Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

I hope you're feeling slightly better now, at least, grockle. It is really hard when you feel you can't cut things short because people just don't understand how much you'll suffer for it the next day. Unless you've experienced it or seen in a partner, you just can't imagine how bad things can be the next day.

Today has been better than yesterday, but not great. I got up at 7 with DS2 (as I did yesterday, because clearly I don't need or want a lie in), got him breakfast and watched films with him. DH eventually got up, asked me several times if I'd given DS2 breakfast and produced some Mother's Day stuff. He took DS2 to choose something yesterday (a bar of toblerone, which DH will undoubtedly eat) but he didn't so much as ask DS1 to sign the card. Poor DS1 felt left out of Mother's Day. I've spoken to him and he knows that it doesn't matter, but I'm not impressed with DH.

Eventually DH announced that we should go out for lunch and wanted to head to the centre of hell metrocentre because 'there are lots of restaurants close together'. When we got there he suggested we try the new Japanese one (I like Japanese food, as does DS1). DS1 and I ordered a bento box thing that was enormous. DH ordered the most expensive thing he could find on the menu (teppen-yaki sirloin steak) and then sulked throughout the meal because it came rare rather than medium, was cold and his friend rice portion wasn't big enough. He completely refused to complain to the waitress despite me telling him to stop sulking and complain several times. He eventually ate half of DS2's noodles (complaining that he doesn't really like noodles all the time). He did complain at the end because I made him and they took it off the bill which I had to pay. Afterwards he insisted on going in to McDonald's to get a burger. So, all in all, a lovely Mother's Day lunch.

Then we went to a birthday party for one of DS2's friends at soft play. It was fun. Noisy and chaotic and exhausting, but DS2 really enjoyed himself. He really likes the boy whose birthday it was and had been really excited about the party.

I feel really crap. I HAVE to go to work this week... but I really can't if I'm like this. I had stuff to do today & I've not left the house.

Now DP's gone, I've not had a lie-in or a rest for months. And today, I really could have done with someone making me a cup of tea.

Your day sounds frustrating, Arbitrary. I really get the feeling that you'll be much better without DH. He sounds like he's bringing everything down for you all. Poor DS 1. And DS2 with his lunch. Has DH always been like this? What a day I'm glad DS2 enjoyed the party.

Oh Grockle I am so sorry you feel awful. I suspect I am not too far from you (SA in H) so if I can help PM me. Do you have a travel kettle you could safely take to bed ready for morning tea? I do that sometimes in winter when dh is away. Ds has been getting up early for some reason ( I thought he had grown out of that phase as he is now a teen) and I had forgotton how tiring the 5am starts are. He needs less sleep than I! Oddly I had a bad night last night. No idea why - feverish like you. I have injured my knee - mildly but its difficult to get comfy. I wonder if the caffeine in the coke and tea is a problem for you - more likely 'just' exhaustion.

Fuzz great news about your DH s job offer. Hope it works out well and takes some of the bread winning pressure off you.

Arbitrary, sorry you are not having a good time at the moment. I hope Ds1 feels less left out by the end of mothers day. I have to travel to work and got caught up in train delays due totrack flooding so was late home and felt like falling asleep in my tea. Fortunately DH was not away and was there for ds and cooked the tea. I sometimes feel the travel is harder than the work IYKWIM.

Belles hope mothers day went well for you.

Gosh Arb, you need to drop the 'D' in DH - what a fuckwit I'm so sorry he ruined your day.

Grockle is there a particular reason you need to work this week? As opposed to the usual money worries etc - if you aren't well enough, you aren't well enough.

I have decided to try and get signed off until my new reduced hours kick in. I'm not sure when that will be but I just can't face another full day, I just can't. Somehow I have to decide what hours I want. Although right now I don't feel up to working at all.

I think the type of pain I am getting is enough to consider a dx of fibromyalgia TBH, at the time I saw the CFS specialist it was more joint pain that was the problem but now I'm wondering if it's worth pursuing a dx of FM as well.

He hasn't always been so awful. No. Or maybe he has, but I tolerated it better. Probably not. I'd've run a mile if he'd been like this when I first met him. We just had an argument over cleaning. Apparently I'm completely awful for getting annoyed resentful because DH 'asked' me to clean the bathroom. Apparently the fact that this 'asking' was in fact a passive aggressive comment about how is such a martyr and he has to do everything, etc, etc, doesn't make any difference.

Apparently I'm supposed to be overjoyed with the toblerone too. DH chose it because I gave an example of him being entire selfish that centred around a toblerone (the example was that I bought him 2 big bars of toblerone and he didn't even consider asking me if I wanted a bit, while he sat next to me on the sofa eating it himself). It's just another example of his wilfully misunderstanding me. I didn't (and don't) want any bloody toblerone; if I wanted one, I'd've bought one for myself months ago when the issue arose. It isn't about toblerone at all. I just want to be with someone who might consider sharing something with me.

