Tag Archive | dying

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.

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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.

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!

Life Past Your Time

To live past your time is a terrible thing
Confusion, frustration, and pain will it bring
Separation will come from friends who are near
Relationships lost with those who are dear

Time will be wasted, hour by hour
Days full of purpose, beyond your power
Your body decays but your heart is still there
Fighting against all that needs repair

Loved ones face each day filled with suspense
Good day or bad? It all makes no sense.
Yes, life goes on, sometimes too long
when the time to move on has come and then gone.

The above is a poem I wrote several years ago as I reflected on life with ME. This illness is incredibly isolating. It is also unbelievably limiting. ME steals your health, your friends, your career, and much more. Sometimes it feels like it steals your sanity, too!

I’ve often heard this illness referred to as a “living death.” And that is what it is in many ways. ME patients, especially those of us on the severe end of the spectrum, often find ourselves in that lonely, confusing place between life and death. For many of us, ME will kill us, either directly or indirectly due to the amount of strain placed on our bodies (see my earlier post on this subject). But when it will kill us is anyone’s guess. Thousands of ME sufferers are bedbound, confined to dark, silent rooms, unable to handle physical touch or the sound of a loved one’s voice without severe pain and flaring of other horrendous symptoms, and we remain in that state for many years – often over a decade!

Being held in this place of limbo is difficult, and not just for us. Family members find themselves struggling emotionally, unable to truly “live” with us but unable to mourn our loss as well, as we’re not yet dead. People in the same home as a severe ME sufferer spend years walking on eggshells. They must be conscious at all times of any noise they produce, any light that may get into their loved one’s room, etc. They are often forced to keep odd schedules because our bodies are incapable of sleep at regular hours. We often end up needing help at all hours of the day and night. Even the assistance we receive from loved ones hurts. How difficult it must be to know that a loved one is suffering terribly in the darkness of the next room but be unable to do anything about it! To know that your very presence itself causes pain must be heartwrenching indeed.

My husband and I miss each other terribly. Yes, we still live together. But we can’t really live together. ME has stolen my life, our life, but allowed my body to continue breathing. Yet there is peace to be found even under these circumstances. I plan to go over that more in a later post. For now, I simply wanted to give a brief snapshot of what it is like to live in such limbo. I’ve learned a lot since I wrote that poem, but I still have days when it resonates strongly with how I am feeling. Prior to developing ME, I never understood how someone could experience true “living death.” That’s changed. It may not be a medically accurate description, but so far as the experience itself goes, there’s none better.

Our Most Recent Dilemma

Time for a personal update. First, though, I want to sincerely thank everyone who has taken the time and energy to read, comment on, and/or share my posts thus far. This blog has taken off far faster than I ever dreamed it would, and already I have met so many wonderful people! It feels so wonderful to find others who understand what life with severe ME is like and who are also passionate about spreading the truth about this largely misunderstood illness. Thank you!

Moving on… While educational posts are good (and I have much more to share), I must not forget the primary reason this blog was started, which is to chronicle my journey as a person living with severe ME. In many ways, I consider myself very blessed. Many, If not most, ME sufferers have no access to medical care at all once they become home/bed bound. I was in that situation myself for about six months, and it was beyond terrifying, not to mention agonizing. Nowadays, I receive wonderful medical care from my local hospice team, so I really can’t complain there.

That said, there are needs that are going unmet, and they are becoming much more serious. In order for us to pay the bills, my husband must work full time outside the home. This leaves me home alone for over 9 hours most days. My husband does what he can – most days he rushes home during his lunch break in case I need anything (which I usually do), but that still leaves me alone for 4, 5, 6, or more hours at a time. This isn’t exactly ideal for someone who can barely make it to the commode beside her bed. And the disease is progressing. Soon I will be unable to use the commode at all. Even now it takes a tremendous amount of adrenaline to get me there and back, and I’m forced to use hand rails the entire time lest I fall and hit my head.

Some of you may remember I have a service dog. Obviously I can’t leave home anymore, but DeeDee (my dog) is still a tremendous help. There was a time when just having her here was enough assistance for me to safely get by with my husband gone. DeeDee can retrieve objects, pull covers up or down, open and close the bedroom door (for more air or less light – I can’t have both just right unfortunately), and much more. But there’s only so much a dog can do, and having DeeDee is no longer enough. I need a human here to throw out the liner from the commode if I have a bowel movement so I don’t have to spend hours smelling it (bad enough for a normal person, much less someone prone to sensory overload!), to bring me frozen packs and change them out as needed to help control the extreme bouts of sweating that leave me lying in soaked clothes and sheets for hours on end, and to handle all the other little things that come up. I need a full time carer.

