Archive for the ‘Struggles’ Category

Moving my shoulders, ever so slightly

Wednesday, November 6th, 2013

Things aren’t usually vividly hard anymore.  I’m generally careful to judge everything by where I was at my lowest, which can turn even the most limited of days into hope.  That worst year or so was so truly, completely awful that anything that isn’t that becomes cause for celebration.   Walking to the bathroom without trouble, and without having to call my husband in to help me back up?  That is beautiful.  Setting aside the timer that used to ring periodically so someone else could roll me over to prevent bedsores…  These things give me reason to believe that life will be better for me someday, and that’s precious.  It might not.  I acknowledge that my hope comes from a place of determination and desire rather than statistics.  This illness is more often a roller coaster than a ski lift.  But it’s enough.

I don’t often break out in tears anymore, actively mourning for the things that I’ve lost.  Early on there were so many times where I was faced vividly with such a new and completely intolerable set of limitations that it would take a moment just to get through the realization.  I wanted to go outside, and I couldn’t.  I wanted to have a snack, and I couldn’t.  Being reliant on other people for such basic things was a brutal adjustment, and it got to me sometimes.  The big things were hard (career, kids, vacations, goals, life plan), but in some ways the little things were even harder.  More immediate.  And at that time, the journey was generally downward.  I had no idea whether I would be so trapped forever.  My condition was very severe, and many people who get so low do not come back from it.  Every day was worse than the last, and that’s a very difficult place to feel anything but lost.

I tend not to have those overcome moments anymore.  Maybe there just aren’t that many new surprises to catch me off guard.  They say that human moods are all about reaction to change, and I can see that holding true.  If your current situation is better than it was recently, then you’re happy.  If it’s worse, you’re upset.  But after a while of anything holding steady, we go back to our baseline.  Lottery winners get sad again, and people in poverty smile.  The things that used to be so striking to me and served as vivid reminders of my lack of independence go mostly unnoticed now.  I live on the couch.  I don’t cook my own meals.  I don’t wash my own hair.  I don’t have many of the things that used to define my life.  But it doesn’t stand out to me unless something draws my attention to it.  Holidays and special occasions are difficult, because it’s almost impossible not to make comparisons to healthy years (someone else recently wrote a lovely post on this.  I don’t know why it always surprises me how universal these feelings are, but hearing my own thoughts articulated by person after person still always strikes me somehow.), and now and then something will pop up and remind me this is not the life I expected.   But in the day to day, if I can keep my thoughts confined to my own current reality, it’s not as bad as one might think.

But there are still days where things are more quietly difficult.  Days where I hear a bit of a song I like in the background to one of my snippets of TV viewing, and I want to track it down and buy it, and am daunted by realizing how many years it’s been since I purchased a song.  Days where I realize that I can’t actually listen to it more than a few times, because my head hates that sort of thing more than just about anything else.  Days when it saddens me how silent my world has become.  Days that I’m reminded of how central music used to be to my life, and of iTunes playlists and car radios and music degrees and singing and dancing and musicals and being on stage.  Days when I think about how central music is to self-expression and it feels like losing a piece of my identity instead of just a song.  Days when I sit for a moment and imagine myself dancing.   And my heart aches for a minute with how badly I want more than that.

I still feel my limitations deeply.  I’ve just gotten good at looking away.

Requisite Cliff-Hanger Update

Thursday, June 6th, 2013

Turned out husband had appendicitis.

Terrible dehydration because he didn’t drink anything the night he spent in pain and confusion, then wasn’t allowed to eat or drink anything the full day while they were diagnosing him, and the full night after his surgery he couldn’t have anything either, which means more than 36 hours with nothing at all.

Had some mild complications after coming home after surgery, including a post-operative fever of 104 degrees that led to a trip back to the hospital by ambulance and another hospital stay for some IV antibiotics.

Finally made it home for good, and two of his ribs popped out a bit from his spine, sending his whole back into spasm.  Was super painful, and is still lingering.  Probably something to do with either drug-induced heavy sleeping, or contorting in a waiting room chair, or something his muscles did while he was convulsing from the fever or curled up in pain from the appendix.  Not fun.