It doesn't make any difference how clearly I try to explain any of this (or about the passive aggressive 'asking'); he just dismisses anything I say, think or feel. I'm just fed up with it all.

I sat in the restaurant today thinking how lovely it would have been if it had just been me and the boys. DS2 was fine sharing his noodles, because he'd already eaten half of the bowl of noodle soup that came in my bento box and because DH had insisted that we order a full (adult) portion for a 3 year old. Apparently my plan of letting him share my soup and getting him a bowl of plain rice to go with it was giving him 'scraps from the table', so he had to have something off the menu.

My mum has asked me if she can take the boys on holiday in the summer. Probably to Disneyland Paris. She's even said that DH and I could come too. She keeps asking me if I've spoken to DH yet. I haven't though. I don't know how to. He'll just get arsey and unreasonable and it'll cause a massive fight. I keep changing the subject with her because I can't explain the problem to her. She also asked if she can come to visit over Easter. Again, it'll cause a huge argument and DH will be petty and difficult. I found myself disappointed that she hadn't suggested dates in the week that DH will be abroad at a conference. I really don't need this shit. My relationship with my mother is difficult, but I get no support from DH. Instead he acts like a sulky teenager and makes it much more difficult.

Magso, I have PMed you, thank you. Interesting that we both felt off last night. It shouldn't be the caffeiene but who knows. I have knee pain too but it's just th eordniary tired, aching pain that I usually have. A travel kettle is a good idea - I am going to invest in one!

I'm very glad that my journey to work is 20-ish mins in the car. I couldn't do it if it were longer or involved waiting for public transport.

Fuzz - definitely push for dx of both, if you can. Being signed off til your new hours start is a good idea. At least that should make work more manageable.

Arbitrary, the whole thing just seems like hard work for you. And it shouldn't be. Why is he so self-centred and oblivious to your needs? Why didn't he clean the bathroom himself? And, I'm sorry, but I laughed at 'scraps off the table' - DS still sometimes has that when we go out I feel for you though - when exH left, we carried on playing happy families for certain things & it was horrible. Much better when he left & didn't visit or insist on being involved in things.

I've only just realised that the title of this thread is wrong - it was meant to say something like 'Fibro, ME & Lupus' I know that other people have different problems but I tried to include everybody and failed and it's only taken me 3 months to notice

grockle :o

Maybe the next one could be called something like 'chronic pain/fatigue illnesses' or something?! As long as it still involves spoons obviously.

It didn't put me off, grockle. So you can't have done that badly.

I would have laughed at scraps from the table if it hadn't been such a crappy situation. I don't think it's a problem to invent a children's menu for yourself using side dishes and bits of other family members' meals. Surely that's standard practice for most families.

Oh good I don't think I'll start the next thread!

It is certainly standard practice here. I get cross when I go out to eat nice food & the menu is lovely but the children's menu is chicken nuggets or fishfingers. We often order 3 adult meals and various side dishes which is more than enough for DS as well. And he eats far more than I do. I have learnt never to share dessert with him

I am now having weird chest pains... I am sure it is just stress but AAAaarrrrrggghhh. I want to be well. My psych said I probably won't ever be!

Your psych said that?!? I firmly believe this is a temporary blip. Not a quick one of course as I know it can last years, but I do have faith that I will beat this.

Yes! I think he was trying to be supportive for my DLA appeal. But I guess it is the truth. I can learn to manage it better & pace myself properly & I should have times when it's really not bad but between the 4 dxs I now have, I might not feel like I used to. 2 of them won't really go away & the Lupus & fibro will come & go. Plus I'm getting older & that's not going to help. I feel like I am 95 at 35. How will I feel when I am 65? AND STILL WORKING because I cannot retire until I am 68

I think having faith that you can beat it is brilliant. Maybe I'm just not in a good place atm and can't see this all lifting. But I am hopeful it will get better. It has to. I should try to think of it more like you do. I just get so bogged down with the pain etc & it's too hard to see that it might actually be ok.

I can understand your frustration that it will never go away. That's very hard to deal with. I try to focus on the fact that some people do eventually go into tap kind of 'remission' with what I've got (in the sense that they stop experiencing their symptoms as problematic and never experience another flare) and ignore all the factors that make this less likely for me (e.g. the fact it started in childhood and that my hips are most definitely affected).

I get chest pain too. Apparently it's inflammation in my ribcage and nothing more sinister. I have to do breathing exercises to put my ribcage through a range of motion and make my diaphragm work harder to try to alleviate/prevent it. It's horrible though. Like crushing, complete with breathing difficulties. The breathing exercises have been helping. I think.

That sounds quite positive, Arbitrary, especially if you ignore the bad bits I get sucked into being very negative.

