Longstanding JIA sufferer finding it difficult to cope

sunshine75

Hi all,

I'm a 36 year old teacher whose had JIA since I was 10 months old. Been through several joint replacements, operations, change of meds etc etc, so I'm very used to life with this unfortunate illness!

I'm usually a happy go lucky smiley person who never really complains but recently have been going through a tough time coping. Nothing really has changed, but I'm having a flare up currently (as well as having Ulcerative Colitis), a very bad hip which will probably need replacing within the next year and I just feel so fed up, alone, and struggling to cope with things I've always coped with. I live on my own now and family have moved away so I feel worried about the future for me and my independence. I don't feel I can really talk to my many wonderful friends and just needed a supportive reply or two to keep me going and get me through a very negative personal spell with people who can understand what this is like.

Any words of encouragement or similar stories would be gratefully received.

thanks to anyone who reads and replies .

x

dreamdaisy

Hi sunshine75, it's nice to meet you. I cannot reply too well as I have been out for dinner and am yawning my head off and have to go to bed, but I PROMISE to be back tomorrow and help you in anyway I can. I am an agéd crone of 53 who began this dross at 37, so I have absolutely no idea of how you have managed thus far: I doff my cap in respect (well, I would if I was wearing one!) and will try to be more constructive tomorrow. You have found a good place here, it's pretty quiet at the moment thanks to the holidays but there are very good people on here who will try to help as much as they can. I wish you well. DD

mig

I cant begin to understand what you have gone thru over the years,i have only been diagnosed with ra since last sept and i suppose am doing well.will be thinking of you.Mig

sunshine75

thanks both x

frogmorton

Hi Sunshine

Gosh you DO have alot on your plate :???:

I can understand that you ARE avery experienced person as far as this nasty thing is concerned, but you are right.....we all do need some support every now and then don't we?

YOu WILL cope and things may yet ease off again to a better level.

If they dont then you can get help at home can't you? Things to make life easier round the house if you haven't done so already (mind l bet you are already on the ball for this sort of stuff too).

I am glad to hear you have good friends and a good job - these things are so important aren't they??

I live in the Midlands and my Sister has lived no-where near us (bro and nephew are here and all our neices and my kids too) currenly near Dundee in Scotland. Never has there been a more independat person than my older sister.

She is 50 next week and coming down today to celebrate with us...and....the best news ever! She is going to see what job vacancies there are here

SO....if it ever comes to it and you choose to be nearer your family - they will be over the moon.

Love and hugs

Toni xx

sunshine75

thanks very much for your reply Toni, hope things are good with you. x

dreamdaisy

Afternoon, sunshine, I have been thinking and pondering but as I am not doing too well today I shall defer an answer until I can be genuinely more positive than I feel. It's biting at me today, both sorts of dross, and I am away to my bed for snooze. Keep talking to us though, someone will listen and answer, of that I am sure. I wish you well. DD

dorcas

Hello sunshine nice to meet you.!

You've come through so much already :shock: so it's not surprising that you are finding it a bit difficult to cope.... It can be tough living with 'arther' and I agree that even with the best of friends there are times when you need to chat with others who understand.. and share the same/ similar experience.

I have PA and over the years have had joint replacements, fusion and excision.... all to my benefit I might add.! ....and have a TKR op in the very near future.

The good folks on this forum have supported me.... and I'm sure will help you in any way possible; so please don't feel that you are isolated We do go through peaks and troughs with this condition. :roll: and it's in the difficult times that finding kindred spirits can be of such benefit (at least that's what I've found) .... so I'm glad you've found the good folks of the forum.

Keep posting....

((((hugs))))

Iris xx

skezier

Hi Sunshine

I live alone and close friends... they tend to be miles away so I kinda understand about the fears for the independence BUT you going to be ok flower.

Just cus you have had things for so long doesn't mean you are always able to cope... in fact the fact you have had it so long can hit you hard here and there!

I know I have had oa since my tens but I still have bits where I can't cope and think hell is this it.....

I think we sometimes let the future get too big if that makes sense?

You talk to this lot here cus they are very good at helping and you are able to say it as it is and not dress it up cus you don't ant to burden folks with it all.

It will be easier once you know what they are going to do with that hip and then flower you will be able to get aids and things to help from ot and you will cope.

I also think your friends will rally around if you need them to. Hang i there and try just taking one day at a time for a min. ((( ))) and a hope Cris x

sunshine75

thanks very much all, it really helps to know people understand these things.

I guess I'm just going through a bit of a trough rather than a peak, I should be used to it but life has its way of shaking things up a bit doesn't it?!

xx

julie47

Hi Sunshine

sorry I haven't replied sooner. I hope, as I am abit late that you are now feeling a little better.

I am sending some positive vibes and a few gentle hugs just incase ((()))

Juliepf x