Physically I overdid it yesterday and paid for it big time, left me feeling frustrated and resentful.
I know i am only new to this disease but I cannot go on thinking the way I do, I have to change my mindset; I have to be really careful not to slip into feeling sorry for myself for too long, over the last 5 months my children have seen me cry way too many times and I need a coping mechanism.
What do you guys do to cope and take your mind to a better place ?
I keep telling myself its just a bad day not a bad life, I'm hopeful my DMARD will kick in soon and help.
Thinking of trying meditation?
Thanks x
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Marionfromhappydays
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What an excellent idea, it's helped many people over the years so go for it. You Tube has some good videos with guided meditation for those who need to know how, Yoga Nidra is a good one, just type it in and it will come up. All the best if you decide to do it. x
Well for a start on a bad day when i have to rest i do my adult colouring book. I don't have to think i just colour. It is no big thing your children see you cry as then they know how bad mommy feels. xxx
Well nip out and get yourself a book and something to use, i use gel glitter pens, poundland do them as do the Works. If you can't get out go on Amazon you will get all the colouring books you like and pens pencil etc. and if you want you vcan get them next day delivery so you wouldn't have to wait long.xxx
If youur children are young enough they can sit and colour with you. It will be something you can all do together so you won't miss out on them and they you darling. You could all look on amazon and each pick themselves a book and something to colour it in with then your set.xxxx
Personally, I think you’re allowed to feel sorry for yourself sometimes, especially in the early stages when everything is so up and down. Sometimes I find I retreat somewhere away from the kids for an hour or so to get my head sorted, but like you say I try not to stay away for too long or it’s more difficult to shake myself out if it. So then might try to do something with them which can allow me to rest at the same time, like maybe snuggling up and watching a movie together. It does me good as I feel I am still engaged with them and takes my mind off things at the same time.
I really feel for you. I had a really hard time accepting my diagnosis and it manifested as anger in my case. I had some counselling and began to accept that I had to get used to having a 'new normal' and accepting there are certain things I just can't do any more - but that acceptance does take time. I had meditated for years before diagnosis and still do and also do Reiki - I don't know where I'd be without them! I think when your medication kicks in, that too helps, as you feel more able to cope and in control (important for a control freak like me!!). But above all BE KIND to yourself and give yourself (and your medication) time - I'm 2 years since diagnosis and much better at acceptance - though I still have my 'moments' 🤣😂. Honestly, it does get better with time and you'll soon get to know what you can and can't do at any one time, so that you don't overdo it. Hope you feel better soon xx
I feel like I'm a war of attrition at the moment. I am going to be proactive and look up some meditation apps x
Such a personal thing and boy are we different. Meditation wasn’t for me couldn’t wait for it to be over 😂. 4 years plus of RA still can’t get it right my coping way changes all the time. Got a dog she did and still makes a difference but at the moment can’t walk her hence I get very down ( the only physical pass time I have left) exercise helps my mood. So I’m left with a really good moan 😁 and this is where I moan rather than drag my family into it(sorry everyone) I get it off my chest responses mostly help as people understand and a lot of humour on here so I have a chuckle and it gets me through. This works for me.x
I think its good to have somewhere to get things out, its such a mental as well as physical disease.
Ooh what kind of dog have you got ? My mum is thinking about getting one, we always had heniz 57 and then had a few German Shepherds and they are such beautiful dogs
Oh I had a GS when I was younger called bouncer 😁happy days.
I have a greyhound now and I love her real gentle souls and they just look at you with such love. She’s great on the lead doesn’t pull and just goes at what ever pace I dictate.
My hubby and son weren’t keen on a greyhound but they both agree they are fab breed infact my son wants to have another 😂😂
Losing myself in a book/magazine or watching feelgood TV helps me. The other thing I've found really good for switching off is Tai Chi for Arthritis which has the added benefit of being really good for us physically. It was recommended by my rheumy clinic and in various booklets from NRAS among others and I started it last year soon after diagnosis. I chose to have one to one lessons as there were no classes running at the time but found the DVD really useful and I'm sure that you could just learn it from that.
Or try Qi Gong which is similar to Tai Chi but includes more mindfulness. NRAS offered some free taster sessions during RA Awareness Week and I thought they were really good.
