My Worst Year: Theda and Thomas and Me

Trigger warning for discussion of suicide.

This summer, two well-known ME patients, Theda Myint and Thomas Hennessey, took their lives.

I didn’t know either of them personally. Theda was well-known through her “Help Theda” facebook page, and was a very severe sufferer, confined to bed. Thomas was well-known for his ME/CFS advocacy – he was the founder of RESCIND and devised our awareness day. He was dealing with very severe pain on top of decades of ME/CFS. Because I wanted to be supportive in a small way, I had liked Theda’s page with my blog’s facebook page, and so she would have more fans, with my personal account, too. But, I confess, I had configured the settings so I wouldn’t see her updates in my feed unless I went looking for them specifically.

I did this because I couldn’t bear to come upon them unexpectedly. And the reason I did this is something I’ve never talked about on the blog, because it’s extremely painful to think about and talk about. But for Theda and Thomas’s sake – for the sake of all of us who have ME/CFS – I feel like this is the time.

***

In fall 2007, I pushed myself to go to too many meetings for work and had a crash. That same fall, my total insomnia began. By Christmas 2007 I was bedridden. In spring 2008, Chimp landed a new job here in western Pennsylvania. We were then faced with the problem of moving me from California. Commercial flight would have been impossible, and air ambulance charters cost well into the five figures. We were fortunate to get a charity air ambulance flight from Grace on Wings, which is based in Muncie, Indiana, where my mom’s family happens to be from. We moved me to Muncie that spring, expecting we would then take me to Pennsylvania. But after the move, I deteriorated.

I am not one of those people whose ME/CFS was severe from the very beginning. My functioning went down over time, stair-step style, after each crash, and each time I’d been able to adjust pretty well. This worsening, which took me from mostly bedridden to entirely bedridden, I didn’t adjust to well at all. I’m not sure how you would; it’s enormously depressing to be bedridden. At every previous point, while I’d had to prune off more and more activities, I’d found ways to adapt. But now I was no longer in the sick-but-functioning category. I was just sick, every moment, and needy, there was no diverting my mind from how ill I was, and I really started to feel the illness psychologically in a way I never had before.

This might seem like a small thing, but I think it represents how great the impact of the disease was at this point: becoming that ill made my sense of humor disappear to those around me, because I no longer had the extra energy to say any of the funny things that came to mind. So they stayed inside me, and it meant I lost a way of relating to Chimp and my mom that had done a good deal to relieve the psychic pain of being so ill. Because I couldn’t joke, and didn’t have the energy to explain why, I was treated with grave seriousness, and that too was depressing.

In California, I’d been able to walk to the bathroom every few days to take a shower. In Indiana, I couldn’t walk across the room – all I could do in terms of getting out of bed was to use the commode next to it. I now needed round-the-clock care, more than Chimp could provide and also fill the demands of a new academic job. My mother works from home, so the decision was made that Chimp would go to Pennsylvania, and I would stay in Indiana.

Chimp found a house and moved out to Pennsylvania that August. We all knew it was the only way matters could be successfully arranged, but it still broke my heart to be separated from him. He emailed me every night, so I’d have a message in my inbox from him when I awoke, even though I couldn’t always reply, not having the energy to to type or to be on the computer more than a few minutes a day, and he drove the five hours to be with me every weekend that he could.

My deterioration was such that we hadn’t been able to get me a new doctor in Indiana. An Indianapolis-based physician who claims to specialize in ME/CFS agreed to take me as a patient, even though I wasn’t able to travel the hour to see him. Chimp had phone conferences with him every couple weeks, sometimes every week, that fall.

On election night 2008, my sleep drugs – I had been using doxepin or trazadone – failed. That first night I thought it was just the excitement around the election, but it quickly proved not to be so. Without being able to sleep more than an hour or two a night, and some nights not at all, I deteriorated further. We threw Ambien and Vistaril at the problem and found that both caused more agitation than they did sleep. Around the same time, I opened a new bottle of B12, not noticing that it was 5000 mcg rather than the usual 500 mcg, and that set me up for weeks of GI pain and tachycardia.

The specialist’s ideas of how to help me were to get me on Xyrem for sleep and give me human growth hormone. So we began those. Between the compounded side effects of them and not sleeping, things started going very badly.

The Xyrem was no help for sleep. It’s not supposed to work miracles the first night you take it – supposedly you get accustomed to the drug, and over time you start sleeping longer. That’s what should happen for a person with a brain with a mostly-intact sleep function. The first time I took it, I think I got six hours of sleep, and it never gave me that much again. I was not in a situation where I could wait to start sleeping better – I needed to do so right then. I needed to have done so for weeks prior.

Xyrem is also loaded with salt, and I had long since been sodium intolerant. As a result, it worsened the tachycardia from the B12 overdose – on five consecutive days, I measured my heart rate on awakening at 96, 117, 128, and 132. The stress of the tachycardia weakened me further.

After about seven weeks of not sleeping, my body was starting to shut down. I stopped being able to roll over. At some points I needed to be spoon-fed. My legs were tingling and painful, and sometimes I couldn’t feel them at all. I was having trouble swallowing. My pulse was hovering at or about 100 bpm, and I was having episodes of it suddenly accelerating to 160 or 180 beats per minute. My thinking was becoming increasingly incoherent: I was convinced that one of my eyeballs was bulging out more than the other. I felt a growing sense of unreality.

Strange and frightening new physical symptoms began emerging. My hair started falling out. My skin was incredibly greasy. I was having trouble focusing my eyes. My ears were ringing crazily, and I had a new kind of headache across my forehead. I looked up the side effects of HGH and it became clear that I was in serious danger, possibly so far down a perilous path that we had already signed my death warrant.

