Tag Archive | chronic illness

Final Stages

Dear Friends and Family,

This is a post I’ve been putting off for quite awhile. But I no longer have the luxury of putting it off anymore – not if I want it to get written. My personal journey with ME is near its end. A long time ago, after months of deliberation, I made the decision that if my digestive issues ever got to the point where I could no longer get or keep food down naturally, I would not seek life sustaining measures, but would allow the illness to play itself out naturally. I am at that point, and have been for awhile now.

Let me preface this by saying that none of this is a judgment on those severe ME patients who choose to take advantage of technology like nasogastric tubes, hydration IVs, etc in order to remain alive as long as possible. I believe this is a highly personal decision, and what’s right for me may not be right for the next person (and vice versa). For me, this decision was made based on the knowledge of what ME often turns into for those who accept life sustaining measures. As bad as things are in my current situation, they could get even worse. ME truly can become a living death – except with much, much more suffering – a large portion of which is untreatable. This is difficult not only for the patient, but for loved ones who have to stand back and watch the process, longing to reach out and help but knowing their very presence only increases their loved one’s suffering a hundred fold. I have already experienced much of this. I cannot personally justify enabling it to continue and worsen via medical technology – not in my specific case. That said, each person must decide for him/herself when enough is enough, and where their individual priorities lie in terms of life and the quality it holds for themselves and those around them.

Right now, my body is literally starving itself to death. Even my best efforts to get food down have been met with frequent vomiting, rapid weight loss, and clear disease progression. The fight to get food down is exhausting. It involves closely monitoring nausea levels every single waking moment, waiting for the one minute window I may receive each day where my nausea subsides just enough that I think getting two or three bites down might be feasible. Even then, I nearly always lose the food anyway. The excess weight ME once placed on my body is coming off extremely fast. Just one example: I have dropped over an entire ring size just since the end of May. You don’t lose a whole ring size just from dropping a few pounds. It takes a significant amount of weight loss to make that happen. Everything I own is loose on me. In fact, the other night I was shocked when able to pull my wedding ring off for the first time in years!

Because the food battle has become so exhausting and completely pointless, the decision has been made to stop trying to force feed a stomach that clearly can’t handle it anymore. Ironically enough, stopping all food has actually lessened my nausea significantly. Still, all it takes is one bite for things to skyrocket again and my food to come flying out, totally undigested, either the same day or the one following. So no food for me. At this point, I have already begun experiencing some hypoglycemic symptoms. Also, my resting heart rate has shot up to 120 bpm. Several other new symptoms have also developed. Needless to say, it won’t be long now.

The biggest issue I am currently facing in all of this is a complete lack of medical care. My most recent post explains some of how this happened. Much more has happened since then, and I fully intend to write a post specifically about that as soon as I’m able, but for now, the basic situation is the same. No care. I am in the process of trying hard to get back into hospice care for this last leg of my journey, and will let you guys know how that turns out. My biggest fear at this point is that my husband and I will be forced to go through this completely alone. Among other things, a hypoglycemic coma is almost certain (assuming my heart holds out that long), and it terrifies me to think of my husband having to deal with that alone, with no doctor or nurses overseeing the situation. This should not be happening in today’s society! But it is. And people need to know it happens, often to the very sickest among us. But more on that in a later post.

For now, I simply felt the need to update everyone on how this disease has progressed, where I’m at with it, and how it is most likely to play out in the near future. Should something happen before I get a chance to write future posts, my mom (who works in the medical field) has promised to take over this blog for me. She will write a post updating everyone on the situation, and has my full confidence in being capable of answering any comments or questions left on posts in the future. I appreciate her taking on this responsibility.

My deepest love and gratitude goes out to everyone who has been so supportive of this blog. Several of you have become good friends, and writing this blog has given me a sense of purpose – something we all need in life. I hope and pray this post finds everyone doing as well as possible. I’ll keep working at adding new posts as long as I’m able, so keep your eyes peeled!

