This has been a big test of of character I’m sure for all of us. I’ve tried to find ways to stay active mentally and all other ways to beat depression, loneliness and self-worth!
What do you do on good days?
On bad days?
On good days, I try and do the things I love! I listen to music, sing along! I bring out my artwork or other crafting project. Go for a short walk. Treat myself to some pampering like a bath with essential oils.
On bad days, I get into, rather stay in my favourite jammies and curl up/binge watch my favourite shows.
What do you guys do?! Look forward to reading all your wonderful ideas.
Here is one of my art pieces. Hope you enjoy!
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Rheumagal
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That is a good post, for some bizarre reason, site won’t let me press ‘like’ on new posts lately, but I do 😀
Good days: watch the birds in garden and resident squirrel who nicks their food🐿 (gives me an enormous sense of well being: old song!), read in hammock in shade, swim, sit on beach with dog (hands free lead), mindfulness meditation.
Bad: truthfully: sit on my arse n feel sorry for myself watching property porn about all the houses I couldn’t possibly do up now! Take drugs (for pain) and sleep. Yours sounded better.
Love your art work, always used to be practical creative type & hoping hands get back to normal enough for this on new meds. X
On good days I go to the spa , it has a large outdoor heated area which is wonderful. Or meet a friend for coffee, or pop along to the tai chi class (I need to sit out for a bit even on a good day). Or I 'diddle' in the house, write letters or read, or take photos.
On a bad day I curl up in my jammies and watch TV.
A good question! I was always a strong woman who felt as if I could do anything. I played tennis and golf and I had lots of friends who were the same, but over the last 4 years I seem to have withdrawn from that life. My RA was never really properly controlled but I’m on a biologic now which seems to be working. I actually have a bit of energy.
There are more good days and I’m making the effort to contact old friends and do things with them. Getting into the garden to do much needed clearing etc. I’m actually dog sitting at the moment and doing all my sons ironing as he and his girlfriend are so busy working. Life’s tooo short for ironing pure cotton sheets .....
On bad days I have to say I hardly leave the house. I potter around drinking tea and binge watching Netflix Scandi dramas which I love. Cuddling the dog too of course, she loves those days.
You sound like you are describing me!!!! May I ask what a biological is and what exactly you take? I am desperately seeking something to give me some energy so I can feel like I’ve accomplished something other than just getting through meals!! Lately I have been taking a morning nap along with my afternoon nap for about 30 minutes. Even that doesn’t help! 😫
Humira the biologic worked really well for a few months but sadly stopped. I’m on another one now which is a weekly injection of Erelzi ( etanercept) and waiting for it to start working. So really no further forward, but no worse either I suppose.
The fatigue is almost worse than the pain I find. It’s hard to get motivated and everything is such an effort.
You don’t say what treatment you are on but I hope things get better for you and you can get back to at least a bit of your old life. I live in hope but I’m slowly accepting that perhaps I won’t be playing golf, walking etc any more and I might have to take up painting again! x
Did you paint that!?? Stunning...how creative are you!
I'm a walker (good days and Bad). I've got a border/aussie Shepherd... No choice! on good days I love it, on bad days I hate it.
Also a wild camper. I absolutely love wild camping and do this as much as I'm physically able. I haven't been able to do this much recently, if I'm not careful this fact depresses me. However, just planning my next trip into the wilds really cheers me up.
To keep myself relatively sane and not feeling totally useless I look after a disabled chap once a week voluntarily. Stops me from feeling too sorry for myself.
I like to go out from time to time for a coffee and a meal (with or without friends).
Oh yes...on a good day I ride my trike. Hilarious. I got a wolf whistle the other day...think he was taking the Pip...bastxrd!
