RA Life Hacks

Good afternoon HU people, I was just wondering what your RA life hacks are as I'm considering putting something together. I know many of the hacks will be unique to 'you', but some examples I have heard so far are; hot water bottle, make sure you have ready prepared meals in the fridge or freezer, plan ahead, electric toothbrushes, my DAS App. I would love to hear yours, whether they are sensible, practical, weird or crazy, just post them here, I'd love to read them. Thanks, Sally.

[Moomin8]

Hi- sounds fun!

....I wear gloves when I drive as it helps grip the wheel: less strain on my hands, wrists and shoulders 🙂

[Hidden in reply to Moomin8]

Thanks Moomin8, that's a great hack!

[Hidden]

Can I offer a PsA hack? Same difference, I guess. Mine would be making plans and then trying not get hacked off if PsA gets in the way of said plans. It's more an aim than a hack. I've never heard this word 'hack' before.

[Hidden in reply to Hidden]

Thanks Postle2!

[Moomin8]

I keep calendar reminders on my phone to remind me when/what meds to take ☺

[sylvi]

The works store are selling hot water bottles that slip round your neck and they are only £5 and if you out and about put this round your neck and your neck will be warm and the added advantage is there are always places where they will fill it with hot water for you.xxx

[Hidden]

-Medication apps for smart phones. It can prompt you when you need a new repeat prescription.

-My personal favourite; chopped, frozen veg. They are tastier than other veg and actually not more expensive, despite what I thought.

-I changed my car to an automatic which has meant I can actually drive not. Not cheap but totally worth it.

[Amy_Lee]

(1) Keep a plastic chair in the bathroom

I Kept a plastic chair in the bathroom so that I could sit down during shower. I could not lift up my hands then, so I sat down and bent over when I washed my hair and face. I also could lift up my legs and washed my foot well when I sat down on the plastic chair.

(2) To work on my knee on the bed

Since I could not sit on the floor and I could not squat, but I wanted very much to get back to normal so I tried to exercise and bend my knees on the bed. In that way I could easily put my foot down to get out of the bed when I finished instead of fear of not able to get up from floor.

Tried very hard to bend my knees slowly and consistently, finally I could/can sit on my calves naturally.

[aliljeff in reply to Amy_Lee]

need to put my occupational therapist hat on here, not my RA one - I highly recommend purchasing a proper shower stool instead of using a plastic chair. These don't tend to go well in bathrooms as the structural integrity deteriorates rapidly in the heat/humidity and the legs tend to splay and collapse.

[Amy_Lee in reply to aliljeff]

Oh!! Aliljeff, in Malaysia, the weather is so hot hence I do not use heater during shower, therefore I did not have such a problem. You may be right over there in USA or Europe where heater is commonly used during shower. Please do get a good one then. I was talking about my own experience and what I did during my recovery process.

[aliljeff in reply to Amy_Lee]

I'm Australian - no heater but the plastic chairs still do have a tendency to collapse given the humidity that builds up in bathrooms

[Amy_Lee in reply to aliljeff]

May be you need to get a good quality plastic chair then. I had no issue with mine here. On another note, I could not use stool because I could not sit down on the floor or low. I could not get back up from the floor too therefore, I had to use a chair instead of stool.

With the high of the chair, I could bend down to wash my hair and face. I could not lift my hands those day. It was so hard to get things done those days.

[aliljeff in reply to Amy_Lee]

As a qualifier professional, I could never recommend that to one of my patients. Shower chairs are also available. Most have adjustable legs.

[Amy_Lee in reply to aliljeff]

Really? I did not know that. At that time I just could not raise my hand hence I wanted to find a way to get things done. Therefore my daughter took me to the shop to just get a quite solid plastic chair. I sat on it and moved a bit to ensure it was solid enough for me. It did the job well and I just keep it aside now.

[Nitrobunny]

I sleep in athletic compression wear if I feel I am about to flare or if I am flaring and my skin will tolerate it. I also have joint specific pieces, ankle, knee, full arm, elbow, glove, fingerless glove and wrist that I can wear alone or over a compression shirt or leggings to target a specific joint that I'm having a problem with. I definitely notice a difference when I do wear the compression leggings to bed. I generally feel better than I do without it and while I can't stop the pain and swelling entirely, it seems to reduce it. I will say there are times that a flare is so bad I can't stand anything on my skin and nothing works but if I am able to get out in front of the flare and try to reduce the swelling, it helps me.

I also keep leg warmers on hand. I wear the extra long dancers type that extend past the knee halfway up the thigh. They are very soft and warm at the same time. My joints and muscles are happiest when I keep them warm especially during the winter months. I keep an oversized fleece shirt around for the same reason. It's easy to throw on over whatever I'm wearing. I avoid getting chilled at all costs. I run fevers for no reason and break them just as quickly so it's easy for me to feel suddenly chilled

I think many of us use gripping aids to open jars and keep them on hand in the kitchen. I also keep them next to my sink to open my husband's travel cups and I like the thin textured ones to help hold onto a wet slippery dish as I move or dry them.

