Tag Archive | spoonie

ME vs CFS – What’s Up With The Name War?

(Note: The following is an excerpt from my longer post, “Pyrexic Disease (or, Why The Creation of SEID Should Concern Us All),” written soon after the release of the recent IOM report. That said, I felt the analogy/explanation below deserved to be in its own post, separate from the SEID/IOM debate, so that people interested in more general ME and CFS topics can easily access it. If you are interested in my interpretation of the IOM report and how it will affect us, feel free to click the article’s name at the start of this paragraph. Otherwise, enjoy the post, and please feel free to share with as many people as possible! Thank you!)

When CFS was initially created in 1988, it was done “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” This is a direct quote from the release paper as archived on Pubmed. The fact that CFS was never intended to be viewed as a distinct disease of its own has been lost on most of the individuals diagnosed with it today. Patients (and many doctors) have taken a definition designed to create a category for researching unexplained fatigue and turned it into its own disease, demanding funds to research a cure and completely ignoring the fact that the group of patients diagnosed with CFS do not have a single disease entity, but a mashup of every fatigue producing illness under the sun. The following is an analogy that I hope will clarify the situation we are in and inspire both those diagnosed with ME and those living with a diagnosis of CFS to fight together for appropriate change.

When I first became ill, one of my symptoms was a constant, low grade fever. Because my doctors weren’t sure what was causing it, they wrote in my file that I had a “fever of unknown origin.” This wording is very similar to that found in the official description of CFS where it says it is for people with “chronic fatigue of undetermined cause.” Imagine if, instead of continuing to seek the true cause of my fever, my doctors and I had settled for the label of “fever of unknown origin.” Imagine that this became the norm any time anybody visited their doctor with a fever. Soon, insurance companies begin to realize the money they can save on expensive tests by convincing doctors and patients to not bother searching for the cause of each person’s fever. At the same time, doctors realize they can save valuable time and thus see more patients if they simply label everybody with an abnormally high temperature as having “fever of unknown origin.” Pretty soon, people with this diagnosis begin talking to each other. They’re ill, and because they all have a fever, some of their symptoms (such as chills and muscle aching) are almost universal among this patient group. They begin talking as though they all have the same condition. Several decades go by, and now nearly everybody – some doctors included – are treating “fever of unknown origin” as its own distinct disease.

But there’s a problem. Just before it became commonplace to immediately diagnose anyone with a fever as having “fever of unknown origin,” an outbreak of Polio hit the US. Initially, some of the doctors and researchers who knew better insisted that what a portion of these people had was Polio, but over time more and more Polio patients were simply labeled with “fever of unknown origin” and sent on their way. Because of the (correct) protestations and education attempts of Polio experts, many people began to associate the term “fever of unknown origin” with Polio. Now, decades later, the two are nearly always thrown together, and Polio as a distinct disease has been all but forgotten. Patients who come down with Polio are almost never diagnosed with it. Instead, they’re thrown together with everybody else who has a fever of any type, both in research and in day to day conversations and media articles. Because the two terms are frequently heard together, many people insist they are the same thing. Patients diagnosed with “fever of unknown origin” often prefer to say they have Polio, simply because the name sounds better and they believe them to be the same condition. Some people get very ill and die for lack of treatment, but because the majority of people diagnosed with “fever of unknown origin” don’t die of their condition, the ones that do tend to be seen as unfortunate, infrequent cases (though their stories are often used to raise funds to research “fever of unknown origin” patients – despite the fact that results are highly inconsistent due to having too many patient groups thrown together).

One day, the government decides to spend a million dollars to convene a panel to reassess “fever of unknown origin / Polio” and decide if a new name and criteria are needed. This panel considers using the name Polio, but because there is no evidence of classic, old fashioned Polio in the vast majority of “fever of unknown origin” patients, they reject the name as being unscientific. Instead, they decide to rename this diagnosis to “Pyrexic Disease.” Patients are thrilled. They feel the new name lends a sense of legitimacy to their (very real) suffering. Also, the continued lumping together of everybody with a fever saves insurance companies money. It also saves time in busy doctors’ schedules, while simplifying their jobs overall and keeping patients happier. Nobody gets accurately diagnosed with any of the true causes of fever anymore, but nobody seems to care. And Polio has all but disappeared as a distinct diagnosis.