Edited to add: Please check out my subsequent post, Clarification, for a bit more explanation of the history behind my digestive issues and various treatments tried and failed. Thank you!

Big Changes

I’m going through some big changes here, and not necessarily good ones. My initial version of this post was looking quite different, but things haven’t played out the way they were supposed to, and to be honest, I’m in a bit of a mess. Here’s the deal: Medicare recently made some nasty changes. Because of these changes, many people are being kicked out of hospice care who would previously have received it until the day they died. Many people, including me.

This obviously is a bad situation for anyone to be in. My biggest fear has long been living without access to any medical care. I was forced to do so for about six months once, and my condition is far worse now than it was then. That said, my doctor (who also happens to be the medical director for local hospice) recently looked me in the eye here in my bedroom and promised me he would not kick me out of hospice until another appropriate care plan was in place. He promised me he was not going to abandon me, and that I didn’t need to worry anymore about being without health care in the future. He then made a plan with a county based home health care service that involved him continuing to oversee my care while their nurses made occasional visits and carried out his orders.

This was difficult to accept, because it meant needing to pay for a lot of things that were 100% covered in hospice, either by Medicare or through donations made to the hospice organization itself. I was told the home visits would not be covered by insurance unless “skilled nursing” were required (skilled nursing includes things like IVs, pumps, and basically anything that absolutely requires a nurse to handle). I need skilled nursing because pills no longer have any effect on me (a common problem in severe ME patients due to digestive issues), but so far my doctor has been hesitant to order it. I was on a subcutaneous pump for awhile that worked great until I built resistance to the medication, but eventually the doctor took me off of it rather than continue increasing the dosage. Medications would also no longer be 100% covered, so that could get expensive fast. Also, hospice has been providing the adult diapers I need free of charge, so I would need to begin buying those as well (and trust me, they are not cheap!). But I adjusted. I reached out and found some resources to help meet the expected increase in bills, and I prepared myself for the transfer in care. It could be worse, I told myself. At least I’d still be receiving care, right?

Wrong. During what was supposed to be an enrollment visit from a county nurse, I was informed there have apparently been some huge misunderstandings between them and hospice. Far from what I was told, it turns out the county program cannot provide in home care at all unless skilled nursing is required. To make matters worse, my doctor chose to make the transfer happen on the first day of a whole week’s vacation (his, not mine, lol), so he’s not here to clear things up or find a solution. Because of this, the county refused to even enroll me in their program until they can get ahold of my doctor next week and see if he will order the skilled nursing I need (and they need to accept me into their program). It turns out the county nurses work mostly with people who have PICC lines installed – but they don’t install them themselves, and so far nobody locally has been willing to install one in a home setting. They also won’t do peripheral IVs because they need changing too often. They don’t generally work with subcutaneous pumps, but they said they could if the doctor ordered it again.

Yesterday was my last day in hospice care. This leaves me with absolutely no care at all this week. To further complicate matters, I was told yesterday that as of today, the release of information form I signed so that hospice could communicate with the county would be null and void, and I would need to sign a new one with the county if I wished hospice to be able to continue communicating information to them. But since I’m not being allowed to enroll in county care, they didn’t have me sign a release. So nobody can even talk to each other. Fun, huh?

I’m telling myself to trust my doctor right now. This probably sounds insane to many ME patients due to the frequency with which we are let down by doctors, but I really believe this doctor is a good guy. I believe he thought there was a solid care plan in place for my transfer. And I want to believe he will keep his promise to me and find a way to get me the care that I need.

Meanwhile, I continue living without any pain medications whatsoever. Right now I am experiencing near daily 10s on the pain scale – usually many times a day. This level of pain is incredibly difficult to bear. It is a level of pain that will drive a person insane. It makes rational thinking very difficult – a person experiencing this level of pain would literally cut both their arms off without anesthetic if it would simply make the pain more tolerable. It is an experience described on ME assessment sheets as a point at which being eaten alive by tigers literally couldn’t hurt any worse. It is sheer desperation. It is torture. And it needs to stop.

