My “Summer Vacation”

What I’ve done on my “summer vacation” has not been fun. I’ve had a rough couple of months. Non-ME health issues have gobbled up most of my capacity, and I’m still feeling the repercussions.

I’m not ready to talk about the details of those new health problems, but I can say that I am doing ok now. It’s been a physical and emotional roller coaster. Dealing with these problems has also consumed a great deal of healthcare resources, as well as physical and emotional support from our family and friends.

With so much energy going towards day to day survival, the blog has suffered. So has my activism. I’ve been unavailable for advocacy projects, and I also had to withdraw from the NIH’s Common Data Elements project. I’ve also been forced to delay two large projects that I thought would be my focus in 2017. And I have not kept up with my friends the way I usually do.

But it is what it is. Here are some things I learned this summer that have helped me. Your mileage may vary, of course.

Don’t assume everything is ME. For many years, ME was my only health problem. But additional diseases are basically inevitable as we get older. If you have new symptoms, discuss it with your healthcare provider. Don’t dismiss it as a weird ME thing or complication. Sometimes, those symptoms indicate a new condition, and a careful diagnosis should be made.

Keep up with preventive care and monitoring. Are you getting your mammograms, colonoscopies, pelvic exams, etc? If your doctor recommends regular testing for a condition, keep up with that testing. Even if you feel fine, even if other things are going on, even if you are sick of going to the doctor, keep up with your regular testing schedule.

Don’t assume your non-ME expert healthcare team will dismiss or disparage your ME. I’ve interacted with a number of new doctors this summer, and I expected them to ignore my ME and the way it might affect my treatment. I was wrong. Every doctor and nurse took my concerns seriously. One doctor has been especially attentive to the impact of the new health issue on my ME, and has proactively discussed how we can take that into account.

You’re gonna need help. Getting evaluated and treated for my new health issue has been an enormous drain. Spending spoons on extra appointments meant that there were fewer spoons available for every day tasks like ordering groceries, cooking, and managing errands. Since my husband is disabled as well, there was no one in the house to pick up the slack. I tend to resist asking for help, but we really had no choice this summer. So I got over myself and asked our family and friends. They stocked our freezer with meals for weeks. They came to the house to help us out. And they showed up for us emotionally, too. We would have really struggled without their support.

Triage your life. When a person is brought to the emergency room, a nurse does triage: are you breathing? do you have a pulse? are you bleeding? are you in pain? I’ve been applying the same kind of approach to my life by starting with the most essential questions. Do we have food? Does the dog need to go out? Are the bills up to date? Do we have clean clothes? What doctors are we seeing this week? First, I go through those essential questions and deal with any tasks. Only then do I move on to the next level of tasks or activities. That way, when my energy is completely used up, at least I know that the most essential needs have been addressed.

Self-care is non-negotiable. Keeping a positive frame of mind when your life resembles a dumpster fire is, obviously, quite a challenge. But I learned this summer that self-care is mandatory when you are dealing with a tidal wave of bad news and challenges. Everyone’s self-care is different. For me, it is playing the cello and knitting. I know people who give themselves manicures, binge watch trash tv, or sit on the porch with a book. Do whatever helps you relax. My goal has been to ride the tidal wave without sniping at people, complaining incessantly, or feeling sorry for myself. Some days, I have even managed it!

Be patient. This has been a shitty summer, and it caps off a really shitty two-plus years. I was catching up with a friend the other day, and every time she said “That’s horrible!” I would say, “I’m not done yet!” It’s been ridiculous, but it is also temporary. The one thing I know for sure is that things will change. Maybe for better, maybe for worse. Some challenges might be met and mastered, and new ones may arise. But it’s also possible that we will get a break, and have some time when nothing new goes wrong. I’m not in control of life. None of us are.

This summer has taught me that I can only do my best each day, and hope for better times.

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42 Responses to My “Summer Vacation”

  1. Christine Fenton says:

    Sorry to hear you’ve had a rough time. Really appreciate you sharing your approach to survival & the very sensible advice for everyone to remember other things ‘go wrong’ with our bodies which are not ME related.

    Take care of yourself.

  2. This spring I developed chest pains; the details are on my blog, but the outcome was a huge chewing up of resources, all kinds of new meds problems, a tapping out of my poor husband (we have NO one to help), and three new stents.

    I kept thinking, Really? On top of everything else?

    I have some understanding of what you went through. You have my sympathy.

    • Jennie Spotila says:

      Oh man, chest pains are no joke. What a terrifying thing to go through. I hope you are doing better now.

  3. ixchelkali says:

    Although I read your blog regularly, we are strangers, but I’d like to send you virtual hugs and to wish you healing and strength. I’m sorry to hear you’ve had extra health issues to cope with on top of M.E. (which is quite enough, thanks). I hope that things will be better now and that you’ll have peace to recuperate. You’re in my thoughts.

