Took to huge sporting event

[Ravenblue3]

I guess i did.hes been quiet but four once I’m trying to do better and not responding. He said sorry i think not much else.i just cant fight anymore.does that make sense’? He’s tried to come watch tv with me , its so awkward i shamefully said no. He left.I’m not sure what’s the right answer but weve always fought and i cant this time.i have no idea all this is coming up

[Ravenblue3]

He says he cares, actions say no or to me….i want to feel safe and love again.is this wrong? Maybe i need too much, maybe I’m weird i mean look at the illness, I’m not sure on anything at all

[MsJayne]

3 hours ago, Ravenblue3 said:

As to my illness, there’s many diagnosis.its autoimmune plus a lot of extras lets say as sort of personal

I could be way off target here, so please forgive me if I'm wrong. I have a close friend who claims he has a condition which makes him allergic to pretty much everything. Something to do with histamine levels in his body, the symptoms are apparently varied and can take the form of headaches, the sniffles, aches and pains, nausea, and so on. No GP has diagnosed him, he diagnosed himself via Dr Google and then took himself to an alternative practitioner, (medically unqualified), who I think saw him coming a mile away. He's had this thing for about three years and it's caused him to lose a lot of contact with people because of how it's affected his behaviour. Example, he says he's allergic to scents, so if he comes to your house you have to remove anything which has an aromatic scent, like flowers, candles, etc, he requests that you don't wear perfume and don't wash your hair that day,  don't use any cleaning products, and on and on. While you're preparing dinner he'll be over your shoulder checking ingredients to make sure you're not poisoning him.  He also likes to talk about his illness, and lectures you about putting toxic substances into your body. I care about him, and I wish I could help him, but at the same time I am sick to death of hearing about it, and of pandering to it, and because of certain circumstances, I find myself wondering if it's all in his head because he has suffered from depression for many years, and sometimes I feel like snapping at him and saying something mean to jolt him out of his self-absorption. If I was around him every day I know I would have. So, my point is this, your husband probably cares deeply for you and wishes he could fix your illness, but it's also having a very negative impact on his life as well as yours. He probably feels very drained by it too, hence he made a cruel comment during a peak moment of his frustration. I agree with others above, you might benefit from therapy and the chance to talk about some things which are bothering you. If you're on Prozac I assume you have a mood disorder, which can sometimes go hand-in-hand with psychosomatic illness. Please don't take this as me saying you imagine your illness, but I do note you haven't given it a name, and physical illness often manifests when a person has long-term depression. 

[d0nnivain]

11 hours ago, Ravenblue3 said:

I guess i did.hes been quiet but four once I’m trying to do better and not responding. He said sorry i think not much else.i just cant fight anymore.does that make sense’? He’s tried to come watch tv with me , its so awkward i shamefully said no. He left.I’m not sure what’s the right answer but weve always fought and i cant this time.i have no idea all this is coming up

If you have an autoimmune condition, you can't "do better".  This is not something in your control.   Both of you apparently need to understand that 

 

11 hours ago, Ravenblue3 said:

He says he cares, actions say no or to me….i want to feel safe and love again.is this wrong? Maybe i need too much, maybe I’m weird i mean look at the illness, I’m not sure on anything at all

You are reading some of the signals wrong a little bit.  He did say he was sorry.  Then his action -- trying to watch TV with you you -- was an indication that he cares.  Instead of sitting with him & just being together, you claimed it was too awkward & pushed him away. In essence he viewed that as you rejecting him. 

As ill as you may be sometimes we need to see things from the other person's perspective.  You can't control your illness but you can control how you respond to your husband.    

Why did you shut him down when he reached out?  If you aren't open to him, things can't get better.  On some level you have to meet him half way.  

Something else is really wrong here when you aren't trusting your own mind.  

True love meets the other person where they are.  It requires us to accept how our partners are loving us, not get mad because they aren't expressing that love in the exact way we want.  It does run both ways & your DH needs to be more realistic & understanding regarding your health.  

