Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

No news need - FFS

Hi all and to pfl and pixie. Well today I hope I feel some kind of human.I've been in bed since friday afternoon for no apparent reason,(by which I mean I don't know what I have overdone to make me feel like this) muy mum came yesterday took one look at me and gave me a hug... Must have looked rough she didn't even have her glasses on. So after she went I took more ami and went to bed. I felt terrible because DP kids are here for wend.let's hope today I make it down stairs xx

belles snigger at 'she didn't even have her glasses on...'. You know it is bad then!

Hope you feel better soon.

Welcome pain

fuzz I just love the way NHS can't get letters out in less than three weeks. LOVE.

Welcome PFL, sorry you have to join us & that you are so poorly atm. Please, moan away - we all understand and that's what this thread is for. Goodness knows, I moan all the time.

How are you today, Belle? Thank you for your card. It made me smile - you are right about everything.

And how's things with you, building? Where's solo gone?

I feel hideous - shivery, hot, clammy skin, goosebumps, so bloody tired & generally slow & stiff. I need to go to work tomorrow to face the music but I think that'll be all - a day in to sort stuff out & then home to bed. I feel tottaly let down by work & I don't see why I should continue to go & make myself ill when both my team & management are shit. If I had an alternative, I'd tell them what to do with their job.

Oh grockle :( hope it's as painless (both literally and metaphorically) as possible.

I'm not decided about tomorrow but tbh I think all my fight has just... gone. Only a few weeks back I was all "I'll try going in" every night but now I just want to hide away, it feels pointless trying.

On a lighter note, we got a free sofa delivered today from a friend's parents. We will be getting the old falling apart one picked up by the council at some point but right now despite having even less space in our tiny tiny living room I wouldn't mind keeping both so there will always be space for me to lie down or sleep

grockle thank you for the surprise I got in the post yesterday, I have been really poorly all weekend and have only just got up and looked at the post.

Hello to everyone old and new

Hi all.
I'm worn out after a busy weekend of activities for ds. Dh (who tends to do the active things with ds that boys need to do) has been unwell and is now away again, so I have had to manage pre-arranged activities and am now flagging. Supposed to going to pilates tommorrow - don't know if I will make it.

Grockle so sorry you have this extra pressure on - last thing you need. Hope it goes better than you espect tommorrow.

I hope everyone who is iller in winter has had theirvit D levels checked as low vit D can add to our symptons.

I feel the same fuzz but probably for different reasons. I've been pushing myself to go to work saying 'I'll try' every day & have managed just about but what's the point? Enjoy having two sofas!

You're welcome, smiling

I've been asleep on the floor all afternoon and am now in bed. I hate this.

I need to ask a tmi question so I'm just going to apologise now does anyone else suffer from ibs?

I've spent all day rushing to the bathroom, it's definitely not a bug it happens regularly but it's so tiring and to add to the already indigent nature of my endless symptoms I now have a sore bottom

I need to ask a tmi question so I'm just going to apologise now does anyone else suffer from ibs?

I've spent all day rushing to the bathroom, it's definitely not a bug it happens regularly but it's so tiring and to add to the already indigent nature of my endless symptoms I now have a sore bottom

smiling, I generally don't have problems like that - I never have but it's happened twice this year. Awful cramps, sprinting to the toilet... it was not pleasant. I don't know if it is related to everything else I have or if I was just unlucky & got 2 stomach bugs within weeks of each other. I have no advice, I'm afraid, other than to add it to your list of symptoms. And try a baby wipe if you are sore. I seem to have piles though

Not the same but TMI from me... My period started today & I have been rushing to the bathroom because of that. I don't know why it's changed but it's as if someone has turned on a blood-filled hose. I need a bucket, not a mooncup

I have IBS symptoms but pretty mild really - nothing worth bothering a doctor about. It's only been in the last couple of years - same as the CFS, and I know they do go hand in hand. Stress is a trigger - I get worried, I need the loo.

Although more often than not I am pretty sluggish in that regard, I am sure that is lack of exercise though.

Yes, I am sluggish too. I should probably keep a record of when I, um, go. I can't remember the last time - several days, at least.

Fuzzpig: a free sofa is always good. Our sofas used to be my mother's. my parents bought them in 1986. They are really quite ugly (very pouffy), quite big and the leather is well past it's best (it has split on one of the seats) but they are incredibly comfy. I often have a nap on the couch.

Grockle: I hope tomorrow is OK. All this extra stress at work is probably making you more ill, and you really don't need that. It's a shame that your managers can't understand that by pressurising you and making you feel badminton, they're actually making you less able to work.

Smiling: sorry about your ibs issues. I'm never sure what's going on with my bowels (all the medication I takes tends to mess with things) or my bladder (I have to pee all the time these days, and some of my medication makes my urine pink). H developed ibs during his phd (he likes to manifest stress physically) and had to eat an annoyingly restrictive diet (no onions!). I'm not sure the diet made much difference, and it cleared up once he'd finished and moved on.

