November the eighth and I will feel great !!!!! Let's... - NRAS

NRAS

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November the eighth and I will feel great !!!!! Let's start a positive thinking week !!!'

Kb5417 profile image
37 Replies

I read so many negative posts on here and I know ra is painful, the tmt and meds are scary, they don't always work and it's a life sized rollercoaster ride x so for this week I would like to hear positive stories.

It doesn't have to be huge ! Something small will do !! But one thing that made you happy or smile or got you through the day x

Yes this disease sucks but it doesn't have to drain us of our resilience, humour or enjoyment of what's left of our time here ! It doesn't have to define us !!!!

Let's start the 'November eight and I will feel great' week x

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Kb5417 profile image
Kb5417
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37 Replies
medway-lady profile image
medway-lady

I never feel negative as its not my nature. But I'm in remission, life is norma. No pain, no swelling the odd bit of fatigue but not getting any younger. LOL

So this week is we begin the decorating, or rather make lots and tea and coffee for the chaps coming in to do it !! Just hoping that the wallpaper looks as good on the walls as it does in the sample books. If not its his fault, if it is great its because I have good taste. lol

steve55 profile image
steve55 in reply to medway-lady

Medway my wife's been in remission for 14 years, having been diagnosed with RA in 98 aged 37.

Her meds were moblic and Sulphasalazine in 2003 she appeared to be showing no signs and was asked by the consultant to gradually wean off the medication. That was that.

Before that though watching her trying to get out of bed hurt, because there was nothing I could do to help.

On the positive side at work she had a chair with a foot rest and an ergonomic keyboard.

Strangley though my wife's attacks came in warm weather!!!

Mandalou profile image
Mandalou

I'm happy because I've just worked all night and feel ok.

I feel so blessed to have come out the other side after the horror of last year. There is hope folks.

Those pesky drugs seem to be doing their thang!

Mx

JEM95 profile image
JEM95 in reply to Mandalou

I'm feeling good - in remission again. No sausage fingers for me 😀 At least until the next time!

I'll be making the most of feeling relatively better as I know it's a bit of an up and down condition.

Jefflin profile image
Jefflin in reply to JEM95

Yay for no sausage fingers! Or toes!

sylvi profile image
sylvi

Brilliant idea darling.xxxx

Brissygrl profile image
Brissygrl

Thank you for starting this. As a newbie to these forums it was all starting to feel a bit scary and overwhelming. My small thing is genuine relief that people at work are supportive and helpful. The OT came to see me and do an assessment of my desk/work station and advised strategies for helping with ergonomics and recommended other professionals I can see for help/support. Nice to know there is more I can do to help myself than I was considering.

benjijen profile image
benjijen in reply to Brissygrl

You've hit the nail on the head there! We can do quite a bit to help ourselves as well. It takes effort but is well worth it.

benjijen profile image
benjijen

November 10th will be in hospital having 3 narrowings in my heart dealt with. Can then start gradual exercising again to build up muscle and help with walking and losing weight. That will also help. Back to Rheumy on 13th December and hoping inflammation hasn't returned. Birthday 12th November so life will begin again at 63!!! Feeling very positive at the moment.

Jay-bird profile image
Jay-bird in reply to benjijen

Well done you! I too am 63 and am certainly NOT ready to sit around reminiscing.

jlmack profile image
jlmack

I started running in June, very slowly doing couch to 5k, with a local running group. I now run 2x a week (average 15km a week) and ran a Half Marathon on Oct 9th raising £1440 for NRAS. I've made new friends and have a new social scene. My children see me doing something positive and it's helped my depression. Last year was so hideous and dark, 2016 has been a lot more positive.

There is hope. I'm on Mtx 25mg inj, hydroxychloroquine and Sulphathalazine. Maxed out on dosage. Still not in remission, needed a steroid shot 2 weeks ago, but the pros out Way the cons.

I'm glad I've pushed myself, if scary, when I was diagnosed I thought I'd never run again! Happy week everyone and hope it's as pain free as possible.

AgedCrone profile image
AgedCrone

I agree with you....I think sometimes we expect every new pill to work as soon as we swallow it.

I just had my first two infusions of RTX & I feel ten times worse than I did before I started........but that's probably par for the course & I'm busy planning my trip to the sun for Christmas.......shivering whilst I pick out swimsuits & flip flops makes me forget my aches & pains!

Hope everyone feels great on Nov 8........at least we don't have to vote in

'That Election"!

Kazzyrocks2 profile image
Kazzyrocks2

Thanks for your post :-) I'm fairly new to this forum and this is my first post.

