Archive for the ‘Health (or lack thereof)’ Category

Identity

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.

Things That Have Been Helpful

Tuesday, June 7th, 2011

There are a lot of hits here now looking for CFS stuff.  …Which is neat, but also very frustrating, since I have been slowly compiling lots of useful information, but am really not yet well enough to write it all up, or even compile a comprehensive set of links.  So… someday, when I’m better, I would dearly like to compile together a bunch of the information I’m collecting about CFS, and some of the documents I’ve made to take to doctors, reviews of books that were actually useful (and warnings about the ones that were crap), etc. and post it here so that maybe someone else won’t have to do some of the work I did. In the mean time, though, I thought I might as well throw up at least a few of the things that I have been finding most useful, despite the fact that I’m not currently able to make in as complete a resource as I’d like, or write it up all fancy-like. Call it a step in the journey of unlearned perfectionism. Or call it Bob. I don’t really care.

Some of these I may have already posted here along the way, but I figured they were worth mentioning again in one place. I will also say that I’m certain there are TONS of other things out there that are also great but I don’t know about yet or haven’t been making use of personally. My research got a little cut off by the sudden drop in functioning. If anyone stopping by can think of something they found super useful or enlightening (and credible), feel free to leave a link in the comments. I know that a lot of these are obvious to anyone who has experience in the CFS world, and I don’t expect any of it to be ground-breaking.  Can’t hurt to put it out there, though, just in case someone can use it. I’ve focused on the CFS side of things, but there is a lot of overlap in what’s relevant for CFS and for Fibro, so I’m sure these would be of use to people with Fibromyalgia too.

In addition to the Canadian Consensus Document and the Myhill book/site, which I have mentioned before (and have found very useful), I would suggest people looking for answers consider Teitelbaum’s site (and/or book) and the free program there to assess your symptoms and suggest treatments for them, and possibly this book by Alison Bested and others, which has a little about the practicalities of living with this (energy conservation, disability claims, etc.).  I would say Consensus document for the physical overview and research summary (though slightly outdated), Myhill for some hard science and testing suggestions, Teitelbaum for more treatment suggestions (his approach and Myhill’s are very similar) and supplements, and Bested for a few odds and ends not covered in the other two.  Much of the core information across different resources is the same, which says good things about it’s credibility.  It does mean there is some overlap between good resources, though.  This book by David Bell is a very good look at the likely physical process going on and causing problems, though it is very scientific (a plus for some people and I imagine a minus for others) and is not really intended to provide treatment suggestions so much as raw information.  I liked it though, and was pleased with the purchase.  Cannot say the same for many of the other things I bought.  Myhill, Teitelbaum, and Bell are all doctors whose names seem to come up a lot in CFS circles.  They’re part of the small group of people really working to make progress with this, and I would trust their judgment in most places.

For “resting” periods when I’m not supposed to be doing anything more than meditating or thinking, I invested in a few CD’s.  There is a lot of actual science to back up the Health Journeys guided imagery CD’s if they are used correctly, and I’ve found this one useful.  I am also really liking the self-hypnosis ones by Gurgevich.  Both guided imagery and self-hypnosis give me a little more to focus on than strict meditation, which makes them feel like less hard “work” when I’m mentally drained.

This page was pointed out to me by someone, and though it was written by someone with Lupus rather than CFS, has been an easy place to direct people wanting to understand the concept of energy conservation.  I was also sent a link to, of all things, a Golden Girls episode, but it actually does a really good job of bringing across what it’s often like to deal with doctors when you have CFS (the doctor in New York, in particular, seemed far too familiar to me).  Sad that not much has apparently changed since the time of that show.

And just when you thought you had this sort of figured out, here is an article that mentions one of the “outbreaks” of CFS, where something triggered the illness in multiple people at the same time.

Tips for the Newly Diagnosed:
1) Learn as much as you can on your own, because sadly in 2011 as I write this, unless you get in to see a specialist who deals almost exclusively with CFS (really – not just a regular rhumetologist or anything) you will probably end up knowing more about this than your doctor does.
2) Make sure any sources you’re consulting are credible, and double or triple check their information against other sources you also find credible. But don’t rule anything out because it focuses on a more naturopathic approach, herbal treatments, diet changes, and non-standard tests. Supplementing various pieces of the puzzle is huge in treating this stuff, and comes with very scientific backing.
3) When you get that gut feeling that you are probably doing more than you should be, STOP!!! Rest. No matter how bad you think things are already, you can still get worse. And you don’t want to.
4) Pride is for suckers. Learn to accept help when you need it, and to decline invitations that you really can’t handle the strain of accepting.  Consider the idea of adjusting your activities to conserve energy (sitting down when you need to, or even having someone push you in a wheelchair if needed), even when it draws a little extra attention to you or makes you feel silly/embarrassed (this is hard. I know).
5) Your energy is now precious, and limited. Practice spending it only on the things that really matter to you. Cut down expectations on yourself to do everything as fully as you might otherwise be inclined to.
6) I would also add in that anyone bedbound for more of the day than usual should spend some of what energy they have doing range of motion exercises, particularly for the knees and shoulders.  I thought that I was okay since I hadn’t been out of commission for that long, and because I was still moving around some.  Not so much.  So I would advise anyone in the situation I was in to start early with those things to prevent problems rather than waiting until the joints start cracking, grinding, and doing things they shouldn’t. Just don’t push it so far that you’re wiped out the next day. You may need to cut out other activities to make these possible, but they’re important.
7) I would also suggest asking a doctor about any organizations in the area that might be able to help provide services (in home physiotherapy, meal delivery, housekeeping services, assistance with wheelchair costs, etc.).  It seems like there is a lot out there in many areas that people just don’t always think to connect you with.
8 ) If your brain is shutting down sometimes, try lying down more. It tends to help (which makes sense, as often this seems to be a blood flow to the brain issue).
9) If your short term memory and concentration are shot, try a soft-shell binder (lighter than the hard kind) with dividers in it so that you can jot down notes for yourself in whatever sections are relevant for you. Mine has to-do lists, shopping lists, phone numbers, things to mention to doctors, etc. I keep it beside me with a pen clipped on, and it has done a lot to prevent me from writing the same note to myself fifty times over and then never consulting it because I’ve forgotten it was there.
10) Trust your gut. You are not crazy. You really are ill. And you’re not alone in this.

