Things can’t do properly anymore: What can’t you do... - NRAS

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Things can’t do properly anymore

essexgirl
essexgirl

What can’t you do properly anymore ....

I can’t .....

Walk down the stairs properly anymore

109 Replies
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I’m with you there Essexgirl . This time last year barely get up or down stairs .Been having physio getting better but gone are the days where I could dash up and down.

I can’t wear rings anymore 🥺

Sorry about the next one . Using the toilet at night so stiff hang off the radiator to get on and off.

This next one breaks my heart 💔 fashion shoes and heels 👠😥😥

All my exercise classes use to do at least 9 hours a week. Hiking 🥾 and I use to be a swimming official not a chance now. I could go on.....,

essexgirl
essexgirl in reply to J1707

Yh shoes 💔 I feel I want to live in trackies & ugg boots I used to be so trendy in the smart/casual

essexgirl
essexgirl in reply to J1707

Yep all of them 😢

Neonkittie17
Neonkittie17 in reply to J1707

Can you get a loo booster? I did after an op earlier this year and thinking of putting it back on! It helped a lot and it’s so easy to take off and clean it in the shower. The booster seat is 6-7 ins high. It has a lid too. It screws on easily on top of your existing seat. Doesn't damage your actual loo. I’d have had a crash landing too and hurt myself otherwise. Give it a go .. they are about £20-£25 on Amazon for a good sturdy one. (Maybe the hospital OT could source you one for less.) Oh and all your can’t do’s are sadly mine too. 🤨 However I’ve got a much bigger list of can do’s!😀 I was a long distance hiker and a super fir, fast sprinter and athlete and miss all that can still walk a bit but much less distance of course. x

J1707
J1707 in reply to Neonkittie17

Ooo never heard of those... going to look now thanks. I’m struggling walking at the moment really miss it ... but I will get back to it 🤞

Bacharia
Bacharia in reply to J1707

Definitely get one of those raised seats for the toilet. You can get different heights. My husband got me one from the social services disability aids warehouse/shop(?) It helped tremendously. It's bad enough needing help with all the things you've been doing since childhood, but needing help at the toilet is so demeaning and also it ties your helper to being around so much of the time, not to mention when you get up in the night you have to wake them. Go for it!

I’ll have a look , and yes all the can do’s is much better

BonnieG123
BonnieG123 in reply to J1707

Feeling for you 😞

Wedding rings and cycling as my balance so off at the moment BUT I can name many drugs without thinking now............................

BonnieG123
BonnieG123 in reply to Deeb2908

😞

Running is the thing I miss the most. I've been trying to get into cycling instead, but it doesn't give me the same feeling.

I do also walk downstairs very strangely at the moment!

essexgirl
essexgirl in reply to Smelliott

Yh the stairs lol my granddaughter is better & faster than me

Smelliott
Smelliott in reply to essexgirl

We're basically daleks.

Gnarli
Gnarli in reply to Smelliott

🤣

Jacorandax
Jacorandax in reply to Smelliott

Wish I could give this lots of likes!

No I can’t either. And why is going down the stairs harder than going up? 🤔

Deeb2908
Deeb2908 in reply to Lolabridge

More impact on your joints coming down.

Lolabridge
Lolabridge in reply to Deeb2908

😢

J1707
J1707 in reply to Lolabridge

I was told by my physio it’s the ligaments and tendons as well as the joints. All the inflammation during active disease and flares causes them to loose their elasticity and they shorten and tighten. I’m having physio to stretch and strengthen getting better but he said there will always be limitations and of course another flare or active disease sets us back again.

Neonkittie17
Neonkittie17 in reply to J1707

That’s exactly it and what my physio said too. My ligaments behind my knees can feel like someone is winding them so tight they will ping. I do a lot of knee strengthening exercises and stretching but I miss aqua/hydro every week and those couple of hours kept me supple and muscles and ligaments painfree. Now of course no pool open anymore so I’ve lost muscle and fitness too. I would love another exercise bike at home. I do have a chair cycle which sounds funny but it does work for your ankles and knees. Miss the warm hydro pool.