Lastly, I find having a pet benefits me in so many ways. Aside from the love and companionship, having to feed, groom and care for my Saint Bernard, even on my worst days is a very good thing mentally. He's a reason to get up, get dressed and go outside even when I don't want to. They're a great way to fight the depression that can easily sneak up a person with chronic pain and illness. Pets aren't everyone's cup of tea but I can't imagine my life without one.

[Nickijk73 in reply to Nitrobunny]

Hi nitrobunny

I have 3 cats which I absolutely adore,but apart from getting up to feed and empty their boxes each morning,I literally felt like I had no reason to stay up or even go out - it can be weeks before I venture out of the house at times. I feed the birds in the garden twice a day,but I can still do that in my jamas,so it's taken months of thinking long and hard,but I've finally decided to get myself a dog,for the exact reasons you mentioned above - this way,no matter how rough I feel,I have got a reason to get dressed and out of the house at least twice a day,therefore giving me the thrill back of being able to feel alive when I'm all wrapped up and the bracing wind is blowing in my face(the joy of living in the sticks). I've grown up with big dogs all my life,but the last time I took my parents 38kg lab out,she pulled when I wasn't ready and I ended up on the floor 😳 It's taken me a long time to pick the right breed to suit my needs,but I've finally opted for a Maltese - I still can't get my head around the fact my cats will be bigger than my dog,but at least this way,if my symptoms do get so bad again,she'll be happy just to run around in the enclosed garden with the cats. I've still got another month or so before I pick her up,but just the thought of going back out into 'normal' life,and talking with other dog walkers has given me a zest for life that I haven't had in a very long time. For me,my pets are everything,and no matter how bad I get,I've never let them down,so this is definitely an incentive that is going to work for me,without the fear of being pulled over, off guard again 😊

Nicki x

[1goldie in reply to Nickijk73]

Hi Njk73, delighted to hear about your new arrival! We got a non shed Cavapoo in May as a puppy. I was diagnosed with UCTD in October having only got chronic pain and stiffness in July. It has been very demanding training a puppy, but your post made me realize she kept me going and watching her grow bigger on a weekly basis was amazing! She is now 8 months and causing horrendous problems between my new husband and I!! I was away for 5 days and he had put her out the back to mop up after"accident" and ended up in an altercation with neighbour about dog yelping out in rain, that brought the Rspca knocking on the door a week after I got back! Anyway, I digress, and just want to wish you hours of love and happiness with the new Maltese you will get. I think you know my answer to the question, man or dog??!!! Four legged friends, who would be without them!!

[Fennella02 in reply to Nickijk73]

I totally agree about the dog and will haul myself out with him however bad I feel. Chickens have been the best thing for me - they need to be let out at daybreak which has ended prolonged lie ins and consequently reduced my morning stiffness and improved my feeling of wellbeing x

[Nickijk73 in reply to Fennella02]

See,men are normally the bane of my life,(I'm not single and bitter as most men will prob think😝) but animals,as you say,they truly are the reason for living,as not only do they love,and like, you no matter how grouchy you get when in pain,but are totally dependant on you too - so there is no excuse for lying around when you could be out and about. I used to be completely Independant before becoming ill about 3 years ago(at the ripe old age of 40) - it has taken a hell of a lot to let other people help and for me to get my head around being dependant on them for pretty much everything when I was at my worse. My condition was finally brought under some level of control,and after 3 years,I can finally begin to see the light at the end of the tunnel now - if it was only at the beginning of this year I wouldn't have been able to think about a dog as I was still going to bed dressed as an ice hockey player with the amount of supports I used to wear,but thankfully I've passed that stage now - I still have bad days,but since being on enbrel,even my bad days are bearable now - so much so that I'm actually looking forward to getting the hats,scarves and gloves out,along with the thermal boots just so I can get out and feel alive again 😊😊 I know the puppy will be hard work,they always are,regardless of size,but the few accidents,or chewed shoes are always more than worth it!!

[Nitrobunny in reply to Nickijk73]

How wonderful Nicki! I'm thrilled to hear you will soon be welcoming a new furry friend into your home. I've always been around big dogs too but if I were to select a smaller dog a Maltese would definitely make the cut. I love their personalities. A perfect companion to bring some sunshine into your life every day.

My St. Bernard is 10 years old now and has a few health problems of his own, but in his lifetime he has stayed in bed with me for days, seen me through 14 rounds of chemo and going in and out of remission 4 times over 19 years in addition to all of the flares and complications from the autoimmune issues I have. He knows when I'm flaring and he knows when I'm doing well. I can't imagine a life without him although being a giant sized breed, I'm fortunate to have had him by side as long as I have. I'm also fortunate to have a vet that makes house calls and provides him with amazing care. Every day I have Wolfgang in my life is a gift.

Please update us when your new addition comes home and take lots of photos 😊

All the best -

[Nickijk73 in reply to Nitrobunny]

Hi nitrobunny,clareb67 and 1goldie - if someone could explain to me how to post a pic on my phone,then I'll put one up of Minnie(that's my new additions name by the way - I've been trying for ages now and just cant figure it out 😩

It's prob one of the easiest tasks,but today my brain just can't cope(the joy of 'fogs' and medication,eh?!

