OS ways and Poor Health

Wednesday2000

pollyanna_26 wrote: »

Wednesday We discussed fibro groups earlier in the thread with mixed opinions . The one I tried made me want to run for the hills . It was like a competition for who was worse than everyone else . Not helpful , supportive or even a couple of hours chat that wasn't pain centered . I suppose the reason I wrote hints and tips in the OP is because we have to learn a different way whatever brings us to the thread . I would prefer to help someone stop scalding themselves trying to drain a heavy pan of potatoes than sit as I did in that group listening to people scoring their pain levels 1-10 . That's one you do to a medic not the rest of the world .

Oh, that was on this forum. I do remember reading that, but I thought it was on the UK fibro forum, unless quite a few people have had that same problem with the meet-up groups!:p

I thought it would be more like support as in you meet up and go and get a drink or go out to the cinema or something and support each other through talking about everyday things, not people meeting up and talking about their condition!:rotfl:

Wednesday2000

lessonlearned wrote: »

Wednesday there is a website called Healthiculture.com which you might find helpful. They send out a daily newsletter, lots of tips and knowledge about fibro, arthritis and similar. I have picked up some good tips and am learning a lot.

Yes, I subscribed to it and it is very helpful.:) I got a message about green tea and pain relief today and I'm drinking a cup now.

Wednesday2000

I feel very out of touch with society as I have hardly been anywhere over the last few years. I stopped seeing all my friends and I feel weird getting in contact with them after so much time. I used to go to bars, cafes, concerts, nightclubs etc.. with them and I haven't done anything since my husband was diagnosed in 2013.

I don't know if I thought that I shouldn't enjoy myself by going out socially while he was ill?

I didn't end up going out to London for the meal the other day as it felt too soon after the terrorist attack.:(

I think going into central London for therapy will be a good thing as it will help to build up my confidence again.

I'm going to get there early tomorrow and go to look around a market and in a charity shop, then go to the therapy appointment and then afterwards go and sit in a cafe and eat lunch on my own!

I need to try and get used to going out "normally" again after being in the house so much.:)

pollyanna_26

Wednesday Often friends and often family will fall away over time .It's the walking in the shoes thing . Most people do not have any idea at all . I lost someone I considered a close friend for many years a long time ago after she told me I was no fun anymore and should leave my youngest to sort herself out . I lost my temper that day as I never had before or since .
There is a lot of stuff known only to dd, our Dr and I that family are totally unaware of as there was too much "make an effort " and other comments aimed at her . One daughter told me to walk away and leave her to sort herself out . As I replied who the h*ll does that to anyone especially their own flesh and blood .
Before the mobility problems really took hold youngest volunteered in a bookshop run by a local animal rescue . She had much in common with the male manager as he himself suffered deep depressive and anxiety episodes . He is still a valued friend for us both .
She only did a few hours a week and was tucked away upstairs . A lover of books all her life she would assess the new donations and take out those with a higher value if sold online . On a quiet day she would spend a few happy hours sorting the books back into the Dewey system as we're both a bit obsessive about that :rotfl::rotfl:
Many years on her job is still open as far as our friend is concerned .
Find something you love and when you feel mentally ready dip a toe in . Something as simple as reading to someone in a care home or popping in for a cuppa and a chat . A charity shop or like Elona a library volunteer the possibilities are endless when you feel the time is right for you . There may be local people with something similar to the group LL has joined . If you have a local library there is often a notice board pointing you to all sorts of things .

The main thing is to learn all you can about your fibro as you no doubt did with the borderline . Get the help to manage it and then shift your mind to working out what will make you as happy and content as possible .
Hold in your mind Borderline and Fibro are not you . They are conditions . You are still you and you need to focus on that .
polly

Prinzessilein

Hi all!

Wednesday...I think that one thing that helps with ANY condition is to learn all you can about it...and then to take the time to assess how much of it applies to you...and in what way...my attitude is that I have a number of conditions, and I have to live with them - if I am going to be the boss of them (rather than let them be the boss of me which is NOT gonna happen!) then I need to learn all I can about them.

