Note: I am not a medical professional. The contents of this blog are my opinions and experiences. Always consult your doctor before making any health decisions, and always educate yourself about your conditions and their treatments.
"I will never [chronicillnesscat] 'get well soon'"
And, you know, that's okay. Really. It isn't great and it certainly isn't what I wished for, but I'm dealing. And part of what helps me deal is people around me understanding that and saying something like "I hope you get through this flare quickly and easily" instead of "get well soon."
Check out, follow, and contribute to Chronic Illness Cat on Tumblr. Here are some of my favorites:
“Innocently read story about American Health Insurance; Spend rest of day in fetal position under desk, obsessively adding up the cost of your meds.”
“'Oh, I wish I could stay home all the time! That would be so amazing!' Yeah, it’s fantastic. I love not leaving the house for days at a time. Because I can’t.”
"I think I get to a point where I find a happy balance and then something else sets my health issues off and everything goes haywire and I can’t get my body back on track regardless of what I do."
Read the full article by Sandy at FightingFatigue.org.
This is me this week. This is me right now. I've been having a rough time of it and I can't seem to get through this flare because it seems that every single day something else happens that pushes me right back to where I started. Tonight I'm debating with myself over whether or not I should attend a class tomorrow morning and I think I'm going to have to accept that I shouldn't because if I do it's going to set me right back to where I was at the beginning of this flare and all my recovery will have been for nothing.
In a way, I've become ruthless in my prioritizing. Today I did nothing. I turned off my phone, didn't check messages or answer emails, I just rested. I had to because for the past week I've been neglecting my healing in favor of achieving and all I really achieved was a harder, longer flare than before. I'm even getting past the guilt for not being always available, much as people seem to expect me to be. Sometimes things can't be dealt with in one day. Sometimes they can't even be dealt with in one week.
Other times I think I show a complete disregard for my health. As soon as I show the slightest improvement my instinct is to jump right back into things. For instance, I was very nearly doing math homework at midnight tonight because it was the first time I've felt well enough in days. That isn't good for me. That sort of behavior will knock me down and leave me in bed for days.
It's a process, right? I hope it's one I can learn to navigate.
well I tried to make it Sunday, but I got so damn depressed
that I set my sights on Monday and I got myself undressed
--Sister Golden Hair, America
If you replace depression with chronic pain and illness, that's how I feel all the time. Each day I wake up, intending to do things. I might have a class I'd like to attend, or I might want to go to the gym and swim, or go grocery shopping, read a book, watch a movie, or just plain get out of bed. But on so many days I have to give up, get undressed, and get back into bed because I'm just too ill to do any of the things I want.
I'm always setting my sights on the next day, and the next, and the next. It's a difficult way to live your life. It's hard to get up when you know that you stand a very good chance of not being able to accomplish any of the things you intend to. It's hard to realize that your intentions don't matter and that your body may very well betray you. It's just hard. That isn't the hardest part for me, though. The hardest part is resetting my desires every single day. When I go to sleep at night I tell myself that tomorrow is another day and another chance to do things. Every morning I wake up believing that, despite how many times I fail.
For me, there's a certain amount of unavoidable helplessness that comes along with chronic illness and disability. Or at least there's a feeling of helplnessness because there are things that are out of my control. Snow removal brings all this up for me. Right now, in New England, we are covered with snow and more and more keeps coming. You can barely see my mailbox above the snow piles at the side of the road. Because of the nerve damage that causes weakness and pain in my arm, back, and legs, snow shoveling--or snow removal of any kind--is something I can't do.
Normally, my husband does it for me, or we hire someone, or any combination of things happens to make it so I can get out and around. This week my husband is in India and the snow was pouring down when he left. There's about a foot of snow in my driveway, on my car, on my front porch, and there isn't much I can do about it. One of our neighbors happens to run a landscaping service and he plows for us. He's a great guy, he knows what's up with me, he's going to keep an eye out while my husband is gone and make sure I can get out and about.
But here's the thing. I can't control this. He subcontracts plowing for a company and is out doing his job for them all day long. This means that today I couldn't get out of my driveway. I still can't, now. I've let him know that he can come any time at all but that I have to leave for the hospital for tests at 9am tomorrow. Now all I can do is wait. I have to count on someone else for this and it's bothering me hugely. I want to know for sure that I'll be able to get out of my driveway tomorrow morning, and I can't.
Helplessness. Depending on others. I don't do that well.
Even with the best care and precautions, we can’t always avoid the storms of our illnesses. There is no rhyme or reason to when the storms come and we always have to be prepared.
Every task we do from the moment our feet hit the floor in the morning (if we can get out of bed), until we go to sleep at night revolves around trying to keep the storms at bay. We always make sure we have extra medications, extra pain creams, extra remedies of some sort, to get us through the day. We are always in fear of the dreadful bedridden days we have experienced, so we are extra aware of everything that sets off our symptoms.
Read the rest at CFS & Fibromyalgia: It’s A Winter Storm Every Day
Sandy at FightingFatigue.org posts about the invisibility of ME/CFS & Fibro.
