Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

How funny that it is the term for what cults do. Although, of course, cults recruit successfully because some people really do need it and never got it from the right places

Start small, good idea.

Sorry you've crashed, building. & that Fuzz is not well today. Arbitrary is right - you sound so supportive of each other. It's really lovely. I have dodgy tonsils too & always had tonsillitis when I was young. I still get bad sore throats every 6-8 weeks & DS gets tonsillitis frequently. I no longer bother seeing my GP about mine.

AU - the counselling sounds like it might be useful. I'm sorry it's exhausting.

I had a good day today but have plummetted now. I came home from work, did dinner, took DS swimming, put him to bed & then made a birthday cake (pirate treasure chest) for my Dad & student. I should know not to do stuff like that when I am not 100%. It took ages when I really wanted to climb into bed and is shit Then a colleague was on FB. She had a hard day today so I messaged her to make sure she was ok & she ended up telling me off for being too independent, for saying I'm ok when I'm not, for not letting people help (I'm not sure how they can help) etc. She invited me over on Friday but I said I couldn't because my Dad will be here &She accused me of pushing people away but that she'd continue to pursue a friendship with me. I feel really shit now. I'm so tired, I feel sick & am really sad. I can't stop crying. I don't think I can do this any more. I'm shit at everything, everything I do goes wrong. DP hates me but refuses to tell me why. And now I feel like I'm not good enough to be friends with.

I had my OH appointment today & the nurse said she was very concerned about me & that I need to see their dr

Sounds like your colleague really needs someone to be around for her (fair enough) but is taking it out on you. If she understood CFS she wouldn't be upset by you rejecting her invite - even without a good extra reason like your dad being there. Please don't feel bad.

Good news about occ health surely. Hope the doctor can help.

I am randomly awake, the annoying thing about POTS is that I have to get out of bed really slowly - I sit up for a while first or I will be majorly dizzy. So I end up being awake for longer as I can't just quickly get up, use the bathroom and get straight back in bed like I used to.

Still, it gave me time to reheat my new electric under sheet thing that I sent my dad out to get yesterday. I used it to heat my pillow which is nice for my achy neck.

It does sound like your colleague doesn't really understand. But, then again, few people do!

I agree that the OH nurse being worried about you can only be a good thing. It means she realises that things really are bad for you (and makes it all the more amazing that you've been struggling in to work). Hopefully the OH doctor will be useful. Although, I'm sure you feel the same way as me about the prospect of seeing yet another doctors. I would love to go a month without seeing at least one doctor.

I had a lovely friend who thought that trying to get me out was a good idea. She's lovely but simply doesn't understand - as you say few people do unless they have experience.
It was the OH doctor who told me I should not go back to work until I was well enough to run for a bus and not keel over. I'm afraid I thought that was a bit over the top but looking back he was ofcourse right!

I was a bit late for my OH appointment and had to attempt to run up a ridiculously long flight of stairs. I was in a hideous state when I got to the top. I don't actually know how I managed not to keel over in the street. My office is very close to the train station, but I cannot run for a train. If I attempt to it makes me very ill.

I've been trying to implement the OH advisor's advice to take a break from sitting every 20 minutes. It makes it very difficult to get anything done. But so does the pain that results from sitting too long. I feel like my life is a series of no win situations. Although, at least this plan might reduce the pain (if not increase my productivity), so I guess that is something of a win.

I am very lucky that there is a nice GP at my surgery, I don't dread seeing her, unlike a lot of the others.

Throat and ear still hurt but in particular my neck is really painful and swollen, which has never happened before. It is hard to move my head.

Thanks to a kind friend taking DD to and from school for me, I have had a relatively easy day despite DH being out all day - snotty DS stayed home from nursery and I have postponed my ECG, but I feel rested enough to hopefully make it to the group session tomorrow.

Magso I think a lot of people are just trying to help but without experience of CFS it is easy not to realise how dramatically different it is!

