The (not so old) Crocks Cafe

poohbear59

Hi jojo I just found the thread today too.

jaz Best of luck with your new job. Definitely take LWs advice and ask for help as you need it.

jazabelle

Thank you lamewolf and poohbear!

bigzippy

LameWolf wrote: »

Tbh I'd kept a totally open mind (my own wedding was so totally unconventional that I don't ever "expect" anything particular when someone gets married). But you really do look awesome in that dress, and you DH looks like a super chap.:o

Aww thankyou He is! He loves me so much and looks after me sooo well :A He truly is a Godsend.

LameWolf wrote: »

I think there's something called Windows Messenger - is that the same thing? I've never investigated it because I can't type quickly or accurately enough to hold a coherent conversation - invariably have to edit my posts 2 or 3 times before hitting submit; and even then I often see typos I've missed. How do I go about contacting people on it? (Hel's teeth, I'm married to an IT techie and even he doesn't know the answer to that one!)LOL

It is the same thing, or at least an older version of the same thing And pcl is right - the way we type sometimes on there is hilarious! luxury in pcl's typo world is spelt luery LOL:rotfl:;) My point is, don't need to worry about speed or typos. The beauty of messenger is that you can have a chat but also be doing other things if you want/need to -you know? I'm with pcl in that I prefer it to using the phone, and it's more instant than emailing. You can add me too, or I'll add you? I'll PM you the addy.
Essentially you add people's email addresses (that they use for messenger) and when they have it running, and you have it running, then you can talk to each other on it. If they (or you) don't have it running then they'll appear as offline and you can't talk to them. HTH

LameWolf wrote: »

Poohbear glad you've made it to the Cafe. Glad you enjoyed Paris; it's somewhere I've never been.:o

I'm glad too poohbear I have been to Paris tho, in fact, I rang for my GCSE results at the top of the Eiffel Tower!

LameWolf wrote: »

CwtA Hi there my friend - may your flare be a little one.

Wot she said

bevan840 wrote: »

It was me PCL, someone mentioned about DLA and I was unsure if I'd be eligible as I work full time, although at time's like this at the moment a bit of extra 'help' wouldn't go amiss as even driving a manual car is proving difficult so borrowing DH's to get around as it's automatic and can use cruise control so very minimal leg movement needed (apart from braking of course, I can do that )

I do know that you can get DLA whilst working. It's not the same as Incapacity, and as pcl said, it's not means tested.
I'm the same with the car thing tho too - when I first got together with my lovely husband(!:D) he drove a motability car that he was the driver on for his mum (who is disabled also) and I ended up being put on it too as I took her to appts etc. I never wanted to drive my manual little punto after using their big new shiny automatic Scenic, so when DH wrote off my punto I got an automatic (but unfortunately older) scenic - easier to get in and out of, with the height of the seat etc, big enough for a wheelchair in the back without struggling, and having automatic is sooo much easier when I have leg/arm/joint pain I'd love to have cruise control too but that will have to wait...

Jojo_the_Tightfisted wrote: »

Hi guys,

found my way over here eventually. I did wonder if 'the half dead thread' was referring to the thread or the way the participants felt in the mornings, but thought I had better keep to the thread rules and not ask!

LOL No it refers to the fact that it used to be lively and vibrant, because we used to natter on there loads, but then teacher stepped in and told us off for everything under the sun and now we're all put out and don't feel like we're allowed to post stuff on there now without getting told off/closed down. Plus it seems the only thing that's allowed to be mentioned on there is to go on about the illness, rather than anything else, and I don't know about you but a lot of us find it rather depressing to just go on and on about illnesses and not have a natter about other stuff that's going on with us... For now the thread seems to be limping along - hence Half Dead Thread (cunningly named by blackpaw ) Glad you found us though We feel more able to chat without it being "off topic" here.

Jojo_the_Tightfisted wrote: »

Just been shopping in Sainsburys...they have some lovely knitwear this season - I now have a raspberry pink long sleeve Tshirt, a blueberry woolly V neck, a fawn roll neck, a bottle green angora long length jumper and a toasty short sleeved wrap cardie. Warm, vaguely stylish and skint!!!!!!!

