Limitations

“Shoot for the moon. Even if you miss,
you’ll land among the stars.” – Les Brown

Most of us are told growing up, if we are lucky, that there are no limits except those we impose on ourselves. We are encouraged to be independent, pioneering individuals; free thinkers who take the initiative and make our own paths in life. On the opposite end of the spectrum, those of us with Lymphedema are given strict limitations and told to confine ourselves to them while staying positive which can seem like a contradiction.

My right wrist has been stiff for the last few days and won’t pop. It is difficult to pick things up and my range of motion is limited. It’s a little swollen, all because I did something I normally do and didn’t think about it till after the fact.

Theatre de L'Elephant

I have been converting a box into a paper theatre for a Kickstarter video featuring a book project I am launching soon. I used my awl to poke holes into the top of the box. No big deal, but my wrist hasn’t been the same since. It was within my ability to do, and I didn’t want to wait all day for my husband to come home to ask him to do it for me. I don’t have an issue with asking for help if I really need it, but I don’t like piling more on my husband when he gets home from work. He’s a huge support, and would do it without complaint if I asked him, but I don’t like being a burden. So what it comes down to is the fact that I need to rearrange my own way of thinking about all of it, not his. It’s my insecurity about it, so I’ll reevaluate.

It is hard to reign yourself in when you have been so used to doing the simplest tasks for yourself. You feel like a burden, even to yourself, and it can add to the already potentially depressive lifestyle of LE. You have to rework your thinking, though, and be gentle with yourself. LE is a definite lifestyle disrupt, but you have to reset and reevaluate, pick your battles.

Taking my own advice, I came up with a few things.

Breaking Things Down

Some of the things I can do for myself to make it a little easier next time…

  • Make a list of all of the things that I need to get done, then figure out what my daughter could help me with and what I’ll need to ask my husband for help with. Most things, when I look at the list, my daughter could probably help me with so I won’t feel bad about hitting my husband with all of it.
  • Plan out projects ahead of time and schedule work sessions around the availability of help. In other words, don’t start on something I need help with in the morning when my husband is at work. It will just make me antsy all day and I’ll end up doing it myself so that it’s out of the way. There’s plenty of other things that I can do in the meantime. I’ll feel productive, I won’t endanger myself, and I won’t make myself crazy waiting.
  • Schedule help ahead of time for larger projects. Let my daughter and husband know that, for example, I want to move furniture on Saturday. That way they know how to plan and it is less stressful on everyone.
  • If you have a lot of little tasks that you need help with, schedule one block of time to get it all done.

Working on the paper theatre, there were several elements I should have had help on. Gluing and cutting paper, no problem. Scanning, no problem. Cutting the box and poking holes, ask for help. Using a pair of scissors to cut cardboard seems minor, but it can make hands and forearms swell. I have to look at what I can do, though, not what I can’t.

Photo Credit: angus clyne via Compfight cc

Being Like Water

All in all, the sky is still the limit. There is still so much we can do, even with LE, we just have to adapt and readjust. When I think of adaptation, I think of water. I am a water sign and adaptation has been a lifestyle for me, whether because of outside forces or my own doing. One of my favorite quotes about water that sticks with me is from Arthur Golden’s Memoirs of a Geisha.

“Water is powerful. It can wash away earth, put out fire, and even destroy iron. (…)
Water can carve its way through stone. And when trapped, water makes a new path.”

Being like water means adapting to your environment. We all live in our own little biospheres inside of a larger world of organized chaos. Ever changing, we have to be able to adapt in order to survive. And, sometimes, no matter how much we plan, things happen and that’s ok. It is what it is. You learn, you adapt, you move forward.

Keep Moving Forward

Even if your pace is slow, as long as you keep moving forward you will see progress. Be gentle with yourself, it’s ok. Do what you can, plan ahead around the things you can’t to minimize frustration, and realize there are other ways to save the world.

Not talking to myself.

It’s been a while since I’ve posted, life sideswiping me in its typical fashion. The day-to-day is like a broom sometimes, sweeping me along until I think to put a foot down to stop it. The foot, in this case, was someone else’s. I was contacted by someone on Facebook and reminded why I started this blog. I got the chance to talk to her and, such kind words, it was like the first time someone ever told me they were a “fan” of my work. It’s humbling.

That one email also served as a reminder that I’m not alone and that I make a difference.

Living Life

I’ve not wrapped in over a year, my last therapy sessions ending abruptly after only a few weeks. I continued wrapping for about 3 months on my own afterwards before the depression and exhaustion took hold. Not the kind of tired that a quick nap will fend off, but the overwhelming worn out that comes from wrapping and rewrapping multiple times every day. It can be debilitating if you let it take hold, so I stopped to regroup and live my life. The cost is losing ground on progress, though, so it is a trade off: Stay sane and off balance physically in order to research other options, or continue with risk of further physical damage and crawl into a dark hole. The latter isn’t really an option.

The Not-Tos

I have help when I wrap. My daughter helps me reroll bandages and my husband Val, bless him, helps me hold my leg aloft while I wrap. I have a hernia from my c-section, confirmed by a previous therapist last year, and have been instructed not-to-lift, not-to-bend, which leads to not-to-function. I was told not-to do dishes and not-to vacuum as well and my husband is the most understanding guy in the world. I can’t live my life like that, though, not being able to do ANYthing. I’m fairly independent, stubbornly so. I have no problem asking for help when I need it, I know my limits, but I cannot reconcile myself with the idea of putting my husband to work doing everything around the house after he gets home from his regular job. I’m not the sit-and-eat-bon-bons-all-day kind of girl, so I have had to come up with alternatives to my lack of therapy.
 

