Is Independance something I will ever achieve?

jellybean

Hey my name is Jess and I am 18 years old,
I've had Arthritis (AKA the pain in my ****) for 15 years now. As I've grown up my mum has had to help me in so many ways.
Simple tasks such as getting dressed, showered, doing my hair, getting in and out of bed etc..... and as I've got older the more frustrated I've become.

For a while now I was under the impression that I was quite independant, however my parents have gone on holiday without me, and for the past week I've been living alone.
At first I was thinking great! I can be a grown up, live alone and have more responsibility.

Then, like the clumsy idiot I am, I fell up the stairs. UP the stairs, how is that even possible? And it wasn't just a little fall, I hit the deck with a bang. The next week was filled with pain and medication to relieve said pain. A full week of missed college, frustration, pain, stiffness, swolen knees and an inability to dress my damn self......

Now I'm worried about living away for university next year, and after that. Will I ever be able to cope being on my own? Honestly, this is something I've never thought about, living alone. I always thought that it was a given, me being able to cope on my own. Now I'm not so sure.

I'm just so angry. After 15 years of living with this disease you would think that I would have accepted that my life isn't going to be normal, but no. And that frustrates me even more...

Does anyone else have these fears? Or had them and gotten past it? I could really use some advice from someone who truly understands, instead of people who have no clue about my life, and the day to day hurdles I have to jump over just to get through the day.

Sorry for the long post, I really needed a rant.
Thank you for reading.
Jess

dreamdaisy

Hello Jess, it's nice to meet you. Firstly, well done on taking care of yourself for the first time - that was a voyage into the unknown for you; OK, stuff went wrong but then it does that for all of us. I've had tremendous slips and falls but recovered because that is what one does.

My thinking is that perhaps this sudden dose of independence was too much all in one go. If your mum is your primary carer perhaps it's time for her to step back a little over time and let you do more and more things for yourself. Looking after oneself is hard work, time-consuming and (I find) takes a lot of concentration, especially on the bad days. That could be why you fell up the stairs (yup, I've done that too) but that is preferable to falling down them. Believe me. Right, I am yawning my head off and melting with heat so I have to go. Take care and I hope you sleep well. DD

elnafinn

Hi Jess

I am sure you will achieve independence with a bit more planning perhaps than others of your age may have to do. It is bad luck that you happened to have an accident with no one at home for a week or so but these things can happen to anyone unfortunately. Also that you have been unable to get to college (congrats for being at college ) this week so have perhaps been rather a lot on your own and had more time to mull things over. It was a shame that a friend could not have come stay with you perhaps even a couple of times in the week.

You will be ok at university, Jess, just be yourself and let others know that you have difficulty in doing some things, best not pretend. Be honest from the outset. Those that you will be living with, in halls of residence or a flat will all look out for each other.

Try not to feel too angry with yourself and everything, that is kind of wasting energy you need to use for other things.

By the way, do you still have your bright green chevrolet spark or have you moved on from that car?

Chin up,

Gentle hugs,
Elna x

stickywicket

Hello Jess. It’s good to meet you and first of all I’d just like to say how amazingly well you seem to have handled having arthritis from the age of three. You’ve clearly made the most of your education and are now looking for independence. Well done you!

I, like DD, have also managed to fall upstairs. It’s quite easy, actually :roll: You took a tumble and paid the penalty – a harsh penalty but that’s how it is, isn’t it? We easily inflict damage that has more consequences than it would for others. It’s frustrating and annoying and it can be quite scary as we wonder what the future holds. Yes, a little setback like that can start the doubts off but I think you will master them and become independent because you clearly want it and are determined. Life won’t necessarily be ‘normal’ as others’ lives are normal (What’s ‘normal’? Is there such a thing?) but you will forge your own normal and it will get easier.

I’d only had my RA for a few years before uni but I got my degree, worked, got married, had children, did voluntary work and now have grandchildren. I’ve never been ‘normal’ but I’ve had a ball and I see no reason why you shouldn’t too.

I hope you’ve been told about the help you can get at uni. If not, I hope one of our current students will be along soon to tell you all about it.

Petitesse

Hi Jess,

I am sorry to hear you are having such a difficult time.

I think even for young people without any illnesses it can be worrying to suddenly be completely in charge yourself however great it sounds.
I think DD is right, because preparation is the key. Perhaps if your mum takes a step back over time, you will be more aware of what exactly you will need help with or learn to find ways around the obstacles.
Perhaps this will give you more peace of mind and a feeling of being prepared.

Also I think that being independant should not be confused with being able to live life without any other people. No man is an island. What we need help with can be very different things, but we all need other people now and again. There should be no difference between needing someone to listen and needing someone to help carry stuff etc.

I am 41 and I can assure you that I am scared sometimes too. About my future and how I will manage. It is okay to be scared sometimes. But I know there will be people to catch me when I fall. Well maybe not up the stairs! But to help me manage. Just like I help them manage with their worries.

I hope you will enjoy the forum Jess and there will be people here to lend an ear when you need it.