How wonderfully descriptive! Made me feel quite hungry and jealous actually lol. Shame I can barely make it out of the house or I'd be off on a spending spree I think! I love buying nice comfy clothes as a mood-pick-me-up. I usually manage to restrict myself to some character knickers or something, that give me a bit of a giggle that noone knows I've got ridiculous kecks on (I even have some with a pic of a cartoon cow with the word "moody" above it ), or even character socks, but sometimes I end up branching out into pjamas, or (character usually) tshirts or fleeces....it can get a bit expensive!! Funnily enough when I damaged my ankle I was wearing a top that says "Here comes trouble" with a pic of Little Miss Trouble on!!:rotfl:

I'm sure there was more to reply to, but I'm a tad flakey and spacey today, I slept from 2am-ish to 3.30pm, which is fab cos it means I've finally caught up on some sleep, but it also meant I went a long time without pain meds so I've had to take all of them within a couple of hours and I'm now feeling a bit high (yet still in some pain:rolleyes:)... my point is, sorry if I'm rambly/weird/not replying to some etc:o

sammy10

Hi, Im sams friend. I stumbled across here by accident. Sam is in hospital after going into status epilepticus last night. No one realised she had hit her head as they were trying to treat the status. She is currently having surgery to remove a clot and stop the bleeding and at the moment her chances of survival arent good.

bigzippy

jazabelle wrote: »

I just went to the dietitian at the hospital (because apparently my pain is all due to my fibro, even though I didn't put on weight until after I had it, but the doctors acknowledging that is just crazy talk.)

It was such a waste of time. I filled out a food diary, and she said it was pretty much okay, told me not to eat so much fruit in the evenings (um, no? Surely it's better than the 5 bars of Wispa Gold I want to be having!) and to really continue with what I'm doing.

I've lost almost 2 and a half stone, so I'm doing okay, I've just hit a plateau recently. The chocolate probably doesn't help though (or the takeaways!).

I saw a dietician a few months ago now...I have to say it wasn't that helpful and I was rather deflated afterwards. I originally went because I wanted to take some proactive measures in trying to identify and/or deal with any food allergies/intolerances and any further advice on dealing with my IBS. She couldn't/wouldn't do any food allergy tests as she said they're not reliable and the best way to do it is go through an exclusion diet, which being frank - I cba with! She didn't really have any further help with the IBS really either, one of those "you'll know what affects you" sort of conversations but told me I should try to have more calcium as I try to avoid dairy because of the IBS.

You've done really well in losing 2 1/2 stone tho! I'm so jealous. I've put on a good 2stone since getting so ill, sort of in the last 2 or so years, and it can really get you down. I tried some appetite suppressants months ago, more for health reasons than aesthetics, but they didn't agree with me (actually made me feel hungryer than ever!) and I had to stop all my normal condition-managing-meds whilst on them. It just wasn't worth it. So I sort of came to the conclusion that for me I couldn't do much about it right now, and had to accept how I am/look now and try to use clothing (when not slobbing about!) that accentuates/flatters the right areas. It's hard to come to terms with tho, esp as my wedding was looming (and I absolutely dreaded going wedding dress shopping!), but I'm hoping that when my ankle heals I'll be able to concentrate more on cooking healthier foods for me and DH etc and make a bit more of a health-conscious effort.
Anyway, I digress, :T to you lassie!

jazabelle wrote: »

I also saw the physiotherapist yesterday. I saw one a few weeks ago and they dismissed me as he didn't know how to treat pain that's in more than one place, so I wrote a letter of complaint and asked to the see the rheumatoid specialist physio I saw before. She is chasing up my hydrotherapy appointment, and then will see me soon to start some very light gym work, and that kind of thing. She's also going to refer me to someone that can help you learn to live with chronic fatigue and put a long term solution in.

So I guess I'm finally getting someone!

I hope all that works out hun. If it's any consolation, one of the docs in the hospital asked me which part of my body my fibro affects:rolleyes: I had to explain to no less than 3 medical professionals what fibromyalgia and/or ME was...:cool:

jazabelle wrote: »

Also I have been offered the job now, so I will be working 4 days a week. So please send me any spare spoons you have, because I'm scared sh**less that I won't be able to do it!

