DH ME / chronic fatigue syndrome diagnosis imminent

[happygelfling]

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.

I am sorry to hear of your DHs illness and hope his illness does not develop into CFS. I agree with Squirrels and other posts above. Get help where you canard look after your own needs. Once other causes are ruled out , if it is CFS, rest is central to not getting worse. Using the spoons analogy, in the early days, all of those will be needed for the basic functions such as eating and washing, but once there is a little more energy, try to use those for enjoyable things - such as laughing with you or playing for a short while with the children- rather than trying to answer work emails or help in the house.
I developed CFS/ME after a long hospital stay with pneumonitis 10 years ago. The first year or two were difficult for us all, ( the not knowing what was wrong especially as I did not have a diagnosis for years) but we gradually adapted.
I think it helped to feel more in control -by stepwise following a plan- the first part of which was rest! ( suggested by the lung specialist). That meant not pushing myself and ( as the main carer) getting longer term help with DC ( a combination of after school clubs and care at home) and housework. I started to improve slowly once I accepted that I needed to rest and learnt to pace myself properly. DH modified his work pattern, ( he had been working away from home a lot- and working very long hours when at home). I eventually returned to work on reduced hours and changed my contract to reflect that. I am much better now- but I still have CFS and still have to pace - but using the spoon analogy have quite a lot of spoons nowadays- rather than the couple in my illest days!
Your comment about your DH only eating part of his dinner brought back how exhausting eating can be !
With a histology background I found the book by Sarah Myhill called something like ‘It’s mitochondria not hypochondria ‘helpful, although it might be rather out of date now. It was useful for others in the extended family to read too. I informally followed Dr Teitelbaums (sp?) SHIN (E) protocol ( Sleep -Immunity-Hormones -Nutrition-(Exercise). The first of the SHINE protocol to start on is to improve sleep and rest- the very last after recovery is well underway- is carefully paced exercise.

There have been advances in understanding ME and CFS in recent years and as I no longer need to be up to date!

So in answer to your question- If your DHs condition is longer term, yes you will need to modify aspects of your family life- and that may include adjusting your work pattern to suit. Don’t forget that you may be able to get carers leave ( unpaid) or as a carer request reduced hours. In the longer term there may be benefits to help- but it is difficult to get things like PIP for CFS. Carers allowance for instance is only available to those that care for a disabled person AND earn below a certain low wage.
Take care of yourself and I wish you all well.

Thanks again for all your support and suggestions. It really helps.
DH went to see the doctor again and she diagnosed a chest infection (on top of the general fatigue that he's had since August) so that explains why he has been quite so exhausted over recent days.
She (different doctor this time) had some other ideas too, and she was interested in the Lyme's disease possibility, but wants to get this chest infection shifted first as it may be difficult to identify other things with that in residence.
She is going to refer DH to ENT and Respiratory clinics for investigations. (I'm not clear about what these investigations are.) We are lucky that my job includes some medical cover so we should be able to get him through these investigations relatively quickly.
I'm trying to focus on looking after the children - DH pretty much has to fend for himself but if I can look after the children then it gives him more space to recover. It's our half term this week and fortunately I had booked it as holiday so I've been taking the children out every day to give him time to rest without our very active children jumping all over him. I'm going to take the children with me to stay with family this weekend. Lots of freezer meals available for DH. Hopefully he will be feeling a bit better when we return after the antibiotics have had more chance to kick in.
Looking after myself comes someway down the list. (Doesn't it always with motherhood?) I have some good friends for emotional support, and you're helping on this thread too, thank you. Time off is more tricky... Using a bit of childcare is a good idea, but the children strenuously resist it because they'd rather be at home. I am not very good at asking for help from others. I have a demanding part-time job which I can lose myself in to take my mind off things. My employer is supportive of carers and families. So I'm in a very lucky position in many ways. I am just struggling with the idea of the children missing their "real" dad. Our DS said, "Daddy, I want to go back to our summer holiday because that's when you weren't poorly." And my heart was breaking. It's only been just over 2 months really... What happens at 6 months? 24 months?!
I think that getting rid of the chest infection may triple his number of spoons, but he will still only be on less than a tenth of his "normal" quota.
He's going to look into the various supplements and approaches that you've all suggested to see if any of those help too.
Hopefully the various clinics will find something curable!! (Desperately clinging to that hope!)
Thank you all again for your support and ideas.