Lack of understanding from family

remixmum

I am sorry to put this on all of my arthur friends online, but some things have happened that have proved that my family, really dont understand what happens with RA

I have had my Mum on at me at the weekend over a few different things.
Firstly why I was still asleep at 11.30 on Saturday morning.. Erm I was in pain and couldnt sleep till 6.30

Then she wanted to go shopping with me today and I said Monday would be better as I dont go anywhere on Tuesday or Wednesday cos of the methotrexate.

So she collected me at 1pm yesterday and said that she was a bit fed up because whenever she wants to do something I cant, because I have a doctors/hospital appointment or a blood test or cant leave cos of taking my meth.

Okay I can see where she is coming from, but I am not doing this for fun, so I explained that the meth has an explosive side effect, :oops: and this is why I dont go out the day after taking it (In fact I had to resign from a committee I was on because the meetings were on a Wednesday)

She totally poo-poohed (sorry, I couldnt resist ) and told me that it was ridiculous, that drugs dont do that.

I think that the only way she will learn is when I go away with her in August and she will then realise what happens everyday.

By God though I will need a holiday to recover from 2 weeks with her
:eek:

valval

they just do not get the mental adjustments we have to make and the pain and stiffness life is not easy my mum tends to go to far the other way wanting to do every thing for me when i need to keep moving i go by the use it or loose it train of thought she will understand eventually or you will have to be firm with her val

traluvie

Hi Geri..

I think it is very hard for others to understand especially when they are not with you daily..
I reckon your mom will come to notice when you are on holiday together.. and hopefully she will be more understanding..
As Val said i do think you need to be firm with her though..You need her support.. I hope it all works out for you.. then you can plan things together then..xx

Poppyg1rl

Hi Geri,
Can I make a suggestion re your Mums attitude to your RA? Bring her with you to a Rheumy or Rheumy nurse appointment AND make a point of getting them to explain that methotrexate is chemotherapy and what the potential side affects can be. I'm lucky, I have a very supportive and understanding family & friends, my best friend came with me today for my first methotrexate injection (been on meth tablets for 19 mths but not tolerating them now) and she was quite alarmed and upset with what she saw and heard, she said she never realised it was chemotherapy and asked how on earth I coped with it? That might be what your mum needs to hear. Sending you love and supportive hugs (((((()))))) xxx

nanasue

Hi Geri, sorry to hear you are having problems, I think a lot of us go through this, I know I did. One of my daughters was ok from the start the other has only in the last year been able to understand ( I was diagnosed 6 years ago), also my husband who has ankylosing spondylitis and other joint problems was less than sympathetic, he thought because he only gets pain it was the same for me (Sorry, meant to say I have RA also OA and fibro) he didn't understand all the other symptoms you get with RA and fibro, he's better now after I was very ill last year, but he still doesn't really get it. You will have to keep plugging away, reiterating it and hopefully they will start to realise, but sadly some people never do, at least all of us here understand, I know that's not the same as wanting your family to be there for you , but it's a big help and a lifeline to a lot of us, we're always here with advice and support. I hope things improve for you.

Sue x

hileena111

Hi Geri
A lot of people have this problem......I think its a brilliant idea ....if you can get your mum to go to the rheumy nurse th next time
What about the Arthritis publications......is there anything in one of those.....like the medication one or any of the publications????
I'll have a look through my books and see if there is anything worth giving her to read Good luck and if she doesnt realise it before she will realise it when you are on holiday

Love
Hileena

julie47

Hi geri

I was also goint to suggest that your mum comes to your next rhummy appointment. Also that you should collect or download some booklets explaining this terrible disease.

I know it must be hard for your mum to understand and she may be quite shocked and upset by what she sees when you go on holiday.

I really do hope that arthur is good to you for your holiday and that you and your mum have a good time. (just remember to pace yourself and rest when you can)

take care juliepf x

stickywicket

You've got some good suggestions there, Geri, especially that of taking your Mum with you.

It's hard for our nearest and dearest to understand this disease and she may actually be in denial to some extent. I'm not sure AC do a booklet for relatives but just one for patients might help her understand. Hope so.

parrotman

As others have said do take a family member with you. My OH, bless her cotton socks, thought it all in my mind for several months even though she had come with me to the hospital. It was'nt until they put me onto a DMARD did the realisation kick in.

It's bad enough for us having to come to terms with ra which can take some time as well. Guess it's the same for our nearest & dearest.

