The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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On Uncertainty -- how do you manage?

Discussion in 'Lifestyle Management' started by HTree, Jun 24, 2011.

  1. HTree


    Hi All,
    I've been thinking alot about uncertainty.

    (especially after GP said: Would rather tell you you have a terminal illness, that way at least you can Plan/make best of your [remaining] time!
    I certainly do Not want a clearly-terminal illness, but I feel very much this way about Uncertainty: it the Worst part! Or Top-5 worst aspect of this illness. Both on short time scales (day-to-day) and the longer-scales (decade, life plans, etc)

    NB: I am sure uncertainty has been written about somewhere on this forum, but my quick search did not bring up a post-- and I'm tired! So prefer to ramble myself :)

    Though as 3Am is well past my "stop thinking" time... the specific question:
    does anyone have a good resource regarding coping with uncertainty (of illness in general/this illness?)

    A friend who went through, and survived lukemia, has anxiety attacks now about recurrence. There seems to be many books written about uncertainty and cancer recurrence--
    This illness is different of course in (many ways-) and especially-- that most of us ( i think) are always sick, but sometimes much worse, sometimes somewhat better-- and this level/where one is in the spectrum profoundly dictates what we can do day-to-day AND how we make big-life decisions
    "big-life" meaning: Try to work again? Think of having children? Healthy enough to date? How much effort/time to put into treatment/research, and how much of precious energy to use to Enjoy life? etc.

    I think much of this all depends on illness severity, stage of life, age, etc--how one thinks about well as probably spirituality/faith play a role too.
    ( I am largely agnostic in regards to specific religion--but Buddhism is a big part of my life--more philosophy I think-- and I consider myself/feel spiritual...)

    For me at 30, and only last year having to fully stop working, I find myself thinking alot about relationships-- How best to communicate uncertainty of this illness. To family, friends, and to prospective partners.
    e.g. how to think (for self) / talk (to others) about:
    Will I get better (enough to support self)--during my lifetime/during next decade? Will I want to/be able to have children?
    (financial dependency, and whether able/will have children, seem to be the biggest deals for me given gender/lifestage...apparently!)

    I wonder if at baseline, it is "simplest " to assume the worst. Eg, No, I will not be able to earn money--so assume govt/partner must support me; and No, I will not be able to have children..(so tell prospective mate this...)
    While I think it is important to know there is hope (I truly DO feel that way)-- how much to "plan" on it--getting better vs worse-- and whether to Communicate that hope to others--- So Dam tricky!
    At energy level 3-4, not supporting self/not having children are clearly the case now. And I am cognizant that so far, I have slowly gotten worse over time.

    But my immediate hopeful thought: I also have never stopped working--maybe I can conserve tiny bits of energy (once on SSD). To be honest, I am in a phase where I am TOTALLY enjoying life--using my little bits of energy just to see friends, date. Appreciating so so so so wholeheartedly those amazing moments hour(s) of Play! Brings me to tears, that overflow of appreciation!

    But I think It is a bit like I think this little bits of energy will disappear any moment!
    (I can't do this for long though-- I have the blessing of family support as I recover from particularly bad spell/bed boudn...I need to start using the little bits of energy to apply to SSD etc. Will resume seeing specialists again, too).

    Hmm, fatigue rollls in stronger... best wrap it up:

    The general question again: Any good resources about dealing with uncertainty?

    For the most part, my "response" has been: enjoy the moments--whenever I can. But balancing that with building toward potential future is tough. that 's true for everyone, but our Uncertainty is leagues beyond the general uncertainty in life (all living things face)--

    Perhaps a second specific question is: what percent of your little energy (no matter how much it is-- do you spend researching/seeing docs, Vs. "Living" in the present--seeing loved ones, appreciating xyz etc? What percent is work toward better/future vs. appreciating now?

    (is there a magic ratio????????? :D

    (I realize almost all the above presumes not being bedridden 24-7. I have been bed bound but only briefly a few months..My warmest thoughts are with those of us currently bedbound. )

    Thanks for your reading energy, thought-energy, etc (energy to decipher the ramble... :))

  2. zoe.a.m.

    zoe.a.m. Senior Member

    Olympic Peninsula, Washington
    HTree, Those are some excellent and pertinent questions... many of which I've been thinking very hard about lately since I've had a better 4 weeks (almost an eternity!!)... what is the answer to that though? I began reading a book mentioned many places on the forum: How To Be Sick, and it is a Buddhist-inspired take on ME/CFS. Unfortunately, I loaned it to my then very-interested partner who, soon after, broke up with me and took the book to TX! So, I can't comment on more than the skimming I did, but it seems like it might be a good fit. My other guess is trial and error. This entire forum is a testament to the shotgun approach we all ultimately have to take to see if anything helps, and how many bad or worse outcomes we can tolerate, or if they really are a sign of general improvement--I haven't seen that pan out for myself yet!

