Just Being Me: Is it just me only I have been reading... - NRAS

NRAS
26,734 members30,670 posts

Just Being Me

Pippy25
Pippy25
65 Replies

Is it just me only I have been reading and commenting on some of the posts lately and there are a few common themes we all seem to share. It feels like we are all on this journey that is still very much confused with other illnesses, misunderstood or not even recognised in it's own right. I don't know about you but I tire of 'ooh you are too young to have that' when I was initially diagnosed which has now changed to the 'it's an age thing now you are getting old' or 'my Auntie Ethel had a touch of arthritis in her left finger.' When all we want is some validation for this disease in it's own right and an understanding that it is not OA or any other Rheumatics but RA(D) in it's own right. Again there have been a lot of posts on fatigue, which is not as I get 'ooh I didn't get a wink of sleep last night and am so tired.' For me it feels like I am trudging through tar in a fog and every step I take roots me to the floor with exhaustion and pain. My body simply gives up. It's not that people with RA want pity or sympathy, but a level of understanding, some compassion and acknowledgement from be it family, friends, employers or co workers that while I may look well on the outside that may not always be the case. Just because you can't see my pain does not mean I'm not feeling it. I know from the posts I have read the sheer determination within us to still feel as we rightly should to raise this awareness of RA and I hope this will lead to more research in the future. Oh and on a lighter note, the times I get ' You are looking well, you've some lovely rosy cheeks there'...well that's a symptom of my Lupus and I would much rather be pale and wan and feel well rather than those rosy cheeks that you could fry an egg on! :-) Sending you all my best wishes and hope your day is as warm and bright (as my cheeks currently are!!) As the title at the top says...just being me.

65 Replies
oldestnewest
Mmrr

Spot on. I try to deal with all the 'silly' comments by accepting that people do mean well, but it is hard going to do so when you feel rubbish. People don't seem to realise that these type of comments can be so undermining of our life experience.

I don't expect people to be knowledgeable about a disease they have no involvement with, just don't say, yeah I have a sore finger, I don't have the energy I used to.....blah, blah, blah.

My mums amongst the worst culprit in my life, it can be very difficult at times to accept her comments.

5 likes
Reply
Pippy25
Pippy25
in reply to Mmrr

Totally agree with you, people don't mean in most cases to upset you with their comments. Perhaps it's because of no or little understanding or ignorance, maybe their way of trying to be sympathetic even in a I don't really understand 'but I remember Mr. Bloggs having a nasty twinge in his right knee, had it for years he did' kind of way.... and yes my family are the worst offenders for lack of understanding and acceptance I'm afraid despite my numerous attempts to explain.

2 likes
Reply
Mmrr
Mmrr
in reply to Pippy25

I was in a wee art gallery recently, a woman asked me why my thumbs were splinted. I said RD, och that can be so debilitating was her reply. We said no more about it. That's all it takes.

2 likes
Reply
Pippy25
Pippy25
in reply to Mmrr

That's all it takes. I once was asked when I was wearing my therapeutic gloves if I had suffered burns on my hands. Sometimes getting a chance to have a little dialogue to raise awareness can be helpful.

2 likes
Reply
AgedCrone
AgedCrone
in reply to Mmrr

It must be very wearing to have to put up with all the negativity we are often subjected to - from close family.

I try to ignore comments like “ all those drugs only make you worse “ to “......but you had cancer & didn’t moan as much about that.,,you should pull yourself together”...both from a very old EX friend.

I don’t want the pity party....but anyone who makes remarks like the above is now on my “see no more” list....but obviously that is not possible with family.

We all cope in our own way, & we really don’t need to be patronised by those who expect to be molly coddled when they break a finger nail.

It’s amazing how much better you feel once you refuse to put up with the daft comments....... a withering “Oh, I’ll be fine “ usually stops them in their tracks..........because all they really want to talk about is their own health.

I know that doesn’t sound very sympathetic ......but having had RD for a fair old time....my patience is exhausted.

5 likes
Reply
Mmrr
Mmrr
in reply to AgedCrone

It's really only my mum, my 3 children, partner and the friends I see regularly are great. I don't see 'friends' who are not supportive anymore.

