What Is Your Illness Or Who Ever You Care For

fryster2006

Hi all,

I am dad/carer for my darling daughter Chloe who is 2, she was born with a major heart defect pulmonary atresia with tetralogy of falllot, she had to have a bt shunt when she was born and had major surgery a few months ago. We nearly lost her, but she managed to pull through and is now doing great! Chloe was diagnosed with a rare chromosome disorder in October last year, 4q deletion and duplication. This is why she was born with the heart condition. She has problems feeding and has a nasal tube at present, we are on waiting list to have a peg put in her stomach sometime this month or next month. She can't crawl, roll on her front or sit unaided, she has a temporary special seat and is going for a fitting for her own seat next month.

I am so proud of her, she has been through so much and makes my wife and I very proud!

We also have a boy Nathan, 8, who has downsyndrome. He has a tiny vsd of the heart which doesn't require any help/surgery. He had a bowel op a few years ago. He's doing really well, and also makes us really proud!

We have 6 children altogether!

lolababy

Hi Fryster you have your work cut out ,but, I bet your children are worth their weight in gold.

brians_daughter

i am pants at speeling whats up with me lol..

I have severe rhumatiod arthiritis, fybronaralgia, and the bottom 3 vertibrate in my back are fused. All at the grand old age of 32! I am currently off work ill,a nd have been isnce April time. It has been suggested to me i start to claim DLA, but i have heard so many horror stories i doubt i will as stress makes me worse..

I am on methotrexate to supress my immune sytstem so my body does not make my bones worse (a chemo based drug) every pain killer i can think of anti-inflamatoris, tramadol, tramadol slow release, co codamol the list goes on and on

lellie

I have [treatment resistant, rapid cycling] Bipolar Disorder.

I mainly struggle with severe depression and mixed states and have been off work for over a year.

elfen

yorkiegal - you're the first person I've ever seen to have the same as me. I'm not on my own then.

I have Borderline Personality Disorder with Psychosis. I also have a generalised anxiety disorder. Right now, I'm sat at the top of the house, writing this, when I could be at a BBQ with the OH, but I couldn't go cos I was too scared of the people. Sums up my life. I can barely do anything in a crowd as I get scared or freak out, I won't be left alone with men I don't know or I can be extremely aggressive, I find it hard to engage with healthcare professionals about what's wrong so I don't get a lot of help. I'm on anti depressants and anti psychotics (Reboxetine and Quetiapine) and think the quetiapine may need to be upped again as many of the problems being caused are returning. I'm afraid of nearly everything, I get angry and aggressive quickly but my mood flips in minutes. I become obsessive (mainly over films) and routines (I have to have a strict routine) and become anxious if this cannot be met. If any changes are going to happen, I have to have at least a week's notice so I can adjust but on the day I'm still anxious.

I have a disordered eating pattern (I'm more an EDNOS, but trying to recover) I struggle to fight self harm urges, and wanting ot take my own life. I hear voices, both in and out, and cannot always decipher reality from fiction. I have hallucinations, and extremely vivid mightmares, which do spill over into daily life. I find it hard to be around noisy people (screaming teenagers and toddlers are the worst; it takes everything in me to not go over and smack the life out of them) I find it hard to be around many people. I can't go to new places alone as if I get lost or end up in a confrontation I am not able to be held responsible for my actions. I have panic attacks, am currently in a depressive state and I fight the urge to kill myself. I don't know how I'm going to cope at uni, but I want to try, I'm trying to not let this stop me.

I hate it how when people see a physical sign of an illness or hear you have a mental health problem that you're automatically a thicko and cannot understand basic sentences. I want to go to uni and get a job in the area I love (media, film and TV) as I WANT to prove that BPD does not stop you living the life you want, it just inhibits you.

LadyMorticia

elfen wrote: »

yorkiegal - you're the first person I've ever seen to have the same as me. I'm not on my own then.