It's very gentle and that particular programme is designed especially for people with RA. It's also incredibly calming and needs concentration which means that you really switch off while doing it 😊
It's also surprisingly effective exercise - builds up muscles gently as well as improving balance 😉
It does take time to adjust and its hard and crying is good to release the frustration too. However once I have had a little cry (not something I did pre RA) I tend to go and bake something. So I have now created my RA cookbook as I had to adapt for example no kneading after doing this 4months ago I was in agony for days. BUT being able to cook and then see happy faces works for me. I also do colouring as bad at drawing but have a wonderful book which I find helps as well.
Hi Marion, Already been said below but art is an excellent way of taking your mind away from the awful things. I’m an artist so I don’t actually do it as therapy as such. Even though I create my own imagery all the time, I still love colouring books. Always have since I was able to hold a coloured pencil aged 2 or 3! It’s a fab way of practising mindfulness. Even the swoosh of the pencil crayons sounds soothing on the paper! Sometimes I’m precise and picky and sometimes I just crash out a page with bold sweeps of pencil colour! Whatever takes your fancy or you can collage pieces of paper and items on the pages too and make it even more your own art! I love Joanna Basford’s colouring books and also Millie Marotta’s. There’s also a series by s owkan called Zoe who does Secret Paris/Japan/NY. Those are funky and fun! JB’s are quite intricate and smaller imagery. (In fact I’m in the process of making my own colouring book but had to stop as couldn’t access the print studio to reproduce imagery.)
This summer I’ve done all sorts of outdoor art .. solar photography using my own plants and lockers as the subject, decoupaged (collage) and painted and decorated my own plant pots, painted garden rattan/ornaments, planted seeds (and harvested them too recently!) That’s a thought maybe for you for next spring? ... to get some large pots or raised bed/trough on legs and grow something! I’ve grown all sorts of crops and flowers from seeds this year. There’s something lovely about growing your own! Others here love doing this too!
I do many art and some craft pursuits but to also distract myself I read a lot. Mostly art, science and philosophy but lately got into some fiction and also I like biographies and autobiographies. Also I go to my fave DVD box sets and especially the comedy ones as we do need a laugh. My hubby recently found a lovely older electric Singer which had been his Mum’s in our storage recently and I fancy revisiting some dressmaking. Some lovely in one debris stores with great bargains. Singer seems to work perfectly and we’ve checked the wiring and plug. So many things I want to do so it’s pacing yourself that’s important. Not wear yourself out.
I’d love to be more meditative. I do practice deep breathing but it’s not a spiritual thing for me .. just for my sinuses and catahhr. I also love music but have it admit it isn’t mostly relaxing music to listen to .. more the sort to make you want to leap up and dance. Ah if only! I also love listening to podcasts and love Ru Paul and Michelle Visage’s podcast and also Fearne Cotton’s Happy Place interviews. They are so good. I love going out in the car and taking my watercolour pencils and my portable palette of watercolour pans (solid colour.) and parking up somewhere remote (hubby comes with me!) and drawing the landscape. You can sketch and draw even if not an experienced artist. Most people have something creative in them whether craft, photography, crochet, colouring, baking, flower arranging. Hope you find something you love that distracts you from the RA and gives you much pleasure! I’m going to look up the suggestions for meditation too, thank you! x
Thank you for your reply, before diagnosis I worked for myself hand screenprinting my own designs on tshirts. I really enjoyed photoshop but my hands just won't comply at the moment so I've just lost my mojo
I'd love to grow something, maybe I should get reading up for next year, my knowledge is practically zero ! Although I find Monty Don very relaxing to listen to so might have to watch some.of his shows !
Love RuPaul, ive heard such good things about drag race but not actually watched one , maybe now is the time to check some.out x
It is so hard in the beginning to adapt to pacing yourself, but it will come and you will become aware of the sublte signs that your body is begining to tire.
I started doing jigsaws during lockdown which I've now got into, but they can be surprisingly tiring too.
I also listen to audiobooks, rather than physically read when tired, and use my fitbit for a 5 min relaxation session most days. It is quite amazing what a wee 5 minute session can do to just quieten your body down.
You will adjust and hopefully the meds will help you over time.
Hi Marion, I can relate as I overdo it then get cross with myself.
I am finding that when I’m having a down day - I try and do my resting actually in my bedroom, as psychologically my brain isn’t expecting me to be doing chores etc if I’m in there. If I try and rest in the living room I get sucked into housework etc etc.
