Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

Hmm ... even more TMI. Read your 'up in the night' posts with interest, as I am fucking incontinent when tired. Up in the night often means not making it to the loo, which is always fun when you're trying to get more sleep. I've noticed it's worse around my period, but so is everything. I've become a heavy consumer of old-lady pads, to my despair, and even they aren't enough last thing at night :(

There, I've confessed.

Grockle, what age are you? Change in periods could be perimenopause?

I'm 35, garlic. So fairly young for perimenopause, I think but certainly not impossibe. I'm not bothered if I am, I just want this to stop. It's carnage. I've never had blood dripping out of me before. Gross. It means I am reluctant to stray far from home in case of an emergency. Unfortunately, this coincides with our trip to London.

I have also not made it to the loo once or twice.

I have a mirena coil. No periods at all. Do you think that might help you?

Oh, I do sympathise. I bled like a battlefield every sodding month after coming off the pill - still do, but at least I'm missing the odd one now! You can get muscle relaxants and anti-clotting agents, which help. One's called mefanamic acid; I've forgotten the other. In my day, coils made periods heavier but I'm hearing a lot of good things about the Mirena.

Don't forget heavy periods make you anaemic.

I meant to congratulate you on letting work see you're unwell! It's criminal that it should be necessary - but, as you've said, you gotta do what works.

I'm having another incredibly early night, having used all my spoons on a walk round town while the SUN was SHINING! I barely recognised it

muscle relaxants and anti-clotting agents - actually that might have been clotting agents.
I'm no bloody use am I

I think the copper coil makes periods awful. The mirena has completely stopped mine now. I had spotting for a while after I got it but they then stopped completely.

I've never had a coil. Never even considered it but it sounds promising. Ill see how I go this week & think about seeing my GP. Ive not seen him for at least 6 weeks so I expect he's missing me now

I'm supposed to be having a mirena fitted when I have my operation, I agreed at the time the gynecologist suggested it but am not sure anymore.

My periods are horrific, the pain is unbearable and I'm so heavy I can bleed through a tampon and towel in 10 mins, I've tried all kinds of pills but nothing works for more than a month.

I've always been against anything like the
pill which is hormon based so am struggling to accept having a mirena fitted.

I was in the pill (I tried several) but although they lessened the bleeding the pain was still as bad

hi all,lucky on the period front (thankfully after reading your posts!!) but i did try both coils and begged for both to be taken out!!!!!, my periods make my symptoms much worse.... i have had a stabbing headache for a week.... but due on any minute thankfully!!!

smiling, that sounds unbearable. I don't know what's triggered the change for me but having blood literally pouring out of me is a bit scary. I've bled about 100ml in 24 hours now but it's slowing down a lot now. Can you change your mind about the coil?

Hi all. I hope you don't mind, but I cannot read all your posts, I'm exhausted! (This is a TMI post from me)
I will say that I also have very heavy periods; I empty my mooncup every hour! which is a massive loss. I don't though, have monthly periods now as I'm peri menopausal. The Mirena was an absolute nightmare for me, with never ending dirty looking gungy blood, this went on for over 9 months and then I had periods whenever they decided to turn up ~ usually 2 or 3 times a month! and loads of side effects on top too :(

Yesterday, I was in training at work and was 'fighting' and I suddenly had a complete drain of all strength and energy. I've never felt it happen like that before and it was frightening. It felt like emptying out a jug of water or turning off a robot. Very scary...I'm completely knackered now.

Turning off a robot - what a brilliant analogy. That is SO true. My analogy only works if you've seen the movie X-men Origins - where you see him under water in a tank getting his skeleton injected with adamantium. The heaviness suddenly spreads through me.

Sorry you feel so crap - did you have to stop partway through training?

I am pretty lucky with periods really, they used to be heavy but since having my 2nd baby they seem to have righted themselves, which I've heard can happen. I get one day of hell (although nothing like what some of you go through) and then it slows down and only lasts a couple more days.

I am really not sure about using hormonal contraceptives, as I am so anxious about changing things in my body (hypocritical I know as I willingly take ADs!) and the idea of something stuck in my womb freaks me right out.

BTW, the other medication is called traxenamic acid or something like that. I've never tried it, although I was given mefenamic acid as a teen.

Another interesting fact - although obviously heavy periods can make you anaemic, I've read that anaemia itself can actually cause heavy periods too

I'm funny about hormones & sticking stuff inside my body too, yet I take painkillers & ADs without question. [hmm[

I think what I've gleaned from this conversation is that I need to have a DC2 This would mean, no periods for 9 months + however long it takes them to return & then, going on Fuzz's experience, my periods will be much more normal.

Now, just need a man...

I can change my mind about having it.

Ive read up on it and the experiences of women whove had it is really varied some love it and have no problems whilst others have constant bleeding, im torn because on one hand I desperatly want something to help but on the other im terrified it will make things worse.

DP is to squeamish to discuss it with me and just says do whatever I want so have made an appointment with gp to discuss it

Tbh I hated mine for the first few months due to the spotting. It wasn't painful, just annoying. Then the periods went away and it's great. I'll get another one fitted when this one is done (whether I want any contraception or not) just for the lack of periods. I used to have horrible, heavy, painful periods. I'm not keen for them to return.

