Thursday, April 23, 2009

How are you?

“Life shortening.” The phrase I live with. It means I could die tonight or it means I could live on for several years. When I am likely the third or fourth most expert person with my disease west of Chicago and I will say it plainly, “Haven’t got a clue.” It is impossible that I should still be here, and yet here I am.

How am I? A question I haven’t answered in a long while. I wake every day in pain, which usually means nightmares too (brain interpretes pain into the dreams, today I was run over by a train...but it was a very nice old steam train). I take sedation and pain killers to get my eight hours of sleep. Within two hours I will have passed out again, the slight increase of heat is draining a lot of my strength despite us having two air conditioners going along with fans. Today I woke with a full body scream as my leg muscles went into full spasm/Charlie horse. Luckily Linda was leaving and was able to calm to leg and give me a muscle relaxant. She saves me, so many save me.

I have been in pain in the muscles and the bones, as well as pain on an almost cellular structure. I cannot lie or sit still due to the pain and yet passing out is the only way to stop it. With three different pain killers I can sit enough to read sometimes or focus. Right now I am turned sideways and trying to type through the haze that the pain is bringing; I took these pictures earlier fighting against the nausea and pain before finally falling to the floor to writhe before curling up. That part of that day done.

It doesn’t seem much like living but I am working to keep at it. I have things to look forward to, like the 10K this weekend. They tell me I must not fly. I tell them I fly or throw myself off the railing enough to make it look like flying. I don’t care if it takes all day, I will have this.

Physically, um, lets see, I have much of my right ribs and inter-costal (sic) muscles ripped due to seizures, so that makes it hard to breath, I feel under a weight of stones, buried alive sometimes. As for how my muscles feel, do you know how in gym classes they shout at you that you can do “just one more” until your muscles collapse in quiver. It is always ‘just one more’ and I drop a lot of stuff. But I am not crying, well, not today, or yesterday. That’s just pain, and passing out, and stuff like that. And no one really knows what it is like to be me, or you, do they? They tell us that pain is relative but I never listened enough. Pain and situations are relative and what I have other people think they could not survive (well technically no one can) but I think of what they have endured for years and think, “How do they do it?”

Not just those with disabilities but the AB’s, those who risk themselves, their heart, their emotions in new ventures, in confessions of love, in confessions of limitations. “I cannot do it alone.” Is one of the hardest statements to say. Here I am, according to Linda, with Cheryl and Linda to watch over me. Not exactly the picture I have of myself.

Now this is how I tend to see myself: I am all three, I am the ‘serious’ one trying to get some reading done, I am the one calm and serene with the parasol (notice that one is small and far away) and I am the wild child who has gone crazy on the sunny day with a hose of water. Woo Hoo! Why is everyone such a party pooper!?

With 15 years behind me and new friends coming up and passing the one year mark I have to wonder how much can the lion and the lamb live together, the cat and the mouse. I think, that perhaps some things, like caring, like having desires and wanting someone who gets those desires is universal. Of course, I am the cat here because I have the rocking jewelry. And because Linda has something to eat (hazelnut cheese!).

I am coming to terms with myself, or rather making friends with isolation. I have always been one to jump into things and when I can’t, I instead plan what things I am to jump into. Now, I lie on a bed, propped up and listen to the rain, and try to breath, try to read a little. I try to dream but after a year of trying to remember, it is easier to look backward than forward.

And yet there are people, those with chronic illnesses, who have learned to make friends with themselves and their dreams. So there are dreams that are slower, are more meditative. Maybe they can teach me how to live out the ‘shortened life’ in a way that is different. People didn’t understand what it meant to love something and lose it of choice. Well, see, you need to love yourself enough, that while you caress yourself, you are also strangling the life out of yourself. Because THAT you has to die so the new you can live. How can I learn to shower with assistance, to need help on and off every wheelchair and toilet, need assistance in these things in order to spent my thirty or sixty minutes outside a couple times a week? I choose where I spend what little reserve I have, and I can’t do that by being Elizabeth Fucking McClung. I love her, but her vigor is killing me, her ‘my way, even if it kills me…” WILL kill me.

So I choose to stay indoors most days,I choose to stay in bed some days, I move very little and get as much help as possible so that I do have a choice left. That is what it means. I CAN go out with Linda and Cheryl because I learned to love them enough to realize what real selfishness was: wanting it all without paying the price.

That said, as we took these pictures, Linda said, “Oh, I don’t think I would look that good in a tux.” My heart leapt! “Uh….well, I don’t look good in green.” I mumbled.
“You look great in green!” she said.

