Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

Aww smiling :( how frustrating. I really hope they can confirm something soon!

Building, that's a different type of vertigo that can be fixed by moving your head - it's a positional thing. Mine is not like that & can't really be made any better. They can give you diuretics & anti-emetics etc but they've not really helped mine. The tinnitus that goes with it is permanent although it can be fixed with surgery but that is likely to lead to permanent hearing loss. I'd rather live with tinnitus & mild hearing loss!

Sorry you may have muscular dystrophy. What a worry. I know little about it so have no idea about treatment.

Smiling, it is so frustrating, isn't it? How do they confirm Addisons?

By another blood test, they take blood then inject me with somthing then take more blood.

Aw, man, I was so sure I had an answer! I'm so sorry to hear that it is so hard to treat.

Smiling, the waiting for tests is just awful. I am really having to just stop myself thinking about it at all or I get myself in a right old twist. Are you struggling?

I was doing ok till I decided to google addisons disease now im a bit worried but to be honest im so worn down with it all I think it would be a relief to be able to say to people, "ive got addisons disease thats why im tired/dizzy etc" and they can treat it with medication for life so it isnt the worst thing they can diagnose

What a mixed bunch we are! I don't know anythying about MD, or for that matter Addisons although I have heard addisons is one of the illnesses that may need to be ruled out when CFS is considered. My ENT mentioned that I might have Meniers (the test for benign positional dizziness made me feel awful but did not elicit the diagnostic nystagmous). I agree standing still is extemely difficult, I just had not realised how awful sitting still is as well. I either lie down or sit with my feet up. At work I am up and down a lot. The mindfulness course Ive been attending requires sitting still, eyes closed with feet on the floor which makes me feel faint and ill. I may not continue. I am still not convinced it is right for me anyway.
Why are we all struggling? is it the cold/lack of sun shine? Extra ration of spoons needed I think!

What does the spoon thing mean?

See spoon theory-link on grockles opening post.

Spoon Theory for icepole

Hope everyone is ok, aside from worrying.

I had a nice morning with friends, walking the dog at a country park but had to come home to sleep. So tired... of being tired. I want my life back.

Have any of you seen this M.E campaign? I might make a little film & send it in.

We are a mixed bunch, aren't we? All with similar symptoms but a range of diagnoses... and lots of us have other problems too. I was reading something earlier about ME & the high suicide rate. I can see why

Ahh. Yes that is good. I particularly relate to the cost of things, one event means you can't do the next one type thing. Clever analogy.

Yep. I seem to have a spoon shortage today. I'm so scared about going to work next week.

Ooo, I thought you'd all be pleased to know that my frozen mash arrived last night! I'm really off food atm though, which has had the bonus of me losing a stone but means I don't like anything. I used to be a bit of a food snob.

Also, I now have an 11 year old Chinese girl living with me for 6 months. Not sure it was the best plan!

Just checking in as I had session four of group therapy just now. It was good but I feel a bit wobbly. I talked about the abuse a bit - not what happened but how it affects thought/emotions/behaviour as we were discussing the CBT model. We all went our separate ways straight after this time, and I know it is really irrational, but I feel like I scared them all off. Even though I know they had to get to work etc (and we had overrun anyway so no time for a quick lunch first). This is what scares me about having friends - I am terrified I will get dependent on them and push them away. We talked about 'inner critics' a lot though and I know that it is mine talking!

Hey fuzzpig, my guess is that they are probably impressed with you being able to be honest and vulnerable like that. Everyone has their secrets and hurts and not everyone is so brave as to take the step to talk about them. I do think opening up can make you feel vulnerable though so make sure you are being gentle with yourself tonight.

I start a phased return Monday, very anxious about it.

Hope everyone is ok. Belle & Solo haven't been around for a while.

Fuzz, I agree with Ice...look after yourself & don't fret about everyone else. I expect they were impressed with your openess & honesty too.

I am funny about making friends. In a different & I don't even know why. I love the idea of having friends but find it hard to actually have them. I tend to keep people at a distance because I fear I will get hurt. I have lots of acquaintances, people to go out with, to meet for coffee etc but very few that I'd call close friends.

Good luck on Monday, icepole. I have done NO planning whatsoever. I am feeling so ill with fatigue each afternoon, I don't know what to do with myself. It comes on suddenly & I feel ver very drunk...like I am going to be sick. It slowly subsides but it feels hideous & I have to lie down. I am really not convinced that work & fibro/ lupus/ whatever is compatible.

Thanks both. I am pleased I opened up - I am used to talking about stuff openly to some extent due to previous therapy, although I haven't done it in a group session before so that was a bit odd. I am being kind to myself - I travel through Victoria station and that means Krispy Kreme :o

I had some pretty messed up friendships in my teens at school and I think that's why I struggle now. I have a few friends particularly from college but I still find it very hard to open up.

I actually have a 'friend date' (frate?! :o) with a colleague who recently moved to my area from far away - she's had a couple of rough years too although for very different reasons. But I am SO nervous even though for the most part we will be watching a movie and not needing to talk etc. It is exciting to think I might have an actual friendship with someone near (we moved here in 2008 FFS) but I am scared!

Forgot to say, will be thinking of you both on Monday. I am nervous too, although it's going into my 5th week in a row. It's getting harder and harder to actually admit that I'm really struggling. But in some ways it's easier to go in now that I haven't had any time off. Even though what I really want/need is, erm, time off. Confusing!

Icepole what kind of hours are you doing for your phased return?

Ooo, yum. I love Krispy Kreme. When I lived in the US, there'd be Krispy Kreme 'restaurants' on the side of the highway. If the red arrow on the sign was lit up, it meant they were cooking the doughnuts. If you go in, all the restaurants have glass walls so you can watch the entire process...and they hand out free hot doughnuts while you waited to order I feel all nostalgic now!

Your friend date sounds nice. I miss having friends to do that kind of thing with. My best friend is thousands of miles away so I don't see her very often any more. I don't know many people here & I've been here since 2009 Most people round here have lived here all their lives though so they all have long-term friendships. I'm a newcomer. I'm not very sociable anyway, I suppose... I don't like going out & am often feeling so crap that I'd rather stay home in bed.

The work/ time off thing is a nightmare to juggle. You've done really well, fuzz.

The new Krispy Kreme in Gateshead has a glass window/donut cooking contraption thing too, and they hand out free hot donuts too. It also means that we can get an unglazed donut for DS2, who will not countenance a glazed one.

The drive thru makes it impossible to get out of the metrocentre car park when it's busy though, which is irritating.

solo

I might need a trip to Gateshead! It is a very long way from me though.

Three mornings the first week. My senior class are being verified so am very worried about that as they have done nothing while I have been off and paperwork has gone missing. My last verification was a nightmare so to get another in these circumstances is not nice at all. My higher class is in a mess too, there has been no cover.

I think it will set me back and I will just have to keep going. This is my fear, that and that by doing so I might do permanent damage to myself.

My class seem to do nothing when I am off. And paperwork goes missing... ALL my evidence for any progress, gone

I hope 3 mornings is ok for you... maybe it won't be so bad as you expect. I hope not anyway. Will be thinking of you.

I hope so too! I can't believe my seniors have done nothing for so long and they still expect me to get all their paperwork done at all never mind for verification.

My space has been trashed too but I'm just going to have to live with it.