Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

It's really a lottery with doctors, IME. I was SO lucky with mine, he asked about my very sketchy history and basically trusted me when I said "this is different". In fact (and I've said all this before I think so forgive me for repeating ) I'm pretty certain that's why I got referred to St Barts instead of my more local specialist clinic. There are a few different sets of diagnostic criteria for CFS, and one (I believe it's the Oxford but I may be wrong) does not allow diagnosis if the patient has had a previous major episode of depression so I wonder if my doctor knew my local clinic used this, and deliberately sent me somewhere else so I wouldn't be fobbed off. It is pretty disgusting IMO that some people will be told they can't have CFS if they've had major depression in the past - especially given it's now understood that mental health issues, and poor stress response etc, make you more vulnerable to CFS!

Arbitrary,im so sorry (((((HUGS))))) mens timing is shit isnt it.

Hi all as for the depression thing, i too have been depressed ( Im not depressed now) but it as been banded about very frequently in my illness, recently i was having CBT counselling and was told week on week my depression score where high......time and time again i tried to explain i wasant depressed but the fatigue stops me from looking forward to things, (mainly because im too frigging tired, or in pain and dread been out socially and having to make even more excuses to come home!!!) in the end i ditched the counselling it was more work than it was worth, Nevertheless, some AD do have nerve pain relief as a bi product, i take duloxetine and forgot one day last week, my legs took the flack and stopped working properly i was in agony for the whole day.

the trick with pain relief is to take it regularly,because if you take it as and when it takes longer be effective if you take it regular it doesnt dip into the pain level, so is more effective...( WISH I COULD DRAW YOU A PICTURE, THATS WHAT I DO IN WORK TO TRY EXPLAIN THINGS) sorry didnt mean to shout.....

im buggered today, not sure why but my ears feel like they are touching my shoulders im so tense!!

Thanks all. I'm doing ok, considering. In these circumstances I think crying all day is the appropriate response.

It mostly seems to be a case of DH doesn't love me, and probably never has. I think he is depressed, but he also does not want to be with me. I know he really means it because he isn't putting up a fight about custody of DS2. And he knows that I have to move hundreds of miles away with the kids (so that I can have a proper support structure around me, and actually get to work without a ridiculous commute). He must really, really not want to put up with me if he's willing to live hours from DS2.

His timing is beyond dire. He could easily have decided this while I was we'll enough or before we bought a house (and spent lots of time and money making it lovely - I thought this was going to be the house my kids grew up in and where I grew old). All those hopes and dreams...

I feel awful for the kids. DS1 in particular has been moved around so many times. This was supposed to be the last move, and his final school. But, we can't stay here (I would if I could get to work; I can easily afford the mortgage on my own). Poor DS1 has to move school systems (again), which will be particularly horrific and I need to restart the OP referral process for him once we move. DS2 was supposed to be starting school here in September (August baby). But now I'll need to find a nursery place for him and he won't start school until August 2014 in Scotland. It's more expense that I don't need and he'll be very disappointed about having to stay at nursery. I have to move by August too. I cannot have DS2 start reception down here and then have to go back to nursery. He'd be devastated.

I have no idea what DH is going to do. He doesn't want to stay here on his own. There are several jobs he can apply for elsewhere, but that'll just take him even further away from DH.

I don't have anyone down here to talk to. We've had to move so often that I haven't been able to make any proper friends, certainly not the kind you sob your heart out to because your world is falling apart. More the take your preschoolers to soft play together type of friends. I don't want to talk to my mum either (she's difficult).

I think I will start a relationships thread, once I've gotten up the courage too. Thanks for listening and sympathising.

well in RL you may not have anyone physically about but here in MN world you have friends and we have poured our hearts out about alsorts in the past.... dont be alone, alot of us have been in this situation ( i moved 100 miles away from exH 18 months ago, and left my 13 year old DS with his dad, because he didnt want to change school or leave friends...i was devastated, i still am, but i have poured my heart out on here and had nothing but supporrt)

Just do 1 day at a time.... tomorrow is a new day, with a new challenge, im so sorry the timing is shit.....

