Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

magso he has been referred to physio and to the osteo department at the hospital

Hello all. Just dropping by to say hi. Dreadful access up in Rugby, so not able to get on here. I'm exhausted and in pain and that's all I'm saying.
Hope you are all ok.xx

I think mindfulness is really helpful. Smiling, I don't think I could handle a friend

I'm shattered. I met a friend for coffee this morning & spent 2 hours chatting & bitching about work. It was good to vent a little!

This afternoon we took the dog for a walk. I am back to needing my stick & every step hurts but it was such a glorious day that I didn't want to miss the sunshine. When we got home, I blitzed the house & hoovered & tidied.

It is Imbolc, a festival of purification & a time to clear away any last things which may be holding us back as Spring approaches. We always do a bit of a spring clean and light some candles to honour the growing light so we can ask for blessings for the coming year and make pledges. Although things are a bit rough for us at the moment, I am looking forward to the future.

Blessings & spoons to you all

grockle she's a good friend and understands that I'm ill, she has been a great support over the last year and was about to become homeless so I said she could say.

So far she's cleaned the bathroom and cooked dinner as well as taken over all tea making duties for dp

Im shocked, after seeing the Dr last week, she said she would refer me back to the Rhuemy. usually this can take at least three months.

Got a appointment today for the 27th!

Good news, about the appointment.

And what a lovely houseguest. If she needs somewhere else, I have a spare room & live by the sea...

grockle if I get fed up with having an extra person here it will be dp I send round to yours

It's a bit difficult at times because my house is tiny (very small lounge, kitchen and bathroom downstairs) so with 3 adults and a dog it's a tight squeeze but hopefully it will only be for a couple of weeks.

megsdaughter good news about the appointment, I hate all the waiting for appointments its so frustrating when all you want is to see someone who can help and get better.

solo, fuzz and everyone else I hope your having a spoon filled weekend and not in too much pain.

I hurt all over and am spending the day in bed to try and get myself fit for work tomorrow

I am lazing in bed too- just to get fit enough for dh to go to work IYKWIM!
Good your appointment has come through so promptly Megsdaughter , hope they can help. Oh good to have a helpful house guest although I agree I would find even the nicest guest difficult. I will try to be more positive about mindfulness. I really want to get on to the next stage getting help from then physios and OTs as I have got very stiff but every time I try to improve things I either get a relapse or a facet lock up. It's all so slow, and the huge waits between appointments make it all so much longer than needed. Can you tell I am getting impatient?

I think we all feel the same about waiting for appointments, my endocrinologist works at my local nhs hospital and waiting times between appointments can be 4mths so I feel I'm not getting anywhere.

On the other hand my gynecologist works at a private hospital and appointments take 3-4wks so I feel I'm getting somewhere and less stressed about things.

I'm not moaning about the nhs they are overstretched and do a great job but I still find things frustrating and feel like if they were more organised I might actually get some answers

Waiting is a nightmare, isn't it? I always build my hopes up with each one, and spend the weeks leading up to it thinking, 'They'll give me a firm diagnosis & tell me how to get better & then it will all be ok.' And then, of course, it's very disappointing because I just get sent for more tests & am told that there is nothing they can do about night sweats, dizziness, pins & needs, numbness etc.

I'm really fretting over my atos medical too - mainly because I think they'll see that atm, I am fairly ok & not at my worst. I'm in pain but they can't see that.

"Patient advocate Bob Miller, who's on the experimental drug Ampligen, has been urging FDA to approve the medication for ME by going on a hunger strike. He's been fasting since January 29th: six days"

www.cfscentral.com/2013/02/hamlet-without-hamlet.html

Hi all, im here just lost the link for some reason, you all have so much on fuzz im so glad you find the group thing helpful, grockle when they do the assessment just be honest, its fantastic you have an assessment i just keep getting refuse, make sure your chair and stick and any other aids are visable, also write a diary of pain, sleep what DS has done (OR ANYONE ELSE) to help, how you feel in work etc, it just helps when they are asking the questions, Hi to megs, magso, solo, smiling and everyone else. hope your spoons are been kind....

im dreading the week ahead, as much as i am feeling ok, i have 2 40TH BIRTHDAY parties this weekend. one is my best friend and one is DP so we have to go!!

today i will mostly be saving spoons

Another spoon saver here today Belles - because today(until after school) I can. I hope you enjoy the celebrations and have enough energy saved.
Grockle I hope your ATOS assessor is perceptive. What is routine for us is not normal for healthy people, so it is difficult to remember the differences let alone not play it down. Tell him/her you are in pain, and how exhausted their visit will leave you and for how long. Good luck.