[pepperbird2]

Op,

A someone living with the wonderful combination of systemic scleroderma, sjogren's and lupus, I hear where you're coming from. You are not alone in how you feel. You can't help flares, and when they come ,they can hit hard. I went from snorkelling in Belize one week to being home in a hospital the next.

I can relate to the sheer exhaustion and the frustration you're feeling. It's actually pretty common for people living with an autoimmune disease to experience depression ( not just sadness) along with the pain, and then there's the mental "fog" , fear for the future and guilt at feeling like you're a burden. It's no wonder you're feeling the way you do.

I'm assuming you're seeing a rhumatologist who has experience in treating individuals living with your illness. That's so important, especially as many diseases in the group can be really hard to pin down, which is essential to getting the right treatment. I can't speak for others, but the drugs used to treat the symptoms ( for me it's Imuran, omeprazole, Hydroxyquinoline, sildenafil) can also leave you feeling exhausted.

None of this is your fault. You didn't ask for this, and it's far worse for you than your husband. That being said, spouses of people with a chronic illness often find they need support as well. Is it possible for the two of your to find a counsellor ( even a virtual one) who has experience in helping couples in your position? There's also social media groups that can be very supportive. I'm in a couple, and it's helpful to know I'm not alone and there's others out there who understand. That's so important, especially as a lot of autoimmune diseases are relatively rare, so chances of meeting someone with one isn't very high.

One poster above mentioned sitting down with your husband to talk this all through. Let him express his concerns and fears, and you do the same. Try and set up a "go to" backup plan for when you have an event to attend, and most of all, be kind to yourself. We all do it, but it's such a waste of your precious energy to be down on yourself.
 

[Ravenblue3]

We’re just quiet, no talking

[Ravenblue3]

To all, my diagnosis autoimmune as looking at lupus for past year now have fibro, hashimotos, severe ortho issues, ulcerative disease, it’s, and on and on .oh i have tremors lately that get worse with anxiety so now i get checked for parkinsons I’m 49. Mentally I’m treated for depression and anxiety , not a mood disorder. I thank everyone.i hear you in i pushed him away.i just didnt want to be hurt.i mean he said i make him miserable now rewrites it , kind of. I went to bed under covers, cried silently went to bed.there’s nothing he doesn’t care. I’m in a bad place. For the poster sharing her lupus experience, thank you so much ill pray for you as i get it. It’s so hard. Today will be difficult.i want to shake this but cant. Maybe its me.if so I’m sorry

[Ravenblue3]

For the poster with a friend chronically ill, thank you for sharing. I know it gets old hearing. I wish i didnt have it .i want to see from his perspective.ive tried to forgive him for leaving five years for an overseas job to get away from it. I try to not even say when i hurt now, sometimes if a flare there’s no way to hide it.

[d0nnivain]

Are you sure he left for 5 years to get away from you & your illness or did he leave to take the best paying job he could get so he could afford to support the two of you?  

[Ravenblue3]

“True love meets the other person where they are.  It requires us to accept how our partners are loving us, not get mad because they aren't expressing that love in the exact way we want.  It does run both ways & your DH needs to be more realistic & understanding regarding your health. “ yes, youre right.i need to lower my expectations, understand better my diagnosis, and accept.I’m trying. It’s been many years, two marriages to him.i have to ask am i happy. I want my marriage but I’m sadly not.

[d0nnivain]

What are your expectations?  You have said you don't feel loved or safe.  You feel lonely.  What specific behaviors from him will make you feel loved?   Until you identify exactly what you want & tell him you won't get it.  He can't read your mind.  You have to spell it out.  