Edit:  Updated with a comment below with a few additional resources I’ve found useful.

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.

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.

Public Service Announcement

Thursday, May 19th, 2011

I was going to try to write a little something completely unrelated to this, but I just noticed that I have started to get search hits from people looking for things like “patients with extreme sensitivity to SSRI’s or other antidepressants” or “why are some people so much more sensitive to side effects from medications than others”. These are things that I had wondered myself over the last couple of years, and I say to anyone searching for that type of information…

Please, please, please, take a quick look at Chronic Fatigue Syndrome (this site is exceptionally credible, and also fairly comprehensive. Often the short lists of symptoms just don’t cover it for this)!

Unusually strong reactions to medications (particularly those that affect the brain) is EXTREMELY common with CFS. So are paradoxical reactions (for those people who instead got here with “antidepressants make me more depressed”. If you’re sadder while taking antidepressants, you might want to check out CFS too. Same for those of you who typed in “my doctor says I’m depressed but I don’t feel sad”.  I don’t know if I would have believed that was what was wrong with me if I had read that document years ago, but I might at least have had it in mind later when I also started to have random pains, and digestive troubles, and hormone irregularities, and pounding heartbeats sometimes, and, and, and…

If there is a lot of (possibly minor) weird random physical stuff going wrong with you, please investigate this. It may not be what’s wrong with you, but it can’t hurt to be informed for the future just in case. If it does end up sounding right, it can be hard to get a diagnosis (especially before you’ve completely fallen apart), but the earlier you know, the better. If you know you’re a hypochondriac, don’t read it. But if you know in your gut that you aren’t, but sometimes feel like one because of everything you’re experiencing, I would suggest taking a look.

And doctors, if your patients are reacting in bizarre ways to your medications or claim to be more wiped out by side effects than anyone you’ve seen before in your career, please look into whether this might apply to them before you right them of as anxious or imagining things. Early intervention can salvage huge amounts of a person’s quality of life.

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?

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.

I’m not actually stalking you. I’m just breathing heavy.

Monday, May 2nd, 2011

Don’t want to write too much, but I did want to reach out. Having you all out there has been helpful for me.

So…Yeah. …About that “maybe I’ll feel better next week” stuff.

So as it turns out, I am not better. In fact, I am worse? Did I think there was a step worse than not being able to type because my hands run out of steam and the muscles cease to function? No. But I am that much more enlightened now.

I have been and am trying not to let on how bad it really is over here. I tend to downplay bad things by nature, and it’s a tough habit to break. But it’s…um…pretty bad. I was crawling (badly) across the floor the other night because I literally couldn’t stand up. That was a scary moment. I can’t walk normally. I need my husband’s help to get up from a seated position. He helps me get dressed in the morning because my limbs are pretty dead and unresponsive except with great effort. And even then I’m out of breath by the time we’re done. I spend most of the day lying prone, but not sleeping. We have been joking that I’m like a houseplant now. Except I need to be watered more often. Which I’m really hoping for. We’re not historically good with houseplants.

It is a difficult thing to be COMPLETELY reliant on somebody else for basic life necessities, even when that person is very dear to you and you trust them with your life. I’ve had a couple of breakdown moments. But I guess that’s pretty par for the course. I am beginning to lose the certainty that this would be a temporary situation and that my recovery to at least partial independence would be as swift as the downturn that brought me here in the first place. In the back of my mind I am still clinging to the hope that within a few weeks I will be back to being fine.

Eventually, I may need to write an e-mail to those of you who are going to Halifax. I have been putting this off. And not just because I’m not feeling up to writing it physically.

On the plus side, we’ve located a test of mitochondrial function from the UK that we can actually get done. …Which hopefully will say definitively whether Chronic Fatigue Syndrome is actually the issue here.

Which it really better be.

Because if I didn’t know about CFS, not being able to crawl across the floor would be scaring the shit out of me.

Really. A lot.

A lot.