Pretty Much the Worst

One of the worst things someone said to me recently about my disability was:

With all the stuff you’re doing, you work just as hard as someone working full time.

The charitable and loving way to interpret this statement is: “You’re really doing a lot. I’m worried that you are hurting yourself and not getting enough rest. Please take care of yourself.” An even better follow up statement would be, “What can I do to help you?”

But there’s another way to interpret this statement: “You are apparently able to work, since you’re basically doing as much as that already. You must not be disabled any more.”

Whether this second message was intentionally sent or not, it is deeply offensive to me as a person disabled by ME.

mjaxmy0wodg5ogq5odflm2jizmm1I know I don’t look sick or disabled. I know that I have a lot on my plate, between my advocacy and dealing with the realities of our two disability household. But to say that I could work full time?  That’s basically gaslighting or willful ignorance.

Since my husband had a stroke more than a year ago, I have been balls to the wall every day. That doesn’t mean eight hours of some kind of productivity, by the way. It’s more like a frantic few hours trying to get urgent tasks done, then triage everything else. People might see the effort I expend, but they don’t see what it costs.

I’m going to be bare bones honest, here. I don’t have the capacity to see my friends. I’ve had multiple near-fainting episodes in recent weeks. We rely almost exclusively on pre-prepared meals. We can’t keep up with laundry and other household tasks. I’m afraid to lie down for rest breaks because that usually turns into unintentional three hour naps. The pain and post-exertional malaise feels like I’m carrying a five story building on my back and shoulders. Every evening I collapse onto the couch, barely able to pay attention to the television. Most days, I’m barely making it.

Almost everything I do, I do out of a sense of obligation. Family obligations. Adults-have-clean-houses-and-healthy-food-in-the-fridge obligations. Maintaining this blog and participating in advocacy. Offering emotional support and patience as my husband continues to kick stroke rehab ass. Supporting my friends in their difficulties. Oh, and attempting to manage my own health.

My husband has no problem setting aside obligations in order to heal. A saner person than me would have given more things up a long time ago, and I don’t really understand why I haven’t. But if you look at me or my life and think, “She could be working,” then you are not SEEING me.

You are not seeing the physical pain I deal with every day. You are not seeing the fog that replaces my brain as the day goes on. You are not seeing the force of will that is required for me to remain upright most of the day. You are not seeing that every task, every routine activity, every action that you apparently take for granted, requires intense concentration and determination to track and ultimately complete.

It is so very tempting to imagine singing my theme song (NSFW language) as I exit stage right. But I choose, every day, to live a life that is bigger than the four walls of my house. That’s why I stay in advocacy, and why I try to stay on top of all the obligations and aspects of living a normal life.

But if you think that translates into being healthy enough to work full time? Please. You are not paying attention.


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42 Responses to Pretty Much the Worst

  1. Christine Fenton says:

    I really appreciate the information you provide & share it, making the source clear of course.

    We all need purpose in our leaves, whether confined mostly between four walls or not – you have chosen a constructive, outward looking, informative purpose which is of use to others.

    Other people do such things in their ‘leisure time’ – after work/household chores/household business etc etc.

    Oh, to have the luxury of a day which included ‘rushing’ from home to work to a social/fitness event whilst maintaining the home & family, have an occasional really late night & still be able to survive the following day’s routine whilst feeling ‘rough’ but still functioning.

    We have been robbed of these choices and opportunities – do people with no concept of the illness wish to rob us of all autonomy? – the autonomy which enables us to hold onto our sense of self as a human being with a purpose in our adapted & recreated new life – the challenge to change we have risen to so successfully & so strongly that we can still hold onto a positive purpose for ourselves?

    We cannot put ‘experienced ME heads on inexperienced non-ME shoulders’ & out of caring for others, we wouldn’t wish them to have to experience the pain, the total unreliability of our bodies, grief of our lost education/job/social life/choices, denial from friends/family/medics, social isolation then slowly the regeneration process & subsequently creating an inner core of strength – all of which are parts of the process experienced as we learn to live constructively with this disease.

