Friday, January 09, 2009

Why I have no spoons, and what you CAN DO.

This post is simple: I need/have to go from the girl on the left to the girl on the right, and I need your help. Read the post to understand how you can help and why I need the help NOW.

I’ve been sick/disabled too long I realized as I finally ‘understood’ what being able boded is like (wow!). So I am going to try and reverse engineer and explain the difference between MY condition, Chronic Disabilities and being Able Bodied.

See I was staring at this bottle of bath salts for several hours (when you have to move stuff along through the skin, taking a dump takes a bit longer) and the bath salt bottle is 80% full. And I realized, “This is what the energy of an AB is like.” And you know what is amazing? They can use it, spread it here and there, do things literally 10 to 20 faster than I can (like leave the house in 4 minutes compared to my 105 minutes) and EVERY day, it get completely refilled again. Amazing no? And this is the kicker, the MORE active they are, the MORE energy crystals they get. That’s right, empty it completely and it ends up FULLER! Wow. To me only two years later, that is pretty amazing. Able body people have a pretty sweet life.

Now there is spoon theory, in which you accept your illness or disability and that while other people get say 100 spoons, you only get 40. So people have to learn how to stop trying to keep up with the 100 spoon people and live with 40. And if you overexert yourself, and use like 45 spoons, you will pay a penalty and have to be at 30 spoons until you work back up to 40 spoons again. That is for STABLE chronic conditions.

Okay, now you have ME, and I have not just one but MANY degenerative conditions. And this is important because according to the books and most doctors I will die. But unlike cancer which progresses in a particular way, changing cells, taking over the lymph system and overloading a crash in a time which has been seen thousands of time (but there are still exceptions), my progression is so far, random. And so, if I don’t “GET” the difference between ME and the “Spoon Theory”, I will die. I have not rested. Part is because no one has adjusted to me being sick or broken on the level that I am: so from home care, to Linda to others, I am asked to expend energy which I realized would put me in the hospital by the end of the week (not that I wasn’t helping by working until 5:00 am). It is hard to rest when you look the same. I said earlier this week I would end up in the hospital, and today I came within a minute or so of doing so.

Okay, AB’s get 100 lines of energy crystals, and person with condition X gets 40 lines of energy crystals and when they wake up, they have those crystals magically reappear. I get 20-30. The problem is that in Spoon Theory, when people allocate their spoons, whether disabled or able bodied, they don’t have to factor “How many spoon to keep breathing?”, “How many for my heart to beat?”, “How many to convert oxygen?” See, in Spoon Theory, which is useful for certain conditions, it is assumed that BASIC functions will not take energy. So breathing, heart beating, ability to circulate blood, drinking, swallowing, eating, are all not counted. But they DO have to take control of their life, making conscious decisions because those have real consequences. So the question becomes, “If I go to the store today that is 15 spoons and making dinner is 10 spoons so I need to rest two to three hours after each activity.”

With my condition, I don’t just have MSA, or hypothyroidism or anemia or a currently unidentified autoimmune disease but OTHER diseases too. Plus I have, thanks to the destruction of most nerves, no feeling. I used to be ‘in tune’ with my body but now, until the time when my heart stopped beating (as it did today) and I said, “Something feels wrong” before slumping over, I don’t have a clue that golly, I must be overtaxed. And due to the extreme nature of secondary diseases like Raynauds, it is both unclear to caregivers what has caused me to slump over: Have I stopped breathing, has my heart become so erratic that it doesn’t beat blood to my brain, has my vascular system decreased, or have my lungs stopped converting enough oxygen to feed the brain, or am I simply completely exhausted? Actually, right now, typing this paragraph, I slumped over, and it was determined that due to one hand being blue, I needed oxygen and now I am on oxygen. I woke up and continue.

So what conditions need to include counting ‘spoons’ for simply TALKING. I do. And if I use my 30 lines of energy down to eight, well, I might still be able to do stamping on postcards, but my heart starts get weaker and weaker until I have to be hospitalized. And if I talk in the hospital, alarms start to go and they have to stabilize me again (that really narks them, having to do that four times just because you want to tell a really good story!). And after a two hour nap, rest and then eight hours of sleep I might have.....14 lines of energy.

And of course, at any time a seizure (one of the only symptoms where care givers know what it is: hey, she’s having a seizure! While my arms turning purple up to the shoulder or hands turning black, can be up to six different reasons) can come by and steal half of my energy. Or my heart can go out of whack because the autoimmune disease in my brain decides to attack that part, and I lose energy. So there is no “spoon” theory. Right now, there is survival. There used to be a time where exercise used to give me a boost of 10% over the course of the week, now it just takes 20% of my energy for the next four days. Maybe if I can figure out how to get back UP, I will have a fighting chance. Because if I don't then I won't. It is really that close now. It is change and maybe not die (now). And I need help.

Right now, being absolutely still, not answering emails, not doing blogs, just watching DVD’s on my computer is actually the most healthy thing for me at the end of the week while a well rounded schedule of going out and doing exercise once a week, a bit of wheeling and living my life on the computer, actually is knocking me down. Now, I am NOT going to give up all my contacts and my friends, because I believe I can slowly get a bit more strength AND put a limit on my computer and other activities until that occurs. I HAVE to accept that I am now the girl who sits buy while other people do things for me, like it or not. Becasue we can’t tell how strong I am because I look pretty much the same, except now; not I not only am I NOT the same (as last week, last month, or even yesterday in terms of energy and safely staying alive), I am in CRITICAL condition. This you need to know.