I don’t know what the future holds for me right now. I would be lying if I said some seriously desperate thoughts have not entered my head while fighting against these intolerably high pain levels, knowing there may not be any relief for quite awhile, if ever. But I also believe I have a doctor who genuinely cares about my well being. So I keep my hopes up that soon, hopefully very soon, he will find a way to get me an appropriate medication in a way that will work to bring my pain a bit more under control. It takes me quite awhile to get these posts written, but I promise to update everyone on the situation as soon as I possibly can once we figure out what’s in store. Once again, I want to thank everyone for sticking with me through this crazy rollercoaster ride. Here’s hoping the next rise is just around the bend. Take care.

Rough Waters

Lately we’ve encountered some rough waters here at my place. I apologize for being behind on comments. I assure you I am working as much as possible to get caught up. Please never feel bad if it takes a few days, or even a week, for comments to be approved or replied to. I’m simply not always able to do the things I’d like here, although I do usually receive your comments one way or another shortly after they are posted, and they always make me smile.

That said, on to recent events. Right now, I am completely without pain medication. Because pills have absolutely no effect on me – and many other severe ME patients – due to digestive issues, and because my doctor isn’t quite ready to put me back on a morphine pump or something similar, our options for pain relief are rather limited. Two weeks ago I had a couple of really rough days. My pain was incredibly high, and my body responded with chills, shaking/trembling, a constant cold sweat, and many more unpleasant symptoms. There was really nothing to be done but suffer through it, so I did. I honestly felt like I was dying. I hadn’t felt quite that bad in some time, despite living with a daily pain level that never goes below an 8.5 (and that’s if I’m lucky). This is, of course, on the “ME pain scale,” where 10 is a level of pain where getting eaten alive by tigers literally could not hurt any worse. Not fun.

Eventually that phase passed, and I went back to “my normal,” although it took about a week to begin to recover from the extra strain placed on my body during those few days. Right around the time I was starting to come out of it, my doctor prescribed a new medication. This was a cream that supposedly treated pain and nausea, and was to be applied to the backs of my wrists every three hours. Shortly after the first application, I began experiencing an increase in my ever-present headache symptoms. After the second application, the headache turned into a full blown migraine and my nausea level began to rise. After the third application, my body had had enough. I threw up – twice in one hour – and became capable of nothing other than lying in my quiet room with my eyes closed, wishing the migraine would end and my stomach would settle. I immediately made the decision to stop all further applications of this medicine, but even so, it took my body all night and half of the next day to return to normal.

As luck would have it, later that evening I began experiencing a new pain in my lower left abdominal area. I had never felt this type of pain before, so wasn’t sure what to make of it. The area in question hurt constantly – even more so when I gently pressed down on it with my palms. As time went by, the pain worsened, eventually spreading to my lower left back – directly opposite the pain in my abdomen, and right next to a compressed disc in my spine. Seeing as it was a weekend, I didn’t want to bother the hospice nurse, so I put it off several hours. Eventually the pain became too much for me. I could barely breathe, much less speak, so I had my husband call hospice’s emergency line for me. Then I threw up.

To make a long story a bit shorter, I eventually realized my bowels had backed up. Thankfully we caught it before hospitalization was needed to fix the issue. Still, it took a lot of very painful effort to empty my bowels. Then, despite the humiliation of lying in my own waste, I begged my husband to wait to clean me because during the course of the effort needed to clear things, my back muscles had gone into a constant spasm, and I just couldn’t face the pain of laying on my right side so he could clean me. I am someone who has lived with multiple chronic back issues since childhood, so knotted and spasming muscles are nothing new to me, but this was a whole other level of back pain due to the fact that this was a severe spasm that refused to let up even a little for many hours. Eventually the hospice nurse showed up and insisted on cleaning me right away. Usually I would be mortified to have a total stranger clean up my waste, but this night in particular I was in far too much pain to care. In fact, I was barely aware of whatever she did. I simply focused on trying to make it through the pain of my spasming muscles combined with my increased ME pain.