I dread seeing all my GPs. Nt because they're not nice or anything. More because I think they must feel 'oh, you again'. Thinking rationally about it, they almost certainly aren't. But I feel like I'm at the GP's far too often. I have to go tomorrow again.

My usual yoga teacher is away for 2 months so the sports centre have got someone else in to cover. Her style is very different. I always find it hard to adapt to a new teaching style, because I can't anticipate where things are going (and make decisions about where to hold back to conserve energy etc). Luckily it wasn't like pilates cover last week (which is continuing this week, but I'm going to speak to him beforehand so he can suggest extremely low level exercises for the useless alongside the stuff I just can't do). It was just different and the teacher did ask if there was anything she needed to know and suggested adaptations for me. I've become much less self conscious about sticking my hand up and admitting to health issues in the middle of the class (which is mostly full of very fit and healthy people).

Fuzz, I have an electric blanket thing that goes under the bottom sheet. I often have it on all night & it really helps ease the pain.

Yes, Arb... I'd love to go a month without seeing a dr too. I'm sure mine thinks 'Oh no, you again' when he sees my name. I think I might give my rheumatologist a call & see if I can get an appointment soon. I'd feel more hopeful if I thought the Occ Health dr could fix me. I'm glad the yoga wasn't as bad as the pilates. Change is always difficult.

I've had an awful, awful day. Well, the day was fine until I got to the end of it & was summoned to the office where I was told I'd been reported by my staff for something that is then a child protection case. I discussed with senior management & it's not really an issue at all but a lack of understanding. I feel so hurt and betrayed that my staff (& I suspect it was all of them) didn't even mention it to me. I thought we worked well as a team - we do stuff together outside of work & I've worked with some of them for years. I always ask their opinion & take their advice. I don't know why they've done this. It means I don't trust them any more. I'm usually fairly relaxed (letting them go out for fag breaks, let them leave early without having to take leave etc) but that's going to change now. I really don't want to go to work on Monday - they all left today, knowing that I'd been called into the office and they all pretended to be surprised. I don't know how to face them again. And I have to face them & discuss the issue & explain how it's been resolved.

I feel like I can't do anything right, anywhere. DP left, my staff seemingly plot against me, DS needs emotional support, my dog hates all other dogs. I'm shit at everything, everything hurts & I'm back to wishing I weren't here. Every day is suck a battle without all this on top.

It is not your fault grockle. Life is conspiring against you (alongside your faithless staff). It will get better. It has to. I'm really sorry things are so difficult for you right now.

That is crap Grockle. I would totally take the upper hand, make them feel ashamed for being so dishonest.

Thank you - I will call a meeting next week & explain why we do certain things the way we do & that although they must report any concerns, I'd expect my team to raise issues with me as well. We're meant to be a team & it would be nice if we could work together & support each other.

No more Mr Nice Guy though & no more sneaky fag breaks, leaving early or long lunches (which means I don't get a lunch break ). I often buy them flowers or nice biscuits & send them texts to thank them for their hard work - they get paid peanuts & I really value them. I didn't realise they thought so little of me.

I have a busy weekend ahead & am feeling shit - physically as well as emotionally. Sorry for whinging again.

Are you feeling any better today grockle? And everyone else who is feeling more rubbish than usual.

I saw the GP. The OH advisor wanted me to go and complete one of those anxiety / depression questionnaires because I cried in her office just to rule out any underlying issues. My score is reasonably low. Slightly higher in anxiety than depression but nothing to worry about. In any case, walking back from the GP's (where I didn't cry for a change), I realised that it is the pain that makes me cry. Sometimes it's made worse by feeling guilty about asking for time off work or special considerations.

My OH visit involved me having to run up more stairs than is sensible, nearly collapsing at the top, going uphill, downhill and then uphill again in the ice, and then up another long set of stairs because my train was late. So I was sore and exhausted when I arrived and then I had to talk about needing adjustments and such like. No wonder I kept crying!

Bloody hell grockle, that's so gutting :( it's really horrible when you are betrayed like that.