Today I went out and fed squirrels and I look, well thin, but like Beth. Great, yeah!?

No, not great, I got 2nd degree frostbite and in trying to warm up my hands, I passed out, stopped breathing and my heart got very, very weak. The problem is, do I have enough energy to leave the hospital once I get in? I was revived and given liquids and oxygen in case it was low oxygen, low lung conversion, anemia, or a few other things. Since then I have slept 3 hours, and eaten twice and passed out twice more, had numerous seizures and I still look ‘normal’, it is just, if I talk for more than three minutes I will pass out. I will become emergent (in fact right now my fingertips are black and I am ON oxygen). And tomorrow…I will be weaker. When I am nauseous it could be anything from lack of liquids, to vascular system out of control, to inability of blood to reach inner ear or even anemia. Care giving me, and being me is a chore.

Ah ha! And this is where you come in. Because I have decided with help from Veralidaine and Wendryn come up with a plan called something like: The Helping Beth change her behavior, outlook and not die plan (THBCHBOANDP for short!). Basically I need a few volunteers who are willing to take on individual aspects of regulating what parts of me CAN be regulated from afar. The two words I am told for caring for people in my type of condition are consistency and stability. So, I need to change within a framework that is consistent and stable. On my end I am TRYING to convince my care workers they aren’t prison guards but CARE workers. I am working with Linda and with the worst offender – ME.

But what I need are a combination of sponsor and older sister/brother. Someone who HAS the number of spoons to keep an eye on me regularly and wants to. Admit it, deep down, you KNOW that if you just had the chance to tell me what to do, my life would be better! Haha, you older sibling you! So you can either volunteer here in comments but only if I have your email, or email me because we will need to email each other. Or you can email me. So for example, I am working trying to keep my life stable, while working to rest more and move toward positive emotions. So, and this is going to be not HARD but a little bit of commitment, sort of like feeding fish, but luckily there was SO much boring medical stuff no one will get this far down to hear me being so selfish as to ask for help for a subhuman like me.

For example, I will need individuals who are willing to send me post/mail at a REGULAR interval (consistent and stable!), whether that is every two week or every month, it can be put on a calendar and I can hopefully learn things like ‘anticipation, excitement, looking ahead.’ Yes, this is an actual need.

Another thing I would like to do is spend 30 minutes at least three times a week writing thank you cards or sorting postcard project postcards and stickers. I would like to do that as I have a backlog in my brain box (how I know things sent to me, put in a box in sequential order), and I need to organize the postcards. BUT, if I do too much I will get exhausted. On the other hand, it gets me away from working on the computer. So I would need a sponsor/older sister who would email back and forth with me and find out what I have done, and have I done my 30 minutes away from the computer yet this week? How many thank you cards have I done? The same is true about reading, I want to try and just READ, or at least read manga if books are too hard for 30 minutes three to four times a week. And so I could use a friend, a sponsor/older sibling for that. But see, this means you have to be consistent and stable too. If I miss a week, if I lose contact, I get lost. I am hoping to build up pride in my work, reinforced by my sponsor.

People asked what they could do, these are some things that need being done. By the way, Linda’s one cent plus shipping romance novels (duets: two books in one) have all been read so I went through with her and added some more; if you want to give the main caregiver a break, that is a need, which is quite inexpensive. I also need between four and six people who are willing to commit to $20-30 every 2-3 months. See, I get postcards and supplies from David at his online business for funding the Japan Cat Project. I make an order of about $25-30 every two weeks, which is between 3-6 shitajiki boards (pencil boards) which I then give on as gifts. So if there are some people who want to commit to this, as long as I live (or get rich or find some amazing job), then I will know that about 25-50% of the postcard aspects of the postcard project costs are taken care of. So that would mean four to six people who say, I can do that, and then we can email and arrange a schedule and either use paypal or Amazon.com gift cards. I’m sorry, I have tried not to ask for money on this blog because that is not what this blog is about. But it is about my health and I don’t have the heath to do the chasing online for anime postcards anymore; this man has volunteered to help me. If I can make that CONSISTENT and STABLE, that will reduce my energy, energy I need for breathing and staying conscious. By the way, the same is true for a sheet of 42 or 94 cent stamps. We are okay on .27 but anything oversized needs a .42 cent stamp, and if someone wants to send a sheet once a month, that is a real need, as are all the people in Australia and New Zealand, South America, Africa, and India, Asia and Japan. So if someone wants to commit to a sheet once a month or once every two months, that is a need that I don’t need to worry about. What I am asking for is a mixture of older sibling, sponsor, caregiver and in somecases guardian, keeping a kind and gentle eye on me. Not to run my life, but to help me, as limitations increase, including my mental ones, to live as well as I can.