Your post made me smile and reflect that for myself things are improving in terms of my attitude and understanding of how to manage as well as enjoy life alongside ra.

In past few months regular group and individual Pilates sessions have increased my flexibility and social circle and occupational therapy has helped me understand how my joints work and how to look after myself more. A new to me automatic drive car has made things easier in the wrists and the sporty style has brought some much needed fun to my days! Overall, I'm taking small but positive steps forward. Things are feeling generally more hopeful.

AgedCrone profile image
AgedCrone

Cost apart I can't understand why everyone doesn't drive an automatic car!

I tried to hire one in Spain & it was five times more expensive than a manual........ I used the bus!

LindaLegs profile image
LindaLegs

I'm starting my day with a nice hot shower with hubby soaping me down which is never a bad thing, though some of my bits are better polished than others!

Then when I'm dressed in my favourite jeans and my fluffy top we're heading out to a garden centre for a browse and a coffee and perhaps his wallet might be a bit lighter when we get home...... can't have him carrying heavy weights around after all!

We shall have lunch in our conservatory where we have a lovely view of our garden which is wearing it's beautiful Autumn colours at the moment.

This afternoon I have to write some Christmas letters to my friends ready, in good time, for posting in December so there is not mad panic with posting them.

After tea, tonight I shall be picked up for my French lesson as I enjoy holding up the rest of the class because I am the dunce and they need someone to keep them at the top.

Home again and it's snuggle up on the sofa with hubby with a good cup of tea and a chocolate biscuit or three under our shared blanket as we watch TV before bed!

Hope you all something good to enjoy this week.

Luv, Legs X

in reply to LindaLegs

Ha ha ha - Nice post!

Karen77 profile image
Karen77 in reply to LindaLegs

That sounds like the best day ever!

linda-5502 profile image
linda-5502

I was watching TV last night country file. Thee was a young lady who had new "legs and did this walk to raise money. What a brave young lady to cope with all that pain it made me feel very humble and yes to look at the positives not the negatives of this disease and to count my blessings which I do a.lot. today is a new day sun is shining will make my xmas cards

Happy times for us all Xxxxx

Jay-bird profile image
Jay-bird

Good idea! I don't have an anecdote but I can tell you a little routine that almost always picks me up. In the morning I do some mobilisation exercises whilst I have my first cup of tea. Then I usually pick up whatever I'm reading and settle in for a while. However, I have discovered that especially now when the days are short, I end up quite depressed by mid-afternoon. So, from today, I have a new regime or at least the regime I follow when I am having a visitor or going out. After I've done my exercises I will get out of bed and have my morning shower/bath/wash and ask my husband to help me get dressed for the day ahead. I am going to make a point of getting out of my pyjamas early and get into some comfy home=clothes if I'm going to be at home or else some going-out clothes. Days that start like this I find end up being better than the ones that start with my lying in bed for 3-4 hours even if I say in and read or sew. Have a great November everybody! Jay-bird

npkb profile image
npkb in reply to Jay-bird

Good on you jaybird! Speaking as one who can take forever to get going in the morning - still in my dressing gown now - it just doesn't work when it's dark again at 4.00pm. Like you, I will now try to pretend it's a going out day and get a wriggle on instead of lolling about waiting to feel sufficiently awake and active ☺

in reply to npkb

yeah - To me it is kind of like not making my bed. When it is time to get into it at night, it just doesn't feel right if it was unmade all day :-)

npkb profile image
npkb

The glorious gold of autumn leaves vibrant against a clear blue sky, a chill in the air as red kites circle above. Isn't autumn just the best time? All around the world is going mad but it's November the 8 and I feel GREAT!

Kb I love it! Let's make it a national day of joy - no negative thoughts allowed. (to be repeated on the 8th of every month - 8 is great)

helenlw7 profile image
helenlw7

I went for a 2 mile walk on Saturday through rural Gloucestershire with my husband, son, granddaughter and our dog, Alfie. It's the longest I've walked for a very long time. Mind you I suffered for it on Sunday but the suffering was worth it for the pleasure I had on the day.

stbernhard profile image
stbernhard

I had a lovely chat and a good laugh with a couple of other OAPs in the greengrocers this morning. Always a good way to start the day. Keep up the positivity. All the very best.

Kb5417 profile image
Kb5417

Aw you crazy wonderful and positive bunch xx

I'm having a lazy day as I've just finished a long week working. I'm currently sat in my Harry Potter pjs drinking hot chocolate and catching up with poldark ( eye candy and an instant mood lifter in my book 😘 ).