Many, many, many nights without sleep for both of us, but he is now kind of sort of getting better.

I am hanging in there as well as I can with no sleep and tons of stress (neither of which are good for keeping this illness at bay).  But I’ve been the full-time caregiver in this house for the past week.  Am doing WAY better than I might have guessed (thank you, Equilibrant!), but I won’t say there wasn’t a point this past weekend where I was literally crying because my husband needed pillows under his legs to take the strain off his surgery site, and I realized they were all the way at the other end of the hall.  And I was lying on the floor, because my legs just would not carry me anymore no matter how hard I pushed.

It’s been a long time since I’ve reached that point.  But this time, thankfully, I recovered some eventually, and it didn’t become my new normal.  I’m resting every second I can, and not doing much else besides sleeping and fetching meals, but I’m getting through it, and I’m reasonably certain that I won’t have any major lasting damage as a result if all keeps going as it has been.  Of course, there’s no guarantee and very little predictability with this illness, but I’m hopeful that I should bounce back.

I have to bounce back.

Please, please let me bounce back.

But he is okay, and home, and safe, and that’s the most important thing by far.

Painful Truths

Wednesday, May 29th, 2013

So my husband was awake all night from severe abdominal pain.

This morning he called the health line we have here, and they advised him to go to the E.R.

I feel awful for him and the rough night he’s had.  I’m concerned for him, of course, but I’m not overly worried at this point. Hopefully it’s nothing serious, and hopefully he’s in good hands regardless.

But it’s been a painful reminder of the impact my own illness can have. My husband is in severe pain, in the ER right now, and I couldn’t drive him there. I am not with him. I am not holding his hand. I am not talking him through it or being his rock. I can’t fulfill my role as the calm-in-a-crisis one. If something serious happened, I wouldn’t even know until somebody got around to calling me, and if they did, I don’t know how I would come see him anyway (though, somehow, I would FIND A WAY). I can’t push my own wheelchair around. I can’t even really sit up for long enough in a regular wheelchair for somebody else to push it around for me. I would need a caregiver.  And my caregiver is my husband.  And wanting desperately to help him isn’t enough to make me able to.

I can’t even entirely help myself.  I don’t even know what I’m going to eat today. Thank goodness there are leftovers in the fridge, and new groceries so there should be things I can grab haphazardly to gnaw on. I’m not well enough to fix myself even a simple meal without payback. I’m getting closer, but I’m not there yet. And if I was ever on my own long enough that the groceries ran out, I would be completely reliant on finding someone else to get some for me. It’s literally not possible for me to get them myself anymore.

I will be fine today, but they’re difficult realizations to have pushed to the forefront.  Wanting something really badly isn’t enough to make my body capable of it.

I cannot care for myself independently. And that’s a damned scary thought.

I cannot care for him either. And that’s so very much worse.

Are you my mom or step-father? You should probably close your eyes, then. This post is broken. It causes blindness. And hives. And it’s full of pictures of regurgitated food. On spiders. Singing Ke$ha songs.

Wednesday, May 22nd, 2013

…Though I suppose that defense only works if they know who Ke$ha is.

Confession:  I don’t even really know who Ke$ha is.  I am seriously out of date on overplayed pop stars.   Defenses failed.

This is going to be a shorter update than I’d like to give, but it’s the best I can do at the moment.  Physically, am hanging in there.  Have been a bit extra burnt lately.  Of course, there are all kinds of things I’d like to say about this, but the fact that I’m burnt already means I probably shouldn’t.  ;) The overall trend is still going in the right direction, though, and I seem to have a more solid grasp every day of how to keep it that way.

Have been under huge strain for the past few weeks, though.  My husband and I are trying to get my mother and her husband out of their current (very poor) situation, and into somewhere safe and secure and where they’ll be okay from here forward.  And that involves moving them.  And we need to do the house purchasing, because they’re not yet in the country.  And we need to find a way to reliably get one of them into the country, which might be difficult (but immigration will not give a straight answer about it or tell us anything about their chances, only “fill out the forms and we’ll let you know in 6 months”).   And we didn’t know that person didn’t already have citizenship until this morning.  And all of the researching and organizing and phonecalls and planning falls on us.  And the whole thing is dependent on a third party, who is impatient, and self-interested, and sometimes volatile.  And we can’t talk to that third party directly.  And the person who can is also sometimes volatile, and prone to despondency and occasional rash ideas.  It’s been a lot of work, and a lot of stress, and sometimes it feels like herding cats, except instead of herding I have to give the cats thousands of dollars and get them to fill out paperwork.