If someone wants to work with me to ask me what I watched that day, or how I rested, that is something else I need, but that might also include involvement on your part. Same with things like, am I drinking enough liquids. Look, no one wants 20 nags coming after them every day. But what I do want is to change how I live my life with a group of friends who care about me and are there to hear a few lines to say, ‘yes, I did have my two gatorade before my nap. How are you doing on your project X?” And at the same time they commit to $5 a month to go out and have something NICE to drink like BEER instead of always gatorade. That’s a sponsor. If the money is an issue, I can actually SEND YOU the money. But see, I won’t remember this plan in three days. You will. So if you tell me I have done a good job and you are sending me $5 for going out for a beer because I drank all my liquids that week; that will be something to look forward to (and I won’t know it is my money by that time!). IF the money is the problem.

The problem is I need a fast life change which has to be intensely monitored but as stable as possible. So I can rest but also start trying to change and have joy. I can’t change one life aspect without the others. I found that today. I went to see squirrels and I passed out many, many times, and was in bed. So going to see kitties is a plan, but it isn’t enough. I need more, a complete life change so that I can go see kitties in a week because I have had friends watching over me, to help me rest enough, relax enough, feel human enough, learn to have excitement and joy to go and see kitties. The health, the emotion and the rest all go together.

I want to live. I am asking you in a concrete way to help me do that. And if you have additional ideas of how to improve this idea in various areas, I’d like to hear it! As for me, as soon as I am done this, I am doing postcard matching! Don’t worry, I sit still and as three of us we go over the names and find the best postcard we have, put the label on and get it ready for stamping. Because this is a cold and hard winter. And people need to know they are cared about.

39 comments:

yanub said...

Oh, dear. Consistency. I don't know if I can pull that one off. Seriously. I'm consistently insomniac. Is that any help? No, probably not. I'll email you about this after I've thought on it a while. The worst thing would be for me to make a commitment that I can't actually keep.

Anna said...

I see the spoon parallell.
I can totally be a "nagging" one about healt, food, rest and so on. I love sending e-mails and so on.
if you want to mail:
aronsson12@gmail.com

Abi said...

I am e-mailing you about this, with my thoughts.

However, there is one thought I wanted to put up here. How about a buddy system? People could organise themselves into groups of 2 or 3 and if they knew that they would be unable to keep a commitment they had made to you (evening out, or something) they would let you know, and let the buddies (oh, I hate that word!) know so that they could take over that responsibility for the evening. Or something.

That would mean that you would have the commitment kept, with somebody you know, and that people didn't have to feel bad if something came up. It would not make it much less of a commitment, though. It would perhaps increase the sense of community.

And I have many thoughts on the spoon theory and how it could be extended (albeit made less simple and therefore a much less useful analogy) to fit you better. Perhaps I shall annoy you with that in a later comment, when I have more time...

desdemona said...

I'm with yanub. Total consistency problem here...
I like nagging though, so that might get me motivated.

Question though: I use google calendar and you can set up reminders there either as pop ups or via email. I don't know how helpful that would be for you. I know for me for certain things it works great (picking up my son from school, because my watch broke I need something that goes "bing" since I loose track of time quickly), for others (laundry), not so much...

Let me think about it for a bit and maybe we can come up with a plan. School starts up again tomorrow and maybe that'll help with my current consistency issues ;-)

Take care!
Desdemona

JaneB said...

I also worry about being able to be consistent ENOUGH, what with the job and all my own distractions... I'd hate to let you down. But as I do have a job, I have more financial resources - I hearby commit to a regular donation to the postcard project, perhaps monthly? And if anyone does need help with money for your 'rewards', ask me, don't use your own - I can manage a few dollars for the "keeping EFM in line" fund as well as postcards and kitties! Do email me, or get Linda to if you are asking her to deal with the monies.

And Beth? I'm so impressed that you've been able not just to come to this understanding but to explain it in a way that makes so much sense, and then to do what I know is really really hard - work out what YOU NEED and ask for it. You are an amazing person, teaching by example so powerfully.

I can really relate to your 'erratic spoons' theory, if I can call it that - that's the problem I find with working - my job is many good things, but predictable it is not. So that I plan at times when my energy is low to do tasks a, b and c at work, then come home (which leave enough energy over for a little me time and some exercise and some hobby doing), but d,e, and f happen, and a student comes to me in a state and goes off happy, and I'm a sponge for other people's anxiety and needs, so I worry about the student and suddenly find I barely have the spoons to get home and crawl under the duvet, never mind anything else... So your condition makes your 'spoons' erratic, for me it's my job - yeah, maybe I should do something dull and predictable that would let me look after myself better, but for now I'm carrying on, and trying to find ways to stash a few energy crystals away for emergencies - a luxury I know you don't have. Wish I could give you some of mine! (Or even better a few from the very fit, sporty undergrad student who has trouble sitting still in classes - if I could tap her fidgeting energy and pass it on to you, that would make my class calmer AND help with the postcards!).

Dawn Allenbach said...

I can be a consistent emailer. With my schedule and my low funds, I don't want to commit to a postcard/letter every week and then not do it. I can, however, consistently email you to check that you're reading or what DVD did you watch. I can do that even if I'm teaching a lab this semester, which I may be.

Lene Andersen said...

I'd like to sign up - what, are you kidding me? Bossing you around and you're asking me to do so? It's a dream come true - But will have to have a bit of a think about what I can do. My own spoons are pretty unreliable and I don't want to commit to something until I'm sure about what I'll be able to do. Will e-mail you later.