How many other illnesses do people have to explain why they:
It is only with invisible illnesses like CFS, Fibromyalgia and related diseases that we have to go through all of this crap with society, doctors, employers, friends, families, and everyone over and over again. ... We don’t have anything to be ashamed about and there is no shame in telling someone you have ME/CFS or Fibromyalgia. They are REAL illnesses that affect millions of REAL people everyday. I know that people are sometimes afraid to mention what is wrong with them and I used to be like that because I would worry about what people would think. But I don’t feel like that anymore. Knowledge is power and the only way people are going to learn about us is from our stories.
...That ever-annoying question that us chronic pain sufferers hate to hear: “What is your pain level today on a scale of 1 – 10?” I know that it is the therapists’ and doctors’ jobs to ask us that question, but they don’t realize how difficult that can be to answer. For me, and for many of my chronic pain peers, trying to rate the level of our pain is like a ME/CFS patient trying to rate the level of their fatigue. When you are exhausted all of the time, day in and day out, it always seems like the fatigue is bad. When the pain is there all of the time, day in and day out, it’s hard to rate it and it’s hard to pinpoint exactly where it is coming from all of the time, too. [Source]
Wow, do I ever relate to that. The way I measure both pain and fatigue has changed since becoming ill. When I'm asked if something hurts I find myself thinking "it hurts less than my PHN so it's okay," okay, of course, being a relative term. As for my fatigue, I'm always tired, always exhausted, a good day is a day when I get out of bed despite the exhaustion.
It's particularly troublesome for me when it comes to measuring pain. Doctors need to know when you're in pain and how much pain you're having. This came into play during my lumbar puncture when I was told there would be a moment of pain, a "zing" going down my spine and down one leg, and that would be the moment the needle was in the right place so I should tell them. But I didn't recognize that moment. Sure there was pain. But there was less pain than I'm used to having from my PHN so at first I wasn't sure. Was it a twinge? Was it pressure? Was it that zing we were waiting for? It was and we finally figured that out. But I probably could have spared myself the second moment of pain had I been able to recognize it the first time.
Andrea at It's Time to Get Over How Fragile You Are quotes her friend Kimberley on how people view the chronically ill: "People know that with cancer or aids, people either die or they are okay. Either way, they don't have to deal with that person's illness anymore. With us, it's not going to kill us. But we have it forever".
That's it, you know? That's what it is. When people are sick they are supposed to either get better or die. You are allowed to take time to get better or you are allowed to take time to die, but what happens when you do neither? Is there much in our society that allows for the chronically ill who need to take time, time, and more time, yet never get better and never die?
I can see it around me. It's in every "I hope you get better soon," which means well but doesn't account for the fact that I won't get better, not soon and likely not ever. It's in every accomodation that's made for me that has a subtext of when can we stop doing this. It's there every single time someone asks me what I can do to make myself better or more able to function.
I'm chronically ill. I don't think I'm going too far in saying it's worse for me than it is for those of you interacting with me. You may be losing patience or at a loss for what to do because I'm not getting better but I'm not dying, but think of how I'm feeling. If you don't have a blueprint for dealing with someone chronically ill then why on earth would you think I have a one for dealing with being that way?
The Question of the Week at Oh My Aches and Pains! is something that's come up quite a bit lately in my life: How Do You Plan for Special Events?
'Tis the season, as you know, and I've been trying to socialize with my family and friends as best I can. I'm also going to school and still riding the doctor-hospital merry-go-round. Frankly, I'm busier than someone with my health condition should be. I've mentioned before that people don't fully realize the planning that goes into my life, so I'm going to give you an example.
A few weekends ago my family and I went to the Jack O Lantern Spectacular at Roger Williams Park Zoo. Planning for this event, I knew a few things: it's a walking trail; it was outside; it would be chilly. The first thing I did was tell my family that I couldn't participate in any other events that day otherwise I would use all my energy prior to walking the trail. The second was to plan to dress in layers so as to stay as warm as my body needed to be so that the temperature wouldn't exacerbate my symptoms. The third was to spend the day before and day of the event resting. I slept as much as I could, I napped, I stayed sitting or lying down.
During the event I walked slowly and sat down as often as I could. Sometimes a family member sat with me, sometimes I sat alone. Everyone knew approximately where everyone else was, there was no rush. Because of other complications we didn't go to dinner afterward, as we had planned, but that worked out well for me because I was far too tired by that point.
I also knew that going to this event would make me extremely fatigued afterward and would lead to an episode of post-exertional malaise within the next twenty-four hours that could last for another twenty-four. This meant I had to do any assignments, chores, errands, etc., prior to Friday because it was likely I wouldn't be able to do anything at all until Tuesday. Not unexpectedly, I was sound asleep not long after we arrived home, was tired all Sunday morning and early afternoon, and by Sunday afternoon the post-exertional malaise had set in and I was in pain and exhausted (and asleep!) well through Tuesday.
Bet you didn't realize a few hour trip to see some pumpkins actually took four to five days of my time, did you? That's how it is for me with CFIDS/ME. And it's exhausting.
