Archive | February 2014

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.

Hope and Facing Reality

One of the positives that has come out of having a chronic illness is the number of amazing people I’ve met through networking with other ill individuals. I’ve learned so many things from the sick community! One of these things is that people have different ways of facing up to the reality of being ill. You’d think we would all follow a similar process. Something like: get ill, experience denial, get angry, grieve, then finally accept the reality of being ill for the rest of our lives. But this isn’t always the case.

Let me explain by telling you a bit about my journey towards acceptance. When I finally learned of my diagnosis and my doctor told me there wasn’t anything he could do besides try to manage the symptoms, I refused to accept his answer. I turned to the internet for answers. Countless hours were spent reading about the illness and various treatment options. When an option sounded like it might actually work, I tried it, but nothing helped. In fact, the mere effort required to implement new treatment options often caused me to deteriorate much more quickly. Eventually I had to admit there was no cure currently available for my condition.

At this point, you’d think I would have accepted this reality and focused on minimizing symptoms. But I wasn’t ready for that. Instead, I decided since nobody else had found a cure, I would be the one to find it. I spent countless more hours learning everything I could about how the body is supposed to work, how and why it malfunctions in people with ME, and what research had been done into these issues, both in ME patients and in other illnesses which share similar symptoms. I was determined to find a cure, if it was the last thing I did. During this time, I reflected back on that classic, inspiring movie, Lorenzo’s Oil, which I’d watched as a teen in high school. I even re-watched it several times (if you haven’t seen it, you’re missing out!). I figured if Lorenzo’s parents could find a cure for their son when medicine couldn’t, I could do the same for myself and others with ME. What I didn’t factor into the equation is just how much mental exertion exacerbates the symptoms of ME. In a cruel display of irony, the very illness I wanted to cure would itself make the fulfillment of that desire impossible.

Eventually (many crashes later), I had no choice but to give up on finding a cure myself. I did, however, learn a lot during my study of this illness, and I continue to learn what I can to this day. One thing I learned is that even the most hopeful researchers believe we are a few generations away from being able to fix the type of damage ME patients experience to their brain and Central Nervous System in general. Since that is the primary factor behind ME’s ongoing symptoms, it really wouldn’t matter if I had all the energy in the world. Science just isn’t ready. Technology isn’t close enough to realistically hope for a cure in my lifetime.

Yet often in the ME community, I run across people who are determined to believe a cure will happen in their lifetime. Are these people wrong to cling to hope? By no means! I myself clung to it for the longest time, but as someone far wiser than me once said, “hope deferred makes the heart sick.” Eventually, all of the knowledge and research I’d done began tugging at my consciousness, and for my own mental health, I had to face the facts head on and accept that for me, a cure is unlikely. There’s simply been too much damage done to my system. I’ve been strongly criticized when sharing these facts by people who saw me as trying to steal hope from others. On the other side of that coin, I’ve seen those who hope against all odds criticized as being unrealistic or uninformed. Neither criticism is okay in my book.

People deal with chronic illness in different ways. We go through different stages. Just because my journey towards acceptance took the path that it did doesn’t mean everyone else has to follow the same path. As a community, we need to respect each other’s individual needs. Some people need to think ahead and plan as realistically as possible for the future. Being told they shouldn’t be thinking about that stuff yet doesn’t help. Let them think! Let them plan! Let them process things the way they need to. Often it is necessary to grieve for something you know is coming before it happens. This is normal and perfectly okay. On the other hand, no one should attempt to force someone to give up hope. That hope may be all that’s getting someone through today. Remember, none of us can see the future. Miracles do happen. Huge scientific breakthroughs can occur unexpectedly. If people choose to place their hope in these things, even against all odds, that’s perfectly okay too! As mentioned above, there was a time when I needed to believe there could be a cure in my lifetime. It would have been incredibly cruel for someone to try to take that from me during that time. Just like it is cruel to accuse others of “giving up hope” when they make the difficult choice to face up to what they’ve learned and try to accept it rather than hold onto hope. In some ways I envy those who are able to keep hold of hope against all odds. It’s not easy when “the odds” are nagging at your consciousness all the time. That said, I’m content with where I’m at. It hasn’t been an easy journey getting to this current place of acceptance, and I still grieve and mourn at times, still keep an eye on current research, still wish sometimes there could be a cure in the next few months. But for the most part, I am accepting of the things I cannot change, and content to do the things my illness still allows.