Eventually all this necessitated taking me to the emergency room.

My memory of that trip is as if it were yesterday. It was the week before Christmas. I was loaded into the car, and I remember watching the headlights play on the house as we backed out of the garage, driving through the dark streets of Yorktown, coming into the midst of the lighted fast food signs along Tillotson Avenue, and pulling into the hospital drop-off zone. The last time I’d been there was when my grandmother had died six years before, and I was pretty certain at that moment that this was my time.

They kept me overnight for observation, hoping to capture an episode of tachycardia on the monitors, so it could be analyzed. There was a big fight about me being able to retain control of the Xyrem; they wanted to dispense it, and it had to be explained repeatedly that the doses were variable in both time and amount, and thus I needed to keep it in my possession.

Despite downing the maximum dose of Xyrem, I slept terribly, getting two or three hours between the patient watching the hospital in the next room, the noise from the nurses’ station, the occasionally inflating bed, the unfamiliar pillows, the IV pinching my elbow, the demands for my blood, and the tachycardic episodes.

I had one in the wee hours of the morning. The tachycardic episodes were very strange. They were not connected to anxiety. My heart rate would zoom upwards and stay between 160 and 180 for some time – twenty minutes or a half-hour. During these, between my cardiac output suddenly approaching a normal volume (my cardiac output was low, but multiplying it by more than twice the normal speed would approach a normal volume) and the adrenaline poured into my bloodstream, I suddenly felt normal. Not normal as in my sick normal, but normal as in the feeling of what my energy level was like before I became ill. It was all illusory, of course – within the hour, my heart rate would drop back down, my cardiac output too, the adrenaline would be cleared from my bloodstream, and I would fade back into the illness’ grip.

The next morning, as I was waiting for Chimp to arrive, I heard two nurses talking in the hallway. I became totally convinced that they were talking about me and my mother – that they’d seen her come in with me and they were saying that she was the reason I was ill. I had the offending nurse called in and had words with her. She treated me with contempt and impatience, which only convinced me I was correct in my interpretation. I can’t be sure, but it is entirely possible I was completely wrong – it became clear to me weeks later that some combination of the Xyrem and the sleep deprivation had been tipping me into paranoia and psychosis.

That morning, they told me that they suspected what was happening was that my adrenal glands were, for some unknown reason, dumping out massive amounts of adrenaline. They told me that it could be adrenal gland cancer – pheochromocytoma. Looking it up, Chimp and I realized that it could explain a lot of my symptoms, would be treatable, and if so, could lead to much greater well-being for me. I don’t know if any two people ever looked at each other and wished something would be cancer more than we did on that occasion. They drew blood to check for it that morning and they sent me home, with no more illumination than when I’d arrived, and no better treatment for my insomnia.

***

Back home, nothing was better. It’s almost impossible to express the suffering involved in seven or eight weeks of not sleeping. I lay awake and alone through all those nights, getting two or three hours of a break from consciousness on a good night, but sometimes one or none. My pain was amplified by the lack of sleep, to the point that everything connected to everything else felt like it had been wrenched awry and hammered back into place, and painkillers didn’t begin to touch it. I was effectively pinned to the bed, unable to so much as roll over, much less to get up and sit in a chair or look out a window. I suffered through the days, exhausted beyond description because of the sleep deprivation, with my cognitive function massively decimated, racking my brain for any approach I hadn’t yet tried that might work. The successive failure of each thing I tried crushed my hope and broke my heart for the thousandth time. I felt like I was trying to live in a world I didn’t have the a tenth of the strength I needed to endure it. I struggled to type in a Google query or two some days, looking for a new drug or supplement, hoping that the solution would appear on the results page as if by magic. I felt my life was a ruin, reduced to nothing but pain and suffering and torment. I’d been worsening for so long, the path in front of me seemed pretty clear.

By the time I ended up in the hospital after more than a month and a half of near-total insomnia, I was suicidal. While Chimp was in Indiana with me for Christmas, I begged him to help me kill myself. There was no way I could think of – and I thought on this a lot at that time – that I could do it on my own. I couldn’t walk across the room; how could I kill myself? Months earlier, I had had my mother take the belts out of the closet next to my bed so that I wouldn’t be tempted; now I was regretting that request, although I didn’t think I could strangle myself, being so averse to pain. My knowledge of the drugs I had at hand was that the best I could accomplish was to land myself in the hospital, lingering through days of incredibly painful liver failure.

I wanted to just go, without the end being uncomfortable. Because I was in a mental state where I could only think of my own suffering, I begged Chimp to get me a gun. I remember him hanging over the bed as I pleaded for his help to end my life – a huge, imposing black walnut Eastlake affair that had been in my family for several generations, a bed I was restricted to that had come to stand for my inability to escape from the illness itself. He refused, and I despaired – I didn’t curse him, but his focus for years had been on doing the more and more I needed to keep me alive, and I felt angry that he was still pushing in that direction, and would only help in ways that would continue my suffering, not end it. I felt like it was time for that to stop, that he was forcing me to keep living when I didn’t want to, and condemning me to walk down the path of the difficult and lingering death that sleep deprivation was proving to be, rather than granting me the mercy of a quick and painless suicide. And adding “kill myself” to the lengthy list of things I couldn’t do made me feel even more impotent, even more alone, and it shrank the tiny box I was living in still further.

***

I mentioned at the start that this isn’t something I generally talk about, or even think about, because it’s extremely painful to remember. I have PTSD around this whole year – from the time I was moved to Indiana to the point a year later when I went to see Dr. Cheney for the first time, and then was taken to the house Chimp had bought in western Pennsylvania. I had to write this post an hour at a time over several weeks, because every time I came back to the draft, I felt like a black cloud was settling over my head, and the longer I kept at it, the longer it would hang there after I closed the window.