And congratulations for asking for help! Personal growth, no? ;)

rachelcreative said...

A good explanation Elizabeth and a really clear plan. Sounds great.

I am going to sleep on this and read again before I give an answer. My instinct with fluctuating stability and dropping spoons all over the place is I'm not able to give the consistency needed. But I will think it over properly and see if I can find a way to commit that would be helpful to us both.

I do not want to break a commitment to you so I'm not going to promise lightly.

There aren't many people who can be so clear and direct about the help they need when under so much assault from their own body. I want to help you and I hope you don't hear this as a big fat no because it's not.

marie said...

Elizabeth, I am the definition of consistency. I would love to email you or send you cards -- and you could count on me to do it on a regular scheudle. I love the post card you sent me and I would love the opportunity to return that type of kindness. Please email me at my gmail account: marie.davis498@gmail.com

Tammy said...

Beth, I'm so glad you have drawn out exactly what people can do to help! I know it's very difficult to ask for help and I'm happy you did. I need to do a little thinking on exactly what I can commit to, I do take my commitments to heart. I will email you soon.
Hugs

cheryl g said...

I want to start by saying that once again you have used the perfect pictures to illustrate what you are saying. The big sister picture is great – I just know she is bossing everyone around. I really like the girl reading and the guardian picture, and the last picture looking out at the snow is very evocative.

I am getting the not serious business down first so please keep reading. (Yes, you can roll your eyes at me.) Feeding squirrels was fun. It was like a shark feeding frenzy. I can now say a squirrel has mugged me. (I think it was a member of Psycho’s posse.)

Thank you for explaining how the energy thing works for you. I knew spoon theory didn’t really apply but I didn’t have a clear understanding of what it is really like for you. The lines of energy crystals really make sense. I think another component of the energy crystal theory for you is the idea that with no warning and no apparent cause you can have lines just disappear. I think that is one of the thing that makes it so hard.

I quickly learned with you that any time you fade or “go funny” I have to start with an emergency assessment, just as I would do if a stranger collapsed in front of me and I had no idea why. With the complexity of your illness it is not possible to assume that passing out is always due to X. I have a streamlined mental checklist I run through but I always run through it. I think that is why you get more proactive care from ER doctors than from the GP. ER doctors are used to making rapid assessments and not working from assumptions. GP’s are used to everything fitting in set frameworks.

Yes, you do need to accept that you are the girl who sits by while others do things for you. I also believe that Linda and I need to accept that. When you give the outward appearance of being strong I need to remember that it isn’t true and I have to step in and do the task. I need to not let the apparent stability of your outward appearance lull me into denial of how you truly are. We all need to remember that you have a degenerating condition, not a stable one. We can’t let the perception of you being the same based on your outward appearance keep us from helping you sit by while we do the task.

I like your guardian plan and I truly think it will work to help you change. I truly hope some members of our little blog community can help. You already have my pledge of support. I am making my “big sister” list and putting things on my calendar once I am home.

Thank you for having the strength and courage to reach out and ask for help. I believe doing that was very hard and painful for you. You are not human and you do deserve the support you ask for. Thank you for asking.

thea said...

I really like this plan, well done for initiating it and going public about it.

Does sound like you've hit the point of needing a different routine, different committments etc. Love for you to be aiming for the kitties :)

I'm pleased you got to go see the squirrels, BUT... (you get the picture? !!) Black is a great colour for clothing. Not for fingers and arms.

thea said...

Cheryl, I really liked your way of explaining this unpredictability further in terms of your EMT assessments. That helps make sense of things too.

Hey I like the idea of better care from ER doctors. Maybe a new GP who's just come from ER work? They think they are changing jobs to quieten down the workload a bit... but then out jumps EFM from the bushes :P

Elizabeth McClung said...

Abi: I think your buddy system is brilliant. I did not realize how the word "commitment" doesn't just scare MEN off it scares everyone. And for me, it defines me, so I forgot that it isn't that way for everyone. I suggested a sort of loose version for David and getting postcards and Shitajiki so each person would only end up having to average about $4-$5 (or 2-3 pounds) a month. And they could switch rotations. I think that if people WANT to help and are concerned about the 'commitment' aspect becuase of health or other concerns then yes, why not buddy people up? That makes perfect sense.

Most of the things are not high maintaining, there is the more frequent but no cost (2-3 emails a week) to middle ground (cost of stamps to send a letter once a month or every two weeks) to, I think the most expensive is $5 a month, which is David and shitajiki boards or doing the sheets of stamps, which would also do well in rotation - $12 to $24 every 2-3 months seems like a doable thing - and if there is a bad month for one person, then if there are two other people, they can talk and someone else can take over - like a real family, swapping chores.

And that is what this is honestly (a chore). I have nothing really to offer in return; I will grow weaker, and less capable (if I live past these next seven days and another few weeks). So for the long term (which for me is like what - six months?), having a buddy system is brilliant. I just need to figure out how to do a sort of anonymous sign up and make it so you can choose 1/3 or the whole thing and then everyone finds out who they are paired with and they don't HAVE to worry so much about commitment because there are people there to help THEM if they need it.

Brilliant idea.

