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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

GoodKingWenSOLOslas Sun 30-Dec-12 02:41:12

Hey all! Smiling I think you should ask the police for advice re his ex. She should not be able to do that to you.

Grockle your Dp will not change, they never do <expert here!!> and all he is doing is draining your every resource, your very soul. You will do better without him. It's like with my Dd's father; he was hardly ever at any of the social events that I went to, he was always busy elsewhere, so I felt like a spare part every single time sad until he wasn't in my life anymore, then I didn't feel lonely or out of place at these things as he wasn't supposed to be there with me. I felt better without him. Is your Ds his Ds?

If any of you want to lose weight easily, let me know and I'll point you in the right direction.

Hi Boobs grin

GoodKingWenSOLOslas Sun 30-Dec-12 02:45:56

Oooh! didn't tell about my Christmas gifts did I?!

Mum bought me what I asked for this year. She got me a Bosch drill!
Ds actually bought me a gift. A 4 CD set of Rod Stewart 'Storyteller'.
My friend bought me a Blueray player and a film.
Brother and SIL perfume (doesn't do it for me though) it's FCUK Friction.
Nephew Box of Milk Tray.
Niece a CD of Jonathan and Charlotte.

belleshell Sun 30-Dec-12 07:24:43

Whose boobs are you waving at Grockle wink heeheh. xx Hi SIR welcome along.....

Smiling...........the only advice i would give is..........tell her you got what she hasnt and she aint ever getting it back so get over it ...................... ( i was gunna tell her to go get f*Cked) ...seriously if the threats continue i would go to police.........even if its only to record it. and no its not wasting their time, no one should have to put up with threats and you have more than enough to contend with........and if she does cause a scene in front of the kids she will be causing the upset not you.

Oh to be a step parent. Life must have been so much easier when we got married for life, because life actulaay ended at 35 ............

Right now pain killers have kicked in gunna try get back to sleep..

catch you all soon

Spoons and love to you all


Grockle Sun 30-Dec-12 10:00:33

Lovely, solo smile

Smiling, I think I'd be keeping notes of all incidents- dates, times, what happened etc.

It wouldn't hurt to tell the police. You can use your local number or even email. I've had an ongoing issue with a neighbour making threats & deliberately driving her car into mine etc. i informed the police because it kept escalating & I wanted a record of what had happened & how much it was bothering us. The police were really supportive.

smilingthroughgrittedteeth Sun 30-Dec-12 10:22:36

Ok got some sleep and feeling much more able to cope today, have just watched DSC open their christmas presents and had pancakes for breakfast, getting ready to go to mil's now for christmas dinner take 2 grin

I will call the police and log it because after 2 years of trying to keep her happy I've had enough, I'm going into the new year as I mean to go on and that's by not giving in, I will be going with DP to drop kids home if I could get DP to agree I'd be ringing her to say we can't afford to take them all the way so if she wants them she will have to meet us halfway belle the old me would have told her to go fuck herself but I don't have the energy for confrontation anymore and I try to keep the peace for my DSC, they don't deserve to be used as a pawn and I despise their mother for doing it, she wouldn't think twice about attacking me in front of them the only thing I could do is refuse to engage so that they see it isn't me or DP that cause the problems and hopefully she realises the only ones hurt are them sad

I love my DP and DSC dearly but sometimes I think life would be so much easier if I hadn't got involved with him. That's an aawful confession to make blush

SirBoobAlot Sun 30-Dec-12 11:00:49

<Boobs waves back grin>

Grockle they never change. I spent two years waiting for ex to change, and realised recently that some things aren't right with DP either. Bloody men, tempted to go on strike.