  4. Rivka says:

    Yup. I can totally relate. I have had to deal w some major non-ME disasters in the last few years. One was last summer. Everything stops as you have to deal with the disaster on hand. We are not spared from them. I’m so sorry you are in the middle of one now. (Thank goodness you have friends and family. So many do not.) I’m thinking of you as you slog your way through this.

  5. LJ says:

    Well said, Jennie! Getting older is not for sissies! You are handling it better!💕

  6. Robert Christ says:

    Hope things get better. Deeply appreciate all your efforts to advocate for the rest of us in spite of all the other challenges you have to face.

  7. Christine Williams says:

    Jennie,

    I’m so sorry you have had additional health issues this summer. Its an effort to stay on top of other health issues and it takes energy and persistence. I hope things will get easier for you and you will have some relief.

  8. Bazia says:

    ❤️🙏

  9. Louise Knutson says:

    Thanks for this great blog post. Always amazes me that u somehow find the will to write.
    U R a brave and ultra smart person. Many of the things u mentioned are so important when dealing with ME and other health issues..i.e. always see your medical professional when new health concerns pop up. Prioritize, ahead of time if possible, the most important things on ur to-do list. If another person in ur household is also ill (disabled) plan, in advance, for someone to be there for them. Find out how much paid help will cost ahead of time, if needed. Down size all tasks to only those absolutely necessary. AND never be afraid (or too proud) to ask for help. God bless you.

    • Jennie Spotila says:

      Thank you, Louise. I like your suggestion of pricing paid help ahead of time. We would have had trouble if we did not have family nearby and had to pay for all that additional help.

  10. Pat Wilson says:

    Wishing you brighter days ahead. Your common sense and eloquent articles always bring a ray of encouragement to me, because you are honest and courageous even when faced with discouraging circumstances. I will keep you and your circle in my prayers.

  11. ahimsa says:

    I’m so sorry you’re having extra health issues on top of ME. I’m stable right now (knock wood) but I’ve run into this kind of thing over the 27 years that I’ve been sick. Having ME does not mean you won’t get other health problems and that really sucks.

    But this blog post is so very helpful! (and well written, as always) I need to keep repeating to myself that self-care is something I can’t neglect.

    Wishing you all the best! Sending virtual hugs and good vibes. ❤️

    • Jennie Spotila says:

      I’m glad you found it helpful. Maybe I’ll get the hang of the self-care habit. Thank you!

  12. Helen Sander says:

    Thank you for taking the time to send out this valuable and heartfelt advice despite all you’re dealing with. It’s much appreciated! Following your advocacy from afar I’ve continually been impressed by your clear analysis, strong voice and perseverance – not to mention the hard work you do for all of us.
    Sending much love from Canada and hoping your new health problems are resolved soon.

  13. billie moore says:

    Whatever it is, I do hope that your medical team and you have it under control now and that you can feel better – from that at least – soon. As usual, your blog takes your own experiences and turns them into good advice or information for others. Never underestimate the help you give, Jennie.

  14. Patricia Fero says:

    I was a high plains drifter with this damn disease. There were times when I had no exhaustion, but always the OI symptoms and the neuroimmune exhaustion. Can you imagine a good 10 years of managing? Advocacy! Trips, testimony. I picked up old novels and short stories. I love to write stories.
    Well, then something happened in March of 2015 after I got over a super bad head cold.
    All the 1980 – 1997 symptoms come back along with some new symptoms. I keep cutting back on doing. I was in the middle of a monograph on early onset of DD in preschool children. I slogged though that with half a brain. I edited and edited again. SO hard to not find words. Right now I am going through the motions. THIS POST reminded me that I am no longer on a high plain, more like a valley and I just have to figure out how to accept less. ACCEPT now with the film UNREST, I feel hopeful and I want to be out there waving flags. DAMN.

  15. Sam Pearce says:

    Bless you for this. I find your blogs so vital, from the overwhelmingly academically rigorous research info to heart wrenching testimony of the day-to-day grind of this condition, but this one really hit home. Thank you for the timely advice, and for the spoons that it cost you. Please keep going, we need you.

  16. Pat Radcliff says:

    Dear Jennie:
    So sorry to hear you are dealing with other medical issues in addition to ME.
    Thank you for sharing your struggle with us. You are a remarkable woman!!
    You have given this community so much of yourself.
    Thank you for what you do–but, more– for who you are!!
    Wishing you better days ahead. There is always hope.
    Peace

  17. Margaret Smith says:

    So sorry you are having extra struggles on top of ME. This ME malarkey is tough enough as it is without other things on top. I hope things turn around for you soon – very soon!

    I hope you don’t mind but your post did make me smile. As usual it’s full of very sensible yet crucial advice, like planning ahead, don’t assume everything is ME etc. I particularly smiled at the bit about you ‘managing to not snipe or complain incessantly’. That’s quite an achievement given all the struggles you are going through!

