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sparkleapril

Hi everyone,

I am looking to make new friends to chat too.

Since my disability I have felt lonely and lost family and friends over then not understanding my condition.

I suffer with Hemiplegic migraines and I am in a wheelchair.

66Mustang

Nice to meet you!!!! I think it takes a strong person to stick by your principals, it would be easy to let it slide out of necessity just to keep something resembling a friend. I hope you find lots of understanding people and proper friends who you can chat to 🙂

sparkleapril

Nice to meet you too 66Mustang.

Its just frustrating to keep explaining my rare condition to the same friends and some family. I think they finding it difficult I have a disability.

Some of my family don't bother with me as much or friends.

I have adapted to change because I have had too.

I was a independent person. I am only 40 years old with children.

I am waiting to see an neurologist.

Jimm_Scope

Hi @sparkleapril, welcome to the community 😊 I'm sorry to hear about the lost family and friends. You'll find people who have gone through very similar experiences, you certainly aren't alone here. You'll find many people chatting everyday in our "How is your day?" discussion in our Coffee Lounge category

sparkleapril

Hi @Jimm_Scope ,

Thank you, and nice to meet you. 😊

sparkleapril

Hi,

Yeah I am good today just feeling a little sad, cause one of my sister's was horrible yesterday cause i cant make her wedding.

My sister wants me to travel up North from the middle of England with my children, a new baby and me being in a wheelchair.

I have sent family and friends links but it's like can't be bothered to look into it but keep asking me questions.

Thank you I will have a look, my Hemiplegic migraines causes sezuires and because of that I can't walk, been in a wheelchair since July last year.

sparkleapril

@MeMia

sparkleapril

Nice to meet you @MeMia

sparkleapril

Hi @monkey83

sparkleapril

Nice to meet you

sparkleapril

Hi @ MeMia,

Thank you that's a good idea. I see an neurologist on the 11th of July. I have been the waiting list since last year. I need to be on medication to stop the migraines that is causing the sezuires and hopefully get help with my mobility.

My baby is due in August. I have 3 other Children which oldest is 18 years old and my best friend helping. I had to end my relationship with my ex because I was suffering domestic abuse but the police are dealing with him.

Just had a meeting to say with social services to try and sort my carers out because they are not doing what they should be.

I am ok and coping well due to what I am going through. It's just frustrating getting everything sorted and explaining to family and friends. You realize who is there if anything goes wrong.

sparkleapril

I am ok today and the meeting went well just hopefully get what I need. Waiting on lift to be fitted and a wet room.

Just resting today while my kids are in school.

sparkleapril

I got upset tho a few weeks ago because I was waiting on hospital transport and the failed to pick me up to see the neurologist so I complain and now they are seeing me on the 11th so I am not on the waiting list again.

sparkleapril

Morning @MeMia

I will feel alot better when I see the neurologist on the 11th cause it's another step forward to getting better the best I can.

Trying to change the carers, because I am not happy with them they seem to rush everything. I haven't had my hair washed for two months. My best friend has been taking me to a disabled shower when she can to help, but her husband isn't well as it is. I am hoping I can get a PA but it's hard work to get the social services to listen. They plan to have another meeting.

Yes I will stay Intouch.

None of my family are on here

sparkleapril

I have spoken to the carers manager today, she phoned me so I think my social worker has complained.

I told the manager I am not happy with one of the carers because she comes what time she wants.

I told her I haven't had my hair washed for two months and the carers refusing light housework duties.

I have complained so many times so I think a different carering company would be better and I just pay the difference.

They always rush for the next client and get thier pay. I get help with costs at the moment but I think I am gonna have to look for private care. So the social services said I can do that and I pay the difference. It's £27 and hour tho so that will soon will add up but I need the right care package.

Not sure if I get to choose my wet room decor, be nice if I can.

My glass lift is being fitted in my living room to go straight into my bedroom.

But the social worker has told me I could be waiting another 18 months. I hope not cause I have been trying to get them to sort since last year. I have signed the form for the lift to be ordered so surely that should not take to long. Been waiting 4 weeks since.

