Feel so ill, dh angry

[PulyaSochsup]

Have to come to bed again because I’m exhausted by painkillers which I’ve had to take because of fibromyalgia and Ehlers-Danilo’s syndrome. I try very hard to keep the house tidy and take the children out every day and I’m struggling. DH doesn’t do much, bare minimum for children in terms of attention and meals that are convenient for him. I can feel his resentment and hostility and it hurts so much.

My jaw and head are aching and have stabbing pains. My facial muscles and those in my limbs feel so heavy, much more so than with fibromyalgia but my go just puts it down to that. It’s a new symptom but it just seems that whenever I try to tell people they get irritated. I’m just feeling sorry for myself I suppose but I really do feel rubbish. I’m going to try to rest a bit and then take the children out. I don’t really know why I posted but I needed to release it somewhere 🙁

I use b12 and vit d patches ordered from amazon as I don't seem to absorb tablets. I think some difference but no cure.

Physio I've had a lot but to no avail to be honest. I can get relief sometimes for 24 hours and then I do all the exercises but it doesn't help but I'm sure it must work for some.

Just seen your post OP. These are serious conditions and not ones you can just carry on regardless with! You'll wear yourself into the ground.

Is there any support available out there? Could you approach social services about any options? Holiday clubs for the kids to give you a break?

Your DH is a selfish dick - who watches the person they love suffer more than they need to?! Horrible. does he even understand your conditions? Because he really sounds like he doesn't. Could you try counselling? He needs to understand the support, both physically and emotionally, that you want and need.

I will try anyway Guiloak, it has to be worth a go. Sorry it hasn’t worked for you 💐.

I have tried youth groups etc but dh won’t always drop them off or take them any distance. Every time I ask him to do anything he starts grumbling about how he needs to get his work done. I asked him to close the bedroom curtains last night as I can’t manage them and he left me sleeping in the chair with my coat on! I’m going back to bed until 8.30am.

Social Services have been no help, they helped us to put a plan together to help us but my health’s got worse since. If he does as I ask I always seem to pay heavily for it.

I have decided that when my youngest has done his first year in secondary school I will leave. Social Services know only too well that I can’t manage on my own and dh can’t manage the children on his own and so at least if I wait he should be quite independent. I am trying to teach him how important that is now.

I have also applied for pip and I’m hoping to try to save some of that to get away eventually and start again. Thanks so much for replying Simple 💐

OP
Please talk to Womens Aid.
Your husband's behaviour is cruel and abusive.
Leaving you to sleep in a chair is dreadful.

Endof, are you sure they’d listen? I feel like it’s my own fault for not going upstairs but then he did say he was coming back down and I waited for ages. I have something I need to do today and then I’ll ring Women’s Aid tomorrow. I just don’t want my family splitting up for the sake of me not being well 🙁

Yes, they will listen and they will understand.

Hi OP. Just wanted to check on how you're doing? Did you call women's aid?

I also have Ehlers- Danlos of the hyper mobile variety.

I can completely sympathise with brain fog, exhaustion and all the rest.

I just wanted to sympathise and confirm that yes , your DH is a dick.

Mine has spent the past 6 months since my diagnosis was confirmed reading all about it on the EDS website, downloading podcasts etc. He's even more invested now our oldest has also been confirmed as having it.( and as it is genetic - have your kids shown any signs?)

He did have some problems mentally adjusting to it, as I am in a fairly solid downhill slide with mobility and pain- and we had a bit of struggle with him thinking he'd be able to pick up tasks around the house ( and me not accepting his pathetic efforts as good enough).He didn't want to shell out on a cleaner - but he eventually realised he was being daft. It did take me cleaning the bathroom then spending 2 days in bed medicated to the eyeballs, recovering from the experience for him to get it.

A good EDS aware physio can help and if you can, a regular Pilates reformer class can do good things helping to build strength so your joints aren't doing all the work the whole time.
I've had some very positive results with the exhaustion and brain fog by cutting all wheat products out of my diet - this is the case for quite a few EDS folk on some of the forums I follow. The difference is notable - so that might be worth a try.

Hi Simple, I didn’t ring because I’m worried about Children’s Services, they didn’t really help before and they can be so critical. The bottom line is that my husband always seems so hardworking and like such a good father to outsiders. When I tried before to say that he wasn’t doing any thing they wrote that the parents were failing to work together. It’s something of a Catch 22 situation. I need to do something though 🙁

Hi Wakeup! Most of my children have signs, the youngest definitely has, it was confirmed by a paediatrician. Your DH sounds really lovely. If someone truly wants to help it is obvious. Mine just doesn’t care, which is what upsets me most. Thanks for validating what I thought, it just seems so utterly niggardly and stingy to refuse to offer any care whatsoever. He sits with the children while I rest, but that’s all he does. DS is at least hoovering whilst I sleep, which is something.

I feel so alone and that makes things worse. I definitely need some physio and blood tests though. I am scared because my health is really quite bad and I feel there’s only me to look after myself and the children.

Cutting out wheat sounds like a good step, DD is gluten free any way so I will just eat the same as her. Thanks so much for your kind post and for sharing so much with me 💐

Womens Aid won't contact childrens services. They are there to listen and support women. They will understand about your husband. If you read the other threads in relationships, there are soooo many men just like him. You are not alone.

Thanks Endof 💐

Hi PulyaSochsup.
Apologies if any of the info below is preaching to the choir , but thought some of it could be useful.

Just wanted to add - when you get a referral or go to a physio make absolutely sure you see one who has experience with treating EDS. I've had to work through 4 before I currently found one who knows what she is doing. Many physios operate on the basis that they need to release muscles in the affected area. This can be disastrous for folk with EDS as our muscles work overtime to hold joints in place, because our ligaments and fascia are useless .
For me, every time that has happened during a treatment , it has resulted in a destabilisation of the joint, which in turn has lead to the joint sublexing which meant I was worse off.

You need to build up muscular strength in a big way before a physio attempts release treatment. I have improved SO much with Pilates. I had a hip that repeatedly popped in and out, stairs ( going down was frightening with my pelvic instability) and I got regularly dumped on the ground when my hip gave way. This no longer happens as a result of Pilates.

Have you looked at this site?
www.ehlers-danlos.com , as they have lists of practitioners and in the community forum , there is a fair bit of info about practitioners who are experienced in this illness.

And if you'd like , feel free to PM me. It' a shit of an illness and I've been through ALOT of trial and error to find what helps. I don't have fibromyalgia , but may be able to help you avoid falling into the pitfalls I did.

Can't help with your husband, but I do know that stress can bring on a flare - he's probably doing more harm to you physically with his lack of help and general arsholiness than you release.

Also re jaw - you may have dislocated it......and it trapped a nerve when it popped back in.