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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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sunshine44

Que sera sera
Messages
1,131
So, since becoming severely ill with all of this over the past 2 1/2 years..... my husband has been completely unsupportive and believes I have created this illness mostly.

I have tried so many things to get better from IV antibiotics and lots of other expensive treatments but am now bedbound and working my way through/out of this.

We have two children together. As you can imagine this has been incredibly challenging having them see their mother go from healthy to so ill but then to have a father that is a basketcase and yells all the time, sees no wrongdoing as he feels hes entitled to his anger and so forth.

This isn't about pulling the victim card but lets just say he has been awful, planning backpacking trips (out of state) when I needed rides to and from IV treatments in 2017, blaming me for getting sick, yelling at me when my legs couldn't walk and I was terrified of what was happening to me and please get me to a hospital, making fun of me for being in a wheelchair, etc. Its really not good....but hes our sole provider and I have to get better to be able to support myself and children.

As some of you know from boards, I have been in a very difficult place physically and emotionally since August crash. I am at a new level now. I need to get myself empowered....somehow. He threatens of leaving daily now. Does anyone have any ideas of things I can do to help bring in money? ha! in my condition but you know....the limited amount of time I can spend on computer (I have been denied disability due to being a homemaker so many years and running an etsy shop). I know where there is a will there is a way. I don't exactly see it right now but I have to have a plan for me and my kids.

We have already loaned money from family for the first time in our lives over past year...that is not an option anymore.

Yes, I am terrified if he leaves how will I make food, etc but I need to focus right now on what I can do because I already live in so much fear.

Funny, how when I was beautiful and charming and functional....he was there …..but when shit hit the fan.....he couldn't do the thick of this Through sickness and health.....not so much it turns out.. I am learning some very difficult lessons.

I know caregivers do NOT have an easy road either. But yelling and making a person feel bad for existing during some of the worst days of their life...isn't ok either.
 
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Jackdaw

Senior Member
Messages
127
Location
UK
I don’t have any advice or knowledge about the financial support over there but I will be thinking of you.

Sounds like your husband needs a lesson in responsibilities and compassion. He shouldn’t treat anyone this way, least of all his wife.

Never forget that it isn’t your fault you are ill. And your children will respond to and value the love that you give which is the most precious thing.

Praying for good things for you and your kids.
 

sunshine44

Que sera sera
Messages
1,131
Thanks guys. I know, I tried to protect him for years always citing how hard this must be for him but its not right. He told me our marriage is on hold until I heal last year :rolleyes: Anyways, I need to really start empowering myself because I get so fearful of the what if's if I don't.

I appreciate the bit about my children. I get so angry for them that they don't have a father gently explaining what is happening in this scary situation but instead always lashing out at all of us. So, I am doing what I can with what I have, where I am at.
 
Messages
97
Location
Glasgow, Scotland
I'm so sorry to hear that you're going through these horrible times with your husband being so ignorant and unsupportive. We sadly live in a society where we are tought that life is whatever you choose it to be and that anything bad that happens to you is always your fault, but in reality that's completely untrue and no one should me made to feel bad for circumstances they never chose. And certainly no one bedridden with CFS should ever be treated like this, I'm saddened to hear this.

I hope you have other friends and family around you that are supportive. And if your husband is behaving like this and can't handle the responsibilities of caring for you, not to mention your children, he should at least get some counceling and anger managment lessions. And if he can't do that and won't change, those responsibilities should be handed over to someone who can genuinely care for you and wants you to get better. Someone who makes you fear for your life, leaves you at their mercy, yells abuse at you, makes fun of your illness and victim blames you in the worst days of your life is NOT a husband. I really hope you manage to get out of this situation and get on the right track to getting your life back, best of luck my friend!
 

sunshine44

Que sera sera
Messages
1,131
I'm so sorry to hear that you're going through these horrible times with your husband being so ignorant and unsupportive. We sadly live in a society where we are tought that life is whatever you choose it to be and that anything bad that happens to you is always your fault, but in reality that's completely untrue and no one should me made to feel bad for circumstances they never chose. And certainly no one bedridden with CFS should ever be treated like this, I'm saddened to hear this.

I hope you have other friends and family around you that are supportive. And if your husband is behaving like this and can't handle the responsibilities of caring for you, not to mention your children, he should at least get some counceling and anger managment lessions. And if he can't do that and won't change, those responsibilities should be handed over to someone who can genuinely care for you and wants you to get better. Someone who makes you fear for your life, leaves you at their mercy, yells abuse at you, makes fun of your illness and victim blames you in the worst days of your life is NOT a husband. I really hope you manage to get out of this situation and get on the right track to getting your life back, best of luck my friend!
Thanks. Its a mess.

