International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Long Term Plans- Hope for the Best, Plan for the Worst

Discussion in 'Lifestyle Management' started by sparklehoof, Nov 26, 2017.

  1. Hi Friends,

    How do you make plans to and set goals for your long term future with regard to promise that there will be a cure or treatment that isn’t currently available?

    My situation is that I became sick as an adolescent and my symptoms have been at a 70%-80% on the MEA Scale since they began in 1999. I’m in the US and receive Social Security, but it’s still well below the poverty line. I’ve been very fortunate that my parents allow me to live with them so that I can use my income on healthy foods, supplements, transport and a phone. (All of which I’m extremely thankful for.)

    Like many of us or probably most of us, I kept thinking that I would improve and be able to finish school, support myself, have hobbies and maybe meet someone and have a family. As years went by, my healthy friends and friends with similar illnesses achieved these milestones. By my mid-thirties, my biological clock only had so much time. If only we could negotiate with our bodies and say:
    ———
    Dear Body/Me,

    I’ve been in a little traffic jam and haven’t moved for about 18 and a Half years (1/2 my life) and so I’m running a little late for my life goals. These future experiences are still very important to me and I promise I’ll be there as soon as traffic starts moving.

    In the meantime, could you grant me an extension on my life expectancy and increase my egg count by about 25 more years? This may enable me to attend my undergrad prerequisites, go through medical school and residency, repay my college loans and provide for myself financially and maybe start a family?

    Thanks so much,
    ———

    At 38, I still haven’t been able to sustain any kind of work. My parents are in their mid-70’s and if they need to move to a retirement community/senior housing/nursing care, I will need to try to move to public housing and may not be able to afford to pay for my specialty medications, see my doctor out of state, or have transport or access the internet from home. I’ve been so fortunate to have these privileges and luxuries, that I have a lot of fear about going without them while being sick. I didn’t fear these things when I was healthy, because I felt less vulnerable and more self reliant.

    At this point, I’ve wondered things like, “if I go to school one or two classes at a time, take out loans, and finish my degree in about 10 years, might their be a new treatment that could make me well enough to work and earn enough to repay the loans and meet my basic needs without going into a push-crash cycle by trying to work too many hours?

    I wondered how other people who are single and became sick before they finished school, had partner or career think about milestones like these. Do you try to get an education in hopes that you’ll be more qualified for a higher paying job (given that you’re hired and will become healthy enough to work), Maybe by the time you finish school there will be a treatment that makes you well enough to work? This way, you can start working as soon as a treatment is available. Or do you take a “safer” option in which you avoid taking on responsibilities that are too much for you with your health as it is such as going to school or starting a family?
     
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  2. aaron_c

    aaron_c Senior Member

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    Hi Sparklehoof

    Your situation sounds quite similar to mine, and I have many of the same questions. I wonder about what will happen if I am still sick when my parents get too old to support me. And I also wonder about how much financial sense going to school makes. If I got better next year I wonder how much of career or family life I will have to sacrifice because of all the time I've spent being sick.

    One thing I've thought about recently is that some sectors are more likely to discriminate based on age than others. High tech and journalism, for instance, seem to prefer young ("tech-literate") college grads, both because they are cheaper and because it is assumed that they understand the newest forms of electronic communication better than people even ten years older. Whereas becoming a physician and opening up a private practice might not have the same limitations.

    Mostly I put off seriously considering these things under the logic that "those would be great problems to have."

    Also, have you considered marking this thread "members only"? It seems like the kind of private conversation that maybe shouldn't be easily googleable.
     
    ahmo, mrquasar and MastBCrazy like this.
  3. PinkPanda

    PinkPanda Senior Member

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    I think it's good to have hope for a cure, but I would also have a Plan B. Making firm plans based on a cure till xy might get you into a difficult situation if research doesn't progress in accordance with your plan.
     
  4. andyguitar

    andyguitar Senior Member

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    Having more qualifications might not get you a better job so it's probably not worth the risk that study might make your health worse. There are many ways to feel useful other than the world of work. Ever thought of changing your approach to treatment?
     
