I've lost all hope.

stephiey

I haven't logged on here in a while, noone probably knows who I am so here's some brief information.
I'm 18, i've had JIA in all of my joints since i was around 4/5. was in remission from the ages of about 10-14. I am much better then i was when i was younger, from a wheelchair not being able to walk to taking part in fashion shows at college etc. but i think as ive got older, ive become more aware at what this is doing to me.

ive felt depressed for a while now and im too embarrased to admit it to my parents. theyre so supportive and i see how hurt they are when i break down crying and they don't know what to do. i have my friends who are always trying to keep me happy but no one understands. I had to re-do my first year at college because i spent so much time off in hospital. im in my last year now and things aren't so great. even though im doing good academically im still worried about potential university opportunities.

teachers ive spoke to are sure that my disability wont affect my chances of getting into my chosen course, but thats what they have to say right. im just scared for my future. im in so much pain all the time and nothing helps. even now, on top of the arthritis, im suffering from tendonitis and anxiety and even battled with a slight addiction to codeine last year. i know im not alone. but i just feel so lonely. i feel isolated.
sorry for the long rant. i have no idea what im expecting as a response so just seeing views would probably be a plus.
thanks for reading my moaning. sorry if i bored you half to sleep x

Wonkylegs

HI Stephiey

crikey, you have had it tough haven't you, and no wonder you feel low with all that you are coping with :shock: so please no apologies for needing a little rant ..... we all need them at times and this is the perfect place for them ..... we've all been there at some time or other and well understand the need

I can understand that you worry about hurting your parents if you told them how low you feel, but have you thought that by not telling them they may feel just as hurt? Mind you, at your age I didn't tell my parents stuff like that either :oops: :oops:

If you don't feel you can talk to your parents or your friends about how low you are feeling, perhaps you could confide in your GP if you get on with them well? They are the right people to help you through the depression that so often accompanies arthritis. I know ... because I battle with it myself, and there are lots of things that might help you .... which your GP could organise if you wished.

IF not, could you ring the Arthritis Care helplines people (number at the top right of ever page on this site - open weekdays 10am - 4pm) as they are all people with arthritis, and are very very helpful. They might be able to put you in contact with others of a similar age to support you at this tough time.

Please keep posting, as there are lots of people on here who will want to support you.

loads of hugs
WOnky

poppygirl

Hi Stephiey,
I've only recently been diagnosed with PA, I cannot begin to think of how I would cope with the pain, discomfort, loss of schooling and general interruption of normal life that you have dealt with. You are quite rightly feeling low, do your teachers at college know how u are feeling? Is there a counsellor that u could go to to get things off your chest? I'm a mum of teenagers myself and know sometimes it helps to talk to them instead of parents. That being said us mums&Dads are a pretty resilient bunch and even if it's to cry, shout, or just talk your fears and worries through it might help them so that they can help u, or get some help. Please don't think ur alone, the people on this forum are wonderful, kind and caring and I'm sure someone else far wiser than me can help and will be along soon. I think ur amazing to go through everything u have been through. It's this blasted disease!
Try to keep positive, talk to someone. Thinking of u and hope u have a good night. X

salamander

Hi Stephiey, nice to see you on here. Sorry you are having such a rough time. I know what you mean about feeling isolated, I do too. I think we probably all do at times. It's a very frustrating disease to have and even when people think they are helping sometimes it's not enough. Can you talk to your GP about feeling depressed if you can't talk to your parents? They don't have to know and you'll feel a lot better for talking about it and gp may be able to help. Also, what about ringing the helpline here? They may have some ideas to help you too.

Your teachers are right about your disability not affecting your chances to get on your chosen course. It might not be easy for you at times but it's up to the college to make things work for you. They have people in place for that. They need to accommodate you and I'm sure that will happen.

Try not to worry too much about the future. It's hard I know.
tc

skezier

Hi Stephie,

Its nice to see you here again but wish you were feeling a bit better.

Flower its been hard for you as you got it all so young its small wonder your feeling depressed about it all.

I know its hard to tell your parents but I honestly think it might help if you could, they have been supportive all the way so will be over how down you feel. Sometimes being able to talk helps and maybe they already know something isn't right with you? I don't know but would be surprised if they hadn't picked something up.

You could ring the helplines here as well or instead cus they are very good and do actually know a huge amount as well as just listening to you. this I do know cus I think most of us have ear bashed them at sometime or another.