Good luck with starting the new job hun. Remember to make extra time to rest in the first few weeks while you're getting used to doing that bit more, and give yourself long enough to settle into the new routine and workload before making your mind up about whether it's sustainable.

bigzippy

sammy10 wrote: »

Hi, Im sams friend. I stumbled across here by accident. Sam is in hospital after going into status epilepticus last night. No one realised she had hit her head as they were trying to treat the status. She is currently having surgery to remove a clot and stop the bleeding and at the moment her chances of survival arent good.

:shocked: Oh my word!! Please pass on my best wishes to her! I'll pray for her.
I thought she was about to have another seizure, the way her writing went again. And we do worry about her! If at all possible, could you keep us informed?

purplecatlover

right im sneaking off to bed as if i dont sleep ill pay for it. i may be back in an hour or so when i get nored of trying to sleep though.

have a good night everyone.

jazabelle

sammy10 - That's awful. I hope sammy is okay.

kaj70

poohbear59 wrote: »

I took my walking stick with me everywhere and people are curteous just because of that for a start. I used my blue badge as proof to get free entry after being recommended by someone but you just need to say you are disabled and they wave you through.. Make sure you get a hotel with a lift. Lots in Paris don't have them.

If you travel to CDG airport it seems like miles to walk to the RER trains into Paris. In hindsite I think I would ask for more help at the airport.

This website is really helpful
http://uk.franceguide.com/France-for-disabled-people.html?nodeID=1&editoID=18358

and the Access in Paris website is hugely helpful and worth reading. I spent ages pouring over maps and researching routes. It does take a lot of time and energy but is worth it.
http://www.accessinparis.org/

hey, thankyou so much for that, that is really helpful. im taking the eurostar with the children and will be going to garre du nord station, and i have an apartment close by. I am worried about having the energy for this, as i have noone to offer support, its a bit brave of me really, and probably a bit sill, my children arent very young though, so i am hoping it wont be to bad. they are very good and understand that i need to rest often.

I am going to check out the links you posted. thanks very much again for taking the ime to send them

jazabelle

Whoops, just realised I put my pain was due to fibro, and not weight, as the doctors believe. Have edited it now!

bigzippy wrote: »

I saw a dietician a few months ago now...I have to say it wasn't that helpful and I was rather deflated afterwards.

Yeah, they do seem a bit useless to be honest! It’s just basic common sense, like don’t eat chocolate, cakes and crisps. Which everyone knows, it’s just doing it.

It sucks she wouldn’t help with the allergy stuff. The exclusion thing sounds hard and annoying, and I don’t blame you for not wanting to do it.

bigzippy wrote: »

You've done really well in losing 2 1/2 stone tho! I'm so jealous. I've put on a good 2stone since getting so ill, sort of in the last 2 or so years, and it can really get you down.

Thank you! I got weighed tonight and I have officially lost 2 stone, 7 and a half pounds now. Yay. I have this huge motivation of wanting to prove the doctors wrong! They just look at my weight and dismiss me. I want them to look at my symptoms, listen, not just dismiss me.

Losing weight is so hard though. And while I’m pleased with what I’ve done, I’ve still a very long way to go. I couldn’t take the appetite suppressants as I was on anti-depressants, but I gave up on those so may ask to try them again.

I think constant pressure doesn’t help. Sometimes I think we’ve got more important things to think about than our weight, you know? But good luck and I hope you feel better soon!

bigzippy wrote: »

I hope all that works out hun. If it's any consolation, one of the docs in the hospital asked me which part of my body my fibro affects. I had to explain to no less than 3 medical professionals what fibromyalgia and/or ME was...

Argh, such ignorance. It seems not only do we have to battle every day – battle to go on, battle with our pain and to get appointments and referrals, when we get them we face such ignorance! The pain consultant I saw last told me there was no such thing as fibro. Others have given me wrong advice, or information. My GP said muscle relaxants don’t help with Fibro, which is rubbish. I’ve been told with Fibro I need to exercise SIX times a day! They don’t seem to realise that just getting up exhausts our energy!

bigzippy wrote: »

Good luck with starting the new job hun. Remember to make extra time to rest in the first few weeks while you're getting used to doing that bit more, and give yourself long enough to settle into the new routine and workload before making your mind up about whether it's sustainable.

Thank you so much! I will do, and I really hope everything works out.