I have been reading a book I deem to be of some slight value and of some incredible bias called, Chronic Illness and the Family: a guide for Everyday Living. Which has a section called: 'The Well Spouse', and a Section called, 'The Family and the world' on dealing with all the agencies and other people who don’t get it. Do you notice a missing spouse (this is sort of like, “Where’s Waldo”)? I do, that’s right, there is no section called “The Chronically Ill Spouse” because this book assumes that person is pretty much dead, or going to be so they are here to help the partner to learn how to live, and enjoy life WITHOUT the spouse, while the spouse is dying (Super hints like "Get a change of scenery. You don't need to sit in an ugly room filled with oxygen tanks.." - yeah, no AB bias here, and no attempt or understand for the spouse who is hooked up to those tanks and might like a change of scenery too!). The sections on how to plan vacations and enjoy them and return to your life of going to movies, theatre and restaurants while your spouse stays home seems pretty shitty (along with sort of a how-to guide on verbally and emotionally abusing your spouse - including leaving them repeatedly, and how that's okay). I am not saying that Linda shouldn’t have a night out, I am saying, if it is a bond of true love, the ‘sickness or health’, leaving your spouse to wait in their own shit moaning because the caregiver forgot a pain dosage while you taking in the sun of Spain seems a bit, odd to freaking callous. But then I have noticed when I got ill that the books were always written by the survivors of chronically ill people who talked about how great it was when their spouse got stuck in a lift for three hours so they could read a book in peace. Or how they took a lover because their spouse wasn’t going to be able to fulfill that need. Nice. And also Ablist, because it makes no attempt to view the life of the Chronically Ill Person who might desperate lie dreaming of a vacation or even an evening out at a restaurant. Except that there IS no rest from Chronic Pain or Chronic, Degenerative and Terminal Conditions. No vacation. No extra lovers. No nights out on the town leaving you at home.
So first off, thank you again to all the readers who have stuck with me because yes, I burned out, I went insane, I couldn’t take it anymore,. I was the Beast of the Apocalypse and planning how to burn down several government buildings, and how to take a 9 mm. to my head (trust me, I wouldn't miss, I was trained by better than the national guard, I was trained by survivalist Christians!). But you know what, though I went a wee bonkers from the pain and the stress and the unrelenting seizures......the illness and the pain just goes on. And I narrated it. And you were here. And I have been leaning on you and only just realized how much. Thank you.
So here is, from the last 24 hours, my guide and plans on how to live, and fight for an adjusted life as a chronically ill person. And tips for CareGivers:
1) Being ill IS a job, so is being as healthy as you can: your caregiver has two jobs but so do you. So no, you don't go to the office, you don't get lunch or coffee breaks or gossip, and you have long and shitty hours, but yeah, you have two jobs too! Or three.
Okay, there is a lot of emphasis based on caregiver burnout, but not a lot placed on Chronically Ill burnout because, look at you, you’re not doing anything, right? Wrong. Being ill is a full time job that you can’t quit with unbelievable overtime. Linda has had naps on Sunday, Linda has slept in, I haven't had a nap in two years. I haven't been able to sleep in. It is shitty and horrid and unfair. I don't get a 'return' on my exercise, and yet I do it anyway. This is life.
Then there is trying to remember and stay on top of all the things needed to keep yourself at optimal health; a full time job too (and if you have only minimal memory like me, it means you have lists posted all over).
Now other people, even caregivers forget you have two jobs and they get resentful. You will notice that after a few months the sympathy goes away and you seen as a burden or an annoyance. Doesn't mean you get to stop your two jobs, but you get less support. And you NEED support. For me, I don’t know how to stop that. As you if you read regularly, my family are the people who help and support me in need; and that is not my biological family. Cheryl is my sister, Veralidaine is my Cousin, Kathz and Yanub are my Aunts, Wendryn is my sister, Nancy is my cousin, Lene is my friend and family, I could go on but these happen to be the names of the people whose letters surround me at my desk right now. They are those among others who write to me, who send me food and make sure I eat, who come over to help me so Linda can do her tour for work, or have time off. Without their love, without the support I get from them, I don't know how I could go on. This online family embraces me, holds me, sustains me. I wish I could repay them as much as they have done for me, I wish I could repay them ten-fold, but I can’t. What I can do is try to remember and acknowledge the people whose support, literallym keeps me able to get up and continue. And for whom when I can, I write, or send emails, or support to them. I have 260 names on my postcard project; I have 90 subscribers to my blog, I have 20 or so who comment. Some people support in different ways, some don't comment. I try to remember them all (or have them printed down!)
