Tailor of Clouds

I often get compliments on how well I handle my illnesses. Usually when asked for clarification this boils down to: you don't use your illness as an excuse but you manage your boundaries well and you don't abuse the people in your life.

So basically: I do what I can, admit when I can't, and don't expect everyone else to pick up the slack.

I'm always really grateful to hear this. Managing my support network is a skill I"ve worked really really hard to cultivate. Bipolar disorder and anxiety come with fluctuating needs and fibromyalgia comes with good days and bad days, but with each year that passes the bad days will outweigh the good days more and more. One of my deep-seated fears is that I will find out at some point that I've leaned too hard for too long and have burned out those who help me. The thought of finding out I'm abusing my loved one through a steady drain on our relationship is an anxiety that revisits me every time I contemplate asking for help, and often again right after I receive it.

One way to deal with that is to not ask for help. I've gone that route and frankly, it doesn't work and I don't recommend it. I'm a mother, a homeowner, a pet-caregiver, a partner, a daughter, a friend, a lover, and a patient.  All those roles require work and even the healthiest of people sometimes find it hard to work a balance between taking care of others through their various roles and taking care of themselves enough to be able to keep giving. Add in a progressive chronic pain illness and a couple brain mis-wirings and you have a recipe for disaster. When I don't ask for help, things that don't get done pile up, I wear thinner and thinner, and eventually something breaks. Often with disastrous results. That is, I've decided, not an acceptable choice for me. It leads to hospitalization, or anxious children, or dead pets, or financial disaster. I don't want to revisit any of those places; I've seen them all, I've burned the t-shirts, because I don't want to wear them again.

Which leaves asking for help. Repeatedly. Which can be a problem. How do you walk that line between asking for what you need, ie, using your support network, and expecting too much; ie, abusing your support network?

It's been trial and error. I've burned some folks out (and frustrated others who felt I wasn't leaning on them enough) in order to learn these lessons, and I'm sure I'm not done. I'll fuck up more. Hopefully less and less as time goes by; this illness keeps shifting, my responsibilities keep changing, so it's a continual learning process...but here, at the request of a loved one, is what I've learned, in case anyone else finds it useful.

Ask.
You have to ask. Not hint. Not hope. ASK. Figure out exactly what you need, assign yourself the parts you can handle while still leaving yourself a budget of a bit of extra energy, in case you need to call on it, and then specify *exactly* what you need someone else to do. Can you get the kids from school, and help them with their homework, and fix dinner, but you need someone else to take them to sports while you cook? Look around, consult with whomever might be in a position to help, and then specifically ask: "Can you take this child to sports Monday or Wednesday or both so I can get dinner ready?" not "Gosh this is exhausting, I don't know how I'll do all this! ~throws up hands, waits for offers of help to pour in~"

Don't ask the same person for everything.
You know the level of relationship you have with each person in your life. Cultivate them all; online friends who give you kudos and feedback and atta girls when you need them, casual acquaintances who might be able to steer you toward other resources, closer friends who may be able to help you with an occasional thing like a move,  family members who can step up and help with the repeat needs, close friends with particular skills they love to employ, partners who can be there for you for the more intimate needs, professionals who can help with more general care; housecleaning, therapy, medication, etc. Lean on professionals ANY TIME YOU CAN. They get paid to deal with you, and they go home at night and leave you at work. They are the least likely to burn out in the face of your need. There are resources out there, and many of them are set up to be financially achievable with less than you might think; it just requires extra paperwork. Better to spend some of your energy on getting administered to and save your personal support network for the stuff that professionals can't handle. Sometimes what you need isn't obviously assigned to one person: make that one a general request. "Can anyone help with [very specific things with a deadline or timeframe included]?" Then work around the limitations of whomever answers as much as you can. (and be ok if no one volunteers, see below)

