Posts Tagged ‘Chronic Fatigue Syndrome’

I imagine him or her to be an independently contracting monkey rather than one with a master of some sort.

Monday, September 23rd, 2013

The rubbery layer around my heart rate monitor watch face came apart a while back, and we haven’t yet gotten around to trying to glue it back together.   I’m not sure that I can blame the watch, really, because I suspect the magnesium spray that eats up my muscle aches and twitches may have eaten that away as well.

As a result, I now look down at my empty wrist expectantly several times a day.  I’m thinking I should probably just write a time on there with magic marker and be done with it.

I’ve not been particularly well of late, which was probably obvious by my absence here.  It’s a tough thing to get anything accomplished with only an hour or so of truly functional active mental time per week.  Makes for a lot of tough decisions on where to spend efforts, and a lot of frustration on where not to.  People send me lovely e-mails, and I read them, and appreciate them deeply, and then leave them sitting un-replied-to in my inbox.  That breaks my heart a little sometimes.   Appointments go unscheduled.  Phone calls go unmade.  Pills I’m not sure I want to take anymore continue to be taken simply because I don’t have the energy to firmly decide not to.  Sometimes I try to prioritize what needs doing, but that takes up all my effort and then by the time I can tackle the first item my needs have often changed.  My to-do list grows exponentially faster than I can clear it.

Sometimes my mother calls, and I speak to her briefly and then have to reschedule everything else I thought I was doing that day instead.  Sometimes I feel the desire to Say Something On the Internet, and everything else is a write off for another week or two.  Many times I end up sucked into things that are largely irrelevant – the energy equivalent of paying a monkey five dollars to dance around for me, then realizing five dollars was all the money I had to get home.  But I won’t say that I always regret the dancing monkeys.  Sometimes a person needs that sort of thing.

Besides, it’s not like I’ve got anywhere else to be.

I don’t even know what time it is.

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.


The best laid plans

Thursday, September 8th, 2011

Every now and then I try to take on too much (“too much” in this scenario meaning, like, make a phone call, or attend a doctor’s appointment in a reclining wheelchair, or have a quick visit with a friend who has to let themselves into my house because I’m stuck lying on the couch), and after the resulting crash, I tell myself that clearly I need to pace a little better, and take a little more rest time, and not agree to even little things too close together.

And I rest. And I feel a little better. And then I start to think that maybe my condition is improving. And that maybe now I could surely handle a quick visit with a friend.

I am an idiot.


Tuesday, August 23rd, 2011

This is a decent site for tips for people living with severe CFS (also called Myalgic Encephalomyelitis).

Also probably gives some insight into a few of the functional challenges of daily life, I guess.

CFS Joke

Saturday, August 20th, 2011

Just saw this elsewhere… Probably sad that it’s so true, but made me laugh.

Exercise for People with Fibro and CFS

Begin by standing on a comfortable surface, where you have plenty of room at each side. With a 5-lb potato sack in each hand, extend your arms straight out from your sides and hold them there as long as you can. Try to reach a full minute, and then relax. Each day you’ll find that you can hold this position for just a bit longer.

After a couple of weeks, move up to 10-lb potato sacks. Then try 50-lb potato sacks and then eventually try to get to where you can lift a 100-lb potato sack in each hand and hold your arms straight for more than a full minute.

After you feel confident at that level, put a potato in each of the sacks.


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.

Of Small Progresses and Farm-Based Mammals

Thursday, May 19th, 2011

Some of you who cross over into different areas of my life have probably already heard this news (not that there’s really much news to it, just a general update), so if you have, feel free to just ignore this post. I’m trying to keep as many different groups of people as possible as informed as possible, but I still can’t do too much in any given day. I figured I was probably better off having some duplication but posting to more places more frequently. Reaching out to you all is a huge part of what keeps me going here. If it tells you anything about how much I love you all, I had the option to post this or to try to trim my finger nails, and I chose you. I have some truly epic fingernails going right now. Fingernails long enough that back in the depths of my brain there is a part of me wondering if I should forget about trying to trim them and just alert Guinness instead. Maybe I could get some sort of endorsement deal for them. Pepsi decals on my left index finger or something.