  5. confetti11

    confetti11 Senior Member

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    Hi sparklehoof, boy this is a big question with a lot of heavy aspects to it. I'm 10 years older than you but sick most of the same amount of time. My history is different in that I've done a lot of treatments of all kinds and can function around only 20-30% disabled on that scale (usually). I was able to complete a bachelors and masters before I got sick. However, I don't see much reason I may ever use them again...because even at 20-30%, I still need flexible, creative type work arrangements that typically don't require a degree (i.e., sales). However, that being said, I sometimes do need my bachelors and I think having it allows me to get jobs more easily, so I think there's likely always value in completing this degree, if you are able to be back in the workforce. And if you feel you have a purpose by pursuing it, that may hold value in itself.

    Agreeing with @andyguitar though, can you look into other protocols for improving your health? Unfortunately, my opinion is there likely won't be a "cure" but this condition can sometimes be managed.
     
    eric_gladiator likes this.
  6. I don’t think there are any treatments left for me to try. Have you found a treatment and way to support yourself?
     
  7. andyguitar

    andyguitar Senior Member

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    I am here as a former paid care giver so I dont have the illness. As to what would help you, I would need to know specifically what you are taking at the moment before I suggested anything. You can PM me if you prefer not to make public to much about your health.
     
  8. I agree.
    Unfortunately, I’ve been struggling to make a “Plan B”. It seems like some people have families or spouses with money, or had a career/connections/training/experience/resources/years paid into SS or retirement pensions to fall back on. For others, it seems like their parents are younger and still able and willing to support them, so their chances of improving may be higher because of their age and how long they’ve been ill or it may be more likely that their families can support for more than a couple more years- or maybe even until there is a treatment or cure.

    I’ve tried every treatment, I know.

    I tried to invest in my education- U spent from 1997 until I graduated in 2012 in college on and off, applying for scholarships and grants, going part time, and full time and switching majors from pre-med/biology, to outdoor leadership, to communications, to graphic design and eventually got a degree in art, because it was the easiest way to graduate.

    I tried to work to see if there was a career path or even part time job that didn’t cause me to relapse. I went to vocational rehab and met with a career counselor, I went to the Woodhull Institute for Ethical Leadership in 2005/2096, I earned a certificate in non-profit management in 2006, joined photography collectives and trainings, I went to Puerto Rico in an effort to learn more Spanish, last spring I became certified as an Integrative Wellness and Life Coach etc. Throughout all of these experiences, I was too sick to really focus and maintain contacts that I don’t remember much of what I learned.

    I’ve tried odd jobs, volunteer jobs, nude modeling for art classes, babysitting, house sitting, working in stores, home personal/health care, cooking, sewing, photography, independent art commissions, consulting, curating art shows and organizing fundraisers.

    I thought about becoming an expat or trying to marry someone to gain citizenship into a country with universal healthcare. I thought of only being open to dating people who had good health, educations and stable well paying jobs, but it goes against my ethics even if there was someone that wanted to date me. I even had surgery for dyspareunia in hopes that it would help improve the chance that someone would want to be with me.

    I looked into real estate, property ownership and flipping houses. I searched the globe to try to find a warm location where I could by a very inexpensive 3 bedroom house or building, renovate it bit by bit, live in 1 room rent 1 room annually and use a third room for Airbnb, in hopes that I could achieve housing stability, offsite my rent without risking losing my benefits, it could be a means to connect to the world socially by meeting new guests without leaving my home and it would give me a sense of purpose and place.

    I’ve talked with lawyers, financial advisors, social workers, doctors and therapists and still the conclusion is that my symptoms affect so many aspects needed to work, that I just need to wait and hope that something changes.

    At times like these, I wish that I felt faith, comfort and relief in prayer or religion.

    I’d love to read other people’s stories about efforts they’ve made and the lessons they learned from it.
     
  9. David Jackson

    David Jackson Senior Member

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    Hi Sparklehoof; I really don't feel so good about giving you advice, because I've been in a different category to you - as you put above, some people have families with money. I've had the luxury of not having to worry about money until now, when I am about at a level of health where I could actually begin to earn something (somehow). However, reading your story made me think of two things that I've learnt along the way, which may or may not be helpful to you, and I hope you can understand that I do not mean them in any kind of condescending way:

    1. I think there are cures for this illness existing right now, it's just a matter of finding them. However, in saying this, I am aware that I have been extremely fortunate to come across the healers that I have. I must have dome some good, at least, in my previous lives, to deserve a recovery.

    2. I really like this one myself, but it's not for everyone: If something is going to be too difficult to attain, stop needing/wanting it. However, this is coming from someone who plans to eventually build a yurt for himself and live off the grid.