In my marriage I told my husband I need to 

• kiss hello & good-bye
• say I love you on every phone call 
• be held when I'm upset 
• spend time together 
• have date nights
• Give & receive cards for occasions / holidays & have him make a fuss on my birthday & for our anniversary
• Get & give "surprise" hugs & kisses because he's walking through a room 

 

Because I was specific & gave him concrete things he understood he fulfilled my needs.  If I just told him vague things like I need you to love me more / better / differently we probably would have split up by now because that vague plea didn't give him any insight into me & he might have thought leaving me alone for long stretches was him expressing love because he is an introvert who craves solitude.  If he did that I would have concluded he did not love me.   This is why clear communication is important.  Despite being an introvert, DH has learned he likes some of those things & they are important to him too

[Ravenblue3]

As for leaving his exact words one just one occasion was “I’m leaving to get away from you and your sh**” other times he’d leave for airport while sleeping i called where are you..hes at an airport saying I’m not coming home and hangs up…just lots of stuff so that’s how i get at that

[Ravenblue3]

Ive said needs, and to overtly love. I can try again more specifically.it may happen for a day it goes back the same way even if we try. I’m seriously debating going home as we are in a neighboring state in a corporate apartment.I’m not happy. There’s no concern .hes selfish.i dont know what to do.i know this is toxic hurting my health and i feel worthless with him.I’m very sad and let down.I’m sorry but i am

[stillafool]

9 minutes ago, Ravenblue3 said:

I’m seriously debating going home as we are in a neighboring state in a corporate apartment.I’m not happy.

This might be a good idea to help you get away from the stress so you can rest.  Maybe you both need a little break from each other.

[Ravenblue3]

It’s sad, but maybe

[Ravenblue3]

We’re speaking its all fluff in writing in person its like I’m garbage so ya know what’s my options.i feel trapped for insurance and scared but i know this isn’t right

[stillafool]

15 minutes ago, Ravenblue3 said:

.i feel trapped for insurance and scared but i know this isn’t right

Wouldn't you still be on his insurance plan if you moved back home?  

[Ravenblue3]

Oops

Edited June 23, 2021 by Ravenblue3
Two posts

[Ravenblue3]

Until we divorce i guess. The texting now is horrible. There’s no accountability.i feel like I’m in a well screaming for help and no one hears .I’m broken its frustrating.I’m scared alone its hard right now i swear in the beginning of all i just tried to do something nice.

[pepperbird2]

14 minutes ago, Ravenblue3 said:

Until we divorce i guess. The texting now. There’s no accountability.i feel like I’m in a well screaming for help and no one hears maybe

This is terribly sad.
OP, please reach out to someone in real life to help you through this. A good friend, relative or even a crisis line. It can really help i would also ask your doctor if there are any support groups in your area or online that you can reach out to. It helped me a lot. It was so good to talk to people (online) that actually know what systemic sclerosis. sojogren's and lupus are. There's people with Hashimoto's, MCTD and other AI illnesses in them as well. We share tips for getting through the tough times or just vent. One of the truths about autoimmune diseases, or I suppose any chronic illness, is that it's hard to go it alone. It's really important to build a support system you can call on when things are hard.

About your spouse, I'm not sure what to say. I know it;s not easy being married to someone with a chronic illness, but his treatment of you is extremely unkind ( and that's putting it mildly). Have you tow attended any counselling together? If not, it could be helpful.

(btw, tremors can also be autoimmune related. Your doctor can help you figure out the cause. It may not be parkinson's at all. the good news is that if they are autoimmune related, Immune globulin IV infusions can really help)

Edited June 23, 2021 by pepperbird2

[Ravenblue3]

Thanks, yes its sad.i feel broken. As for support , i dont have any.ive been isolated so long. This is what i have right now and trying to use the space to just air.

[d0nnivain]

OK with more detail he does sound uncaring.  Stop texting.  It's the worst form of communication anyway.  

[stillafool]

1 hour ago, Ravenblue3 said:

The texting now is horrible.

Why do you continue to text him when it's causing you so much pain?  You said earlier you feel like moving back home well do you have family there or close by there?

Edited June 23, 2021 by stillafool

[Ravenblue3]

I dont know why i texted him back, youre right its pain. I’m embarrassed i did. Ya ever have a day youre not ok, this is it for me,I’m taking it minute by minute.i hear all of you with support, i just dont have any and so wish i did right now.

[d0nnivain]

You don't have to be embarrassed because you are seeking love & comfort from your husband.  

You may help yourself by recognizing he is not capable of giving them to you so then you can start to seek validation from healthier places.  Do you have any family who can emotionally support you with a phone call or video call?