August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Discuss the article on the Forums.

Young, Unemployed and Scared: A Trilogy! Any Recommendations?

Discussion in 'Lifestyle Management' started by AdAstraPerAspera, Oct 25, 2018.

  1. AdAstraPerAspera

    AdAstraPerAspera

    Messages:
    34
    Likes:
    79
    Melbourne
    Hi everyone,

    Sidenote: About a year or so ago I posted asking for advice regarding a career choice - many people suggested biomedicine, but I only made it through 2 units of study this year, and it's been a real struggle - but I'm determined not to give up yet. This is a mix of issues around living with ME/CFS, employment and advocacy so I hope this is in the right place - mods/admins feel free to move if not :)

    Well. I'm 20 years old, and I, and most of my family have been sick with ME/CFS for pretty much as long as I can remember. I have POTS and eyesight issues alongside ME, and I struggle to rate my capacity for work, because I'm at a weird in-between where I swing around severe/moderate/mild depending on the time, and how much I do - and I have no one healthy to act as a benchmark, so I think I tend to assume I'm healthier than I am (I showered AND cleaned AND made dinner - all in one day! I'm cured! :woot:)

    I can mostly push through, noticing a marked difference in quality of life the more I do (and a tendency to make mistakes. i.e. sometimes I'm well enough to get up and drive a car but I'll probably drive it through a red light or show up at work on the wrong day) But overall, I can't qualify for a pension in Australia and need a job to survive. I'm also determined to achieve the most I can within my pacing limits, and I want to make a difference.

    So what are my issues?
    I've applied for jobs all year and found none.
    I can do some free high need community college (TAFE in Aus) courses that will qualify me in these areas:
    - teacher's aide
    - dental assistant
    - allied health assistant
    - diploma of community services
    - diploma of justice

    They all seem plausible, but I was really hoping to complete a university course (something I've attempted twice and struggled with as neither course has been what I wanted and has taken a huge toll on my health). Does anyone know if any of these would be okay for someone with limited energy?

    What careers are best for people with ME/CFS? I need something sitting down, and I'm absolutely terrible at maths and technology, so coding etc. is out of the question. If I pass up the free courses to study at uni and murder my health, I want it to be worth it.

    Do you think if I get a career for advocacy's sake, I could manage to become a doctor with limited health? The problem is the bachelor I'd do to get there would qualify me in biomedicine, which has no jobs in Australia. I've also heard it's very strenuous. Would a degree in writing, business or social work be better to promote the cause?

    I just hate to think of all the lives I could change if I pushed myself harder.

    Basically, how do you guys motivate yourselves to study (which is SO much harder when you feel like you're dying all the time and your brain is mush) and what jobs would you recommend? Should I give up on my dreams, or postpone them and do a shorter course for survival's sake, or do I try to push through and get a degree so my life seems more meaningful?

    Thank you so much for anyone who has advice or tips, I'm sorry for my tired rambling and I hope I've made an ounce of sense!
    Much love to all the spoonies out there :heart:
     
  2. alex3619

    alex3619 Senior Member

    Messages:
    13,127
    Likes:
    37,318
    Logan, Queensland, Australia
    This is one of the most energy demanding courses, particularly in residency, with high demand on energy as a career.
     
    mrquasar likes this.
  3. alex3619

    alex3619 Senior Member

    Messages:
    13,127
    Likes:
    37,318
    Logan, Queensland, Australia
    I have lived this, twice. First, keep course load low, you need to study part time unless you have enough energy to go full time, which would only be the case for mild patients. Make sure the institution is aware you have special needs, they can make small allowances for your problems, like moving exam times around.

    I used to study for no more than half an hour. Then I would rest or play a computer game for at least an hour. Then more study. I kept this up for three years in my IT degree. For my biochem degree I was forced to mostly rest, and adjust my course load to my current health. However this second degree damaged my health even more, to the point where I could not pursue a career or further research despite my extra qualifications.

    Only you can judge if you have the energy, but if you only finished two units this year then it will take a long time to finish a degree.

    As for high priority careers through TAFE, you would need to investigate those careers a lot more.

    If I manage a substantial improvement I hope to update my IT skills through TAFE, as I got my IT degree before the world wide web.
     
    Sandman00747, Starlight and Pyrrhus like this.
  4. Rooney

    Rooney Senior Member

    Messages:
    160
    Likes:
    216
    SE USA
    Pushing through is pushing down on your delicate, ill body. You will be rewarded with worse health.

    Is career counseling available? In the past, this has helped me identify what I'm good at, what are my weaknesses. With many teachers in my family, a teacher's aid for little children would be physically challenging.
     
  5. Judee

    Judee Senior Member

    Messages:
    312
    Likes:
    616
    Wisconsin
    I think for being a dental assistant and maybe with some of the others on that list you would have to be standing on your feet a lot which might be difficult with the POTS.

    An idea might be to maybe make a list of things that interest you. Do you visit any websites like Pinterest? Do you have certain topics you tend to bookmark or give thumbs up to the most? That might help you discover areas of interest. I've often heard that a job won't seem like work if you pursue your passions.

    Once you have some idea of things you are most interested in you could analyze whether there is a way to work towards some goals given your particular health issues with this disease. For instance, I was very much interested in becoming a sign-language interpreter and took some sign-language classes but then when I was working in a volunteer situation, I found that the signing was too exhausting for me both physically and mentally. I never could have done it professionally.

    That might be something else you could try is to volunteer to see if something is a good match or not before you invest a lot of time, money and energy into it. Of course some professions don't have volunteer opportunities ahead of time but maybe you could at least work in the same setting to get an idea of how you might feel about it long-term.

    I agree with @Rooney though. You have to be careful not to push too hard. I wish I had learned about pacing and aggressive rest therapy early in this disease. Maybe I could have avoided some of the problems I'm facing now and healed a bit more in my younger years.
     
    Rooney likes this.
  6. Moof

    Moof Senior Member

    Messages:
    409
    Likes:
    995
    UK
    Firstly, the study: can disabled students in Australia ask for reasonable adjustments? This is a specific phrase employed in UK law, so it's probably different there, but any country with disability inclusion legislation should presumably have its own guidelines. With ME, you may be able to ask for more time to complete assignments, and doing one-to-one interactions via Skype, for instance.

    As for jobs, disabled people I know have made a living working flexibly at home in the following ways:

    • Trained professional proofreader
    • Graphic designer
    • Fundraiser for charities (grant applications)
    • Over-the-internet sign language interpretation for deaf people (a big training investment, but pays extremely well)
    • Exam paper marking
    • Welfare benefits advisor

    There must be plenty of other options, too. I wouldn't go into teaching – it's completely exhausting – and as @Judee pointed out, dental assistant may be pretty difficult due to the need to stand much of the day.
     
  7. Haley

    Haley

    Messages:
    5
    Likes:
    17
    I've worked with allied health assistants for years - they are always on their feet running around. So probably not the easiest job for someone with low energy levels...

    I'm in the process of completing a bachelors degree in Aus after coming to the decision that my current job was not a long term option for me unless my energy levels increased dramatically! I spent a lot of time researching jobs and then talking to people in those jobs once I had narrowed it down. I really didn't want to waste time, energy and money on something that wasn't going to work long term!!!!

    I study part time online - great for those bad days. I tried face to face for one semester, but it was just too hard (but I was a bit worse then too). The uni has been great - I get reasonable adjustments for assignments and exams, and the majority of the lecturers are really good about it. It is hard work though.

    Basically - do a lot of research be fore you decide on anything....
    Best of luck :)
     
    Moof likes this.

See more popular forum discussions.

Share This Page