Finding it hard to cope - advise please!

kimbo1

Hi
I've recently been told i've got arthritis, i'm only 20 and still at uni and finding it hard to come to terms with and feel like my friends don't understand why i'm struggling.
Would love some advice on how to reach an understanding that i've got arthritis and get to the acceptance stage.
Thanks

kat

Hi Kimbo,

Im 21 and i've had arthritis since i was 9. I totally understand about friends not understanding how much you struggle its the same with me but because people can't physically see our illness they think we are fine. I sometimes used to take my best friend with me to hospital appointments so they could gain some knowledge of arthritis and i found that helped a lot. Sorry i can't help much with acceptance stage as because i was so young when i was told i had arthritis i didn't really think much of it so didn't ask any questions at the time and as i can't remember my life before i got arthritis i've never really had to come to terms with it. I'm sure that with time u will accept it and we are all here for u anytime if u need to talk and get things off your chest. Sorry for going on lol.

Kat x

Kittkat

Hi Kimbo!
what are you studying? I am afraid I can't help you much with help at uni as I just muddled through. But I know there is help available if you need it ( equipment such as voice recognition software etc). There is also counselling at uni, I never used it but my friend used it for something else and he found it helpful.
I have never told my friends about my condition as it is really difficult to make them understand. I have always done a lot of travelling with my friends ( weekends away etc) and I don't think they would believe what a state my insides are In my eyes I think there should be a balance of telling them how it is but not the full lot. So tell them you have joint pain and inflammation and that you need extra rest and help. But I don't think unless you suffer you really get it so if you can't go out I would say I am feeling really crappy at the moment but I will come out another time. Make it clear you do want to go out etc but not right now as you are flaring etc.
Take care
Kat x

kimbo1

Hi
Studying Sport and Exercise Science, have got extra time for my exams so hopefully will help a bit What is it that you studied?
My house mates know, as they see what i'm like in the mornings but don't really seem to realise how tired and worn out it can make you feel, think it's something you can't realise unless you have it.
Any little hint and tips definately help!
x

charleeh

Hi,

I am 22, had it since I was 17.

Its hard for people to remember and sometimes often even believe there is something the matter. I have arthritis bad in my hands and when I started to wear a bit of tube grip people started being a bit more considerate toward me. Odd when you think about it but it makes sense as they could see it!

I always get fed up of "you're young to have arthritis aren't you?" :roll:

Meditating helped me for my exams. The extra time is invaluable I found too.

As for acceptance, everyone struggles from time to time and gets a bit fed up but for me its having contentment through various other avenues that gets me through. I mediate a lot, and find I have lots of things that make me happy. A positive mental attitude will get you through anything.

I hope you do well in your exams!!!

Best wishes
Charleeh

Bioluminescence

Hi Kimbo,
I'm 20 and am at uni (2nd year) doing philosophy and have been diagnosed this year too. Its all a bit of a nightmare with all the added stress and pain on top of the normal everyday problems. It can be so physically exhausting as well as the emotional side of trying to get your head around things.

I guess in terms of acceptance part of it involves expressing what you're feeling / what bits your having trouble with, looking at the problem head on. Knowing that you're not alone and there are always people there who want to help. All unis offer a counseling service and I think its really worthwhile to do that even if its just for a couple of sessions. The other thing is time, as humans we can adapt to a lot of things. I watched this youtube video about cronic pain and that helped a bit, he talks about how you had your normal life and now that you you have an illness that will be come your normal life and be a 'new normal' http://www.youtube.com/watch?v=rr8wIiypS_g

Where is your arthritis? Good that you're got extra time, have you looked into Disability student allowance and disability living allowance?

kimbo1

Hello

Yeah I've been surprised at how hard it is to come to terms with it - still in process!
I know exactly what you mean but I hate having to ask for help so its something I'm having to learn.
Thanks for the link very helpful!

Have it in my hands, elbows and feet, started on a new drug the other day so looking forward to when that kicks in!
Where abouts do you have it?

Bioluminescence

What drug have they put you on / what did they try first? So Far I've just been put on Sulfasalazine but I hope I can change off it soon as it hasn't done much and I'm still getting worse. Yeah I have it in my hands, an elbow, jaw, but probrably worse is one of knees as it is painful to walk

Asking for help is hard.... I don't really mind on here as everyone's in a similar boat and my boyfriend has been good. But I find it difficult to outline my needs to people at uni, often making the pain worse by trying to keep up with them i.e trying to take stairs rather than a lift as they've automatically started walking up them / not wanting to make a fuss. Family is difficult too, as they're trying to help but I guess I am resisting it to an extent and feel more stressed by their 'advice'.

