By M&M on Wednesday, September 24, 2003 - 03:07 pm:

I was wondering, what kind of work do you all do?
I am 22 years old and thinking about the rest of my life I wonder what kinds of jobs would be suitable for me.

My hypermobility is kind of serious. I can walk no more than a couple of meters, I manage to get over-use injuries from reading a book (that is if I haven't sprained anything yet by lifting it) Well, you probably get the picture...

I am studying for a masters in Classics at the moment but I am not doing too well as this kind of thing does require the use of books occasionally... The plan was to become a highschool teacher of Latin and Greek afterwards but I am not so sure now.

Is anyone of you a teacher, or have you been? Does the hypermobility get in the way? What other jobs do people around here have or did they have? Which are good and which seemed good but were not? I am no longer aiming at jobs one has to go to university for. Anything that makes a living...

I do not expect someone to come up with the perfect solution for me but I would like to hear some of your experiences rather than learn everything the hard way.

By M&M on Monday, September 29, 2003 - 02:17 pm:

My future does not get any brighter yet :-) I do hope this does not mean none of you have jobs.

Smile

By Deb the friendly lurker on Tuesday, September 30, 2003 - 11:20 pm:

Hi.

I'm 33. I left one career behind three years ago and haven't worked full-time since. My hypermobility is not as severe as yours, but I've started to use the term "partially disabled," because it's so obvious that I am. I'm often injured and have serious chronic fatigue issues (not CFIDS, just chronic fatigue). And I'm just baffled.

Really. It never occurred to me that I might grow up and become so chronically ill that I couldn't lead a normal life. My parents and I are starting to understand that this won't go away, that I'll live with this forever. None of us knows what to do.

I'm sorry to reply with a non-answer, but I wanted you to know that you're not alone in this. I hope that others join this conversation and tell us about their employment situations.

Yeah, I'm hinting, people! Talk to us! Thank you.

By Hamfist on Thursday, October 02, 2003 - 01:22 pm:

You have "have serious chronic fatigue issues" and "am baffled" by this. A major problem when you have hyper mobile joints is that the natural reaction to a joint moving towards dislocation is for the surrounding muscles to tense up to try to control the joint. This means the muscles are having to work very hard. The problem is that a hyper mobile needs to have excellent muscle tone so that the possibility of fatigue caused by this muscle overwork is lessened. But a hyper mobile finds it very difficult to get good muscle tone because the only suitable exercise is resistance type. Any harsh exercise is a disaster. - Ian

By Deb, frustrated lurker on Friday, October 03, 2003 - 01:42 pm:

Yes, thanks. I understand that.

We're trying to get information from other hypermobiles about how they have adapted to life with HMS, whether they're able to work, how they can support themselves, and what kind of life they're living.

I know that no one can tell me whether I will be able to return to work full-time, but I want to know what other hypermobiles have done. Are we eligible for some kind of disability help? Have others gone back to full-time employment? What's next for us?

Please, people. Talk to us.

By M&M on Sunday, October 05, 2003 - 02:54 am:

Hi Deb,
I am on 'some kind of disability help'. Because I qualified as 'disabled' before my 18th birthday I get a certain kind of disability help, but it is not much, hardly enough to pay the rent and my health insurance. And with all the political changes going on these days it could be cancelled any day. I really need to find a way to support myself, but how?

M&M

By Michelle Cheam on Wednesday, October 08, 2003 - 10:57 am:

I haven't been able to hold but a few jobs in over five years myself. I got fired from my last and the others I had to leave. I have thought about being a teacher myself, but my doctor suggested this might not be right for me because of other conditions making it hard to sit or even stand some days.

I have tried to start writing. Granted the chances of me making a living doing this is very slim to none. I have three books in the works and one of them on it's way to being done.

If you are in doubt about work ask your doctor. If they aren't sure they can send you to someone like a occupational therapist or even pyhsical therapists to work with you to find what is right for you.

For me personally this wont work either. I have a combination of EDS, oestio arthritis in my knees, burcitis in my hips, and degenerative disk disease. This on top of the injuries I suffer on a all too often basis for my liking.

I am about to file for disability becuase I am tired of being fired because my injuries stop me from doing a part of my job and the sick days an physical therapy all adding up to the time I need off. Some find work though they can do with an understanding employer who can accomindate them.

The reason I personally considered teaching was all schools have handicap access. They are condidered a major employer so they have to make accomidations for you up to a point. Plus you can walk, sit, or stand as you find the need. You can also wear braces and other things that help us with our injuries and still do your job well in alot of cases. The only thing that made it fall through for me was there are times when I have to be flat on my back for long periods. This is the only thing I can't do at school.

I know I dont sound hopeful either but I swear there is hope for most.

Sincerly,
Michelle

By Az on Friday, October 10, 2003 - 09:22 am:

I was chatting with someone earlier in the year who has mild problems with HMS and she works in the civil services. She said that the civil service employ a very large proportion of people with disabilities. There is also a range of jobs they can provide from picking up litter to computer programming. Maybe if you saw a disability benefits advisor when you feel ready to work again they may be able to give more info on this.
Me Im going to go train to be an actor and force them to have real disabled people play disabled charecters ;) lol

By Michelle Cheam on Tuesday, October 14, 2003 - 08:13 am:

Unfortunately with everything I have combined work has turned into a major issue for me. Basically according to my doctors me walking is on borrowed time for now.