My mom and I have talked about this year a little. She invited us to come back to Indiana for a visit sometime. And…I couldn’t. It’s not that I don’t love my mom and want to spend time with her – I adore her. But just thinking about that bed, the darkened room, remembering every detail with immense vividness because I had no energy to divert myself and all I could do during that year was to let my eyes play across each inch of the room over and over and over, is enough to make me start to subconsciously wrap my arms around myself and ball my hands into fists. My mom is grateful she was able to care for me during that year, and in return I am enormously grateful that she did, but if I woke up in that room, with the massive headboard of that bed looming over me, I don’t think I’d be able to stave off a panic attack.

***

After the turn of 2009, matters started to improve a little. I did not have pheochromocytoma. It turned out that the treatments that the Indianapolis specialist had brought on board were causing significant problems. The culprit for the greasy skin and hair falling out was the HGH. It was probably the cause of the tinnitus and headaches. The paranoia, loss of touch with reality, difficulty swallowing, and trouble focusing my eyes was the Xyrem. We were never able to get a solid attribution for a number of the symptoms, including the tachycardia. The Xyrem folks said it wasn’t a known side effect, but when I consume more than a tiny amount of salt, my heart races, so I’m putting some part of the tachycardia down to the Xyrem, and some down to my body dumping adrenaline into my system in a last ditch-effort at trying to keep me alive without sleep.

Unsurprisingly, we dropped the specialist. In the first week of 2009, I found among my pill bottles an old bottle of Soma, prescribed by a doctor in California, started taking that for sleep, and it began to turn me around. It worked wonderfully, but when I ran out, nobody would prescribe it. We took me to a couple other doctors in town, tried a few more things, and ended up bringing Seroquel on board for sleep in spring 2009. That continued giving me more solid sleep than I’d had since 2007, and I gradually started to improve as a result. After a little bit more than a year on his waiting list, we got a call from Dr. Cheney’s practice that spring as well, saying that they could see me, and with the improvement from the Seroquel, we took me to Asheville in June, then home to western Pennsylvania. I’ve been gradually going uphill, on average, since. And that is entirely to Dr. Cheney’s credit – I continue to have periodic crises, and if I weren’t his patient, I don’t have confidence I would have made it through them.

Am I glad I didn’t kill myself in the darkest days of 2008? Yes, in retrospect – but only because my health has improved some. I still feel my desire to commit suicide was eminently rational and reasonable, and if my situation had stayed the same, I would not have wanted to live the years since then in that way, or to have had to go through the death that was approaching. There may come a time in the future – in fact, there probably will – when I worsen to the point that I feel I need to take the same action as Theda and Thomas and many other ME/CFS patients have, and I feel like I should decide on a workable method before that time comes.  I have little faith that medical knowledge will progress faster than my illness will. A lot of us die of suicide, and as heartbroken as it leaves those left behind, I can’t fault any of us who do. There is a limit to human endurance, and the horrors of ME/CFS frequently push beyond it.

I hate to think on that year, but it is also the source of my gratitude. When I was lying in that imposing bed in the dark, staring at the dresser and the window and the doorways in endless succession, I never thought I could improve to the degree that I have. It’s like living in a dream, frankly. I get a lot of praise for my positive attitude, but what it really comes from is that the past almost half-decade is all gravy to me. They’re years I never thought I would count, a life I never thought I would get back, even to the limited degree I have. Honestly, any day I can get out of bed, leave the room under my own power, and read the internet all day is a delight on the level of an all-expenses-paid vacation in some beautiful foreign locale for a normal person. If I hadn’t been through the traumas of that year, I would not be as happy as I am.

Because I did escape from that bed. Maybe I haven’t escaped from the disease – that’s not something I expect the universe to grant – and I know there will be another bed in the future from which I won’t escape – but what I have, for now, is more than good enough.

This entry was posted in ME/CFS and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

66 Responses to My Worst Year: Theda and Thomas and Me

  1. jenny says:

    You are wonderful
    and brave – thank you for sharing this

  2. Danielle says:

    I absolutely agree that you were thinking rationally and reasonably. And I think it’s wonderful that you have shared this post :) I read just a couple of days ago about a woman nearby to me who made such a decision, alone, trying to time things perfectly so that her body would be found and used usefully for research. Unfortunately the person she had expected to find her arrived early and called an ambulance. It took a number of days for the doctors to agree to turn off life support because their role is to revive and save…no matter how express the wishes of the patient. It should not be this way. People who genuinely feel they cannot live meaningfully and comfortably should not have to die alone to prevent others getting into trouble, and should not have their wishes subverted by doctors who don’t want to get in trouble.

    But all of this aside, we are all glad you are still here :)

    I’m curious about the use of Xyrem in your case. I am currently undergoing testing to see if I have Narcolepsy. I sleep plenty but most nights the sleep does not feel restorative in the slightest….too many dreams, not enough genuine rest. Here in Australia, Xyrem is not available and I am sort of glad. It might work for some but the side effects sound awful.

  3. Lyme Frenz says:

    I knew Theda through email. She had lyme disease, not ME/CFS. Is lyme called something else in other countries throughout the world? They are both terrible diseases to have and apparently are the same thing? I know that neither are recognized by mainstream medicine, but Theda was a chronic lyme advocate and wanted recognition of the disease.

    • Jocelyn says:

      Theda did indeed get a Lyme diagnosis late in the game. Previous to that, she had considered herself an ME patient for a long time. The ME community still considers her as part of our family because of that. There are some of us who have both diagnoses. For what it’s worth, my specialist, Paul Cheney, has told me that he cannot distinguish Lyme and ME/CFS patients symptomatically, and of course Lyme diagnosis is still sometimes difficult.