    It would be cruel to wish this on anyone – but, just sometimes, that less generous streak in me would like to ‘enable’ the dissenters to have a small taste of the lives we lead!

    Thank you for all you do!

    • Jennie Spotila says:

      Oh, to have the luxury of a day which included ‘rushing’ from home to work to a social/fitness event whilst maintaining the home & family, have an occasional really late night & still be able to survive the following day’s routine whilst feeling ‘rough’ but still functioning.

      This is SO true! I would settle for the “luxury” of being able to drive a car without repercussions!

  2. Kaye Fox says:

    I really don’t know how you do it all, but I understand totally that you have to keep going and not give in because then it is over. There are no limits to what we can and have to do to survive, while being in constant excruciating pain that no one could ever understand unless they were in your body.
    I have this fantasy all the time that we could switch bodies with people for just one day and see how they would react to everything we feel.
    I have learned from having this disease for 25 years to never judge. But I think worse than that is I still even judge myself if I have just a couple of good hours.
    I try to tell myself that if I can’t really wrap my head around that , I don’t know how I can expect someone healthy to.
    Just know that you are way stronger than most people and that we will never ever really be given credit or understood for all that we bear.
    Just know that one person thinks you are a hero!

    • Jennie Spotila says:

      Thank you so much, Kaye!

      But I think worse than that is I still even judge myself if I have just a couple of good hours.

      This is a really good point that I didn’t cover in the post: the Dance of Self-Doubt. Like you, I begin questioning myself after one good day. And when someone says something like this to me, I question myself. Can I work? Am I exaggerating? Am I better? My husband does this to himself, too. He had a few really great days, and I could hear the I-can-go-back-to-work wheels spinning in his head.

  3. Cheryl Boese says:

    Thank you for the truth, and for a good laugh ( your theme song). You are a warrior! You also put into words what I have been struggling with in these last 19 months of disability, to “live a life that’s bigger…” My feeling lately is that this life is so very tiny that it could very well disappear. My attempts to make it bigger are often met with the punishment of PEM. I am inspired to continue because of people like you!

    • Jennie Spotila says:

      Keep on keeping on! I have been known to sing that theme song at different points in my day, much to my husband’s amusement.

  4. Cecelia says:

    I so appreciate your writing in all your blogs. This description of the daily struggle is terrific.

    I overdo also to keep a meaningful, useful life but that too involves a lot of omission in terms of seeing friends, because this is one of the activities which require pushing my brain speed up to a compatible level for conversations. The more I can do things at a slow speed instead, the more I can have some kind of decent day, but I don’t have this option for everything.

    Staying standing, staying functional can be critically hard–often. People don’t realize without seeing the blood pressure log and knowing what very low pressures and near fainting in an ongoing way even feels like. If this low oxygen state isn’t creating more brain damage, I would be very surpised. That is what bothers me most, more than the extreme strain of it.

    Also, having brain fog in which my ability to comprehend what I am perceiving continually lags behind when I should know in order to be safe and functional–that is an added stress that people don’t know about. The whole brain-body coordination is out of sync which creates a lot of stress– this then causes even more fatigue.

    I have gotten as skilled as I can in managing my condition, so much more so than in the first years. But, I want to say to people who don’t have this condition, “Believe me, it is an alternate reality!” STILL, I am grateful for whatever I can manage. Negative thinking is a threat which drains energy extra fast, so I try to release it no matter what is happening. My house could have burned down but I will be looking for inner peace. I can’t afford conventional feeling about the limitations, strain and physical pain I have had for decades. Depression isn’t something I can afford even though it would be natural to have it (and sometimes really do have). Self pity is another destructive poison. So the resulting somewhat positive feeling outlook I share with others gives them the idea that things are ok when they are not. But I will not sabotage my own experience of life in order to play an expected emotional part. Yet, like you, this doesn’t mean that daily life is not often quite a struggle.

    Thank you so much for sharing with us what your daily life is like. I hope you and your husband enjoy whatever you can when you can!

    • Jennie Spotila says:

      Also, having brain fog in which my ability to comprehend what I am perceiving continually lags behind when I should know in order to be safe and functional–that is an added stress that people don’t know about.