J1707
J1707 in reply to Neonkittie17

I wish we could see physios etc when diagnosed so we are prepared and already doing physio exercises to stop this happening . Surely cost effective in the long run...oh well common sense is a gift not learnt 🙄

Neonkittie17
Neonkittie17 in reply to J1707

I was fortunate to see one from the start and I agree that everyone should be able to. It makes a lot of sense to try prevent the damage I agree. I’d gone downhill so badly as I took an age to show rheumatoid in my blood results so they couldn’t preside any RA meds. I had to have hydro to help able to move. I don’t know sometimes how I got there but I did. The thought of the lovely warm pool water and moving with ease in it made me go. I had physio three times a week for about four months. Then I’ve been back a few times when joints have played up for advice. Ice packs on my swollen joints and wax baths for my hands and arms. He was the first person I heard talk about mindfulness. Excellent guy. He was so positive and helpful and uplifting too.

J1707
J1707 in reply to Neonkittie17

He’s a good one. Mine is good too always positive and encouraging just took 2years of mentioning the same thing again and again to any medic . Always passed on.. gp says up to Rheumy. Rheumatologist says let’s get the meds right all will be fine. Only see them every 12 month’s. Nurses say they will request physio through gp and the cycle begins again. In the end I emailed consultants secretary 4 weeks on the trot . Referral sent then Covid ... 4. Telephone appointments he trued and I tried eventually got a f2f 2 weeks ago .. dramatic improvement even if I do use a crutch now.

If public pools open why not hydro-pools?

Neonkittie17
Neonkittie17 in reply to J1707

Sorry you had to wait for your consultant to do something. I was offered physio by the rheumy the first meeting we had, they were and are very big on physiotherapy at my hospital.

I don’t know tbh are the hydro but it is at a school for disabled children and where many mentally disabled kids are waiting for us to finish in a large communal reception area or we are seeing them waiting to go home as we arrive etc. They wouldn’t be able to wear masks and it could be a safety thing? They are often coughing or shouting. Nothing aggressive .. just sadly their conditions. It is their facility we use so maybe they don’t want the private hydro groups in just now.

my old body...!!!!

I covered my full length dressing table mirror for two years ... just taken off a lace throw I draped over it (apart from when I washed it!) I haven’t wanted to look at myself in that large format!! I’m better now and I’m losing weight slowly.

I was sylph like but a tyre appeared a few years ago .. meds and meno! 🤨Not large, but the tyre needs to go!

J1707
J1707 in reply to Neonkittie17

I had a really good figure and looked youthful for my age. A photo of me 1year before diagnosis I looked about 30 ( I was 48) now look late 60s only 53🥺

essexgirl
essexgirl in reply to J1707

I know the feeling , people used to say to my daughter is that really your mum you look like sisters now it’s oh is this your mum 🤣🤣🤣

Neonkittie17
Neonkittie17 in reply to J1707

I think we often look and think ugh when we actually look fine. At the moment stress can make you feel awful too. People have alwuas though I was 18-20 years younger. I’m 60. I haven’t aged in the face for many years and I’m surprised given the RA. Only some grey hairs but they get highlights (usually!) My Mum looked like a girl until her 70s! It was amazing. No wrinkles right up to her 90s, I’ve some midriff weight to lose though and it’s hard at the moment. That gives your age away more. However the 50s is a difficult age for ladies with the M and how it changes the skin and body. I treat myself to some fab facial serum which gives my skin an extra boost. The ladies in my maternal family side all have/have had very youthful skin. So I think my baby face is hereditary, but the serum definitely helps. Water helps a lot too.