  4. Emily says:

    Wow, Jocelyn. I can see why that would be hard to write. Thank you for sharing.

    I’m so glad you have had enough improvement to leave that awful time. And I wholeheartedly agree with the “can’t fault them” statement. While I fervently hope it will never be necessary, I do believe you when you say it might be.

    Emily

  5. Patricia Hess says:

    Thanks for sharing your experience. The lack of sleep has definitely triggered suicidal thoughts in me. I went through a period of sleeping 0-2 hours alternating with about 4 hours, It was worse than awful. It took every ounce of everything I had to make it through and triggered my visit to Dr. Jamie Deckoff-Jones who was in Hawaii at the time. I’ve made good improvements. I respect each person’s journey and how they choose to conduct it. It’s really too much to bear at times.

  6. Karolyn says:

    I cannot begin to imagine what you went through, are going through, and what you will go through. I can only hope that you continue to face your adversity with the grace and composure you have thus far. Whatever decisions you make about your pain management, suffering, or end of life choices are your alone to make. As a friend, I am with you.

    • Jocelyn says:

      Thank you, Karolyn. As I wrote this, I kept asking myself, “Are the thoughts I had on this at the time clearly justified?” And in the end, I realize that while I wanted my readers to understand why, having not gone through with suicide, I only truly have to justify my thinking to myself here.

  7. Liz Gibbons says:

    i so admire your courage in the face of everything you have faced . . . .

  8. Helen says:

    Thank you. Like many others with this disease I have thought about this, have wondered what is the point in living like this… so far I have not chosen to go that road, but like you, think there may come a time when that is really the only viable option.

    You have so much courage to write this, to live despite the limitations, despite the mental and physical anguish. I hope you understand that you make a difference to a lot of people and that your honesty touches hearts in a very healing way.

    Blessings on you

  9. Annie says:

    Thank you for such a moving and powerful piece of writing. I am so pleased you did escape the horror of being trapped in bed and though still very limited you feel what you have now is more than good enough. I’m bedridden 24/7 and have been worse than this and better so I can relate to being able to cope and even be thankful for a quality of life that a healthy person would find extremely difficult.

    you suggest in this piece that you fully expect to be bedridden again in the future. I hope it’s ok to ask this but why do you believe you will be bedridden again? Has Dr Cheney warned you this could happen? Or do you just accept that there is always a chance for relapse?

    Once again, I thank you for writing such a honest and moving post.

    • Jocelyn says:

      And thank you for the kind words, Annie. I’m so sorry to hear you’re bedridden. I expect I’ll be bedridden again mostly because eventually we will run out of successful interventions for sleep for me. I have had total insomnia since 2007, and it periodically breaks through my medication for it. Dr. Cheney has kept in front of it successfully for several years, adding more and more items to the protocol each time it fails, but given how many times it *has* failed, I expect that at some point there will be no way to keep me sleeping, and once again I will end up in the place I describe in this post.

      • Annie says:

        Thank you Jocelyn for explaining it’s because there may well come a time when you run out of interventions for your total insomnia. I really really hope that this doesn’t happen and it must be hard to live with the knowledge that it may. I, like many on here, are so thankful that Dr Cheney was able to find treatments to help you sleep and improve. Your writing and ability to convey the horrors of living with ME benefit all of us and I thank you.

  10. Tanya Marlow says:

    You always write with such grace and dignity.

    I’m reading this with tears. I found this profoundly moving.

    And the desire for suicide? I get it. I do. I feel a horror just reading your words describing your experience of long-term insomnia and bed bound illness.

    I think that there are probably far too many of us with PTSD caused by the illness, and often by the response of medics to us.

    Thank you for your courage in writing. Your words matter.

    • Jocelyn says:

      Thank you for the heartfelt thanks, Tanya. Other ME/CFS patients definitely get it. Between the lack of treatment, the (near) lack of research, and the lack of sympathy from most of the medical world, it is not hard to understand why patients are often so traumatized.

  11. From my ignorance about this illness I try to understand how hard it must be to gather the energies to write any post in general and this type of post particular. However, I wanted to tell you that whenever I get a [New post] email from my blog I smile because I like to read you. And I’m sure I’m not the only one. I hope you have a good day!

  12. E. Milo says:

    Thank you, thank you, THANK YOU! You are such an incredible writer. Thank you for taking the time and using the energy to write this post. I forwarded it to my whole family. You have perfectly, cogently and rationally explained your feelings- and many of our feelings. I’ve wanted to write about this many times and never had the clarity or energy to do it -yet. Because it is such a new thought, I’ve needed to talk about the end of my life without scaring people and putting them on suicide watch. It’s a very difficult subject to bring up in an unemotional, clinical, almost mathematical way. In my experience, I needed to be heard and understood even though it’s not on my radar right now. Your post brought tears to my eyes, though it wasn’t mired in emotion, which I think is important with this subject matter. Again, thank you.

  13. Pat says:

    Jocelyn, thank you very much for this important, honest post! Thank you, also, to those who have commented. I can relate closely to much of what has been said by all. Yay! to all of us–alive or not–who have endured ME/CFS.

