Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

That all sounds very like me, giraffes. My tonsils are badly scarred.

It's Saturday so I am struggling to function. I will crash this afternoon and sleep which means I don't see DS. Again. I only see him on Sundays really So tired.

I haven't eaten bread for ages - not really a conscious decision, I'm not sure how it happened. If I could stop eating biscuits and cake, that'd be great.

Hope all poorly people are better.

Quality not quantity grocky. Some people are with kids 24/7 but are always on phones/laptop so although physically with them they are not WITH them iykwim? As long as you can squeeze in a game of something (like a board game not footie!), read together, watch something together, chat, walk belle or something then that is quality time. Do you ever swim? I know some people find they get more bugs after swimming. Just wondering if you could go and lounge about in the pool (I mean like a warmer teaching pool rather than a freezing deep pool) and he could swim about, could give him challanges etc. I love the water and will often take the kids even if am feeling a bit crap as I like to relax in it and helps muscles. One a bit further away from us is SO warm, has specially heated teaching pool so I took wee one there when I had sore neck from car incident, she swam about and I soaked!

I am a veggie BUT if there was enough evidence that eating a certain type of fish once or twice a week would be extremely beneficial then I would consider it as right now am so fed up and feel so crap. And that is something I thought I would never say! I think avocados are good aren't they? I don't like them but can disguise them in smoothies with bananas and milk.

Today was feeling better - had a bit more energy, cough lessening. I had a nap earlier sort of late afternoon time and have woken up sneezing, running nose and scratchy throat - for fucks sake! :( RAAAAAAH!!!

Got vitamin bottle right beside my bed so I remember to take them with night time meds.

Oh and when i was trying to build up a case to get mine out I went every single time my throat as bad - just so they could physically SEE it. Once I got referred to ENT they agreed easily. It was getting the GP to refer that was the issue they made out like ENT wouldn't be interested!

It was the best thing i have ever done. I feel so much better. If I could get rid of asthma for ever but have my tonsils back then i would keep asthma!

giraffesCantMakeResolutions - I never had anything as bad as that with my tonsils.

giraffesCantMakeResolutions - did you ever read about enzymes in bread, newfangled bread doesn't have them or something, but oldfashioned bread can be easier to digest.

Only if you let dough ferment for long enough can naturally occurring beneficial bacteria work to make the bread more digestible, nutritious and tasty. Most British bread - even the types fortified with supposedly 'healthy' additions - is made far too quickly for these bacteria to have a chance.

Agenda for the ME conference

giraffes Sorry to ask but what is your diagnosis? Only because there is very strong evidence that oily fish 2x a week is very good for inflammatory types of arthritis.

Giraffes, We do need to swim again. I get so cold in the pool though so can only manage 20 mins or so. My old school have a hydro pool but staff can't use it which is a shame. It was lovely and my body stopped hurting when I was in it.

DS & I went to the cinema this morning then played on the beach for 10 mins. Then did homework, messed about in the garden and are now playing on the Wii. I do try to do stuff. I just feel so groggy & drunk all the time.

I don't know what to eat in the evenings... DS doens't eat at home so it's just me. I need to eat decent stuff that doens't involved cooking or meal prep New foster boy arrives next weekend so that should make me cook proper food although in my experience.

I looked into working 2 days a week but because that would only be 12 hours a week, I'd get no benefits so can't do that. I think 20 hrs doing office job would work out better because at least I'd get benefits to bump up my income. Lots to think about.

HOw is everybody?

grockle ah yes I thought pool might get too cold. Some ones are used for baby swimming lessons and so have to be kept warmer than others, maybe worth looking in to. Is the boy from the same school as they shouty girls?

Been to ALDi today and got loads of fruit and veg for in the juicer, veg to make soup and fruit for smoothies. So going to make sure am eating loads of fruit and veg a day. Got my vitamins too.

Went to a friends for lunch today and she made home made soup and crusty roll...few hours after eating the white bread roll had heartburn and reflux again. So def cutting out bread! Thanks kate will have a look at that link.

candy I have brittle asthma, which is severe asthma and have frequent chest infections/allergic related asthma. About 5/6 years ago I had a bad episode of tonsillitis/virus/ear infection thing - all came at once and have PVFS afterwards for months. Have always been a ill child, was born prem and was off school lots with various bugs/throaty things etc. Number of throat infections has got so much better since have had tonsils out.

There is an article here about how Epstein Barr virus is involved with autoimmune illnesses like lupus, rheumatoid arthritis, multiple sclerosis etc, if your brain is working it's quite readable.

The way the Epstein Barr virus has learned to survive is to infect us and stay hidden inside a subset of cells (B cells) for the remainder of our lives........

the strategy EBV has developed to keep its host B cell alive but latent and hidden from attack by the immune system is by constantly poking the immune system's low level interferon response, which is akin to keeping the immune system on the edge of its seat and ready to pounce................