The nurse did nothing to stop the spasms (although she did comment on how that whole area of my back was completely tight), choosing instead to give me a nausea medicine and a pain pill – both given rectally since my nausea was too bad to keep anything down, and pills don’t go through my stomach properly anyway. After she left, I asked my husband to apply some Chinese ointment to my back (this stuff really works – think of it as all natural Chinese Ben Gay, but more effective). Often, having my skin rubbed is enough to bring me close to tears, but this night I simply wanted the spasms to end. Unfortunately, the spasming continued throughout the night, until eventually my body was so exhausted I fell asleep. When I awoke, the spasm had stopped and my muscles were simply sore. I had two good days, then another day where my back muscles resumed spasming, causing horrible chills, nausea, and vomiting once again. Eventually it stopped again, although my body is still paying the price for that particular episode.

Needless to say, the past few weeks have felt like one bad hit after another. I have gotten a few pieces of good news, however. First, my mom landed a job here in town. While this job is way, way below her qualification level, she really wanted to be here to help with my needs, and was lucky to find any job at all in her field in this sized town. She starts in August, and her new hours will allow her to be here frequently while my husband is away at work. For many months, I have desperately needed a carer but been unable to afford one or to find any affordable programs to help us out. Because my husband’s schedule varies greatly, there will still be some days I will spend almost entirely alone. But there will also be other days where I only spend approximately two hours alone before my mom arrives to help out until hubby gets off work. Meanwhile, I have an aunt and uncle who live two floors up who recently heard about my dilemma with not being able to make it to the commode anymore. They came down and made a sincere offer to come help with “sanitary cleanup” when needed while my husband is at work. Because my uncle is disabled, they’re home most of the time, so this is a huge help! Between them, my husband, and soon, my mom, I may never be stuck lying in my own waste again! I still need to overcome my embarrassment at having various people clean me, but regardless of how I feel about that, this is really good news. Definitely a step in the right direction.

And on that happy note, I’ll close. Thank you for taking the time to join me on my journey here. It means so much knowing I’m not alone, and that I can help educate about this disease while meeting and making new friends along the way. You guys are the best!

Disease Progression

Recently, it has become much more difficult for me to use the commode. Even though it is just one step from my bed, attempting to use it under normal conditions involves extreme difficulty breathing, muscle weakness (due to cellular fatigue), shaking, and a constant battle to maintain consciousness. Nevertheless, I have been determined to continue using my commode, mostly because I haven’t wanted to face the other options. This changed last week.

One night last week, as I was laying in bed watching Netflix on my tablet, I suddenly had the odd feeling my bowels had released themselves. I wasn’t sure – there had been none of the usual warning signs – but still, the suspicion nagged at me, so I grudgingly made my way to the commode to check. Sure enough, my bowels had released themselves – all over the place! This isn’t easy to write about – I tend to feel embarrassed/humiliated over such issues – but it is part of ME, and documenting this illness is the primary purpose this blog exists. So share I will – even the most humiliating aspects.

Anyway, back to my night of horrors. My husband was asleep, so I woke him to discard my soiled garments for me. This is embarrassing in and of itself (“Here honey, take my poopy shorts and underpants and wash them for me, will you?”), but by now my husband is used to gross requests, so he didn’t make a huge deal of it. By the time he returned to the bedroom, I was in pretty bad shape, gasping for air, shaking violently, and on the edge of passing out. Lawrence (my husband) offered to help me further, but I’d had enough humiliation for one night. I was determined to clean myself, by myself. I began the tedious process of wiping once, then sitting back and gasping for air, clinging with all I had to consciousness, before finally feeling it somewhat safe to attempt to wipe again and repeat the process. Lawrence offered to help several more times, but each time I refused with a breathless grunt or quick shake of the head. Finally, I realized it would take me all night (and most of the next day) to get clean on my own – and that’s only if I didn’t pass out (a big if!). I asked for help.