I'm certainly not having any more children. I find it hard enough to get enough sleep as it is!

DS2 has decided on his own to get dressed this morning. It involves many trips to see me to tell me about it. He needed help with his tshirt, he puts his boxers on backwards (just like his big brother) and is working on the trousers at the moment. I bought him new red trousers and a Star Wars hoodie yesterday and he's super keen to wear them. It's very cute.

DH has gone to work (it's an open day today), so the house is very quiet and relaxed. DS1 is quietly playing videogames in his room while DS2 amuses himself with getting dressed, watching DS1's games and playing with his octonauts. DH has accepted he's depressed and that his behaviour has been terrible for ages and is going to go for some therapy. He's applying for jobs very, very far away and seems determined that'll help him break out of negative cycles of behaviour/thinking. I doubt it, but it's his life.

Im funny about sticking stuf in my body too

I had a coil when I was younger and did not get on with it at all.

Letter from the council this morning, sick pay has run out so I will have to go back. Don't feel good about it at all but there is nothing I can do.

I hope you enjoyed your quiet day, Arbitrary.

Sorry, icepole... I hate having to think about money when I feel so utterly ill. I try to work until I can manage no longer but I am nearing the limit of my sick pay too. I'll still be sick but won't be paid and then things will get messier. I know I'm really lucky to have a job that pays decent sick pay though.

We've been busy - my legs hurt a lot & I'm walking slowly with a crutch. I met my sister for coffee this morning then took DS & the dog out & am now hom making marmalade again. The chopping hurts so much but I'd bought the ingredients ages ago and I didn't want to waste all that fruit.

Not heard from DP since Thursday...I've typed several 'Ha! I can do this without you' and 'I love you, please come back' messages but not sent any .

I need to find a way to get out of the job. I can't do it feeling like this. The thought of back to back difficult classes fills me full of dread.

Can you chop with a food processor, grockle?

Well done on not sending the texts. You can do it without him. The whole limbo thing will be making it as bad as possible.

The quiet day was ok. The boys played together while I cleaned the kitchen properly (including taking the hob on the range apart). Then DH came home and wanted to go to the park. It was noticeably more tense with DH around. He seems to have properly decided that he's going to find himself a therapist next week, which might help with the whole dampening the mood effect he has at the moment. I do feel like I'm in limbo too. It's much easier if they do both of: telling you that it's over and move out. One or the other is confusing and unfair.

I've been trying to do all the housework (including the bits DH usually does). He did do the hoovering this evening, but I've done everything else. It's exhausting, but I figure I've got to get used to doing everything myself so that it isn't such a shock when there's no one there to help.

Icepole, I keep going through that... I don't think it's a job you can do if you're struggling with what we do. Between the pain, exhaustion & brain fog it's hard enough...add a stressful job, unpredictably challenging children & it's impossible. I have no idea what else I could do though.

I have just taken on another job... I've agreed to have an 11 year old foreign student come & live with us for 6 months. It's easy-ish money but another person to feed & look after. I can't really make her cook her own dinner so I'll HAVE to be better.

Arbitrary, I use the food processor to grate cheese but not veg...don't know why. I don't think it would handle orange peel but I should use it for carrots etc. That said, we so rarely eat proper food these days. I've just ordered frozen peppers & broccoli etc so that I have a stash of veg ready to add to things if when I cook.

I ended up sending a text that said 'I miss you... not whining or begging, just letting you know we were thinking about you & DCs' I'm no longer crying all the time & I'm much more ok than last week but I feel sad that I'll never have DP squeezing my hand or laughing with the DC again. And I miss his DC... when we were all together it was lovely - me and a house full of boys.

You're doing very well. Be proud of yourself.

Based on the 'frozen mash' thread, I went and bought mash, chopped onions, chopped garlic, ginger and some herbs for the freezer. Had the mash tonight. It's actually nice, and only takes 3 mins in the microwave. I didn't say anything until after tea, but DH agreed it was nice. And much easier than making it yourself. I used the onions and garlic in a stew I slow cooked in the oven too. I think there was also a mix of frozen chopped stew veg and herbs in the cabinet with everything else, which would have made it even easier.

My mum also bought me the Jamie Oliver 15 minute meals. There's no way I could do it in that time frame but it is a really good source of low fuss recipes. Most of the chopping is done in a food processor in all the recipes. And I can see ways to adapt others to make it even easier (e.g. Using frozen mash/sweet potato mash, ready chopped onions and garlic). It's quite salad heavy though, which might be a problem (none of the boys in this house are enormously keen on salad).

Thank you I want him back

Frozen mash? I will add it to my list. I feel so lazy because I used to be quite a foodie & made everything myself. I don't care any more, I just need a quick & easy way to provide a range of decent-ish food. More interesting that cereal/ toast that poor DS has been living on!

Be warned: the frozen mash looks horrific once you open the bag. It comes in pellets that you add a tiny bit of water (or milk) to, stick some cling film on top of and chuck in the microwave. You stir it half way (and it still looks dire) but it's fine once it's done. It tastes absolutely fine. I added extra butter and cheese and stuck it under the grill for a few minutes.

Don't believe the quantities on the packet either. I doubled the amounts it said to make for 6 and there wasn't really enough. Next time I'll at least triple it.

Apparently there is frozen sweet potato mash to be had too.