Rant - coping with disability and partner

so sorry had the same.i am disability all over the place.if i stand on my front porch i look normal but.i needif leave the house have aphasia no one knows what it is so no. patience.
no strength can not pick up anything over 5lbs
i dont know how to help but just want you to know you are not alone.

I was born disabled I look normal or should say able bodied as no such thing as normal. If I am sitting down it's when I move then you see I am disabled. But I have never moaned about looking after others . I was brought up in an large extended family,knew all my great aunts and uncles etc. So I wasn't made to feel different.

When my children where 4 and 6 months the limb jerks started in 1988 and the pain got worse. I have had pain in my legs and fallen my whole life. I was a hands on mom only thing I couldn't do was go out by myself. And as a family went in a wheelchair until the children where older. My walking was and still is bad . But it doesn't stop me .

It was my fit healthy husband who got cancer and died aged 47 I was 45. Our children 20 and 16. They left home 2 years later son to uni and made my daughter go back to the city where she got her degree as she had been doing temp jobs and not using her education. They needed to live there our lives. They both lived 100 miles from me .

I couldn't move as I had both parents and mother in law who needed me . Nursed my dad with mom until he died in 2007 aged 80. Mother in law died in 2015 aged 91. My mom lived the last 18 months of her life with me she had cancer and dementia. My mom died 4 months before her body and was violent but it wasn't my mom . And the violence is out of fear she didn't know who she was ,where or who I was she thought I was her mom. Mom died in 2017 aged 90.

I looked after everyone myself . Until mom died I didn't realise how much my own health had suffered . Then I got jaundice and was seriously ill for 5 months . First time in my life I needed someone with me 24/7 there was no one. I had never been frightened of living on my own until then. When my gastrologist discharged me he told me people with my bilirubin levels normally died. Told him I was glad he hadn't told me that before.

But for all it cost me I would do it all again . I never moaned about looking after others as it's what I was brought up to do. In our extended family if someone needed help you did it . My dad always said no such thing as can't .
Please don't moan about looking after your husband because you are disabled be lucky you still have him.

I finally moved to live near my children 5 years ago . Have better healthcare here. In 2020 found out I was born with a small hole in the side of my heart . In 2022 finally know what my disability is and only because my new neurologist had my whole genome genetically tested and it's rare. Luckily he had put me on a tablet which within 2 weeks stopped my limb jerks and the seizures I had been getting which started in 2019.

I had fought since 1988 when my turn GP told me point blank you are disabled and entitled to disability benefits. Took me until 2023 to get them in the form of PIP and only because the Brain Charity got me a solicitor pro bono and went to PIP tribunal which I was awarded enhanced PIP for living and enhanced PIP for living indefinitely. And back dated until March 2022 when I asked for the forms.

My disability is rare my neurologist has never had a patient with it nor his colleagues. It doesn't just effect me physically and the pain has effected my arms since 2017 permanently . It effects all my aspects of my whole life.

Thankfully having my diagnosis means thanks to the rare disease society found a Facebook group with it and have learnt so much . I have seen what babies and young children go through with it which made me cry to think my parents when through that and they must have been frightened. My brother was born 16 months after me and he hasn't got it. Because I have the disability the mutation I have means I am not a carrier for it . So my children and 5 grandson's haven't got it.

Please do not use your disability as an excuse. Disabled doesn't mean incapable. I live by myself and live my life to the full. I know what my limitations are and do push myself to much at times. But my husband wanted me to live the best life I can and since I moved here I can . I found me again I didn't realise I had lost me . My grief for my husband has gotten worse over the years but cope but it can still overwhelm me at times.

I am very independent and hate asking for help. My disability is getting worse with age but I won't let it win . But it's such a relief to have both diagnosis. I am no longer weird but have hereditary Hyperekplexia gene mutation SLC6A5 type 3 and Paroxysmal atrial fibrillation. On medication for both . I am now 66 and got my state pension this year and for the first time since my husband died no longer have to worry about money. And this year I can have the heating as long as I need and not just 3 hours a day like in the past.

dotpocka get in touch with the Braun Charity it's based in Liverpool but helps people all over the country and can put you in touch with a support group near you . Plus they will make sure you get all the financial help you need . Have a look at their website and they have a Facebook page. One of the volunteers has aphasia it took her voice and when she started talking she spoke with an eastern European accent and she wanted to sound Liverpudlian. Her daughter told her sing and she got her accent back . She doesn't talk or move like she did but lives a full life . I have heard her sing and she had the most beautiful voice .

Please get in touch with them today you are not alone. I can never thank them enough as they helped me and have been going to a gel printing class for 8 weeks it ended last week but we are putting on an exhibition from today in my library for 12 days. I think it hilarious me in an art exhibition 🤣. It took me 2 hours each way to get too the Brain Charity by bus and train but I loved going . If I see another activity I like I will go to that.

I got to sit fit class near me on Monday and my craft group on a Thursday.

There are a lot of people with aphasia the Brain Charity will help you .

I really dont know much about this.

When your OH is in a "good" mood, is it possible to reason with him then?