Wow, that was brave and selfless of you belle. It must have been so hard.

DS1 will probably be looking forward to moving despite everything because it'd be going 'home' (where I grew up, where he was born and lived for 5 years, where his dad lives, where his grandparents live, where he still has the accent despite now being 12). Moving schools will be tough but he gets some pay off.

Ds2 is only 3 and he'll be moving away from his dad, so it'll be far less positive for him. He'll benefit from seeing my mum more often and adapt (because that's what 3 year olds do). I couldn't leave him. He's so small and I need to look after him.

DH did try to suggest that he had Ds2 and I took Ds1 but he's agreed that isn't fair on me. This is not my decision and I have to move or give up my job (which would mean I couldn't stay in this house anyway). It's impossible to commute and be a single parent. So DH has conceded that I will have both children.

Arbitrary, I will never understand men who don't want to fight for their children. DS's dad wanted sole custody of him & fought & fought me to get it... until he had a job offer in California. Then suddenly he didn't want DS any more

Like you, I've moved so much that I don't have any close friends here, just lots of aquaintances and I never want to tell my family until I have accepted what is happening. That's where MN is good. Belle's right, it's a one day at a time thing. The DC will be ok and you will too.

What a nightmare about school/ nursery for poor DS2, it would be ridiculous for him to have to move from reception - nursery.

I don't think it's that DH doesn't want custody of DS2. I think it's more a case of him being realistic about the situation and how completely unfair it would be if he did. This way the two boys stay together (and they adore each other) and I am a good mother.

It might be different if it hadn't been entirely his decision to split up. But he can't unilaterally shatter my world and then take my son away (and it would be a case of that, as I'd hardy ever get to see him). He's got plenty of faults but he isn't a total arsehole.

He is pretty devastated about me having sole custody of DS2. But it's the right thing to do for everyone (where there is no possibility of shared residency due to distance).

Good, arbiitrary. At least DH is realistic.

Fuzz, you sound like you've been really lucky to have such a great GP. I'm amazed that once you've had depression, you are not allowed to have any other physical illness. And we're bound to score highly on a depression scale because the physical illness makes it so hard to exist.

I posted this else where and was directed here, hoping for some advice.

I have been off since oct with this. Occupational health advised me that once I was up at home I could start a slow phased return to work. Work said they would give me a maximum of 4 weeks.

I have been up since Thursday and my line runs out this week. I feel a lot better than I did but get waves of feeling bad during the day, they pass if I rest.

When I feel good I feel ready to get back to work. I am just a bit apprehensive. Just wanted to hear from others. I don't want to set myself back but would like to go back. I am a teacher, no place to hide if in suddenly feel unwell.

Welcome icepole! It's lovely (IYSWIM) having lots of new people.

Do you think 4 weeks will be enough for your phased return? It doesn't seem like much if you've not even been up at home for a while. I was given 6 weeks, although I actually only did 4 and then had annual leave anyway (DH had surgery). I then had reduced hours again (but due to the surgery) and got sick again - I was off another month and then had another phased return but they only gave me 2 weeks that time. It felt like a punishment for 'failing' the first time! I have just managed 2 weeks of FT which is the most I've done since July. I really wish I'd taken a long time off rather than just a month at a time and then bits and pieces.

Re: the depression thing, I am definitely depressed anyway as I still have a lot of issues from my past/social anxiety etc that I've never dealt with, but I do feel lucky that the specialists I'm seeing are looking at the full picture - although they are primarily 'interested' in the CFS, they want to help me deal with the rest as well as they see it as linked.

MN is so great. I feel really well armed if that makes sense, I have learnt so much about my illness thanks to people here - the specialists seem surprised I knew so much. I really wish we could all meet, I am crap at making friends and don't have anyone really close here despite having been here nearly 5 years. OTOH at least we all understand each other and that includes not being able to travel etc - much easier than explaining/excusing ourselves to existing friends who might not 'get it'.