We have all tried to explain to my mum what RD is, but she just doesn't get it. I'm not being unkind, but she isn't very bright, a concrete thinker. She still expects me to do things for her, despite the fact that she is a very young fit and healthy 81 year old. I just respond by asking her if she thinks I'm well enough to ....hang pictures, hooks and hammer lying on the table ! My thumbs are in splints and my right wrist joint looks like someone has pumped it up with a balloon pump.

3 likes
Reply
Dobcross1
Dobcross1
in reply to Mmrr

My mum asked me last week when I was going to take up dancing again - I told her I have trouble walking on my ankles some days, never mind jiving on them! Response "oh". You've got to laugh 🙄😁

3 likes
Reply
Pippy25
Pippy25
in reply to Mmrr

Yes sometimes expectations are just too high and as you say even though you explain they just don't get it.

1 like
Reply
AgedCrone
AgedCrone
in reply to Mmrr

I’m nearly your Mum’s age & when my hands & shoulders allow...

I hang pictures, clean windows & anything else that needs doing.

I regard age as a number on a piece of paper ....some people are useless at 21 .....others can conquer the world at 81.

I hope I am the latter...altho what I intend to do to conquer it.....I have No Idea!🤯

3 likes
Reply
Mmrr
Mmrr
in reply to AgedCrone

In many ways she has been spoiled throughout her adult life. My step father did everything, she doesn't drive, he drove her anywhere she wanted to go, shopping, friends, holidays, just because...

And was very handy, and cooked and cleaned, I can't think of anything he ever refused her.

I loved him greatly too. But he died 4 years ago and mum is now helpless ( learned helplessness) and lives hours from her family. She has high expectations of us that none of us can meet, particularly me for obvious reasons.

1 like
Reply
Mmrr
Mmrr
in reply to AgedCrone

In many ways she has been spoiled throughout her adult life. My step father did everything, she doesn't drive, he drove her anywhere she wanted to go, shopping, friends, holidays, just because...

And was very handy, and cooked and cleaned, I can't think of anything he ever refused her.

I loved him greatly too. But he died 4 years ago and mum is now helpless ( learned helplessness) and lives hours from her family. She has high expectations of us that none of us can meet, particularly me for obvious reasons.

Reply
AgedCrone
AgedCrone
in reply to Mmrr

It is sad how some people don’t make any plans for when the time comes they need help.

After all most people will need a bit of assistance as they get into their 80’s....especially when they live alone.

I can’t change light bulbs now... so every time somebody over 6 foot comes into the house they are grabbed to change which ever bulbs have recently popped !

I hope to be able to stay in my own home for a few years yet....but when I slip off the ladder one time too many, I know I will need to move to a retirement community.

But tbh from what I see of them from friends living in them....I think I would hate It!

2 likes
Reply
Mmrr
Mmrr
in reply to AgedCrone

I've just bought a mid terraced retirement bungalow. No shared lounges or anything like it. I have my own back and front door, set in a quadrangle. My flat was just getting too much, too big forme.

Reply
Pippy25
Pippy25
in reply to Mmrr

Ooh that sounds nice hope it is a much better layout and lifestyle for you. I would dearly love a bungalow.

1 like
Reply
AgedCrone
AgedCrone
in reply to Mmrr

Unfortunately where I live that sort of thing is not an option.

I have been looking for two or three years now for a two bedroom bungalow. There are two choices ....you buy something you can afford that needs the same amount of money spent on it to bring it back to an acceptable condition, or you find what you want & unless you’ve got the odd half million hanging around..... you stay where you are!

Maybe when I hit 90,I’ll be so Ga Ga....I won’t care where I go as long as I’m warm & fed regularly?

1 like
Reply
Pippy25
Pippy25
in reply to AgedCrone

Same here with regards to bungalows, they are way out of my price range and any social housing bungalows I have been deemed as no priority because I live in a ground floor flat.....with at least six people living above me and a barking dog!

Reply
AgedCrone
AgedCrone
in reply to Pippy25

I’m fortunate in that I live in a house close to a local Cornershop and near a bus stop ..... which is another problem when looking for somewhere to go as we age .

I did see a little bungalow that would’ve suited me beautifully, apart from the fact that it was miles and miles from anything resembling civilisation...... which I guess is why I could afford it?