    But, yeah, I'm taking something from what you wrote, too, because you really have been soldiering on, you know.
     
    andyguitar likes this.
  10. “2. I really like this one myself, but it's not for everyone: If something is going to be too difficult to attain, stop needing/wanting it.”

    This is interesting. Are you saying that you stopped needing/wanting your yurt?

    It’s interesting to think about not needing/wanting relief from sickness, or to stop needing/wanting to work to pay for my basic needs. This has been too difficult for me to attain, but if I stop wanting this, I’m fearful of living on the street especially while chronically ill.
     
  11. Jesse2233

    Jesse2233 Senior Member

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    @sparklehoof I can relate to a lot of what you’re saying...

    Curious what treatments you’ve tried and what your worst symptoms are.

    Wishing you the very best
     
  12. Thanks for your post. I’m sorry that you can relate. I’ve tried countless treatments, too many to list. I’ve seen many doctors, including Dr. Enlander, Dr. Levine. They both said they don’t know of any treatment options.
    I began seeing one of Nancy Klimas’s colleagues at Nova Southeastern 10 months ago and was prescribed Immunovir and LDN, but I’ve had no improvement. I’m scheduled for a 1 year follow up this February.

    My main symptoms are physical, cognitive and emotional- joint pain, PEM, sinus problems, migraines, dizziness and maybe orthostatic intolerance, light, sound, smell chemical sensitivity. There are so many, but the ones that interfere the most are that my processing is very slow, I can’t concentrate, read, learn and recall info.
    I’m exhausted and have flulike symptoms daily that wax and wane. Those are a start.

    Have you tried any treatments that have helped you? What symptoms do you have? Have you found a way to go to school or work full time?

    Thanks again for writing
     
  13. Thank you so much for your reply. I’m sorry it’s taken me a while to thank you.
    I can definitely relate to what you wrote about “those would be great problems to have.” Whenever I’m at the doctor and they ask about my asthma and why I’m not treating it, I always think, because I’m too sick to exercise enough to trigger it one step at a time, right? Haha
     
  14. Jesse2233

    Jesse2233 Senior Member

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    Ah yea, those are three top doctors so I can understand your disappointment. If you're not totally burned out doctors you might try Dr Elena Frid in NYC. I can't vouch for her personally, but her conceptualization of ME/CFS and Lyme as autoimmune encephalitis are interesting, and I understand she uses a wider range of treatments that include IVIG and plasmapheresis combined with anti-microbials.

    Ugh I'm sorry to hear that, that sounds like a tough mix. Any noteworthy abnormalities on your labs?

    High dose IVIG helped me a bit, and mild hyperbaric oxygen has gotten me to a point where I can drive, watch movies, and walk 4-5k steps on a good day. Right now my doctors are experimenting with photopheresis to see if it does anything. My main symptoms are low physical stamina, constant lightheadedness, muscle twitching, chest pain, and diminished cognitive function. I probably have PEM, but it's more subtle than what I see others describe.

    I haven't found a way to go back to work. I used to run a business full time, and it was extremely demanding both physically and mentally (emotionally as well to be honest). I can work on it on a very part-time basis, but so far not nearly enough to grow it to where it needs to be. It may or may not be a possibility in the foreseeable future. I'd also like to work again full time as a UX designer (what I did before my business), but so far my stamina and cognition are too inconsistent.

    Feel free to PM me if you'd like to talk further.
     
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  15. tudiemoore

    tudiemoore Senior Member

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    Sparklehoof, as far as utter practically goes, you may want to look at a website I throughly, enjoyed "How to Get On", (I believe is the name or something very close to that).

    Lots and lots of info about looking at little known programs and assiantance. I felt that it was great information to have whether I ever need it or not or would even turn out to be eligble. (We know there are lots of crazy "rules" about who is able to get benefits, don't we? ;))

    The website has a very spunky outlook and fabulous artwork, too!
    In fact, I think I might go over there right now for a visit!

    You have worked so hard--big lump in my throat when I say that--you are certainly wise to hope on one hand but plan
    on the other.
    I hope there are plenty of people around you to cover you with hugs :nerd:
    tm
     
  16. Sushi

    Sushi Moderation Resource Albuquerque

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    Note: Posts discussing karma have been moved to a new thread in the Spirituality section: Karma and ME/CFS?
     
    PinkPanda likes this.
  17. tudiemoore

    tudiemoore Senior Member

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    Wow! Wow! Wow, sparklehoof!

    That's all that I can say...

    tm
     

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