My EDS lead to a very early form of something called degenerative disk disease. This is basically a super aggresive arthritis attacking the vertebre in my neck and back. I can not sit very long at all without excruciating pain in my neck and back and actually get passed by laides in walkers when I walk at the malls lol.

From the best the doctors can tell me so far is that I will be lucky to make it ten years before I am in a wheelchair.

Granted I blame my EDS but maybe I should blame my old doctors even more. They kept telling me to strenghten my body to help with pain. I started lifting weights and actually got to a competing level. I was leg pressing over 600 lbs and bench pressing 175 when I was 14. For people with EDS this is a very very bad idea my rhuemy says people with EDS should never lift over 20 lbs withut exception. Adding weight to our already unstable joints only increases the pain and the speed of the degeneration.

By 14 I was suffering from back pain everyday and was told to stop lifting competitively but was lifting weights in physical therapy.

At the stage of joint deteriation I have right now I have degenerative arthritis in my knees, starting in my hands and shoulders, and full blown in my back. If a small storm comes though or it get below 80 F I am in bed for almost the entire day. It is the only thing that helps relieve the pain.

This is taking morphine, percocet, paraphon forte muscle relaxor, and voltaren maxium dose of anti-inflammatory. There isn't much more they can do. So I go to physical therapy every week probably for the rest of my life. I do water excersise to keep moving and to remove stress from my spine and other joints.

Right now most of my activity is dedicated to keping me going as long as I can. I have also started try to get involoved in awareness at least around me. I hope on day to help the EDS foundation in the US pass laws so they might actually teach doctors about EDS in school here. They believe it is very underdiagnoised here simply because doctors dont even know what to look for. I am getting my children tested in the hopes that if they have they will earn to take better care of themselves so they wont be in my shoes in twenty years.

I wish you all health and a pain free day.

Sincerly,
Michelle

By Michelle Castle on Wednesday, October 15, 2003 - 07:25 am:

M&M,

I'm also 22 and unable to work. I've applied for Social Security disability, but haven't recieved benefits yet. I'm hoping with the information I'm sending off today that everything will be taken care of, and the judge will rule in my favor.

I don't know for sure if you qualify fo SS or not. I qualified because my father died when I was a kid, making me eligible to recieve benefits on his record. If you are eligible on your parent's earnings though, you're disability must be documented prior to your 23 birthday. Although you won't be able to recieve benefits until after your parents (or grandparent, in some cases) die, you might one to check into the program and make sure you do everything necessary now to be able to recieve the benefits later on. You can find out everything you need from their website, ssa.gov.

By Sherill on Thursday, October 16, 2003 - 04:43 am:

Hi everyone
I'm 24 and have both HMS and fibromyalgia. I graduated from uni last summer and began work with a private retail company who, unfortunately, treated me very badly, to the extent that I left just before Christmas following the death of my Dad.
I then visited a disability employment advisor at my local job centre, who was absolutely fantastic - he spoke to me at length about what i could and couldn't do, and then sent my CV to all the local employers who he knew were understanding of people with disabilities. I kept searching for jobs at the centre - he would go through them and throw the ones he knew would not be supportive! Eventually, I landed a job with a local authority, who have an excellent understanding of access/disability issues - my managers are hugely supportive - i have the option to work from home whenever i am unable to make it to the office, they have brought in an OT to do a full workplace assessment, and continue to support me in my career.
While i am not doing the job i originally wanted to do, i just wanted to let you know my experience, which went from being very very negative, to very positive!
While my future remains uncertain as regards whether i will be able to continue working in the years to come, i am hopeful and try to maintain my positive approach (though hugely difficult at times!)
Wishing you all lots of luck,
Sherill x

By Az on Thursday, October 16, 2003 - 08:15 pm:

Hey Sherill well done in finding suitable employment. Is this computer related work that you have secured? I was thinking of maybe trying something like data inputting. I know its boring as hell, but it isnt a physical job and some places do let you work from home. But I am also intrested in other jobs that can be done from home if need be
Az

By Sherill on Tuesday, October 21, 2003 - 04:42 am:

Hi Az!
I do spend a fair amount of time at a computer, but also attend meetings, conferences and stuff ... I am mainly sat at a desk (which has been assessed and altered for me), and work from home one day a week at least - more if need be. A friend of mine (who has fibromyalgia like me, but not hms) works at a bank, in a call centre-type environment, another works from home as a distributor for a large company. I would really advise anyone seeking employment to get in touch with their local job centre - they have disability employment advisors who are really up on local employers and know the ins and outs of them all!! Mine was also very understanding of both my conditions - even though he hadn't heard of either of them before!
Wishing you lots of luck Az - I hope you find a job you enjoy, and that is manageable for you - it's taken me a while, but got there in the end!!
Sherill x

By Az on Wednesday, October 22, 2003 - 04:47 am:

Thanks Sherill. I ont be looking until next year sometime (04) hopefully I will have recovered a little (Lots of good physio ) Doesnt look like there will be any call centre jobs in this part of the country by then so maybe have to look for something else :}
Az

By sherill on Thursday, October 23, 2003 - 01:49 am:

Hi again Az!
Just to wish you the very best of luck - i have been very fortunate, and wish you the same success in whatever you choose to do.
Sherill