I'm finding it hard to keep up with doing the essays / concentrating, might have finish my degree through OU. Are you keeping up with the work ok?

kimbo1

Have literally just started on hydroxychloroquinie so no signs of improvement yet, was gonna go on sulfasalazine but didn't want the fortnightly blood tests! Hope it either starts to work soon for you or you get something else that does.

Thats how I feel think its to do with pride, I hate having to ask for help, find it hard to cut up some foods so at home have a sharper knife but when I go out for dinner don't like to ask total strangers for help, or to be seen to be struggling with every day tasks most people take for granted.

At the mo keeping up alright, my course is more exams than coursework so just been pushing through when revising but when it flairs up definitely very hard to concentrate for longer than half an hour.

How long ago were you diagnosed?

Bioluminescence

Yeah my consultant want to put me on hydroxychloroquinie next month as well as sulfasalazine because the sulfasalazine alone hasn't made much difference. I'm a bit fed up with it all to be honest because if the hydroxychloroquinie doesn't make a difference then it will be about 5 more months before I get to change again and I'm really starting to loose a lot of flexibility as it is (I can no longer straighten my elbow or knee) and once lost it can be difficult to get back. I started getting symtoms in in September last year (at first it was only just like repetitive strain in my hands), I got diagnosed in December. What about you?

Although I should be getting a steroid injection which could help a lot in the very short term. Although I'm no looking forward to getting an injection in my bottom :oops:

It is difficult in public as sometimes it feels easier to struggle on rather than make a fuss. Although it I guess we should probrably say 'really sorry but I have arthritis, could you help me with this' etc but I guess it depends on the situation.

kimbo1

Has the sulfasalazine made any difference? Yeah its annoying that it takes so long for the drugs to work isn't it. Do you go to physio to help keep your flexibility? I'm extremely hyper-mobile so hopefully won't loose a lot of flexibility and if I do won't notice.

I started getting hand pains in August, was diagnosed end of February. Do you know what type of arthritis you have?

An injection in the bum does not sound nice but i suppose if it works it is definitely worth it, I'm just about getting over my fear of blood tests after all the blood they have taken from me My parents have ordered me a wax bath as been told its really good in easing symptoms, hoping it will work as beginning to flair up from me doing writing for revision.

I think with time we will get more comfortable asking for help, although atm it is easier said than done!!

kate21

Hi everyone
As someone who has been through this (diagnosed 2nd yr of uni) and managed to cope all the way through a post grad and out into the world of work, (Im 26 now and have been a primary school teacher for 3 years) I just wanted to say hello to you all. Any questions please do ask.

Sorry some of you are finding it so hard to cope. Have you read the spoon theory? http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
If you are confident enough to, I think it is a good way of explaining some of your problems to your friends/colleagues/lecturers etc. It's about lupus but alot of it applies to arthritis too. I would recommend being open about it if you can. I couldn't and really wish I had. I found it very difficult to say anything to anyone and to this day I find it very difficult to explain things and stick up for myself when I am questioned. My boyfriend at them time of diagnosis (now my husband ) is the only one who really know what I go through and I am so lucky to have someone who seems to have unlimited empathy for me. I actually think I lost a lot of my friends through not being open. I found diagnosis and coping with the symptoms very difficult, that I really didn't cope at all with being questioned by friends, that I just kept quiet and avoided them, until they didn't really bother any more either. I get on with people at work, but find it difficult to make new friends socially as I think part of me feels like it's not worth the guilt I feel when I let people down! - Please try not to be like me!

Thankfully my uni were fab. Do get in touch with the uni's disability service. I got a laptop with voice-activated software and all sorts, a £500 computer chair - fully adjustable, a digital voice recorder, a printer etc etc. They also made sure all my lectures/seminars were on the ground floor or lift accessible. Got me a stool for the dark room (I did a minor in photography), extra time on exams. They also arranged for my dissertation to be worth extra credit so that I still completed my degree on time (as I had a lot of time off and missed 2 modules worth of credits being ill and in and out of hosp).

Oh and Kimbo - I am mega hypermobile too, which helpfully adds other problems and makes some arthritis related advice non-applicable. Does your rheumy know about your hypermobility? I am very lucky to have a rheumy who is a hypermobility expert. Although I am currently considering going to the hypermobility clinic at UCLH for more advice. It's not easy having multiple conditions!

Hope you're all doing reasonably well. x Kate

Pebbles170

I was diagnosed just before uni, and managed to go on to uni and even had a part-time job too. I found the fatigue was the worst thing but my lecturers were really understanding and would let me skip the odd lecture and catch up another time if I really needed the extra sleep. You just have to learn to be honest about your arthritis, which is really tough I know. I work now and have tried to be honest with my boss but she's really lovely and wants to make a fuss and be overtly compassionate which really drives me up the wall! However talking about it is the only way people can know how to help.

