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How to cope with my MS and being a mother of 2.

Hello, I have been living with MS for 11 years, but I am getting worse with fatigue and brain fog.

my hubby works full time and I have no support from my family.- well unless I drive an hour to them.

im so tired and cannot keep Missing my little ones groups.

she is Two 1/2 and my eldest is 11.

my hubby moved us when his work did.

im near his parents but not my family. His parents do help but it’s structure.

If im suffering on an other day not the one they help, then I’m on my own.

my husband cannot take time of work and on many occasions I have pleaded with my family to come. But I’m alone.

i don’t know what help I can get for helping me with the children when it’s bad.

i was trying to get help before with the children centre… but they did not understand and made it so stressful, and I’m the end they could not help.

i don’t know how long I can keep putting myself threw this and it’s like I’m on overdrive and it will end. I don’t have an ms nurse near me do I keep travelling to Addenbrooks.

im stressed but not depressed which again is hard to explain to others.

some still think even my own family that ms is depression!

is any help out for mother’s with toddlers

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hi anon

i’m sorry that the children’s centres couldn’t/wouldn’t help you.

suretstart was set up to help families like yours.

say if you was a drug addict, they’d help.

what about your local church?

they often have things going on apart from services.

community centre?

local voluntary organisations?

spread your net wide and hope for a good catch.

carole x

hiya anon

i was a single mum to 4 when i was diagnosed with no family help nearby. kids were 2 3 12 13.

the princes trust were of great support with the older 2. not sure which ages they support currently. its really hard to get help with youngsters. i couldnt drive and found the most beneficial way to get some support was talk to the parents at toddlers/nursery.sometimes those parents would pick up/drop off my kids. in return i i would keep their kids for an hour or 2.i dont know how that works nowadays with all the protection stuff in place for kids but maybe its worth checking out? ‘normal’ parents help each other out so it should be the same for us?

perhaps ask the primary school whats on locally for under 5’s if u dont know? they might know of what help may be available.

local library often has under 5 groups-is that an option for you to access? i take my grand daughter to story time-i am welcomed in my powerchair.

gp or health visitor may have a suggestion?

if i think of anything else will let you know.

take care, ellie

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Perhaps you should contact your local council and ask for a Care Needs Assessment? There is lots of info on the web about how to get it, although I do understand that you might not feel up to it, but perhaps you could look into it when you feel able. It is designed to enable people to buy care in that they need. Seems to me that is what would help - assistance on a regular basis. Good luck.

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It’s just to complicated, I’m with two different councils.

i have no idea who does what and the stress in getting some reply is a pain.

i tried to get my little one a referral… my health visitor gave me lots of numbers.

bit after a visit was told they don’t do my region?

first I pay Aylesbury council the council tax., but I live inbeds?

seems no one wants to take on the responsibility?

my doctors in bucks and the school? But my postcode is bed?

im right on the boarder!

Thanks, I will look online but the last time I did this was told it was pip and I was refused?

I think ms sufferers need more expert help. Wish the people they send understand our condition.

not these who think one look at you,and it seems it’s how we are everyday?

this is a bad year which is surprising as I received treatment last year?

So sorry to hear of your struggles. In my county we have a group called , county name then Family Support. I did the training but then started working full time. Families in difficulty, such as yours, gets a trained person to visit you on a regular basis for a few hours to help in any way. Is it worth phoning Citizens advice? Hope you find something to help your family. x

How about contacting your local MP and putting your case to him or her? Phone and ask for an appointment.

As a representative of the people he is obliged to assist you in any way possible. Some form of communication/correspondence from him, on your behalf, can be a useful tool.

I will but I get letters from my surgery asking why do they still have to keep siding my blood test results tomy nuroligist?

They are useless because they never send them anyway.

they have no contact and keep informed what my neurologist asks.

i had a treatment last yr which requires monthly blood tests.

I got a very abrupt letter saying they don’t see why they need to keep doing this.

my consultant has made it clear for a number of months why, and I have suffered with low playlets which is a side effect.

this was back when I had the same treatment 8 years ago.

plus my doctor has changed and I get a letter just telling me,so it’s from the beginning again!

I can’t always have the energy to go and wish house calls were an option. Xxx