How do I find myself again?

WaitingPhoenix

Ive had RA for 18 months now and it's been a rollercoaster journey, i lost my job, got a new one, tried to stay active and was unable to. Ive sometimes felt optimistic but mostly have felt desperate. The last couple of weeks have been so tough, I'm struggling to work but hated being out of work. I can't do any of the things I love to do. I feel like I've lost myself and I mourn so deeply for me. I can't come to terms with this new existence. I can't find peace. I feel so frustrated at times but the last couple of weeks I have felt hopeless. Ive always been somebody who can cheer myself up but I just can't do it this time. I'm sleepwalking through life and it's a miserable existence. How do i find my joie de vivre again? I know I can still have a good life, at least my head knows it but my heart just doesn't get it and I feel lost. I seem to have given up but don't know how to hope again or how to change. What can I do to make it through to the other side? Is there another way?

[Deleted User]

Hi WaitingPhoenix, my name is Emma and I am a moderator here so welcome to Arthritis Care forums. As mods we are here to help with any problems you may have using the forums.

I went through something similar to you when I was first diagnosed with RA in my 20's. I've had it for years now and life can still be difficult but instead of trying to separate it from who I am, I accept it as part of me. You will find your way through this and there are many lovely people who use the forums with a wide range of experiences. Have a good look through the different forums and pick the ones you feel are best for the information you seek.

Here is our factsheet on RA, https://www.arthritiscare.org.uk/do-i-have-arthritis/a-z-of-types/65-rheumatoid-arthritis. I hope the factsheet helps but, if you need more specific information, you can always contact our Helpline at: https://www.arthritiscare.org.uk/help-and-support/helpline

I wish you all the best,

ModEm

stickywicket

Oh yes! There are plenty of other ways and, eventually, you will find the one that's right for you. But first be gentle with yourself. Your life has changed. This is a big thing and no mistake. There's no glossing over a diagnosis of RA. There's no giving yourself a good shake or a kick up the rear. (Well, definitely not the latter with arthritic joints )

You sound like someone who will always pick yourself up and crack on with things. That's good and really will be of the utmost use later. But, right now you need to mourn what is lost. Acknowledge it (which you are doing by posting here) and stop trying so hard to be cheerful.

Just be you. Because you are still you. The RA is just something you have (that clings on to you like a permanently wet blanket) but it's not who you are.

I don't know what things you've had to let go of. I remember, many many years ago, when I stopped being able to play the piano because my fingers just wouldn't stretch to the right notes. That really hurt because the piano was an old friend and consoler. It was only about 30 years later, when my son was doing O-level music, I decided I really fancied composition so I did a very enjoyable OU course in it. Things aren't always lost. Sometimes they just go into hibernation and then reappear looking different but equally fascinating.

Mostly, since then, whenever I've had to give something up I've taken on something new. I was about 45 years, two new knees and a new hip, in to RA when I took up horse riding for the first time in my life. OK, only RDA, but a fun challenge and lots of achievements. To keep on achieving is a great way of feeling good and, let's face it, life is not short on potential achievements when one has RA. Sometimes, just getting out of bed can be a massive achievement. We need to give ourselves a pat on the back (Ooops, yes, there I go again ) and acknowledge our determination and perseverance before tackling any more hurdles. It's often purely the effort that counts.

My life is not your life. I don't know what meds you're on (meth and hydroxy for me) or how much pain you're in. But I promise you there is good life after diagnosis. Our joints are not very flexible so our minds have to be all the more adaptable to make up for that. Try not to cling to the old. Look for the new. But first, be kind and gentle with yourself for as long as you need to be. We will be here to support you all the way.

dreamdaisy

Hello, I am so sorry that we have had to meet due to disease but that is the way of things on here.

I have no doubt that the sentiments so movingly expressed in your post are very familiar to many on here, and would be to the thousands who are not. There are many things in my pre-arthritic life that I miss but, unlike you, I have had time to come to terms with them: I am in my 21st year of living with this malarkey so not a novice. Naturally there are times when I need to reflect on what I have physically lost, on the things I have had to change to make my life easier to live, to deal with the natural resentment that so many of my peer group are living life as they always have and the general impact of arthritis in my life and that of my husband but - and this is true - the essential me remains. There's no doubt I am physically altered but the essential me is still there: yes, I lose sight of me every now and again but I ensure I return. There is more to me than my disease but learning that takes time - well, it has for me.