“I think you would look great in a tux.” I said. We looked at each other and Linda said, “You know, there is a bottle of champagne in the fridge!”

We were, alas woken by night care. I asked the night care worker, “You aren’t able to assist us with sex are you?” She sort of stared. “I mean moving me to different positions?” I amplified.
“We can’t do any lifting!” she said with a “WHEW!” little laugh. DARN.

Linda is talking about moving to an apartment where I can have a kitten. I am for this except for the packing part. I don’t know if Linda has thought this through since, she is likely to sort of end up with TWO kittens, as hey, if playing with string looks fun, why shouldn’t I do it! Of course, a kitten might mess up my elaborate preparations to meet Linda at the door as she is coming home!
How am I? I am achingly lonely, even when I am surrounded by people who need information whether it is workers or doctors. I think of too much. I think about how these are the same workers who were there when my grandmother’s oxygen wasn’t turned on, and she was suffocating. Are they the ones who might work for me? I think about how she isn’t coming back, not another story, not another question answered. It bounces around in the head. Just like how I went on the MSA and autonomic failure websites and forums and asked some questions and gave some comments and was roundly ignored because…I was a freak. Even for those with autonomic failure, my rate of decline is 3X to five times faster than them. I am younger (people are there to talk about taking care of grandparents...and parents sometimes), I have done everything they say to to: seen a neurologist, seen a specialist of autonomic failure who can say for sure that no, this isn’t the “nice” kind of autonomic failure. But She owns the clinic, has seen thousands if not tens of thousands of people with central autonomic failure and I have that and a bag of fun more and yet...she doesn’t know what this is. That bangs around in my brain, and I am the one outside when everyone else is indoors where it is warm.
You really want to know what I feel like? Once my parents left and I think my brother was supposed to be watching me, or somehow everyone thought everyone else was supposed to be watching me and I was playing with the other kids and then one by one they went home. They had homes. And it started to rain. Until eventually I was alone. And every time someone asked I said, in slightly more hysterical tones that THEY were coming for ME. They weren’t going to leave ME! They were COMING! I was going to go home and be warm and be fussed over, and I wasn’t going to be out here, on the saddest of all places; a playground with no one to play with and pelting with rain. But they didn’t come.

I guess that is part of the looking forward/looking back thing I need to work on; I am trying, and until then, Linda and Cheryl, who know what it is like to have a child, a teen, an adult and an person who can’t understand why they can’t be an equal (Right before they go into a seizure and forget the last two days) are taking care of me. They know what can keep m occupied (sometimes even happy), and sometimes it is rather simple and sometimes complex. But I always try to have cool and matching jewelry! I guess that is the honest answer to “How am I?” are you?


Neil said...

My back hurts from vomiting for 7 hours Tuesday night and yesterday morning (it was an abdominal migraine), and I still can't imagine the level of pain you put up with daily. THAT part of you is not inspiring, it's bloody terrifying!

However, I'm still here, still holding your hand through the joys of teh Interwebs, and still loving you, O Internet niece.

I like the picture of the girl in jeans lying on her bed with a book - I'd like to paint watercolours in that style, but I never seem to be able to make the time. Csn you tell me more about the source of that picture, please?

Love and hugs,

Lene Andersen said...

Brilliant and profound. And boy, it resonates. Email to follow.

FridaWrites said...

You know, I think you are an expert in this area. I'd not have had a clue as to why I was having tachycardia/bp problems last summer if it weren't for your writing. I think a lot of doctors don't understand it.

Time to pull out those ice packs for the 10K. Please take care of yourself out there and hope to see some photos soon. (Frida thinks to herself, why don't I do a 10K? Oh, yes, no manual wheelchair. Umm, I can go really fast in my scooter! The upside of heat is that I can swim again soon, in a month, without paying gym fees.)

Those 30 to 60 minutes outside are crucially important and I wish you had more hours outside, wheeling away whereever you like.

Moving can be a short-term challenge, but you could have a non-Fran place and a kitty. Animals are wonderful friends.

Baba Yaga said...

Thanks for the honesty. It's important to answer the question sometimes, even though it *is impossible.

And I'm too tired to begin to respond. Except wordlessly, which doesn't translate well! Had to admit yesterday that I blot out the last hours of the night. But in the first hours, I'm hoping for rest. Wishing you some of the same, in between steam trains (more glamorous than smelly old diesels, I suppose - !).

Abi said...

You are still a bit EFM, though. You still care, and you still work to show that you care. You are doing the 10k, also.