J1707
J1707 in reply to Neonkittie17

I spend a fortune on serums .. I should have just paid for the face lift😂😂especially the hangover eye lids . I went through the the change at 35. Fat does age you.. and the fact I shuffle and waddle.. dead give away 😂

essexgirl
essexgirl in reply to J1707

😂😂😂

That’s good & yes plenty of water

Bless you essexgirl, I have been there and do go there sometimes in a bad flare

I know how you feel, its so heartbreaking and frustrating

but please stay strong, once your on the right treatment you will feel better again and be able to do things again

big hugs xxx

I can't run, can't walk to far. I was really happy when I could make it round the local Sainsburys without having to sit down or use my mobility scooter. I couldn't lift my left arm up about a month ago but after my steroid shot I can do that now.

sorry read your thread wrong, I thought it read why can't I do things properly anymore, hence why my heart went out to you, it still does but you know what I mean tee hee

Caza
Caza in reply to VeronicaF

It does read can’t

VeronicaF
VeronicaF in reply to Caza

it does but she was more asking which I didn't read

Stairs-sit on the ground for a picnic-stand up for any length of time going to see live bands etc..a thing of the past-baths-hairdrying painful 😖 so so many things- worst 👠😢No more lovely shoes thank goodness trainers & chunky boots are in!!

MadBunny
MadBunny in reply to Caza

I'm with you on the standing up at gigs. Sitting down's just not the same🎸I've resigned myself to wearing trainers and chunky boots nowadays but I can't do laces up easily. I did just about manage to wear nice shoes with heels at my niece's 18th last year- by sitting down most of the time😊

Caza
Caza in reply to MadBunny

Yep uggs trainers & flip flops for me ☹️ Weddings etc are a nightmare. I used to be last one on the dance floor, now I have to weigh it up is it worth the pain & will I remember where I’ve left my shoes & will I get them back on to go home Obviously the answer depends on the wine intake. 🤦‍♀️

essexgirl
essexgirl in reply to Caza

🤣🤣

MadBunny
MadBunny in reply to Caza

😊😊

Oooh. Baths, I can't get out. Even if I can turn to get on my knees it hurts so much I've given up ☹

Pippy25
Pippy25 in reply to Gnarli

No baths for me too! Those halcyon days of a good soak in a bath filled with bubbles hey.

Gnarli
Gnarli in reply to Pippy25

Not without Sparshatts crane hire on standby

essexgirl
essexgirl in reply to Gnarli

😂

Pippy25
Pippy25 in reply to Gnarli

Or the local fire station and a fireman's lift.... ooh er missus!

Gnarli
Gnarli in reply to Pippy25

Now then. Let's not get overexcited here

Caza
Caza in reply to Gnarli

😉

MadBunny
MadBunny in reply to Caza

😄😄😄

essexgirl
essexgirl in reply to Gnarli

Omg I got out finally after sitting in the bath with no water feeezing me tits off for about 10 mins , don’t sound long but when your naked in empty bath it seems like hours lol , I turned round on me knees thinking that would be better But NO it was worse , I finally pulled on the tap and got up bashing me knee on the side , so now I don’t have a bath unless my hands are not swollen I just have to shower , but there’s nothing like laying in a nice hot bath

Gnarli
Gnarli in reply to essexgirl

Snap. Himself offered to help me out but no. Just no.

essexgirl
essexgirl in reply to Gnarli

🤣🤣 definitely not

Gnarli
Gnarli in reply to essexgirl

🤣🤣

thelmar
thelmar in reply to Gnarli

I treated myself to a Mangar bathing pillow - have a look at CareCo website. Not cheap but I can now soak in the bath. At least I didn’t have to pay VAT on it.

essexgirl
essexgirl in reply to thelmar

I’ll go have a look

thelmar

Gnarli
Gnarli in reply to thelmar

Thank you for the tip T! My fingers will be doing some serious walking today

Neonkittie17
Neonkittie17 in reply to Gnarli

I haven’t had a bath since 1998! 🤭 Showers for me 😁 Most baths aren't wide enough to bring my knees round and it would be too hard on the hips to get up and down. I can’t pit pressure on my knees anyhow so I waved goodbye to baths many years ago. I don’t want to do the walk in bath thing .. so showers are fine, but a good soak did relax and ease your aches and pains. x

Nothing like a hot bubbly soak but we have to do what is able

I was given an inflatable bath bubble by the OT dept at hospital back in the 90s and it used to deflate and come unstuck and I got stuck in the bath for over an hour. I’d kind of anticipated it and put a large bath towel on the side of the basin so I let the water out and covered myself with the towel. After that decided no bath bubble and no baths!