(((HUGS))) from Pia.

salamander

Hi Jess,

You will be fine with a bit of planning. There must be a disability advisor (student services or something along those lines) at university you can get advice from to help with your studies etc. but also to find out what other help is available to you there. You might ask if there is any kind of financial aid available that you could spend on having someone to help you a bit, but,as someone else has said, you will have room mates or flatmates around you a lot of the time and I'm sure they will be there for you.

There are probably quite a few people your age who are students on here who can give you better advice than me. However, I live on my own and, although it's tough sometimes, I find if I plan and take shortcuts with things like cooking, I can do it with a bit of help from those around me.

archaeobard

Hi Jess,

You sound like someone who has got it together when coping with arthritis. Fifteen years is a very long time. I fall up the stairs all the time, so does my partner, and she has nothing wrong with her except clumsiness.

I agree with the others, you may need to plan things a little in advance, but you will definitely get you independence.

Without spouting some esoteric BS, what is normal anyway? Normal is what you make it. Normal is what makes you feel comfortable and able to manage.

My normal is going to work, staggering about with a stick, hanging out at the pub, going for a meal with my partner or friends, going to the theatre, spoiling my cats...In order to do those things I have to take three times longer to get dressed than anyone else...wake up at 6am to have some pills so I can get out of bed at 8.30am and be able to vaguely move, manage my workload so I don't become overtired, figure out how long it is going to take me to walk from point A to B to C etc and how much it is liable to hurt, make sure I know where the lifts and disabled toilets are in the places I go and to try really hard not to fall up the steps.

Sometimes life is poopey and you have to deal with things you don't want to. Sometimes I wish my arthritis would go away and I never had it. But if it did, I wouldn't be the strong person I am today. I wouldn't know the people I know or love. And without the problems you have faced, you would not be the strong person you seem to be, asking now whether you are ready to take the step into an independent life.

To be honest, you sound like a lot of 18 year olds wondering whether they are ready to cope with life on their own. You may have some extra stuff to worry about, but I am pretty sure you will get there, otherwise you wouldn't have bothered to ask for support.

I think you are amazing, and I wish you the best for the future.

Kat

Fitzroy

Jess,

I have no idea what like is like for you. Despite the tremendous obstacles you've obviously faced I sense a sincere and capable person. I've read many a posting on various ailments over the years and people who have dealt with much less than you for shorter periods of time are often more bitter. Me included. I wish you immense happiness in any way you can find it.

valval

hi jess i just want to say well done on coping with out the parents falling well i did it coming in back door no step so it happens but you got threw and we are proud that you did now going away to university well they ask if you have any needs and they bend over back wards to help out so do not worry about that you will cope and you will get so much confidence in doing so knew a Young lady about three years ago who was in same place you are her leg was so bad she did not think she would be able to go well she did and has got a first she has lovely boy friend and a full life OK some days she can not do all she would wish to but she has adapted with help of friends she has made do not give up your dreams goggle the university you would like to go to and see what help they offer good luck val

earthspirit

hi and hope you finding the replies you get helpful.

when it comes to things like clothing you can be more independent if you start buying clothes that are simple for you to put on yourself. i dont know your style but most fashions these days have plenty that closes at the front and are easy to pull over and take on an off.

i am quite often in crowded places where i fear i will be knocked over and my solution to this is a large shoulder bag with a long strap and i have this about hip level which helps me "bounce" people away from me if i need, just dont cram the bag with too many books lol

if you arent able to manage your hair yourself and you are going to be away from home, check out college/uni notice boards or put up signs and you might find hairdressing students who could give you a hand. maybe the best solution is to resort to going to the hairdressers every week. the cost is around £15 for a wash and blowdry or style and as a disabled student you get quite a lot of financial support so that would help with the cost.

if eating food is a problem then opt for finger food when you are out or things that dont need cut up etc. you can also have a healthy diet without having to cut chop or prepare food and not everything needs stirred in a pot but you can still eat freshly made food.

tripping up and stuff??? people who have no disability do this all the time. just make sure you keep a few bandages or stretchy supports in your bag along with some anti- inflamatories or some pain killers so you can always have on hand the things you might need

good luck with your future studies and i am sure things will work out fine

barbara12

Aww Jess dont you dare apologize for the rant, it will do you good to talk to us about it.
as Elna has said a bit of planning can go a long way, the others have given you so much advice, I just want to send you some hugs (((((()))))...I am sure you will get there xx

LignumVitae

Of course you will my love, you sound like quite an amazing lady. You are already very independent even contemplating spending time alone in such an all or nothing fashion. I found that developing that independence comes over time, by hook and by crook sometimes. You kind of find you develop a rather inventive bit of your brain that works when you don't even realise it's switched on. We all fall, even those without arthritis so don't see that as a bad thing. We all struggle, even those without arthritis. You are a brave women, contemplating the changes that many young people find too hard to contemplate. Give yourself the time and break and you will soon find you are doing it. I won't add any advice, there's lots already here but it sounds like you might me like me and need to have a banner that says 'YES YOU COULD DO IT LIKE THAT BUT WHAT IS THE EASY WAY?' I imagine your university colleagues will be so wowed by how well you manage that they will want to help, and you will know when to accept that help and when it just isn't helpful. Go girl, the world is your oyster and you will be independent. Big hugs, LV xx