      This is a really good point that I had not thought about before. The comprehension lag makes it much more challenging and exhausting to be out in public. People expect us to move at a normal pace, and when we don’t it increases the awkwardness of an interaction. I know I struggle to keep up the world physically and cognitively when I’m out, and it’s very hard.

      • Cecelia says:

        Yes, we are out of phase with normal. Pushing to get up to that normal speed is expensive in the day’s energy budget. If getting up to speed is not possible, as it often isn’t, there is not only more fatigue and in some cases danger in being out of phase, there is also a sense of unreality–that is, being in a different reality, a weird world. It can be a relief to have some people who can understand, while at the same time, there is also a value in being able to “pass” as normal. The world being what it is, “passing” for normal is often far better than being categorized as disabled and out of it.

  5. Linda Sleffel says:

    I woke up thinking about all the things I need to do, want to do, am somewhat committed to doing–that I don’t see how I can possibly do. And I don’t live with pain.

    You’re a heroine just for getting through a day, and you’re many times a heroine for all the other things you do. I’m really grateful to you for the blog.

    My mother used to say, ‘We have to keep on keeping on.” Bless you for keeping on.

  6. Cindy Downey says:

    Hi Jennie,
    Thank you very much for this. The stigma of this disease, including the offhand ignorant remarks is horrendous. ME is not the only invisible disease. There are many others: MS, diabetes, liver failure, cancer etc., etc., etc. So to say, “You look great, why aren’t you working?”, is an ignorant comment. It’s a completely baseless argument, to say if someone looks fine, they must not be sick. People are very narrow minded about what a disability is. It seems that if you’re in a wheelchair, or use a cane, then the public, recognizes that as a disability, otherwise, they are often clued out. People don’t seem to think about systemic disabilities.

    And, as for doing lots, people see us for one snapshot of our day, or our week, month etc. They assume we are out and about ALL the time like they are, because they see us once in a blue moon. They don’t see us when we need to recuperate on the couch, or in bed. They don’t see that we are trying not to faint in a grocery store line up. They don’t see that we have to take breaks every few minutes and lay down, so we can stop feeling light headed, or stop our heart from racing, or our muscles screaming out in pain. They don’t see the millions of ways that the myriad of ME symptoms halt us in our tracks.

    What employer would want an employee who is off sick with colds and flues all winter because their immune system is wonky? What employer would want someone who feels faint all the time when they sit upright or stand? What employer wants someone who needs breaks every few minutes because their cognitive, and/or physical capacity is tapped out?

    The stigma of this disease: the ghastly, dismissive, disdainful attitudes, the truly bizarre expectations, and comments; I bet people’s experiences about this one ME issue are endless.

    For an objective assessment of work/rehabilitative potential, the Canadian Consensus Criteria is a good tool for people, page 34:
    I know you know about this very valuable work. Page 34 talks about the functional limitations and restrictions: lack of endurance, physical and mental fatigue, poor concentration, memory problems, chronic pain, cumulative fatigue, unpredictability of symptom dynamics, etc.

    Lack of endurance and, unpredictability, are exceedingly troublesome. The average healthy person can depend on their mental and physical stamina and endurance to get them through a day. To go to work, the gym, go shopping, cook dinner, entertain friends etc. They don’t feel like they have “the flu, a hangover, and have run a marathon” just because they’ve gotten out of bed in the morning. We do. Now try feeling like that, and adding in caring for a sick spouse, keeping the house going, and advocating for change – it’s a Sisyphean task everyday, and the only way to do this is to come and go from all of it. And, that’s what people don’t see!