I am leery of saying any more than that here, because I don’t want what I say to be misconstrued.  And I dearly love my mother (she is not at all volatile.  She is made of innocence and rainbows).

Plus, there’s a slim chance that someday they might accidentally find out this blog exists.  And no good can come of cats reading my venting here.

At any rate, I’m just trying to cope at this point.  And hoping very much that this will all be resolved somehow soon.  The rest of my life has sort of been on pause until then.

In which I go from uncertainty to limitations to venting to rambling diatribe

Friday, September 28th, 2012

I’m not feeling particularly grace-full at the moment.  I’ll have my emotional grace back tomorrow.  Or maybe a day later on.

I hate being too much of a downer or a whiner here.  But I guess it’s only natural once in a while.  I don’t mind at all when other people are open in blogging about their own struggles.  I actually really like getting those insights into them, and it would never occur to me to think anything negative about them for it.  I should learn to remember that more.  Sometimes I feel like I can’t tell people the bad stuff.  Some part of me feels like they’ll judge me, ironically even more so since becoming so ill.  People don’t like to hear other people complain.  I worry they’ll be saying “doesn’t she realize how many other people have illnesses too?”  Or think I”m being self-centred.  Or weak.  Or that I’m “giving in” to the illness.  Or assume that I’m just wallowing too much, and that somehow every day of my existence is no longer a struggle.   Or that they’ll be watching to see if I’m going to be one of those strong and positive patients or…that other kind.

It’s funny – when I first started this blog, I titled it Emotional Umbrella, and kept it entirely anonymous, and wrote about all the gory details of things without worrying who was reading them.  Now I’ve made friends through this identity.  And there are people out there who know me as a person and not just as a blogger.  And somehow even though these people are wonderful and accepting, and got to know me by reading all my dirt in the first place, it’s harder now to let the grungy parts show.

But today will be a little bit grungy.

I generally do try very hard to stay positive about things.  I’ve been told I’m doing that remarkably well overall.  I joke, and laugh, and appreciate the good that’s still in my life, and empathize with the many other people going through their own challenges, and look forward to a future with more freedom in it for me. And I try not to look at all the ways in which my life is now less than what I’d hoped it would be.  I do try.

But sometimes this whole situation just feels…really hard.    And sometimes when I least expect it, some of that will come bubbling up, and overflow me, and come streaming down my face for a little while.

I just need to vent today.  There are a lot of things brewing in there that I’ve been trying to ignore.  In some moments, all of this just feels so terribly unfair.  I want my life back.  I so badly want even the tiniest scraps of my life back.  I want to go out for an evening with my husband.  I want to see my friends.  I want to accomplish things with my days.  I want to be useful.  I want to add value.  I want to make my own choices on whether or not to have kids.  I want to leave the house under my own power, and not have other people stare at me, or awkwardly avoid staring at me, or ignore me completely and talk to my husband.  I want to be able to go out without knowing that the people looking at me only see the illness. I want to be able to use a normal fucking wheelchair rather than my monstrosity with its back down and its legs out and its giant giant wheels.  I want to be able to push it my fucking self.  I want to go outside when I want to.

At least I can leave with my husband’s help on rare occasions and for very short periods.  I know that I should be grateful to have that much, and really, I am most of the time.  I know that there are people out there with this who can’t do that much, even if they’re willing to risk payback.  So many people are living their whole life through a window.

I want to be able to handle simple, tiny, trivial things without being run over by a truck for it.  I was wretchedly ill the last couple of days.  Wretchedly ill, like a really bad flu, with swollen glands in my neck, and a super sore throat, and pain in my head and neck, and sweats, and aches, and stomach problems, and that deep exhaustion and weakness and discomfort that comes with any awful virus.  Why?  Because the person who comes normally to give me a bath was off sick this week, and the replacement talked a lot.  The person who comes to give me a bath…triggered intense illness from talking at me.  Putting aside the indignity of the first part for a minute, that second part doesn’t even sound like it should be real. (Seriously??).  And yet it is.  I hate the neurological piece of this.  I hate that thinking and listening and watching and reading have the potential to make me ill, or to take away even what little independence I have left for days or weeks or more.