Alos, could you write things down that you want to say, and give him the note at a suitable time?

do you have children or other close friends or relatives who could help explain to him.
some people, esp men, are kind of self-centred when it comes to respecting the fact that others are different, are coping with far more than they have ever known.
could you have a care-worker come in say for an hour a day, or 2 half hours, to help you.
i wish you all the best.

Is there no-one who could help you discuss this with your husband? He might be more willing to listen to your doctor than to you, or better able to understand the seriousness of the situation, if a medical professional asked for an interview.

grandtanteJE65

Is there no-one who could help you discuss this with your husband? He might be more willing to listen to your doctor than to you, or better able to understand the seriousness of the situation, if a medical professional asked for an interview.

Or another relative?

I always forget this point.

I have a relative who is a bit ill. He doesnt take notice of his son and daughter much. But will listen to his sister-in-law!

Do you have an actual diagnosis?
Could you print off something from that illness’s website to show your DH? Maybe ask him to accompany you to your next GP/Consultant appointment.

I was concerned about your last statement - that you’d move on, except you need him to help you - maybe he’s got that impression too?
Would you qualify for AA, then you could employ others to help you with some tasks?

I agree with previous posters that you need an out-sider or family member to speak to your DH.

I think one of the issues is that until one has personally experienced it IS hard to understand.

Particularly when one looks perfectly healthy.

I too have various mobility limiting issues and chronic pain conditions.

I look fine. My husband varies in his help and empathy and attitude, my conditions affect me differently most days, can be weather dependent (too cold, too damp, too hot), whether I’ve slept well the night before and how much I’ve pushed myself the preceding day.

These conditions only started when I was in my mid forties and are degenerative.

No advice but you have my utmost empathy gentleshores

I agree with Cossy. Until you have experienced the problems yourself it is difficult to underetand...but not impossible.
Maybe like people not wanting to make a will as it involves thinking about your own death perhaps he can't take onboard your "frailty" or disability. He wants to only see you as fully able. Sympathies. Can you ask family to intercede?

I can sympathise! I had a mild stroke four months ago and although my disabilities are minimal DH can make me feel helpless and hopeless! For instance,when we were going to the pharmacy today,with limited time till it closed,he said "I,'ll go because I,'ll be quicker" ! In the end we both went AND got there in five minutes,ten minutes before they closed! I said nothing!

HelterSkelter1

I agree with Cossy. Until you have experienced the problems yourself it is difficult to underetand...but not impossible.
Maybe like people not wanting to make a will as it involves thinking about your own death perhaps he can't take onboard your "frailty" or disability. He wants to only see you as fully able. Sympathies. Can you ask family to intercede?

Thank you. . The point is - he is being unkind.

Do you think he really understands you have new needs, and is being mean.

Or does he not really understand?

I would think your approach to him would be different, depending on which situation.

It can be very difficult being a Carer. I have cared for my Husband for 10 years and would do anything for him, He is very grateful for the help that I am able to give. For me it is a four letter word called love. It is a shame that your OH cannot see how your needs have changed and adapt accordingly. If it was the other way round I am sure he would accept any support that you could give Him.

fancythat

Do you think he really understands you have new needs, and is being mean.

Or does he not really understand?

I would think your approach to him would be different, depending on which situation.

I really don't know. But it feels like taking advantage of the fact I can't get out as much (not on my own anyway) or do any gardening. I was the only one that did any gardening for years. It's sad I can't manage it now but to make unilateral changes to it without even discussing with me and to be insensitive about my need for a new chair. Some of it is just childish petulance.

Judy54

It can be very difficult being a Carer. I have cared for my Husband for 10 years and would do anything for him, He is very grateful for the help that I am able to give. For me it is a four letter word called love. It is a shame that your OH cannot see how your needs have changed and adapt accordingly. If it was the other way round I am sure he would accept any support that you could give Him.

Yes I have also cared for him when he's been unwell - although in the last 10 years he's been the fit one and I have bits going. I'm not at the point of needing a carer but need to ask for help with the odd thing - when I've always been very independent - had to do everything when he was working.

It's like I am invisible.

Whiff

I was born disabled I look normal or should say able bodied as no such thing as normal. If I am sitting down it's when I move then you see I am disabled. But I have never moaned about looking after others . I was brought up in an large extended family,knew all my great aunts and uncles etc. So I wasn't made to feel different.

When my children where 4 and 6 months the limb jerks started in 1988 and the pain got worse. I have had pain in my legs and fallen my whole life. I was a hands on mom only thing I couldn't do was go out by myself. And as a family went in a wheelchair until the children where older. My walking was and still is bad . But it doesn't stop me .

It was my fit healthy husband who got cancer and died aged 47 I was 45. Our children 20 and 16. They left home 2 years later son to uni and made my daughter go back to the city where she got her degree as she had been doing temp jobs and not using her education. They needed to live there our lives. They both lived 100 miles from me .

I couldn't move as I had both parents and mother in law who needed me . Nursed my dad with mom until he died in 2007 aged 80. Mother in law died in 2015 aged 91. My mom lived the last 18 months of her life with me she had cancer and dementia. My mom died 4 months before her body and was violent but it wasn't my mom . And the violence is out of fear she didn't know who she was ,where or who I was she thought I was her mom. Mom died in 2017 aged 90.