Sold for a good cause

Cravings

Giving up coffee and soda, my legs went down to half the size they were (which is huge) and became more pliable within a week. I have to force myself to drink water, easier some days than others, and it is the only thing I order when we are out aside from a sweet tea once in a while – which is probably just as bad, but I’ll pick my battles. I’m not perfect, I slip up sometimes, but the physical difference is apparent almost immediately.

I had thought that discontinuing the coffee would be the hardest, but I was wrong. The craving for that occasional soda is a lot worse. I can stave off the craving by having a sip of my husband’s if he gets one, which is better than drinking a whole one myself, or by drinking water, but the latter doesn’t always work. I’ll give myself infrequent coffee as a treat, but double up on my water intake. I’m weening myself off it successfully now and there is no guilt, I refuse to give in to it. It is what it is and I am making it happen in the way that works for me.

Growing up, somewhere in my 20s, I remember my ankles swelling. I camped almost every weekend with a medieval reenactment group and soda (especially Mountain Dew) was prolific with the other campers. I don’t remember what kind of soda we packed, it has been more than 12 years since I have been able to camp, but I remember somewhere along the line that my ankles would swell. If I’d had more than one, my ankles would get noticeably bigger (I hate the term “cankles”) and a friend would always tell me to stop drinking soda. He worked as an EMT in another county, but never mentioned LE. I backed off of it a little and started packing raspberry sweet tea in cans. The ankles stopped swelling, but the soda was always in reach so it was hard to avoid and a little ankle swelling got rationalized into a mixture of excuses – too hot out, walking in sand, too much standing, just get your feet up. Eventually I stopped drinking soda because I liked the tea and I put my feet up all the time. After that nothing noticeable happened until my pregnancy years later.

Sharing

I am going to try to get on a schedule this end, posting at least weekly now that I know someone is actually seeing this. I’m feeling renewed and I’m hoping to incorporate a bit of artfulness into this space as well. If you have resources, please share them and I will add them to the page. I’m working on some freebies for download as well.

Till then, thank you for being here and hang in there, it means a lot.

Bouncing back.

We all had a run at the stomach flu recently that was going around, my daughter came in first place with a hospital visit and eight hours of vomiting. Having fallen off the truck, I haven’t wrapped in almost two weeks. I have been so wiped, I haven’t had the energy to do it, and I have been so busy that I haven’t been able to get off my legs long enough to get them down for wrapping.

So, in honor of my need to get back on track, today is “Stay Off Your Legs and Barricade Yourself in Your House Day”. I think we all need one of those occasionally, especially moms. The key is no guilt.

Past is, well, past. Holding guilt in your body over something that has already happened serves nothing but to make you ill. It’s done. You can’t change it. Better to focus on what you can do and pour your energy and self into that. Let yourself off the hook and keep moving forward.

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New inspirations.

For now, I am dreaming of breakfast in bed and a morning of looking at art magazines while my legs are up. I’l tackle the rest of the world, and my legs, a little later and move forward.

Hang in there!

Hope.

I am very blessed to have the support group that I have. To know, when I wake in the morning, that I have people around me that love and care for me, is a tremendous gift. I haven’t always had that and I wonder how those tho deal with LE on a daily basis cope without one. My husband, Val, and my daughter Ysa make for an incredible pep squad and I could not get through the daily part of things without them. In the last month, I have I have both started and stopped therapy, lost 33 pounds, and have become more self-reliant with my therapy. The therapist that I had briefly helped me to slowly regain my footing, allowing me to get my head back in a place where it needed to be.

Having and then losing therapy due to finances five years ago was devastating to me on every level. I knew that starting over was going to be tough and that I was at a place where I was going to have to have therapy (MLD) before I could do it myself. My disability case is on hold till I could get on a judge’s docket, possibly till December, and I couldn’t wait. I was led through two different people to someone who offered MLD and CDT, and the next few weeks were wonderful. It was only for three weeks, but it had served its purpose and losing therapy was a good thing. I needed to be more self-reliant in my therapy and no one could wrap as well as I could wrap myself, a lesson learned from my original therapist years ago.

I knew it wouldn’t be an overnight thing, but the strides that have made have been incredible. I have cleared my plate, removing potentially stressful things from my life, and I am focusing on Art for Cures and my own projects for a change. I have been able to face my fears and turn my head around regarding therapy and what I needed to do.

There are always going to be days where I don’t want to wrap, where I am so exhausted from living my life that all I want to do is sleep and avoid it, where I get frustrated by the inconvenience of having to schedule my life around my legs. But there are also days where I remember that my daughter and husband can wrap their arms around me now, where it isn’t a strain to pull my leg into the car or walk with sandbags around my ankles, where I remember that I won’t always be like this if I work at it and where I am full of energy and hope.

It is hard, daily work, but the benefits far outweigh it all. It goes beyond portion control, wrapping, rewrapping, and laundering bandages. It is about hope, health, and becoming who you are inside. It is a growth process on all levels and I am happy to be back amongst the living.