Cultivate relationships with people who say "no".
Policing personal boundaries is a hard-won skill that many of us work on (and keep working on) far into adulthood. Find people who value themselves enough to guard their own boundaries. If you have people in your life who always say yes, save them as a last resort. If you can't trust that someone will say no if they cannot help (or simply don't choose to spend their resources on you at this time) then you have to assume every yes is suspect. The people who always say yes are the ones most likely to burn out. Once they do they pile shame and guilt on themselves and either end up...well, either associating you with that pain and not wanting to see you, or deciding helping you no matter what is the solution to avoiding that pain and then you have some strange codependent relationship. Trust me, in the long run, with those people you will spend more energy untangling emotions and needs together than they will save you work with their help. The person who loves themselves enough to say no is the person whose yes you can trust. Ask those people for help first...if they say yes, you don't have to spend time and energy feeling guilty (or at least not as much) ;)

Avoid White Knight relationships.
These are the people who come into your life BECAUSE you need them. They revel in it. Being there for you feeds a need in them to be depended on  and loved. As friends they are ok, as long as you police how often you lean, but as intimates they have always been a mistake for me. They need you to stay a bit broken. When you are doing better they get anxious that you won't need them anymore and start encouraging you to do less. It's tempting, because it is so much easier, but it isn't healthy. That may not be true with all of them, but for many? Watch yourself. It's a dangerous road to walk; the harder you lean, the stronger they seem, and the temptation to lean on them more and more and more is pretty overwhelming. Soon you won't be doing as much as you could be, and then you aren't choosing to be in the relationship, you are desperately dependent on it. Long term illness in a relationship already promotes an unequal power dynamic, try not to exacerbate it.  This is different from Natural Nurturers. NN's enjoy helping you, but they also see you as strong and capable and will rejoice in anything you manage to do without them, while genuinely enjoying being able to step in when you reach the end of your abilities and need something they can give. If you figure out how to easily tell the difference, please clue me in. I'm still learning this one.

Be ok with being told no.
I'm gonna say that one again:

Be. Okay. With. Being told. No.
This may be the most important thing on this entire entry.
Be okay. with being told no.

Be *genuinely* ok with it. It is really tempting, when dealing with needs you cannot fill to think that because something *needs* to be done, that if you can't do it, it is the responsibility of those who love you to meet that need. That isn't true. If something *must* get done, and you cannot do it, sometimes it...just doesn't get done. It isn't a failing of your support network when that happens, it is a casualty of your illness. It's terrible luck, but it isn't a sign that your support people don't love you. Let me say that again: Not being able to pick up the slack is not a sign they don't love you. It is not a sign they don't care. It is not a sign they don't take your need seriously, or that you aren't important, or that they don't wish they could help. Everyone needs to police their own resources and your responsibilities are, in the end, just that...YOUR responsibilities. If someone says no, if everyone says no, and the thing does not happen, be ok with that. Take it as a learning experience so you can better decide what to prioritize next time, and move on. Don't be bitter or feel unloved or get angry that they "weren't there for you". Shit happens. Sometimes things fall through the cracks. Sometimes things drive right off a damn cliff. It isn't the fault of anyone involved. If you need to be angry, be angry at the illness..wallow in how fucking unfair the whole thing is. Then stand up, brush off, let it go, and do the next thing...even if that next thing is dealing with the fallout from the thing that didn't get done. Unless someone or something died, just about anything can be fixed....or healed and forgotten with enough time. If you can't be ok with no, then your support team can't tell you no...which means their yes is suspect, and you are right back on that road to wearing them out and causing them to have to retreat to save themselves. Pace yourself. and let them pace themselves. When you are dealing with chronic, or any long term, illness, pacing yourselves is vital. Some things just won't get done. Full stop. They won't. Be ok with that.