It’s hard to imagine this happening, isn’t it? But this is exactly what has happened and is happening with Myalgic Encephalomyelitis (represented by Polio in this story) and Chronic Fatige Syndrome (represented by “fever of unknown origin”). The government is now attempting to rename so-called ME/CFS as Systemic Exertion Intolerance Disease (“Pyrexic Disease” above). And many people are happy with this. But ME isn’t CFS any more than Polio is equivalent to a fever of unknown origin. ME is a distinct neurological disease, with fairly well understood underlying pathology. It can be diagnosed with a high degree of accuracy using a specific series of medical tests. And it has a long standing history of its own, starting long before the fatigue category CFS was created. CFS, by definition, has always been a diagnosis of exclusion, a placeholder category for patients with “chronic fatige of undetermined cause.”

By treating CFS as its own distinct illness, the powers that be keep people from getting an accurate picture of what’s happening in their bodies through correct diagnosis. By settling for CFS as a final answer, patients are unable to benefit from the research and treatments available for their own, specific condition (conditions frequently misdiagnosed as CFS include Multiple Sclerosis, Lyme Disease, certain types of cancer, Major Depression, and more – most of which are clearly diagnosable with appropriate tests and have their own specific research and treatments available). By combining the category of CFS with the neurological disease ME, we risk burying a very serious disease underneath a larger majority of patients who do not have the condition. Not only does this cause unnecessary, severe suffering, it also kills. People on both sides of this issue are dying – those with ME who fail to get the early diagnosis and treatment so essential to give them their best chance at a decent life, and also those MISdiagnosed with CFS, some of whom have potentially deadly conditions of their own.

So before you jump on the bandwagon and decide that this is just a silly name war, consider the implications. Consider the fact that it is in everyone’s best interests for each person to get properly diagnosed. And consider the fact that the only way this can happen is to get rid of the falsely used category diagnosis of Chronic Fatigue Syndrome / SEID, consistently recognize and correctly diagnose Myalgic Encephalomyelitis as the distinct neurological illness it is (characterized by Central Nervous System dysfunction and a unique, testable type of muscle response to exertion), and ensure that those who don’t have the disease ME get properly diagnosed with whatever is going on in their bodies.

One last note: You may think this has nothing to do with you. You may be living a fairly healthy life. But consider the last time you felt fatigued in any way (whether it was generalized physical, cellular, mental, emotional, or some other form of fatigue). Consider the chances that at some point you will feel that way again. There’s a good chance if things continue down the path they are now your illness, whatever it may be, will not be properly diagnosed. Instead, you will be given a diagnosis of CFS/SEID and thrown in together with millions of people who don’t even have the same condition. This does apply to you. It applies to us all. Please help us spread the truth. Thank you.

The Past Few Months

Hello, everyone. It has been eight months since my last update, and I figure it’s high time I post another. My health has significantly deteriorated, and I have spent months, literally, trying to get this written. I hope it makes sense and does the job of explaining what has happened and where I am right now. I also want to take a moment to express my extreme gratitude for all of the support that’s been given – both here on this blog and elsewhere. Those of you reading this are some of the strongest, most amazing people on the planet, and I am blessed to have gotten to know you.

So what’s happened since my last update? The first thing you probably want an update on is the food situation. Due to extreme nausea, gastroparesis, and the inability to keep food down, I went more than 30 days without a single bite of food. I don’t know exactly how many days I went without – I lost count at thirty something. As expected, my nausea levels went down a bit once I was no longer trying to force food into a body that couldn’t process it. In fact, after the thirty- or forty-something days went by, my nausea – while still a constant presence – had improved to the level that I felt perhaps I could keep a bite of food down. There were several foods I wished I’d been able to have one more time, so I began trying a single bite at a time on my better days. Sometimes I kept it down, sometimes not. This pattern has continued, although now I can sometimes keep a small succession of bites down in one go. Even when I do keep the food down initially, because of the gastroparesis, I will sometimes throw it back up later that day, or even the next day. Basically, if I throw up at any point within approximately 48 hours of eating, I lose the food I’ve fought so hard to keep down. The process of eating is also difficult for my body in other ways. Among other things, the work involved causes my heart rate to skyrocket, and often my jaw muscles fatigue so quickly it takes all of my concentration and willpower just to chew enough so that I can swallow. Sometimes my jaw becomes paralyzed. Some days I eat a bit, some days I cannot. It all depends on what my body’s doing that day.