A quick aside here: while I’m a firm believer that each person must face reality in their own way, I also believe we must be careful not to allow pressure from well meaning family and friends get in the way of being true to our own needs. In most cases, loved ones do not want to hear that there’s no cure. They definitely don’t want to hear that there most likely won’t be a cure in our lifetime. When the time came to break the news to my loved ones that my ME was literally killing me, it was a difficult thing to do. Many people still believe that the very belief that you won’t get well will keep you from ever doing so. This isn’t true, and goes back to a form of “miraculous thinking” typically seen in children (i.e. the belief that words or thoughts have more power than they actually do). If something happened and by some miracle I had a chance to get better, you’d better believe I’d take it! My acceptance of the facts in my current situation would in no way hinder me from getting better were the option available. So while you don’t have to wave difficult facts in loved ones’ faces, you also shouldn’t let them pressure you into ignoring what your heart knows is true and your mind needs to believe. Stay true to your own needs, whatever they may be in the area of processing and acceptance. You owe yourself that much.

Different people face reality in different ways. Those of us in the chronic illness community have enough on our plates to deal with without facing criticism from each other for how we choose to cope. Let’s be supportive of each other, including the route each individual takes on the journey of accepting all that our illness means. Let those who hope, hope. Let those who take a different view do that as well. Let’s simply love and accept each other, no matter what. After all, we’re all in this together.

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.

Still here…

Just a quick note to the awesome people I’ve already met who read my blog: I’m still here! I have another post in the works, but a lot has been happening and I’m flaring too badly to finish it right now. I promise to do so as soon as I’m able! Thank you for being patient with me while I battle this flare. I hope you are all having the best week possible. More soon!

This entry was posted on February 12, 2014. 2 Comments

Fear Of Giving In

As someone who struggles with severe, progressive ME, one of the issues I struggle with most is giving in to new lows as the illness progresses. Over the years, I’ve learned this illness is relentless. It will continue to worsen no matter what I do. Sure, I can speed up or slow down the progression some depending on how much I push myself beyond my limits, but in the end, the illness will be worse this month than last month, and next month than this month. That’s just how it is.

So why do I fight it so hard? For the past several weeks I have become aware that my body is pushing for a noticeably new low. I already spend all of my time in bed (when not using the bedside commode) in a dark, quiet room. I already limit my in person interactions with people as much as possible. I also limit my online interactions to a few minutes several times a day. Already, I have been forced to give up almost all solid foods, living day to day on however many shakes I have the energy to drink and the ability to keep down. I’ve given up so much to this illness already. Yet it demands more.

For weeks I have been living on pure adrenaline every waking moment, because I do not want to give the illness what it wants. I cannot bear the thought of losing more of what little I have left. So I push myself. And I pay the price. And all the while the illness tugs at my consciousness, waiting, knowing it will soon get what it wants because I can’t live on adrenaline forever. I am exhausted, and not just physically. Emotionally. I am tired of playing hide and seek with my ME. But I cannot just give in, because what I give I never get back. I know, I’ve tried the whole “living within your energy limits thing.” It works for some subtypes of ME, but not mine. Mine keeps progressing no matter what.

Soon, I will give in. Soon, there won’t be a choice. Soon, the illness will take another level of freedom from me. And I will adjust, and learn to be okay with what I am allowed. And then I’ll go through the same process again, each time finding a new balance between living and not making my symptoms worse than I can bear. I do not know how many levels are left before this illness takes the final one, but I will fight to get as much living done as possible, until all my living is done. In my mind, it’s the only way I win.

Is ME Fatigue?

Fatigue. It is hands down the one single word people most often associate with ME. But should it be? Is it even a defining feature? No!

As with any other neurological illness, people with ME experience a wide range of severe symptoms. These include but are not limited to: severe Central Nervous System damage, brain damage, brain lesions, seizures, paralysis, digestion issues, severe muscle pain (caused in part by a buildup of lactic acid), sleep reversal, insomnia, breathing difficulties, sensitivities to medications, sensitivities to chemicals around us, extreme sensory issues (inability to process light, sound, touch, scent, movement, etc), vision problems, severe cognitive issues (difficulty with or inability to speak or understand speech, or to read, write, problem solve, plan, or even recognize where they are or the loved ones who surround them), etc, etc, etc. For a more complete list of symptoms associated with ME, check out the page ME Symptoms.

So why bring up fatigue at all? I believe this is a crossover from the completely different, but often incorrectly linked, illness Chronic Fatigue Syndrome (see my recent post on this for why and how these diagnoses are not the same). Does fatigue exist in ME? Yes! But not the way most people think. Fatigue in ME isn’t feeling tired after a long day at work. It’s not even feeling tired while battling a cold or flu. Nor is it having sore or painful muscles following exertion. That’s normal. Fatigue in ME is complete and total exhaustion at the cellular level. It affects every part of you, body and mind. A person with ME will actually be weaker and perform worse on successive days of exercise testing – this is something that is present in no other illness (a healthy person’s performance will gradually improve as muscles build and the body becomes more efficient). In addition, one expert I recently read stated that the levels of lactic acid (a pain-inducing chemical produced during exertion) in the average ME patient’s muscles at rest are comparable to an athlete’s levels while running the Boston Marathon. You know that aching pain you sometimes feel in your muscles the day after exercising too hard? That’s us all the time, and worse.