Hello All. Grockle invited me after I admitted I had lurked on and off. I am Mum carer to 1 DD aged 21 who has had severe CFS/ME for over 5 years and 1 DD aged 16 who has ASD, anxiety, Dyspraxia and also has a diagnosis of CFS/ME (although I'm not 100% convinced in her case). I really feel for you ladies because you're all looking after yourselves/children/holding down jobs and I really, really am gobsmacked at how well you all manage (I know you have no choice but it makes it very hard for you). I love the title of your thread - DD1 and I found this theory a few years ago now and it sums it up beautifully.

Hi chocaholic welcome

I need a lecture please on pacing myself, Im at work and I've crashed, I've managed to feed the children and sat them in front of the tv but I'm so tired I can barely keep my head up, I hurt everywhere and I feel sick.

It's my own fault, here's what I've done in the past week....

Mon - worked 7.30-6.30

Tues - worked 7.30-6.30 and went to pub quiz

Wed - took fil to day center, car to garage, dp to Dr, picked fil up, did horses.

Thurs - worked 7.30-6.30

Fri - took fil to day care center, picked him up, helped friend move

Sat - went shopping, did horses, cleaned out rabbits

Sun - did horses, cleaned the bathroom, changed bedding

Mon - worked 7.30-6.30, helped in charges school this afternoon, put away Tesco delivery this morning

On top of all that looked after incapacitated dp

What was I thinking?????????

Oh smiling. Gentle telling off for you :) not that you really need it - the pain of a crash is punishment enough isn't it :(

Welcome chocoholic :)

I am on the bus home trying failing not to cry :( did 8.30-7 shift today, I really didn't feel well enough - my cough has been really bad, it's making my head hurt and making me feel sick. I don't think I slept more than 30 mins at a time last night because of it (very unusual for me).

Anyway, I didn't want yet more time off because I have my interview (for part time post at work) tomorrow and didn't want another absence fresh in their minds. Although I've missed so much lately it may not make any difference really :(

Legs are agony this evening, I would've sat down on the pavement by the bus stop if I'd had any hope of getting up again. It's just been too much today.

Fuzzpig and smiling so sorry you are both suffering. Gosh your week sounds busier than an althletes day Smiling.How is your DP doing? Also struggling today but I have not been a to work - I/m still recovering from my one short day a week last week - how pathetic is that? I get tearful when exhausted - nearly happened today - I made a mess of the shopping and H was annoyed although he is usually pretty tolerant of my forgetfulness and double purchases. Even ds (ASD so not usually perceptive of these matters) noticed I needed to sit down!

Welcome Chocoholic. Your poor DD's. And you

Fuzz, hope you have a restful evening. Hope all goes well tomorrow. You work very long hours.

My lovely DS has started saying things like,'No mummy, sit down. I'll get it for you. You're poorly' I love that he's so considerate but it makes me weep inside that at 7 that's how he has to think.

I am mourning the loss of my DP. I think I need to finally accept that he's never coming back. I've been very slow to realise & stupid in the past to let him leave repeatedly & then let him back. He was so lovely though. And such a help.

Hi Chocaholic, welcome its nice to have you here but under didfferent circumstance would be far better, Good luck tomorrow fuzz,

Grockle mourning a DP is hard but just think of how much u can really plan things now and not be let down, you are so lovely that when your ready im sure Mr Right will be there. and you never know that might just be a recovered DP.

Hello to everyone else...xx

Thanks for the welcome all. Expecting a call from our local carers group for an advice call where they talk through the issues that you are going through and make suggestions of who might be able to help. Not sure they are going to come with much new ... but you never know! DD2 seems to have some sort of virus ....just to add to everything else ... she suddenly got tummy ache on Friday lunchtime ish and has hardly eaten since. She is drinking well but doesn't feel well in herself, but it is incredibly difficult to work out what is ordinary viral illness and what isn't.

Grockle do you have a real life friend you can offload too about DP? Sorry you are going through this.

Hi all. Am completely out of spoons today. Can hardly get to the toilet. Have a sick son at home, but fortunately he is OK to just watch TV. Have had someone else take daughter to school and will have to arrange pickup.

Scary when it gets like this.

Woohoo I'm done. Don't think it went that well though. There are 7 people going for it and I am by no means top of the list of who 'should' get it IYSWIM (though not bottom either). So nothing to lose really.

Anyway I'm just glad I have a half day today and am off home now.

Sorry about your DP grockle. Am shocked he hasn't contacted you though... seems immature of him really. I think you'll see the positives of being let down by without him soon enough. xx

hI Corestrength,

wish i could send u some spoons, not that i have many left, well done fuzz, lets us know how it went, chocaholic hope DD feels better soon

x

Feeling a tiny bit better now after being horizontal for about 6 hrs :)

You're probably right, belle. Life is always so hard.

How is everyone?