major change now I'm a bit lost!!

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major change now I'm a bit lost!!

Postby juliet » Thu Jan 15, 2009 1:57 pm

hi all!

well i decided about a week ago that there was no way i could go back to uni because i cant get around by myself (still stuck in wheelchair) and cant always care for myself. tried to sort out doing my exams from home but that didnt happen either so i've had to suspend my studies for a year but to be honest im not sure if im gonna go back... i need to earn some money sooner or later!

so the long and the short of it is im now back living at home full time, with nothing to do all day everyday. and everyone is telling me what i should or shouldnt do to help myself or make myself better but no one is asking me what i WANT to do or what i feel caperable of doing.

im quite an active person not in the fact i have ever been sporty or anything like that but i cant just sit around, i always need something to keep me entertained or i like to get out of the house and see new things etc. being at home with nothing to do is driving me mad. my parents have decided that i shouldnt get a job at the moment that i should just rest and try and get my fibro more under control, which i know makes sense but im going to go mad just sat on my bum all day! and they never asked me what i wanted or what i thought would work or not, everyone..parents, boyfriend, siblings etc talk about me as if im not there and keep trying to decide things for me with out even talking to me about it. none of them really understand what it is like to have fibro although they do try but they never ask me what i would be able to manage or what i would enjoy doing or anything.

im really struggleing at the moment with having all my independace taken away from me, because im stuck in the chair i cant go anywhere by myself, i can only drive on the very good days and then can only go places with shopmobility. I dont have any money for petrol now either! living back at home im being treated like a sick child rather than a sick adult and i feel like all the purpose in my life has been taken away. i feel the only thing im good for at the moment is being sick and trying to get a bit better... not exactly going to keep me amused.

i dunno im just really struggleing with the upheaveal of it all at the moment and the fact that no one actually talk to me about what i feel and what i want, they just tell me what they have decided or thought about what i should do, and when i try and tell them how i feel they just cut over the top of me or wander off!

sorry i have reread this post and it sounds really down, im actually not that down at the moment just frustrated and very angry at being ignored! sorry for the rant i just needed to get everything off my chest. got my first appointment at the new docs on monday and im gonna see if she can refer me to a counsilor or something to help me make sense of everything going on at the moment.

fibro hugs to all xxx
Juliet xxx

Happiness is not getting what you want, it is being content with what you have.
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Postby smoky » Thu Jan 15, 2009 4:37 pm

i am so sorry to hear you are having such a rough time; uni is one of the best times of your life and it must be awful to have to come home and be back with parents
Once you are more sorted, you might consider an OU course.... I had a bad patch of depression 2yrs ago and eventually gave up work. Whilst building up my mental confidence and strength again I decided to do an OU course; it kept me occupied, it put me in touch with others studying and it gave me back some belief in myself;
I imagine if you got some voice activated software you could cope with the essays and if you pick carefully there isnt even an exam or residential necessity.
I know the future must seem bleak at the mo but there is always a future of some sort even if it isnt the one you had originally envisaged; see it as fate intervening even if you cant see the positive reasons why at the moment;when i was depressed I was appalled at the fact i had to leave my job however, 2 years on i am happier than ever doing a job i would not have considered a year ago and am very happy my future has gone in this way :D
michele
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Postby lynn_east » Thu Jan 15, 2009 6:28 pm

Hi Juliet
As as mum we allway's think we know what is best for our children, and we do get it wrong sometimes,why don't you write a letter to your parent's about how you feel, it will be better than trying to talk to them and feeling like they are not hearing what you are saying to them,they proberly don't relize how you are feeling.
Thing's will get better but it will take time,hope this help's big hugs.
lynn xx :)
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Postby LinzWorld » Thu Jan 15, 2009 6:44 pm

I had really long response and I lost it. :roll:

I think counselling can be extremely helpful to both work out what you want to do and help you deal with issues like family.

If you want to work, don't think that there's no way. I would recommend talking to someone at the CAB about things like Access to Work and the Disability Discrimination Act and accommodations. That can make a huge difference - e.g. Access to Work sometimes provide taxis to get people to and from work so they don't have to spend their energy on travelling.

Concentrating on your health can take a huge amount of time up and that's why many people particularly struggle - it's harder to deal with medication changes if you're working or looking after children and a strit routine of pacing, stretching, physio, hydro, massage, etc cn be very time consuming! So taking a concentrated time to focus on your health could be a good option - but you do need to know that you will be able to do this properly.
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Postby princess » Thu Jan 15, 2009 7:31 pm

Hi

I am so sorry you are having such a bad time.
To be in a wheelchair at your age - thats so sad.
However i agree if you cant speak to you parents about how you feel maybe you could write them a letter and leave it for them to read and digest.
I think maybe you should also speak to you GP and have some councilling (been there and it did help ok).
How about and Open University course when you feel better
sending () hugs
xxx
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Postby velvet » Fri Jan 16, 2009 9:31 am

i dont know how well you get on with your PC and the internet other than this forum - i have found it a godsend!! as well as this forum i am a member of a couple of others where i can enjoy exercising my brain if nothing else - just general discussion and debate. as a result i have actually now started a forum of my own - which helps me feel less "useless" and unneeded, and is providing something that in the future i can point to as a demonstration of skills, if i get back to the point of looking for work. besides forums there are loads of other things you can do through the internet that involve people outside of the family - where you can be "yourself" without people seeing the wheelchair or hearing the confused speech. (dont know how much of a problem that is for yourself but it really gets to me - online people know me for me and dont have to get through the impression my speech can give of being confused or drunk)
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