    • Pat says:

      Jocelyn, so many good descriptions in your writing (always!) in trying to paint our picture for non-PWC’s (people who aren’t afflicted with this exact same illness), as well as affirming from one patient (you) to we other PWC’s many experiences that are similar in this disease whereby we can often feel so very isolated:
      “I no longer had the extra energy to say any of the funny things that came to mind… and it meant I lost a way of relating… I stopped being able to roll over… I needed to be spoon-fed… My thinking was becoming increasingly incoherent… My heart rate would zoom upwards and stay between 160 and 180 for some time… within the hour, my heart rate would drop back down, my cardiac output too, the adrenaline would be cleared from my bloodstream, and I would fade back into the illness’ grip… some combination of the Xyrem and the sleep deprivation had been tipping me into paranoia and psychosis… IT’S ALMOST IMPOSSIBLE TO EXPRESS THE SUFFERING INVOLVED IN SEVEN OR EIGHT WEEKS OF NOT SLEEPING… pain was amplified by the lack of sleep… painkillers didn’t begin to touch it. I was effectively pinned to the bed, unable to so much as roll over…
      The successive failure of each thing I tried crushed my hope and broke my heart for the thousandth time… I felt my life was a ruin, reduced to nothing but pain and suffering and torment… I begged him to help me kill myself… I couldn’t walk across the room; how could I kill myself?… And adding “kill myself” to the lengthy list of things I couldn’t do made me feel even more impotent, even more alone, and it shrank the tiny box I was living in still further…
      I have PTSD around this whole year… I had to write this post an hour at a time over several weeks… It turned out that the treatments that the Indianapolis specialist had brought on board were causing significant problems… I continue to have periodic crises… if my situation had stayed the same, I would not have wanted to live the years since then in that way, or to have had to go through the death that was approaching… There is a limit to human endurance, and the horrors of ME/CFS frequently push beyond it… I never thought I could improve to the degree that I have… any day I can get out of bed, leave the room under my own power, and read the internet all day is a delight on the level of an all-expenses-paid vacation in some beautiful foreign locale for a normal person.”

    • Jocelyn says:

      And thank you, Pat. I’m glad you found it affirming and helpfully descriptive.

  14. kathy d. says:

    Thank you so much for your honest and heartfelt post. Believe me, it was very heartfelt to me.
    I have had about 8 sleepless nights in the last 6 weeks, a big jump from my usual about 5 hours of sleep, or used to be 6. But now 4 is about the usual. So, I understand the desperation involved, and then lack of sleep worsens the exhaustion and muscle pain.
    I am lucky in that I can read and do read, although much more slowly than I used to, and I watch TV and go online to some wonderful websites, including this one.
    I keep up with some websites daily related to books, as well as ME/CFS, as well as talk on the phone a bit, which is more limited than it used to be, too.
    I really understand what you felt, but am so glad that you have your mother and Chimp and the cats, as well as that beautiful garden, and that you’re still here enjoying the good things, too.

  15. Not many are brave enough to post as truthfully as you have. My mother had Parkinson’s and toward the end of her life asked my dad, a minister, to pray that she would die. He refused. When she knew she was dying, she refused all medications and medical attention. Even though she was unable to eat and she took no medications for her heart or Parkinson’s, it took her 7 weeks to die and she suffered greatly. Those of us caring for her suffered too. My father lived with dementia, needing 24-hour care and unable to transfer himself, for 5 years before he died. I told him repeatedly that the medication he was taking was keeping him alive. He chose to continue taking it saying God would decide when he was finished. I learned much through his journey, and other people who cared for him did benefit from his last years, but I’m not sure it was worth it for him to be so diminished and have so little joy. I know he did not want to live that way, but he was not in pain other than when he was aware enough to know what kind of life he was living. As a caregiver with both, I know what it means to want to put your loved one out of misery but not be able to do so. My daughter saw what I and her grandparents went through. She has asked me to be sure she does not linger in such a condition, hoping there will be a way to help her die quickly if the time comes. Even though I no longer suffer as my daughter does, I have difficult decisions about my end of life as well. As ill as she is, she will not be able to be a caregiver for me when I need one, and my husband is unlikely to be able to care for me either. I have told her and my husband to do the absolute least they can legally do to care for me and to live their lives without guilt over that. But my experience has been that it is rare to be able to control one’s life and just as rare to be able to control one’s death. Mother controlled the circumstances of her medical care, but she was unable to control the pain or length of time she experienced that pain. My father did not try to control his death and lingered in exactly the kind of life he did not want to have. Sometimes our choices are limited even when we plan ahead. Even though I do not know you, I know that I have benefitted from reading your blog. I am glad you are still able to write and share and hope that you will be able to continue that far into the future. I pray for a cure for this horrible syndrome and for treatments that will work, especially for sleep and for pain. Thank you for sharing.

  16. Siobhan says:

    Thank you for sharing. It has taken me a while to write this comment because I was in a similar situation to yourself a few months ago – being bedridden preceded the insomnia, but they were both horrific. At the same time, I lost so much weight I was starving to death, but when I was put in hospital I was so angry at everyone for not just letting me die. Eventually I recovered (a little), but those memories will always be with me.

    I am truly sorry for what you have been through and I hope there is a time when this devastating disease is treated with the respect it deserves. And I hope even more that making a contingency plan for this type of event is a completely unnecessary precaution (for you and me both).

    • Jocelyn says:

      Oh, Siobhan, I’m so sorry to hear you’ve been there too, but I’m glad you’re through it now. Well, I hope you’re through it now. Yes, sucks beyond measure, and having the memories to carry with one is no fun either.

  17. kathy d. says:

    How do people deal with their sleep problems? I take some medications, but am sleeping much less than I used to, and it’s affecting me. I took the list of medications to my doctor, which have been listed here — and which seem to work for our esteemed blogger — but my doctor said all were too strong for me. So, if there are suggestions, please mention them.

    • Jocelyn says:

      Kathy, honestly, I know this is much easier said than done, but at this point I would find a new doctor. You have been suffering with this symptom for a long time, and you can’t improve without good sleep. If you’re not sleeping, you need something that will help you do so. I suppose you could see if you could get that doctor to start you at low dosages, but if he/she shut you down on that list and didn’t offer you any alternatives, that doctor is not giving you good care.