Be aware and be grateful.
Be aware of how difficult it is to watch someone you love struggle. It's hard to deal with pain or brain chemistry issues or endless doctor's appointments, to manage meds and therapy and well-meaning people with ideas and advice you've heard 50,000 times since your diagnosis. It's exhausting to juggle med changes and side effects that make you feel like crap. It sucks. It. Sucks. But it is even harder sometimes to be the one watching. Be grateful they are in your life, and remember to tell them that. When you have a relationship with someone with a long-term illness, you have to carry more of the weight of the relationship. The ill person can't possible do half the work. Some days they can do 40%, some days 10%, rarely can they do their entire 50%. Being the person who never knows, one day to the next, whether they'll be doing their own half or half again as much to maintain the relationship or the house or the finances or the family is incredibly exhausting. Carrying a relationship where you don't feel you can get sick, or stressed out, or need help, because the person you are with may not be able to step up is frightening. It's so easy, when dealing with ongoing illness, to get caught up in your own pain, your own exhaustion, your own needs. To feel like others should be grateful you even managed to get out of bed today and not expect more of you. To let them carry most of it all the time because you have so much to carry in your own corner. To forget to say thank you. Don't forget for long that they don't *have* to have you in their lives. They *choose* to. They choose to do the extra work to carry your relationship. How loved you must be, to be worth that! I tell my partner of 8 years on a regular basis "I'm so grateful for you, thank you for choosing to be in my life", and I very deliberately chose that phrase. I tell my co-mother how thankful I am that I can trust her yes and that she is so willing to hold me to high standards and not let me get away with being passive. Tell the people in your network you appreciate them; acknowledge that they don't owe you anything and make sure they know you see how hard they work to help you. If they do a thing for you every week or every time it comes up, don't get complacent; ask them each time, say thank you each time they are able to do whatever that thing is, be ok each time with the possibility of a no. Most importantly *do all that you can do*. Don't get into a rut...if this week you can do 40% of the work, DO IT, even if you both have gotten used to the fact that for the last three months you couldn't do more than 10%. People are much more willing to accept they have to do more most days than they would with a healthy partner/friend/co-worker etc if they *know* you are doing all you can do every day that you can.

Contain your rants.
It's ok to need to bitch sometimes. Chronic and long-term illness sucks ass. I've been diagnosed since 1995 with bipolar and anxiety, and since 2000 with fibro (after chasing an answer for almost a decade). I've spent a lot of years coming to terms with the fact that I'm ill, that I'll get worse, that it will never go away, that I will never know who I could have been or what I could have done if I'd been healthy. Even with all that mental work I have some days where I want to scream and cry and throw things and rail against fate for how completely and utterly unfair it all is; how heavy the burden, how rough the road, for me and for those I love and who love me. It's ok to do that...sometimes. Wallow in it when you need to...but don't live there, and don't expect anyone else to visit that place on the regular with you. Journals are good. Therapists are better. Many of them will do sliding scales, there are even therapists who will meet with you via Skype.  If, like me, you need to feel heard, and you are between therapists, online journals are good. That way, those who can hear you when you post, will, and those who just can't today don't have to. Consenting to climb into that pit with you is an important part of not being too exhausted to climb back out. Not being able to go there with you this time doesn't mean they don't care...it just means their energy is needed elsewhere. If you find yourself starting a rant or a complaint or a bitch session, and they try to change the subject or seem uncomfortable, apologize and move on to something else.

Illness is a reason, not an excuse.
Can't do the thing? Say that. Politely, consciously, matter of factly; don't hint and wait for them to give you an out; be clear on your boundaries. Sometimes you have to cancel; apologize when you do, and don't do it casually. Try not to overcommit yourself...and if you do, learn from that so you'll be less likely to do it again. Buy yourself time to think; "that sounds like so much fun, let me see what is going on closer in and I'll let you know" is better than "heck yes I'll be there" in order to feel you are pleasing them in the moment of the invitation or request followed by a cancellation on the day of the event. As soon as you know you can't do a thing or fulfill a commitment, speak up. Apologize. Clearly. Once. More than one apology for the same instance of an offense tends to make people feel they need to reassure you. Don't add emotional obligation from them to your withdrawal from an event or responsibility. Be upfront with people about your limitations. Learn to explain your illness without preamble or complaint. It's important to be clear about your limitations; it's equally important not to derail a negotiation into 'let's discuss how my life sucks'. When you fuck up...don't blame your illness and try to dismiss your responsibility. I had to cancel? It's because of pain which isn't my fault. I *still owe them an apology*. Do everything you can, when you can, push yourself if it is important enough. Find out what helps you cope. I have anxiety and sometimes that makes it hard to leave the house. So I set things up to help me. For instance; I've learned if I'm picking someone up or they are picking me up I'm more likely to get the momentum I need than if I'm meeting folks there. I make arrangement accordingly. Sometimes an event or a person's needs are worth borrowing spoons and paying for it later. If they know you'll do that for them when they need it, they will feel they can count on you too. Sure, other people will always have to do more than you in this relationship, of whatever variety it is, but make sure you don't use your illness as an excuse to not do what you CAN do. Do all you can, when you can, always and in all ways. It's easy, with ongoing illness, to lose track of time as you struggle through each hour of every day; use your calendar, use your phone alarms. They are useful for med reminders and appointments, but they are also useful for reminding you to reach out and touch base. Voxer is your friend; it's easier than typing and less intimidating than a phone call. Doing what you can to be there for the people who support you helps them know you care about their needs as well as your own, which helps keep them from feeling used and resentful. You love them. Help them know it. Some days your pain or side effects or lack of rest or emotional exhaustion will make you short tempered. Don't excuse yourself for that. Apologize. Then try not to do that again. Maybe you need to say "today is a fragile day and everything feels like an attack. I need to hermit/cuddle/Netflix/hide" or "today is a bad pain day; I'll try to be nice, but if I get short tempered, please feel free to call me on it and I'll reign it in". Learn to recognize the days you won't be a good partner/parent/friend and adjust accordingly. Don't use your illness as an excuse to be an asshole.