My thinking at the moment.... is when the need arises to convert the dining room into a bedroom the downstairs cloakroom into a shower room and hang a curtain at the bottom of the stairs and pretend I live in a bungalow !

Got to go to the opticians now ....I sat on my glasses and I can only see through them if I put my head on my shoulder !

3 likes
Reply
Pippy25
Pippy25
in reply to AgedCrone

Hope you get them fixed. Take care

Reply
AgedCrone
AgedCrone
in reply to Pippy25

So do I..... I know I have a spare pair somewhere but I cannot find them anywhere !

Reply
Mmrr
Mmrr
in reply to AgedCrone

I'm moving to the outskirts of the city to be able to afford it. Only one bedroom too, but it's all I can afford. It will be fine forme.

1 like
Reply
AgedCrone
AgedCrone
in reply to Mmrr

When we left the bungalow I liked .....we drove for 17 minutes before we saw a shop.....I already live out of town...but we do have a corner shop ...but we have just been told the PO in the shop is now only opening until 1pm daily, & will be closed on Saturdays.

We have lots of elderly people here who still collect their pensions from there so I hope they have all read the little notice announcing the new hours.

1 like
Reply
Mmrr
Mmrr
in reply to AgedCrone

The wee house I am moving too was well chosen. Seconds from the bus stop to Edinburgh and beyond, the village centre is has well stocked shop, pharmacist, coffee shop, hairdressers, library and monthly farmers market.

I'm moving because my flat , in Edinburgh apart from being too big is a 7 minute walk to the bus stop which I can't do anymore. So I've been really careful in my choice.

1 like
Reply
Pippy25
Pippy25
in reply to Mmrr

Sounds perfect for you and I hope you will be so happy there.

1 like
Reply
AgedCrone
AgedCrone
in reply to Mmrr

You are very fortunate. I am still looking....but will put my search on hold now until the Spring.

I recently had a look at a very nice retirement flat being sold by one of the well known retirement builders. It was just a look .....as a two bedroom leasehold flat with no private outside space was being sold for more than my three bed Freehold house with a garage & garden.

Things didn’t start well, as when they sent me the information they didn’t put enough postage on the envelope and I had to pay £1.50 & drive to the PO collection office to actually get it.

When I got it ..... it was a case of laugh or cry. They listed the facilities being offered, which included domestic services-which were costed out in 15 minute sections.

You could have an early morning 15 minute visit from a domestic worker to help you clear up after breakfast. (Dah!)

This would cost you £3.57. (That is a rate of £14.28 an hour on Monday to Friday... it went up by 50% on Saturdays, Sundays and Bank Holidays ....that is £21.42 per hour if my math is correct ......so one visit of 15 mins per day would be almost£30 a week.(£1560pa...Ouch!) The worst thing was it appeared you had to use their domestic workers at those prices....you couldn’t employ anyone privately. Although how they would enforce that I don’t know.

You could also buy a parking space. They then proceeded to tell you you could use this parking space for the whole time you owned the apartment . Good of them I thought!

By this time the friend and I who were reading this were in stitches. When we finally added up the cost of living in this 2 bed apartment it worked out at something like £14,000 a year ...the Service charge alone was £750pm..... & all it covered was outside window cleaning, light & heat in the public areas & mowing a few bits of grass!

That was without the council tax because they said they couldn’t tell us that as it hadn’t been decided yet.

That was what the builder told me when I moved to the house I am now living in ....although they lied and said it was Band D...but when I came to get my council tax demand it was Band E ! The person at the council who I queried the Band with, said builders do this all the time .

So when the woman phoned to ask how I would like to pay the Deposit (!)& I said I wouldn’t be proceeding with a purchase she went ballistic...ranting on about what a good deal they were offering....she got on my wick so much.... I told her if they couldn’t even manage to weigh an envelope sending me the information & put on the right postage ....so that I actually had to drive to the collection office & pay to get it...I doubted their efficiency .......so I would be looking elsewhere.

That did not go down well...she slammed the phone down.

I guess I’ll be staying put for the foreseeable future.

1 like
Reply
Mmrr
Mmrr
in reply to AgedCrone

Lol

Sounds like you made the correct choice !