  18. Sarah says:

    Thank you for such a clear and honest description of feelings that are very familiar; I think we’ve all gone through times like that! (Mine was in the first year or two of illness, also, incidentally, at my parents’ house in Indiana). I’ve found that being suicidal isn’t even the worse type of despair–indeed, in a sense, the thought that there was something (death) that could fix things was almost hopeful. Far worse than that was the feeling that life and eternity both are nothing but infinite and ever increasing rejection and pain, so that death would make no difference. Fortunately both emotional states are long past for me, as I trust they are for you. Even if your physical condition deteriorates (which I hope it won’t!), the memory of this happy time of relative improvement may keep you from relapse into either despair or vain craving of an easy way out.

  19. Sarah says:

    Also, this is probably far to simple a solution for insomnia as bad as you’re describing, but for me, taking cod liver oil right before bed (and more when I wake up too early) has made a big difference–the difference between sleeping 20 minutes at a time and 4-6 hours. I discovered this myself by accident and have never gotten a good explanation of why, though one naturopath had some theory about liver function. If anybody wants to try it, I believe it’s fairly risk free.

  20. Patrick (Brodie) says:

    Jocelyn, this post has been sitting in my inbox since the day it was posted and I could tell from the title it would be a must-read, but I kept putting it off because I knew it would be emotional and I wanted to wait for a time when I was feeling up for it. I finally read it tonight. By the end, I realized my jaw had been hanging open for some time. I can’t express the respect I have for you for enduring all of that and still being the person you are today.

  21. Katie says:

    Jocelyn, you said: “There may come a time in the future – in fact, there probably will – when I worsen to the point that I feel I need to take the same action as Theda and Thomas and many other ME/CFS patients have…”

    Why did you say “in fact, there probably will”?

    Do you not believe that people can and do recover? I hope you do. I know someone who was ill for 17 years, housebound for 7, and bedridden for 2, yet she recovered, and has stayed well for the last four years. And that’s just one of about six people, but she was the most severely ill.

    • Ketra Wooding says:

      Hi Jocelyn, what a beautiful , brave and no doubt hard post to write.

      Ive been very lucky that my body has started sleeping, i have no idea why, lots of changes could contribute or its just part of my illness journey. Im still completely bedbound though.

      But yep, no sleep and constant pain is the worst ‘its too awful and exhausting to even cry about it’.

      Something that helps me (but didnt at my worst, so who knows) is valdoxan…just another fun med to try if you’re struggling again. The other thing is, narcotics, but now i can’t tolerate them very often and i think the soporific effects would have worn off anyway.

      Much love and hugs.
      Ketra xo

      All respect to everyne who has suicided with this disease, we dont need emotional support or counselling, just good research that leads to treatments! Everyone who lives or has lived with this disease deserves a medal.

      Xoxox

    • Jocelyn says:

      Katie, I am sure some people do recover, but with the course my disease has taken in terms of crashes and the fact that at every crash I’ve never gotten back up to the previous level of functioning, the limited efficacy of treatments from a very good doctor, his advice, my age, and my experience with insomnia, I think I am just below the line where recovery could happen. I would love to be wrong, of course, but to me, honestly, pragmatism on this front is part of how I stay sane with this disease. Hoping I will someday be well is something that is not helpful to my psychological well-being – in fact, it makes me feel worse. So I try not to hope too much.

      About the insomnia specifically, that’s why I think suicide might someday be necessary. As I said to a comment above, “I expect I’ll be bedridden again mostly because eventually we will run out of successful interventions for sleep for me. I have had total insomnia since 2007, and it periodically breaks through my medication for it. Dr. Cheney has kept in front of it successfully for several years, adding more and more items to the protocol each time it fails, but given how many times it *has* failed, I expect that at some point there will be no way to keep me sleeping, and once again I will end up in the place I describe in this post.”

      • Annie says:

        Jocelyn, my approach is the same as yours. I always hope for improvement but balanced with knowing it is not guaranteed and I could go backwards, as I have many times.

      • Katie says:

        Thanks for your reply Jocelyn. I kind of understand the thing about hoping, because at least in my case, when things don’t go as well as I had hoped, then yes, I definitely feel worse. Bruce Campbell and several others talk about the importance of not setting goals — like “I’ll be better by this date or that” — and instead, letting go and accepting the present. Easier said than done, but that acceptance has helped many.

        I know you’re very grateful to Dr. Cheney, as he has helped you in some ways, perhaps major, so I would understand if you might find this next comment to be rude, but please know that’s not my intent at all. I guess I would suggest that if Dr. Cheney hasn’t been able to decipher what is causing your extreme insomnia, at least even partially, then perhaps you might consider getting another opinion…or another viewpoint. That way it can really be ended, or if not, at least reduced, maybe cut in half.

        Again, I mean nothing against you or Dr. Cheney…it’s just a suggestion. The people I know who have recovered haven’t seen any of the so-called ‘name’ doctors, with perhaps the exception of Dr. David Buscher, but he’s way out in Washington state.

        Anyway, best of luck to you and all of us. I hope you can find some new answers!

      • Jocelyn says:

        Oh, I understand. I haven’t discussed on the blog the degree to which I’ve sought treatment for my insomnia. I’ve had a sleep study, an MRI, and since 2007 have seen a number of doctors specifically for this issue – more than a half-dozen – between California, Indiana, and Pennsylvania, including a neurologist. The most recent was Daniel Buysse, who is a nationally-renowned insomnia specialist and happens to be here in Pittsburgh. I saw him in 2011. He is very hard to get an appointment with because he mostly does research, and is expensive. We spent two hours giving him my history, giving detailed descriptions of the issues around my insomnia and its severity, and at the end of that, he told me I shouldn’t spend so much time in bed (I don’t; I switch to the dayroom) and that he had no idea on other medications that I could try that might help. And here’s the thing – he didn’t charge us. Not that day, didn’t send us a bill, nothing. He realized he was up against something he didn’t understand, shrugged his shoulders and sent us away.

