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Newbie and a registered Nurse - Carers UK Forum

Newbie and a registered Nurse

Tell us a bit about yourself here.
Hi All,

Just joined the forum tonight. I am a registered nurse by day and night and apart from that carer to my child who has arthritis which severely a defects his function and mobility.

Looking to hear from all you lovely people x
Hi Sandra,

Welcome to the forum.

Sounds like you spend your life caring! The NHS aren't the most understanding of employers, so I've been told. How old is your son?

I juggle work and caring too. My caree S has autism and is 23. I also teach in a special school.

Hi Sandra

I have 3 children still at home. My eldest, who is 16, has a mental health condition, and my middle one (14) has psoriasis and psoriatic arthritis. I was a full time teacher, but had to give up work earlier this year to look after my eldest son when he got really ill.

It sounds like you really have your hands full. Do you get much support?

Hi thank you so much for the lovely welcomes. I'm actually fortunate with my current employer in terms of their support. I would have had to quit otherwise given all the hospital appointments and flare ups which are totally unpredictable and to add to that his total clumsiness from his Hypermobility - regular falls, regular pain, baths in the middle of the night to manage pain etc... I've had a week reprieve from care this week and have caught up with much needed sleep!

In terms of support very little. My childcare is actually to the pin t where it's crucifying me now. Found it difficult to get a chdminder willing to be on call to collect from school at a moments notice but eventually did and it's costing me a fortune! Term time = £200 per week.... And she hasn't registered as a child minder so I can't claim anything. I would give up work in the morning but for my sanity I cant!

Thanks for reading my rant! Xx
I never found a good solution to childcare either - we just muddled along winging it between myself, my husband and my dad.

Have they ever done an MRI on your son? It turns out a lot of my son's pain is caused by tendonitis because the tendons are having to take more of the strain to make up for his hypermobile joints. He has now been referred to the orthopedic surgeons for steroid injections into the affected joints.

On a happier note, it does get easier as they get older. Now my son is 14, the clumsiness is much better, and his pain threshold is significantly higher. They have also been able to put him on methotrexate, which he tolerates really well, and it has definitely made a difference to his joints and skin. He has even joined the Young Farmers and gets stuck in. We still get niggled for attendance at school (I think it was 92% this year), but as he has to see three different consultants at two hospitals, I think that's not too bad.
Hi Sandra, welcome to the forum. Childcare for a special needs child is so difficult, or plain impossible. I studied for a degree when my son with SLD was growing up, aware that he would one day have to move away from home. After graduation I was invited to head the special needs courses at one of the largest "sixth form" colleges in the country, but lack of suitable care meant I couldn't take the job. Biggest regret of my life, especially as I was widowed a few years later. Work not only provides the obvious money, but also escapism and mental stimulation!