Welcome icepole. My work only do a 4 week phased return too - am a teacher also. What do you teach? The LA say that if you're not able to build up and be back at work on normal hours after 4 weeks, then you're not ready to be there at all. When I went back last time, I did a couple of mornings one week, then all mornings then 2 full days & 2 half days before going back to my usual 4 full days. I lasted about 7 weeks and am now off again but trying to go in tomorrow - don't know why, I have my lead suit on. I think that's what made me pass out last week...if I'd told my boss that I keeled over because my lead suit was too heavy, they'd probably have brought in the men in white coats.

This is such a wonderful group - it's gone far beyond my original moany OP all those months ago.

I'm waiting for DS's childminder to drop him home (she'd fed him too!) so we can go to bed. He loves snuggling in my bed & having a story which suits me perfectly!

Arbiturary, my exH was and still IS selfish, i too have now moved home, but i stayed in the village he lived with all his family and friends around(non of which spoke to me and i became very isolated in a village i had lived for 15 years) for a year after we split, the reason being he said i couldnt bring the kids home with me, andhe would fight me every step of the way and use my illness against me.... It was my psychologist that made me realise ( and in a way gave me the permission i so needed to come home) that my exH had no hold over me and infact if i had stayed there i would lose my kids anyway because my illness would get worse and worse due to my internal conflict, and desperate need to be around my own family and friends. My exh knew that i would never drag the kids through court. So i got very brave, and told him i was coming home and the kids wouldnt be dragged through court because we would ask them where they wanted to live, not who they wanted to live with. Hence my beloved DS chose to stay with his friends and at his new high school, my DD choose to come with me, and she as settled really well. Its hard really really hard, the kids are split (might be a blessing in disguise) and i miss DS daily, but we do have a fab relationship, i am still very involved in his life and treasure every minute i spend with him..

So stay brave,make you happy not your DH, your right your youngest DS is far too young not to be with you, thats where i went wrong my exH promised me we would eventually move closer to my family, but he told me he never had any intention of doing so when we split.....TWAT !

Whoops sorry Icepack for being rude, welcome......

I am still on phased return i went back to work in November!!!! im back to 24 hours and soon to achieve the 30 hours im contracted... im a nurse so no hiding place for me either... work with occupational health do it slowly, and best wishes in your returning....

Alot of us on here love our jobs but struggle daily to do them.. but the support here is fantastic, stick with us...

Welcome ice pole. Sorry your work are being inflexible about a phased return to work.

Belle: that was incredibly mature and reasonable of you. It is proof that you really do put your children first.

I ate a couple of pancakes earlier and now I feel really queasy. I don't understand what DH is up to at all though. He keeps coming up and asking me for a hug, he offered to have sex with me to 'make me feel better' , and he stood in the doorway while I was getting changed to have a bath with DS2 until I told him to go away and shut the door. He doesn't get to dump me and have any access to my body. It's all or nothing. Then, after we'd put DS2 to bed he asked me to come and talk to him in the kitchen where he asked me if I'd be willing to sell this house and get another one in this city. That's just cruel, considering that he's already made it clear that he doesn't love me (apparently I fill him with bitterness). He was just sad that his decision to split up means he won't get to see DS2 every day. He'd better go to work tomorrow and leave me alone in the house.

MIL texted me to ask how it went at the GP's. I didn't know what to reply. Turns out that DH has already told her (obviously a version of the tale where it sounds like he's a poor ickle hard done by soul). I have no idea how he can be at the telling people in RL stage of this. I guess it's because he's not broken hearted.

I'm off to start a thread in relationships where I'm sure everyone will get annoyed on my behalf. I think that might help me a bit.

I am in awe of Belle... what a terrible position to be put in. I know it's really hard now but I am sure it will be worth it... and the fact that your relationship with DS is so good is testament to how amazing you are. I live in fear of DS announcing that he wants to live with his Dad. I don't know what I'd do.

AU, your DH sounds like he doesn't know what to do. I laughed at the offer of sex to make you feel better, sorry! Only a man would think of that. He's obviously had time to think about all this... it's not a big shock for him because he's been mulling it over and talking with his mother already. But for you, it's very raw. Be clear about your boundaries.