        So when I credit Dr. Cheney for keeping me alive, it’s because I believe that’s true. In terms of coming up with interventions for my insomnia, he’s done far, far more than anyone else I’ve seen, is always there when I need help, and because I’m an extreme case, uses my discoveries to help his other patients. The thing is, sleep is still very much a mystery. I’ve learned a lot about it in the last five years, and we don’t know why we sleep, or what causes it, so we don’t even know where to start on “fixing” it when it breaks. So solving intractable insomnia is like mine is not as simple as it sounds. I’ve long since failed the front-line stuff (every other doctor I’ve seen basically said, “Try one of these ten sleep drugs, several of which you’re known to be intolerant of”), and what we’ve needed is creativity, depth of experience with this unusual sort of case, and a willingness to listen closely to the patient. And I’ve gotten all of that from Dr. Cheney.

        He is using a new treatment that he thinks might be really helpful to my insomnia – it’s not a pill, but something that increases bloodflow to the brain. That makes sense to me as something that would help. But I need to have two dozen tests done before I can use it, and as I can only get out a tube and a half of blood at a time without crashing, it’s going to be a while on that.

    • Annie says:

      Katie, may I ask the person who you know who was ill for 17 years, including seven years of being housebound and then 2 years bedbound. Were her years of being bedbound and housebound at the beginning of the seventeen years so she progressed from bedbound to housebound and then she improved from there? Also how old was she when she first became ill? I hope it’s ok to ask these questions. Many thanks

  22. Pat says:

    Let’s remember that, ‘tho it feels like “same ol’, same ol’” year after year, this illness does morph slightly over time—Dr. Cheney has referred to “phases” (last I heard him on this subject, he described four phases). Perhaps you’ve asked him, Jocelyn, whether he has any prediction for the course of your illness, especially pertaining to insomnia. My point is that at different eras in one’s CFIDS, it seems that the severity of some symptoms changes (more/less pain, immune system challenges, cognitive problems, sleep irregularities, etc.). I agree with accepting what presently IS, but also find it helpful to remember that things can change. I say this as one who is despondent more days than not.

    • Jocelyn says:

      You know, I haven’t asked him for predictions, Pat, but he has talked a little about lifespan in the disease. His patients average in their 40s, though he has some quite older. There is some cancer, but it seems as if you can manage the disease to the extent you can survive and not kill yourself, the lifespan is relatively normal. Or at least that’s what he thinks right now.

      • Annie says:

        I hope this isn’t offensive to anyone but I would be quite comfortable if my lifespan was shortened. I manage as best as I can being bedridden and hope for improvement (I also know people are a lot worse than me) but the thought of living a very limited existence to my 80’s is hard (I’m 42)

      • Jocelyn says:

        That’s totally understandable, Annie. I’m not sure I want to do it either.

  23. I’ve been wanting to comment for a while, Jocelyn, since I read your post first, though it stirred up so many thoughts and emotions that I wasn’t sure what to say. I had been thinking of writing a post myself on a similar topic, but again, wasn’t sure how to approach it.
    What is sure is that it is important to talk and write about suicide and the issues around it. And it is important to do it honestly, as you have done. I don’t think you could have been more honest, and for that we all should be grateful. Reading about the unimaginable depths of your suffering has put some of my own recent troubles in perspective.

  24. Kristina says:

    I agree with many of the comments – we absolutely should be having more of these conversations.

    With all due respect to other opinions, I have become very much convinced that people should be able to die legally, and respectfully, when they have a physical illness that is either terminal or that carries a greatly diminished quality of life. Ideally, I would like for patients to be able to talk freely with family/friends ahead of time, explain the situation, let them ask questions, give them some time to get used to it, share in the planning if they wish to (or be present at the time). It must all be done so secretly now which just creates more angst for the patient and feelings of guilt and anger for the family afterwards. The way we let terminal patients slowly and painfully die is absolutely inhumane in my opinion.

    Thanks much for the thought provoking blog.

  25. kathy d. says:

    I don’t think it’s helpful to say, “I’ll be better by this date,” and then estimate a date. It would not be helpful to me. I just have to plan my life around what my realistic stamina level is, and try to work with that. Of course, I have had to have two dental procedures, one right after the other on the same day, and I haven’t been able to do that for three months and worry about the problem worsening. I could not travel within my city to a party for some friends, knew that wasn’t possible, even if a car picked me up. People still don’t get it because they see me sometimes.
    I do try to see people, friends, and neighbors as often as I can, and sometimes talk on the phone but that’s much less than I used to.
    And I have to drag myself around the neighborhood for errands, but only do a few at a time and then right on the same block or two blocks.
    But what I’m dealing with is my memory, not even of what I have to do; that’s all written in my day planner, everything I have to do, buy, whom I have to call (and about what), errands, etc. The problem is that I write sometimes, and I have to type all of my notes first and then work from that; I can’t remember one statistic, one thought, etc. So it all goes down on paper and I work that way. This is really annoying. I look at a mass of facts and ideas, which all look like a jumble with no logic, then I have to work a paragraph at a time. Can’t think of something as a whole until I’ve read it and worked on it 25 times. Is this familiar?