Lawrence immediately came to my aid, spreading a towel out on the bed for me to lay on. At this point I could not stand on my own, so Lawrence had to half-carry me the few feet to my bed and help me get laid out correctly. He then proceeded to don some gloves and clean me up. After this, I asked him to bring me my pulse ox monitor to check my heart rate, since my heart had been going absolutely crazy this entire time. At this point, I’d been laying still for approximately 30 minutes, yet my heart rate was still bouncing between 160-170 bpm. I hate to think what it was when I was actually upright! After everything was finished, Lawrence helped me sit up on the edge of the bed so he could slip clean garments onto me. I could not remain upright on my own, so he had to hold me upright while slipping first one leg, then the other through the appropriate holes. He then stood me up and held me while he and I somehow managed to pull everything up where it needed to be. Then he placed me back in bed, tucked me in, and left me still shivering, breathing hard, and experiencing crazy heart stuff for quite some time as I struggled to recover.

This experience turned out to be the final straw. Combined with the extreme difficulty and risk factor involved in commode visits over the previous month or so, it forced me to realize it was time to look for other solutions. I contacted my hospice team, who brainstormed ideas. I cannot use a bedpan on my own, and since I am without a carer for approximately 11 hours most days, that simply wasn’t an option. The only thing left was adult diapers. I hate that term. “Diapers.” As if we don’t feel enough like babies without calling our undergarments diapers. Whatever name is used, this is now our solution. It’s not perfect. Sometimes it leaks – especially if I have to urinate more than once per change, but bed pads do a great job of absorbing any leakage so we don’t have to change sheets.

I’m not proud of this latest progression. I’m still extremely uncomfortable allowing myself to “go” in bed. But it does save valuable energy, and prevents the horrendous symptoms associated with my attempted use of the commode. I try to tell myself there’s nothing to be embarrassed about, that this is a normal progression of my disease, and I should simply accept it and move on. But there’s something inherently humiliating about asking your husband to change your diaper, to deal with the smells and messes, and to wipe you like a baby. It’s hard. But it’s ME. Hopefully this aspect will get easier with time. Until then, I’ll be here documenting the good, the bad, and the (very) ugly.

To all my fellow sufferers, hang in there! Despite the isolating nature of this illness, we’re all in this together. Hugs all around!

Birthday Madness

This week was my birthday. I’m trying not to think about the time that’s passed since my last birthday, since I’ve been home/bedbound the entire time. To be honest, I’m not exactly thrilled to be here for this event. Don’t get me wrong – if I thought for a moment I could get better and be well enough to live even a semi-normal life again, I’d have a list ten miles long of things I’d want to do. But doctors agree. Whether it happens today, tomorrow, or several months from now, I’m dying. And I’ve accepted that (though it wasn’t an easy process getting to this point). Now I’m simply ready to move on – for everyone’s sake. But more on that in a later post.

For now, I’m still here. And because I’m here, my family wanted to celebrate my “special day” with me. Those who live with moderate to severe ME will understand what I mean when I say that celebrating my birthday isn’t about me anymore. It’s not about getting gifts. It’s about giving a gift – the important gift of allowing loved ones to spend time with me, to feel like they’re doing something special for me on my birthday. Especially since this may be their last chance to do so. Earlier on in my illness, I hated birthdays – almost to the point of resenting them. I felt like, if birthdays really were about giving me what I wanted and/or needed, people would let me rest. They wouldn’t ask me to spend my extremely limited energy with them, fighting nausea the whole time, then spend the next several weeks in pain as I struggled to recover from our meeting. Instead, they would allow me to rest so I might actually have a chance of feeling somewhat well on my birthday. Then I realized that this was something extra precious I could give them. Happy memories with me, trying to make my birthday special.

