Just tired

[MissTinMan]

I’m tired of the words ‘I’m fine’ I’ve used it too often. I think ‘tired’ is a better word. I guess I’m just tired of having to adjust to this new body. I think I can cope with pain but I’m tired of loosing function. I miss the old me.

[Ali_H]

Hi MissTinMan,

You are definitely not alone with that one... living with a life long debilitating condition (or 3) is proving to be the most demanding job I’ve ever taken on... I don’t even remember applying for the darn post and apparently it’s not very easy to resign from it either!!!

Take your rest and courage where you can when you can. Things that have helped me ‘find heart’ are talking on here, reading posts. Letting friends and family know (plus leaving a few RA booklets around so they can pick them up and read if curious - helped others to understand the fatigue issue far better than I could explain it! You can get them free from the NRAS and urge you to have a look at what’s available).

Taking more gentle exercise - strolling, swimming. Speaking to a professional counsellor- GP can do a referral if that’s something you want but there will be a waiting list! Here there is also a self referral system called ‘Let’s Talk Wellbeing’ which may also be in your area.

Meditation has helped and I’ve enjoyed weekends (+longer) at courses focusing on how to meditate- very helpful and there are some reasonably priced ones out there. PS you don’t have to sit cross legged on a mat to meditate- a chair is fine.

I don’t think I’ll ever find my Emerald City and get back home to the pre RA me and in some ways that’s OK cos the journey so far has taught me loads and I’ve grown because of it.

I hope you find some good support plus rewarding rest stops on your own RA path and find heart as you go along.

All the best

Ali

[Soundofmusic52]

I feel exactly the same I do small things housework then I have to rest I walk then I have to rest the hardest is adjusting to a new you 😫

[Shalf in reply to Soundofmusic52]

Ditto!

[Ruth12345]

The above two replies are so true. You are not on your own and learning to be the best new you is a life long challenge, but worth it. I'm not thete yet at all. I still miss the old me, but am learning about the new me and what that means. Be kind to yourself, you are precious and important.

This forum is very helpfull and supportive, so use it to do that and other things. I wish you all the best.

[Hidden]

Your not alone as you can see from the responses. I can’t add anymore as they have collectively said it all. There are better days that I make the most of.

[Pippy25]

Same as all have said. Sending you some supportive wishes.

[CatAngel]

I always say "I'm fine, just tired". In truth I am beyond exhausted. It just sucks 🤦‍♀️ x

[Hidden in reply to CatAngel]

Same!!!

[orange33]

Hello

Yes I know how you feel. I miss my old self dreadfully and do wonder why?this condition kicked in.

I'm sending healing thoughts to you and a hug.

[Shalf]

I say 'I'm fine' too when really I am not fine. I feel outside of this forum, most people wouldn't or don't understand the reasons for not being fine so I guess it's simply an easy opt out of a potential frustrating conversation.

Take comfort on here. Don't know where we would all be without it. x

[oldtimer]

I don't tell people 'I'm fine' - it isn't true and stops the more helpful people from helping.

I usually say something like 'As well as can be expected' - that gives an opening for anyone who wants to know more to ask, but enough for people to know that I'm not 'fine' and make allowances.

[Shalf in reply to oldtimer]

In my experience it depends who is asking 'how are you?'

There are numerous I will say 'I'm fine' to because I have heard their replies before! A few I will open up to but not many for good reason.

[GranAmie]

I stopped saying 'fine' to anything anyone ... after some of my mature students years ago told me FINE really means F****ed, Insecure, Neurotic and Exhausted. [hope no-one is offended, it still makes me smile.

I tend to say ' managing it, touch wood / so far' altho' on bad days I do tend to forget convention ... and really tell 'em :))

[Shalf in reply to GranAmie]

Funny! 😂

[Hidden in reply to GranAmie]

I like your version of fine 😂😂😂

[Vanwife]

You’ve explained this perfectly, thank you.

I miss the old me and struggle to even “like” the new me.

I pray you find some normality in this vicious world of pain and meds x

[rab1874]

It sure is this disease knows how to test us daily,I used to fight it but not now,I just do a wee bit then rest xxx

[GranAmie in reply to rab1874]

well done Rab - you're learning to pace yourself: one of the hardest lessons to learn! [ don't mean to sound patronising... once a teacher always ... etc]. xx

[Hidden]

Where Did I Go?

*

Once I was human

a long time ago,

Someone with strength

and get up and go

*

That person has vanished

I don't know where to,

I just cannot find her

Please, where did I go?

*

My life is such sadness

to think of my past

the girl I once was

but that didn't last.

*

I look in the mirror,

and I no longer know

Just who I am,

Oh where did I go?

*

One day I'll come back,

but be different somehow,

be stronger, be bolder

be calm and I vow

*

I won't make a mess

of my new life, oh no,

but just tell me please,

where did I go?

*

I won't give in to pity

or pass on the blame

for all my mistakes

that was me, just the same.

*

I'll keep going forward

move on, so you know

as long as I find out

just where I did go.

[Shalf in reply to Hidden]

Brilliant yet again 🥰 Where did I go? Me, Suzie 😳., Especially when I look at photos of me not so long ago hiking the hills backpack on with full bottles of water for the dogs. Up at 6am for yoga practice, totally awake and motivated. Where DID I go? 😥

[Hidden in reply to Shalf]

Half way around the world with all that hiking Shalf. You will have made some wonderful memories. 🤗

[AgedCrone]

I think most long-term RA sufferers feel the same..... but the trick is not to let it beat you. Look after yourself, eat well, do things you like, socialise with friends who understand ......but don’t just give up....even when every joint in your body is on fire.

Listen to your rheumatologist and your rheumy nurse.....they really are your friends even though they make you take drugs you feel you don’t want to take & often make you feel rotten.....but give them a chance.

If you don’t try everything you are offered you will never know if it would’ve helped.

There will be days when you just can’t smile but there’s always tomorrow and we must believe it will be better than today.

I know...... PollyAnna lives...but we’ve got to get through it somehow...so we might as well get started now! 🌸

[KittyJ in reply to AgedCrone]

Too true AC 😊