What Is Your Illness Or Who Ever You Care For

mspig

hi all, i am a carer to two out of my three boys.

My three year old has a condition call X-Linked Agammaglobulinaemia - which basically means he was born without an immune system(bit more complex as he has missing iggs, igms etc not that i expect you all to understand) - there is no cure for it and it is life threatening so we take each day as it comes. He has prophalatic antibiotics(twice daily) aswell as gammagobulin(liquid blood) infused into his body weekly to give him a partial fake immune system. He goes neutropenic often which doesn't help, so everything has to be clean and antibacterialised etc, he had mrsa twice in his neck which resulted in surgery and spends alot of time in hospital. He also has to have blood tested every 4 months to make sure its not contaminated from the blood products he is being given and to see if his gammaglobulin has to be increased.

My 5 year old has a bit of everything, he is autisic, low tone, hyper mobility joints, no stomach muscle, dyspraxia. He has to have physio weekly to help, and often uses a wheelchair if were going any distance as his knee joints are too loose to take the pressure of his body for too long.

But i love every minute of my life with my kids and hubby as there unique and lovely, caring lads who are growing up fast.

lozzer90

I have.........
Athritis in both wrists & hands
IBS
& Iam deaf which only happened 5yrs ago due to a freak of nature

bookworm2_2

Hi there, I to am a newbie. I have fibromyalgia newly diagnosed and osteo arthritis. I care for my better half who has asbestosis and my father who has had bladder cancer and also has spondylosis of spine. All good fun then!!

lolababy

Looking at the posts Iv been thinking that it maybe an idea for people to say what part of the country they are in. This way maybe people can pass on places and services which have helped them. it may also provide people with a network of people to meet up with.
Im sure that a lot of people on here feel isolated due to their illness or being a carer.
How do other people feel.

catsy_2

Hi I am also a newbie, and quite young - 23. I went through my teens with ever increasing pain in my right ear. It got so bad I couldn't carry on a normal life and eventually after numerous tests was diagnosed with a very very rare form of slow growing cancer at 21. I had surgery and radiotherapy. It seemed all was going so well (doesn't it always!) and then in October suddenly went a bit deaf in that ear. It has been getting progressively worse and I get ringing (it's the inner ear). I'm due another MRI scan at the end of the month (I haven't had one for 18months so good for a check up anyway) just to make sure it's not the cancer back but the docs think its a side effect of the radiotherapy. I'm seeing specialists about a hearing aid, which will have to be specially made as my ear is now a very funny shape. Luckily I have a great family and a fantastic OH who I was with for 1.5yrs when I was diagnosed - not many 22 yr old guys will stick around through all of that! (4 yrs together in April!)

Today was told I also have IBS - fantasic!

I have since realised life is too short, but do need to stop stressing over every little thing (to help my IBS) which I seem to do. All of this effects so many aspects of my life, it's amazing how some of you other people cope with much more debilitating illnesses - definately worth medals!!

I also agree with lolababy about listing where we are for help with similar things. I live in Berkshire and had my surgery at Oxford and radiotherapy at Mount Vernon - who are great - but don't really know of any support groups, especially for young people, as many of my peers don't really understand it all and it frustrates me how much they take things (life) for granted.

lolababy

Hi Catsy Iv looked up a cancer support forum for young people. Iv not looked at it so I dont know if you will find it suitable;
https://www.planetcancer.org
Let me know if its of any help.

elaina79

I am a carer for my husband who has bi-polar disorder with anxiety. I am also a SAHM and have 2 children who are 6 and 4. Am expecting baby no 3 in June.
If that wasn't enough I have scoliosis of the spine and IBS. Luckily my IBS syptoms go away when I'm pregnant, they come back with a vengence after the birth though.

tenacioust123

I have a failed fusion of lumbar spine, DDD, foot drop, sciatica, facet dieaese and nerve damage I have no feeling in my left thigh and left foot.

Oh and depression, hmm I wonder why!! I do try and keep in a good frame of mind

Mandymull

i am mum to two girls one aged 16 and the other 15.

E is 16 and has rett syndrome, is non verbal, epileptic, profund learning difficulties, autistic, ADHD, dislocated left hip,anxiety disorder, doubly incontinent,osteoporosis, scoliosis- wears a boston back brace, has arthritis, wears bilateral afos, 3inch shoe riase on left foot, and wheelchair user outdoors,

T is 15, has rett syndrome, epileptic, pierre robin syndrome, non verbal, profound learning difficulties, doubly incontinent, osteoporosis, fed by gastrostomy tube and uses a wheelchair outdoors.

I have my hands full daily giving them total care...
Mandy

Fear_Manach

mariesuzi wrote: »

like you fear manach im a 4 year survivor of cervical cancer , stage 3, do suffer badly with radiotherapy damage but thankful to still be here to tell my story :j
hope things get a bit better for you fear manach
xxx

Thank you mariesuzi. Just a wee bit down/scared about it at the minute as have to go back in for another op shortly - but reading yours and all of the other posts here make me feel very lucky to be alive. Thanks again xxx