I want to be able to write things like this without suffering for it.  I want to be able to call someone when I’m upset.  I want to be able to comfort myself with a movie.  I want to distract myself with an outing.  I want to make myself a treat to snack on.  I want to invite somebody over and let the human companionship soothe me.  I do not want to lie here.  I do not want to be alone, and in tears, and without access to any of the things that would once have calmed me. Sometimes that seems like the most unfair.  That the times I most need help and support are the times that I may be doing permanent damage by seeking it out.

I am horribly lonely sometimes.  I miss seeing random people in my day.  I miss my coworkers.  I miss my friends.  A couple of our closest friends have said flat out that they just couldn’t handle it.  One says it just makes her too sad to think about.  They still try to put on a good front for my husband, but they politely put off invitations to come visit including me.  They used to be our closest friends.  They were the ones I would have thought would stick by me.  And now I do not have their support.   They do not call.  They do not write.  Because what’s happened to me is too sad.  And I do not want to admit how bitter that makes me feel on some level.

It’s been a little extra rough lately.  Finding out that the damage could be permanent has been a tough blow, not even just in limiting my potential recovery, but mostly because I can’t justify doing the little things that used to strain my body but help preserve my sanity.  Or when I do, I feel torn up about it. And it makes me SO angry on some level that I was so badly misdiagnosed.  I cringe thinking of all the time I spent pushing through and doing more (even though I KNEW that it felt like the absolute wrong thing to do), knowing now that those actions may potentially prevent me from ever getting a quasi-normal life back.  I’m angry with myself too, for not trusting my instincts or standing up for myself enough to go against what they were telling me to do.  I don’t blame the doctors who did their best, even the ones who didn’t listen, or take me seriously enough, or who gave me terrible advice under the circumstances, or said really offensive things, or implied this was some sort of holiday for me (well okay, maybe I blame those last ones just a bit).  I acknowledge that their training in this is pathetically limited, and that’s the reality all over the world (our country is actually a leader in handling this illness, though we’ve still got a crazy far way to go).  But the one doctor from my University days when this all started, when the symptoms were more straightforward and the clues were easy to fit together, who brushed me off over and over again and couldn’t be bothered making a diagnosis that fit.  Her I hold some animosity towards.  At least for tonight.

I’m fine overall.  But it’s always harder when I’m feeling extra sick.  It means I’m doing even less than I would otherwise be able to, and that’s demoralizing.

And as an extra kick in the teeth, a really nice, supportive, well-researched online article on my condition was sent my way.  And I accidentally glanced at the comments at the bottom of it.  And I was not prepared for the amount of ignorance and vitriol there.  I probably should have been.  But I was not.  We’re just milking the system, they said.  We’re exaggerating.  We’re just lazy.  Everybody gets tired.  If it was really so bad, more people would have heard about it.  If it was really so bad, doctors would know more.  If it was really so bad, no one would ever have mistaken it for psychological.  We’re addicted to being waited on.  We’re afraid to work.  We’re imagining symptoms that are not there.  If I was really so sick, I wouldn’t ever be writing on the internet.

Well let me tell you, ignorant commenters who will never ever read this, that I write on the internet because it is all that I have, and that there are many days that I do not have even that much.  Let me tell you that I am a motivated, responsible, successful, strong, rational woman, who has lived through “normal” levels of exhaustion and aches and pains and illness, and brushed it all off just like you do.  This is not a subtle thing.  It is not something you can brush off or push through.  This is not even in the same realm as any of that.  And the fact that many doctors aren’t up to date about this illness is not evidence for your cause; It is a travesty.

It is real.  And it is that bad.  And you have just made it worse.  Thanks for that.  Who the hell feels that strongly about an illness that they don’t have anyway?  Don’t you have better things to argue about on the internet?  It’s an election year in some countries, after all.