J1707
J1707 in reply to Neonkittie17

Was it like a jacuzzi as the air left it 😂😂that’s the image I’ve got

essexgirl
essexgirl in reply to J1707

🤣🤣🤣

Just thought of something else... i can’t get out of my sofa And fill my day just being busy .

Neonkittie17
Neonkittie17 in reply to J1707

I have to bump my ass up to the (sturdy!) sofa arm and get up in two stages and press on my stick! Getting up from car seats and sofas is my most difficult thing I do.

J1707
J1707 in reply to Neonkittie17

The image in my head 😂😂

I can’t type on my phone ... have to dictate and nine times out of ten it’s wrong . I think it had a problem with my Scottish accent lol! I used to be a fitness instructor so missing that part of my life .... and oh how I miss my beautiful engagement ring and high heeled shoes 💃💍👠

essexgirl
essexgirl in reply to LinaM

It is the shoes isn’t it ... lovely shoes makes you feel good

Gnarli
Gnarli in reply to essexgirl

Sweetheart, it's always the shoes

essexgirl
essexgirl in reply to Gnarli

🤣 yep

High heels, I really miss them, if I do wear a pair I really suffer afterwords. Also I’m only 5 foot and everyone thinks I’ve shrunk, never wore trainers in my life until now. I did get a pink sparkly pair to cheer me up 😂

essexgirl
essexgirl in reply to Lizard28

Yh sometimes you think I will suffer next day just to have a few hours in heels

Pink sparkly brilliant 😁

It makes me too upset to list things I can't do any more because of RA

essexgirl
essexgirl in reply to Tedx

😢

I can’t walk up or down the stairs properly anymore. I can’t wear the shoes I love.

What I can do is talk to my lovely friends, drive around beautiful Norfolk, serve our wonderful clients every day, tell my team how fabulous they are. What I can do outweighs what I can’t by a country mile. Better not to dwell on the negatives 💕💕🥰 Focus on what is good and more of that will appear in your life ❤️ Gratitude

I feel very lucky atm as my symptoms are very well controlled by the meds. My legs are not too affected - though they have been (aaagh stairs!). My hands are worse. Am fortunately still able to knit and play ukelele but only for a very short time until my fingers ‘lock‘. I really notice that I can’t cross my fingers 🤞butI can live without that!

The brain fog is a scary symptom and often finds me unable to explain myself or find a word or words. And of course I then sometimes wonder if it’s not just the RD........

Like you, walk up and downstairs as before but especially at this time of year clear up the garden for winter.

essexgirl
essexgirl in reply to Sallysuk

Yh definitely I look out the window and wish I could get out there and clear away

Also I can’t do as much as I would like with the grandchildren, I have 7 youngest only 2 & half & 5years , that makes me very sad 😢

So many things I can't do - list would be too long. Trouble is they crept up on me one by one stealthily and I just adapted or maladapted to each one as it arose and I am so daft I didn't realise the pattern until too late. Still, I can still do a lot of things even if nit in a very elegant manner and have found lots of aids to help, so have to try not to dwell on my limitations. Easier said than done, of course. 😒

Ah yes that's a groups init "what did you used to do" ?

On top of RA have OA so both hips are gone as well as the left knee.

End of this month will have the right hip replaced.

However walking is reduced to shuffling from lounge to kitchen/ bathroom.

Stairs are a horror show in so much pain using them.

My biggest adventure is doing a two step shuffle round my garden. haha

Hands now refuse to turn, open , grab, lift , hold anything I use.