I've had a similar couple of experiences where I've been 'grassed up' for making a simple tiny mistake - nothing big, nothing that's not easily sorted, and I get called to speak to management for a gentle reminder one time it was for... forgetting my bus pass. Yes, really. A colleague was giving me lifts at one point but had to go elsewhere in the afternoon. I mean FFS if another public-transport using colleague had forgotten their pass (easily done, right? And has NO impact whatsoever on the actual job?) would they get spoken to like a child, erm, no.

Anyway. I made it to group today thankfully - the antibiotics have definitely kicked in (I am considering asking for an ENT referral if this becomes a regular occurrence like it was in 2011). Cough is still really irritating so I couldn't take part in the relaxation exercise as I was spluttering everywhere

It was a good session where we were talking about assertiveness. I am wiped now and my arms feel I have my iron skeleton. DH had to take the DCs out to meet DSD but he'd left the heater on in our room for me so I went to bed, turned the electric sheet on and read for a couple of hours. I hardly ever go to bed in the day and I try not to get into bad habits but this relapse is bad so I'm letting myself ATM.

I've fallen off the Graded Exercise Therapy wagon for a few days - the idea is that when you have a setback, you keep doing your GET if it's a CFS related setback, but you can rest if it's an extra illness on top of it. I decided to start again today and it was only 2 minutes but fucking hell it hurt! I will keep on with it though as although I'm not expecting it to cure me I do think it will help my fitness.

Hey everyone, okay if I come back in?

Well done on getting to your group today fuzz, and doing some of your GET (even if it was only a little, it is still some). It's lovely that your DH had made a lovel warm cocoon bed for you when you got in. It's OK to go to bed when you have tonsillitis on top of everything else. Of course it is. I go to bed over much less.

I've achieved very little today. Having to get up an walk around every 20 minutes all day really restricts how much I get done. I lose my train of thought and then it takes up a lot bit of my next 20 minutes to get it back. Oh well. I got something done though, which is better than nothing.

. Yum. Cake.

Sorry about work Grockle. Its horrid when collegues fail to use common sense and get petty. I occasionally have trouble at work because some of my younger colleagues do not know I work short hours (so I start later than them), and try to pay me back for 'being late' by leaving work we should share for me (and going off to lunch). It can be so petty but feels horrid.
Hope your OH appointment was helpful Arbitrary and you get suitable and helpful adjustments.
Fuzzpig glad you are feeling a little better from your tonsilitis, though sorry you are having this relaspe. Interesting about continuing with the GET even when in relaspe. I have got fed up with waiting for the CFS team to say I am well enough for physiotherapy or GET so has started attending a beginners basic pilates class once a week. The first week I coped mostly, the second week I was less able and by last week I could not do anything that required sustained effort (repeats) and kept getting cramp -so I do seem to be getting worse not better. I am mostly aiming to improve flexibilty.
I have yet another assessment in 6 weeks time so maybe this time I will get some physio or some other support.
I did not much enjoy the mindfulness meditation therapy - it was OK laying down but I just got too dizzy sitting still on a chair. I guess thats the POTS playing up. Others in the group found it helpful, so I think it was just me. I feel I have to try every avenue to get more well.

Hello sirboob! do you think we should change our spoons to sporks? :o

Arb that journey to occ health sounds horrific! Perhaps it was good in a way though as it showed up your problems more? Awful that you have to suffer for it.

BTW the 2 mins is actually all I'm currently doing on the bike anyway. They said to start low, and the friend who gave me her spare bike (who is now on 30mins) started at 2mins as well. I was really expecting it to be too easy but it's really not. Bizarre as it's not like it's all I do - at work I'm barely still, I walk when I have to, and yet 2mins cycling floors me!

I also have stretches to do which I am building up - only doing about 4-5mins worth of the specially designed DVD but again it is surprisingly hard. I'm starting back with that again tomorrow. My 3yo did the stretches with me the other day, it was sooo cute :)

Grockle it was purely due to you mentioning your electric blanket thing that I decided to get one! I was put off by the cost at first but since this latest setback I have been mega shivery and I am so glad I have it now - my grandma gave us some cash for Easter (?!) so it's come out of that. It's brilliant.