Because the last thing I need when I am feeling this miserable, and struggling this hard, and have lost so many of the people and things that are important to me, is to have you judge me for it, and question that I’m suffering at all.

I am suffering plenty.



Tuesday, August 9th, 2011

It makes me so frustrated sometimes that my insurance company can’t just believe me when I tell them how ill I am, or has to treat me like I’m actively trying to avoid going back to work. Do you know how much I would LOVE to be working right now? How much I dearly want that part of my life back? I want to be able to drive down. I want a desk, and a chair, and maybe a coffee. I want coworkers. I want to be able to have the work life that I had always thought I would.

I was good at my job. And I loved what I was doing at it’s core. I can’t tell you how frustrating it was over the years before I had to leave, just not having the physical or mental energy to do all of the things that I wanted to do. Watching bits and pieces of my social life, home life, and work life slowly fall away because I was clinging on by my fingernails just to try to make it through the day and go on to the next. Killing myself to keep doing the things that needed to be done. Sacrificing my health to keep doing great for the kids, but still dealing with the stress of coworkers who were frustrated with me for not having the energy to do more. Feeling like it couldn’t possibly be so HARD for everyone else, and wondering how they could run an errand at the end of a work day. Not knowing how that was possible, when I could barely get myself home to fall onto the couch.

I know now why it was so much harder for me.

And I miss it.

Every day I miss it.

I still look at things through a teacher’s eyes.

And yet I also know that I could never handle that level of stress and demands with this illness. It is a wonderful job in its way, but a very intense one. High highs and low lows. Which makes me wonder, even if I do recover, if I will ever truly be able to go back.

But I want to.

And so it saddens me today that I’ve realized somewhere along the line I have stopped telling people I’m a teacher, and have started saying I “used to be a teacher” instead.

Wallowing. …But just for a minute, I promise.

Thursday, August 4th, 2011

I watched a TV show today in which someone tried to live as a paraplegic would for a month, confined to a wheelchair. As they went through it, they spoke with people who had been in accidents of various sorts, and who were trying to come to terms with their new reality. So many of the sentiments of what they said felt so very familiar.

I wouldn’t have thought I could handle it. But you do somehow. Because you just don’t have a choice.

There are times that you shut the door at night and just break down for a while. But then you get back up and keep going. Because you have to.

All you can do is try to be as positive as you can. Because otherwise you’ll never make it through.

There are so many times that some part of my mind is still thinking that surely I’ll wake up any second. That surely this is all a dream.

It happens so quickly, and you realize that it really could happen to anyone. They’re just regular, able-bodied people who aren’t able-bodied anymore.

You hear a lot about people this happens to at first…and then you just stop hearing anything about them.

Don’t assume that they don’t want you to ask about it. They would rather you ask than you assume.

A lot of friends just stopped coming by. The chair is too hard for a lot of them to deal with.

I find, though, whenever I watch things like that, that I can’t help also being struck by the differences. And I’m not for a second saying that it wouldn’t be horrid to have a spinal cord injury. It would be awful. And my heart goes out completely to anyone who has to struggle through that. I wouldn’t wish it on anyone. It’s just that parts of watching their experience also drew attention to some of the really difficult pieces of my own existence right now. I try to focus on the positives, I really do. And I hope that venting this doesn’t negatively affect anybody’s perceptions of me. It’s just that some days and some moments things manage to creep through for a while. And I thought that trying to write them down might be a more productive way to handle this than marinading in them on my own. I preface this knowing that it could be much worse. I think often about how lucky I am in so many ways, and how many people with and without this disease are SO much worse off than I am. I truly do value everything I have going for me. And at least I have hope. Six percent is a heart-breakingly small statistic for recovery, but it is something. And though by most accounts more than half the others stay the same or worsen, there is another group that has at least a partial improvement. I may yet get out of this (and I had better, because I’m not sure that I can handle the alternative). But that doesn’t mean now and then it doesn’t get overwhelming, you know?

There was this whole team of rehabilitation workers filmed in the show who were helping the newly injured adjust, teaching them how to be independent, and wishing them well, and sympathizing about how hard it must be.