I'm seeing a friend I haven't seen for ages today as she's studying in Canada for two years, I feel like crap. Why are the bad days always terribly timed?!

belleshell Sun 30-Dec-12 14:56:02

oh god im dreading tomorrow.........1st day back at work..
Funeral... then NYE celebrations......... i dont think i can do it all...(repeats over and over .i can do it i can do it..)

what are your plans for NYE

fengirl1 Sun 30-Dec-12 15:36:14

Reading the Spoon Theory made me cry. My dd1 is about to turn 18 and was diagnosed with Wegeners 19 months ago. If anyone has it, or knows someone who does, I would love to hear from you. May your cutlery never run out! smile

smilingthroughgrittedteeth Sun 30-Dec-12 15:38:48

I'm working tomorrow and babysitting tomorrow night so my new years eve plans are to curl up with a 6 mth old and sleep until his mummy gets home

Grockle Sun 30-Dec-12 21:08:48

Smiling, there's lots of things I think about that if I'd done differently or avoided, life would be much easier. I guess life is never going to be easy. We just need to figure out how to make the best of what is thrown at us.

I need to decide if the positive bits about me & DP outweigh the negatives. I don't think Im in the best frame of mind to make big decisions atm but it is certainly something I need to address, and soon. Maybe I should join SirBoobs in a strike. That would solve a lot of problems grin

My amitriptyline was upped at the beginning of the week - from 50mg to 75mg & it's really thrown me. it knocks me out & leaves me hungover & foggy all of the following day. I can't remember if that is one of the side effects that gets better over time or not.

Tomorrow is odd for me: It's my DMum's 60th birthday on the 1st so we often get together on NYE to celebrate her birthday. I hate it & it's really bothering me. Tomorrow I'm leaving DS & DP at home to go to London with my sister. We're meeting up with family (including the person who abused me for years when I was a child) & having a celebratory meal in a posh restaurant. I've ummed and aaahed about going & have decided that I really need to try. So, I'm going. But I'm dreading it & would rather stay home with DS.

Belle, you've got a busy day tomorrow...sorry it's not all good stuff. Hope you have time to rest in between.

Fengirl - I have no idea what Wegeners is but I'll google. Sorry the Spoon theory fits your DD. It's awful that things like this effects people so young.

SirBoobAlot Sun 30-Dec-12 21:13:12

Fengirl - I don't have Wegeners, but fell ill at 16 (now 21). If your DD wants another young person who is dealing with a chronic illness to talk to, then please PM me.

Belle, sending you a big hug. x

Had a nice day with my friend, knackered now though. Hopefully have enough energy to manage a shower tonight.

fuzzpig Sun 30-Dec-12 21:15:42

Grockle you really really don't need to go if you will be seeing this monster. You are ill enough as it is. Xx

fuzzpig Sun 30-Dec-12 21:18:39

I was meant to be having a shower tonight too sirboob. Working tomorrow (4th time since Xmas FFS) but in a lot of pain tonight. Plus, Ripper Street is on. So, sod that. blush

Grockle Sun 30-Dec-12 21:27:11

I've given up having showers... I can't stand long enough to have one & I get so cold. If I have a bath in the morning, it helps the stiffness & wakes me up gently. Plus, I get to lie down for an extra 10 minutes.

I know I don't have to go tomorrow but I feel like I do. I should be there. Plus, if I go, he know's I'm in control. I want him to feel uncomfortable... I hope all this Jimmy Savile stuff has made him realise that I could, at any time, report him or say something. He broke me & it's had a huge impact on my life. But I don't want him to stop me doing things like celebrating my mum's birthday. If it's too much, I'll leave but I want to try. On the other hand, seeing him acting perfectly normally, laughing & joking etc makes me seethe & I want to kill him angry I'm not coping well with anything atm and I'm sure this is not helping!

SirBoobAlot Sun 30-Dec-12 21:27:22

No, really need to do it... Lol. My hair is vile. Keep it long so I can chuck it up (thank goodness for dry shampoo) but really needs a wash...

SirBoobAlot Sun 30-Dec-12 21:29:00

Grockle have you contacted your local adult SS? Mine have supplied me with several bits of equiptment to make life easier, including a shower seat, as I can't stand for that long either.

And a big hug for tomorrow. x

Grockle Sun 30-Dec-12 21:46:45

Thanks SirBoobs. I haven't contacted SS... I'm terrified of them taking DS away. I know they don't just come in & take children and there's no reason for them to do that but still. I think because exH took DS when he was a baby & refused to let me see him for weeks. He got all sorts of authorities involved, using my past & bouts of depression as reason to question my ability to parent DS. He then realised that being a parent is hard when you work so handed DS back to me when he got a job offer somewhere sunny.

