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 🙁

[PulyaSochsup]

Just wanted moral support really.

[Horehound]

Well, for a start if you feel so bad then you shouldn't be going out with the kids. And I guess from the outside it looks like you are exaggerating because if people are really sick, you don't do things like that.
Get to bed, tell your husband to buck up.

[PulyaSochsup]

Thanks for replying Horehound. I’ve tried telling him before, he doesn’t speak to me for days and the children won’t get much. For a thousand lousy reasons I can’t leave, too outing and distressing to go into. I am a bit screwed really, I just need some emotional support. I really do appreciate your reply. I suppose it does look like exaggeration because I have had no choice but to keep going.

[Horehound]

This is so horrible. He is their father and needs to step up.

I feel sorry for you, you should be able to rely on him.
Are you sure you can't leave?

[PulyaSochsup]

It is, he’s ‘proved himself’ to those that matter. I can’t manage on my own fully and he won’t take care of the children properly, although he’s good at being seen to do so which is all that’s required 🙁. I will at least know that I really have done my best for my children, which is what matters really. I plan to leave when the youngest leaves home and if I bear that in mind then it’s not too bad, but when you’re tired and in a lot of pain it’s harder to do.

[Horehound]

How old are the kids?

[Horehound]

And what's he doing that's so important he'd rather not deal with the kids?

[rainbowruthie]

That all sounds so awful for you
Sending kind thoughts

[PulyaSochsup]

They’re 13, 10, 8 &7. He sits building ships or promoting his acting career on Facebook etc. He drives me mad but I try hard to tolerate it and tell the children that Dad’s either working or trying to relax doing his hobby . They’ll work out the truth soon enough, but meanwhile they can only really rely on me 🙁. Anyway, I will rest for a while and we will try to enjoy the sun. Thankfully the beach is very nearby!

[PulyaSochsup]

Thanks for your response too Ruthie.

[PulyaSochsup]

I managed to nod off and I feel less exhausted. I still have to get a shower and iron my clothes but at least the children are not being ignored if we go to the beach for an hour. Thanks to both of you ❤️

[PulyaSochsup]

Still pissues off. I managed to take the children out to the beach last night, it’s forecast rain for all day tomorrow so at least they’ve made the most of the good weather. I have been awake for 2 hours now stressing about things and I have just taken painkillers to try and sleep a bit longer. I feel like a working animal, at least they’re given enough food, rest and necessary medical attention to survive 🙁

[Loopytiles]

Sorry you’re unwell.

Your H sounds unkind and a poor H and father at best, and abusive at worst, eg showing you contempt and not speaking to you for days.

[Loopytiles]

Leaving IS your best option, no matter what the practicalities.

Staying in an environment like this is not benefiting your DC.

[PulyaSochsup]

Thanks Loopy.
I will be up them as soon as I can but thankfully they’re still asleep for now. I wish he’d do more for them that was in their best interests and not just what’s convenient for them. We’re part of an art studio that’s about 200 yards from the house so I’ll take them there after lunch, at least then they’re doing something.
He’ll have to manage for a while this morning, if I don’t rest I will be even worse and he has an appointment this afternoon that he wouldn’t dream of missing.
Thanks for replying Loopy

[TheBrockmans]

At those ages I would be fostering independence, certainly in the older two. On a chilling out holiday day I encourage mine to fix their own breakfast and lunch. Everyone tidies up their own mess (or at least is nagged to). Everyone including dh is responsible for bringing their laundry down and putting it away. The 13yr old can learn to cook some family meals, as can the 10yr old with some supervision.

Once the children are a little more independent (say when oldest is 16 and youngest 10) you would be able to manage without him as they can help you on days when you are unwell, they will be fairly independently able to get around and they are getting old enough to vote with their feet. Stay at mum's house and go for trips to the beach or at dad's and watch him build toy ships...

[endofthelinefinally]

OP, if you post in relationships you will get good advice.

I have a chronic, progressive illness and my DH has had to make huge changes to make sure he looks after me. I get very down about it, but he reminds me that we made vows and he wants to take care of me.
You would be better off separating, but I understand that you are going to need a lot of help to do it.

You can talk to Women's Aid.
Also, if you have not had your Vit D levels checked, ask your GP to do it, along with your Hb and ferritin.
My illness causes fatigue and weakness, but I was also found to have anaemia and a severe Vit D deficiency.
Taking iron and Vit D supplements did help.

[PulyaSochsup]

Thanks for all your replies and very good advice. 13 year old is pretty switched on so I will talk to him later and make a gp appointment.

[PulyaSochsup]

Thanks for the wonderful support everyone, I needed it. We’re going out to colour I’m at the art studio and then I think we’ll sunbathe. My go has put my prescription through early, there’s a 5 day wait here which is lousy if your memory is bad and nobody reminds you. I will have to get my son to put reminders on my phone and get used to checking. It’s doable, it’s just so hard. Never mind, moral support helps a lot. Thanks everyone.

[endofthelinefinally]

The other thing I do with my illness is to keep a symptom and medication diary.
I take as many drugs to cope with medication side effects as I do for my actual disease. I am currently juggling 3 different medications at variable doses. Once I find the best regimen my GP will put that on my repeat list.
Also in the diary is the repeat order reminder.
I email the pharmacy and they organise it all for me. They would deliver it if I needed them to do that, but currently I am able to collect.

Would a diary be helpful for you?

[Guiloak]

Just a hug as I had two kids and the same two conditions. It's hard as we have invisible illnesses and so I think friends and family find it difficult to understand they think we are lazy or making it up. I have now developed arthritis due to my EDS that people seem to understand more plus when I dislocate, just stepping off a train my knee dislocated. The general bone aching tiredness nobody understands. Also I can be great for a week then not able to move for two weeks.

It's difficult to stop when you have kids especially in the holidays. I often have an afternoon nap kids read/x box. I had to spend most of yesterday in bed as we went out on Friday.

I've found no medication helps, the side effects are too strong and I can't work/drive/function on them. What drugs are you on?

What DH still fails to understand is that I will not get better, if I can slow down the progression and keep out of a wheelchair I'm winning.

[Hecateh]

As well as vitamin D ask if they will check thyroid levels and B12 levels. After getting them checked, don't just accept them saying the are within limits, ask for a printout of your results. (you are legally entitled to get that) and then post on the health board with your full results. Deficiencies in these areas often go hand in hand with fybro and because many of the symptoms are similar drs just put everything down to your fybro. Pus few really know much about vitamin and mineral deficiencies as it isn't really covered much in their training.

[PulyaSochsup]

Thanks everyone, I didn’t see the last few posts. I will start keeping a diary.

I have an under active thyroid but I’m not sure about vitamin levels and iron so I will discuss that with my doctor.

Guiloak, thanks for the hug, it’s much needed and I am very sorry for everything you’re going through. I know it’s rough. Like you, I spent lots of afternoons last week taking the children out and I feel so rotten now.

I’m taking Gabapentin, Naproxen and Dihydrocodeine as well as levothyroxine, propranolol for my heart and citalopram. I think I’ll have a look at drug interactions too.

Thanks everyone 💐

[Chronicallymothering]

Just sending solidarity as someone with both conditions and 2 kids 9 and 5. My husband is amazing and I honestly couldnt do it without him. Have you been seen at the hypermobility clinic at UCLH? I've been referred for physio there and have high hopes for some active management solutions rather than just managed decline.

[PulyaSochsup]

I am in the nw but I will ask my doctor about physio Chronically, thank you very much 💐