    • CFS Facts says:

      Precisely, Cindy.
      Just before I lost my job, just getting to work required an hour with my head down on the desk before I was able to focus enough to do anything, and I’d spend an hour at a time in the ladies room with digestive distress so painful that I was often on the verge of passing out from the pain.
      Things got worse and I started feeling on the verge of passing out all the time. I was applying for jobs, convincing myself that I would magically be able to work a total of 8 hours out of every 24, if I were allowed to work from home, but as soon as I asked about working from home, interviews ended.
      Finally, I was on a phone interview with a lawyer who knew something about ADA, and when I asked about working from home, he asked why. OK, here’s my chance to impress him with my diligence, this is not because I’m trying to avoid work, it’s because I have to lie down because of the dizzy spells.
      He apologized that he wasn’t going to be able to hire me, but gave me the names of a few ADA cases to read, one of which asserted that since it was not possible (pre-internet) to do 100% of any job from home, anyone who needed to work from home for whatever reason was not “reasonable accommodation.” Unfortunately, the Disability judge didn’t think the ADA cases applied to Disability court, so even though every one of them said the accommodations I needed were far in excess of what ADA said I could ask for, the Disability judge kept insisting that I just had to try harder and eventually someone would hire me on my terms. “With your qualifications, anyone would be thrilled to hire you.”
      I finally stopped wasting time when I applied for a job with the agency that finds jobs for the disabled. I can relate to the disabled because I am one. Files can be messengered from your office to my house, and I’ll even pay the messenger service; it’s possible for me to do the work from home and it won’t cost you anything extra. Even they sent me a letter telling me that I was too disabled to work, good luck convincing anyone to hire you when you’re this sick.
      Then I finally got a doctor to sign the State Disability forms (you can apply for Social Security Disability without a doctor’s signature), and the State Disability judge couldn’t wrap her head around it that I don’t need to lie down 5 minutes out of every hour, I need to lie down constantly. She waved her arm toward the State office behind the hearing room, “lots of these employees are disabled people who need to rest for 5 minutes per hour” and my advocate tried again to make it clear that he had worked for State Voc Rehab, and there was absolutely no way he could have convinced any state agency to hire someone who had only 2 good hours per day (including time used to get dressed and take the bus to/from work) and needed to lie down in order to be able to concentrate; a couch in the ladies room for 5 minutes out of every hour wasn’t enough for me, I needed a bed at my desk. I was feverish and nauseous — first thing I’d said to the judge was “can I have your trash can?” — but she assumed this was a 24-hour flu bug and not the way I woke up every day for weeks.

  7. Sue B says:

    Jennie, is there some way you can get some help, some home health aides or something like that? It just hurts my heart to see you pushing so hard, knowing what the outcome is going to be. You might sit down and prioritize everything you do and just skip the low level stuff. Or prioritize according to what you have to do yourself ( something only you can do) versus something that could be delegated. Please, please take care of yourself. Somehow. Don’t be afraid of those three hour naps.

    • Jennie Spotila says:

      Thank you, Sue! I am the master of skipping the low level stuff. At least I skip doing it. The trick is to skip worrying about it too. We do have some help, including my Dad bringing us dinner once a week. I dream about having a housekeeper who needs no supervision! I wish there were laundry services . . . although maybe there are and I just haven’t found such a thing. Hmmm, I will look into that because the one thing that really bothers me is the mountain of dirty laundry.

  8. We CHEAT.

    Constantly. At everything we possibly can.

    I clean a bathroom in a 5-min way only when I absolutely have to.

    I haven’t cooked in weeks. The husband does the food shopping and the kitchen cleanup – I do NOTHING. He’s well, and I could burden him with more, but I choose not to, and to just live with the pits as far as standards (since he doesn’t seem to notice or mind).

    I can’t leave the house; when I do, I pay. I have a bunch of friends I exchange a few comments with online – on a rotating basis – so I don’t go bonkers.

    I use my limited energy 1) for absolutely required family things, and 2) for writing. Period. If possible.

    It took me 15 years to complete my first novel with a CFS main character, Pride’s Children, and it may take me as long to do volume 2 of the trilogy at this rate! I don’t care – writing keeps me from being the most depressed person on the planet (hard on the family) and is MY form of advocacy.

    I don’t even count the things I can’t do, and have permanently removed from my life, such as being able to go outside and pull a half-hour of wees.

    You are doing so much advocacy – I can imagine how it happens, by you dragging yourself through the necessary parts, using energy you don’t have in stolen moments. It accumulates – if that’s all you do.