Anyway, if I can put all that behind me, what can SS do? Can I contact them myself or do I need to be referred to them? I'd love a perching stool so I could sit in the kitchen whilst cooking!

SirBoobAlot Sun 30-Dec-12 22:14:57

I have a stool in the kitchen, a frame on the toilet, a shower chair, and a trolley / tray on wheels to move things from room to room.

They really could not have been more helpful. I called them (I think it was a tip from another disabled mum on here actually) and told them that I was disabled, had just moved in to a new house, and would they be able to help me at all. They were wonderful. Arranged a meeting here because their office was too difficult for me to get to. The woman was lovely. She came in, and I was very nervous. She started off by reassuring me that she was simply here to make my life easier. (I was more anxious because child social services had been involved during pregnancy / early post birth because of my mental health history, though again they were lovely, had no concerns, and closed the case after meeting DS for the first time.)

She took a medical history, then asked me some questions about the things I found hardest. She had a look around, took some measurements, and then told me her recommendations for equipment. She also said if I wanted to and could get permission from my landlord, they could install a lift to help me get DS out of bed, and a handle at the side of my bed for me to get out too. I said no to these, but the offer was appreciated.

The equipment was delivered within five days, the guy came in and put them all in place for me.

She also told me that if I felt at any time I needed anything else, be it other things for the house, or help with support with DS, to just give them a call. No questions about my mental health other than, "Would you like homestart or similar involved to give you any time off?". Again, I said no to that, because my mum is just down the road, and would rather their time was available for those who don't have any local support.

I didn't once feel upset, or embarrassed, or that I was at risk of loosing DS. She couldn't have been more lovely, and matter of fact about things. She called a week after to check everything had arrived okay, and to tell me again that if at any point I needed anything else to just give them a call.

Wow, long rambling post, sorry, but really, I couldn't praise them enough.

fengirl1 Sun 30-Dec-12 22:48:10

Thank you Sirboobalot and Grockle.
Sirboobalot - I'll ask her and let you know! It's so rare but an auto-immune condition. She's very stubborn!!!!!

Grockle Mon 31-Dec-12 04:48:04

Thanks sir boon, that's really helpful. I might try them in the new year.

smilingthroughgrittedteeth Tue 01-Jan-13 10:34:44

Happy New year everyone, here's hoping it brings an abundance of spoons for us all.

Got home from babysitting at 3.30am, am beyond exhausted

SirBoobAlot Tue 01-Jan-13 12:33:16

Happy new year all!

DP got here at 2am (family birthday meal two hours drive away) and we... ahem... saw in the new year wink However, I am now going to pay for it for a week <grumble> TMI here: I miss having sex without being a) knackered and b) in pain afterwards. A combination of ME, PCOS and suspected Endo make DTD less frequent than I would like blush <sulk>

Still, he got up with DS this morning so I got a lay in grin

Grockle Tue 01-Jan-13 15:25:54

Oh, sirBoob, I have the same problem. In fact, the last couple of times we had sex, I fell asleep before we'd properly finished blush Thankfully DP hasn't taken it personally! Even when I feel well, I know I will pay for it the following day and I also fear that I will be left in pain or get cramp in my hip. Does anyone else get that? It hurts! I've found that morning sex is best and if we so a spooning thing, lying on our sides, it is easier on my body. See..more spoons?! Sorry for far too much info grin

I survived last night. It was quite nice, if a little uncomfortable. I fell asleep less than a minute after midnight. My sister said it was as if someone had flicked a switch and turned me off. Knackered today so watching Mary Poppins with DS.

Grockle Tue 01-Jan-13 15:26:31

HAPPY NEW YEAR everyone.

Wishing you all unlimited spoons, happiness and smiles

smilingthroughgrittedteeth Tue 01-Jan-13 16:21:40

I get cramp in my hips too, more my right one than my left, DP always knows when it happens because I suddenly lay very still and start laughing, happens every time we have sex sad

We still have a very active sex life blush any position which involves backwards entry <sorry tmi> hurts so we are limited to either military or me on top, problem with me on top means I get tired quickly.

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