One niggle I have is when people make assumptions about me because they know someone 'just like me'!....Mum still snarls at the memory of a woman who was told that I have Autism 'Oh yes, I know ALL about that." said the stranger, "My cousin has a friend with a teenage son who has Autism - he has the mind of a three year old. SO sad that they will never be of any use isn't it."...thankfully, I wasn't there at the time - it just so happened this was at the time that I was still able to work - as Head of my Department!!!!

My back-pay of PiP has finally come through!....I have treated myself to a new heated pad ...sort of like a water bottle, but this one is a pad that is charged on the mains before being popped into its fleecy bag....I already have a microwaveable wheat bag....heat is so soothing for my pains , I felt it was a worthwhile investment!

The chat about 'support' groups for social anxiety made me smile! When I was first diagnosed with Autism I was assigned a social worker to give me initial support...he was terrific in many ways - he helped me with things like getting moved into suitable housing, and getting my bathroom-to-wetroom conversion application through REALLY quickly.....however he also ran a support group that he wanted me to join - it would be terrific for my social anxiety he said, just a small group - between 8 and 10 members...some of whom had carers who attended and two or three facilitators!!!! If that was his idea of a 'small' group I shudder to think what a large one is!

I have had a quiet afternoon...knitting snowmen for Christmas decorations...9 done so far of the dozen I had planned...so nicely on plan!...I get days when the fingers don't allow me to hold the needles - so I started them good and early!

LameWolf

Urrgghh - Brainfog! There's a number of points I want to answer, but now I've got the Reply Post screen up, I can't remember what they were....:rotfl:
Ok, in no particular order.....

Pain-relief pens: I shall await the verdict with interest; I'm a real Gadget Geek, and adding something that can go in a handbag to the arsenal sounds like a plan.

Stopping someone scalding themselves lifting heavy pans: I recently purchased one of these: https://www.amazon.co.uk/gp/product/B002AQEK9Y/ref=oh_aui_detailpage_o07_s00?ie=UTF8&psc=1
and I think it has made my kitchen a lot safer for me!

Support groups: I did join an online Lupus support group when I was first diagnosed, but they were very determinedly Christian-based, and I wasn't welcome; I haven't bothered since. I couldn't attend a RL group for all the tea in China - I was told of one based in Buckingham some years ago, but never looked into it; simply not my cup of tea. Thinking about it, the online group I tried may have been USA-based, I'm not sure. :think:

Dog breeds: no I've never looked after an Airedale or an Irish Wolfhound; I'd be happy to do so though, as long as they weren't too huge - we only have a tiny bungalow, so not practical to take Giant breeds really. But I'll happily look after any dog you care to put my way! I've had everything from a tiny Yorkie to a Ridgeback Cross.

Crafting: I've always done knitting and cross-stitch, and I've started making my own cards. It's hard to get to a card shop; and I can never find suitable Yule cards unless I go to Wyrdo's in Newport Pagnell, which are fine for "friends" but a tad expensive for the "casual acquaintances you need to send to in order to be polite" iyswim.

Anyways, time for me to belt up; dins is nearly cooked (veggie toad-in-the-hole) so I need to go and attend to that.

candygirl

There s a free fibro recipe book, on ereader iq today .Did the link before but it showed my amazon account :eek:

Purple_kitten

Thanks for the book heads up Candygirl, I've just downloaded a free copy.

candygirl

Purple_kitten wrote: »

Thanks for the book heads up Candygirl, I've just downloaded a free copy.

You're welcome hun x

pollyanna_26

Candy do you have title for that book?The only e books I have are ones I can download to the laptop .

Need to read back again :rotfl::rotfl::rotfl:I got distracted by a thread about linen tea towels and ended up searching wardrobes cupboards and bookcases for La Redoute clothes and French General Books . I need a mind that doesn't wander .
polly