So I posted a week or so ago that my disease consumes my every thought and all my posts naturally are frantic when I’m in a mess with my disease so after what felt like a small break through of shoe insoles yesterday I wanted to do a positive post!
Just so I can get to know a bit about all you lovely people who are so amazing at supporting me and because as much as it may seem it sometimes, our disease or illness does not define us I want to know... what’s your little thing that makes you happy? I don’t mean family or friends as we know they are the main ones, the smaller things in life?! Mine may seem silly but it is...... making my bed look pretty. No other bugger sees it but I love it looking beautiful and inviting for me! (Mainly because I feel less stress and pain there! 😂) see picture!!! Let me know what yours is! 💕
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Hels1989
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Well mine kiddies are 33 and 31 with one dil who will be 31 end of the month. I only started colouring 3yrs ago when my ra/fibro and cfs really started kicking my butt. It has been a life saver since as it stops me getting bored with having to sit so much. I can get lost in it and not having to think about how ill i am.xxxxx
There was a report the other day saying how relaxing colouring was. Came out as good as mindfulness in the study they did. Also good for keeping depression away - what’s not to like! Must get my colouring books out again!
I have books upstairs for when i am in bed,books by the side of my chair and when i have the conservatory sorted out there will be a book out there as well.xx
Now that my hands are so much better than this time last year I'm back to my knitting, crochet and needlework. I may be slower than I used to be but it's good to be back. Hugs
Jan
ps with 12th grandchild currently in production those knitting needles have hardly gone cold for 10 years
I've recently returned to knitting and crochet and really enjoying it although do find that I have to do it in short stints or my wrists and hands swell.
Me too. Nowhere near a quick as before and short stints is the only option for me. As its become a bit of an obsession I'm very glad to find a fellow knitter.
I love Christmas as well so much so i go over board and once this weekend is over i will get hubby to get them out of the loft so i can start as it usually takes me two weeks to put up with help,this year it is going to take longer i think. When i have finished i will up load photos for you to see.xxxx
Mine too Paul, such a pretty pink it's brightened up my living room. I'd had it hidden on the bottom shelf & went to water it & it was so lovely it's taking pride of place on the top now.
That's great Sylvi-double the joy! At the same time I got the cactus I got a Pointsettia. Although it was red when I got it, it's not been red since...about three years.
I also have one that lived, from two years ago, previous years & last year they haven't survived. Unfortunately due to the way they're forced so they're available in such quantities for Christmas the likelihood of keeping the bracts red (the flower is actually the bit in the middle of the red) is difficult as it needs to be kept in the dark for certain months of the year. Keep feeding every fortnight until the bracts have finished. Let it stand in a cool sunny place though don't water it til the soil is completely dry & the stems shrivel. Around May time it needs to be trimmed down to approx 10cm taking care not to water until you see new shoots, don't overwater though, only when the soil is starting to dry out. Once they're about 2cm long start feeding. From Sept cover the whole plant so it's in complete darkness for at least 14 hours, so early evening until the next day til about the middle of November. From then on stop covering & treat as you would normally & by Christmas with a bit (lot!) of luck you should have red bracts. I managed it once but to be honest it was such a faff I've not bothered since & bought a replacement each year & allowed my existing one to just stay as a green-leafed plant!
What I've never quite understood is that in Spain poinsettias grow like a tree in people's in gardens & nobody does anything to encourage the red bracts, they just appear each year! I tried & failed when I planted mine in my garden each year, it never once worked.
Hi Paul. According to Gardener's Question time on radio 4 it's all down to light levels and length of day or the bracts won't turn red. It sounded quite a complex operation to get the plants to co-operate. Hope this helps
My dog snuggling up to me for our afternoon siesta. Also with having a cold at the mo every time I cough she comes to see me to make sure I'm alright. I currently have 4 of her toys at my feet, each having been brought to comfort me, well that's my take on it!