I am very glad that you are EFM much less often, though. I rejoice that you are taking your limitations seriously (although it hurts me to think what limitations you have); I really want you to keep living.

I feel very conflicted, though. I do not want you to have massive amounts of pain. I do not want you to have to struggle for every little thing that you achieve (and also for the massive things that you achieve). I do not want you to feel alone. I know that part of why I want you to stay alive is very selfish indeed; you are very important to me, and I do not want to let go of you.

I think that the reason people don't like this sort of post is because it makes them feel helpless. They can see how bad things are, and how little difference they can make to any of the actual problems. Rather than say "I can't do anything about this, and this, and this, and this, and I am really sorry", which feels defeatist and seems to go against how social interactions should be conducted. I really appreciate your honesty, though.

Yes, I think that I am avoiding the issue, also. This is how it is, but it is not how I want it to be; I don't want to engage with the painful bits. I prefer to be comfortable. But being comfortable is not a reasonable option. Comfortable is complacent and useless.

So thank you very much for saying how you are. I am thinking of you, and will do my best to make things slightly more enjoyable for you, at least. Stupid, crappy pain, and weakness, and all that. Sorry for my lack of proper engagement with the subject area - I am digesting it, even if my comment is crap.

Sending gentle hugs, and yet another reminder that I am still thinking of you! xxx

cheryl g said...

You are absolutely right. Saying “I cannot do it alone” is one of the hardest statements to say. So is “Please help me”. Those are statements I still struggle to say and often I don’t (as you know). Then I pay the price. Of course, you encourage me to be more willing to ask for and accept help just as I encourage you to do the same.

I also love EFM but she just can’t call the shots anymore. She has had her time and may be needed in the future but for now she needs to step back and let you rest more.

OK, I admit I think EFM will show up for the TC 10K but I will be there to provide medical support and I hope to help you will fly but not fly away.

If Linda finds a place to move to where you can have pets I will be glad to help her make the move happen. I think it would help with your sense of isolation and the aching loneliness.

Thank you for being willing to truly say how you are and thank you for explaining it and illustrating it so well. I really like nurse catgirl.

How am I? Tired and pushing hard to keep ahead at work but the weekend is coming when I will see you and smile and it will be good.

I think Abi is right about why people have a hard time responding to this type of post. I do think it is very important for you to continue posting them so that we can learn and grow and strive to be more open and understanding.

Raccoon said...

Existing versus living. The living have dreams, and try to achieve them. For the existing, the daily routine is more than enough.

It's okay if you dreams change.

Heh. I once gave a talk at a nursing agency. I asked them how many of them likes sex (I did say it was a rhetorical question). Then I asked why I, needing assistance with everything from (as you say) toilet to shower to wheelchair, shouldn't be allowed the same.

Can I tell you that that went over like a lead balloon?

Just because we are acute (some of us) and chronic (some more of us), doesn't mean that we don't need the intimacy, the closeness. The (person of your preferred gender) next to you in bed.

Having staff rearrange your limbs for you... does that make it a menage a trois?

On other notes, I received a postcard today with an amazing postage stamp of a wheelchair racer with people with "Team EFM" shirts on! And a package! I knew it was from you because you're the only person with that kind of tape...

Raccoon said...

Whoops! I forgot to tell you how I am!

I'm having to lie on the other side for a little while because the skin on the one side is looking a bit fragile. But I've been getting up, and going outside, very frequently. I got my haircut earlier this week, and this weekend I'm celebrating 12 years of living instead of existing.

So, I think I'm faring fairly well.

JaneB said...

Thank you for your honesty, for telling the story when you can and how you can. I have some small inkling of how hard it can be to say yes, I need help or no, I can't do this alone, and I admire you for learning to do it. I can only say, I'm listening, I'm here, far in the distance maybe but... still listening, still caring.

yanub said...

An apartment where you could have a kitten? Maybe also where you could stay cool and not have to futz with evil landladies? But most important--kitten!

You've come to terms with the isolation? I don't know if that's a good thing or a bad thing. Maybe it's neither. Maybe it's just what has to be done in order to get to where you need to be in your head, to get you to "make friends with [yourself] and [your] dreams," as you put it. Do you think so?

Does maybe everyone have a story or two of having been forgotten by parents? Maybe, but yours is particularly sad. I suppose it is because it was at a playground.

(Neil--hellish migraine. I hate the abdominal ones. I hope that's it on migraines for you for a long while.)

Elizabeth McClung said...

Yanub: I sort of thought the 'being left' was a bonding story because everyone had one and Linda was like, "Why weren't you taken to the police? How could parents leave a child unattended for a long period of time?" so I guess it DIDN'T happen to her - I think everyone has been lost in the mall or somewhere though right?