What do you want to do at Uni Stephie? You should be able to do the course flower. A few people here have been through and hopefully some of those will post to you so you will know first hand they did it and got there.

You hang in there and hopefully you will be able to talk to someone about how your feeling and if it helps can you print your post out and show it them? I really hope it gets easier and I reckon you have a good future you know and so hope you feel better about it all soon. Cris x

angel1

Stephie, hello, you are a very brave young woman, and I can`t tell you how much your post impressed me. Do you know though, sometimes we can be a bit too brave, especially when not wanting to worry, or hurt, loved ones. I would be very surprised if your parents were not already aware that you are feeling low at the moment. Perhaps you do need to share your feelings with them. I can promise you that mums and dads much prefer to know what they are dealing with, rather than imagining lots of things.

Any eighteen year old facing final year exams, and then finding the right university, and the right course, will be feeling a great deal of pressure. Added to all of that, you have this rotten disease to contend with. Not knowing how it might affect what should be a great time in your life. I feel though that if you find the right people to talk to, who can give you some practical advice, it will help you face your fears. Do you have a teacher trained in Pastoral Care, at college? Or perhaps a Personal Tutor. Someone who can allay your worries regarding your disability, and being accepted at uni. I can promise you though, that it will not stop you from being accepted.

It would be a good idea for you to have a word with your GP, and see what help he/she can offer. Once you`ve spoken to your Mum, I`m sure she will want to go with you, to support you. Don`t shut her out Stephie.

Please keep in touch. I send you all the love in the world.......Ange.x.

dreamdaisy

Crying is a valuable release, if not essential. Very few people actually know what to do when they see someone in tears: in my experience it's best to let the crier alone, pass tissues, maybe cuddle them, but not bombard them with stupid questions - people do tho, don't they? They ask why the tears? Are you feeling down? Where does it hurt? etc etc etc . It's a pattern started in childhood I think. I found that made the crying much more difficult, so now I do that on my own sometimes. No interference, and I can scream into a pillow too - that helps. I did howl all over Mr DD last night, who serenely handed me his hanky and carried on watching Kevin McCloud. Wise man. (both Mr DD and Mr McC!)

I think, re the teachers, you have a good point. Of course they have to say that you can cope - in this day and age no-one is allowed to raise any doubts about anyone's ability to do anything. Are you worried that you may not be able to? That is a very different matter: it is you that is in your skin (and bloody uncomfortable skin it is too) not them. Only you can decide this, and you won't know until you start. Get yourself onto the course you want and see how things go. If it does prove to be too much at least you know that you tried - and that is a matter of pride, too. I know that there is much help available at college for disabled students - see the college thread on YP forum.

I am not surprised you cannot talk to your parents: most teenagers find that hard, let alone someone in your position and with your worries. Parents are there to raise the child, protect the child and sort things out for that child. Your arthritis is one thing they cannot sort out, so I expect they are feeling their own frustrations too - so try the helplines here or ring The Smaritans. Or come and talk to us. We all know what it can be like - I was lying there last night, trying to sleep but being denied by pain, and it dawned on me that, assuming the proverbial bus doesn't hit in the near future, I have at least another twenty years of this rubbish, and having gotten through the past fourteen years the struggle does not appeal.

This disease is unremitting and unrelenting. I do wish tho it had the decency to apply a cut-off point in its activities. To hit children in the way it does is so deeply offensive, you began so young and are still struggling - where is the decency in that? ******* arthritis. Keep in touch over the next few days please, just so we know how you are doing - good or bad. We will do out best to help. DD

wibberley

Hi Stephiey,

I'm so sorry to hear things are tough just now. Like you, I've had JIA from a young age (am now 44). I've found that quite a high level of stubborness helps a great deal. Obviously, having JIA rules out careers that involve quite physical work.....it also rules out gardening, which is nice for those of us without green fingers!

When I told my rheumy that we were trying for a family, he tried to talk me out of it. Well, he didn't manage to and I now have 3 wonderful kids aged 15, 12 and 10. All quite sporty as well! Not sure how that happened but I'm not complaining!

Things are definitely tough when the disease is active, but you've already had one period of remission, so try to look on the positive side and assume that it will happen again some time. Also, try not to let it take over your life - there are ways round most things and it sounds like you have very supportive tutors.

And..........you have the full support of this wonderful forum!