I'm glad your breathing exercises help...it sounds very painful. I can't sleep. Again.

FWIW I think I have accepted I may never be 'normal' (physically I mean - I accepted that I am going to have lifelong MH issues a long time ago!) - I think I will always have to be careful and pace myself to some extent. The people I know who have beaten CFS have said they are more aware of not overdoing things. So I guess in a way I will always be limited... I dreamed of being a teacher and I don't know if that's sensible, and I think it will be a long long time before I consider returning to FT work in any job. I'm trying not to think about it too much, and am just focusing on getting to a point where the pain and fatigue are reduced and I have some kind of life!

I phoned my manager this morning, she is so much more sympathetic than the other senior staff. I think she understands what I mean by 'relapse', hurrah!

But it is snowing so I am really dreading getting to my GP appt on Wednesday.

hi all, just catching up with you all, AU sorry mothers day didnt start weel, i too got toblerone !! mothers day started with DD facetiming, her dad then a stroppy, here these are for you < as she launched a gift bag onto bed>after i had sang loudy happy mothers day to me!! i didnt speak to DS till 4pm strikethrough:when i rang him and again was greeted with a grunt! but thats my kids for you. DD made a cake which took me an hour to clean up after her attempts, i felt sick all day, made tea then went to bed....the noise was too much. im sure DP thinks im a miserable cow but honestly a pin dropping last night would have rang around my head..

today i have been to town early and treated myself to a Costa breakfast (coffee and toast) not cos i really fancied it but as a means to do something constructive with my last but one AL day. last week i spent the day in bed, i am back in bed now with a hot water bottle the dog and PC thinking i am wasting my life awa, but havent actually got the energy to do much more, without been a wreck the rest of the week and i am working.

Herein lies my next problem....i really really dont think i can do 5 days..... especially when a monday will be fairly quiet, but will probably get busier over next few months due to expanding the service into other areas, nevertheless this wont be a regular thing, and because i crash when i stop i could possibly fit it into 4 days.... does any one crash the minute they stop ie lunch breaks at work or after doing chores at home... i am terrible, coming in from work at 2pm then going back out for DD at 3.15 kills me.

last week she told me i looked nice, i looked a chav, but i think what she menat was i had clothes on and not my PJs which i usually have on. (i do sit in the car and she meets me i dont stand in playground in PJs honest!!)

oh well need to warm hands now cos im frozen.
spoons t you all

xx

Hi belle, sorry you feel so rough xx

I spoke to the occupational therapy dept at social services just now, they are going to send me a perching stool thing for the kitchen next week. She also said that if I ask my GP to refer me to physio, they will do a 'walking assessment' on me and recommend what aids to use (I have been reluctant to try any because of the pain in my hands).

Got loads to ask the GP now (glad I've booked with a really lovely one!) - sick note (with proviso about reduced hours), physio, POTS specialist, and I want to try increasing my amitriptyline to 50mg once I stop my early starts at work - I haven't had any bad effects from them so far.

Hi everyone

Arb your 'd'h sounds like a selfish arse he should be supporting you not acting like a child, sorry he ruined your mothers day lunch.

Fuzz asking to be signed off till you go to less hours sounds like a good plan.

Belle I crash when I stop too, I can push through work but the second I stop I just crash, I never ever pass out at work but at home I faint all the time.

I saw my endocrinologist on Friday he is sending me for a short synacthyn test to see if I have Addisons disease but I got the feeling that it's only because my GP has suggested it, lovely gp is convinced it's an endocrine issue but endocrinologist has discharged me he says if the test comes back positive for Addisons he will see me again otherwise there's nothing else he can do not that he did anything apart from make me feel like a hypochondriac

I am beyond exhausted, I have no spoons left and have no idea how I'm still going, I have 2 weeks till my surgery and I'm counting down the days because I will officially be able to spend 2 weeks doing nothing but recovering.

I feel constantly sick and have a permanently upset stomach and I keep getting a sharp pain in my head

Belle I crash too when I stop hense the house being messy. You ought to get the GP to check out the chest pain.

Smiling sorry you are so unwell. Hope you op goes well. Be aware you may need longer than some to recover. I was not well enough (or hygenic enough!) to return after 2 weeks from my sinus surgery but needed the full 4 weeks ( 2 - 4 was the recommendation). Perhaps pre alert your work to this.

Fuzz I tried thick support tights and think they have helped a little with the POTS symptoms at work as last week ( when I wore normal warm ones) I really struggled again. Not proper compression but those cost loads. I have the compression leggins I wore for surgery so might try them under trousers.

I get pain in my ribs (costrocondritis or similar) but its not too bad at present. I have not found anything helpful as yet.
I think the pilates might be making me worse. I have got less able each work.