It is hard to know what the right words are but I say don't be afraid to grieve for what was, don't be afraid to be sad, don't be afraid of the anger, fear and resentment which arthritis happily dangles before you because I have no doubt you are far more than your disease. Life has its tunnels and I suspect you are currently within one of the darker and longer ones when it is so easy to lose sight of everything.

In my darkest moments I remember the words of Khalil Gibran: The deeper sorrow carves into your being the more joy you can contain. I know that to be true. DD

Slosh

I can't comment in respect of RA, I have OA plus some other problems but I can with your feelings about loosing yourself.
My initial diagnosis was 4 yrs ago and was a shock. Along the way I lost aspects of me, I had to give up my craft of patchwork, lost my ability to sing after surgery which meant I could no longer sing in a choir, had to change my job and go part-time (but in the same school), my friendships and relationships changed and now I have come to the reluctant decision that I need to stop work and apply for early retirement.
BUT, and this is important, I have found me again and even some new opportunities.
I had some counselling and this was really helpful. One very useful thing I was told about was the Five Stages of Grief,
1, Denial and isolation, 2, Anger, 3, Bargaining, 4, Depression, 5, Acceptance.
I found this helpful especially with the idea of this being an on-going process, and that even when you have reached acceptance there are times when you dip back into the earlier stages and that it is OK to mourn what you have lost.

However it's not all negative, I have made new friends and value my true friends who have stayed with me, and while it was hard to give up one craft I found a new one and have a fledgling jewellery business which has won a couple of online business awards and will soon be stocked in a local museum. I still get frustrated because of my limitations but 3-4 yrs ago when things seemed so hopeless and I felt lost I would never have believed this. It's not been easy but the support of people on this forum has been invaluable.

So be gentle on yourself, mourn for what you have lost, get angry and swear, talk to us on here and also to your GP.

dibdab

How your thoughts resonate, it is indeed a little like mourning for what's lost in the process of this disease. I'm 10 years in to life with RA, and I can't lie, it's been a wrench to lose some things that I really enjoyed......not least a teaching career of 30 years, but life moves on.

Like others have said, give yourself time and permission to grieve, but try not to focus on all the negatives, life inevitably changes even without RA, but there will always be new adventures to try as Slosh said. I would encourage you to talk and talk and talk some more.....this site is invaluable in that you'll have folks who understand and won't try to give you good advice from a point of absolute ignorance.

Maybe look for new things to do that are less physically demanding....I have been very aware that I need more exercise and have taken to walking the dog for around 45 minutes 4 or 5 times a week. This last 2 weeks I've discovered an exercise group with modified gym equipment and have now had 3 hour long sessions which have left me tired, sweaty but feeling like I've achieved something....the little things matter in our sense of self-identity and well being. I've had to stop knitting because my fingers are too knobbly and sore, but have begun to learn to crochet which is less demanding on my hands and gives me a sense of satisfaction when I can see something new that I created and gives pleasures to those who receive the blankets as gifts.

I would encourage you to be honest with your nearest and dearest about the things you struggle with, and accept help when it's offered. I know that my family want to help, and are often frustrated when I insist on struggling with stuff independently.

Deb x

stickywicket

Hello again. How are you doing? I've been thinking of you.

Starburst

Hello WaitingPhoenix

Welcome to our supportive little corner on the web. Sorry we meet under these circumstances, especially as you are struggling with all that you have to face.

Just to reassure you, what you are feeling is completely normal and you are not alone. I hear your pain and sadness and wish there was something more I could do or say.

When I was diagnosed with RA, I cycled through every emotion and when I thought I was finished, I went through them again. I think, perhaps you don't ever go back to the old you but you learn to create a new you. I don't see this as a bad thing. In many ways, I am far happier with the me that greets the world than I ever was back then. This has been a work in progress though.

Something that helped me was setting realistic goals based on how I am at the time. Don't look back on what you could do but on what you can do now. There is so much, I'm sure, that you are able to do. Finding new joys and happinesness in life are really important. Please don't think I am belittling what you have lost. It's natural to feel sadness, anger and grief. I still feel this and I let myself feel the feelings without holding on to them.