I’m with you! Love camping in the wild, under the stars! I haven’t in years though. Same reasons. My poor body would suffer so 😕 day trips are a great alternative
I use adult colouring books on good and bad days. I garden on good days and get out on my scooter to go up the village. On bad days i just lounge on my recliner and more often than not end up crying,which is a lot this year.xxxx
I do that sometimes - the crying I mean and it makes me feel a bit better, physically and emotionally. I think it releases a lot of tension and in the end there’s a calm. Do you find that Sylvi?
Last year, this described how I felt and by reading the comments, we have all experienced at times the most difficult feelings that come with suffering from a relentless illness.
There have been times throughout the last 10 years of having this illness where I’ve been bedridden for months at a time and my life seemed hopeless. Some how we always pull through don’t we.
I definitely have benefited from groups like this where we can encourage each other and support one another.
It isn’t always a joyful battle or an easy one but we are not alone!
Love your art, you are really talented! Same as many comments here. Get out when I'm good and hunker down when I'm not. I do half a day volunteering which I feel helps me a lot with self worth. Appreciate the friends I have now that have stuck around, and make sure they know it.
What a great post! You should sell or at least display your artwork if it is all like the pic you posted!
My really bad days are mostly a thing of the past now - I still get the odd day or two when I just wish I wasn't here any more and spend a lot of time crying and feeling sorry for myself. But I still get on with the things I can do. I am a nutter for housework and nothing much stops me from doing that, although have much less energy for it these days! But mostly my meds have calmed the RA down to a point where although stiff in the mornings, I don't seem to get flares any more, so I can do most of the things I always used to do for pleasure, except play my guitar and banjo which I was just learning - so that has gone out the window. My wrists won't bend enough for that any more. I still do my photography, and I walk my dog for at least an hour most days, which gets me out even if I don't want to go - but I know I need to do this to help keep my muscles and bones strong. At 63, I have just been diagnosed with osteoporosis in my spine (as well as scoliosis), and osteopenia in my hip, so I know I have to be very careful now, walking in the hills and on rough ground. Don't want to have to call the air ambulance to rescue me if I slip and fracture something!
Thanks for the super post....will read everyone else's now!
Definitely my wonderful grandchildren, have 5, 3 boys and two girls, all different, personality wise. They are older now, so love taking them to lunch individually and having a good old natter. With a lovely summer and they are home for the holidays it certainly a boost for me. Meeting up with friends, WI meetings, also my garden, only small and with some help out there, has looked great. So pleased with some rain, as now soo bored with the watering.
Bad days, like Kerena property programs, also catchup, Lost Lost family (a good weep) Who Do You Think You Are, feet up and and a cappuccino. Love your artwork, do you exhibit, it's so good. X
Thank you Catty. It really is fun, To be fair, have loved every stage in their lives and feel lucky to have been involved with them since they were baby's. I am so proud they have grown up so grounded. Enjoy you weekend. X
You are so talented.I used to try all sorts of different art classes years ago when my hands were good...never reached that standard thou.I also started writing a book n left off from that .At moment just moved to new property so busy with that but like to go walking with friends when good.We all met up last night for fish and chips and played trivial pursuit.
Yes. On bad days I am totally out of commission. I realized too that I need something to help me from going stir crazy since I’m stuck at home. I can’t stop dreaming and living a few of them because of my illness. I hope you’ll get a chance to explore your art again. And be sure to share them with us!
Like SnooW my really bad days are few and far between now, and I can sort of anticipate when things are going downhill so I need to pace myself more. And I think I have also sort of come to terms with having a much smaller social life than I used to - but most of that is moving to the middle of nowhere rather than the disease! But with a dog we have to go out every day, and in a small village that means we have to speak to someone. So we don't feel completely isolated.
But yes, enjoying my own company was something I had to learn, as were more sedentary or smaller scale hobbies. I do a lot more in a virtual world since all my old friends are physically miles away, and things like book crossing pleases me as I can see how my books travel even if I don't do much.
And of course I spend half an hour or so a day on here...often in the mornings it's my transition period while my joints wake up, so between getting out of bed and actually doing anything. And then again if I need to sit for a bit in the afternoon.