Reply
Pippy25
Pippy25
in reply to AgedCrone

Yes I don't want pity parties or patronising...talk with me that's all I ask.

Reply
AgedCrone
AgedCrone
in reply to Pippy25

I just get so fed up with being expected to do everything I could do Pre RD- the attitude - when I could hardly move my arms - that I should be the designated driver finished me off!

The real friends do listen...some understand.....but most just can’t get their head around the fact that RD is not just a bit of a pain in a wonky finger.....”No dear it won’t go away if I rest it”!

I think disassociating the word ARTHRITIS with Rheumatoid might make some people think a bit more.

1 like
Reply
Mmrr
Mmrr
in reply to AgedCrone

RD not RA !

2 likes
Reply
AgedCrone
AgedCrone
in reply to Mmrr

Yep! But as recent posts have shown- those in a position to actually do this - don’t!

Reply
Kerensa21
Kerensa21
in reply to AgedCrone

Couldn’t agree more AC; even members of my rheumatology dept refer to it as ‘arthritis’ which infuriates me: it’s a systemic, chronic autoimmune disease, arthritis is just one symptom. Everyone associates the word with osteo too which is why we get all the silly remarks 🙄sorry preaching to the choir I know x

4 likes
Reply
Pippy25
Pippy25
in reply to AgedCrone

Yes the word arthritis always brings us back full circle to Auntie Ethel or Mr. Bloggs with a spot of arthritis/ rheumatics and once they'd had a cuppa, a sit down and maybe a few paracetamol they are as right as reign! If only it were so simple :-)

2 likes
Reply
Carol41
Carol41
in reply to Mmrr

My mother told me that I must have been wicked in a former life so have to suffer for it now.

Reply
Pat9442

Maybe we should all begin a campaign to call this horrid illness RD. Maybe then we would not hear about Grandma and Aunt Ethel so much!

Come on fellow sufferers, let’s get the ball rolling on this site

9 likes
Reply
Mmrr
Mmrr
in reply to Pat9442

I use RD rather than RA. Most folks don't know what it is, so it stops much of the comments. But yes a change of name would help, I believe.

1 like
Reply
Shalf
Shalf
in reply to Mmrr

Maybe start with n-r-A-s

1 like
Reply
Dobcross1
Dobcross1
in reply to Pat9442

Totally agree!

4 likes
Reply
Campaigner
Campaigner
in reply to Pat9442

I could not agree more that we should refer to our conditions Rheumatoid Disease. It help stop the association with arthritis.

1 like
Reply
Pippy25
Pippy25
in reply to Campaigner

I will try and use RD more often. However my rhuemy instead of saying I have RD and Lupus calls it Auto immune overlap!

Reply
nomoreheels
nomoreheels
in reply to Pat9442

Many of us have been using RD for years, 5 years or so healthunlocked.com/nras/pos...

2 likes
Reply
BonnieG123

Hugs and understanding. I think my family has always viewed me as a hypochondriac and all these years later, they still don’t get it.

3 likes
Reply
Pippy25
Pippy25
in reply to BonnieG123

Totally agree.

2 likes
Reply
J1707

I agree with everything. My dad thinks if you just plow on you will over come it. His favourite saying is just shake your feathers 🤬🤬🤬🤬🤯🤯🤯😡. I have plowed on and ended up in A&E my mind is willing but my body says NO NO NO!!!!!

2 likes
Reply
Pippy25
Pippy25
in reply to J1707

I must be a bald eagle then, as my feathers fell off a few weeks ago and I too ended up in A &E with vertigo and was dehydrated because I've been ploughing on for years. My body decided to come to a grinding halt.

3 likes
Reply
BonnieG123
BonnieG123
in reply to Pippy25

Sorry to hear that.

Reply
Pippy25
Pippy25
in reply to BonnieG123

Thanks BonnieG123.

Reply
BonnieG123
BonnieG123
in reply to Pippy25

Only we can understand what grinding halt really means.

1 like
Reply
BonnieG123
BonnieG123
in reply to J1707

They don’t understand that we can’t shake.