DS2 is feeling better now. He went from being very poorly to running around like a mad-preschooler very quickly! H is actually DS1's stepdad (but DS2's dad), which explains why relations are more strained than they should be (but does not excuse it). H has been better with him all weekend. They had a great time playing arcade games and bowling, and H has pulled back from always nagging him.

I am meeting the deputy HoD tomorrow to talk about everything. She is very nice, but I don't know how it will go. OH are still assessing me (and the advisor was very keen to stress that I am not OK to just pick up a full workload, by a long shot). I feel guilty about it, but I have to accept my own limitations. It's frustrating, because I am intellectually abolutly up to the job and could do it fantastically, but physically I just can't cope with everything. There are so many pressures from all directions and I just can't do it all. It doesn't help that H is always going on about how little he's achieved this semester (more than I've achieved in the last 3 years!) and how easy it is to do all the things expected of academics (which I have not managed to do). I don't think he means to be an arse about it, but he just does not realise how hard things are for me.

I'm also usually sluggish. Some medication seems to make it worse than others. (Tramadol was a total nightmare in every way for the bowels).

Lovely conversation tonight!

I used to have to wee all the time too. I'd desperately need to go but when I went, there was only a drop or two. Then, 5 minutes later, I'd be deperate to go again. It settled down when I was put on diuretics (for my meniere's) and even though I don't take those any more, it's stayed ok.

Thanks for the support, Arbitrary. I hope your meeting goes well tomorrow.

Yes, lovely conversation I blame the Tramadol.

IME you can blame tramadol for anything. When the OH advisor asked why I'd been off I said that they decided to put me on tramadol and she replied that I need say no more.

Oh! Maybe I should stop taking tramadol again to see what happens. I've reduced my ami over the past few days & that's helped a lot with wanting to eat shit.

Stopping ami really reduced my wanting to eat shit too. Both my GP and the OH advisor both said that tramadol is something you can either tolerate or not. It's a great painkiller but for quite a lot of people it's just intolerable. You'd probably know if you were in that camp.

But still, blame it for stuff; it's better than blaming yourself!

H has now come down with what DS2 had. It's pretty grim. That means I'll have to take DS2 with me tomorrow. I knew this would happen. I've booked a train that'll get me back here for about 5, but I'm a bit worried about it being delayed. Actually, if it is I can probably ask a friend to get him from nursery. Anyway, no point worrying about it until morning.

smiling, my answe might be TMI but are you constipated, if so you can get overflow what is loose.... sorry ( as a nurse bowels are our lunch time conversation so ask away!!) i am the complete opposite and can go 10 days, i have to take laxatives but i sont take on a regular basis because i cant!!!.

Grockle, I hope today was ok, and you have come home straight from the meeting, no matter how much we try we are just a number usually when employed, its our own personal morals that make it hard for us not to go to work. AU i hope your meeting goes well too.

I have come to a conclusion after a weekend in bed, that if i am to work the 30 hours, i cant do anything when i come home from work, last week i was busy.... well for me, vets after work monday, worked over wednesday, supermarket thursday andguide drop off, and then that was it....bang i hit that wall, i also stoped ami for 2 nights which from a sleep point of view was a nightmare, i didnt sleep for 2 whole nights so i am back on them, i have some time off over easter, i will try again.....they make me fat and sluggish!!!

I haven't made it to work. By the time DS2 and I got to the train station I was feeling decidedly queasy so I decided against getting on the train. H was up all night (and so was I even though he's sleeping in another room) vomiting and generally feeling awful. I find fancy getting sick like that on the train with DS2. So we're back at home and I'm going to do my meeting via Skype (so long as I haven't actually gotten sick by that point).

DS2 is watching the clone wars and H is acting like he's dying. Tbh, he certainly does feel utterly awful so I don't think he's exaggerating. I'm hoping that my queasiness is just paranoia. It usually takes me about 24 hours longer than H to catch whatever DS2 has decided to share with us, but I never seem to get it as badly as he does (probably because feeling really crappy is my default position anyway, whereas illness is a shock to his system). DS1 never gets ill though. He has the immune system of an ox!

I think I'll have to go back to my GP (yet again) to try to do something about my sleep. I haven't had a full night's sleep in a long time. I don't know what they will give me. I had ami before and it didn't prevent me from waking up several times a night.

Belle I'm not constipated, I was diagnosed with Ibs about 4yrs ago, I know my triggers and avoid them but sometimes I just go through stages of having lots of attacks and can never figure out what causes them, yesterday was awful but today I'm fine.

I wonder if it's stress about my surgery on Monday.

On a happier note my friend who has been staying with us since the 1st Feb has found a house and will be moving out on the 28th, she's a great friend but with dp home with his back I'm more than ready to have one less adult in the house

It probably is stress. Completely understandable stress. It should be lovely I have your house to yourselves again. It is so difficult to completely yourself when you've of guests (no matter how well you get on).

My phone meeting went well. My managers are really lovely and reassuring. They seem to want to support me. The deputy HoI said that I am not allowed to talk or think about what I 'should' be able to do; it's about figuring out what I can and making best use of my skills within that. I've had most of my workload parked for a while, which is great. And for the next academic year we can plan something more manageable that I ended up with this year.