People finding out what had happened to them immediately had a sense that was awful, and responded largely with sympathy. Most people finding out what has happened to me have no idea what the ramifications are. Many think I’m basically fine.

They went to a support group for people going through something similar. They could go to that. There was even one for friends and family, since there is an amazing amount of strain on people close to someone disabled, who suddenly find themselves in a caregiver role.

The people with some use of their arms could work out the muscles they still had use of, to try to compensate for other limitations. I can’t work out ANY part of my body that way without making myself sicker. Maybe it’s odd, but this was one of the things that struck me most. I guess it would just be amazing to be able to work hard and have it make a difference. The only thing I can really actively do to get better is to do nothing. Which is an incredibly helpless feeling.

Some of them could drive, with the use of their arms. Some of them could push their own wheelchair, and the others could sit up in one, even if they needed to be strapped in. I couldn’t. I am completely reliant on my husband. Every part of me is defunct to one degree or another, and energy used by one body part comes out of the same communal store. And I cannot stay upright.

They could sit and drink a beer, and eat a meal at a restaurant. I can’t. My body can’t tolerate either alcohol or regular food anymore.

They still had their mind. They could think straight, and talk to people, and consider careers and other things they wanted to do with their lives. They could watch TV without feeling the strain of it. They could read as much as they wanted to. They could type up something like this without paying for it later. They could express themselves whenever they wanted to.

I think it was just extra hard because the thread running through the whole show from these people was that they can still do anything they want to do – they just have to find a way to do it. They could trade hard work for increased independence, and I don’t feel like I have that option right now ,but desperately want it. I just want to be able to DO something. I want to be able to work towards getting better in some active way. I want to figure out how to get around my limitations and LIVE. I want to be able to get out in the world again with everybody else.

Hell, I just want to sit up again for an hour without a problem.

I want to be able to talk to a friend for as long as I want to without knowing in the back of my mind that I’m going to pay for it.

I want to use the computer as much as I want, or read all day if I want to. I want to be able to write this stuff without feeling like my head is about to explode from the strain.

I want to be able to watch half an hour about paraplegics and not feel envy.

Pop, grind, separate, crack, crack, crack.

Thursday, June 2nd, 2011

So apparently the cracking, grinding, popping, separation, pain, etc. in my shoulders and knees isn’t actually a CFS thing. It’s because haven’t been able to use my muscles enough for them to keep the strength to keep my joints in place as they should be, and those two joints are the two in the body that are loose enough to come apart some without that muscle action. Ack.

Who knew that degradation could happen so fast… I’ve only been on the couch for, what, a month? There’s a risk of osteoporosis too in the long term. …I knew this some from one of the books I read, but it didn’t seem like something so immediate. It seemed like I would be well again long before any of that applied to me, or that because I was still moving around and walking a little bit that I wouldn’t have to worry so much. Apparently not.

So now doing anything is dangerous. And not doing enough is also dangerous.

And I am realizing first hand how much trouble I am going to be in if anything else goes wrong while I’m dealing with this illness. I am so totally used to bizarre and random body discomforts and oddities that I really didn’t blink an eye when my knee detached itself temporarily the other day. Just swore a little. The fact that it continued to do so in the following days didn’t even make the list of things to mention in passing to my doctor when I saw her yesterday. It was my massage therapist today who noticed something was WAY wrong. This is a whole other side of badness that wasn’t even on my radar. I really thought that I was starting to get the hang of how much to do every day, because I was now able to avoid most of the pain, and was very slightly better most days than the day before. Now I’m finding out that “successful” rest level is just destroying my body in other ways.

I don’t want to have my joints seize or freeze or detach, or my muscles wither, or my bones get brittle. But I’m also suffering really badly right now from trying to move my limbs around slightly more today because I was scared by the realization that this could happen. I can’t do that much.

This whole thing is really freaking scary.

