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Spoons! Support thread for CFS, ME & Lupus sufferers

(938 Posts)
Grockle Mon 24-Dec-12 23:30:26

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.


Spoon Theory here

ArbitraryUsername Mon 18-Mar-13 16:05:22

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.

fuzzpig Mon 18-Mar-13 16:36:04

That's good news arb. smile

I am seeing my manager next week to officially discuss reduced hours. So I need to make a decision about what I want by then. But I said I couldn't handle any full days before then so I won't be in - not sure what she thought about that but oh well it's the truth. I just can't do it any more.

Apologies for the cliche but basically, my 'get up and go' has got up and gone. sad

Getting a bit sick of antibiotics as they are different from my usual and I have to schedule food around them. Mostly my appetite has been down lately and I don't generally recognise what you are all saying about the amitryptiline making you hungry, but for some reason my appetite is insatiable today, I am on a major sugar/carb fest.

Grockle Mon 18-Mar-13 19:41:31

I never have a full night's sleep, Arb. The ami helps me fall asleep but I am often awake 2, 3 or more times each night. I'm glad your managers are being so supportive & sensible. That makes a huge difference.

Good news about your friend, smiling.

I went to work today, feeling shit. I talked to my staff & they all looked down & mumbled 'ok' a lot & said nothing more. I don't want to talk to them any more. My head of department is being supportive & another person involved with my team has backed me up. I don't want to be rude to my TAs but I don't have the energy to waste on figuring out what they'll do behind my back. Then, when I was reminding myself that I only needed to get through today & could call in sick tomorrow, Ofsted decide to pay us a visit for the next 2 days. So I can't be off. I feel so utterly shite. angry

ArbitraryUsername Mon 18-Mar-13 23:13:31

Oh no grockle. That's crap about ofsted. Just what you don't need.

DS1 (who hasn't been sick for years) has just vomited everywhere: bed, carpet, everywhere. So I've been cleaning that up. I've had to clean up everyone else's sick and I bet I get sick tomorrow (or perhaps tonight; I am feeling ever more queasy, but it might just be paranoia) and have to clean up my own. Gah.

justtired Tue 19-Mar-13 10:16:25

Hi all.
Sorry everyone is having a hard time lately.
Im going to see the cfs specialist this afternoon, im so tired though i dont want to go, how ironic!
Im worrying about going because ive been putting all my hopes on that they will be able to help me sort my life out but i bet it wont be like that.
Im trying to think of things I should mention and any things i should ask but my brain is like cottonwool today sad

buildingmycorestrength Tue 19-Mar-13 11:28:45

Justtired, it is soooooooo helpful when you have to go to an appointment that is half an hour's drive away, fifteen minutes of walking through a hopsital, half an hour of sitting upright waiting because the consultant is late, etc. You have to rest all day afterwards sometimes.

I often start writing things down several days or weeks in advance because I can't rely on my brain once I'm in there.

I hope it is helpful.

justtired Tue 19-Mar-13 13:05:51

That's exactly right building!
I feel knackered before we have even began and I was a little too eager to get here so now have to wait ages and just want to go to sleep!

I'm hoping it will all come to me when I'm in there confused

ArbitraryUsername Tue 19-Mar-13 13:29:56

At least you will certainly be exhibiting all the problems caused by CFS by the time you get in there. wink

buildingmycorestrength Tue 19-Mar-13 13:48:48

Yes, I did feel a little smug when once I had to lie down for the consultation because I could no longer sit up. They were a little shocked.

"I told you I was ill!"

magso Tue 19-Mar-13 14:33:21

Grockle hope the Ofsted inspection goes well and does not leave you too exhausted. Hopefully it will unite your staff in support.
Justtired hope the appointment is helpful. Smiling hope things have settled down.
I do not seem to be doing too well at losing weight, but often do the quickest food rather than the healthiest.

belleshell Tue 19-Mar-13 16:45:26

Eeeeeekkkkk AU hope you dont get too ill,
How did you get on today Grockle?
What did you do about work Fuzz?
How was clinic just tired?
and hi to everyone else!!

ArbitraryUsername Tue 19-Mar-13 19:35:08

I got ill in the middle of last night. However, I hadn't really eaten anything all day (having felt queasy) so it was much less dramatic than everyone else's. I also take loads of painkillers every day (whereas I have to persuade H that he has a fever/is in pain and should take something to help with that and stop moaning ), so I probably got some relief from some of the symptoms. If only the painkillers worked as well on joint pain!

I hope you made it through the first day of ofsted, grockle.

How was the CFS appointment, justtired? Did you manage to stay upright?