Yanub: It seems "consistency" or 'commentment' seems to be the word that worries everyone, I like Abi's idea (above). Actually I do like it when you comment at 3:00 am your time. The thing to remember is that if I do live for more than the rest of this week, and the next week and a month or two, is that my emotional understanding will likely be that of a child. And I will have no memory of this; which is why I am trying to get it set up now. Because if people keep trying to want me to be as I was some months ago or even as I am now, I WILL try to please them ("Everyone else comes first"), which means that they are actually killing me. That is the blunt truth, with enough people refusing to see the Elizabeth of NOW (whenever that is), I WILL be put into arrest, and hospital and I suppose the ground.

Anna: I do need a collaboration, but I will email and see what type of thing we can set up that works for both of us. Remember, having 20 people telling me I am a bad person isn't going to help, but having each person helping me try to change a different area while working themselves to support me in that I think will. Thanks, and I will email when I have energy.

desdemona: I think Abi's idea, if I can figure out how to impliment it will solve that problem, so if you WANT to help, but are worried about total consistancy, you don't have to BE totally consistant, just part of a team which is willing and wanting to help?

I have a life line phone which has reminders that I have to push and tells me messages from Linda regarding health.

Jane: First, I sympathize with you and the student with all the energy, I had enough problem with gum chewing. AGGGGGHHHHHH!

Yes, asking for help is difficult and I'm learning incredibly painful. I don't WANT to have to ask for help, I want to be there FOR people, and I still think in a limited way I can - but I need to recognize that without severe LIMITED, I can't.

Abi's buddy or group system I think would work well for wanting to help but being unable to in a consistant way and for you maybe a group for a monthly commitment would be best (which means you only have to do a 'chore' once every three months, twice in six months - that sounds doable right?).

I also think the fact that we both WANT to be the best and have these expectations of ourselves that we try to keep to doesn't always help us as that might be why you attract the people who know you are 'always there to listen' when in reality they are energy vampires!

I wish there was a solution I could give you that still left you a caring person as I found those who spent the least energy were those who didn't give a damn, and that seemed like, "Why did you do this job in the first place?" to me. Okay, very side tracked. Thanks. As for the organization, I will talk with Cheryl and Linda and it will probably be Cheryl who does that as she seems best equipped (since this is her job for the entire park service where she is) to organize that, and can arrange things like direct deposit and such with reminders for me - so financially, I will ask her to send you an email if that is okay? She is very good at this while I, day to day, vary immensely.

Dawn: I will try to email you in the next 48 hours and we can go over which aspect you would like and what you see that entailing and what I see that entailing and work out something?

Lene: Never too late for personal growth, I guess, I am not sure if 'learning to be selfish' counts as personal growth.

Well, there are the buddy systems and then there is the commitments which are monthly, and I think with Cheryl, you can probably get that done with direct deposit or something automatic - of course, any still pestering me to convince me I am a person that is actually worth talking to is not restricted and doesn't have to stop, or emails. So maybe a buddy or a commitment for something that can be automated, then you don't have to worry about your own spoons and use them to harass....I mean care for me, as you have energy and time.

Rachel: I would be interested to hear what you have to say after thinking. I do find Abi's idea of a buddy system for those who have fluxuations in energy and other issues to be a good one.

Essentially there are the high commitments (every few days) which I think would need to be from AB people) then the mid commitments (letters every two weeks, postage once a month), and long commitments (rotating the costs of shitajiki's to eliminate searching for postcards and reducing my time and energy spent on that - once every two months or so if we find 4 people to sign up!). With Cheryl's help I think the financial ones can be automated or made as easy as possible for the person volunteering. The other side, the emotional, to try and move me from 'Type A, overtaxed, in a critical health state (see Cheryl's health assessment comment at the end), and still wanting to PLEASE everyone but having no emotions that are good (feeling I am 'sub-human', I am 'bad', despair, frustration, hopelessness, fear - those I still have!) to a more balanced Elizabeth who can plan, if that is still mentally possible in the future, and anticipate, have fun, have glee, be strong enough to see the kittens somewhere nearby is the goal.

Tammy: thank you - I appreciate your understanding how difficult this was, and I did think about it for many, many hours and a couple days. I think with Cheryl's help and Abi's idea (and Wendryn's and other's that might come in) we can minimize some of the aspects, and thus reduce worries over personally overextending becuase hey, you have some pretty strong fluxuations too - and I want to be helping YOU. I will await your email.

Cheryl: Thanks, I did hope the pictures, particularly the first one helped people understand what I am trying to do in very clear ideas.

One of the problems with 'spoon theory' is the idea that there is any sort of consistancy. Which there isn't. I have no idea why and sometimes after post analysis which we do (Linda and I and you and I) sometimes we can't understand, "Why DID all the systems fail, we had done everything right!"

Also I finally understood that I simply cannot be the same person on Wednesday that I was on Tuesday becuase on Wednesday I have 40% of the energy, and unlike other conditions, I CAN use up the energy to make my heart beat or to breath until even that is gone. And so on Thursday I have 50% of what I had on Wednesday, which is now only 20% energy of what the SAME care worker who saw me Tuesday, yet they see, or don't want to see any difference and want me to act the same, to entertain them the same, to talk the same to wheel around and show them things the same. Except that uses up, maybe MORE than I have, and I end up in hospital. Next step, learn to use the word, "No."