I cannot imagine treating someone with cancer, AIDS, etc. like this? I am even CDC positive for lyme they found in hospital in 2017 but for whatever reasons my family still thinks I can think my way out of this, and I do believe our minds are greatly beneficial in helping us....but not cool to keep telling someone you are destroying the family etc. for an illness you never chose. Its medieval type behavior.

Unfortunately my parents feel like lyme/cfs is psychological in nature too :( Its wild, I would have NEVER guessed my family would have reacted to me being sick this way. I was the woman that always brought family together, planning get togethers and uniting our family....just surreal.

I have had a huge friend support network, they have been helping care for me since June 2017 and are getting a bit worn out themselves as this just has been relentless....but am very grateful for having a huge supportive friend base.

I refuse to go stay with a friend because I need my children and they need me.

One day, I hope no human being should have to go through horrible situations like this. One day I pray modern medicine can care for us and rehab us util we are better <3
 

MEPatient345

Guest
Messages
479
How awful..
Have you spoken to a divorce attorney.. could you find out what you would be due as far as splitting assets and alimony if you or he were to leave? It sounds intolerable. If he left you, maybe depending on what state you are in, might be better for you legally.

And once you left, maybe you would qualify for social security supplementary insurance, not same as SSDI and not based on income. Check out https://www.howtogeton.wordpress.com/
The girl who runs this blog, Lily Silver, also has a Facebook disability group with tips on getting benefits.

Am hesitant to suggest jobs / careers since you sound severe, and I am severe too and know I couldn’t manage anything. But, I guess online hourly work..
Have you looked at Upwork? https://www.upwork.com/
Or mechanical Turk for Amazon.. (pretty sure this is super low paid)
https://www.mturk.com/worker
 
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sunshine44

Que sera sera
Messages
1,131
Thank you so much.

Due to my situation and condition I am unable to leave house for that type of thing and could not handle the stress of it either. I cannot yet sit up by myself for super long yet. Me and my children love this house and given I do not have a job right now, my options are limited. So, I will deal with that chapter later.

Just looking to empower myself. Thank you. I am going to look at those links.
 

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
I love that focus, @sunshine44
Empower yourself. :thumbsup:

Self-acceptance. Self-compassion. Self-value.
These are NOT self-centered. They form the basis for us to find some inner peace and our inner strength, upon which the rest of our interactions can stand.
It is beneficial for those around us, not just for ourselves.

It helps you with both your own coping, and with any possible priorities setting, decision-making, as it comes along for you, and it helps you toward your children too, and as a model for them.

When we give ourselves the respect, and compassion, kindness and acceptance, that we wish for from others, then
other things become more clear. And you can then make very small yet VERY significant, positive statements or actions, to your children. And in front of them.

Also a good decision to spend time with others who DO give those things, kindness and respect and acceptance for you, including us.

Very glad you are here. You influence us for the good, as well.
:hug::hug::hug::hug::hug:
 

sunshine44

Que sera sera
Messages
1,131
I love that focus, @sunshine44
Empower yourself. :thumbsup:

Self-acceptance. Self-compassion. Self-value.
These are NOT self-centered. They form the basis for us to find some inner peace and our inner strength, upon which the rest of our interactions can stand.
It is beneficial for those around us, not just for ourselves.

It helps you with both your own coping, and with any possible priorities setting, decision-making, as it comes along for you, and it helps you toward your children too, and as a model for them.

When we give ourselves the respect, and compassion, kindness and acceptance, that we wish for from others, then
other things become more clear. And you can then make very small yet VERY significant, positive statements or actions, to your children. And in front of them.

Also a good decision to spend time with others who DO give those things, kindness and respect and acceptance for you, including us.

Very glad you are here. You influence us for the good, as well.
:hug::hug::hug::hug::hug:
thank you for the encouragement <3
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
It makes me so sad to think of anyone in this situation. The one you need the most is being the biggest "shit" to you. It's not fair. I am so sorry this is happening. Are you unable to go to counseling, for yourself, in this situation? It sounds like you may be too sick to do so.

It's very hard when one is so sick to make money. I know that @Dainty at one time had some ideas. I am hoping maybe she can impart some wisdom onto you.

I feel for you. I really do and I send my love to you. I went through something like this with a parent and my siblings were even worse. It was awful.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I wish I had something to suggest as I've kind of been there (but without the abusive husband thing). I had much trouble getting onto disability pension and even at one point before I tried to get a disability pension was trying to support myself on doing only 15hrs of work per week or less, which at that point of time was all I could manage... all that did is I lost any savings I had and got more and more in debt. Supporting myself properly with ME/CFS was just not possible

I was too terrified at the level of illness I was at to fight an unfair system to get what I should of been getting but in the end I had no opinion but to do just that. It took me 3 appeals and things to be taken at the top most level to get a disability pension.