Overall, I am not getting anywhere near the amount of calories the average bedbound person needs to survive. Yes, I’ve tried liquid forms of nourishment, but those are often more difficult to keep down than a plain form of solid food. I have lost weight, but I am still here. I’m not sure how many calories I’m keeping down, but I can remember even as far back as several years ago gaining weight on less than 200 calories a day (some people with ME have this issue, while some have just the opposite). The running theory in my case regarding how I am surviving on so little food each day is that because my digestive issues came about so slowly, progressing over the course of years rather than hitting all at once, my body somehow trained itself to survive on less food than the average person needs. If, as a healthy person, I had suddenly gone from 2,000 calories a day to less than 200, I would likely have starved to death. But the body is amazing in its ability to adapt, given enough time, to survive in even the craziest situations. We (my medical team and myself) believe this is the situation for me.

That said, my condition is still listed as terminal (though not because of the nausea). Due to Medicare changes, many people who would formerly have had hospice care until they died are going without, and I am one of those individuals at this point. I have been in hospice, but right now I am not. I am, however, receiving medical care from home as needed through my primary doctor. He has taken the time to learn about M.E. and has truly gone the extra mile to ensure I am not left without care – even going so far as to give me his personal promise that I will never again be left without access to the medical care I need. This makes me one of the lucky ones. Many severe M.E. patients are left without access to any care at all. I’ve been there, done that, and have no desire to go there again. My doctor and I may not always agree on everything (ie, the best use of the only medication we’ve found to even touch my pain), but he is a rarity and an absolute godsend, and I would be in a world of hurt (okay, much worse hurt) without him!

The same would be true without my husband, who among other things has had to manually deliver shots to me every two hours for the past six months (long story, but it’s our only option right now). He is a hero in every sense of the word. My mom also continues to be heavily involved in my care, staying for hours at a time each week (along with the occasional overnight stay) to give my exhausted husband a chance to rest and/or get out and do some of the things he enjoys. My dad and brother have also been amazing in providing various forms of essential support. I understand not all ME patients’ familes are so understanding, and consider myself truly blessed to have people like this in my life.

I want to write more, but it has taken me far too long just to get this much out. Please know that I appreciate the comments that have continued to come, and I do read each of them personally as I am able. Unfortunately, I cannot respond to all of them, but I do read them. I would like to get a post up on some of the more recent happenings in the ME world, and have been working on one in bits and pieces for several weeks now. Hopefully I will manage to get that up soon. In the meanwhile, feel free to follow me on Twitter – I often find it easier to communicate in the bite sized format found there (plus I can retweet awesome posts from other users that I may not have the ability to write about myself, lol). My username is @aroundwthehound. Also, if you haven’t already, please check out my friend Kit’s posts over at A Rainbow At Night. I’ve gotten to know Kit quite well, and she occasionally includes a one or two sentence update about me in her blog posts (although she also has ME, so please don’t inundate her with requests for info about me). She has also started a new series on ME – its history, etiology, information on the various criteria, etc. – that is highly worth the time it takes to read and share with others.

Last but not least, please continue to help us get the truth out about true, classic ME. There is some terrific, accurate information about this disease on Kit’s blog, as well as in some of my older posts here (including the most important post I’ve ever written). And don’t forget the best resource on the web for ME-related information – hfme.org. Now more than ever we must do all that we can to educate both the public and our fellow patients so that, in moving forward, we can ensure everybody gets properly diagnosed with whatever condition they have, whether that be ME or something else. Thank you.

Another Update

Dear Friends,

Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.

First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me for 60 days, which should be plenty of time for things to finish playing out. So I do have care once again, and words can’t express how much I owe my doctor. No matter how many doors were slammed in his face while trying to get me appropriate care at home, he never gave up, never walked away like so many doctors do. He is an incredibly rare find, and I am blessed to have him overseeing my care.

Second, regarding the medical side of things. My doctor has me on subcutaneous Dilaudid, which is working pretty well for my pain, and finally stopping those horrendous 10s. My bowels have quit working on their own (the nurses can’t hear any bowel sounds whatsoever), so every third day we force them using a suppository or two. So far that’s working out okay. For a week or two I had heavy bleeding out of my private area – the cause of which is unknown since I experienced menopause nearly two years ago, and the symptoms didn’t fit menstruation anyway. It seems to be letting up somewhat now, but the whole thing is still a mystery. I am extremely fatigued and have difficulty staying awake most of the time. I also experience mental confusion, slurring of speech, extreme muscle weakness, lack of fine motor control, and other such symptoms more severely and frequently than I did before. And of course I’m still losing weight.

