Home help or support any advice on being new to this greatfully received

[sarahb73]

Hello, I have only just joined, I live in gloucester, I have just been diagonised with Lupus SLE, my health has declined draatically in last six months. I have three little girls, 2,4,7 - I am not sure if you would class my condition as disabled, but I use a walking stick a lot the time, have a lot of OT support and have been offered the hydrotheraphy pool... we are having to consider home help and support as my husband works long hours and shifts at night and weekends, so any knowledge of any agencies especially local ones to gloucester would be great. My middle daughter is disabled, she has ASD, sensory processing difficulties, and bialateral hearing aids.

Obviously my children have always been my top priority and the middle one has taken a lot of time getting her the right support in place, so my condition came out of the blue. I put a lot of my symptoms down to stress of dealing with what was happening to our family and the impact of her disability. So it came as a massive shock, when my health visitor suggested I saw a doctor as i have thinning hair and worsening joint pain.

The reality is now though that I cannot manage day to day on my own when my husband is at work, we have no family support so nursery, school drop offs pick ups etc are very difficult and as i am being told I have to adopt pacing, by the time i have done bathing, tea and mums taxi, housework is out of the question and I hate that as I like my home to be tidy and clean at all times. My Hubby has been amazing but he is only one person and six months of managing has started to show signs of cracking.

So on that note any advice on how others manage, and any home help organisations that we may be able to talk to for support (I appreciate there will be a cost) would be of great support.

As I say this is new to our family so any advice greatfully received.

thanks

Sarah x

Look forward to hearing back.

Sarah

hi & sorry to hear about your recent health problems, i've had m.e & chronic pain for 20 years since i was 11, & since pregnancy last year i got a condition that meant my pelvis & hips are now worn away & permanently damaged, which has also given me back problems with my si joints & discs. i've only recently come to "realise" these things that make me struggle to lead a normal life mean i'm disabled. i always thought i didn't have the "right" to say i was disabled with just the m.e & chronic pain, because, well, i wasn't paralysed, i can walk, but not far & it's very painful & exhausting. i only recently applied for a blue badge as i didn't think i needed one as much as other disabled people do, but since having my daughter 10 months ago my health got worse & my pelvic condition deterioated. so now i do say i'm disabled & i just got my blue badge through the other day & it is such a relief to know i can go out on my own a bit now & park right outside places.

the point i'm trying to make is please get whatever help you need, i struggled for too long & wish i had just asked for the help i needed ages ago, because it makes life so much easier to cope with. i know you say you don't have any family to help, but maybe a local care agency if you can afford it, or social services could help provide some help. disabled parents network are great for provding info & advice on getting help from social services & getting personal assistant.

childcare.co.uk might be worth a look for a mothers helper in your area, or perhaps you could use a childminder or babysitter for some help? there is also homestart that is a charity that may provide volunteer help in your area.

if you can afford a cleaner for an hour or two a week that is such a big help. the money i get for incapacity benefit & dla goes towards a cleaner each week, & also a childminder for my little girl once a week. i do have my parents close by to help & my neighbour will babysit, but my husband also takes a lot of the strain bless him.

i have to save my energy & keep my pain levels at bay by pacing everything i do & prioritising. i can't cook nice meals like i used to but we have simple healthy meals with little prep & we batch cook stuff to freeze. i have days where i don't even have the strength to shower by the time i've got my daughter up & we've had breakfast, so i use baby wipes to freshen up & use dry shampoo on my hair. it's not ideal but every little helps.

anyway i hope some of this might be able to help you, take care x