Anyone go to university and have CFS?

Discussion in 'Fibromyalgia Main Forum' started by buddyJ, Sep 6, 2006.

  1. buddyJ

    buddyJ New Member

    I'm just curious if there is anyone out there who goes to college or university while trying to deal with CFS? I am just about to start my 5th year in university (my 4th with CFS - I became really sick the summer after my first year) I love school but it's really hard to combine that with trying to take care of myself at the same time. I'm going part-time right now, which sort of works. I was wondering if anyone has any ideas how to make going to school easier? I have a hard time learning and recalling new info since the CFS started. A bit of brain fog during an exam is definitely not an asset!! :p

    Any advice would be really appreciated!
  2. STML

    STML New Member


    Hi buddyj,
    don't know where your'e from, as i'm from england, had to quit university after a year, pushed through that year but physicaly crashed, took a yr out then started doing distance learning university on my computer at home, over here throughout europe we have a really good university online,the open university, so wonder if theres anything like that you could do as usually they convert all the work or credit you've done so far to their system and you just carry on,
    hope u sort it out, STMLx
  3. LottieWilkins

    LottieWilkins New Member

    Just wanted to offer you encouragement that it is possible to finish a university degree, even with CFIDS/fibro (see my 9/5/06 post on this board called "Abundant blessings; a viral curse" for the results of my own long endeavor!).

    Yes, it is indeed hard to care for oneself and complete school. There were several things I did to make it possible:
    - I let go of my previous performance standards. I had always worked for only the highest grades. I came to grips with setting my personal standards one mark lower. Guess what! It was *way* easier to work to that level; and most of the time I got the higher mark after all! I simply didn't stress about it as much or put previous extra efforts into it.
    - I worked and looked like a 'normal' whenever possible; when things got tough, I went directly to the professors and worked out modifications with them. Modifications looked like extensions on certain assignments; changing of grading for a really hard course to a simple "pass/fail" (my program allowed 3 or 4 of those throughout my graduate career; getting individual professors to take me on for 'readings/report' courses (i.e., self-paced, no class attendance) up to the maximum my program would allow. Online courses would now also be an option (beware, though, as those can be more taxing that you might realize; workloads are sometimes increased to make sure the experience is as 'intense' as an in-class one).
    - I took semesters off when health required all of my attention, or went down to just one simple class. This took me a long time, but I *did* finish.
    - Minimized walking; took healthy sack lunches and just *sat* between classes instead of trying to rush to get here and there and back again.
    - When things were really bad painwise, I arrived early having planned and arranged for the most supportive/comfortable seating possible.

    Now, nothing/no one, not even these illnesses, can take that degree away from me.

    Keep the faith; and blessings on your degree completion, which will be terrific no matter when it might be.
  4. buddyJ

    buddyJ New Member

    I'm from Canada.. and my program doesn't have the option of taking courses online or the pass/fail marking. They are very rigid on those types of things. I have found that individual professors might be able to help with deadline extensions, but for the most part I've got to do it just like everyone else. I'm studying Kinesiology and a minor in Music. Both I absolutely love!!

    thanks for the comments :)
  5. brella

    brella New Member

    Hey there. I'm also in college at a university..this is my 4th year and my 2nd with real bad FM symptoms. Everday I want to quit because it's so hard but all I can say is don't over work yourself. Listen to your body and if it takes you 5 more years or more it's okay, just take it slow.
  6. buddyJ

    buddyJ New Member

    thanks everyone!! :)
  7. upnorth

    upnorth New Member

    I'm also trying a master's degree part-time.

    You should look into services for special needs students at your university. My university considers CFS a medical disability and with written info from my Dr. I'm allowed extra time on assignments, note takers (for brain fog), scheduleing adjustments for exams (if they all fall close together) as well as other accomodations if needed.

    I haven't really used any of these but you should see what's available. (I'm in Ontario,but I'm sure other Universities make accomodations as well.)

    Good luck and don't make yourself sicker by pushing too hard. relapses suck!

    upnorth
  8. buddyJ

    buddyJ New Member

    Hi upnorth,

    I'm studying at McMaster in ontario. Can I ask what school you go to? While Mac doesn't have CFS as a listed disability I do have access to their disability services.. although limited. For the people who work there it's the first time most of them have heard of CFS and with me being new to it myself, I'm not even sure what they can do to help me. We are learning together I guess. They do wish to help though, which is really nice!