Sometimes allowing others to do special things for and with us is the best gift we can give. ME is particularly hard on loved ones in that they often feel helpless while watching us suffer, knowing their presence alone brings an increase in agony throughout our entire body. So it’s important to give them as many opportunities as we can to feel like they’re doing something good for us. Whether it be celebrating a birthday, helping bathe or feed us, or doing anything else that comes to mind, it’s important to let them help. I used to feel guilty for relying on others to help me so much. I still do sometimes – especially when it comes to my husband. But I’ve come to realize my husband needs to be allowed to help me almost as much as I need his help. And my family needs to be allowed to celebrate my birthday with me. ME may restrict the number of things I can do for my loved ones, but this is something that is completely within my power.

So, I spent the day with various family members popping in and out. I also got some very touching, personal gifts from several people. Things I will treasure every day. I actually feel this was one of my best birthdays ever, and I spent it entirely in bed! My mom will be in town through the rest of the weekend, and has volunteered to come be my carer during her trip while hubby is at work, so that’s good as well. All in all, it’s not been a bad week!

I have several big posts in the works, so stay tuned for those. I hope everyone is doing as well as possible and getting lots of rest. Huge thanks to everyone who has read, commented on, and shared my posts so far. It has been great getting to know everyone, and I look forward to continuing to do so for as long as possible. Love to all!

Advice For Nurses Working With Severe ME Patients

The experience of having regular visits from hospice nurses has been a wonderful one, for the most part. The nurses who visit me are skilled, compassionate, intelligent, kind, caring, and just plain good at what they do. Considering I am their first ME patient ever, things have gone extremely well. Several individuals at hospice have taken hours of their own personal time to educate themselves on true ME and how to meet my needs in the best possible manner. Still, it has been a learning process, for all of us. Even I wasn’t entirely sure what to tell them at the start – after all, I’d never had this level of care before. It would take us some time to figure out what works best for me. That said, we pretty much have it down now, so I thought I’d share some of what we’ve learned. Hopefully reading this will make someone else’s learning period just a bit shorter.

Let me preface this by pointing out that each ME patient is an individual. No two patients will have exactly the same mix of type and severity of symptoms. It is important to sit down and talk with the patient and, if possible, his or her carer to go over what they think they need from you. This is especially true if you are entering a situation where regular visits will be made. Ignoring a patient’s needs will cause them tremendous amounts of unnecessary suffering, and will soon result in their sharp decline. That said, let me list the advice I believe to be most universal.

Visit Timing

Most ME patients follow a widely irregular schedule. Many experience sleep reversal, sleeping best during the daytime while spending nights awake. Others may sleep days one week, nights the next, and days again the following week. Still others slip in and out of sleep both day and night, while for others sleep is so rare they simply grab it whenever the body allows. Regardless of the schedule, sleep is extremely important for the ME patient. Because of this, it is important to ask when the best time is to visit. Also, try to be as flexible as possible. They probably won’t be able to keep the same time for every visit. The more flexible you can be, the less chance your visit has of intruding on the extremely important hours of rest each ME patient needs. I realize a nurse’s schedule is generally full to overflowing, but try to be as flexible as circumstances allow.

In addition to flexibility in initial scheduling, if you arrive and the patient is clearly having one of their worse days, it may be better to leave and reschedule yet again. There are some levels of suffering where physical examination and treatment become next to impossible, not to mention torturous to the patient. At those times, it’s wiser to reschedule for a better day than try to push forward despite such intense suffering.


Most severe ME patients live in close to total darkness. Obviously, medical professionals need some level of light to perform their work safely and successfully. At first, we addressed this issue by making a flashlight available. Juggling a flashlight along with needles, lines, stethoscopes, etc can be tricky, but my nurses pulled it off (much to my amazement). Later, I came up with the idea of using clip-on reading lights (like for books). We have two. One is clipped to a small folding table the nurses work at near the bed. The other is clipped to the bed rail / side guard on the bed itself. My nurses use the former while messing with my morphine pump and filling out paperwork, and the latter while sticking needles into me or examining my skin.

The most important thing with any source of light is to never shine it in the direction of the patient’s face. I cannot stress this enough. Even if the light is all the way across the room, shining it towards the patient’s face will cause indescribable pain and could trigger a sensory storm (a form of mild seizure some ME patients experience in response to sensory overload). Several nurses have unthinkingly made this mistake with me, and the effects lasted long after they left. Always, always, always be mindful of where your light is shining.