Edit and Update – March 2013: This post gets frequent traffic, so I thought I would give it a quick update. Cracking joints is apparently a symptom of Lyme Disease, so it’s worth checking that out thoroughly if you’re searching here for this. That said, I do think that cracking, grinding joints seem to be more common and easily triggered in people with severe ME/CFS. I could be wrong, though, since it was really hard to find any mention of it when I was looking. My guess is that it has something to do with the muscles just not having the energy to hold them together right, or possibly there’s some relation to other underlying bacterial infections (since in the end it turned out I likely had bartonella at this time). I don’t know. I do know that the joints all over my body went MEGA cracky before I had fully crashed (literally every movement set off at least one or two cracking sounds, from all over my body), and before there was any pain/discomfort/difficulties in my joints. Also before it could have been related to deconditioning. There’s got to be something more to it.

But in terms of resolving the problem, more movement did help, and continues to. Punching across the chest in front; arms arcing from down at sides, up overhead and ending flat against the bed with elbows on either side of the head; out to the sides like a snow angel; and extending legs from bent knee to straight knee – these were the most critical motions for me, because they prevented the most aggressive joint issues I encountered. I’ve been able to add a little more as I’ve gotten better. Look into Range of Motion exercises. They do help.

BUT…I would never, ever suggest doing an exercise that would cause an overall worsening. I had uninformed physiotherapists and doctors give me some truly terrible advice along the way. Now that I’m seeing an expert exercise physiologist, I have been advised to do only a few reps of a single exercise at a time, then rest in between for 4-6 times as long. I’ve been told to spread out the exercises so that I’m never doing too much in one sitting, and never more than about 30 seconds of activity before a rest. I’ve been cautioned to never do anything “somewhat difficult” (though that would have been anything at all at my worst). If I had known what I know now when writing this post, I would have done maybe one single arm lift at a time, then rested completely for half an hour or an hour if I had to before attempting the next one.

But in the end, it worked out okay. I can move them smoothly now. I still start to get cracking and pain if I skip a day or two of the motions. But in the bad weeks, even just 5 reps of the cross chest ones in the morning and 5 at night, along with one or two up overhead to stretch my shoulders that direction is sufficient. That little bit is enough to keep the problem at bay.

Letting Go

Saturday, May 14th, 2011

I wish that I was able to write here more right now. I think it might help me to be able to chronicle my struggles more in this venue. It’s a sad irony that the times I need to write the most are the times that I am least able to. I’m sure it’s the same for lots of people for lots of different reasons.

I will not say that today has been the easiest day. I’m struggling a lot with coming to terms with how helpless I really am right now in many ways, and how little control I have over my own life anymore (like…dude…I just want to be able to pick out which pair of underwear I’ll end up in for the day so I don’t have to wear the misshapen granny panties if that happens to be what my husband decides to grab). It’s a hard balance, and I know that my husband is working crazy hard just to keep us afloat and keep me fed and watered and occasionally bathed. I have to choose my battles when it comes to where to exert my will and where to just stay silent and let things slide. But it’s a tough adjustment to make, and there’s a surprising feeling of loss that comes from all the little things that you aren’t able to have control over in a situation like this. I can’t straighten things around the house when they’re bothering me. I can’t prioritize which errands need doing. I can’t control how he decides to file tax receipts or health records, or if they end up carefully filed at all (I am a meticulous person in many ways. He hates that stuff. I was always the one who took care of it for us). I can’t justify comment when the pillowcase or towel he chooses for something is totally bizarre, or when I can see my careful care and organization of our household totally turned on its ear (I’m not a super neat freak, but I am very organized. It’s hard to see things all jumbled everywhere. Maybe that says something about my psyche). My hair looks kind of crazy. I won’t get a shower as often as I’d wish. I don’t get to pick out which socks I’ll end up in going out (though I have trained my husband to just reach for something kind of neutral to avoid bigger wardrobe idiosyncrasies than I’m prepared to weather well). I don’t often choose my clothes. It’s amazing how many personal freedoms and venues for personal expression one takes for granted normally.

And I don’t mean to imply by any of this that my husband isn’t being great. It’s just that it is kind of daunting how much time it really takes to take care of two people’s normal duties (even just the essential ones) and another person’s daily needs, so he’s already run pretty ragged. And there is a limited threshold for how much I can try to use him as my hands directly, and where I just have to entrust things to him and give up direct involvement or control. He is not my hands. He is his hands. And he needs to do things his way. And things that were important to me to spend time or energy on will not always be important to him. But learning to accept that and let go of things that were important to me is really hard. And sad in its own way.