Your home is your home and sure your garden is lovely Xx I do have a garden but with no ramp because it will take most of the garden up and the children need it to play in.

Definitely invest in a gardener it helps alot. Then you both can enjoy the garden more. Try and get trees planted so it's not over looked to much. Kitchen herb's are nice to grow

I wanted to move to a bungalow but I can't find a 3 bedroom that will allow families.

sparkleapril

Hi @MeMia

Yeah I think the app was down yesterday cause I posted to you but it didn't show up till today.

Great chatting to you too, nice some one to talk too that understands.

Yes I think it's a new design for the lift and safer way as a stair lift isn't incase I had a seizure. Yes I have told my kids already they will be using the stairs.

Happy you both had a good day. Yeah it's not warm here today thankfully as it's been too hot last week.

The social services are going to look to see what other carers they have working for them and if I find my own I have to get the social services to agree. They have also complained to the company I have at the moment cause the manager phoned me yesterday and found out one of my carers as been getting paid for my mis calls so she is in trouble.

Had my hair washed today 🥰

Yes I think your limited when the local council or social services sort the carer company out. But you can ask for a review meeting and tell them what care you need for your husband and see if you can go private and ask the council to pay the difference.

It is daylight robbery cause we have to pay towards care to get the right care but health and mentally a better carer is best I think.

But they is always funding and grants to help towards costs.

Health, dentists and schooling we probably have to pay more of because of government cuts.

sparkleapril

Morning @MeMia

I was bed bound to start with but now I can transfer to my wheelchair, mobility scooter ect but it's very tiring.

I am hoping when I see the neurologist that they can help with my mobility but my left side is weak and lost alot of muscle and haven't been able to walk for a year.

What is wrong with your husband if you don't mind me asking?

Yes the social services but my carers in place while I was in hospital and I didn't have a day, which is not right. I have found out tho you can ask for a payment card from the social services to help pay for the carers depending on your income. So if you can find a better carering company for your husband then definitely look into it and ask the council.

I am trying at the moment to get a payment card to help pay a private company and I will have to pay £200 difference if the Adult social agree to it. I am only getting 10 hours care and it's not enough I need at least 21 hours.

The carer was 35 minutes late yesterday evening and when I phoned the office they said sorry we are held up and short staffed so I wasn't happy this is why I am going to change.

Well just spoke to my adult social worker she said I won't be getting more hours until they know what the neurologist says about my Hemiplegic Migraines.

Yeah I don't have any help with extra with toenails ect lucky I can just manage.

I do the cooking.

sparkleapril

Morning @MeMia

Awwwwwwww bless him, happy you both had a good day yesterday. 😊

I am trying my best as I can as my children need me.

My oldest daughter wanted to go to my sister's wedding but she can't afford to go. My sister has been not nice to me cause I won't go to her wedding because I think it will be too much with a new baby and being in a wheelchair. Plus she lives 5 hours away. A video call was mentioned but my sister hasn't been very supportive with my illness or pregnancy. I don't want to fall out with her but she has very stressful.

My sister was asking me for her wedding gift early and wanted more money and I told her if she didn't stop asking me she won't get anything and she was vile.

My sister travelled to pick her new pet up and drove past my home all because I won't go to her wedding.

Yes I could start a new thread.

Got my scan today to check there isn't too much fluid on baby.

I have my good days too but some I do feel fed up but I just get on with it as that's the only choice I have. Got to keep staying strong.

sparkleapril

Added two new threads thank you @MeMia

sparkleapril

Afternoon @MeMia

sparkleapril

That's really good you both have more good days Xx 🥰💕

Awwwwwwww that sounds lovely a nice chilled bottle of Champagne once a week, with your best friend, something nice to look forward too.

My best friend is coming over tonight and we are going to have a Chinese. Treating her for being a good friend.

Just got back from football with my son and my daughters with thier nana this weekend so a nice chilled weekend but I do miss them tho.

Yeah I had a close relationship with my sister but since I told her I was pregnant and can't make her wedding due to expenses and be too tired to travel 5 hours in a wheelchair with a baby and my other children she has been distant and horrible.

Have a lovely weekend Xx