ME/CFS Clinic

Hiya everyone, thanks for your support. we’ve just got back from the ME/CFS clinic and they’ve told hubby they can’t treat him because of his mental health issues.

So what is the point in these so called specialist services if there just going to turn round and say we can’t deal with your issues.

I’m getting so frustrated at the fact that no one is helping hubby and just saying they can’t help. Meanwhile he his mental and phyical health is declining more and more each day.

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Easier said than done; the full story

A neurologist recently told me that I should take better care of myself and find time away from hubby, just to do something for myself.
This is something a lot of people having been saying to me and if hubby was getting DLA this would help towards getting me some respite. But the DWP and ATOS are still saying there is nothing wrong with my hubby. They keep saying he’s not a risk of falling and doesn’t need constant care. God knows how they’ve come to that conclusion.

So anyway, at the moment there is no real way I can get any respite. Hubby’s family are scattered and the members of the family that do live nearer (still an hours drive!) work all the time. We have a friend that has offered to help, but he lives even further away and has his own health problems too!
I do seriously need to find a way of getting a break because my health has now been affected. The whole reason I was at the neurologist was because back in July I passed out and collapsed to the floor! Poor hubby had to drag me across the floor and lift me onto the bed. No idea how he managed that.

My doctor had me tested for epilepsy and also sent me for an MRI, but both of these came back clear. I still feel like I’m going to pass out, so she referred me to the neurologist.

After asking some questions and giving me a quick examination, he told me that stress was the cause of my health problems. He kept stressing to me that I need to do something for myself and get some kind of break from caring for hubby. He also said that in all his time at doing his job he’d seen a lot of people who are carers having stress related health problems. He said he sees it a lot in people who are caring for someone with long term chronic disorders like ME, Fibro, etc. He also said that I seemed like a very caring a compassionate person, but do really need to take care of myself.

I knew I was stressed out but didn’t realise the extent I was stressed out! I also kept saying to myself that I’m just a bit run down and I’ll be ok if I watch some TV for an hour or so. I’ve been and have dealt with stress before but it has never affected my health to the extent it is now. The neurologist is right, I do need to care of myself, but I feel guilty when I do something for myself or try and have time away from hubby.

Just this week I was in bed all day with a serve migraine and just felt guilty not being able to take care of hubby the way I should be. The neurologist did say my migraines were more than likely caused by stress and he has prescribed me Pregabalin for them.

To all you other carers out there remember to take care of yourselves and try not to feel guilty about it. I do sometimes think people forget about the carers. I also think we carers forget we are human too and need support and time for ourselves. If we get ill, how can we care for the person we’re supposed to care for?

I know this is easier said than done, because there is limited help out there, but we need to care for ourselves.

Take care 50mg capsules


Easier said than done

Been told today by a neurologist that I'm nearly passing out and having migranes because of the stress I'm going through. He also told me that I need to take better care of myself and find time for myself. Easier said than done when I'm not getting the surport I should be getting (DWP are saying hubby is o.k) which he is not. Just wish the family wasn't so scattered. I do however need to do something or I'll be no use to hubby.

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