Haha - see even you admit I am NOT human - though I feel you will say that was a typo. It was hard and it is still hard. Because, this is like the trust exercise where you fall backwards only here I am telling everyone "Hey, I am falling already, I am FALLING" and it feels like some are like, "Well, I dunno, I mean the whole catching thing, is it really me?" Which means I exposed myself and yes, begged, asked for help, because I CANNOT help myself, and perhaps that energy was spent in vain.

Thea: Thanks for supporting me in putting this up. See, I did see the squirrels but it turns out that this year, the cost to me is very different than last year, and yes, black not so good for fingers.

Thanks.

Sarah-Beth said...

I would love to write letters or postcards and help in any way I can. I love to write letters and send mail.

I signed up for a postcard but I have been living at home during a college break and so have not been able to check my mail. But I follow your blog every day and think of you often.

Please let me know what I can do!

Sarah-Beth
memorysdaughter@gmail.com

SharonMV said...

Dear Beth,

I'd love to help, but don't know if I can do anything on a regular basis. I understand about the spoon theory. I don't think people with chronic illnesses expect to start each day with the same amount of spoons, but it seems they are supposed to be able to estimate how many spoons they have for that day. This doesn't work for me either. And I often feel that I have a negative number of spoons, like let's say -7 - what do I do then? I may wake up in the morning feeling abosolutely awful but may feel better after meds & several hours of rest. And then I have to take care of myself - eating, taking pills, washing, etc. At anytime I can come down with a new infection or have the current infection could get worse, my lupus or other autoimmune diseases could go into a bad flare. And I'm still dealing with adrenal deficiency which really saps energy.

But for me, all these things just mean sickness & pain & not being able to do things I should do or want to do. For your the consequences could be more dire. It's really good that you've come to understand & accept that you're not the same from day today. And that you've not only come to this understanding, but have come up with a plan to help yourself and to allow your friends here to help you. Also, now that you are changing your life & routine to deal with daily changing health & energy status, Linda, Cheryl, your care workers (one can hope) will understand your needs and be better able to take care of you. As will all your friends here. As usual, you lead, others follow.

Maybe there is a way for me to participate with a buddy or two. I will think on it. But it's hard for me to be able to promise things, or to know ahead of time (even an hour or two) if I'll be able to my job. Maybe something that needs to be done, but doesn't have a specific deadline - I'm very bad with deadlines. Until then, I'll continue in my irregular way to give what I can, when I can.

Sharon

JaneB said...

Yes, of course Cheryl can email you - whichever way is easiest for you. And don't worry, I'll still be commenting and nagging here whenever I can!

Energy vampires - a very good way of putting it!

Neil said...

I'm sorry, but I'm on the inconsistent list myself; I read your blog nearly every day, but can't guarantee I'll be able to email you at any given time.

Abi's idea of working in teams might be okay; maybe a closed Facebook page (if there is such a thing) for each team to help keep track of each other, so they can keep track of you?

Does that sound overly complicated to you too??

I would send stamps and gift certificates, but we just can't afford to - at least, not often and not much. I have sent what I could. Under-employment sucks.

Love and hugs,
Neil

Elizabeth McClung said...

Sarah-Beth: If you signed up for a postcard, then I postcard you have been sent! If you have not recieved it please let me know and I will send another and another until one gets through.

Thank you for your offer, I will email you when I have a bit more energy.

SharonMV: Thanks for your intent but I think you and struggle along together, trying to be there but for example due to a catastrophic incident today, the number of postcards to go out will be 1/3rd what I planned, and worked toward. The rest will be for next week.

The thing I finally understood is that I could, and can, use up the energy I need to breath or have my heart beat, buy doing something like writing, and suddenly I am in a crash cart situation. It is frustrating and scary. Thank you for your understanding. I know just being able to comment regularly is something you probably push yourself to do.

Jane: Great, I'll have her contact you, thank you so much for caring for someone (I was about to write something - but that is the voices inside) like me.

Neil: As I said, if money was an issue, I would send the money to you. However, if you are not able to be consistant or part of a team, that is entirely a valid option, and thanks for your honestly.

Elizabeth McClung said...

I woke up this morning is such pain but with additional painkillers stayed in bed and spent today the full 12 hours in bed and asleep, neverless, I felt and told Linda when I was helped into the wheelchair that 'today was the last day.' Well, I made it to Sunday 2:00 am. But I had a prolonged emergency where without Cheryl and Linda together with a lot of medical equipment I would have died, at least for a while, perhaps permanently. I did everything right, I was still, I drank liquids and yet, I stopped breathing so long, that my extremities filled with fluids, my cells were literally stripped of thier oxygen to try and keep me going.

I don't know what to do. I AM trying to not die. Why does it feel like I am punished. This week I will send the regular amount of postcards but not the 84 or so that were in preperation, not a single person who requested a card new this week will not be sent one. If I am alive, I will fulfill what I have set out to do. That is how I live, and I don't expect more than that. In fact, I would expect less, like a flu to be a good reason not to do something.

rachelcreative said...

Buddy system - something like ning.com might be useful for setting up some kind of buddy system & co-ordinating sponsorship.