Pushing yourself to get some kind income by working is likely just to end up making yourself worst and you may be left completely unable to care for your children. I hate to say it but with severe ME and a family you are trying to look after, you are unlikely to be able empower your way out of it. I tried so hard to get through things that I ended up bedridden for about 9mths with my 9-10 year old than having to became a child carer to me and her younger disabled sister.

I'm wondering if you appealed as much as possible the knock back you got. Trying more to get government financial support may be the best way to go even with as hard and as stressful as fighting a system which just wants to reject you is.

I wonder if you would be better off actually if that abusive husband left and maybe that would make it easier to gain the support payments you need but I really do not know.

(maybe it would also help if you put what country you are in in your posts). Any way .. reading your post is scaring me as I wonder just how realistic you are being about your situation if you are as bad as it appears by your post. I completely understand what you want to do but it may not just be possible. I just want to say do whatever you have to do to protect what health degree you have now which may mean leaving that husband IF that is going to enable you to get a disability pension or other help
 
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andyguitar

Moderator
Messages
6,595
Location
South east England
Well @sunshine44 it's a pretty tricky situation. I am from the UK so am not very familiar with the US Social Security system so would suggest you go to an advice centre to see if you would qualify for State/Gov support if your husband leaves. It is he who should leave your home not you. You have done nothing wrong. Dig your heels in and stay put. Your husband is not much of a man in my opinion.
 

sunshine44

Que sera sera
Messages
1,131
I wish I had something to suggest as I've kind of been there (but without the abusive husband thing). I had much trouble getting onto disability pension and even at one point before I tried to get a disability pension was trying to support myself on doing only 15hrs of work per week or less, which at that point of time was all I could manage... all that did is I lost any savings I had and got more and more in debt. Supporting myself properly with ME/CFS was just not possible

I was too terrified at the level of illness I was at to fight an unfair system to get what I should of been getting but in the end I had no opinion but to do just that. It took me 3 appeals and things to be taken at the top most level to get a disability pension.

Pushing yourself to get some kind income by working is likely just to end up making yourself worst and you may be left completely unable to care for your children. I hate to say it but with severe ME and a family you are trying to look after, you are unlikely to be able empower your way out of it. I tried so hard to get through things that I ended up bedridden for about 9mths with my 9-10 year old than having to became a child carer to me and her younger disabled sister.

I'm wondering if you appealed as much as possible the knock back you got. Trying more to get government financial support may be the best way to go even with as hard and as stressful as fighting a system which just wants to reject you is.

I wonder if you would be better off actually if that abusive husband left and maybe that would make it easier to gain the support payments you need but I really do not know.

(maybe it would also help if you put what country you are in in your posts). Any way .. reading your post is scaring me as I wonder just how realistic you are being about your situation if you are as bad as it appears by your post. I completely understand what you want to do but it may not just be possible. I just want to say do whatever you have to do to protect what health degree you have now which may mean leaving that husband IF that is going to enable you to get a disability pension or other help

Thank you for your concern. I have a lot of fear already so I am working on seeing things from different angles as much as possible. I am not in an abusive situation. Just a husband that mentally checked out, hes not up for this.
 

sunshine44

Que sera sera
Messages
1,131
Well @sunshine44 it's a pretty tricky situation. I am from the UK so am not very familiar with the US Social Security system so would suggest you go to an advice centre to see if you would qualify for State/Gov support if your husband leaves. It is he who should leave your home not you. You have done nothing wrong. Dig your heels in and stay put. Your husband is not much of a man in my opinion.
Yes, I have already decided this even though I have no income coming in. Children and I are staying here. I am not saying hes had an easy role as a caregiver to a wife that could do most everything 3 years ago.....but he checked out in the beginning....so it makes it really difficult to excuse. He said he just can't do sick. Anyways, gonna focus my energy on funny stuff today and building my brain.

So tired of being scared of dying a slow death from all of this.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
If your husband blames you for getting sick, ask him how you managed to do it intentionally, or specifically what you should have done to avoid it. As far as I know, no one in the medical community can answer those questions at this point.

It seems like he's the one who needs psychological counselling, to help him accept reality. I don't see ME as being much different from getting shot by accident, or being injured in a car crash that was someone else's fault. I don't know how to convince him to get counselling, but maybe others have some suggestions.
 

sunshine44

Que sera sera
Messages
1,131
yes, I hear you. I had him watch Unrest with me last year, sent him articles, etc. but ultimately he thinks that I can get myself out of this if I try harder.

I am over trying to convince him. He doesn't want to look at facts.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
Well, there's not much you can do about people with strongly-held irrational beliefs. If that's the case, talk to a divorce lawyer. Maybe proper legal advice will make a difference in the support for you and your kids receive. Maybe you need to record what he says, because it might qualify as emotional abuse.

Nasty situation. If nothing else, a clinical test for ME might reduce the chances of victims getting this type of abuse.