If I had the choice I would have a friend a day come by except on one day so I could have a day free but I don't so I blog 4 times a week, I try and I am by myself. Others have done it. I lie or sit sometimes waiting for people to come so I can be moved. It isn't what I planned or imagined but it is as you say, what needs to be done, I think. And more and more. The phrases they use to say my grandmother was ready to go was 'she slept more and more', 'she was tired' and 'she wasn't as animated' - well gee, that's ME! I am NOT ready to go. I am frustrated that I can't find someone to step up and do a blood transfusion, then do a pacemaker, then follow that with IVIG treatment. But no, getting Synthyoid is still a 3-4 week battle. And until I can get oxygen and other things to my brain (and neutriants I eat absorbed) I can't fight for my health, and so far, no Canadian Doctor will!

Raccoon: the daily routine is a means to an end, which is getting back to boxing and things like that, it is NEVER enough.

If a careworker is getting paid, I think of them as a sexual assistive device. A prosthetic. I mean, they shower, they help wipe my genitals, but I am not supposed to be aroused with the person I am LEGALLY married to? Come on! I will abide by that when all the hundreds to thousands of female workers do as well! Until then, lower me down, I need to do some LICKING!

I really hope you liked the postcard and the package, I hope you liked the present - happy LIFE day.

Jane: Thanks Jane, the whole thing is a learn experience under duress, it is like, "you WILL learn to say you need help! No, well there goes THAT function, now will you say it?" - or to make it more positive, no matter in what situation, I am still learning to be more. Which is for me the point of human - still learning.

Cheryl: yes, moans of pain it turns out do not fully count as "Please help me" though I have cheated with them on the past.

Please help me not die this sunday Cheryl? I am going to do something stupid, I would like to be able to look back on it and a long, while, once the healing has taken place!

Someone asked and I thought, well, try to keep it brief and not mention the pain that much - which I did - then I read back today and like, "Oh a lot of pain" but I think a lot of people have a lot of different pain. So it is hard to know, I just wanted to connect, to have experiences people knew, like being left waiting for parents and having to accept limitations.

I'm looking forward to seeing you too. Bring stamps!

Abi: I think EFM will be a 'reoccuring guest' on the 'which body function is being voted off this week on Autonomic idol! where a real contestant looses more and more function, like operation, try to keep them alive!"

yeah, usually I have something like, pictures of me doing something nice or manga and everyone can comment on that and this is sort of about all of us, and how sometime the answer to "How are you?" honestly isn't going to be "Fine, and you?" And yeah, I think I feel worst of all when I hear people in need and I can't go help, I can't even help myself. I have to let that frustration go though.

Children shouldn't be left alone, but it happens, they shouldn't get lost, but it happens, people shouldn't be isolated due to disease and other conditions but it happens. I think we need to learn to comfort them and go on together. People will never know how important it is to take the chance on sending SOMETHING, to someone who is dying. I know as I did it myself, didn't send a letter, or a package just in case they died and the partner had to get it. But that just meant they were alone and they didn't have to be, because I was too scared to face it. Dunno. I'm not giving up, and if you get a postcard once I go, then no, I wouldn't reply right away, but I tried. If you can think of a way to try more, please let me know. I refuse to believe that we cannot comfort at all. I know in our society a person can ghost through dozens of people PAID to comfort and care and instead be emotionally bruised. I have to try. I will keep trying to reverse that.

Baba Yaga: Not sounded good - something send to you, a postcard I think so please check the post box, as it might not be worth the dread in the dark but it is all I have to offer right now. That and the promise of sunflowers to come. Yes, if I have to be run over, do it in style!

Fridawrites: We are experts because we observe 24/7, and we are both trained researchers. GP's see us as females (Ergo, hysterical and probably useless), and while they spend their time, diagnosing what is up billy's nose and the cold we are trying to connect the dots using baseline data if we can on what is and is not connected to our condition. Then we tell them and they ignore it. We bring in journal articles and they ignore it. We guide them so that they discover it themselves and they announce they have found our problem and are genuises and are puzzled why we roll our eyes instead of clapping (because....we are female ergo hysterical!).

DO a 5K, I know many breast cancer and other causes who would be VERY happy to have a scooter in the race. Let's fact it, it is about 'participation' and if you are raising money for awareness of diseases, to only have able bodied people show up is sort of embarressing for the organizers. THEY WANT diversity (the race ones, they don't!). So I recommend if you want to, go out, talk to people, meet some friends and get people used to seeing what 1/7th of population is represented by: You!