Lois x

tjt6768

stephiey wrote:

I haven't logged on here in a while, noone probably knows who I am so here's some brief information.
I'm 18, i've had JIA in all of my joints since i was around 4/5. was in remission from the ages of about 10-14. I am much better then i was when i was younger, from a wheelchair not being able to walk to taking part in fashion shows at college etc. but i think as ive got older, ive become more aware at what this is doing to me.

ive felt depressed for a while now and im too embarrased to admit it to my parents. theyre so supportive and i see how hurt they are when i break down crying and they don't know what to do. i have my friends who are always trying to keep me happy but no one understands. I had to re-do my first year at college because i spent so much time off in hospital. im in my last year now and things aren't so great. even though im doing good academically im still worried about potential university opportunities.

teachers ive spoke to are sure that my disability wont affect my chances of getting into my chosen course, but thats what they have to say right. im just scared for my future. im in so much pain all the time and nothing helps. even now, on top of the arthritis, im suffering from tendonitis and anxiety and even battled with a slight addiction to codeine last year. i know im not alone. but i just feel so lonely. i feel isolated.
sorry for the long rant. i have no idea what im expecting as a response so just seeing views would probably be a plus.
thanks for reading my moaning. sorry if i bored you half to sleep x

Good morning stephiey, really sorry to hear how you are suffering, I have had OA since being about 22, (and had Osteo-Chondritis in both knees as a teenager, was in a chair myself but only for a couple of months, most of my latter teenage yrs were spent on crutches) but not nearly as severe as yourself by the sound of things, I am now 42 and things have done the obvious and got worse, but with support of good family and friends and now this site (only been on here a short while) things are not totally dreadful..
I'm sorry that I cannot be more helpful but we are all here most of the time, you can have a moan along with any of us at any time if it helps you..

Let me know how things are going.


Tony

julie47

Hi stephiey

I just want to say how sorry I am thatyou feel so bad at the moment.

I think though you should talk to your parents even if it does make them sad to see you so hurt. Thats what parents are for.

I have always tried to put on a brave face for my parents I got RA at 25 just after my daughter was born. I am now 47 and it is only in the last couple of years that I have spoke to my mum about it and actually cried. She cried too.
My husband and daughter are both very supportive.
I would like to think my daughter would come to me and yes i would be upset for her but thats what mums do.

I hope you feel better soon , you have a great family and friends please talk to them

Juliepf x

jennylynn

Hi hon,

I'm very new to the forum so i havent written to you before. I just wanted to share my university experience with you in the hopes that i can offer you some reassurance.

I have had PA since i was 17, i can only imagine how you have felt living with the condition from such a young age. I got mad and upset when i couldnt keep up with my friends and felt very frustrated by the condition all the time. Even over silly things like not being able to go ice skating over christmas. I was too embarrassed to tell people about my PA.

But on the bright side i started a course at uni when i finished college and the support i got for my condition was amazing. I got extra time in my exams in a separate room so i could get up and walk around without having to sit for a long time, i got a special grant for a computer and printer so i could work from home and not have to go to the library in the cold, and internet access from home. I also had access to counselling.

I'm ten years on now and doing another course at uni, and even though my right hand is now quite badly affected by my condition, i am studying to be a dental therapist. As long as you are determined to get there, you can make it!

But we all feel sorry for ourselves and want to scream sometimes, i would actually encourage it! you will go crazy if you keep everything bottled up.

Keep smiling xxxx

speedalong

Hi Stephie, You have been offered a lot of good advice here.

Is university what you want to do? If it is then you should persue it, there is a lot of support out there for students - including funding for support etc and if this is what you want to do, it is worth finding out all about it.

If you have doubts - can you afford to take a year out? What could you do in a gap year? Would you be able to work part time and persue an interest/hobby?

Have you ever been to a pain clinic - as pain seems to be your main limiting factor. AC also do courses which I believe help with the coping side of dealing with arthritis.

Take care and keep posting,

Speedy

alarkra

Hi Stephiey,

I am sorry to hear that you are having a rough time of it. I can't give you too many warm words today as I'm feeling very unwell with RA and then what I'm convinced is now flu on top of it. I'm sending you lots of hugs ((((HUGS)))) Please use this forum to vent and get support from us. I find it's what keeps me going is knowing that people here understand what I'm going through. Try to stay strong. You most certainly have my sympathy. I'm sorry I don't have anything more positive to say today. Here, have another hug... ((((HUGS))))
A xx