    Someone quite honestly asked me yesterday, "How does it feel to be looking at 36 and single, never married?!" I don't think she was being rude, she was truly curious. So, all I can tell you is that, at 30, things still seemed like a lot was ahead, and at 35, even "everyone else" realizes the great divide the single/sick people fall into. I do wish you the best of luck with SSDI, it sure didn't turn out the way I expected (I keep saying I haven't worked 5 days a week for 9 years, until I got SSDI, and every day brings with it more phone calls, interviews, forms, etc.), but I also realize that I'm doing everything possible, and there's some satisfaction in that. And there is loss and acceptance and all of those infamous '5 stages.' It's a process, but it sounds like your spirits are still up and you're looking at things with thoughtful optimism and that's a good place to be!

    The US culture doesn't help the lack of attention to chronic illness, everything here is sound-bite, media, and acute-oriented. I often wonder how it is that everyone knows Laura Hillenbrand is a wonderful writer, but so few know she's sick. I wonder how many people are built to live with this illness and uncertainty and expend the energy to write an excellent book(s) on the subject. With asthma, diabetes, autism, etc. becoming almost standard, it's unlikely that everyone can keep their head's buried about chronic illness, but it's human nature to a certain degree.

    Seems like there is a ratio of using only 50 percent of one's energy each day and "investing" the rest back into your savings--if that helps? (and, if it's possible??!!)

    Thanks for asking this question though!
  3. justy

    justy Donate Advocate Demonstrate

    Hi HTree, thank you for your intelligent, profound ramblings. I see a lot of this for me as part of a long and at times very difficult grieving process. My M.e first kicked of at 24, when i already had 2 children, but before i could do anything "meaningful" for myself in the wider world (aside from mothering) i alsways assumed that i would build a career and i tried many times, but due to the M.E i could never manage it -ive never worked full time but have always kept myself busy with courses and a bit of part time work and some voluntary work. Ive been lucky i guess because i had a long remmission to very mildly affected, which allowed me to remarry and have 2 more children. Again i thought when the baby stuff was over i would go out and have that career i always wanted. It never happened.
    I suffered a severe relapse and my functioning level went down further than ever before. Now i am 41 and i realise that yes i have had a good life and raised 4 children, my son is going to be a father this year and i am going to be a granny. For some that would be enough, but for me to realise that at 41 i have never done all the things i wanted to do for myself -and now probably never will is very very hard and fills me with grief.

    I am learning to deal with the uncertainty by not thinking of the future, i practice mindfullness and acceptance, i have become a Bhuddist. It helps me to see that i can be closer to seeing the "true reality of existence" as i am not out rushing about in the world. I also see and experience the truth of human suffering and i have made a stronger connection with nature.

    I try to live within my limitations -but my family find this so frustrating as do my younger kids. I find it horribly frustrating too. Every now and then i allow myself to believe that one day i will have that job, feel my mark other than as a housewife, the reality is to think that is only to prolong my pain. Acceptance is so key, and so difficult to do.
    I practice gratitude and i "put things in perspective" I look at all the things i can do. I can sit on the beach if its a warm day and watch my children swim, i can dead head my roses and grow some veggies (with help) in ,my garden.

    I spend a lot of time during the day on forums and researching, i find it relaxing and it connects me with the outside world. I feel very deeply lonely and alone at times.
    Now i am rambling and ive forgotten the question, but this is hwere your thread has taken me.
    Thank you. Justy x
  4. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi HTree, this is my take on dealing with uncertainty. Even healthy people have trouble with uncertainty, but it is compounded by brain fog, including poor memory. You can't think your way out of uncertainty. Try not to think of an elephant! Did you? The way to avoid it is to focus on something positive, something that empowers you or comforts you. Do something else, and the uncertainty is no longer an issue. I play computer games, watch TV shows on DVD (where I can how it shows to a high degree, using my computer) and engage in advocacy. You can pick your own list. Personally I suggest you try for both comforting and empowering activities - they will each do something different to help.