In that hyperalert state, when the immune system detects a new threat its response could be excessive, which could push the individual over the edge into autoimmunity...................................

Many studies have found a strong familial component in autoimmune diseases. In a healthy host, EBV infection is tightly controlled by a subset of cytotoxic CD8+ cells, which destroy the infected cells. As Pender continued his research, he then suggested that this genetic component could be an inherited deficiency of CD8+ cells.......

When an individual with that genetic background is infected with EBV, a greater number of B cells harboring the virus will remain in the circulation, he said. And because 20% of B cells are autoreactive, those cells could begin making potentially pathogenic antibodies that then traffic throughout the body, lodging in target organs and, in turn, producing target-specific antibodies..............

I'm struggling a lot. My rheumatoid has flared up and I'm having neurological (numbness and tingling) side effects from the drugs. I need to somehow make it through the next few months with my sanity intact if I want to successfully complete my degree and get a job.

CFSKate have you ever read anything about chronic tonsillitis and adult onset asthma?

I read a journal once about it but never heard anything else.

I have no family history at all of asthma or eczema. I have both, both started as an adult.

candy sorry to hear that :( the numbness and tingling sounds horrid - where is it? (I mean like hands/face/feet?) What is your degree in? I am studying just now too - hard work sometimes when ill isn't it?

Very busy day at work today, managed well. Apart from a scratchy throat and stabbing ear pain. Also feel a bit shivery tonight. Have taken myself off to bed. I run a toddler group on a Wed morning and it is meant to be our meeting tonight - with all the people who run it on different days. But it was set to start NOW - half 8! Pah! I started work at 8am - 6pm. I had planned to go but at 7pm I knew it wasn;t going to happen! In bed with a cuppa now.

I smashed up my ankle & lower leg 3 years ago & yet again I can't sleep through the pain. I'm going to have it all permanently fused to hopefully stop the pain, but I don't have a date yet. I was going to get it done 18 months ago but BC got in the way! Has anyone got any relaxation techniques for overcoming chronic pain?

rudolph, this chap is! I believe! considered the guru of pain management through Mindfulness/ meditation. I have the CDs and an app from iTunes which was about £6. Tbh I generally fall asleep at some point! I guess that means they're helpful!

www.amazon.co.uk/s/?ie=UTF8&keywords=mindfulness+jon+kabat+zinn&tag=googhydr-21&index=aps&hvadid=38884808154&hvpos=1t1&hvexid=&hvnetw=g&hvrand=2740862611344190043&hvpone=&hvptwo=&hvqmt=b&hvdev=t&ref=pd_sl_5xr5l84grf_b

Rudolph, have you tried hypnotherapy (proper stuff not run around on stage like a chicken)? I did it last year when I was really desperate and have a couple of good CDs from it to help with pain/ insomnia.

giraffes Fingers and feet! I do get nerve pain in my jaw but the joint is in a bad state, so there's nothing much to be done till it needs replacing. I'm doing a social work degree; so it's a 9 to 5, five day a week course. What are you doing? It is really hard, my uni and placement are very supportive fortunately.

Morning all :)

candy am doing a post grad in play therapy, so like you I have a placement too. I love it but is full on!

Giraffes I got pins and needles in my hands and feet for a year or two ( on and off) after I had pneumonia (long hospital admission). It was at the beginning of my CFS/ME. I really don't know what caused it but I was really very unwell at the time (and on high dose pred for a long time), and not really able to function upright, so it was just another symptom of debility at the time. Is your O2sat down? Hope you are getting on top of your chest infection. Good levels of vit D are helpful for asthma, but there are vegie sources I think. I took a comprehensive range of supplements in a bid to get more well, guided by a MN nutritionalist (thanks AlmondFinger) - and it did help. I tend to only retain information I read that applies to me.
Grockle it is difficult cooking for one when you are exhausted. I try to freeze extra portions when I make a stew or soup so I can just grab and warm. We have a microwave so sometimes I just microwave a pot of vegetables and eat with a slice of cold meat, left overs or an egg. It probably harder for a vegie. Hope the FC is easy going. Fingers crossed for you.
Candy sorry you are struggling. Rudolf hope you get a date soon. Are your DC very young?
Thanks Kate for the link.

Interesting links, CFSKate -- I'm wondering about the bread one. DH has gone gluten-free after we did an experiment last spring. He felt mildly better (less stomach upset; I actually felt worse). Yet he's been complaining again about feeling ill after his morning gluten-free toast recently. But I used to make my own bread in a breadmaker, as DH has sensitivities to many things found in commercial bread (e.g., soya, vinegar). I wonder if home-fermented bread would be better for him? The usually use the breadmaker recipe that takes 5 hours. I wonder if that is enough time? We don't put anything but flour, butter, salt, sugar, and yeast into it.