    You couldn’t even get to a full-time job on a regular basis! Much less do any work there!

    And for you to have to help your husband, too, that’s simply heroic. Of course you eat pre-prepared meals.

    You cheat everywhere, too. I applaud your choices.

    Invite that person to spend the day with you COMPLETELY SILENT and without bothering you. Including watching you nap.

    The difference between us and normal is so huge it’s unbelievable.

    • CFS Facts says:

      People just don’t understand that pre-prepared meal cheat is a necessity. Not only was I sick when I was eating no preservatives, made from scratch every day, I was sickER because it meant weekly trips to farmers market for fresh produce, and a second weekly outing to the grocery store for the fresh meat, and an hour of standing and chopping and stirring. For me, healthy food is the worst thing I can eat, because it pushes me into energy deficit.
      Or I can go online and order several cases of shelf-stable Hormel Compleats and Velveeta pasta meals, add half a can of veggies, and be in and out of the kitchen in 2 minutes, with only one monthly trip to the supermarket for the stuff I can’t mail order from Walmart, which keeps me within my energy limits.
      When I stopped cooking 3 healthy meals a day and relied more on “preservative laden junk” was when my health finally stopped going downhill, levelled off, and eventually started to improve.

  9. Anonymous says:

    Wishing I could provide a personal assistant for you but more than anything I wish we all had more spoons!!
    I also wish we had more understanding from others which would hopefully translate into more hands-on help!

  10. Kathy D. says:

    What a revelation of the truth about how you and others of us live. It is an accomplishment just to get through each day. My goal every day.
    Give yourself kudos for doing that and everything you do.

    My doctor told me that people don’t believe we are sick because we look fine.

    However, we can’t overdo it. Rest when you feel awful; tasks can wait. I
    say this because I did faint in 2003 and broke my ankle. Then in December 2013 I went outside against my inner voice which told me I should not do that — and I tripped on a broken sidewalk around my corner and broke my arm.

    So, listen to your body. As someone who puts house-cleaning on the lowest rung of priorities, I know that has to be so. We can live without perfect environments; just do what you can without straining yourself. It isn’t worth the energy to do everything.

    Yes, and I have gotten no-frills meals down to a science. I guy canned bean soups and frozen Amy’s meals and put frozen broccoli and yellow summer squash on top and cook. Voila–a healthy meal. It also cuts down on dish-washing.

    I think we all have to prioritize what is most important to us and let other things drop down on the to-do list. If we have to write or read or pay attention to a relative of friend, then we should do it.

    I know my stamina outside the house is 3 hours or, on a good day 3 1/2 hours. I just can’t do more. Sometimes I just go to the library 2 blocks away, then Whole Foods and come home. It’s enough. When I get home with groceries, my legs feel like jello.

    We all appreciate the advocacy work and blog you do so well. But give yourself a break and do what you can but try to stop before the PEM sets in. Let some things go.

    By the way, just read a post by Jen Brea that 55 congresspeople have signed onto a letter to Francis Collins calling for research for ME/CFS.

  11. Kellie Nicholson says:


  12. Gina Bettor says:

    Jennie after enduring my third radiation treatment today I don’t have the energy to write how much I agree with you and support you so I am just letting you know how grateful I am for your advocacy! Your a beautiful person and never let anyone make you feel you owe a response to such ignorance. ❤

  13. ron lakey says:

    Thank you so much for what you are doing. You explain and describe exceptionally well. It helps me to know that there is someone out there who really does understand what I face every day. You help me to keep that bit of hope that I still possess and keep on truckin’ as best I can. Thank you, Jennie!

  14. Nancy Blake says:

    To be fair to your friend, it sounds like she/he is saying that you are already doing a full-time job, which seems like an understatement! And not at all that ‘therefore you should get a job’! And if someone were saying ‘therefore you should get one’, they are not your friend!

    Whatever, ME/CFS requires that we reverse our thinking (and definitely junk trying to live up to cultural expectations on women…the ‘clean house and putting our own needs last’ scenario).

    Exercise isn’t good for us, it poisons our system. Exertion must be minimised with the same commitment required of a person with life-threatening allergies to avoid what might kill them.