Unfortunately, this doesn’t appear to be happening any time soon. There is a state-run program I applied for with help from the hospice social worker that pays for a carer for physically disabled people, but it turns out there’s a two year waiting list to get approved. Two years! Chances are slim I’ll even be around that long. Plus, I need a carer now, not two years from now. My husband and I can’t afford to pay for someone out of pocket, and don’t qualify for any other forms of financial assistance. We’re in that awkward category where our income is just barely over the limit to qualify for help, but not enough to really meet our needs, so we also can’t afford for hubby to stay home more. And it’s not like we just need a carer for a couple hours a week. We need someone to help out at a level that would basically equate to a full time job (in other words, all the hours my husband is away working full time to pay the bills). Who’s going to do that for free?

Sooo we’re stuck. I’m extremely concerned about what will happen once I can no longer make it to the commode. A time is coming when I will not even be capable of maneuvering a bed pan. In fact, I already have times when I could not physically do this. The number of times I find myself paralyzed to one extent or another is growing steadily, and that’s not even considering the times of extreme muscle weakness and uncoordination. I desperately need to let go and stop forcing so much adrenaline just to meet basic needs. But letting go is a scary prospect when I know there’s no one here to catch me. What am I to do? Line the sheets, wear diapers, and lie in my own waste until my husband can get home? What other choice will I have?

I wish I could say my situation is unique. It’s not. Far too many ME patients find themselves in this same position, or worse. Society today simply isn’t set up to meet the needs of people like us. I suppose when you’re healthy and busy living life out and about, it’s difficult to really think about and imagine needs like ours. People just assume programs exist to care for us. Sadly, this just isn’t true. I hope my husband and I find a solution, and soon. I simply can’t hold on much longer.

Is ME fatal? A different perspective.

As someone currently receiving hospice care due solely to the effects of ME, it irks me when people claim ME is not a fatal disease. Many, many ME-related deaths have shown that, at the very least, this disease can be fatal. I’ve seen people throw around a statistic which claims the death rate for this disease is 3%. What they don’t realize is most ME experts agree this number is grossly underestimated. Let me explain why.

ME is most similar in nature to another neurological illness, Multiple Sclerosis. Like MS, most ME experts agree there are certain subtypes which exist within the same illness name. The most commonly suggested categories (and those I personally see) are stable (illness remains the same or improves slightly with careful energy planning), relapsing/remitting (illness cycles through better and worse phases), and progressive/deteriorating (illness consistently deteriorates over time, regardless of planning and treatment). Of these three, the second category, relapsing/remitting, seems most common, while the last, progressive/deteriorating, is least frequently seen. Short of a miracle, no one ever fully recovers from ME. If you hear someone who claims to have had ME and is now functioning at 100% normal again, chances are extremely high they never had ME to begin with. Unfortunately, due to the high level of miseducation about this disease, thousands and thousands of people diagnosed with CFS believe they have ME when what they truly have is something completely different. Read my post on ME vs CFS for more on that.

That said, anyone who spends any significant amount of time studying the true nature of this illness will see the tremendous amount of damage it does to multiple body systems. It makes sense that this damage would have a shortening effect on most ME patients’ lives. For example, Dr. Elizabeth Dowsett says of ME patients, “20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.” Dr. Dowsett goes on to explain that the vast majority of these deaths are recorded as general heart failure rather than being officially linked to ME.

Herein lies the problem. Education and general knowledge of ME are so uncommon that for most of us, cause of death will be recorded as a secondary condition, even if that condition wouldn’t have developed without ME. This brings to mind another illness where sufferers nearly always die of secondary conditions: AIDS. People with AIDS generally die of secondary infections which their bodies are unable to fight off due to the effect of the AIDS virus on their system. Yet everyone knows AIDS is a terminal condition. We don’t deny its severity or its life-ending effect just because the final straw is nearly always a secondary condition. The same should be understood about ME.

ME is extremely hard on the body. One survey found people with ME most often die of heart failure, but we die from it on average over 20 years earlier than people without ME who die of heart failure. Cancer is another frequent killer of ME patients, but again, we tend to die from it decades earlier than non-ME cancer patients. Again, this makes sense, taking into account the strain ME places on nearly every body system, including our organs. It’s time for the world to wake up and realize the seriousness of this disease, but how can we expect others to recognize these facts if we ourselves refuse to face up to them?

Not everyone with this disease will die as a direct result of it. Other things can happen. But it is unrealistic and goes against what information we do have to believe that the tremendous strain placed on our bodies by this level of ongoing illness will have no effect whatsoever on the length of life we are allowed. Smoking shortens life. Overeating shortens life. Cancer and AIDS and kidney failure shorten life, despite allowing a much higher overall quality of life than ME. It only makes sense that ME shortens life as well, for some more than others. As someone whom doctors agree is currently dying from this disease, I beg you, don’t minimize its effects when speaking to the public. Don’t ignore people like me. Don’t let our deaths be in vain. Spread the word – ME does kill.