I try and use my resting time constructively doing little tasks like ordering library books, doing books research, and catching up with my social texts/emails/letters. I am lucky as my girls are grown up but I do recall the tactics I used with them if I was ever ill. We had duvet days where I’d read to them (or they’d read to me!) and generally veg out. Even had duvet picnics (if you can cope with that lolz!).
I have also actually started experimenting by trying to do some simple sewing/knitting that I do downstairs: I realise I need to keep my head and hands busy even when I’m in ‘resting mode’. I use very simple projects as my hands aren’t up to too much, but I am finding it really hells. These projects would be suitable for kids - I know this, as the book I’m using was my kids craft book from when I was a little girl! 😂
I feel a bit more content on my down days. I just need to get on top of the guilt I feel if I have to say no to things that hubby may suggest etc. Work in progress. But I’m learning.
Rome wasn’t built in a day and all that.
I don’t know what age your children are but I do recommend you get some age appropriate books that could help you tell them how you are feeling and why you are up and down and sad etc.
I’ll try and look for you if you let me know their ages - I’m a librarian so I’d enjoy looking for you 👍
Thank you so much for your reply, i need to get into a good book !
You have a very proactive list of things there, I need to pinch some.of them x
My daughters are 15 and 10, my 10 year old worries alot and takes in everything. She's very caring but I feel bad when she sees me crying (I'm not constantly crying honestly 😁) as I know she will worry.
Is being a librarian as awesome as I think it is ? X
An instant books I thought about for your 10 year old was ‘Silly Billy’ by Anthony Brown. Although it looks like a picture book for youngsters, it’s very deep (as a lot Of his books are). Worry Dolls may be something you could try together. Also the Jacqueline Wilson book called The Worry Website. (I haven’t read but my daughters rated it).
For your older girl a book that I thought was very thought provoking was Alice Kuipers “Life on the Refrigerator Door”. Not totally relevant with the type of health issues it explores, but it’s the communication lessons.
It all depends on how your daughters like learning as well - using the spoon method that someone told me about in this site is a great visual aid. That helps them see what you are like each day energy wise.
I’m blessed with grown up daughters who I can just be brutally honest with. I have many a time said “god I’m dead today” when they have asked and we can then just chat about something nice. We have nodded at RA and acknowledged it but then happily ignored it . My daughters would worry more if I withheld info I think.
I feel lucky to have girls who seem to be tuned into me, and I find them a great source of support 👍
Whenever I feel depressed or stress I spent my time in my garden because gardening is my hobby and passion too. I feel relaxed when I'm in my garden, cutting the extra grass of my lawn with my Greenworks Corded Electric Lawn Mower (machinesrating.com/best-wal... , take care of my plants watering them and check that which plant or flowers needs more attention because you have to care them with love. Whenever I'm in the garden automatically my mood becomes happy because of nature love and spend time with nature is the best meditation and therapy for depression and stress.
I tend to love to get lost in a book when I am feeling a little low. For me I need to try and focus my mind on something. So personal for us all isn’t it? My virtual choir practice and rehearsals always bring a smile to my face too on a difficult day. x
When I'm feeling really meh and not capable of doing much at all, I find curling up on the sofa with my crochet can be a huge help. It feels like an indulgence as pre-RA I would never have just sat and crocheted during the day, yet I'm still being "productive" and creating something. I think it also helps that it's somewhat repetitive so becomes almost like a meditation of sorts and I just get lost in the colours, the process and the creative act itself...
There are so many lovely ideas here, I think I'm going to steal a few of them myself... and I really hope you find whatever works for you... x
You've already had so many wonderful ideas I can't add much. My dog always listens and it's a great comfort to snuggle together. In better times walking her soothes the mind. If your hands allow knitting or crocheting small items show quick results. I've just got free patterns from Ravelry for knitted jigsaw pieces which can be put together to make,ooh, anything. Cushion covers, baby blankets etc. There are charities who need baby clothes for those in need. I find that whatever I do to free my mind from the 'worry cycle' will help.
There are some wonderful ideas on this thread. It’s all too easy to fall into a pit and forget the things that can help you. I have colouring books and pens but had completely forgotten about them until Sylvi mentioned them.
Your children sound lovely and caring and are old enough to understand if you don’t feel up to much some days. They might also have some ideas of things you can do together that are relaxing.
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What would you like Santa to bring you??🎅🎄🎁
Wish i didnt' feel so tired why do people not undertand I can't do what I always want to?
What do you do in bed? 
When will I feel a tiny bit better 
What a waste of the little energy I do have!!!!