1 like
Reply
Pippy25
Pippy25
in reply to BonnieG123

I may be barking up the wrong tree here but I wonder if one of the reasons our parents expect us to plough on, shake and carry on as before we had RD is that they cannot or do not understand or accept that as grown up as we are, that their child may be sicker than they are. So how can you be fatigued, struggle to walk, can do things one day (or minute) and not the next. Afterall you got over that nasty bout of chickenpox when you were five and were dashing round within days!I'm sure there are some parents who may understand and get it, but sadly some don't.

3 likes
Reply
J1707
J1707
in reply to Pippy25

I don’t think that’s right for all parents . My father is just blinkered. No one suffers like him he expects everyone just to run around him while he just sits there. Ahhh he’s eighty can’t help it..... no my mum had breast cancer then throat cancer with in 6 weeks life changing surgery no voice my dad had no patience with her . 11 years after her ops she was was still struggling to carry tea and toast up the stairs every morning for him. He never cooked did the washing or shopping she did or me and my siblings. My mother use to say he just can’t help it. She just needed to shake her feathers my dad said. I can’t look after him like I did my mom my health doesn’t let me . My sister shoulders most of the responsibility. ( massive guilt) I do what I can out of duty for my mom it was out of love .

Very deep and maudlin this morning feeling grumpy 🙄☹️

Reply
Pippy25
Pippy25
in reply to J1707

No I totally agree not all parents think that way, but I just wonder if some parents dont, can't or wont understand or accept what RD is all about. I've shook my feathers for so long now, like I said they fell off the other week, but this seems to have been forgotten now. Don't worry J1707 we are allowed to feel the way we do, but am sending some warm wishes to you. Take care

Reply
J1707
J1707
in reply to Pippy25

Thanks .. have a good day

1 like
Reply
BonnieG123
BonnieG123
in reply to Pippy25

I think that’s a close explanation.

1 like
Reply
Pippy25
Pippy25
in reply to BonnieG123

How I am feeling always falls on deaf ears, a sort of you've had your 'moment' of not feeling well and like other illnesses that perhaps follow a course such as flu or cold where usually (and I realise it may not always be the case) you recover from. I feel that's how I am expected to pick myself up, dust myself off and off we go again. Normal service resumed. So I guess if I can't get my family to understand or accept RD it's not going to be an easy feat trying to get people in general to understand. Although I wont give up. :-)

1 like
Reply
BonnieG123
BonnieG123
in reply to Pippy25

Agree!

Reply
rab1874

You hit the nail on the head word for word 😜👍

1 like
Reply
Tillie20

Hi I agree with everything you have said X

1 like
Reply
Hamie

I get so frustrated, my partner of 14 years is 11 years older than me asked me today "what happened to his mother's generation, they never got pills just shut up and put up!"

I replied fine I will stop pills we won't be able to do anything as I will be too sore. My friends don't understand now I'm on mxt need be careful what I drink, they just don't get it at all. I'm sure none of us choose to live our lives this way, we we are all making the most as best we can,. I'm a nurse and ashamed to say never appreciated the problems inflammatory / auto immune conditions can cause till I joined the club. Much more education all round is needed. Rant over .

3 likes
Reply
Pippy25
Pippy25
in reply to Hamie

I agree positive, relevant, appropriate, constructive education on RD in it's own right is what is needed. Take care

2 likes
Reply
J1707
J1707
in reply to Hamie

Shut up and put up was a mantra. Unfortunately manly women who always had it hard and no choice.Yes we now have pills because we live longer

2 likes
Reply
Pippy25
Pippy25
in reply to J1707

Different times, different attitudes I guess with no doubt little medical research or many pills available.

1 like
Reply
Creakywrists

I agree it’s needed, but in my world saying I’ve got ‘wonky joints’ seems to work better !

1 like
Reply
Pippy25

Always helpful to know how others make it work for them Creakywrists. Take care

1 like
Reply
Carol41

I agree with you absolutely. Life is such a struggle in many different ways.

Reply
Pippy25
Pippy25
in reply to Carol41

Yes our lives are not exactly how we thought they would be I'm sure, however we do our best with what we have and should be proud. It's nice to know there are people all supporting each other here. Best Wishes to you.

1 like
Reply
Hamie

Yes Pippy25 and everyone else who has replied, this site is so supportive, it's great to have people who just understand .warm wishes to you all .

1 like
Reply

You may also like...