    Rest is essential treatment, and requires the same level of commitment as one would have to keeping up taking a life-saving medicine on a regular basis.

    Bur aren’t we supposed to ‘fight the disease’? Yes, absolutely.

    What is it that fights the disease? It’s our immune system.

    What does our immune system need to fight the disease? Energy.

    So what do we need to do to fight the disease? Use as little energy as possible for anything else!

    What you owe to the people who care about you is commitment to getting better, not getting worse, and that means being ruthless about the above. Anyone who doesn’t know that this is necessary is uninformed; anyone who objects to your running your life on these principles is doing you harm, intentionally or unintentionally.

    This is likely to include yourself…you are an extremely courageous, determined and self-less person, who like most of us has internalised society’s expectations of what women should do. The fact that ‘selfishness’ and ‘laziness’ are absolutely required if we are to have any chance of improvement or recovery is a real challenge for us and for those around us.

    We need to go through every activity and work out ways to do necessary things with a minimum of physical effort. Rather than trying to ‘keep upright’….with orthostatic intolerance? Please….! fight for your right to lie down! Rather than trying to appear normal, we need to get a wheelchair, to advertise and validate our disability and our need to sit, not stand. When we go out to see friends, we need to insist on a place where we can relax, on a settee or in a high-backed chair. We are more likely not to be able to go out..our friends will have to get used to the fact that they need to come to us, and when they do come for a short visit, we are going to be lying down. With our head supported.

    We must resist temptations to lift, polish, scrub, dig, or pull weeds. If people ‘would do anything to help’, hand them the list! And if they ‘don’t know what to give you’, give them a list of labour-saving tools.

    The paradox is that the more ‘selfish’ and ‘lazy’ we can learn to be, the more we will gradually become able to do…getting over ME/CFS is truly ‘playing the long game’!

    Jennie, you’ve heard all of this before from me…I just think we all need this peptalk from time to time. I salute you, and am so grateful for your work!

    Also, link to my recent article:

  15. Chris Williams says:


    I’m sorry you have so much on your plate to deal with. You are amazing to be able to do as much as you do to help so many understand what is really going on re: research and policy for ME/CMS. I often feel guilty that I am not doing more on the CFS/ME front, but when I got sick 8 years ago, I decided that I could not devote all my time and energy to the illness. Still, its probably 25% of my time; could I do more? Of course, but I’m 64 with aging family members that need help and a husband who has been pretty supportive but still wants to enjoy life when we can. Keep up the good work – one benefit to working for our community is having people who really get it, so you don’t have to try to explain.

    Take care of yourself,

    Chris Williams

  16. Belinda says:


    Firstly, we thank you from the bottom of our energy-depleted hearts(and bodies) for all you have done and continue to do on behalf of the ME/CFS community! We are so very appreciative and fully understand the consequences of overdoing, yet we must do the things we feel we have to do to keep our sanity.

    Living with the challenges of this invisible illness, where symptoms can change on an hourly (or minute) basis, (insert your theme song here) is overwhelming! But as a household with 2 disabled persons, (both my spouse and I have ME/CFS)…. I totally relate to the “balls against the walls” daily regime.

    My mountain of laundry is presently climbable….and has been for some time. Thank goodness our linen closet is fairly large! And I have found paper plates to be worth their weight in gold. Loading and unloading the dishwasher puts my HR above my AT. And you can get plates to “change with the seasons” for a little added spice to our otherwise dreary home bound status lives!

    And love your cards….indeed I think we all try to “fake wellness” and attempt to be among the normal healthy, if only for a brief time. Have you seen the one that’s says “I don’t look sick?”…..well, you don’t look stupid!”
    Thanks again for all you do. Your advocacy is making a difference!
    Best to you and your hubby.