Indeed NMH! Just tidied the understairs storage cupboard this morning. Found a skipping rope! I am sure I could jump ... but not wind the rope! Would make my shoulder ouch. Then found a cat harness which I used when I got my last cat in 2009 to wander round the garden with so he didn't bolt off! (He did for 24 hours when he first went out alone. Then a black furry cat toy mouse which I put On top of the central heating boiler cubby and made my hubby jump a mile! 😂. Then I found my late Mum's last little handbag which had some personal items in so that was sad as I must have put it in there to not deal with it. Now it's been done. Tomorrow the dining room ... Well all week as it is a big job with my art things in the corner and a large dresser with drawers and cupboards. I keep having tea breaks and sit downs! Hope you are feeling alright this weekend. Sunny but very cold here. xx
Aw, I bet finding your Mum's bag brought back memories. I also have a carrier bag of some of my Mum-in-law's things under the stairs, bits that my Dad-in-law didn't want taking to the charity shop just in case he saw someone with them whilst out. As he's been gone a year now I must tackle it. It's there where I keep the Christmas decs so I'll do it when I get them out.
Good luck with the dining room, sounds like rather a large job. Plenty of sit downs needed.
It's a been beautifully clear day here but a chill wind. It's done some good though, it's dried the towels I washed this morning! x
Yes our towels have dried nicely in the cold but sunny breeze. We nipped out to the Hepworth Gallery in Wakefield this afternoon and then I'm making tea now. It is hard to come across those personal things.. Most of Mum's are I have are in a lovely old blue leather suitcase which was here suitcase and a big box of photos and paper memorabilia. Safe and secure in my built in wardrobe.
Dining room is something I've been putting off for ages but I want of have the entire house tidy and ship shape top to bottom by Christmas. x
Anything Christmas! Watching old films, a clean house. Pj days. Ohhhh any type of coffee or hot choc, infact just hot drinks! Both kids in bed on time (must be my fav thing) clean bedding, furry blankets, photography, the list goes on. Im easy pleased but i know what you mean by a nice cosy looking bed ❤️
Yeah it just hits you every now again doesn't it, it's been months since I've felt like this. I've just got everything crossed that the biological drugs have miracle powers on me !!
I’m sure it will Hun! Well I’ve just realised the prescription St. Helens hospital gave me which was for 6 weeks worth of hydroxychloroquine leaves me a week short as I only see the nurse a week after I run out!! They said I’d get my second prescription when I saw the nurse but they booked it a week too late!!! I just feel like we already have such a big battle and then they do silly things like this!!! Only a few weeks ago my doctor made a mistake and halved my dose of naproxen and as I didn’t know I kept taking the dose I should take, went for my repeat and they refused to give it to me as in theory I should still have some left. I went 4 days then without any whilst it was sorted and I broke down in tears on the phone to the pharmacy! Not because I couldn’t cope with them but just because they don’t get the severity of the situation for me! No this is so much worse! These tablets take 12 weeks to work as it is! If I don’t take any for a week that is gonna set me back!!!! Just infuriates me as they literally have our lives in their hands and they make silly mistakes 😢 sorry rant over xx
It's not a rant! I just think it's silly how we sometimes have to fight for things that are just a human right, help with pain shouldn't be so hard should it. I've been on steriods for two years and the docs messed up my prescription, so had three days without them I was so ill.
It’s so annoying because they drum into you how they take up to 12 weeks to work then leave me a week short 😂 and these are professional people !! I know people make mistakes they are only human but my goodness it’s not hard to look on a calendar. Oh that must have been awful Hun!! Well I have 2 steroid injections 5 weeks ago and the pain is coming back. Not the stiffness thankfully. I know I need to tell the hospital really so they could hopefully give me more but I kind of keep thinking how will I know the DMARDS are working if the steroids are keeping the pain and stiffness away? I just feel like I’ve no idea about what to do about anything most of the time. I guess it’s just part of the adaptation process 😕 thanks for letting me have a little whinge Hun. So glad the steroids help you. My rheumy hasn’t mentioned anything about oral steroids xx
Oh my gosh...don't get me started. I've been such a mess lately and incompetent docs and nurses just don't help or seem to care. Where is the empathy?? I'm going to start sulfasalazine now...my 4th dmard and if no luck moving on to biologics. I am so afraid of biologics. Been on Prednisone this whole time...the only thing that has kept me mobile and sane. Still suffering the side effects from the hydroxychloroquine even though I've stopped. It has a really long half life. I hope you do a lot better with this drug than me! It took about 2.5 weeks for me to realize this isn't gonna work. Most ppl dont have side effects though. The only reason I stopped MTX was bc of hair loss and that was about 2 months ago, yet the hairloss hasn't gotten any better. So now I'm thinking....should I have just stayed on MTX? I seemed to tolerate it well for 8 weeks. It just never ends...always feeling lost and confused.
