DH has been unwell for three months. Our GP has ruled out everything else and we are expecting an imminent diagnosis of ME / chronic fatigue syndrome.
Today was a real eye opener for me about how life might be in our future.
We have two children: DD (8) and DS (5.5).
DH dragged himself out of bed, with a huge effort, for dinner this evening, ate less than half what he would usually eat, then had to go back to bed because the children were too noisy and he was too tired.
He is not himself. Usually he is the most active and engaged Dad and supportive husband I could wish for.
I feel very alone. I don't know how to explain this to the children. His parents just don't get it - they make unhelpful comments which imply they think he's making it up.
I have a demanding job which I love, but I am wondering if I need to reconsider...
Our family life is going to be extremely challenging if he can't contribute (time and emotional help).
Thanks for reading my offloading!
I would welcome any advice or suggestions about how to deal with this.
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General health
DH ME / chronic fatigue syndrome diagnosis imminent
happygelfling · 20/10/2019 01:13
I am so sorry. ME is horrific. 
for you all. It’s tough.
No easy answers, OP. It's a horrible illness which can devastate lives. I know a few people who have suffered with it.
On the plus side, most of them have made a significant recovery, although I don't think any of them would say that it has actually gone. The acute (i.e. totally debilitating) phase lasted between three months and three years for each of them, but they are all now able to live reasonably normal lives. They do have to pace themselves and take care not to overdo it as there is always a risk that they could relapse. Two of them manage to hold down a job.
Sadly, one of my former colleagues has been ill for several years now, with very little relief. She is generally unable to get out of bed, even for meals. She does have short periods when she is a little less unwell, but no sign of any longer term recovery as yet. I believe that she has found some alternative therapies somewhat helpful - acupuncture, if I remember correctly.
It's obviously awful for your husband but I think it's important to acknowledge that it's very difficult for you and the children as family members as well. Your whole life is turned upside down with this sort of illness. The only advice I can offer is that you shouldn't try to cope on your own. Ask friends and family for help. I ended up doing quite a lot for a close friend when her DH was sick, as did many other people. I think it was hard to ask at first, but actually, we were glad to be able to help out. You need emotional support for you too, because you will no doubt feel angry, sad, frustrated and lots of other emotions, so you will need to be able to vent sometimes.
I hope that he starts to feel better soon.
Spoons theory does explain stuff well. Your might like the original author's website too, which I think is called but 'you don't look sick'
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Has lupus been ruled out? I am not a doctor! But symptoms sound possibly similar?
Whilst your DH needs to focus on his energy and managing his health, you need to focus not on him but on yourself and the DC.
Can you afford help in the house? Cleaner, regular babysitter (so you get time out), etc.
You need to be mindful of your MH and set up as much backup as you can, put a structure in place, and then that will allow your DH the best chance to get better too.
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