Im glad im not the only one who crashes when they stop ( although i dont wish it on anyone so sorry magso and smiling!!) I have a bit of an OCD thing about places been tidy so i tidy before i collapse otherwise i cant settle......strange i know i blame my mother, i used to go to bed and get up next morning and living room would be a different colour....... my brother is just as bad and if i ring either brother or mam on a sunday at about 11 i can guarenntee we are all peeling enough veg to feed a village for sunday lunch....nevertheless my brother is far worse than me, i had to take photos of his cutlery draw...everything is in perfect order....nutter lol ( must run in family)

I agree with Magso about Grockles chest pains i think you should get it looked at, if its nothing then not to worry but as a British Heart Foundation nurse, i say unexplained chestpain should be reviewed in my sleep!!!

How are you feeling today Grockle, and do you feel better for not going into work Fuzz. AU how is your H today??? did you enjoy your toblerone ( hope you made him watch every mouth ful!!!) .

right tea call, after i have moped up the mess we made trying to worm dog, who refused alot to have a syringe in her mouth after she as been to vets for her booster jabs.....poor dog, she looks proper pissed off ..i know how she feels

spoons

x

Hi everyone, sorry to read that you are all having a hard time, sending you lots of spoons and hugs.

I dont really want to moan but am having a tough time at the moment. I feel im letting my kids down because im so useless at the moment. I feel so ridicously tired its painful and im getting cold after cold too so feeling rather rubbish. I too feel like my life is just slipping away from me and Im wasting it away sleeping or vegging out on the sofa, having to decide what is most important and leaving the rest.

My ocd seems to have reared its ugly head too, so Im killing myself cleaning and stressing out about dirty skirtingboards. My brain is saying clean clean clean!! and my body is saying forget it!

Sorry for the moan everyone, hope it picks up for us all.

I think accepting that things may have to be different forever isn't a bad thing. At least then you can work out how to manage rather than living in denial. My goal is the same as yours... to have pain & fatigue under control and to have some kind of life.

Justtired, it's really difficult to have the kind of illnesses we do & to look after children. I'm slowly realising that whilst I feel very guilty for not being a better mother & for spending too much time in bed/ lounging around, DS actually likes that. I have a similar cleaning thing to you & Belle... I cannot settle if the place is not clean & tidy. It's horrible, feeling that your are wasting your life. Belle, can you alter your hours, I can't remember what you said about that?

I have a phone appointment with occupational health on Wednesday. I'm not sure what will happen.

Smiling, your endocrinologist sounds useless. Sorry things are so crappy atm.

Can you get a cleaner, justtired? That might let you stop worrying about skirting boards.

H is worse today. He's really angry at me and aggressive. Apparently DS1's school were trying to phone me this morning (because he forgot his inhaler) and he couldn't get me on the phone either to tell me he had a bump in the car probably because he always thins he has right of way no matter what. The house phone honestly did not ring. Or, if it did, I didn't hear it. And my mobile was downstairs because I don't carry it around with me at all times. Apparently I should.

He came in and was immediately very aggressive. I tried to explain that the phone didn't ring but he just kept on and on. So I got defensive. He's still angry at me but he doesn't listen to what I say. During his last tirade I just sat quietly, listening with my eyes closed (lest I so much as look at him wrong). But that just made him stomp off going on about how I wasn't even listening to him. I literally cannot do anything right. He just came in to my (used to be our) room didn't say anythng and then walked back out because I didn't do whatever he's decided I'm supposed to. I have no idea what I'm supposed to do. It will just be wrong.

He's even more angry because he caught me looking up houses to rent. But, I need to think about my options. I can't just live like this. He's always going on about going away and has been applying for far away jobs. But it's a problem if I so much as look at whether there's a possibility that I could afford to rent anything near where I work. We're supposed to be seeing the counsellor later this week but I'm dreading it. I really don't see what good can come of it.

Stupidly I shared the toblerone with H.

I have my occ health appointment tomorrow, which I'm now dreading. I don't know why really, but I am. I should book a train ticket.

Hope all goes well tommorrow at OT Arbitrary. Your DH sounds very stressed. Perhaps he misdialled after the accident. Its horrid having to be on high alert and not knowing how to get things calmer.
How did you manage today Grockle? Thanks Belles for untangling my mixed up post.
I seem to be the only one without OCD tendances but I hate mess and muddle (and it drives dh to distraction too) so not having the energy to fix it drives me insane. I can hear ds who should be in bed rifling through his toy boxes - and the noise makes my hair stand on end because I know how long it will take me to rectify the mess he cannot sort out himself.

I'm not sure he is stressed. Alas. I've just tried to book train tickets for work but there isn't enough money in the joint account to book tomorrow and next week. I can't face asking him to transfer some money (he has plenty in his account because our financial arrangements are fucked up). I just can't. I shouldn't have to ask for money and I don't want to.

So I'm going to go to sleep instead.