It doesn’t help that we’re both pretty stressed out these days much of the time. Sometimes we keep it under the surface more than others, but this is a big adjustment. And scary thoughts and statistically poor prognoses and lack of relaxation time and huge hits to the bank account don’t always make it easy to find a happy calm. Though we’re working toward it.

So this post is not as happy a one as I would normally like it to be. But I’m trying to be honest here as much as possible, and this side of things is definitely a part of the experience.

On the plus side, once I’m feeling better I have a great story to tell you about being stuck in the back of a car for a couple of hours that was initially supposed to be only one, with the sun unexpectedly beating down on me and turning it into a sauna, and lawn maintenance people staring at me, and accidentally setting off the car alarm trying to get the door open for some air (we were running late on the way back from an appointment and my husband had a work meeting he couldn’t miss – they’ve been really great so far about giving him some flexibility to be able to take me to my many appointments so we don’t want to do anything to strain their willingness. I volunteered to wait lying down in the back of the car. He didn’t lock me in there or anything. ;) Yet). The whole time I just couldn’t stop thinking that I wish I had a laptop so I could be blogging the absurdity of the situation. Or maybe I just have a bit of a broken sense of humour. :) Either way, knowing that you guys might someday be able to laugh at my expense made it all that much easier to bear. ;)

And thank you all again for the comments and notes and all of that. I have not always been able to reply directly to all of them, but every one has been just a wonderful help to me. Truly. I don’t want you to think that they don’t mean a ton because if wasn’t able to comment back. Those tend to be the times that I needed them the most. I’m really grateful for the support.

Update – CFS Onslaught

Monday, May 9th, 2011

Thank you for your thoughts. I truly appreciate them, and it sincerely makes a difference to know that you’re out there and that people are thinking of me and wishing me well.  I hope you’re all doing okay – I haven’t been exactly keeping up with my internet reading.  :)

Things are still bad over here. The mental processing is somewhat better than it was (though still not great). Some of the physical stuff is somewhat worse. It varies a bit from day to day and hour to hour. I was doing some research before the worst of it hit about what can be done, and we have some good books from the top people in the field. I am also resting, and we’ve set me up so I don’t have to move much, and we invested in some guided imagery and self-hypnosis CD’s, so even if my physical state doesn’t improve, by the end of the month I firmly expect to be able to move things with my mind.  We have arranged to have the special blood test done and sent to a specialist in the UK at the end of the month, and I should be starting a treatment protocol after that. If it is CFS for sure, then there is no easy cure or single restorative medication, but there may be some hope for an eventual (if possibly limited) recovery. And I still very much plan to be the exception to the statistics.  I have learned a ton about it, and am continuing to take in more information as I am able.

I have some good stories about being manhandled in and out of a wheelchair at the hospital, but I am not able to type them out at the moment.  Somebody remind me once I’m doing better and I’ll regale you with anecdotes about the various times in the last week that I have wryly used the phrase “at least I have my dignity.”   I infer that this should improve once I am able to move things with my mind.

My husband is out selecting a wheelchair right now.  That was a tough blow.  We’re probably going with a rent-to-own, though, so if I’m magically better next week, I will burn/return it and post photos for you.  The rental ones are particularly ugly, though, and scream all sorts of nasty hospital things, so I’m currently trying to devise ways that I could customize it with fabric or something to make it slightly more tolerable (I was thinking maybe like a wrap around thing of some sort for the back or the sides?  Something simple enough that it won’t require much in the way of time or energy – we’ve got enough on our plate at the moment – but that would make it less scary and more mine).  Or add just a touch of personality, so that people know I’m just incapacitated, not entirely boring.    While I poke them with my mind.

This has been hard.  Very hard.  There have been many tears and shattered expectations.  There has been a lot of instinct to attack it full force and having to learn (somewhat abruptly) that my previous approach to challenges will knock me flat now.  I am slowly getting the hang of letting other people help me.  Sort of.  A little.  It has been a lot to process, and I’m pretty sure I still have a lot of challenges yet to come.  But I am dealing with it, and determined to come out the other side.

Preferably quickly.

With my mind.