We are here to support you. Don't be alone.
Take care.

bubbadog

Hi Emma, I felt just like you when I first realised my life would never be the same and would only get worse. But to be honest it was finding this site that saved me!! What I had to do was re-access my life. I had to look at what I could still do that I enjoyed and find new things I could do enjoy. Yes I still get days that I'm depressed still like recently due to a bad flare up I'm suffering with. But I try and get passed it and carry on. You will need time to mourn the old you but look to a new you as well. Now you are on here you have a new family who are here to help you and answer any questions you have. Take care.

bitsinabag

Grab it back, uncover all the maybe`s that you can. RA is an affliction caused by one`s own immune system. You might not find the cause/trigger but is sure as hell worth looking for it. I get slated on this forum for advocating the recording of all the variables that exist day to day and checking if there is any corellation between how I feel and what I have done/eaten/taken. It is simple to do and puts yuo back in the driving seat. If the outcome is nothing then that of it`s self is a start point for the future.
It is much better than wandering about wondering `what if`.
Feeling better or worse some days than others is the way in. Record on 1 A4 so that review is straightforward. Days of the week along the top, foods /activities /drugs /stress levels, down the left. the common stuff becomes a tick in a box. Most importantly, on the bottom line how you feel 1 to 10 under each day. More of what makes you feel better, less of what makes you feel worse. Refine the sheet if there is a useful output home in on it (if any) It worked for me.
All the best

WaitingPhoenix

Hello everyone,

Thanks for your posts, they have encouraged me so much and it is good to know that life really can still be good, different but good. I have re-read your posts several times and they have given me some hope. I will think about new things to do and enjoy and think about what I can still do within my limitations.

I have had a better couple of days and the cloud has lifted for now. It seems that whenever my symptoms flare up I go into a depression and each time seems worse than the last. I can't seem to hold on to the fact that it will pass but I have started recording how I feel on my calendar so if (or when) I have another bad spell I can look back and see that bad spells do usually come to an end.

Thanks for being there xx

stickywicket

I'm pleased things are a little better. In my experience bad spells always come to an end even if the end has to be encouraged by meds, changes in lifestyle or whatever. But, when the pain is bad and we are lost in the middle of it, it's very hard to remember that. Please come back and talk to us whenever you feel that way. We do understand.

palo

This resonates so much with me, as with many many others I am sure.

The desperation in the face of unwanted change that is all encompassing is real and difficult, sometimes impossible to manage.

Yes, I too have been there, once or twice, and it can feel like drowning.

I think we all find strategies and ways to move forward, life changes, it always will, and we can fight it or try to manage it.

Throughout all of it you are always you- just not the you you used to be - richer in knowledge and experience, stronger and more determined..

What matters not is how many times you were knocked down - but that you got up again every time - sometimes it just takes a bit longer..

Good luck.

AnotherwithRA

I am 18 and have had RA since 2. In the recent past I had been pretty depressed over my worsening condition: my whole body hurt badly and all i could do was lay in bed. I could not take myself as i was. However, with time i learnt to simply embrace myself with my condition, rather than denying it because it actually was a reality which I couldn't escape. From then on, i am living life better by knowing myself and doing what i find pleasure in. Although my body still hurts and physically i have gone worse, but i still do what i love to the extent i can: i dance a little, read a lot, do arts and most of all find pleasure in smallest things. I have learnt to LIVE with RA. I am sure you can do it too! ✨

Prayers and best wishes! 🎈

[Deleted User]

Hi to "AnotherwithRA"

Welcome to the forum. What a lovely positive post. I am sure your post will encourage others with RA as well as other arthritis diagnosis that it is possible to adjust to the fact that you have been diagnosed with arthritis.

I am sure you will find support, advice, friendship and light relief on here.

I am one of the moderators and we all have one or more of arthritis "hangers on" or look after family with the same.

Best wishes
ChrisK

mig

Hi,You have had such good posts from the folk on here theres not much I can add but please do stick with us sometimes we are sad and depressed but sometimes we are funny and have a giggle but what we are all the time is supportive so stick with us .Love from Mig.

AnotherwithRA

Thank you ChrisK for welcoming me. I believe we can help each other no matter in the smallest way and make a difference even if slightest.

My best to all!

stickywicket

Hello AnotherwithRA and welcome aboard. Yo are absolutely right. We can always help a little just by 'listening', empathising and sharing.

I hope the depression will stay away. You sound to have made some very positive starts

WaitingPhoenix

Thanks for your posts and sharing your personal story with me. They really do bring me hope xx

AnotherwithRA

Thank you stickywicket. Positivity is all that keeps us going.