I'm struggling along. I need to change something, because I'm not getting a full work week in and at some point that will become obvious. And now my SPD from pregnancy has flared up, and I've been using a walking stick all week. It's come and not-quite-gone ever since DD's birth, but hasn't been this bad since the pregnancy (although it's still miles better than it was -- by the end I couldn't even sit up, much less walk). I couldn't think for the pain and went home from work early yesterday and just slept (but at least I slept; the pain had been keeping me up at night, but I think the sleep-deprivedness finally overcame it yesterday afternoon). I really feel like just giving up for today too, but I really can't do that.

I'm feeling really down about myself. I started the new year with a plan to be healthy and lose some weight, as I super-stressed this autumn at work and put on quite a lot. I've been eating healthy (no more sweets and biscuits at my desk, for example!), but I'm sure I need to add in some activity as well. But how I am going to do that with lowered mobility? My leg was collapsing under me even during my morning tai-chi today, and that the last place it started to hurt during pregnancy. I hate that I can't fit into most of my clothes and that my feet hurt from too much weight on them and that I look so dumpy. I want to do stuff, and it seems like my body is fighting me.

And ugh. Some road-bumps in the house sale. I really want it to go through. I've been getting all excited about the idea of a cleaner -- we're living in a tip and it would just be so much better if I didn't spend all my spare energy and then some not managing to keep the house clean. Trying not to stress too much.

Sorry, this was all pretty negative. Spoons to everyone :)

Hello - how has everyone been this weekend?

I have spent most of it asleep!

Sat and Sun I have had no wheat - and no tummy cramps or indigestion or reflux...so far so good!

seen in chat

www.mumsnet.com/Talk/_chat/1993551-Dealing-with-children-when-parents-constantly-struggle-with-tiredness-illness

Wow, play therapy sounds amazing.

There are lots of things I'd really love to do as a career (I've never had one... just a job) but I have no idea what I'll end up able to do. I don't want to make any decisions yet, and the fact I dropped out of my degree doesn't help either (not allowed back to OU). So my life is on hold really. It's lucky that my just-a-job is enjoyable at least so I don't need to worry just yet, and I'm only 27 so hopefully have a good few years left!

I only missed 2 days of work in the end which is pretty amazing (although obviously would've been more if I hadn't been on leave when the infection hit). I'm really chuffed that I bounced back a lot quicker than before. Well maybe not so much bounced as crawled, but still, progress. I'm still a bit wobbly though so taking things a bit easier.

Well done on dropping wheat giraffes. I am trying to gradually eat 'cleaner' and the few changes I've made so far seem to be helping. Just ditching a lot of processed stuff and less carbs especially stuff like pasta and bread. Trying to have more protein and good fats too.

Are you going gluten-free giraffes? I'm actually thinking of reintroducing breadmaker bread only for DH after reading CFSKate's link. When he did his gluten-free experiment, I think we hadn't found the commercial gluten-free bread yet, and previously he was usually eating supermarket pastries instead of my homemade bread for breakfast.

Although, frugal, I think a career can be overrated. I've got one, and I find myself wishing I just had a job so I didn't care so much it's one of the things that makes me really work myself into the ground when I really shouldn't, often in isolation because I really don't have energy for socialising as well (if I made it to work, I really can't take the 30min for chatting over coffee it uses up far too much energy and accomplishes nothing :( And even chatting over lunch can wear me out so I can't work in the afternoon, so I end up eating alone at my desk with MN). I think the most important thing is enjoying the people you work with -- assuming that what you do is at least innocuous enough it doesn't make the whole thing unfun. And then I don't even interact with the nice people I work with :( But play therapy sounds quite intriguing to me, too!

I've taken today off work, only emailing in morning and just now. Weekend was good but tiring DH was away, and I went to DD's toddler group on Sat and a friend came over on Sun. It was too much to do, as I also cleaned the absolutely horribly messy house Fri and Sat and Sun morning. But I hadn't seen her in ages and I didn't want to miss the chance. Oddly, DH being away seemed to make things easier. I guess maybe because I didn't have to take care of him too.

Been freaking out that DD doesn't get enough social interaction. My Dad kept asking over and over on Sat, "How much does she get to play with other kids?" And all I could say was she goes to toddler group once a month, and occasionally plays with other kids at the park and sometimes the neighbours. I completely forgot that we go swimming once a week, too. She's too small to really play with other kids just yet, but she will play beside them. And the older neighbour kids play with her. But even that seems so too little. But I and DH just don't have energy for any more.

Please tell me someone else struggles to lose weight as much as me? I am very overweight and I need to lose a fair few stone for my health. I am distraught that I have allowed myself to get so huge. My health means that exercise is not easy; although I do make an effort to do what I can. I lead a sedentary lifestyle which isn't going to change much unless a miracle happens. I am eating low enough calories to lose weight but it's painfully slow and I get so frustrated. I am losing weight (and I know every pound counts) but it's super disheartening. How am I meant to keep motivated when it's like watching paint dry?!