Wednesday, May 22, 2013

parenting with chronic illness: how i'm travelling

before arty was born i wrote a series of blog posts about what it was like to have chronic fatigue syndrome, anxiety/panic disorder, and depression. the point was to be open about what i was bringing to the table as a parent, and to reflect a bit on what chronic illness might mean for my particular parenting adventure.

since then i haven't discussed it much. i've focussed on food, play, arty's development, and other happy things. not on the hard bits.
this isn't altogether a bad thing. for one thing, my life as arty's stay-at-home-mum is a genuinely happy one, and i really do have so much fun playing with him, learning with him, loving on him, and caring for him. i also think that focussing on the hard stuff isn't always helpful.

that said, i think it's important to acknowledge that things aren't always easy. it's ok to struggle, and have hard days (or weeks!).
in the world of online communication, we only present the aspects of our lives that we choose to. when we only share the rosy bits, we can give the impression that we have it all together, which can be hard both for others to compare themselves to, and for us to maintain.

so i'm here to say that i don't always have an easy time of it. i am parenting with chronic illness, and it's often really hard.

we've actually just been through a particularly shitty few weeks here. i've had a bad back, sj has had to take some time off work to help look after both arty and i, and on top of everything arty got really sick with a nasty tummy bug and ended up in hospital. this confluence of events has unsettled all three of us, and has left me feeling extremely vulnerable, fragile, and completely exhausted. i've been reminded of how careful i need to be of my health, and how hard that is when life is unavoidably hectic and full of unexpected events.

this is my tired face

i've also taken this time to take stock of the really good coping mechanisms i have in place, and i thought i'd share them:

communication
there are two facets to this
a) at home - sj and i do our best to be as open as possible with each other about how we're feeling. this helps us to be supportive of each other, and not to get overly frustrated with each other when we're having harder times.
if i'm starting to get symptoms of a cfs flare up, i tell her what's going on, so she knows that i might need a little extra help for a day or two. similarly, i let her know if i'm feeling really good, so she can then take time to focus on herself for a while and not fret about me.
b) with friends and family - we have a wonderful group of friends and family, and i'll often have a wee vent to them via twitter, or on the phone. talking about the harder days helps me feel connected and supported, even if it's sometimes from a distance.

a care package from our friend anna, who knew we were having a tough week

accepting help
this is a really tricky one, but it follows on from all that communicating. the fact is, if you have good people in your life, and they know you're struggling, they usually want to help.
this week we've received a care package from one friend, a home cooked dinner from another, some sweet treats from friends who wanted to cheer us up, and a lot of help from my beautiful mum. while my back was particularly bad different people took it in turns to spend time with me at home and help me when i couldn't lift arty. they helped to keep me chipper too, which was very important!
sometimes it's material help, sometimes it's moral support, and it all helps. the better i get at saying 'yes' to it, the easier the down days become.
and when i start to feel like a big old drain on everyone that loves me, all i have to do is remind myself that these people all know that i would do the same for them and not begrudge it for a moment. because that's what friendship is.

scheduling
our family has a daily routine. we're not completely rigid about it, but our days follow a predictable pattern that helps all of us feel a little more in control of our lives.
this structure is particularly important for me in coping with exhaustion and anxiety. i find it easier to get through a hard morning if i know that arty is going to be ready for a nice long nap at noon, and i'll be able to have a cup of tea, something to eat, and regroup. it gives me a framework to factor in self-care, and that's so important when you're trying to manage chronic illness.



doing stuff that isn't about the baby
all the parenting books say to do this, and i understand that it's much easier said than done, but it's another one of those psychological things that helps us cope.
time where the baby is taken care of, and i don't have to think about his belly or his nappy or his mood is incredibly restorative for me.
i find that it's best if i do something that actively engages my mind during this time, so that i don't spend this precious break thinking constantly about him. playing d&d with friends is one way that i do this, and reading, going to the movies, and sewing are other things that i like to do.
these breaks don't have to happen often, but i do actively have to make time for them, and i always feel better for them, which in turn allows me to be a better parent and partner.


i'm not suggesting that i have found the perfect way to deal with the problem of parenting with chronic illness, and that others should follow my formula.
i understand that i'm actually very privileged in many ways.
not all parents with chronic illness are partnered, and i imagine very few have someone as wonderful as my sj to parent with.
i am also lucky in that i am not geographically or socially isolated, so i can access my support networks with relative ease.
that said, i hope that maybe some of these ideas can be helpful or encouraging for other people, or at least lead to some discussion on other ways to make things easier.

6 comments:

  1. Thank you for sharing how you are travelling. It's great to know you have support networks in place, and ways of coping when things don't go the way they should. I, too, have a chronic illness, and I wonder how motherhood will fit in with all the complications that my illness entails. Reading your story is very encouraging, and reminds me that we are more resilient than we give ourselves credit for, and ensuring the structure you mentioned makes things much easier. I take comfort that my possible future mama story will be just as you explain. With complications, with stress, but surrounded by love.

    Huge interweb hugs!

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    1. i am so glad to have been an encouragement to you!
      if i have learned anything from parenthood so far, it's that it teaches you just what you're capable of. and that's so much more than you might imagine.
      love is an amazing enabler.
      hugs to you too!
      x

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  2. This is such an interesting post. I read it earlier, but it is easier to comment on my computer. :)

    I hope your post can help other people in your situation. Hell, it helped me in my situation, and I don't have to deal with anywhere near the same stuff you do!

    I think the communication point is best (or I guess best for me - the one I need to work on best that would help me most). :)

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    1. i guess it applies in all relationships, doesn't it? communication is essential to understanding and working well together as a team, whether that's a workplace team, a family team, or any other kind.

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  3. Great post. I love your strategies for well-being management, particularly your acknowledgement that we must take time to do things not "about the baby."

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    1. so much easier said than done! especially when your kid is having a tough time or is high needs. but it's hard to be a good mum if you're run ragged!

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