Be ok with letting go.
Sometimes, no matter how careful you are to ask specifically for what you need, or to spread out requests across your network, or to model being genuinely ok with not getting help, someone will get tired of dealing with the extra needs a relationship with you brings into their life. They'll withdraw; some gracefully, some awkwardly, some will just stop calling and coming around and you'll wonder why you can't get a hold of them. Sometimes it means they are flakes, but often it just means they don't know how to tell you they need to leave. Sometimes once they heal they come back, sometimes they don't. Be ok with that. Loving someone with the kinds of extra needs chronic pain or ongoing illness or mental illness add to a life is hard. It's exhausting. It's frustrating. It's heartbreaking. Sometimes people over-extend or just get worn down. Don't chase them when they walk away. Be grateful there were in your life, be ready to welcome them back with open (but not clutching) arms if they return, and be gracious if they can't come back. They loved you. They loved you enough not to stay when they needed to take care of themselves. They trust you enough to know you can manage without them. I had a boyfriend in college, before I'd learned most of this, when I was still dealing with undiagnosed pain and only recently diagnosed mental illness, who did me the biggest favor anyone had ever done for me to that point. He left. I was leaning harder and harder; letting him carry the burden because he *would* and I didn't know better yet. It was affecting his ability to do what he needed to in order to pursue his degree. His best friend said he shouldn't leave; I might kill myself. That was a reasonable fear at the time; I was a cutter, with really high and low mood swings and a psychotic episodes, and a few years later I did attempt suicide, so that fear was not misplaced. He loved and respected me enough to believe I would be ok; that I could manage better than I was doing with him there to lean on. He loved and respected himself enough to know it was time for him to walk away and let me handle my own life so he could handle his. He was willing to risk that I might harm myself because he acknowledged that I was my own responsibility.  He valued himself enough to declare his boundaries and walk away rather than staying and ending up resentful. I was devastated when he left...and a year later I met him for lunch to tell him thank you. He was right. I *could* do more to take care of myself than I was doing with him around. Sometimes the best thing someone can do is realize you are using them too much and leave before it becomes habitual abuse of their energy, time, and love; before you forget what you *can* do.

Learn to prioritize.
Only you are responsible for your needs. Only you. No one else. Your support team can help when they are able but in the end you have to be able to maintain the basics needs of yourself and your dependents even if, in the face of a particular need or set of needs, every. one. of your support network has to say no. Figure out what can be let go of, figure out what must be done. Do the things that have to happen to avoid long term consequences, and be ok with nothing else getting done. Home still standing? Dependents still alive? Took your meds? Today was a good day. Go to bed. Tomorrow will be another day. That's all life is. A series of days you do your best to get through to try to get ready for the next. Do your best. Every day. And if you can figure out how to be consistently ok with the things that don't get done on the days where all you do is keep your home standing and yourself and your dependents alive...publish your secret, because that shit is hard, yo.

So there it is. Managing Support 101. Ask specifically, spread out your needs when you can, be ok with no, and know the buck stops with you. Prioritize and be ok with anything that doesn't get done just...not getting done.

Some days I manage that really well. Some days I just don't. I like to think the days I do well outnumber the ones where I stumble. :)