Fran leaves me alone, well she did turn down our third request for a kitty, even if we had a doctor's note I don't think we could get one. But yes, getting a kitty would be very, very nice.

Lene: You loved me in the morning, but you hate me now, right? See, I should know when to shut up!

Neil: I am really sorry about your migraine and this is exactly what I mean, I don't know how you go on, but you do. And you can't imagine but I do, and I try to get what I want done and push the envelope as I imagine you do and then pay for it.

All the sources come from Doujinshi which are independant artists who meet twice a year to sell thier work, that was from the group CG+ (for Calendar Girls), and I will see in August, if I am around, if they are selling another color book of works. I can provide the link, however I think they only ship to Japan?

Kathz said...

I'm not sure how to respond because these aren't experiences I have had - apart from the loneliness.

I think it's almost always harder accepting help and care, if you've been helping and caring for others most of your life. But that acceptance of other people's practical love is also an important part of being human.

I hope you continue to have good dreams - and cool and matching jewellery.

Neil said...

Thank you, Beth. Yes, please, I would like the link if you don't mind.

We go on as we have to, I suppose; you with your particular hells, me with mine. :)

In the sex department: it might be less fun for you, but can Linda move to where you need her to be? Then you wouldn't have to move so much. Needless to say, I don't want details, but I sure wish I could help you. Um, somehow...

Love, hugs, and cheers,

wendryn said...

Thank you for answering "How are you?" even if it was hard to write. I often wonder how you are doing, but I know you can only write pieces of it.

I have been lonely, I have been left, I have been forgotten. It is one of those things that many of us experience. It really sucks. I'm sorry you have had to get used to loneliness, but glad that you have managed.

How am I? A little sore from belly dancing, a little tired, but mostly content, which I can't usually say. We had a good class tongiht and a bunch of us had pizza afterwards. We have rehearsal Monday and a performance Tuesday, another perfomrance in a couple of weeks, and I have at least one more piece to learn before the Fire Arts Festival in June. I got to come home with my husband, who makes me smile even on the worst days, a goofy large dog, two very dear cats, and a mama cat and two kittens who are visiting for a while. Our home is our space, filled with books, with art from people we love (including you!), with the smells of good cooking and the evidence of a lot of work put into the house to make it home.

I am seldom content, but sitting here now, writing to you, it is a moment of peace.

I hope you make it through this weekend. We will be rooting for you and worrying about you all at once. I'm sorry you are dealing with so much pain (I hate charlie horses!) and hope that the pain eases.

Take care, m'dear. Even if you are alone there, we will do what we can to keep you from feeling too lonely.

rachelcreative said...

I appreciate your honesty and you talking about the difficult stuff. I cannot imagine your pain but I *can* understand how you live it - because you have no choice *but* to live with it. We have to find a way or throw in the towel. Not much of a choice!

I'm really proud of you taking more quiet time, choosing to stay in, choosing to stay in bed. I know these are things that do not come naturally to you.

Being totally honest with you I think the "not doing things" has taken more strength of character and mind than anything I have ever done in my life. Making those changes forced upon me because the price for doing them was too high for me and too high to put on my husband who has to pick up the pieces after.

Doing this little isn't easy. And I'm not being flippant.

It takes discipline and amazing control to take the quiet route. But the reward, like you know, is being able to choose to have those times to go out and to do things and be able to enjoy that. And to minimise the payback from that so you can do it all over again.

I think I could say a lot more on this. But don't want to give you long long comment again! I just wanted to let you know that I understand that stopping in bed can sometimes be incredibly tough to do but can be worth it. And that EFM can I'm sure be channelled into the discipline needed to succeed with taking the quiet times.

I wish I were able to come hang out with you every now and again to help with the loneliness.

thea said...

I love the idea of you guys being able to have a kitten! I stayed at my friend's place on Friday. She has a tiny kitten and I was Pounced on. I thought of you that evening a lot, how much you would enjoy playing with Miss Kitty.

True, packing isn't fun. I wonder if there are any voluntary groups that have someone who could come over and give you both some help with the moving aspect of things?

thea said...

I'm a bit far away to visit physically, but you are often in my thoughts.

Chinamh said...

My problem: I can not stand or walk for more than 30 minutes w/o having extreme pain in my feet/ankles/legs if I exceed the amount of time it often takes 36-48 hours before the pain subsides. If I am on my feet for long I get burning shooting pains in the the heels and balls of my feet and ankles, I went to a podiatrist and I do wear shoes with orthotic inserts but they don't help.