I have Borderline Personality Disorder with Psychosis. I also have a generalised anxiety disorder. Right now, I'm sat at the top of the house, writing this, when I could be at a BBQ with the OH, but I couldn't go cos I was too scared of the people. Sums up my life. I can barely do anything in a crowd as I get scared or freak out, I won't be left alone with men I don't know or I can be extremely aggressive, I find it hard to engage with healthcare professionals about what's wrong so I don't get a lot of help. I'm on anti depressants and anti psychotics (Reboxetine and Quetiapine) and think the quetiapine may need to be upped again as many of the problems being caused are returning. I'm afraid of nearly everything, I get angry and aggressive quickly but my mood flips in minutes. I become obsessive (mainly over films) and routines (I have to have a strict routine) and become anxious if this cannot be met. If any changes are going to happen, I have to have at least a week's notice so I can adjust but on the day I'm still anxious.

I have a disordered eating pattern (I'm more an EDNOS, but trying to recover) I struggle to fight self harm urges, and wanting ot take my own life. I hear voices, both in and out, and cannot always decipher reality from fiction. I have hallucinations, and extremely vivid mightmares, which do spill over into daily life. I find it hard to be around noisy people (screaming teenagers and toddlers are the worst; it takes everything in me to not go over and smack the life out of them) I find it hard to be around many people. I can't go to new places alone as if I get lost or end up in a confrontation I am not able to be held responsible for my actions. I have panic attacks, am currently in a depressive state and I fight the urge to kill myself. I don't know how I'm going to cope at uni, but I want to try, I'm trying to not let this stop me.

I hate it how when people see a physical sign of an illness or hear you have a mental health problem that you're automatically a thicko and cannot understand basic sentences. I want to go to uni and get a job in the area I love (media, film and TV) as I WANT to prove that BPD does not stop you living the life you want, it just inhibits you.

Are you my twin? :eek:

joyciebird

My 4 year old daughter is Autistic and sleeps for only 3 hours a night, we have no respite or help because we dont want it. She is our life and wouldn't change her for a minute

Breast_Cancer_Survivor

Ive had Breast Cancer twice, at 24 & 33 and following 5 attempts at reconstructive surgery im now disfigured.

Consequently ive suffered from disabilating depression & anxiety on & off for the last 12 years.

I was also diagnosed with Asperger's Syndrome in 2006 following my eldest son's diagnosis.

My youngest son has ASD & Dyspraxia with suspected ADHD.

It's mad in our house & extremely stressful at times but I wouldn't change my kids for the world.

I also firmly believe that what doesn't kill you makes you stronger so I don't feel sorry for myself...although when the depression is at it's worse I do sometimes wish I hadn't survived.

I know there are people out there with alot more on their plates & I take my hat off to them for coping with everything life has thrown at them.

Goodluck & best wishes to you all.

Vicki x

LilacPixie

Umm not really sure. I do have a blood disorder that when un diagnosed caused damage to my central nervous systme and left me with permenant nerve damage. Lack of sensation and feeling is getting worse but bloods are stable so I am waiting on an MRI and possible lumbar puncture as my consultant now suspects a neurological problem. My mobility is getting worse overall although some days are better than others I go out less and less basically because i can't manage alone and generally my quality of life is eeping away. I pretend I am fine but i'm really not

I,_Geek

ladybelle wrote: »

Agoraphobia for 22 years
Anxiety
Depression
Panic Attacks

Cant go any distance alone, cant go any distance full stop really, but cant go out alone without someone with me for support. Can only get to local shop around my corner from my house where I can now work for a few hours a week but not without panicking at times.

Judging from that short description, I'm in a very similar position. I've had IBS for 8 years and agoraphobia/panic attacks for the past 3. I've just finished uni, which I did the last 3 years of from home, and am trying to earn some money and get a graphic design business going. Fiancee is wonderful (otherwise I wouldn't be marrying him!) and appreciates that while I may not be bringing in much money I do all the 'housewifey' duties. Now CDs and DVDs are in the right boxes and he can always find some batteries when he needs them. The 'man drawer' (to borrow from Michael MacIntyre) has all but been abolished.

I don't know about other people with problems that can't be seen/don't affect you all the time, but I sometimes get the look from people of, "Your life must be half complete." Yes, there are things I'd like to do more easily/without thinking/without paniking. But there are also so many good things in our lives that illness doesn't have to affect. So when I'm doing those things I don't think about what I can't do.