There may be other solutions but I know ning is free, fairly simple to set up and you can have forums, message board (even chat) and keep it a closed/private community.

Anna said...

RESTING and SLEEPING is good.
It is a good path to choose.

Sorry, sorry, sorry for your pain. and for you dying. It is shit. To do everything right and still not get full and lots of spoons, wish I could be a bit more fluent here but all I can say is fuck. Won't offer any positive remarks because I can't find any. Pain and dying sucks.

It is soooo different i imagine to have a constant/slow disease disability, than a fast and unpredictable one.

It just hit me the other day that well, A LOT of people are disabled. How come hearingaid equals disability and not glasses? (Or maybe it is just me thinking about that)

I was at a new optrician the other day, who said "wow you have really severe sightproblem" (or what it is called in english)"You have three problems that need to be considered."

Well, yeah, crash my glasses and I can't see smiles or letters beyond 10 cm.from my eyes.......but my sight can be corrected up to 90% or something I would guess, and it has taken like 26 years to deteriorate this far.....so, disabled wearing glasses, no, without, yes.

Dawn Allenbach said...

Just to warn you.

I think you said once you have a calendar on which you write things (appointments and such?). Write this on your calendar -- on Tuesday, January 13 and Wednesday, January 14, I probably won't be emailing anyone. I'll be preparing (on the 13th) and defending (on the 14th) my General Exam, and naturally MY brain will be fixated on that. I still love you, though.

Neil said...

I'm glad you're still here, Beth. I'm sending positive energy your way. I'm very reluctant to let you send me money to send back; I just wouldn't feel right looking after your money when I can't manage my own very well. :(

As for the buddies, I've realized that Blogspot would be my choice. I'm already a member of a closed blogspot group at work, and I'm not a Facebook fan.

I just took a look at ning.com; am I right in thinking it's similar to blogspot?

I keep thinking of you and spoons, and a cat stealing spoons before you can use them.

Love and hugs and positive energy,
Neil

thea said...

I like the idea of a buddy system. I can very willingly be part of this. Like a lot of the others, I am concerned about my ability to do something *very* regularly with my own limits. But with others? Yes! Email me, or you are welcome to pass on my email to Cheryl if she might set something up or co-ordinate something.

JaneB said...

Sorry to hear you've had another 'I did it all right and... aargh' type of day, for you and for Cheryl and Linda too. It's frightening to read about, I can't begin to imagine how frightening it must be to live through. To have to make daily decisions without a good basis for those decisions, and knowing that the consequences can be literally fatal.

You're all in my prayers, and I pray for a calmer few days for you all...

SharonMV said...

Dear Beth,
I'm sorry that you're in such pain and had a bad crash. It must be so hard for you & frightening. I'd be scared if I had to endure a seizure, let alone what you go through. And it's awful that you rest and do everything you can to take care of yourself and yet still have to deal with the deadly caprice of this illness. I hope you get to see the doctors in Seattle and that they will be able to help you in this fight.

I know the frustration of getting sicker when you're doing everything right - I can catch a virus without even leaving the house, from Dennis, from helping to put away groceries & forgetting to wash my hands. And bacterial infections can spring up from bacteria that's already in my body. It's awful, and I hate it when I can feel myself getting sick and when I crash. But it's usually not scary and I know it's not going to kill me (unless I get a resistant pneumonia or something). It must be so scary for you & Linda & cheryl too, so hard on you.

Sharon

Raccoon said...

Crikey! I missed a couple of days and Fenris slips his chain!

Put me down to help on the financial side of things. Probably best if it goes to Linda, right? What is the turnaround time for PayPal?

Otherwise, I start off being very consistent, then start slacking off. Not what you need.

The buddy system might work with me.

Thank you for explaining about spoons. I'd seen it mentioned a couple of times, but never explained.

Elizabeth McClung said...

Raccoon: yes, I think Linda does the financial stuff, so you can email her and I think Cheryl is trying to get a spread sheet or something so people can buddy up, if they want. The problem right now is getting past like, tomorrow without being hospitalized (because with 1 volunteer and 2 caregivers, I don't think they are going to ambi-bag me but call the hospital and at least for me, the hospital is not a place I get rest). So once I get past a couple days and only pass out like 10 times a day, then we can deal with long term - you know, 3-6 months. haha.

Veralidaine said...

Beth--

I keep trying to leave comments and keep getting Google 502 error. I am trying a last time, but instead of writing a long comment I am just letting you know I saw this and I will email you soon, hopefully tonight. Internet connection is in and out, so if it dies, I'll email tomorrow.

Abi said...

Elizabeth, that does not sound good. I hope that you managed to avoid hospital by doing the breathing thing really well, and having a reliably beating heart. Sending healing thoughts your way.

Everybody else: I have had thoughts on the buddy system, and have written a post about this on my blog. If you have any interest in helping Elizabeth by sending e-mails, even if you don't think that this is a commitment you would be able to keep, have a look here: http://optistatic.blogspot.com/2009/01/supporting-elizabeth.html

Tim said...

Wow, I go away for a couple of days and you almost go away. :(

I'll pitch in here too, you've got my financial support, either paypal or Amazon gift cards. I'm not good at shipping things, but I'll give you the means.