    There are two times when you need to deal with uncertainty: when society demands it (medical reviews for example) or when your own activity demands it. Most of the time thinking about uncertainty is unhelpful. All other cases can be ignored, although ignoring problem people is a whole other issue.

    Bye, Alex
  5. Carrigon

    Carrigon Senior Member

    PA, USA
    It's actually very simple. We all live in an illusion of safety. Any one of us can die at any second of any day from anything. Really. You can have a heart attack, an aneurism, you can have an accident. Life was never guaranteed to be safe. People die in weird, bizarre accidents every day. We are only made of flesh and blood, at least our bodies are. And they were never meant to be permanent.

    The best way to cope is to just do what you can every day and try not to stress about what might or might not happen. Who knows what's really going to happen. You could have a miraculous spontaneous remission at any second. You could win the lotto, inherit money or property. Someone could come out with a cure. You just never know in life.

    Do things you enjoy that take your mind off worrying.
  6. Nielk


    Carrigon just gave you very good advice.
    The fact of the matter is that there is no certainty in life for anyone but, the sick and chronically ill are more in tune with it.
    W take if for granted that the sun rises every morning, that there is oxygen in the air for us to breathe, that when we walk under a tree, it won't fall on us and that when we cross the street, we won't get hit by a truck who lost his brakes.

    It's human though to worry when we are sick but, we have to try to control it so that it doesn't take over our life. It's not easy to do. The book by Toni Bernhard "How to be Sick" if you didn't read it yet, is an excellent fit for you since you like Buddhism. Besides being a good read, she gives concrete examples of how to cope with different situations that we encounter - through the wisdom of Buddhism.

    You are not alone in your worrying about the uncertainties. I think especially with CFS, there are so many different possible treatments and we all react differently, we have to make decisions that are hard to make.

    I always find that this part of the serenity prayer is helpful and calming.

    Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
  7. #1 get your SSDI claim taken care of, then with some financial security you can pay attention to other things.

    In general, try to stay in the present and take care of things as you need to and try to keep things in balance. At different times you may want to try different treatments, research things on the internet and be on the message boards. When that gets overwhelming or depressing, it's ok to take a break. It's also ok to do fun things or entertain yourself with tv, movies, music, video games, art, or whatever. If you're feeling lonely, it's ok to spend energy on social activities. Advocacy can be a meaningful activity, but again if it gets to be too much, it's ok to take a break.

    My shrink's advice was pretend like you were going to be one of the few who was going to get better. I think that was to help keep your hopes up.

    Sometimes I do a little mental exercise about how grateful I am for the things I have, and how I'm better off than many people. That usually helps put things in perspective and makes me feel better.

    I think developing mental toughness and being able to talk to yourself like you would to your best friend, and cheer yourself up is a good skill to learn with this disease.
  8. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I havent seen any resources dealing with the uncertainty and ME.

    Possibly the answer to that would be to live in the now moment and not be trying to think ahead much, dont dwell on those negatives but also dont go convincing yourself you will be much better then now... be prepared thou stay logical. Be open to any possiblities and focus on now rather then on all the things you are missing or would like to be doing but cant. Focus on what you can do now and enjoy.

    No magic ratio there. Things will even change there for oneself. You need to be seeing doctors at times but we also need to be taking a break from them at times... just go with whatever your flow is.

    I often go throu periods where Im really focused on working on my health, seeing doctors, research... I do that till Im tired of it and need a break and then wont see any for a while after all... there is only so much they can do anyway... and dealing with this illness and all it brings is a long slow process, not something someone can change over night.

    Currently I have a lot of paperwork to get some blood tests, brain scan etc done but its going to be sitting there for at least two weeks as Im having a short medical break after having a few weeks focus on medical things... i choose that not to be the whole focus of my life). There is no time rules with things.. go with your own flow and needs.
  9. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    The problem with this is it leads to bad planning due to unrealistic future expectations. You are trading disappointment in the future (due to denial), for an illusion today. For many of us who have been ill for a long time (and have ruled out other illnesses), recovery is unlikely without the development of new treatments. This might sound pessimistic, but it is realistic. If you do get better, then I don't think you will be bothered at all whether you 'planned' for it or not.

    I think Carrigon gave good advice.
    The fact is that having a chronic illness forces you to revise your perspective on what is important in life. Life isn't a race and it certainly isn't about a list of things 'to do'.

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