I’m lucky Hun in that I get zero side affects from hydroxychloroquine and with Mtx just a bit of brain fog and slight nausea and it is very slight. But then I panic thinking does that mean they won’t work for me! The thoughts of someone with anxiety is definitely a pain 😂 I worried about getting side effects and now I’m worrying about not getting them haha. Hope sulfasalazine works for you Hun or if not biologics blow the disease outta the water for you 🙂 xx
Thanks! And please dont worry about your minimal side effects...that's such a blessing! I've read some nice experiences about both mtx and hydroxy...people who dont suffer the adverse side effects and they've been getting along nicely for years. I pray that will be your experience!
Isn't it funny? This thread was supposed to be a positive one and look how its taken a turn! Hahaha. What can I say? It's the way this disease works...cant stay upbeat for too long, always something there to turn things around.
Anything from the natural world makes me happy. Birds singing in the morning, dogs playing in the park, trees in the autumn, snow blanketing everything, spring flowers, sound of the sea... I could go on forever .. 😆
Hi Hels I love everything about Christmas 🎄 it’s my favourite time of the year. Some people would probably think that is over the top but do you know what I really don’t care. I do it the way I like to do it because it brings me lots of pleasure. The everyday things clean bed sheets and I love when all my home 🏠 is lovely and clean. People think I am mad but I love doing my housework when I am not in pain. 🤗🤗🤗🌹🌹🌹xxx
Christmas i too go overboard at Christmas. My house is like santas grotto by the i get it done. Now remembrance weekend is over the deccies and trees will come out and i will start to put them up ready to turn on on the first of December. I will post photos when i am done.xxx
I go into and kitchen and bake cakes, it destresses me, altho on trying to make bread last week, my wrists were too sore so had to use the kitchen aid, but I I'll find a way round it. My granddaughter usually gives me a few months to prepare things for her birthday cake. She loved her rapunzel cake I made. That makes me happy seeing her wee face X
A person with the same love of baking! I love the smell of gingerbread hot from the oven, the way the scent of icing hangs in the air long after you spread it, and the way my daughter tries to make every cookie perfectly decorated!
Drawing, painting, printmaking. Satisfying my creative streak makes me happy. Music too. Many types and bands but my faves are The Cult, Queen and Whitesnake. Yes I'm a rocker! Also being out in the country .. Nature and (light) gardening. 🌳🌸🌻🎸🎨
If I had known I would have gone there with you !! Shame.... but have an amazing night. Gonna be brilliant ! Ps people have been selling meet and greet tickets. They are fake. Brian May put out a statement tonight x
I saw Brian's IG post about a bogus M&G in Europe. How awful for someone to do that and spoil it for fans. Upset Brian too 😖 Next time they are here we will go to a show together! Will be fun. I think Leeds may be 6 December but haven't checked the diary yet! When is Newcastle? Hope you have a great night. Can't wait to see Adam aloft Frank the robot! 😁x
I feel happy lying in sun and feeling my pain sort of disappear (relaxed I guess) or when I
can being in my garden pottering. Another lovely thing is getting into a freshly laundered
bed....but changing it causes so much pain (wrists & hands are y bugbear).
I am hoping that in 4/5 weeks I can start Enbrel as NOTHING else works. I refused a few
months ago but my very kind and patient rheumy told be kindle that I had little option. So scared as I maybe I have to try. At the most, he says! is perhaps chest infections which I
don't normally get, at most once in a blue moon. If I do, watch it, he says as can be a bit
troublesome. Don't be scared, how can you not be.
It has finally sunk in that there is no cure and I have to make the best of it. Some days
are hard as you well know, but having you guys out there helps...it really does.
Chin up Hels, keep posting...it keeps you sane (I think)
Go for Enberel and if it works changing your bed linen will be so much easier for you. Been on it for 8 years ( apart from Benepali break ) and never had a chest infection in all that time. X
Hels, I'm so happy you have some break through with your new orthotics! I know I will have too when the hospital get them and the shoes right. (Only been waiting since June 2014. 😩😣😖)
It is a very frustrating time indeed Hels and when you are controlling the arthritis as opposed to it controlling you then you will feel much better. It won't be your every thought or panic. I assure you. You'll start planning outings and things to do and feel more active. People told me this when I was in the place you're in at the moment, and doubted them a lot as it hurt to even breathe when I was at my lowest, but you DO make a recovery and I think you're starting to do so now!