    • CFS Facts says:

      Exactly. I can’t avoid creating some dirty dishes, but paper plates/bowls and plastic cups substantially cuts down on how often I have to load the dishwasher.
      And right now I’m dealing with some weirdness causing bladder leakage when I sit up and frequency/urgency — every 10 minutes I “gotta go” but then it’s only a tablespoon of liquid, not worth the effort of hauling myself upright a couple dozen times a day. Screw the environment, I bought a case of Depends, and a friend who’s a nurse told me about disposable bed pads that will absorb even more liquid so I don’t have to change as often.
      With any luck, this is typical short-term quirkiness and in a few weeks it’ll go away and I’ll have some new weird symptom. Since the bathroom trash can is barely large enough to hold one diaper, I put a big trash bag in the tub to collect them. One of these days I’ll feel well enough to toss the trash bags out the window so I don’t have to carry them down the stairs to take them to the curb. And when I do, I know I’ll get some nasty comment from the *itch next door about tossing trash out the window……..

    • Jennie Spotila says:

      Thank you, Belinda! Two disabled people is no joke. We all find little hacks like paper plates etc. i find it very challenging to let go of the “right” way to do things, though.

  17. kathy d. says:

    The part about comprehension or getting things done quickly just hit home for me.

    I was talking to a friend a month ago and stopped walking as we were going down a hallway. Someone else (who notices everything I do) said sarcastically, “Keep moving. Can’t you walk and talk at the same time?” And while usually I try to be calm and explain, I said, “No. I can’t. I really can’t right now. I just got exhausted and can either walk or talk.” It really hit me at that moment. It was at night and I’d already been out past my stamina period.

    But I decided that I’d be adamant about myself and be clear.

    I don’t know if other people know people who notice everything one does and says something. So I’m avoiding running into that person and no longer email. It’s too bad, but sometimes we have to set the tone and be forthright.

  18. Maureen M says:

    Once again Jennie — thank you, thank you, thank you. You have a way of analyzing and then saying things that speaks so clearly for all of us. Your bare bones honesty paragraph just about made me weep … like a mirror into my life — starting with the deep loss (not usually consciously expressed), “I don’t have the capacity to see my friends.” … and ending “Most days, I’m barely making it.” And yet, you — and we — carry on … advocating when and as we can … and since we can’t do that and see friends or cook and clean — trying desperately not to be pulled down by the loss of social contact, the chaos, disarray and ‘dust bunnies’ that are our daily life.

  19. Cecelia says:

    So very well felt, understood and expressed, Maureen. I thank you too, as well as Jennie!

  20. Chris F. says:

    You are an inspiration. I SO want to send this post to my adult son in the hope that he and his wife will begin to ‘see’ me and recognize my limitations. What commitments I have take all my energy on most days, and like you, many days I’m barely hanging on. I’m afraid though that my limitations will forever be resented, and my sending this post to them would only provoke ridicule and criticism.

    Please know that the things you write about are so beneficial to my psyche. And I do so appreciate the way you hold feet to fire in the interest of promoting the research that surely will lead to a cure one day. God bless you, bless your husband as he heals, and bless your brave and unceasing efforts on all our behalf!

    • Jennie Spotila says:

      Thank you, Chris, from the bottom of my heart. I am so glad you find these posts helpful. I am very sorry your family is not supportive. I could not make it without support from mine.

  21. Cecelia says:

    Here, here! I so agree with you, Chris–what you said about Jenny. And thank you for what you said about your experience, as so many of us share it.

  22. Daveo says:

    Thanks for this. As a 46 year old guy 3-1/2 years into CFS/ME and Fibro, i am still fumbling through the pea soup fog and trying to figure out what my new life feels like while honouring and putting “old me” to rest (he was fcking awesome!). Lost 2 years to prescription meds and tapering off, spent everything i have on alternative treatments (name it, iv’e tried it) and supplements. My only relief is CBD/THC tinctures, sitting in hot mineral water or getting Thai massage (they stretch you out and wow feels so good for the hour or so). Finally realizing this is what i’ve got to deal with and i can’t do it alone (you all know how relationships often evaporate when you constantly cancel stuff) and finding joy of any flavour is so hard now and when you are happy, people wonder why you are able to be happy for a bit yet not be working full time or whatever.

    Anyhow thanks for writing this and reminding me im not alone nor insane (yet).

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