So aside from family and how being ill is a job, here is my advice: 2) determine something to do once a week or so that is beyond your jobs. Yeah that's right, make life HARDER for yourself. Why? Because I will not, and I don’t like seeing anyone defined by their illness. Today I sorted and put away clothes from the last months' worth of luandry that was stacked in three rooms. Maybe it took me 20 times the effort it would take an AB person. So what. I DID it. It was my VICTORY! Not because I had to, I could have kept with my regular jobs (ill and staying as healthy as possible), but I did it because I wanted Linda to come home and know her sock and underwear drawer was full. I wanted to know that as much as I am consumed in the illness, and it regulates how I sleep, how I eat, how I shit, how I breathe, how I can shower, every detail. I am NOT my illness. Yes, it is stickering, or doing postcards, it can be fun. Today it was sorting laundry, No, not a night out on the town, but something.
3) Welcome to the 21st Century
I know that your life has changed, and being a girlfriend, or a spouse or a friend. I know that with chronic illness throwing on a top and heading out to the pub is a two hour prep with a 50% chance you will have to come back early. It sucks. It really does. However, while the AB world will not slow down for you, there is no reason NOT to use the advantages of it. While you may not be able to dress up and eat out, there is a thing called “take out” – they even deliver it now! And while you may not be able to get a dinner and a movie, you can lie in bed or on a couch and watch a computer flatscreen (with a 25 foot cable) eating Chinese, or Thai. While you can’t take a traditional vacation, you CAN take a vacation; move to a new central location, which is a base, and then take small trips from there. It takes planning and work (lots), but it is possible. You can order your food online (many stores including safeway offer this option and delivery free for people with disabilities). You can have a standing order. You can order some premade meals to be microwaved from various agencies created to help seniors (you aren’t one, but hey, let them do the heavy lifting!). There is simple tech like clickers for lights or using high tech one way baby monitors so your partner can monitor while you sleep AND have a conversation on the phone at the same time. If you dream it, do it! Find it and do it! Is there a recreation organization for people with disabilities near you. Tell them what your dream is and let THEM figure out how to do it; because if they can take adults who are withdrawn autistic on double kayaks, they can take you, or on hang gliders.
Me, I am going to use my recline chair to watch Bones season 3 with my partner tonight, because I can! Because I want to. See, I went insane, I was covered in pain and I still am. So I need to decide: I can sit and wallow or move forward. Both look tempting. If there was the wallow without the pain, I would for that. But there isn't, so Onward.
I just ordered something I wanted on the net. Yes, it was $20. And yes, it wasn’t absolutely needed. But sometimes, I need to feel that I can do that and NOT feel guilty about it. And that I am not “mad” using my “mad money” – I am, deliberately getting something for me, knowing that there is a chance, hopefully not a big one, that I may not be here when it arrives (insert lilies and organ music!). Because I believe it will give me pleasure. I believe in myself! I get things for Linda too. Last night because A&E had a buy one get one free TV sets – a set on the ‘underground cities’ of current cities – from catacombs in Paris to the ancient aqueducts in Rome, to an entire underground city abandoned in Seattle. We will watch it together and even if we don’t get that opportunity, we had the joy of CHOOSING what we will want to watch together.
Anticipation, joy, a different day tomorrow; all these are sucked away often in Chronic illnesses. IS $14 too much to have something we both want and spent 30 minutes picking out? That’s cheaper than therapy, and if I am well enough, we have some fun in the future.
4) Keep one limb in the world. – I was going to say one foot but if you can’t move those or had them amputated then that is somewhat not great advice.
For me, that is sports, maybe it is a bookclub for you, or meeting someone in a café, or for coffee. On online gaming! Look, I know you have two full time jobs but what I am saying is that winter sucks and that times when things do suck, we need to remember that we ARE part of the world. We may not be seen as much (and we may feel alone, very alone), and it may take extra to extraordinary effort to get out there, but to go, once a month, or twice a month and BE part of it, to be known, to have passing the head nod of, ‘hey, glad you could make it’. All of those aspects which remind us of AB life and AB thinking because I can tell you: all work and no play and no going outside make Elizabeth a little loopy!
I think I better stop there. And stop talking big and start talking small. Because that is how chronic lives are counted, both in days (which pass in blurs) but in the minutes and the pills and the pain, and the calls for help. Also the arguments which after a while you feel there should just be a number. Oh yes, I was going to say, as important as it is for your partner to have their space and time, it is just as important to have your space and time. Your space is YOUR SPACE. Just because they bring you your food, or assist you or anything does not means that your partner or ANYONE has the right to touch YOUR things in your space. And you may need to explain this to different people a few times. But they will get it.