Most ME patients experience noise sensitivity in addition to their other sensory issues. Many severe ME patients wear noise reducing headphones around the clock. Please understand these headphones are a necessity. The patient is not listening to music or trying to block you out. They are simply reducing the normal volume of your voice and surrounding noises to a level more easily tolerated by their struggling body. While it is important not to speak too loudly, keep in mind if the patient is wearing headphones, you may need to speak at a normal volume just to be heard. Make a habit of asking the patient during your first few visits if your speaking volume is okay. They will appreciate your concern and willingness to adjust. Also, make sure your cell phone and all other noise producing devices are turned off or put on silent! I cannot stress this enough. The sudden jarring sound of a ringing phone can have disastrous effects on the patient’s health.


Due to the same sensory issues mentioned above, most ME patients experience any physical contact as painful, sometimes extremely so. As you can imagine, this can present problems when performing a physical examination, taking vitals, etc. ME patients are aware that some level of touching is necessary to survive. Our carers must touch us to help with basic needs, and you must touch us to meet medical needs. We accept that, and are capable of gritting our teeth and getting through it. However, it is important to keep all physical touching to an absolute minimum.

Do not touch the patient conversationally. Also, consider what aspects are truly necessary in the physical exam, and what can be skipped or done only occasionally, instead of every visit. If you can get by listening to their lungs in just one or two locations, do not listen at four, five, or six locations. The same is true of listening to the heart and gut. Do you really need to touch their feet to examine them for edema? Or will a visual examination suffice? When taking blood pressure, spend some time considering how you might make it less painful and intrusive. If you can get by taking their BP on their lower arm, it will probably be less painful and require less movement than using the upper arm. Only one nurse has offered me this option, but it was much appreciated. Another nurse offered to allow me to use my own electronic wrist cuff after noting its accuracy one day when we used it to confirm a BP that had been extremely low and difficult for her to hear. My point is, consider what is truly necessary for each individual patient, and don’t put them through unnecessary pain and suffering.


For most ME patients, every movement hurts. Moving an arm a single inch can sometimes be excruciating. Even when that movement is assisted by others or by devices, it still hurts, a lot. Be conscious of this fact, and do not ask the patient to move any more than is absolutely necessary.

Scented Products

Many severe ME patients are physically overwhelmed by even mild scented products. Others have a bad reaction to many chemicals used in perfumes, cleaning products, etc. Never wear perfume when visiting an ME patient. Also, try to use unscented deodorant, as well as any other products you might use. Even the smell of “unscented” hand sanitizer can overwhelm an ME patient. Consider applying it outside their room and waiting for it to dry before entering. This can spare them the worst of the scent and help the examination proceed more smoothly.


For most severe ME patients, communication is exhausting, difficult, and at times, impossible. We may struggle to process what you say to us and to piece together our response. We may grasp for words, use vague descriptions, or forget what we are saying mid-sentence. We may stutter, stumble, forget things you’ve told us, or even forget your name. Please be patient with us. We will have good days and bad days. Our communication abilities vary from day to day, and even hour to hour. Some patients use gestures or written words rather than speaking. Others use electronic devices at times to speak for them. Don’t let these things scare you off. We’re still in here; we still want to communicate. It simply takes more effort than when we were healthy. Be patient, and try not to interrupt. While we may pause and look to you to complete a sentence when we are unable, interrupting us while we’re still trying to talk will only frustrate us and cause us to have to start all over in our train of thought.

