What Is Your Illness Or Who Ever You Care For

huxley

Hi, ladylumps45, I have protien S defficiency and am on warfarin for life. Had 1st dvt about 8yrs ago, doctor sent me for a blood test as my health problems meant lack of mobolity wasnt a new thing also dh had had a p.e. and she wanted to check that it wasnt anything that could be passed on to our 3 children, he was fine but mine wasn't it can be heredertery(sp!) but is more risky to girls (pregnancy) luckily dd has been cleared, the killer was the day they decided to test me I lost my mum to a clot.

mumof2girls_2

Hi Everyone!

I have HMS (Hypermobility Syndrome) to date between 14 knee dislocations, 4 rib dislocations, shoulder and hip! ha!

I am still working but I am in daily pain, 2 scared to claim DLA as I am still able to work....just.

Also had second dose of viral meningitis which has left me with permanent debilitating migraines!

My 2 daughters 3 and 20 months keep me going!

endure

ladybelle wrote: »

LOL They too saved me from crawling up my hall screaming, but they did not make me any better. I had years of therapy until they washed their hands of me and said there was nothing more that could be done with me. I found Claire Weekes myself and yes, she has got me to the point I am at now. I say Float, Accept, etc like a mantra. I have her CD downloaded and play it daily but it isnt a cure for me, it's just at least given me normality in my own home.
I'm so happy it worked for you, but I dont think anything ever will cure me. I've had it far too long now. And every time I have pushed too much and tried to go alone, I end up panicking in my own home, and unable to breathe and there is nothing worse than feeling like that in your own home

It took 18 months of daily reading (I didn't have the CDs or tapes) for me, it was the explanation that the things that were happening to me (panic attacks, anxiety, all that stuff) were natural physical reactions to my thinking that finally got me out of the hole.

ladylumps45

Hi, ladylumps45, I have protien S defficiency and am on warfarin for life. Had 1st dvt about 8yrs ago, doctor sent me for a blood test as my health problems meant lack of mobolity

wasnt a new thing also dh had had a p.e. and she wanted to check that it wasnt anything that could be passed on to our 3 children, he was fine but mine wasn't it can be heredertery(sp!) but is more risky to girls (pregnancy) luckily dd has been cleared, the killer was the day they decided to test me I lost my mum to a clot

hi huxley,wondered what the blood condition was as i have one too but its not the same as you.sorry about your mum.nearly lost my mum to a clot 3 times on her lungs.she is now on warfarin for life like you.

huxley

Hi, ladylumps45 :hello: the thing with clots is they dont always have definite signs, even with the warfarin its only the regular blood tests that realy let you know how things are going. My mum had a check up for diabetes the day before and just thought she was feeling off colour due to that. You take care of you and your mum .

Trix

Hi all :hello:

My daughter has cerebral palsy (!!!!!! diplegia is the exact form of it). She uses a wheelchair and has moderate learning difficulties - but is a [STRIKE]pain in the backside[/STRIKE] lovely and caring cheerful kid with a quick wit and wicked sense of humour

SEE

I take care of my adult son. He's autistic with tourettes, hypotonia, and palsy. I never get respite or help, he has no social worker as none of them are interested, and sometimes its really hard because his medication has now made him 19stone and full of fluid retention. Caring for him means I am now almost disabled myself and we live in absolute poverty meaning I have to grow our food. His condition means we have ceiling that fall down, holes in walls, and any extra money he gets for being disabled is spent on clothes, sheets and repairs.

We'd love a walk in shower and taps that turn on easily, it would mean I wouldn't have to bathe him anymore and keep slipping my discs trying to handle him.

I love my son, but it has destroyed my confidence, and my ability to socialise. I am now unemployable and don't stand a chance in hell of ever having a relationship.

I'd just like to thank Tony Blair, Gordon Brown, and Maggie Thatcher for being complete and utter unthinking twits.

Saffronsmum

Hi, i have 2 daughters with Autism .

clarissa

I was diagnosed with pseudomyxoma peritonei (PMP), which is appendix cancer, in August 2006. This entailed having all non-essential abdominal organs removed and essential ones surface stripped in 3 operations totalling 30+ hours in the space of a year with intraperitoneal heated chemotherapy during surgery. I'm waiting for CT results, which WILL BE clear!

All in all I recovered pretty well, just an ileostomy and muscle wastage, back to work within 4 months of third op. It was unlucky getting PMP as the incidence is about 1 in a million with no known causes.

Just as life was getting back to normal I started getting breathless and having palpitations and fainting. After loads of investigations I've recently been diagnosed with left ventricular non-compacted cardiomyopathy. This too is a rare disease and is also in the region of 1 in a million incidence, congential and completely unrelated to the cancer. I consider this beyond unlucky! Doctors have never heard of or know anything about either disease, whereas I have a specialist team and fantastic care for the PMP the cardiac care I have received is pretty poor in my opinion.

At the moment I'm still working full-time but it's a huge struggle. I can only walk about 50-100m without having palpitations, angina, mega-low BP and breathlessness. I'm a nurse manager and luckily have been able to adapt my job to be mainly office-based. I'm going to get a mobility scooter to make things a bit easier getting round work which will hopefully enable me to stay working longer and I might be able to go shopping for the first time since last November. My OH has been fantastic and has taken over most of the work at home so I've got the energy and feel well enough to go to work still. He's my hero.

I coped well with the cancer, I find the cardiomyopathy horrendous, very debilitating and frightening. I've eventually plucked up the courage to apply for DLA and my forms go off tomorrow.

shazrobo

i am a carer for my twin sons, who have severe ADHD, suspected autism, and learning difficulties, having had no help or respite, i have lost all my confidence, and suffer from depression and anxiety.