    But what resonated with me more than anything was the comment about being prepared and having a good support network. Although my husband is officially my carer, he does nevertheless have his own very long list of chronic conditions, including recent serious heart issues. And this year, just a few months ago, he had to have a total knee replacement. The preparation involved in trying to ensure that as a household and a couple we coped with the situation was herculean in proportions. I had to step up to the plate and do what I could to support him as well as look after myself and the effort of just that has left me bedridden for three solid weeks – so far, not yet recovered. And as you so rightly say, if it had not been for the practical, financial and emotional support of family, friends and neighbours I think he would still be in hospital and with me alongside him. A good support network is extremely useful at all times, but absolutely vital when things go pear shaped!!

    Wishing you much rest and recovery and sending virtual hugs.

    • Jennie Spotila says:

      I’m glad it made you smile! I try not to be too snarky on the blog but trust me, I am all about dark humor. I’m sorry you’ve been through such a tough time yourself. Having both spouses be disabled takes ninja level coping skills.

  18. Carollynn says:

    Dear Jennie–So many have written so eloquently here that I can only echo them. Your sharing gives all of us strength and comfort, and my heart-felt wish is that you feel that mirrored back to you now, and always. Sending light and hearing your way.–Carollynn

    • Jennie Spotila says:

      Thank you, my friend.

      • Carollynn says:

        Maybe there’s some humor here–hopefully not prescience: That’s “light and healing” I’m sending! I hope your “hearing” is not among your health issues!

        • Jennie Spotila says:

          My hearing is just fine, though maybe not my reading! I did not notice your typo before! xo

  19. Linda Wiesner says:

    Jennie I am so sorry you have had such a crummy “summer vacation.” I hope things start looking up for you soon. I’m so grateful that despite all your hardships you are willing and able to share with us. I am new to ME as well as to your blog as of 1.5 years, and I can’t tell you how much your blog has helped me. It’s been such a steep learning curve educating myself about ME, and I have learned so much from you, including how to keep a positive attitude.

    I’ve been feeling less hopeful lately, which is not like me, but I attended (remotely) the Community Symposium on the Molecular Basis of ME/CFS at Stanford last Saturday, and I was so encouraged by the tremendous amount of research and progress that is being made.

    Love the tips with this posting. I hope your fall is better than your summer was!

    • Jennie Spotila says:

      Linda, I’m glad to hear the blog has been helpful to you. One of my goals has been to shorten the learning curve for others. I struggle with times of less hope, and that has shifted over the years. There is a lot more happening research-wise than before, so hang on to your hope!

  20. Maureen M says:

    Thanks so much Jennie for the great advice and reminders about health and life issues beyond ME. Your ability to extract lessons and to distil information (also to make lemonade from lemons) never ceases to amaze. I was beginning to wonder what was going on with you, as your blog did seem uncharacteristically quiet. I am glad you have at least some extra energy to be in action once more. Glad too you have met some caring health providers who acknowledge ME and its impacts — the negative reaction we expect from providers is often enough to prevent us seeking routine and sometimes even emergency care.

  21. Tina says:

    Thanks for your inspirational words. I needed them today. I thought I was reading about myself. The “two-years” and the “summer” mirror the downward timeline in my own life. It has been hard because my life feels like a Greek tragedy and it is playing out in front of my 14 and 16 year old daughters. I feel completely inept most days.

    I hope as the summer comes to a close that your story takes a turn for the better. I have the same feeling about ME in general, that it will take a turn for the better. I will continue to follow your journey.

    • Jennie Spotila says:

      Oh Tina, I am very very sorry to hear this. I feel like a country music song most days, given the list of things going wrong. I hope better days are swift in coming for you and your daughters.

  22. Kathy D. says:

    So sorry to hear about your health problems, but am glad you have found health care providers who understand about the ME issues and are concerned.

    Your blog has been invaluable. I tell people with ME/CFS all of the time to read it.

    There is promising research happening and Ron Davis and Jose Montoya are among the top research scientists who are forging ahead. That Stanford symposium recently was amazing.

    Also, I agree with so many of your essential living maxims above. I do triage all of the time. There are about eight things I must do; the rest can fall by the wayside. A neighbor got annoyed that I gave her a container of dusty paper clips! I said that is not a priority in my life. Nope.

    You are very right about self-care. I try to see doctors and get tests, but it takes all I have. Some tests and treatments I get, the other things are lower priorities. Dental health! I do everything I should, but don’t see a dentist regularly. But I take care of other things.

    Have to travel further than I have in 11 years to see a doctor, will have to rest before and afterwards, and take a car service.

    All of your advice comes from experience, I know. Some days I feel like I’m treading water, other days like I’m putting one foot in front of the other and going as far as I can, then stopping. Binge-watching dvd’s and reading mysteries are my distractions, also TV news.

    Anyway, I hope you are better soon. It is so good that you have family to help. (And I must add that frozen dinners and canned soups with frozen vegetables thrown in do the job for me when I can’t do anything else.)

    A neighbor who has helped me a great deal is now sick herself and I feel badly that I can’t do more to help her, but I do what I can.

    Best wishes for your health and your spouse’s.

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