It is important to note that not everyone with ME has fatigue all the time. Most of us do, but it is not a requirement for diagnosis. What happens with ME is that our body is struggling (and failing) to maintain homeostasis even while we rest, so whenever we exert ourselves (physically or mentally) there is a domino effect that leads to profound physical and mental exhaustion. This exhaustion typically has a delayed onset, beginning 24-72 hours after exertion, and may take days, weeks, months, or even years to resolve. Sometimes, if the person is ill enough or the exertion extreme enough, recovery to pre-exertion levels is impossible to ever achieve, and the person is forced to adjust to a new low of “normal” for living.

That said, fatigue alone should never be used as a defining feature of ME. As mentioned above, ME is sooo much more than just fatigue! You wouldn’t define MS, cancer, Lupus, or AIDS by fatigue, and yet all of these conditions cause varying levels of fatigue as well. Just like these illnesses, ME deserves to be known as a larger picture of what it is, not as fatigue alone. The one, core defining feature of ME is damage to the Central Nervous System. It is the key issue behind everything else, the one thing every ME patient must have. It is not fatigue, but it causes fatigue, among many other severe (and sometimes life threatening) symptoms. Let’s spread the message that ME is not fatigue. ME is not feeling tired after exercise. ME is not feeling like staying in bed when you could go out. ME is severe dysregulation of and damage to the Central Nervous System, and it deserves to be recognized as such.

What Is Hospice, And How Does It Help?

I mentioned in an earlier post that I currently receive hospice care. As a severe ME patient, I know how lucky that makes me. I know the vast majority of people who have this condition like I do are left stranded with no care at all. I’ve been there myself, and it’s a terrible place. I am incredibly lucky to be receiving my current level of care, and I long for the day when all ME patients, regardless of severity level, have access to health care as wonderful as mine.
For those who may not be familiar with the concept of hospice, I wanted to explain. Generally speaking, hospice is a special service that gets called in to care for people whose doctors sign a form stating they may have six months or less to live. This care usually takes place at home, although occasionally hospice patients may stay in a specialized facility for short periods of time (sometimes this is done to give family and other routine carers a few days’ rest). In my case, all care is provided at home, since being transferred to and placed in a facility of any type would be sheer torture, and could end my life in and of itself.

Let me take just a moment here to say, hospice is awesome! This is a group of people who give all they have to make end of life care the best that it can be. They truly love their patients, often allowing a strong bond to form despite knowing the person will die soon. Hospice teams specialize in palliative care – that is, care which focuses purely on making a patient more comfortable when a cure is no longer possible. Some individuals are under the misconception that hospice workers hasten death. This just isn’t true (not to mention it’s illegal). They will not hasten death, but they also understand there may come a time when someone is so ill they no longer desire life sustaining measures (oxygen, feeding tubes, etc), and they will withhold these things without making the patient feel guilty if it is truly what a patient desires. Thus, hospice workers can be a welcome respite for a dying person, who finds they can be open with their case workers about stuff most healthy people cannot understand.

One way in which hospice care is greatly undervalued is the way in which they help the patient’s family. Not only does hospice specialize in helping smooth the process when it comes to the practical issues of dying (living will, power of attorney, any special funeral wishes, etc), they also have social workers who specialize in helping loved ones deal with the stress of caring for a severely ill person, as well as the grief after that person is gone. I know my husband has benefitted tremendously from having a listening ear – someone who understands what he’s going through and can offer non-judgmental compassion and advice. This also helps me, as it makes me feel better knowing my husband has a solid support system in place. Caring for someone with severe ME is particularly trying, so I’m glad he has someone to talk to who understands.

There is so much more I’d like to write. Unfortunately, health constraints make this impossible. I just had to take a moment to give credit where credit is due. My hospice team has been all I could ever want at this stage of life. They have taken time to study my condition (which none of them had heard of prior to meeting me), are careful not to make their visits any harder than necessary on my body, and have become the closest thing to friends a medical team can be. And while I’d like to think my team is special, from what I’ve heard, this level of care is the norm for hospices across the country – and perhaps in some other countries as well. Many times I think people are afraid when doctors recommend hospice for a loved one. They feel it means the end is near. While this may be true, trust me when I say hospice will not hasten death. They will only make an individual’s remaining life the absolute best that it can be, however long it is. That said, if you or a loved one have the chance to receive this form of care, take it! You can always leave if you get better (or for some reason decide you no longer want it). And to all the hospice workers out there: thank you. Thank you for doing what you do, and doing it so well. My life, however much is left of it, would be so much worse without you! Keep up the awesome work!