In general, there haven’t been any dramatic changes, but there are some tiny ones, which I figure is pretty good since it has really only been a couple of weeks since I hit what I would consider to be my lowest point so far. I am still not great at not trying to do more than my body wants me too sometimes, but I am trying to learn. I already knew that I kind of stink at not taking on too much, but this has been a whole other level of practice. I’m learning, though, and although my face is a little red and I’m a little out of breath from writing this, I don’t think I’m pushing to the point that I will suffer too badly for it or anything. Getting better at recognizing where those lines are has been a huge step in my recovery, I think. In general, I am feeling slightly better than I was a couple of weeks ago, so long as I don’t do too much or push beyond my current (admittedly limited) capabilities. I am still not super good at limiting my activities as much as I probably should be (but dude, a person can only lie there silently for so long…), but I am getting better, and seeing the results. My capabilities aren’t much better overall, but I am finding that as I rest more and more, I am having less and less active discomfort from them. They are still inconvenient and limiting, but not as painful, and if I am careful to save up my mental or physical energy, I can do a little more with it when I do choose to spend it (whereas before I was pretty much living to the edges of my limits all the time, so was in a constant state of empty). I am learning better not to waste it on things that aren’t important to me, or that I don’t truly need to do, or at least to spend more of it in one place that makes a difference rather than in a hundred little places that don’t leave much to show for it. The difference in that doesn’t seem overly dramatic from the outside (I still have to ration my bathroom trips for when I really need to go, but now I am able to walk a little more easily on the way there; or I can’t type for very long, but I can read a bit longer than before), but they’re big from in here. Every scrap of improvement is a big deal (though I cannot freaking wait until I can sit upright for a while, or use the computer without worrying about it).

Thank you all for your support, and I hope that you will know that if I don’t end up getting back to you about something individually, it is only because I am still working hard at that “not doing more than my body can handle” thing, and not because I didn’t really appreciate what you had written, or didn’t think it was great and want to tell you. I have very often been inspired to comment on things you’ve posted here and not been able to. Sometimes I can just read but am not up to typing. But I appreciate each and every one of you who has sent me advice, or good wishes, or random bovines (okay, nobody has yet sent me random bovines. But I’m waiting). You’ve made a difference to me.

My Cat Apparently Loves Saran Wrap More Than Anything Else In The World.

Monday, May 16th, 2011

Thought maybe I would try to write more often but keep the posts briefer. I’m not very good at that, though, as I’m sure you all already know. :)

The reaching out is tough on me physically right now, but is good for my emotional self, so I’m working towards finding the right balance. As I think I may have mentioned previously, it seems greatly ironic to me that the times I am needing the most emotional support are often the times that I am least physically able to do anything to connect to it.

Our remaining cat is slowly becoming more interested in hanging out with me. That’s helping. …Though the persistent attempts to eat my lunch out of my hands is less so. Particularly since my initial experimentation leads me to believe that she is made of nothing but muscle and determination.

This morning I was feeling better than I have been, although I am also realizing that the standards I use to measure that are kind of a sad statement on their own. I was “better” because I could support the weight of a bowl with my own arm, and because I was able to lie with one leg bent briefly (apparently that takes some muscle energy or something, because it usually makes the leg hurt after a bit), and I reached out to pet the cat as she lay nearby without needing to gather strength to do it or being worried about how much it would tax me. It felt like I had minimal energy in my tanks for the first time in a long time, and it was really encouraging.

…Of course, consequently, I supported the weight of my bowl for a minute, and bent my leg, and pet the cat, and left myself totally wrecked afterward. Oops. It’s still really crazy to me how much I really do have a finite amount of energy to go around. It’s hard to know how much I will need to conserve it to get through the full day, because I don’t feel that bad right away…I feel bad once the overall tank gets low. But then I feel really bad all of the sudden. Literally, there have been times that I have made it to the bathroom feeling great that I was able to do that without suffering for it, only to realize once I was there that a one way trip was apparently all I had in me and making it back again is hugely taxing. Being super crazy careful with one’s energy is much harder than you’d think when there’s no clear indication at the time of how much is too much, and you’re functioning so far below the realm of what you want to be doing. I’m thinking maybe once I can heal enough to be able to sit up when I want to, or type when I want to, or watch TV, or go to the bathroom as many times a day as I want, it will be a lot easier to be okay with that level and rest there for a while. In the mean time, every action is a bit of a gamble…but they also keep me sane.

As a side note, inspired by the comments to the last post, does anybody know of any sites online that will deliver reasonably-priced comfy lounging clothing, underwear, or sleep masks (We actually picked one of these up, but it pushes on my eyeballs and saws on my ears…not particularly conducive to sleeping. :) My sleep is kind of messed up right now, so we thought we might try that in case it helped, at least until we can get some kind of better shades or something for the bedroom. In the mean time, I get to pretend that I’m a 1930′s movie star)? I tried amazon for a couple of things at the start of this, but .ca doesn’t seem to have much selection, and .com won’t deliver a lot of things to Canada (which is weird. Apparently some items are okay, but others aren’t). It’s not really worth it right now to spend much time searching around, but I think online shopping might be the way to go for me for a while. I know that some of you buy clothing online… Any suggestions?