Oh I was clear about my boundaries. I told him uncategorically that we will never have sex again. He did apologise for it, but really it's not difficult to anticipate that an attempt to have sex would go down badly.

The thing about DS2 is that I think in his planning he seriously thought I'd say, 'oh yes, you should definitely have him and I'll just move away' or something. He also told me that he thought I'd be really happy when he told me. I think his head is still up his arse.

oh please dont be in awe, i feel like the worst mother in the world, but my kids are my world..... and i was a child from a broken home, and it ruined my life, and ability to trust men ( or maybe thats just cos exH was a TWAT!!! whoops there is that word again) i promised id not ruin my kids life in the same way, so maybe im just ruining it in a very different way..........

AU,if i had my time again id just pack my backs asap and go... let DH sort the house out, its his choice, i tried to be the reasonable one......i became the mug and in turn missed the chance to bring both my kids home....if i had brought DS home when we split up, as hard as it would have been he'd be here with me now...

ICEPOLE im so sorry for 1. not welcoming you along initially and the 2. calling you ice pack......CFS brain and PMT i fear....

No. It's a very good mother that can do what their kids want even when it's not what they want. Truly.

I'm not going to do anything too quickly though. I am taking both kids with me no matter what. It's better if I let DS1 finish out the school year here and then start school up in Scotland in August (although he'll get very little in the way of a holiday). I don't want to make it harder on him than necessary. And it gives me time to (a) turn down DS2's school place, which will mean he'll have no school to start and (b) organise a nursery etc up there. It's also better to sell the house and then move. I know both areas well enough to buy straight away and it'll be better for the kids to have a more permanent home. I should be able to afford to do so.

My parents were divorced too & I promised myself that I'd never do that to DS. So, when he was 4 months old, I became a lone parent

Perhaps 'in awe' wasn't the right term... I know you didn't chose that but I think a lot of people wouldn't have given DS the choice... and you did. Even though it was not what you wanted. That's not an easy thing to do & I'm sure many people would not be so selfless as you.

My parents divorced (very messily) too. And I became a line parent when DS1 was less than 6 weeks old. It was all very amicable though, and always has been. I really feel like I've let the kids down in all this.

Thanks all for the welcome.

Belle I quite enjoyed ice pack, made me laugh.

Occupational health wrote a really supportive report saying that I should be phased back over 6-8 weeks with timetable modification until the summer. School say this is just a guideline and they can only give me 4 weeks. I am not at all confident I can be ready to be full time in 4 weeks, when I feel ok it feels possible, when I feel unwell it does not.

I did too much today, now feel grim. I feel under pressure to go back. I feel that people see me and I am ok. The problem is I don't stay ok all of the time. If I don't do much I actually can feel pretty good and then I feel bad for being off.

Grockle I teach drama, so very practical subject.

Does anyone else have on going pain in their throat/glands?

Yes Icepole I have a nearly constant sore throat and swollen glands and sinuses. I have not found any magic cure as yet! With respect to going back to work, I would delay until you feel more confident that you could cope with a whole week at work. I was advised to wait till I felt well enough to run for a bus. I thought that was rather over the top so went back to work when I was very far from being able to run and have never got back to managing my previous part time hours (or being able to run for a bus fo that matter!). I did not realise I had CFS at the time.
I had my BP measured (by ENT) both laying down then suddenly standing, and it dropped dramatically. So I have OI for sure. I suspect I have had OI for years and its just more obvious now due to CFS. I had lots of other balance related tests ( just as well I had not had breakfast) and found I could not keep my balance walking heel to toe with closed eyes at all - any one know what that means. I have to go for an MRI and am still waiting to see cardiology about tachicardia ( I think PoTS is more about Tachicardia than falling BP). Any one else have balance difficulties?
Arbitrary and Grockle I am so sorry. CFS is enough to deal with.

Thanks Magso, yes it is my glands that are sore. I could probably run for a bus but I wouldn't feel well afterwards! There is a long weekend here, will wait till afterwards before I decide. I actually don't think I am ready but I feel everyone thinks I should go back.