I looked after everyone myself . Until mom died I didn't realise how much my own health had suffered . Then I got jaundice and was seriously ill for 5 months . First time in my life I needed someone with me 24/7 there was no one. I had never been frightened of living on my own until then. When my gastrologist discharged me he told me people with my bilirubin levels normally died. Told him I was glad he hadn't told me that before.

But for all it cost me I would do it all again . I never moaned about looking after others as it's what I was brought up to do. In our extended family if someone needed help you did it . My dad always said no such thing as can't .
Please don't moan about looking after your husband because you are disabled be lucky you still have him.

I finally moved to live near my children 5 years ago . Have better healthcare here. In 2020 found out I was born with a small hole in the side of my heart . In 2022 finally know what my disability is and only because my new neurologist had my whole genome genetically tested and it's rare. Luckily he had put me on a tablet which within 2 weeks stopped my limb jerks and the seizures I had been getting which started in 2019.

I had fought since 1988 when my turn GP told me point blank you are disabled and entitled to disability benefits. Took me until 2023 to get them in the form of PIP and only because the Brain Charity got me a solicitor pro bono and went to PIP tribunal which I was awarded enhanced PIP for living and enhanced PIP for living indefinitely. And back dated until March 2022 when I asked for the forms.

My disability is rare my neurologist has never had a patient with it nor his colleagues. It doesn't just effect me physically and the pain has effected my arms since 2017 permanently . It effects all my aspects of my whole life.

Thankfully having my diagnosis means thanks to the rare disease society found a Facebook group with it and have learnt so much . I have seen what babies and young children go through with it which made me cry to think my parents when through that and they must have been frightened. My brother was born 16 months after me and he hasn't got it. Because I have the disability the mutation I have means I am not a carrier for it . So my children and 5 grandson's haven't got it.

Please do not use your disability as an excuse. Disabled doesn't mean incapable. I live by myself and live my life to the full. I know what my limitations are and do push myself to much at times. But my husband wanted me to live the best life I can and since I moved here I can . I found me again I didn't realise I had lost me . My grief for my husband has gotten worse over the years but cope but it can still overwhelm me at times.

I am very independent and hate asking for help. My disability is getting worse with age but I won't let it win . But it's such a relief to have both diagnosis. I am no longer weird but have hereditary Hyperekplexia gene mutation SLC6A5 type 3 and Paroxysmal atrial fibrillation. On medication for both . I am now 66 and got my state pension this year and for the first time since my husband died no longer have to worry about money. And this year I can have the heating as long as I need and not just 3 hours a day like in the past.

I am really sorry you lost your husband. And you've achieved so much as well. I bet your H didn't vandalise the garden though! I can only call it that as he set to changing things without discussing and removed something I loved.

We're still talking. But I have to see the garden every time I look out of the window and it hurts my heart. That he changed things so drastically. I'm not sure I can get past this one.

Wiff, I read your post and I have to say you’re a very brave lady. Keep going girl. 💐

What can you do gentleshores? If you can't get past this one, and I understand from experience what that means, who can you talk to about it? I am not religious, but if you are is there someone at your church to talk it over with? Have you talked to him about exactly how it has made you feel? I would be upset about an undiscussed and unagreed change to my garden or anything else. He is not showing a lot of love to you or is being a bit dense.
I do sympathise, sometimes the straw does break the camel's back and it can often be something relatively minor. You need to get what you want to say in order and say it to someone. Or write it down for him to read.

I feel your pain. I have fibromyalgia, mild arthritis and high blood pressure. I really want to declutter to make the house easier to keep clean and more relaxing to live in but my husband refuses to get rid of anything of his - he just buys more stuff. If he wasn't with me he would be one of those hoarders who live in houses full up with loads of stuff. I used to keep the garden tidy and manageable but can't anymore. He has planted loads of flowers, bushes and shrubs but doesn't keep them under control and the garden is a mess. I tell myself it's a " wildlife garden" to ease the pain I feel when I look out of the window. There are also piles of rubbish under our car port which make me feel ashamed even though it's not my rubbish. When I suggest hiring a small skip or a man with a van ( and a licence!) To help us dispose of it he insists he will sort it out and take it to the tip, but never does.

Whiff I applaud your determination but I do wonder if only female members of your family did the caring? Maybe not, but it is so often the case and it would be great if there was an equal expectation of men stepping up for caring duties within families.
Also in the case of the OP, the OH seems uncaring and that is what hurts.

Judy54

It can be very difficult being a Carer. I have cared for my Husband for 10 years and would do anything for him, He is very grateful for the help that I am able to give. For me it is a four letter word called love. It is a shame that your OH cannot see how your needs have changed and adapt accordingly. If it was the other way round I am sure he would accept any support that you could give Him.

Likewise I cared for my DH too. Would have done anything for him. Just wish he was still here for me to love and care for. The love he gave me in return was everything.

so are you reconsidering the relationship, OP ?