Mary56

Thanks Sally. I have been referred to one of these and am due to join a self management group next week but I feel too ill to go at the moment, which is so frustrating 

I had occupational therapists and they came to my home because I'm virtually bed ridden. You could ask them to do that?

Yes my husband has an OT who comes to our home too.

really helps ..

I do feel for you being virtually bedridden Georgia. That must be truly awful. I hope that 2015 might be a good year for you and that your symptoms will improve. CFS is a really horrible condition. 

For me brain fog is the worst symptom. I miss feeling the fresh air in the mornings, and it makes me feel as though I'm in an oppressive twighlight zone. Utterly horrible!

Herbs help but nothing I've tried actually relieves it fully, apart from sometimes drinking white wine, which makes me feel great for a while, then of course worse afterwards.

I sympathise with you George. Like you, I love fresh air and walking but haven't been able to have much of either lately. It's hard to get others to understand as there is nothing physical to see! 

Sorry Georgia for calling you George! 

I do push  myself too hard sometimes George. Whenever I feel a bit stronger I tend to then do too much though I'm not aware that I'm doing it at the time! 

I know. It is difficult. Practice helps for it is a matter of judgement.

Somtimes I weigh the effort needed and the importance of the task and decide to do it because it is worth the days of payback. 

It all has to be very calculated and dliberate

You're right George. Just hard to get into that habit!

Yes Mary, that's one of the hard things about this illness, people not understanding. I read a couple of research reports about ME in an academic website, and I was fuming at the the things it said. Such as leaning towards it being more psycological than physiological. It's astonishing that they could still think that! 

Dear Mary, 

I wish you all joy in persevering and succeeding.

George

Yes I know. I just wish blood tests would show something significant. There is obviously something in our bodies that isn't working right. Just wish they could find out what it is! 😳

And you George 😊

Psycological ! ! ! I'll psycological them. The last consultant I was refered to near the end of my ten year misery, was the Professor of Psycology at a major university. He saw how hard I had to work to put my thoughts together and form and speak the sentences. He did not treat me as a psycological case. Instead he wrote several letters to the lung consultant who had caused the problem in the first place (by not diagnosing the cause of the chronic fatigue, brain fog and memory problems AND  not changing the medication when it did not work.) letters begging him to STOP The treatment. He refused each time. So I told him I would take no more of his pills. He was not pleased, proud impudent man.

Lol on I'll psychological them! I'd like to give them ME for a day, then see what they think! And they'd have to work that day. Gawd I'm evil. 

My old doctor pushed me to go on antidepressants including Prozac but I refused to take them. I told him repeatedly that I wasn't depressed but would he listen! 

That emoticon next to me being evil was supposed to be the little devil; I clicked it but the sad face came up! 

I'm a bit confused George (nothing new there then). Why and how would a lung consultant diagnose the cause of chronic fatigue?

O Georgia, how I hate doctors with a big mouth and no ears. It seems to be common complaint with them, poor things. 

Good point Georgia. Initially he might assume it was Sarcoidosis. A bit extreme given the mild extent of the Sarcoidosis. Since the treatment was not working and causing harm refer me to a clinic that deals with chronic fatigue.

My GP at least thought the fatigue was serious. He told my wife I would be dead within two years.  For ten years I wished I were.

I'm very glad you don't wish you were now George! You're a bright light in the forum, and come across as a lovely man. You deserve to live. 

Yes Mary, and brain fog makes it so much harder. I found that brain fog = no pleasure in anything, just grey misery. So motivation to strive for improvement very difficult. I imagin it is even more difficult if living on your own.

Perhaps Georgia would be kind and comment on that for us.

Yes doing things when you live on your own is very difficult, like cooking etc and my home is always in a mess.

On the plus side we need rest and it's more peaceful alone, I can rest and sleep when I need to without disturbance. Also this hermit time is healing me from painful past experiences. Plus it's making me stronger, and being self-reliant is a positive skill to have. 

When I go out occassionally, even to the doctors, or for anything I really enjoy it, probably far more than other people do, I appreciate things more now.

I feel very satisfied and pleased with myself when I've cooked a meal or done the washing or something, and I even say to myself 'good girl', or 'well done!' It's not patronising because it's me who's saying it!  And it's better to focus on what I have done rather than on what I haven't done.

It's by no means all gloom and doom!