Can you self refer to physio, magso? Or just phone and make an appointment?

My condition means that the physios never discharge me and I can phone for a reasonably prompt appointment whenever I need one. I never do though because the hospital physios are no help at all. They're just totally unrealistic (the 4 hours a week of cardio thing, which I have neither time nor energy for) or they're busy giving me stretching exercises that are far too easy. I sometimes consider making an appointment to see if they'll deliver on their acupuncture promises but I can't really face the inevitable telling off over the cardio. I think I just got a hospital physio department full of particularly weird physios though. The physios at the sports centre i go to are, ironically, much more understanding and helpful. And they're the kind that run sports performance clinics and support sports teams, not the kind that are supposed to rehabilitate you etc.

Well the OH journey was kind of my fault. I knew I should have books the earlier train but I didn't (because it would have cost £97 due to ludicrous peak hours pricing). So I got the train that was cutting it fine (and cost £20), which was then late and I had to make it through the ridiculous obstacle course of a city I work in. you can all play guess the city now

But, yes, it does show up that I am not really capable of dashing anywhere. Or stairs. And particularly not both together.

Oh, arbitrary... my GP insisted for ages that I was depressed. I'd cry at him because I was always in so much pain & so exhausted. I score highly on depression scale because I am so knackered, I don't want to socialise. I am in so much pain, I cannot do anything & generally feel shit & useless.

Fuzz, how odd about the bus pass I'm glad your antibiotics are helping now. And I'm really glad you are finding the electric blanket useful. Fab, aren't they? I think we should be allowed one on prescription. I'd really like an electric throw but they are £100

I had a long conversation with my line manager tonight who said everything I have done was within her guidelines & she would accompany me to meetings & support my side. She's had similar issues with staff (& with my staff too) & is concerned about what is going on & why. I feel totally unsuported by senior management & I plan to address that next week. I feel like telling them to shove their job.

I've had a knackering day today - dog training on the beach (pebbly & sandy & very windy so my legs hurt a lot) and then looking after my dad. I now have blue fingers which feel like ice & a rash up my arm.

I kind of find the idea of being told to do 4hrs of cardio a week when you have a fatigue condition...hilarious! It is just so mind bogglingly unrealistic! What on earth are they thinking?

Last summer I was trying to do some (relatively gentle) Physio exercises for a specific problem and ended up in tears because it was just too much...the woman clearly had no idea what to do or how to deal with this.

I have found that I'm slightly better if I avoid anything at all which raises my heart rate. I can walk but try to avoid any dashing after the kids. It has meant I recovered a bit quicker than I thought from crash on Tuesday. Have managed work yesterday and today.

And yes, 4 hrs of cardio with an illness that causes these kind of problems is ridiculous. How is that possible? I get very shakey, achey & out of breath doing simple things like hoovering a room or walking upstairs. I don't know if it is just me being incredibly unfit or what.

Well apparently the thinking is that lots of cardio reduces inflammation and that means I'll sleep better because I'll won't wake up several times and need to find a position that isn't uncomfortable.

All very well, except that 4 hours of cardio a week (and it has to be cycling and other hard stuff, not walking) will utterly exhaust me and make me useless. It would also give me additional pain (especially in my pelvis because cycling seats are awful). And I won't be able to do any of the other stretching/mobility/core stability/breathing exercises that help my condition.

So, yes. Brilliant plan.

The GP did a HAD thingy. Most of the questions are not really relevant to my situation. E.g. The one about whether you've lost interest in things you used to enjoy. I haven't lost interest; I just don't do them very often because I'm too tired/sore. I used to enjoy snowboarding, for example, but it's not really something I'm physically capable of. Doesn't mean I've 'lost interest' though. I just don't want to endure additional, excruciating pain. I feel this is reasonable.