Any experience of cfs and being a parent?

[Thesofaismyfriend]

I have recently been referred to a consultant for cfs. I have been suffering for months but it only really clicked recently that there is more to my tiredness than having small children and the Doctor agreed.

Initially I was relieved as it meant that I wasn't just being pathetic but now I am faced with the reality of it I just don't know how to be a good parent. On my good days I want to make it up to the DC and be amazing, but have to pace myself and tire so easily. On my bad days I am either in bed all day, or can just about cope on the sofa but can't entertain the DC (4 and 2) at all. I feel like the tv does all the work and I just throw easy, non healthy food at them to keep them from being too fed up.

Does anyone have any experience of this? I don't know when the appt with the Consultant will be and I am pinning all my hopes on the appt being magical and fixing me (I know this won't really happen but can't face the prospect of accepting that this is my life now!)

www.mumsnet.com/Talk/disabled_parents/2050855-Spoonies-friendly-support-for-anyone-with-chronic-pain-fatigue

I was diagnosed 18 months ago. If I'm honest I didn't find the diagnosis itself that helpful apart from giving my condition a label and allowing myself to rest more because I realised I wasn't just lazy.

It's horrible when you can't entertain the children or be as energetic as you would like to be, but that makes pacing all the more important so that you are able to have some stability (in terms of energy) for your children. I hope that comes across kindly!

Be kind to yourself :)

The CFS consultant will probably look closely at your symptoms and at what tests have been done and what still needs to be done to rule out other causes of your symptoms (such as thyroid dysfunction, cortisol anomalies and many others. Once that has been done then its a case of learning how best to manage the illness.
I would try not to pin too high a hopes on this appointment, although tests may show up something that can be treated. For me that didn't happen, but I have got slowly less ill.

I just wanted to say thank you - I have only just found this (was looking on theads I'm on, not started).

I actually have my appointment this week after deciding to go private. I am so fed up after a Summer holiday filled with lots of rest days. It is my DD's birthday today and after a really busy few days adrenaline couldn't keep me going and I had to go to bed this afternoon. It makes me so sad that I can't snap myself out of it.

I do so appreciate your comments, and knowing that you understand how I feel. I don't want to be 'lazy', and in my dark moments I do feel like that.

Will check out the link to the other thread now, thanks.