Recently, my body has begun refusing all liquids. It’s like the food fiasco all over again, but with liquids this time. Everything I try to drink comes back up. I am vomiting many, many times a day. I have tried many natural and prescription “cures” for nausea, without success. The one thing I have found I can sometimes keep a tiny bit down of is Red Raspberry Leaf Tea, although I still vomit that up more often than not. I have not given up the battle for fluids yet, as I’d rather not die of dehydration if it can be helped. There are other things happening in my body which will kill me soon enough without adding dehydration to the table. Recent blood work has shown the biggest contender at the moment to be dangerously low potassium levels. The levels I am experiencing are fatal if not treated, and I have chosen not to treat them. The low potassium is almost certainly a result of both lack of nutrition entering the body and frequent vomiting, and thus is simply one more part of the disease process I am allowing to play out. As time is now so limited, my husband has taken advantage of a federal law (the Family and Medical Leave Act) in order to stay home with me full time until the end. This has been not only a tremendous help, but a real necessity as things have progressed.

Looking forward, there are several more posts I felt strongly about writing. I do not think that they can happen at this point. This may well be my last post, although as I’ve said, my mother has the login details for this site and has promised to post an update once I’m gone. She is also fully qualified to answer any questions you may have for her at that time, and has promised to do so as time and circumstances permit. I just wanted to say how very much I appreciate all of you. The fact that you all have been so supportive, both in your comments and in sharing my posts around the web, means more to me than you will ever know. The ME community may be very ill, but we are also very strong. Thank you for showing and sharing that strength with me. God bless.

Clarification

(Note: if you haven’t read the post prior this one titled “Final Stages,” you will want to do so before reading on. Click here to bring that post up. Thanks!)

Hey guys,

First, let me say a huge thank you to everyone who has liked, commented on, and/or shared my last post. The outpouring of support from the ME community and elsewhere has been nothing short of amazing. Unfortunately, as I am now averaging literally hundreds of responses a day, there is simply no way for me to reply to individual comments. I am trying very hard to get together enough working brain cells for two or three more posts I feel are important right now, so energy conservation is an absolute must. Still, I couldn’t post this without letting you guys know how very much your support has meant to me. Thank you!

Second, I made a bit of an oversight in my last post by forgetting to mention at least some of the history leading up to this decision. I had not expected that single post to go viral the way it did, so had assumed most people reading it would be somewhat familiar with my journey prior to this point. Oops, lol. That said, let me explain. The decision to stop eating is not something I came to easily or quickly, nor is it something I decided on the very first time I found myself unable to get or keep food down. My case of ME is progressive, as opposed to chronic or relapsing/remitting, which are more common forms of this disease. I have had ME for over a decade, during which the disease has made clear and consistent progression regardless of any and all methods tried to slow it down or force it to stabilize.

Yes, I have tried it all. The diets, the supplements, the forced rest, living within the energy envelope, etc. You name it, and if it is a legitimate option to help people living with ME, I’ve tried it. As far as the nausea itself goes, I have tried multiple medications in several forms, including but not limited to: pills, oral liquids, sublingual (under the tongue) medications, creams, and suppositories. I’ve also tried diet and lifestyle changes. Nothing has had any effect whatsoever in helping my nausea. In fact, I had bad reactions to several of the anti-nausea medications that actually forced severe vomiting instead! Ironic, huh? As for liquid diets, while I was able to live on them for awhile, I can no longer keep them down, either.

One of the posts I plan to write very soon will be on what we believe to be the causes of my particular digestive issues, as well as those common in ME. Yes, I said “causes,” plural. I don’t believe at this point there is one single cause behind my digestive issue, but rather two or three, all common in ME, which have combined as the disease progressed to create an entirely untreatable situation. I’m sure the doctors could figure out something via artificial nutrition methods, but my last post explains my reasons for turning away from that particular route.

In any case, I wanted to post this to explain: This is not a decision I or anyone else should rush into. There are many types of treatments which exist for various causes of nausea, and it’s important to try to find a fix before making this type of decision. This has been a long, long process for me, and I wouldn’t have shortened it for the world, because now I know that I know that I know I am making the right decision for my circumstances. I have peace about it – even if I am a little nervous about how it will all play out.

Once again, thank you all so much for the tremendous outpouring of support and understanding I have received over the past few days. It means even more because I know many of you also struggle with each word and sentence you write, yet you chose to spend precious energy writing to me anyway. You guys inspire me every single day. Much love to each of you.

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!