Agree it is lovely to have your bed all comfy. Yours looks very pretty indeed. I've just bought new anti allergenic duvet and pillows and protectors and a new set of curtains and bedding. I really need some voiles as although we are not close to the house opposite (50 yards) they can still see us at the window I am sure as we can see them at their window! ( He's an enormous guy who parades topless in his bedroom! 😝!!)
I'm still doing my massive house tidy and clear out and not as much on here but still having a look every couple of days. Don't want to lose touch. Hugs, honey. xxxx
That’s my aim lovely because after xmas I want to be booking my holiday. You are definitely one of my biggest supporters and every message from you makes me feel more hopeful 😘 xx
I know you will get there and I know how scary it is at first. You think you'll never go on holiday or do anything much again, but you will. 😀 I know you are determined to get on your family dream holiday once your joints are more mobile and stronger. You are being patient and sensible about not trying to rush off and do that before you're ready. There's Christmas to look forward to first and hopefully distractions with getting ready for that to take your mind away from the RA. A few months will make all the difference. xx
You just be psychic! I'm just looking again. 😁 Thank you .. I will do that as we are only 3 miles from a huge IKEA! I want their tiered storage trolley for my smaller art equipment. I've just been looking at Dunelm. Never bought from them before but they've a huge range of pretty ones. I don't want to see the topless man opposite! 🙀
Haha. You're lucky having a store so close. We've the option of 2 but as they're both equally as far from one another it's a full day out. Plus it's such a trek with the store layout I tend to order most things online except my plates & glasses both of which I need more of plus bowls to add to the set. Must make the effort though as we have an IKEA family card & on offer at the mo there's a table I fancy for the kitchen.
Did you ever watch Friends? You saying about the man opposite reminded me of ugly naked guy opposite Monica's apartment! x
I love this time of year when the nights are drawing in and Christmas on its way and putting the tree up and the house all cosy only shop online now but thats ok.When i first had to shop online i felt very down about it but i love it now looking for the grand kids toys and seeing there wee faces when they arrive on Christmas day
Shower/ bath and freshly made up bed, with a good book!
What a lovely post. It sued us good to remember that regardless of how bad this wretched disease can at times make us feel, there’s little miracles hiding around us, ready to pop up whenever we are well enough to see them.
Today I was reminded how much I love to paint, we took the Girl Scouts to a painting place. We all did a small canvas and a ceramic ornament that is currently being fired! My troop also got to experience my perfectionist side, I was the last to finish as I couldn't get the shadowing right on Santa's beard!
Baking of any type calms me, and I'm pretty good at it! Decorating cakes is harder than before, I am testing different methods of holding the bag!
Another thing I love and feel I can indulge in with having arthritis is finding an old film on youtube and settling down for the afternoon. I am enjoying old James Mason films at the moment.
What a great idea Hels, all seems so negative sometimes. Mine: walking up the less steep path to Kingley Vale kicking up autumn leaves, watching/feeding birds (i loved gardening but am going to find some adapted tools, ideas anyone), beach with the dog wave watch ing, watching/reading anything by Monty Don, the legend,
I'm with you having a bad day....this morning awoke in such pain in my wrist and hands, could not clean mt teeth it was so painful. Managed a cup of tea and toast, co-codermol (fizzy ones best) and lay on bed with hot water bottle. By lunch time I was less stiff but too
tired to do much so baked a cake, watched TV and relaxed. Hope tomorrow will be better.
Very cold down here in Bucks (that does not help) Like you also wanting to book holiday for
Feb, but until I see how Enbrel goes will hold back. Hope you feel better soon.
My messages keep getting zapped?! Then won't post for ages. Must be my phone. Argh. I can only just go round IKEA now without having s panic attack that I can't get out fast enough if my legs feel bad. I used to have to sit on their chairs and once in a bed. It's a long long walk. Even to the cafe.
I had similar with phone based ones?? Weird and made me feel bad if people had replied but seems to have resolved itself now: or it has if you get this 😄 ooh panic attacks; only ever got these b4 with first born n lack of sleep but now ... I posted one on Matt Lewis Overcoming Anxiety: the openings a bit boring but i found some of the little exercises in second half really
helpful, in fact was just rereading a couple of bookmarked ones when i read yours. Lol
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I'll have to look into it and see if there's anything that can be done to induce some colour!
Can someone let me know what remission is?
RA and Relationships. Are you affected?
Things that have helped me 😎
Medication to get you moving 😄