    • Sarah says:

      Kathy, how long have you been ill? What you describe sounds very like my first year, to an extent the first three years, when I was mostly bed-bound and suffering from some pretty extreme memory loss. I used to have a photographic memory and it was absolutely shot; I could stare at a page for half an hour and remember nothing about it five minutes later; I’d know I had read it only because I had my finger on a line. (I was studying for Ph.D. qualifying exams at the time, so it felt like the worst thing that could happen.) Eventually my brain seemed to start gradually rewiring, as if it were finding new ways of forming memory, plus, like you, I learned to take notes–which I was initially terrible at, having essentially never needed them before! It felt like learning to work with a brand new brain, and it took me a while (seven years now) but I did eventually learn. My memory isn’t at all like it was before, totally different balance of long term and short term retention, but it’s functional enough and on a good day, probably no worse than the average person’s. I do sometimes discover whole sections of my dissertation written up that I have no recollection of having done (!), but that’s a pleasant surprise. (For whatever it’s worth, I did eventually pass those exams and am close to getting my Ph.D.) So this is one symptom that really can fix itself to an extent, given time, and with your notes, it sounds like you’re doing exactly what’s needed to help your brain adjust.

  26. kathy d. says:

    This November will be the 28th anniversary of my coming down with ME/CFS after a horrible case of the flu. I was homebound and a wreck the first year or two.
    But as I get older, my symptoms are worse. I can’t do things I even did years ago, such as keeping up with doctors’ and dental appointments regularly. I just don’t have the energy.

    • Sarah says:

      Goodness, my hat’s off to you. I’m very sorry your symptoms are getting worse. Not something I like to hear from an altruistic or a selfish perspective (I’m 30).

  27. Adrienne says:

    Your description if your illness and the symptoms are so like my daughters that a couple of times I thought I was on her blog not yours. I was also told I was making my daughter ill because I wanted a focus in my life. Hard to believe that we live in first world countries where medical care and understanding are not provided to ME/CFS/FM/LYME/MASTCell activation patients. No specialists…
    Whatever path you choose you have the love and support of other sufferers with this/these diseases. We want you to hang around in the hope that there will be a cure and you will get better but we also understand that we don’t have the right to expect you to suffer and suffer. Take care and may better health and a meaningful quality of life be yours forever.

  28. My heart goes out to you. :(

  29. Pingback: It is Time |

  30. Libby Boone says:

    I have read this post alot over the last few months. Haven’t commented til now because … well..what can I say? I don’t usually feel like talking about my symptoms or the insomnia which seems to have become the biggest, most vicious ” black bear” I have ever seen in my life with this illness. The prospect of a downward trajectory is horrifying. However, I have come out of it before with a little relief — though not when it has had me by the throat for so long. So who knows? I may get better and I may get worse.

    The horrific thud of another suicide in our community shakes me so. And at the same time gives me a certain kind of strength — when we I am well enough to have any. Maybe strength is the wrong word (now you can see why have not posted a comment before.). Maybe it is more like a a sense of letting the cat out of the bag and the kind of relief that follows talking about it. I don’t know. A sense of truth. And truth is very important to me.

    Once again I must just simply say “Thank you Jocelyn.”

  31. Louise Bibby says:

    Wow Jocelyn, I can only imagine what it took for you to write that. I’ve been working on a series of blogs for over 12 months about my experience of pregnancy 11 years ago (which pushed me into severe electrosensitivity pain on top of the existing 10 yr CFS journey). I’ve had to keep putting it down because I hate going “back there” in my mind. I’ve realised recently, though, that some people may benefit from me writing about my experience, so I am about to publish the series. Your courage and commitment, not to mention incredible honesty, in writing this post gives me more inspiration to publish my own.

    I admit that when this blog post was written and it popped up in my emails I read a few lines and just knew I couldn’t read more. At that stage I was going through a particularly low period in my health, and I just couldn’t face reading the harsh truth that I knew this would contain. I am now much stronger and my health is improving, so I came back to read it (I also want to link to it in a new blog on my favourite ME/CFS bloggers!).

    Thank you. Few people could be as honest and open about their experience with suicidal thoughts and beliefs. Luckily for them, few people ever have to face what you have had to. I once saw suicide as selfish, but that was before I experienced illness to the point where I couldn’t see any quality of life in my future. Without quality of life, quantity of life matters little, I believe. Consequently I’ve changed my views on suicide.

    Your incredible gift of story-telling is one I constantly admire. Thank you for stepping through all you had to in order to publish this and every other post you publish. They are total gifts to the whole ME/CFS community, and make such a difference to our world.

    Thanks again. You may be “no poster girl” for CFS, but you sure are a great story-teller and a true inspiration to all others with CFS, and I’m quite certain also to others who read your literary pieces (cos that’s what these blogs are!).

    Keep Smiling

    Louise Bibby
    GetUpAndGoGuru.com

    • Jocelyn says:

      Wow, Louise, thank you so much for the kind words! Thank you for including me on your list of ME/CFS blogs as well; that was so generous of you. You and I are very much on the same page as far as purpose is concerned – the reason I started writing was because I knew few of my friends and family really knew what was happening to me (and to our community of sufferers) and putting fingers to keyboard had the capacity to throw light into some deeply shadowy corners. It did take a long time to write this piece, and obviously it had taken much longer just to be ready to write it, so I understand needing to be prepared to read it. We have to be careful shepherds of our overall diminished autonomic capacity, and knowing when we can and can’t handle a knock there is just as important as guarding our physical energy. I will be very interested to read your pregnancy series – I am amazed that anyone manages to endure it while having ME/CFS. It was one of those instinctive NOs for me, one of the things I just knew I didn’t have the capacity for.

    • Pat says:

      Amen, Louise!

  32. Pingback: 5 Top 'Living With CFS' Blogs To Read (not including mine!) The Get Up 'N' Go Guru

Leave a comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s