    I hear you, yes relapses totally suck! I'm trying to NOT take too many courses, and NOT work too hard... but it's hard to find the right balance, and every new year is another experiment.

    Best wishes to you as well with your master's degree! :)

    buddyJ
  9. upnorth

    upnorth New Member

    I'm at Lakehead (in Thunder Bay). The woman who deals with medical disabilities at our learning assistance centre said she has quite a few students with cfs/M.E. She said that none of them were taking a full course load.

    I'm also wondering if you realize there's disabiity money available from OSAP. If you get OSAP and can prove you have a 'permanent' disability, you automatically get $2000 in grant. For a disabled student, full time in considered 40% which is why I switched from one course to trying for 2 (wish me luck).

    I'm sorry you have to pave the way at MacMaster for a better understanding of the illenss, but I guess those after you will be appreciative. You should check out the MEAO-cfs.on.ca website as I think they have booklets and stuff for schools to help them understand and accomodate people with CFS.

    Anyways, good luck with your semester
    upnorth
  10. buddyJ

    buddyJ New Member

    It's nice to know that there's more people out there who are trying to study with CFS. I felt really alone!

    I did recently find out about OSAP for disabled students and I successfully was accepted for that this year :) I'm trying for two courses as well. Good luck with your two courses!!

    Is there any chance you could provide me with a contact to the woman at your learning assistance center? It might prove helpful for me and the McMaster Center to hear from her what she's learned from other students dealing with this disability.

    buddyJ
  11. rockgor

    rockgor Well-Known Member

    I was very interested to read that you are studying Kinesiology/music. Kinesiology is one of my favorite composers. I especially like his Kazoo Concerto.

    I had mild CFS when I went to law school. Worked full time. Didn't know I had CFS. Just seemed to be tired a lot. Wasn't disabled till after I was graduated and had practiced a few years.

    Best of luck.
  12. upnorth

    upnorth New Member

    Sometime this week I will stop by the centre ( I need to go anyway) and I'll ask her if she'd be willing to talk with the folks at your centre....I'm pretty sure she would be willing, she's really nice. I'll let you know by the end of the week.

    Take care,
    upnorth
  13. KMD90603

    KMD90603 New Member

    I'm in college in the registered nursing program, and I also have CFS/ME. It is extremely difficult many times. However, I'm determined to pursue my dream of becoming an RN and refuse to let my disease stop me.

    There are many times I have to choose between studying and resting, especially when I'm feeling sick. Many times I have to remind myself that I do still need to rest and that the world won't come to an end if I don't finish all my studying. I think you just have to do the best that you can do, but don't overdo it.

    As for ways to make it easier, I find that if I allow myself to rest before studying, I can retain the information better. If I'm feeling really sick and I try to study, there's no way I'll remember any of it. So, I try to force myself to lay down for a couple hours beforehand. Also, some schools offer disability services. Check with your school and find out about it.

    Good luck with your schooling and remember that your health comes first.

    Gentle hugs,
    Kim
  14. buddyJ

    buddyJ New Member

    I've never heard of a composer by the name of Kinesiology.. neat. I actually was referring to my major. Kinesiology is the study of human movement and anything related to that, such as physical activity, health and disease, physio, sports injuries, nutrition, physiology, anatomy etc. So I study that stuff and music for fun! :)
  15. buddyJ

    buddyJ New Member

    thanks, that would be awesome!
  16. buddyJ

    buddyJ New Member

    keep at it. I think it's a brave effort for people to still keep at their dreams even though their health is a definite struggle or obstacle. I'm sure that once you're done your degree and actually get to practice nursing, you'll be better equipped to sympathize or empathize with patients. CFS does seem to have symptoms of like a gizillion other diseases! :p I'm hoping you have a great year and things look up for you as well.

    buddyJ

  17. DorothyVivian

    DorothyVivian New Member

    I earned a second master's in psychology--the first time was in marriage counseling and this time in rehabilitation counseling and psychology. (I was sick during the first graduate degree study, but didn't really realize it.) Then, about ten years later and after dealing with severe FM and CFIDS, I became so bored without a purposeful goal, I started a graduate course in rehabilitation counseling. It was set up for those of us working during the day. In the 3 hour evening, once a week classes, I used a tape recorder along with taking notes. I wrote papers; did library research by stopping to nap in my car parked nearby in 'handicapped' parking next to the university library. I learned to do almost everything in short stints, taking frequent breaks, and taking brief naps. I found that the use of kitchen timers helped me totally relax for 15 minutes or whatever time I could spare. I still use several kitchen timers to allow me to close my eyes for a brief 'catnap'. The knowledge that I won't oversleep, allows me to relax deeply without the tension caused by the worry that I would sleep past the time I had to spare.