Don't despair, you're not alone.

Regards John

frogmorton

Oh poor Geri :sad:

Mum's can be odd-uns you know....

they seem to almost be in denial about their adult children's ill-health...you are so not the first.

I think there are several reasons why this might be the case:

1. they might feel somehow responsible/guilty (my Mum did this one)

2. they were hoping 'we' would be looking after them!!!!

3. ignorance (download the info on MTX for her and tell her it's chemotherapy drug)

and probably other stuff l can't imagine...

I do not envy you your holiday, but hope it has some positive results for you

Hugs

Toni xx

keith1971

I think I'm lucky in that my parents actually listen to what I tell them. Of course it doesn't stop them from saying silly things like 'you need to do some stretching, that will sort it out'!

I gave them all the info I could find on my type of arthritis (PsA) and also on the different types of drugs.

I think they pretty much know the score now & even though they do say annoying things sometimes they're just worried and trying to help.

My wife is fantastic and refuses to believe anything other than I'll be okay and the drugs will eventually work & we'll all live happily ever after......despite me whinging on like Victor Meldrew about her eventually having to push me around in a wheelchair :roll:

It must be tough to go through all this bull*@$* without having someone to lean on (in more ways than one!).

And if the worst does happen at least I'm grateful that I managed to live it up in the worst possible ways when I had the chance!!! Also that I was able to travel a lot & see the world.
x

constable

Hi there

I agree with all really. Your mum will see how you really are on Holiday. And may I say how brave you are going with your mum. Also to take her with you to your next appointment.

Sometimes loved ones do refuse to accept what's wrong purely because they know there is something wrong but do not want to accept.

My hubby was born with RA, so he knows all about arthritis. It was me saying that I just had aches and pains but he knew better and he got me to the doctors. Now I know different.

She will learn, give her time.


Karen xx

remixmum

Thank you to all my wise friends

I have a "complicated" relationship (Dont we all :roll: ) with my mum probably due to the fact that I am the youngest of 4, and at 46, in her eyes, I am still only 11.

I allow this up to a point, then I blow up at her because she is very rigid in her views and sometimes that is the only way to get her to acknowledge things.

I know we are kind of responsible for her not seeing how bad I can be, because we have a finely tuned routine, such as I put on the kettle and the boys will grab it when its boiled and make tea, or when we are having dinner the boys will serve it and make sure that i have the smaller pieces of meat.

I go on holiday with her every year because I am the only one who is free to do this,and otherwise she would not get to go back to her hometown.

To this end, I have made a couple of decisions on my dilemma

Firstly I will see how momma is on holiday and if she still does not comprehend how things are, I will have to force her to acknowledge the situation.

Secondly, if that doesnt work I shall take her to see the rheumy nurse at the hospital when we get back.

Please dont think ill of me, I do love my mum and speak to her daily, but she can be a right stubborn old mule at times

constable

No-one thinks ill of you. Of course you love your mum, that goes without question.
I loved my mum but I could not live with her. So, your the baby of the family. Maybe you should get one of your brothers-sisters to have a talk with her as well.


Karen xx

Ankyspond

Hi,

Sorry you are not getting the support you NEED, lets be honest no matter how good families or friends are nobody really understands what we all go through. My mum knows about my AS, I think she understands but doesn't want to acknowledge it because of guilt (not true), fear, ostrich syndrome (head in sand will go away) so maybe its a mum thing. If I talk about anything to do with it she just completley ignores it, frusterating but her way of dealing with it I suppose! Sounds a bit like your mum, think they like to jolly you along thinking it will get better. I really hope you get on ok on holiday with her and she will see how hard things can be, you are very brave!!!!!!

I agree that taking her to a rhumy appointment is a great idea, last year my then 14 year old daughter had a bit of a breakdown about my AS. She was scared I was going to end up in a wheelchair, she is going to get it, frightened I can't do stuff, angry, frusterated etc so I wrote to my consultant and asked if I could bring her to the next appointment and if she would have a word. I didn't want her to lie to her or white wash over it but be truthful and thats what she did it was fantastic, then one of the OTs spoke to Amy as well and since then she has been so much better.

Hope you enjoy your holiday, thinking of you. x

stickywicket

No way do we 'think ill of you', Geri.

It may be that, without your sons around to give an unobtrusive hand, she will become more aware of how things really are for you when you're away together but, if not, I think you have a good plan in place and you know we're all behind you. Best of luck.