KateRickwood

The spoon theory is amazing!

I've never read something that I can relate to that much!

I got diagnosed with fibromyalgia and rheumatoid arthritis at the end of last year, and at first I didn't except it at all, when someone would ask what I had I would explain what was wrong with me and not say the name.

Something I here a lot from practically everyone is your young to have that, as both fibromyalgia and rheumatoid arthritis are commonly diagnosed between the ages of 30-40.

So I've had this for about 6 months now and it is something you come live with. No to a point the people that don't have it will never fully understand but to a point they will.

I've been lucky, my friends and family have been brilliant and don't everything that they can to understand.

I know that it feels like the worst thing in the world right now.

But it will get easier

kimbo1

Hi Everyone

All your words of wisdom are very reassuring! The spoon theory is amazing, explained it to my family and they understand everything a lot more because of it

Have just finished my second year exams, have been to see people about getting DSA and should be able to get a good chair, voice recognition software and a good keyboard and mouse so things are looking up.

I'm feeling a lot more happier about everything now, realizing this is with me for life and i'm not going to let it stop me!

All your support has been really helpful and let me see that it doesn't mean my life is over and I can still lead a perfectly normal life, just take the arthritis in to consideration

Bioluminescence

I'm so happy to hear you got through your exams well and youre feeling so much better. And wow, how incredible of you to get through second year with all this arthritis malarcy to be dealing with! I hope you're looking forward to a well deserved break! *hug*

Well done for coming so far. Recently I have been contacting some old friends and people in London who were more like aquaintances and I feel like I have a really good support structure around me. I guess its like the whole thing of your friends can't necessarily instinctively know if youre in a bad place especially if its been a while since they talked. And the chances are theyd be a little upset to know if you were feeling bad, longing to go out to do something but worried the normal expectations would make it difficult (say finding a quieter bar where you can sit down or going to a restraunt where the food isn't tough to cut up etc).

The amazing thing is that once you have given something time to adjust and understand it could be that what is now a good bad would have seemed a terrible day before because all you wanted was to feel 100% healthy and 'normal.' Like I am unable to swim in a normal way, couldn't bounce on a trampoline, couldn't run but there is enough I can do if I think things through. For ages I was just so depressed I couldn't go to the park because I couldn't walk say half a mile and I felt the only way I could go is if I was given a wheelchair but now even if I go to park don't walk far and I can find a nice place to sit for a while near the entrance then maybe have a bit more of a wonder. It may not be perfect but it means I can enjoy a day in the park.

Have you got any plans for the summer? do you feel you are responding well to any of the drugs?
Its really made me happy to see how far we've both come really and probrably still how we could make our lives even better given time.

rubixcube

Hi Kimbo,

I didn't read all the posts in the thread, but I am 22, studying Law second year at university and suffering with seronegative rheumatoid arthritis since I was 16, but only diagnosed 2 years ago.

If you need help or advice give me a PM or we can talk on email/facebook.

Always helps to talk, university is a tough time and especially when you are suffering with a debilitating conditions such as arthritis. It feels like a terrible curse on your life, but trust me the Disabled Student Allowance can do everything to ensure you get all the help you need to ensure you are not disadvantaged.

I have loads of help from them, and my tutors at university. I have a learning support plan and help that I definitely would not be able to do university without. Notetaker does everything for me in lectures, I use voice-dictate software to write my essays. I have a scribe in exam, as well as extra time and rest breaks during the exam.

kimbo1

HI Bioluminescence

Thank you I feel really proud of my self that i've managed to get through the year, it was very tough at times but i am glad I persevered!

I agree sometimes you just have to know your limits and go for a compromise between what you want to do and what your body wants to do! I think this is what I find the hardest because I have always been independent and active and now have to keep telling myself to slow down!

I have a holiday job which I have had for several years so going there again but a bit worried about how I will cope there as it involves standing in a deli shop and then catering at outside functions, but I suppose the best I can do is let everyone know there will be somethings I won't be able to do.

I feel like perhaps the hydroxchloroquinie is working a little bit but not massively, but is it too much to expect to be pain free? Several people have told me that once I get on the right drug I will hardly have any symptoms, how true is this?

Kittkat

Hello Kimbo
Just answering your pain free question, no it isn't too much but I think everyone is different depends on how you react to meds etc.Some people may always be in pain others less so. If you keep on top of inflammation( meds/keep healthy/eat well etc) your body might even go into it's own remission/symptoms may lessen at points. I think the thing is is to stay positive. I do get very down sometimes but thing is I cope with it and so will you. Good luck