I am always busy, writing, reading, business stuff, that’s what frustrated me as RA forced me to slow down, in reality probably a good thing. Btw do you sell your art?
On good days I try and do all the things that I can’t do on bad days - like clearing the garage (never-ending) and baking. My pain is relatively well-controlled atm but on bad days I just feel exhausted - and sometimes ill from the medications (esp if I take all I should) so I stay in bed late and read the papers online which can be really depressing atm with all that’s going on. Try and balance that with some lifestyle documentaries on tv.
Mind you I’m also lucky as my partner is normally around so there is someone to chat too - and to take the dog out etc if I’m not good.
My life has certainly become a lot smaller since RD raised its unlovely head. Walking the dog is not happening at the moment but crazy mad knitting and crochet are keeping the hands and brain active, a little light gardening, housework, visiting, and being visited by, family, Oooh and holidays to somewhere warm. Bad days are pretty similar really but slower and with more reading. Planning the next break makes me really happy. Off to Whitby in the new caravan next week and maybe down to Dorset before the weather gets nasty. Love, love, love your artwork.
Thank you. I find that little and often is key for me. I can feel everything loosening up at least for a while and producing something useful is very satisfying.
Great post on good days I try to go to my body conditioning classes or swim and get out and about, on bad days I just lounge about the house and watch television 📺
Love your art! I used to do botanical art classes, but had to stop as one day of drawing would lead to 2 days with hand in a 'sling'!
Good days - gardening, grandchildren, cooking, baking, walking, gallery visits, meeting friends, arranging future holidays or outings.
Bad days - avoiding all of the above, researching family history on line, ( if my hands work at all), and being grateful that I haven't got anything worse and am still able to enjoy all of the above sometimes. - unlike a friend who has Motor Neurone disease, and some
On good days i try to do the things that i that i cant do on bad days that then brings the bad days back cant win. Having lots of pain with the knees at the moment but off to Lanzarote next month so hoping for some good days and you art is lovely
I discovered (actually I was pointed to) a product called Salonpas.. It has Lidocaine in it, and it is wonderful. I bought the large patches for the bursitis in my hip and have truly slept free of pain for two nights running, and those are the first ones in literally months. I was taking pain pills to help it, but they didn't last long enough to sleep through the night. However, for general pain, of course, that won't work... They have a cream and roll on that works well for knees.. Hope you get some pain free time while you are off..
Good post! On good days well I just like to get out, whether it's out out or just in the garden. I do have more of them than bad days thankfully.
On the few bad days my dog Freya knows & just snuggles up with me be it in bed or on the recliner & either watch the gogglebox or fall asleep to it. 🐶😴
I didn't want to open another thread just to put my art
so doing a code to see if I can get it on here, don't know if it will work? it might show just a code? fingers crossed here goes,if you don't see any art, your all know the code didn't work :O))) if I am making sense? :O))))
Gardening... how lovely. We moved to an apartment so I have a few pots on my balcony... I miss it! And I had to give up my dog up side, I have simplified life. There’s no way I could keep up otherwise.
I have to try and stay busy somehow or I get really depressed.
Until last Sunday, I was on a walking 🚶♀️ marathon ie 20 klm in the morning and thirty through the day. Now I am unable to walk at all , I binge on Discovery, History and Research. I have a ten year old Havanese and a long hair Chihuahua. I love your artwork. I was running three businesses when I was diagnosed. Now I am on disability I volunteer for PVN which is so be autocratic nothing ever gets done. I avoid health care facilities as immune system very depressed lol but open to new ideas.
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on good days I love it, on bad days I hate it. 
up side, I have simplified life. There’s no way I could keep up otherwise. 
how do you read this help please !
How do you live & work etc. with neutropenia?
How do you manage it all?
How Many ISTS do you have? I'm up to 8!