A quick aside here: because communication is so difficult and exhausting for us, I do not recommend asking ME patients themselves to educate you or others about their illness. While patients greatly appreciate a willingness on the part of medical professionals to learn about our illness, explaining it ourselves isn’t always doable. ME is such a vast illness, covering so many body systems and symptoms, it can be difficult and exhausting to attempt to organize an explanation on the spot. Instead, ask your patient (or their family) if they have any resources they’d like you to check out in order to learn about their illness. Personally, I strongly recommend the website hfme.org, or the book “Caring for the ME Patient” by Jodi Bassett, which is an excellent collection of the most important articles from the hfme website in printed form. Information on ordering the book can be found here (it is also available on Amazon). My care team has read this book and found it incredibly helpful and informative. I enjoy the Kindle edition myself, which allows me to quickly search for individual symptoms as they arise or become more predominant to see what information or advice the book contains about them.


Occasionally, a situation arises where you may need or want to have more than one person in the room with your patient. Always let the patient know in advance if this will be necessary. Having multiple people present is extra exhausting, and an ME patient may need to spend extra time resting and preparing for the visit beforehand if this will be the case. Always ask permission to bring someone extra (such as an intern) if it is not a necessity that they be there. While many ME patients are happy to provide an example of this little known condition, sometimes we simply aren’t up to having multiple people present. Never show up with an extra person unannounced, if it can be avoided.

Remember to do as much educating and talking amongst yourselves away from the patient as possible. At the side of a severe ME patient is not the right place for interns or new nurses to practice and learn new techniques. Remember, your presence alone places our bodies in distress and worsens our symptoms. We will spend days, weeks, or even months recovering from even the best run visit. Don’t add to that by spending loads of extra time in the room educating someone else. That can and should be done outside the patient’s immediate environment.


Treating the severe ME patient can seem like a daunting task. There are many important things to plan for, and you must remain mindful of even the smallest actions while in the patient’s room. And, should you be unlucky enough to witness the patient on one of their worst days, you will likely carry the image of that suffering with you forever, as few illnesses can match the level of pain and suffering ME is capable of producing. But in the end, you will walk away with the knowledge that you carefully and effectively treated a patient most health professionals ignore.

Most severe ME patients have no access to health care whatsoever. You can be part of the change we need. You can bring hope and relief – at whatever level possible – to individuals whom studies have found have a lower quality of life than sufferers of kidney failure, dialysis, chemotherapy, AIDS, and just about any other major illness in existence. Learning to treat someone with so many sensitivities and symptoms can be difficult and frustrating, but you’ll never find a more grateful patient.

I want to personally thank every nurse who reads this for taking time to learn, both about this illness and how best to interact with those who have it. It is nurses like you who bring credit to your profession. It’s nurses like you who make the biggest positive difference in patients’ lives. I wish every ME patient had access to nurses like you. Please spread the word about this terrible and hugely misunderstood disease. Thank you for your time and attention, but most of all, thank you for caring!

Vivid Dreams

Lately I’ve been having lots of dreams. Considering I spend a large portion of each day drifting in and out of hazy sleep, this isn’t too surprising. What is surprising, however, is just how realistic these dreams tend to be.

Over the past several months, my dreams have become incredibly vivid. I’ve had ultra-realistic dreams before, but never with this much regularity. Often, but not always, the dreams are nightmares. Sometimes these nightmares are terrifying, but often they’re more sad than scary. So much so that I frequently wake up with tears running down my face.

Even before my dreams turned extra vivid, I frequently awoke with no idea about where I was, who my loved ones were, or anything else about my life. These dreams being so realistic isn’t exactly helping with that. It frequently takes me 30 minutes to a couple of hours to figure out where I am, with my mind searching for and settling on several wrong locations before finally getting it right.

I recently read in several places that vivid/realistic dreams can be a symptom of ME. I’m wondering how many of my ME readers have similar experiences, so I figured I’d write about it. I don’t know if there’s anything we can do about it, but still. Sometimes it’s nice just knowing you’re not alone in a particular symptom. So how about it? If you have ME, have you noticed yourself having lots of extra vivid dreams since becoming ill? If so, did they start immediately after developing ME, or did it take awhile? Are most of the dreams good, bad, neutral, scary, sad…? Any themes you may have noticed? Leave your comments below. Let’s talk about dreams!