Warning; On a bit of a rant! Sorry x

stephiey

I am going to apologise now for anyone who is about to read this! I guess I just need a bit of guidance.

It's been a long time since I've been on here, I think I was about 19. I turned 21 in July and since then I've been trying, really trying, to get myself back together. Long story short, I've had JIA since I was 4 & after my shoulder surgery I pretty much secluded myself.
I have just become so angry and moody & all I do is worry!
I know you are all feeling the same as me sometimes and it's reassuring to know I'm not technically alone. But I feel so alone.
Noone really understands, my Mum is amazing but I feel bad talking to her about how I'm struggling with my life because I just want her to be proud of me. I've tried talking to a counsellor at uni but I can't even open up to her so she can't really help me. I feel like this is the safest place for me to vent because I know you won't judge me too much for being miserable!

How do you all cope? What kinds of things do you do to unwind & relax? I feel so tense all the time and my only outlet is my uni work & that's sometimes stressful! Anything you do like exercises, meditation anything. I am so ready to try everything!

Thank you so much if you read all of this!
Stephanie X

frogmorton

Hi Stephanie

It is lovely to see your name again

Gosh I am not surprised you feel so stressed.

I have arthritis myself, but my eldest will be starting University almost any day now and I can promise you I am enormously proud of her, but would want her to vent to me if she needed to. Us Mums want our 'kids' to be happy, of course successful, but happy most of all. So if you want to bawl on her shoulder go ahead - she won't feel you have let her down at all.

Two years ago I went to one of the arthritis care 'Living with your long term condition' courses. It really helped me. We did things like guided imigiary, distraction techniques, etc as well as mixing with others in the same position. It - together with the counselling at university might help you to open up?

Have you thought about going to an arthritis care group?? There has to be one in London for 'younger' people it's densely enough populated. Immediately you will feel less isolated.

Of course there is always the helplines here (number top right hand corner of the page), I have phoned them myself in the past and found the support fantastic.

and don't forget the young person's forum on here which can be quiet I know, but today there is a new lass, newly diagnosed and 19....

Please take care Stephanie

Love and ((()))

Toni xxx

Toots

Hi Stephanie x

I'm new around here but am already understanding the whole 'don't want to feel like I'm constantly moaning to my nearest and dearest' issue. I am so sorry you feel so lonely.

Perhaps as Frogmorton suggested, a local group might be helpful. You can check so see the details of where and when they meet on this page:

http://www.arthritiscare.org.uk/InyourArea/@2932/Branches

Of course, as I am finding out, there are a lovely bunch of people here on the forum, and they always seem to have the patience to listen to our grumbles ;-)

suzygirl

Hi, you have come to the right place to vent! We all understand. I recently went on a course for people with long term conditions. The thing that was stressed the most was a hobby, something that takes your mind off the pain and relaxes you. Something you enjoy and do just for you.

I love to read, it eases my anxiety and takes my mind off things. I also burn essential oils in an oil burner as they relax me. I take short walks when able and try to eat well. I have just invested in a load of kitchen gadgets to enable me to enjoy cooking again. I find it enjoyable and helps me to feel useful again.

You are doing so well going to uni and I know your mom will be very proud of you. She would understand you explaining how you feel. Us mom's would always rather know than not know. It is important to have someone who listens and validates our feelings rather than dismissing them. Not everyone can handle talking about long term illness, I have found, they tend to brush it off. That is why forums, helplines and support groups are so important, they are filled with people who understand. You can swap tips and support each other.

Take care

stickywicket

No apology needed, Stephanie. It's what we're here for.

I think the most important thing I'd like to do is just to convince you how much you have achieved already. To have had JIA since you were four and still got to uni is quite something. I'm sure your Mum is proud of you. I know I would be.

I guess we're all alone with this disease to a greater or lesser extent as, although it impacts – sometimes greatly – on those around us, their problems with it are different from ours. I don't expect most people to really have a clue what things are like for me and I certainly don't want to be bleating on about arthritis all the time. If I find it boring, they must too. However, we all have an inbuilt need not to be alone with stuff, especially the stuff that hurts. It's possible that you feel unable to talk to your counsellor because she is not the right person for you to open up to. We all gel with some better than others. Have you tried ringing the AC Helplines? At least they would start with a basic grasp of how things are for you.

How do I cope? I think two things are vital. Firstly, we all need someone, somewhere, with whom we can just be ourselves without fear of misunderstanding or censorship. It might be a friend or a professional. Secondly, I think we all need something that takes us, temporarily, right out of ourselves. For me it's cricket. (Watching, alas, not playing ) For others it will be a wide variety of things – other sports, reading, doing puzzles etc etc. And, for the third of these 'two things' :roll: I think it helps to be able to help others in whatever capacity we can. Charities are always crying out for volunteers in a wide variety of fields. It makes us feel we are pulling our weight rather than just being a drag on others.

We are not judging you, Stephanie. If it helps to write stuff down on here then go ahead. We're listening.

Islaydoc

Hi, I know just how difficult living with this is, it wrecked my marriage but I now have my PhD and I am working in Qatar, it is a struggle when nobody understands the problems but you can do it you just have to be a bit selfish about yourself.
Best wishes
Brian

stephiey

Thank you all so much. Im so emotional right now and after reading all your kind words I feel a bit teary eyed!
It's nice to know I can always come here for advice, I felt a bit more confident when I first started talking to people on here. I will definitely have another go talking to the counsellor at uni. I eill also try the advice line as I think it's easier for me to talk about things without people looking at me cos i just breakdown!
Thank you all again.
You really have no idea how much you've given me! X

stickywicket

That's very good news. I hope you'll get some good results. You are tackling this head on and we all have to find methods that suit us so, if a telephone is right for you then do try the Helpline. I wish you every success, stephiey.

frogmorton

stephiey wrote:

Thank you all so much. Im so emotional right now and after reading all your kind words I feel a bit teary eyed!
It's nice to know I can always come here for advice, I felt a bit more confident when I first started talking to people on here. I will definitely have another go talking to the counsellor at uni. I eill also try the advice line as I think it's easier for me to talk about things without people looking at me cos i just breakdown!
Thank you all again.
You really have no idea how much you've given me! X

Stephanie - we do

I bawled every day all day the first week I joined here over every single post people wrote to me. Oh the relief!! I also bawled when I rang the helplines the first time I rang :oops: They just waited and I promised to ring back which I did.

Take care and keep talking!!


Love

Toni xxx