5) I cannot survive by hate. I realize now after a solid month of abuse and hate rained downed on me and Linda that hating back, that what this hate was growing was what Blake called the poison tree. Love and passion wins, over logic, over society, over hate. Yes, there is a time to deal with the issues of agencies and the people attacking you; but I say this from only my own experience, there MUST be a time to stop and step away. There must be a time to say, “They don’t rule here” and where what is genuinely important in this world does. Maybe for you that isn’t a person, it is animals, or even your passion for inanimate objects like books. Many great writers and thinkers both male and female said their best afternoons were ones spent with their books. But find Passion! And I say this to myself: Find Passion McClung. If I can find passion, I will not need to escape, I will not need to kill myself, because I will have something both to hold onto and to look forward to. Find many passions.
Okay, two more quick ones and then I am out of here. 6) Find a friend. If you are reading this, you are one or two comments away from being part of a community. No there is no forum or bulletin board because I am crap at HTML! But there are a lot of people here who are caring people. And if you had to choose a group to start to try and find a friend in, I would start here. Find a friend. To find someone like Cheryl or like Lene, or SharonMV, whose prescence and understanding is carried by years of the hard road of Chronic illness, is for me, worth having the illness. I was well, I was fit, I was successful, and besides Linda, I was alone. I knew after I threw a party for everyone in the fencing group and not a single one of the 25 people came – three blocks from the training area, that if Linda went first, I would die alone. Die as I live, alone and not really understood. Now I know, what friendship, what having a friend, a soulmate means. We can be associates with many. We can have a few who care when we don’t post, or email on weekends when they know we are the most lonely, and fewer still for whom every communication is like the continuation of an ongoing conversation. I don’t know why I have been so lucky, so fortunate in finding someone like Cheryl, for example. Who I KNOW will be with me at the end. Yes, I’m in pain, all the time, and I’m dying. But we are all dying. But few of us are as fortunate as I am in friendship.
7) And the seventh is to serve. Service, is a misunderstood concept, since the King or Queen was considered a LIFE OF SERVICE. To serve is to think of someone, to consider what they could use, whether it is simple and steady communication or random and exciting gifts, or a day out at the museum. Serve. Yes. I am asking even more again. I know, you have two jobs and I have asked for more and more and here it is with more again. Every time you get a postcard and you want to email me or send me a postcard, please do this instead: Think of the people you know, the quiet ones, the ones you haven’t kept in touch with, the one you see at church, the one who you know a little bit about and their story isn’t really that happy, the one who might not have the greatest social skills. If they are NOT stalker material, then please, take the energy, and the time and write them instead. Find a little gift for them instead of me. Please send them a postcard just for them; for me, for you. Yes, this next month is going to be horrid and hell for me. But December is hell for many people. Your act of service may be the little bit that tips the scales from hell to bearable. The thing is, you can only send, what happens after that, if you never hear again, that is out of your control. Deliberate service.
So, you have two lifetime jobs of which any doctor would give you a stress leave, but you can’t get one. Your caregiver can, but you can’t. And you are in pain, and you are working to do more, to do an extra job showing that this illness does not define you. And finding friends, finding love, finding passion (this by the way comes under prioritize – sometimes you just have to say, “And what is the worst that can happen?” – meaning, sometimes I can’t stand any more people, I can’t make it to that pain specialist test, so I don’t. What is the worst that could happen? That I be in horrid pain and face an even more painful death – golly that would be.....well, every day, wouldn’t it? Or that a specialist pouts and they don’t like me? Oh for goodness sakes, I’ll send a note saying, “I’m sorry, now how about YOU trying to act like an adult?”).
Anyway, next week I am going to do an 8K 'Merrython', at Oak Bay, I have never raced that course, I have to check over my racing chair. I have a chance to either have a slim possibility of dying or have a significant experience of doing something that rebels against every idea and aspect of the darkness of winter and expectations of people in my stage of chronic/terminal conditions (and will be COLD). Hell yeah! Let's go! I don’t care that my injuries from the August 1st race haven’t healed yet, at least this one I won’t be overheating.
EFM rides again. I don’t know how I am going to survive this winter but I am. I don’t know how I am going to stop the pain and the jobs from driving me insane, but I AM. And thank you for letting me lean on you, because while it seems my illness hasn’t given me a choice, you have in how to deal with it. How to fight to stay me, and free.
Sometimes, a girl’s gotta fly.
48 minutes ago