H and I had another counselling session today. It was hard going, particularly for H as it was mostly about his negativity and how it affects everything. This was originally the reason I told him to see a therapist (and at the time he'd decided that it was definitely over so I wasn't even trying to salvage anything, just making a suggestion so he might actually be able to be happy at some point) and it is a big issue. I'm glad it wasn't too much about me though, as I am still feeling pretty rough and exhausted enough as it is.

Grockle Tue 19-Mar-13 19:48:04

Sorry you got ill, arb. It sounds like it was inevitable but I'm glad it wasn't too awful. Good re counselling too.
How was the specialist, justtired? I have a list on my laptop that I add to when something new crops up. That way, I always have a list of symptoms/ problems/ questions available if I have an appointment.

Fuzz, how're you? What did you decide today?

I've given up trying to lose weight, Magso. sad

How's everyone else?

Thanks for the good wishes. One of my TAs hugged me & said I knew it wasn't them because I knew they wouldn't do that to me. That they'd just tell me to my face. I told her I don't know what to think any more. I suspect it wasn't them but I don't know. OFSTED was ok. I feel like shite so wasn't at my best (I never am any more) but it wasn't awful.

I now feel utterly broken. Empty & broken.

ArbitraryUsername Tue 19-Mar-13 19:54:38

I'm so sorry grockle. You've done amazingly well to make it through today. Of course you weren't at your best; you shouldn't have to been at work at all! Any kind of performance is amazing given the circumstances.

justtired Tue 19-Mar-13 20:56:17

Sorry ive only skim read the messages tonight as im exhausted.

The appointment was good actually. She confirmed that I did definately have CFS again, i had the 4 main symptoms and all but one of the variable ones. Having had it before I knew it was that but good to have an actual diagnosis i guess. The doctor was lovely and assured me its not all in my head and it isnt something lazy people get which was a refreshing change to what some people believe. Im now going to start group CBT and graded exercise and also see her one to one, so hopefully this will help make life easier.

I know I asked before, and unfortunatley it seems to be mainly unsuccessful but canI ask how you apply for DLA? Do you have to go through the doctors or apply yourself?

Grockle Wed 20-Mar-13 07:02:14

I'm glad it went well, justtired. What were the 4 symptoms she was looking for? I'm interested in the difference between cfs & fibro.

I hope the cbt & graded therapy helps.

Saltire Wed 20-Mar-13 07:39:35

I don't come on here very often - mainly becasue i can't keep up grin.
But I am feeling so ill and down today. I have Fibro, have odne for years, but just recently the flare ups are getting more frequent and worse. latest one involves severe swelling of fingers and toes - to the point where I can't wear my rings and can't use my hands or feet. Also the fatigue is back with a vengeneance and is getting me down. i was managing it quite well then before Christmas took a really bad sinusitits infectionw hich seems to have set me back about 5 years
<feeling sorry for self>

ConfusedPixie Wed 20-Mar-13 08:41:42

smiling: apologies for the tmi but: have you got wet wipes? Helps a lot with the sore bottom! I used to be like grockle and pee all of the time and it stopped my front getting sore too blush I get really painfully windy after some foods and need to go to the bathroom for it sad

Interesting to hear that somebody else had the drops of wee constantly though, I was constantly rebuffed by doctors for that saying I needed to train my bladder but never any explanation as to how!

magso Wed 20-Mar-13 08:53:17

Hi Saltire and welcome. Sorry you are feeling so ill. I have had a lot of trouble with sinusitis (and weeing all the time Pixie) but have done a bit better since endoscopic surgery last year. Your poor digits!

magso Wed 20-Mar-13 08:56:16

Smiling and other sufferers may I suggest vaseline or baby cream? Agree with the wet wipes. HTH.

Saltire Wed 20-Mar-13 10:11:33

Magso - it is wearing me down and not helping to my overriding feeling of illness hmm.

magso Wed 20-Mar-13 12:09:47

Sinus infections are very draining Saltire. If you suffering regularly from sinusitis it might be worth asking to see an ENT specialist and get a CT scan done. I am working on the principal of getting as well as I can. My CT scan showed a structural problem and inflammation, and I do think I have been better since the surgery (and specific ABs to tackle the infection). I still have CFS of course but overall I am a little improved for being able to breath more easily! Have Lupus(SLE) and RA been ruled out for you in the past?

belleshell Wed 20-Mar-13 14:13:01

hi confused, i had to re train bladder after a prolapse, i was told i needed to mearsure my wee, and aim to hold it till i pee'd at least 500ml each time........this was resolved after going back to work ( on wards) where i need the bladder of an ox.

Hi [waves] everyone!!

icepole Wed 20-Mar-13 14:55:17

Sorry have not been keeping up. Work has been bad. I was told today I am to do a full time table from next week despite telling them that I have been struggling this week.

I feel quite distressed. Anyone got any tips on surviving?

fuzzpig Wed 20-Mar-13 16:22:08

The only tip I have is to get signed off sick sad

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