Later I will be dusting off the cobwebs and taking the pooches for a lovely walk in this glorious November sunshine ☀️

Stay positive and thank you all for your replies x

Jefflin profile image
Jefflin

Good things I noticed today:

A ladybird was on my car side mirror when I got in it this morning. Such a lovely thing, I sat and looked at it for ages before it flew off.

My daughter playing the piano so beautifully this afternoon.

xo

rawillbebeaten profile image
rawillbebeaten

I agree that staying positive is the way to go. I do have the odd wobble and a few hours when I feel sorry for myself, but by and large I look on the bright side. This has been a tough year and some things beyond my control will not improve, BUT ... I'm around to support my Dad, and I have a great bunch of friends and work colleagues. I've had to be in at home more than I'd like, but I've got really in to Strictly this year and seeing beautiful and entertaining dances puts a smile on my face. I have an on-going issue with the nerves in my feet plus a foot drop, BUT I'm still walking and it is much better that it was.

The Autumn colours are so fantastic so get out and about before the season changes again. After that get cosy at home with some favourite treats and let the weather do it's worst.

Wishing a good or OK week for everyone, with something in it that lifts your spirits

Michele x

Hi Kb - My happy things for this week:

Today I am going to bring in the plant people for the fall and winter :-). I move the plants out all summer, then bring them in to protect them. It makes me happy to do both things because they kind of fade just a little in the winter, and they grow robust outside. BUT, I love the fresh air smell they bring into the house and the happy feelings I get when I see them.

I am also going to start some cheese this week. I have tried making it before, but started traveling for a living and stopped. Now that I am no longer traveling, I am working on making more and more things from scratch. Sooo, cheese!

Today is also Kale chips - yumm

I am also going to research the use of Essential Oils for inflammation.

So, those are my happy things today. Hope your week is wonderful!

Karen77 profile image
Karen77

Good on you! I whined for months over not being able to take MTX or anything else and watching myself flare, but now that I am feeling better (and taking Arava), I haven't written a single post!

So, my friends, guess what? I started feeling better toward the end of September (only starting Arava Oct 4) and have managed to... run up the hill to my kids' school bus stop (I'm never on time), participate in the school's "Walking Wednesdays" throughout October, get out of bed and not immediately put on my slippers, get the toothpaste out of the tube without using my elbow, lift a heavy pot out of the cupboard without two hands & a grunt, etc...

I was able to lead a 4-hour Beaver Scouts hike on Saturday! I was exhausted afterward, but my RA remained quiet! :) Fingers crossed that the sunny days continue (I can *almost* cross them... okay, not really, lol).

Enjoy your week!

in reply to Karen77

Hi Karen77 - Those are absolutely wonderful things - I think for me, when I feel good, I forget that I didn't feel good and it is easy to miss. So nice things that have been able to do!

Karen77 profile image
Karen77 in reply to

I am very much like you! It's like, three weeks after you've been running up and down the stairs you realize, ohmygosh I can run up and down the stairs!! That's usually when I get all giddy and call my husband to watch me do something completely normal and routine - as though I'm looking for the cheers we reserve for a 1-year old learning to walk! haha :D

in reply to Karen77

Ha ha ha - Me too! I do the same thing. Thank God my husband is used to me and just watches, high fives me and grins.. Nah - there is nothing to feel silly about there.. It's just wonderful when it works!

The dog knows I'm not feeling well and keeps lying on top of me. While he is heavy, he is also warm and snuggly. It makes me feel very loved and much better. He's my positive. :)

mary53 profile image
mary53

I'm having a flare with the usual pain and exhaustion.....but I have enjoyed watching The Crown on TV. ...on to episode nine already . ..silver lining!

Ali_H profile image
Ali_H

Two days off last week due to cough and head cold thing but back today and had a lovely day with the special ed youngsters I teach (and staff were great too😎).

Drs after school about X-ray referral and he listened to me explain that I thought my shoulder and neck difficulties were more dystonia related and he has ordered the X-ray physio asked for and is going to ask his neurology colleagues if there is a specialist dystonia practitioner in the area who may be able to help further if the X-ray comes back clear of any RA involvement - a lovely chap and I am very fortunate to have him as my GP 🙃

OH and we've just booked the first week of xmas break in warmer Spain (all adult hotel with a spa area 👏😎😎)

And now Mattcass has posted to let us know how he is doing 😀. All I need now is for Batts to post one of her poems to top off this successful day.

Ali

net2012 profile image
net2012

I danced and danced last Saturday night after thinking I may never be able to dance again after having a nasty flare in my ankle that caused no end of problems for a year. It was the best thing ever, dancing that is not the flare :)

Lorin profile image
Lorin

I like your thinking.

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