Till I went on antidepressant I couldn't think so much brain fog.

However the good news is I can still smile and laugh so keep doing those ;)

Since being on Lefunamide I have improved, before this walking any distance was impossible, going up and down stairs very difficult. My hands & feet are quite bad but even them are better than they used to be. The problem is they have to keep stopping my lefunamide due to bloods and high blood pressure, which means I start to drop back again.

essexgirl
essexgirl in reply to Reving

Can’t they put you onto something else Reving

Im already on Safasalazine and have tried Methotrexate which I couldn't tolerate.

essexgirl
essexgirl in reply to Reving

Isn’t it so frustrating it’s like 2 steps forward & three steps back , fingers crossed it gets better for you

Happy5
Happy5 in reply to essexgirl

or not lol

Thanks

Can’t walk on sand any more! Stairs are like Everest and I only visit relatives with a downstairs toilet! Haven’t been shopping since covid knee could not cope. Unfortunately I can still eat so I can put away choc and cake. Not the same shape anymore either- clothes from tent shop!

Funny .... but not your abilities or disabilities, I actually put on weight on lockdown as I don’t eat cakes & biscuits, my downfall is crisps but not in bulk lol

Type as easily or as fast as I used to. I’m an author, so this is a royal pain!

essexgirl
essexgirl in reply to Harry_20

I bet it is ... do you wear the copper gloves

Harry_20
Harry_20 in reply to essexgirl

I’ve just ordered two pairs! Hope they do the job. Thanks x

essexgirl
essexgirl in reply to Harry_20

Let me know how you get on with them

Thought of another ..I know here she goes again 😁.

I can no longer be spontaneous. Once soon a time wold be watching tv and suddenly jump up and say right I’m painting the bedroom and off I go it’s done in a day. Can’t do lunch spontaneously.. it’s a military plan .., 🤦‍♀️

essexgirl
essexgirl in reply to J1707

🤣🤣 I’ve not got the energy for that lol

Happy5
Happy5 in reply to J1707

Ah yes thought of anything spontaneous sends me in a blind panic , don't panic, don't panic

I to have trouble with the stairs. I usually use a cane to walk around. I fought using one for a while. I don't need one around the house. When I first started having pain I would say at least I can still walk! Now I just got a wheel chair. I have avoided going anywhere that I had to walk far. My insurance paid for it with a prescription from my Doctor. Even though I don't go any where now because of covid. We just have to get the things we need to live with our frailties. Just doing things around the house can be exhausting and painful.

You know what gets to me the most? It's not saying goodbye to my last pair of heels, hard as that was. It's not knowing day to day what I'll be able or unable to do! Maybe I can open a jar (okay, unlikely) or read on my Kindle or do yoga. Maybe I'll start to do any of those and yelp with pain. I have to keep asking my rheumatologist, "Is this as good as it gets?"

I feel sure I could adjust to the changes if they were consistent!

essexgirl
essexgirl in reply to RAreyna

It’s all trial & error , what works for others doesn’t necessarily work for you , so you have to try to see if it makes a difference to you

I miss being .... me . ,!

essexgirl
essexgirl in reply to tubbytomo

Me too , I used to be life & soul of the party ☹️

Happy5
Happy5 in reply to tubbytomo

who are you ? ;)

Kneel.

Write.

Run.

Oh Yh kneeling ... if I do I’m in pain the next day

I can’t walk up or down stairs anymore. I can’t dance anymore. 😔

essexgirl
essexgirl in reply to BonnieG123

I couldn’t dance anyway 😉

BonnieG123
BonnieG123 in reply to essexgirl

I did country western with the boots and all! So much fun and good exercise. My good ole days.

My cousin, a physio, said not to worry about trying to write again. Apparently you don’t use the muscles and joints you use for writing to do anything else. Much better to concentrate on keeping your fingers moving!

That is very true creakywrists

Dancing on the other hand !!! 😁

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