Nicki x

[Nickijk73 in reply to Nitrobunny]

Hi all

I still can't figure out how to post a picture on here,no matter how much help I've had from people trying to explain for me,but Minnie has now been at home with us since last Wednesday - for her size I still can't believe what a bundle of energy she is,and I'm literally counting down the days until she's had her second jabs and we can venture out,but all in,it's definitely the right decision for me,and I'm so glad I had support around me even when other people were telling me I shouldn't (she's never going to be more than 6lb in weight,or taller than 8-10inches at the shoulders). Even the cats haven't had a hiss or raised hair towards her either - which means she was obviously meant to join this madhouse 😝 As soon as I can figure it out, I'll post so many pics you'll be sick of the sight of her 😜

Here's to wishing everyone a fantastic Christmas and new year(pain free would be fab too) wether you have two legs or 4!!

Merry Christmas

Nicki & Minnie xx

[Nitrobunny in reply to Nickijk73]

I am so happy to hear that you are enjoying her and I am sure she adores you too. The only way I know to add a photo with a phone is the option it gives you to add a photo when you make a new post. There's a button for it. There is nothing quite like a puppy romping through your home and your heart. They are so fun and so much work initially! It's been ten years since Wolfgang was a pup and I still remember every detail. Such a stubborn little guy he was. Can't wait to see photos of Minnie!

All the best and Merry Christmas!

xx

S

[Nickijk73 in reply to Nitrobunny]

Ok,so I've managed to dig out my ancient laptop(who uses laptops instead of phones or tablets nowadays?🤔) I've managed to upload a pic as my profile,but I can't manage to get any other photos up - was just uploading latest pics from phone when my mischievous mog decided to tread on the power button and switched it off part way through 😩!!

At this time of night I've given up trying to think now,so I'm afraid the only pics you've got access to are the bits of pics I had from when she was still at the breeders,and then the one of her asleep in my slipper a day or two after I collected her - there are plenty for me to show,I just can't get my brain around it tonight!!

Maybe next time😝

Nicki x

[Nitrobunny in reply to Nickijk73]

Oh my goodness she is darling!!!!!!

[Nitrobunny]

Oh, on the men vs. dog - I've been known to tell my husband of five years (on New Year's Eve) that he can easily be replaced with two dogs and a cat. A dog isn't going to ask to borrow my Corvette or leave socks on the floor. 😊

[Hidden]

Thanks for all your comments everyone, this really helps. If you have any more 'hacks', or ideas that make your life a little easier, then please keep them coming! Thanks, Sally.

[Nitrobunny in reply to Hidden]

I don't know how much of a hack this is but one of my new favorite things is an electrically warmed wrap. It's like an electric blanket but smaller that wraps around your shoulders, snaps in the front if you like and some have pockets you can warm your hands in. The one I have is incredibly soft and cuddly and has five different heat settings so you can be very precise about how warm it is. I spent most of the last weekend wrapped up in it because I was feeling so badly. It's been very helpful. I bought one for my mother the very next day because I was so impressed with it and she really love it too.

[Nickijk73 in reply to Nitrobunny]

Ooh - sounds fab,where can I get one please? 🙏🏻X

[Nitrobunny in reply to Nickijk73]

Hi! I bought mine from Amazon - its been amazing

Serta Cuddler Electric Heated Wrap with Pockets, Sapphire amazon.com/dp/B013EHJ1N2/re...

[Nickijk73 in reply to Nitrobunny]

Noooo... that link says it doesn't ship to the uk?! That's it - my mission for tomorrow(or probably tonight if the insomnia carries on) is to scour the web for one.... failing that,my friends brother lives in NY,and I could always ask him to bring one home next time he's back on business?😜

Thanks for the info.... it's like Christmas all over again with the thought of that,and the best bit is that the cats and dog can curl up with me in it😊😊😊 x

[Nitrobunny in reply to Nickijk73]

You're welcome! Im happy to help and I'm more than happy to work with you to send one to you if you cannot easily procure one - send me a DM if you have any difficulty.

It was definitely like Christmas when I got mine too! I've really made use of mine and it helps a great deal.

[Nickijk73 in reply to Nitrobunny]

That's great - thankfully my friends brother comes back home pretty much every other week for business etc,so it shouldn't be a problem,but thanks so much for your kind offer xx

[Hidden]

That sounds amazing Nitrobunny, where did you get it from?

[Nitrobunny in reply to Hidden]

I'm so sorry for not getting back with you soon - here is the link where I got mine.

Serta Cuddler Electric Heated Wrap with Pockets, Sapphire amazon.com/dp/B013EHJ1N2/re...

[Hidden]

Dear all, sincere thanks for all your really helpful comments on this post. We'll be putting together a little montage of 12 RA life hacks later today so keep an eye out. Merry Christmas everybody from all of us at NRAS. Sally