The (not so old) Crocks Cafe -Part 2

LadyMorticia

Does anyone here have M.E/CFS?

I'm going to an outpatients M.E clinic thing at the moment and alot of it is filling in activity diaries and setting baselines, pacing and resting. The trouble is that the M.E is getting worse at the moment so I'm finding things really hard.

I went today and have been given 5 hours of high activity to do a day. It has to be broken up but I've been so ill lately that I'm struggling to do alot.

LameWolf

LadyMorticia wrote: »

Does anyone here have M.E/CFS?

I'm going to an outpatients M.E clinic thing at the moment and alot of it is filling in activity diaries and setting baselines, pacing and resting. The trouble is that the M.E is getting worse at the moment so I'm finding things really hard.

I went today and have been given 5 hours of high activity to do a day. It has to be broken up but I've been so ill lately that I'm struggling to do alot.

Yes, I've literally just been told I have it, on top of my lupus - only today, my GP emailed me an information leaflet that is so devoid of information as to be laughable. No idea where to go from here. *shrugs*

However, if anyone suggests that I fill in a diary, they are likely to get said diary poked somewhere the sun don't shine!

5 hours activity a day??:eek: I'm lucky to even get my housework done, let alone any "high activity" - best of luck! (Not being sarcastic, I really do wish you luck, and hope that you soon feel a bit better):o

The_Dragon

5 hours a day activity with cfs! they are lucky if they get 5 mins from me :mad:

Trialia

Thanks, all of you. I will miss her; she was a sweetheart.

LM, congratulations on the house. I have fibromyalgia rather than ME, but they're symptomatically very similar.

formaldehyde_perfume

I'm having a brilliant time if I can get five hours of 'high activity' a week!

You sound like you're struggling LM, if you think talking might help then I can call you. I get tonnes of minutes with my plan and I barely use any of them. It would be nice to catch up

On a personal note, I just went to a charity strip night which was so funny but not for the shy or faint hearted! There was a 'comedy' drag act and compare, he was quite !!!!!y at people but then when the raffle was being announced and I won (woooo!) he said "oh it's someone on the cripple table" *sigh* It didn't upset me and in no way ruined my night, but it was just unnecessary and below the belt. My friends sister is chronically ill with stomach problems and their mum was in our group tonight, she got quite angry on my behalf as it would have upset her disabled daughter.

I hope everyone's doing alright, I am a little bit too drunk to read through what I've missed here, I'll try and catch up at some point

LadyMorticia

LameWolf wrote: »

Yes, I've literally just been told I have it, on top of my lupus - only today, my GP emailed me an information leaflet that is so devoid of information as to be laughable. No idea where to go from here. *shrugs*

However, if anyone suggests that I fill in a diary, they are likely to get said diary poked somewhere the sun don't shine!

5 hours activity a day??:eek: I'm lucky to even get my housework done, let alone any "high activity" - best of luck! (Not being sarcastic, I really do wish you luck, and hope that you soon feel a bit better):o

The_Dragon wrote: »

5 hours a day activity with cfs! they are lucky if they get 5 mins from me :mad:

Trialia wrote: »

Thanks, all of you. I will miss her; she was a sweetheart.

LM, congratulations on the house. I have fibromyalgia rather than ME, but they're symptomatically very similar.

I think it's because high activity for me are just what might seem like small things to other people - getting dressed or brushing my teeth for example and all the little things build up the hours or something.

The thing is though that I have alot of appointments so can be out for a quite a while which is high activity and then be bed bound for the next couple of days because I physically can't do anything other than lie in bed with my laptop (my only sense of social interaction sometimes).

LadyMorticia

formaldehyde_perfume wrote: »

I'm having a brilliant time if I can get five hours of 'high activity' a week!

You sound like you're struggling LM, if you think talking might help then I can call you. I get tonnes of minutes with my plan and I barely use any of them. It would be nice to catch up

On a personal note, I just went to a charity strip night which was so funny but not for the shy or faint hearted! There was a 'comedy' drag act and compare, he was quite !!!!!y at people but then when the raffle was being announced and I won (woooo!) he said "oh it's someone on the cripple table" *sigh* It didn't upset me and in no way ruined my night, but it was just unnecessary and below the belt. My friends sister is chronically ill with stomach problems and their mum was in our group tonight, she got quite angry on my behalf as it would have upset her disabled daughter.

I hope everyone's doing alright, I am a little bit too drunk to read through what I've missed here, I'll try and catch up at some point

I have a phone phobia.:o Not even sure what it is about it I don't like.

I have alot of CBT homework to do too, on top of the M.E stuff. Then there's us moving.

My CBT therapist says that I have to tell her if things get too much but I know that she's happy with my progress so that makes it a bit hard.

Trialia

LadyMorticia wrote: »

I have a phone phobia.:o Not even sure what it is about it I don't like.

I do, too, but I am - auditory processing disorder. I struggle to understand people on the phone, even though my hearing itself isn't actually that bad.

Today is a BAD day for me in lots of ways. Hurting like hell & can't stand for more than 30 seconds at most. Plus it's the anniversary of my mother's death, so...not a good day mentally.

I got some awesome stuff in the post this morning though, which helps cheer me up a bit and will work as a good distraction. Yay for friends.

LameWolf

LadyMorticia wrote: »

I have a phone phobia.:o Not even sure what it is about it I don't like.

Trialia wrote: »

I do, too, but I am - auditory processing disorder. I struggle to understand people on the phone, even though my hearing itself isn't actually that bad.

Me too; I'm as deaf as a flippin' post, which doesn't help, but why, !!!!!!, do I feel a panicky need to scarper from the room when Mr LW is talking on the phone to his pal? It's like ANY use of a phone in my presence makes me really scared.:( I put a lot of it down to the fact that people terrify me.:(

Trialia wrote: »

Today is a BAD day for me in lots of ways. Hurting like hell & can't stand for more than 30 seconds at most. Plus it's the anniversary of my mother's death, so...not a good day mentally.

((( Gentle HUGS))) Gods, I wish I was better with words than I am; I never know what to say - so will just leave it at (((HUGS))):o

LadyMorticia

Trialia wrote: »

I do, too, but I am - auditory processing disorder. I struggle to understand people on the phone, even though my hearing itself isn't actually that bad.

Today is a BAD day for me in lots of ways. Hurting like hell & can't stand for more than 30 seconds at most. Plus it's the anniversary of my mother's death, so...not a good day mentally.

I got some awesome stuff in the post this morning though, which helps cheer me up a bit and will work as a good distraction. Yay for friends.

I have no idea how I'm going to cope in our new flat. It has an entry phone system.

I think one of the problems is that I have to see people's faces when they're talking to me otherwise I freak out a bit. :L

Sorry to hear you're having a bad day.