everyone around you is fine with it, it's never easy.

I came out to a small group of people about a year ago, and none of them had a problem with it, but yet I have a problem with it from time to time. Eventhough I know for years I'm gay, I still haven't accepted it for 100%. But I try not to worry about it, I just look at it look a big process. And for me coming out isn't the last stage, don't get me wrong, it's the most important stage, but I don't think it's the end of the acceptance-process.

Try not to worry too much, because it only makes things more complicated. And give it time

[Megina]

Wasn´t sure if I should write this in here or not but I need to get it out!

I have as I mentioned had a couple of relapses lately... And earlier today I ate some candy (more than I should have lets just put it that way) and I got an intense need to get it out.. it has never been that horrible or that strong and as I could not get it out in the house I went to the woods 5 minutes away from my house.. I have never done that.. never been that desperate and it scared the hell out of me...

Afterwards I went for a long walk and as I was walking on a place where the old railroad used to be I kept looking down the hillside (it is pretty steep with rocks on one side of the road there) and all I could picture was letting myself fall down :S

[rising-flame]

Please don't make that picture a reality. It sounds like you had a moment of weakness, but you mustn't let that pull you down. It sounds like you've had success with beating this in the past. As odd as it sounds, sometimes we have to let the defences down to be able to rebuild them stronger. The long walk after will have done you good. Is it worth you going to see a professional? or have you been down that road before and found it no good?

[Megina]

I have not seen a psychaetrist, but a nurse.. but I found it to make me worse as I got so fed up with her "you are such a great girl and why do you do this" when she does not know me at all :s

I have had sort of suicidal thoughts sometimes ever since elementary school (5th-6th grade)...

So that is nothing new, but I have only had the thought before.. I have never "viewed" myself actually doing it..

[Eli]

Get help. I'm not gonna pretend I know a lot about this or have a lot of great advice, but the way I see it it's generally one good advice when it comes to these things: get help.

I hope things work out for you!