    In the past, I used to write a long research paper without more than a small break or two. Now, I write for an half hour or 45 minutes and then perhaps watch a DVD, go for a walk, work on a painting or sketch, or take a nap. This way, I can work on large projects by taking it in shorter periods. For me, this way of breaking up a project prevents the 'brain fog' which, I believe, is partly the result of anxiety and stress of pushing myself to get through a task.

    Actually, I think my writing has improved as a result of working this more relaxed way. And, probably my art work has also improved. (I don't stress myself with art though.)

    In university classes, at first, I'd tape a class and then listen to it at home. As time went on, I only listened to the parts I was unsure about. (I learned to 'log' in my notes where on the tape specific info was located.) Finally, I noticed I was able to pay attention in class much better and that the information was retained much better. I believe that then, the tapes were sort of a 'security blanket' and that simply knowing I had the info on tape helped me to relax. I used a small Panasonic tape recorder and 90 min. tapes. I had two sets of rechargable AA batteries.

    I'm retired now, but I have abt. 100 tapes from those classes along with the notes. It's quite inspiring to listen to some of them again as I get older. I enjoy refreshing my understanding of this field of rehabilitation psychology and counseling. It is a most intriguing field of study--especially since I have been disabled for decades myself!

    You may know, in the USA, colleges and universities are required to have a department of services which provide resources and services for students with a disablity. Some provide extensive services; others provide the bare minimum oof services only for students with severe disabilities. And, because of the widespread ignorance about FM and CFS, even in the health care sector..there may not be as much help provided at the university as you actually need. Nevertheless, it will be important for you to check out what's available, if you haven't already. And, you probably willl develop your own unique ways which will help you cope with the limitations of CFS.

    I encourage you to continue to study and learn as much as you find possible since establishing the attitude of curious exploration will stand you in good stead no matter what you experience! Your endeavors will all be worthwhile!

    I wish you the best of good fortune--and please let us know how you are doing!!

    With love, Dorothy
  18. buddyJ

    buddyJ New Member

  19. Slayadragon

    Slayadragon New Member

    I got sick when I was halfway through my Ph.D. program. Mercifully, I had finished my classwork, but I still had my dissertation to finish. I had expected to finish it in two years (and actually probably could have done it in a year if I had maintained my previous level of functioning); it took me almost four. I spent a lot of time doing absolutely nothing....this was before I found a lot of the things that help me now. Sometimes I'd get up enough energy to do a spurt of work on it, then collapse for a while longer. Fortunately I had a kind dissertation adviser who, even though I wasn't able to explain exactly what was wrong with me, was patient and let me go at my own pace. I still feel that I failed him a bit since I didn't fulfill the career potential I had when I started with him, but a person can only do what she can do.

    I agree with all the remarks that everybody else here has written and don't think I have any other suggestions. I think it's possible to get through school with this thing even if you're really sick (and believe me, I was really sick during those first couple of years I was working on/not working on my dissertation). You may well have to go a lot more slowly than other people.

    Actually, the one question that I would ask myself with regard to going to school is whether it's worth it. In my case, I had a limited number of years to finish the Ph.D., and I knew that if I did so I would have a lot more options (e.g. doing consulting on my own rather than working at a job with set hours). In another circumstance, leaving school (or postponing it) might have been a better idea.
    [This Message was Edited on 09/16/2006]
  20. Chickybabe

    Chickybabe New Member

    Hi Im from New Zealand and I finished my Bachelor of Education in 2004. I got sick mid way through my first year and gradually got worse as my studies continued. I didn't have a diagnosis for what I was going through till 2005, so I thought I was going mad!

    Keep going for it and you will suceed! I look back now and wonder how on earth I got through it all. Because I didn't know what was wrong I kept on fighting against it (sooo the wrong thing to do) and now, five or so years later, I can't work at all cause my cfs has gotten so bad.

    PACE YOURSELF and you will get through it. You also have the benefit of knowing what you have and therefore how to deal with it.

    Kia Kaha (keep strong)