Is $25/ month enough? Just tell me how you want it broken up.

SharonMV said...

Dear Beth,

Been thinking of you & hoping that you're doing OK. Hope you are getting some rest & not experiencing any emergency situations. Sending my love,

Sharon

Neil said...

Beth: You must be psychic! I received another postcard from you today, and ou've put a paw print on it for us. Since there's a stray cat trying to adopt us at the moment, I'll take that as a good sign.

I also adore the celtic sticker: where DID you find it??? I know it sure wasn't in Regina. We're much too stuffy fr that sort of thing!

As for he bovine on a bicycle on the front of the card, I found it very insp- er, mooo-ving. I would not be cowed by such a sight on the highway, since they have to get to market somehow!

The stamp of the Roman coliseum is your doing, isn't it? I've just realized that couldn't be part of the original card. Wow! You DO have good taste in stamps!

Thank you Thank you thank you, Beth. You're truly the most caring friend I have.

And now it's off to bed for me, to try to get rid of a migraine so I can get up in 6 hours for work. :(

Love and hugs,
Neil

cheryl g said...

Wow, we are getting great response for what I have come to think of as “Project Beth”. That is fantastic! I do want to address some concerns though.

I feel it is very important that we not overwhelm Beth. She is very weak at the moment and was unable to get out of bed yesterday. Beth asked me to work on coordinating this effort so she can conserve her energy for now.

Abi has had a brilliant idea and found a calendar where we can coordinate the tasks and make sure they are covered. That lets you all have a back up system in place in case you are ill or unable to email on time. For information on Abi’s plan and the system in question go to

http://optistatic.blogspot.com/2009/01/supporting-elizabeth.html

The tasks we need covered are to send emails a few times a week asking…

- Have you spent time away from the computer? What did you do?
- Have you been taking time to read? What have you read?
- How are you doing on postcard and sticker sorting?
- How is the project to sort the brain box and do thank you notes coming?
- Have you been drinking your Gatorade?
- Have you taken any time just for you?
- Have you been resting?

These days Beth is easily overwhelmed by outside stimuli, especially when she is having a day with poor cognitive levels. To avoid that I have some recommendations.

Only email about a specific task and at most once a day. Only ask about one thing such as reading or drinking gatorade. Getting multiple questions on multiple topics is very difficult for Beth. Keep the email short and light. If you want to have a deeper conversation email her separately. You may not always get a reply as that depends on how Beth is doing.

For those that are planning to send regular mail I recommend emailing Beth once it is posted so she can begin building anticipation.

For those of you offering financial assistance please email me at rangergrrlkio at juno dot com I will be mailing those of you that Beth told me about.

Thank you again for your efforts and understanding.

Cheryl

Anonymous said...

For those that are planning to send regular mail I recommend emailing Beth once it is posted so she can begin building anticipation.

Wouldn't e-mailing once it's posted mean that irregular is useful too?

Elizabeth McClung said...

I agree, irregular posting would be useful. The problem right now is that I do not understand temporal lobe things like continuity, time, and this has only degenerated. Right now for me a "week" is as long as I can remember, which is about 36-50 hours. So I work on things and then that 'week' is over. So when I have worked, several 'weeks' and my allowence I am told is a week away, that confuses me.

It is hoped that if mailing dates are put on the Calendar by Linda that she can tell me, within my memory period who the person is, and that something is coming from them. We hope this will create a pattern memory and thus over time, create a sort of layered memory of not remembering the contents of the letter but that I 'get letters from X' - and thus I have a form of understand time beyond just the immediate.

I don't know if that explaination is helpful or not. Also, because I tend to have such short time and I feel the pressure of disappointing people or that I am running out of time, I have worked all week, then I forget and just work again all 'week' (2.5 days) and have done this SO long, that I don't know how to do ANYTHING except work as hard as possible, which is damaging my health. So if I can learn to anticipate things or stop to open post (which I often don't do, becuase I don't understand what it is, or after a few hours, when it arrived or what it has to do with me), then we can try to build up emotions which have been repressed. Sort of like PTSD, only I have tried to deal with my memory loss and dying by doing what I know how to do (work harder) more and more until that is all I understand and right now I am assessed as severely burnt out. Because I haven't smiled in as long as Linda can remember. So we hope anticipation and excitement will lead to things like joy and happiness.

It is all very good saying, "I want to spend this next X time with Linda focusing on making good memories and our quality of life" but if I am so weak becuase I have worked myself into that state, I don't know if I can recover and I feel anxious if I am not constantly working because I feel I am letting someone/everyone down - well, then I CAN'T have a good memory or quality of life.

Anonymous said...

Receptive language very wobbly today, so sorry not a direct/ full response to your response to me. One bit I understood, though. Would creating a display area for recent mail (the flat sort,anyway) help create the ongoing sense of "I get mail from people"?

A. J. Luxton said...

I will mail you something cute, funny or poignant at least once a week, and if I flub my ability to get out of the house and buy mailables during the narrow time that I'm awake and so is the rest of the world, I will email you something cute, funny or poignant instead. I don't know when the things I mail will *arrive*, though, since I'm not sure how long things take to get from WA to BC. (I'm pretty sure they take about a day to get from OR to WA.) I will try to send them on Friday or Saturday.