*yeah, I said it*
Although I've been dealing with lymphedema for a few years, I must admit that lately I really am not doing a great job managing it. That makes me sad and it frustrates me. I am working really hard to finish my book as well as publish this blog. That means that I sit a lot for long stretches of time with my computer in my lap just typing away. I can be so engrossed in my mental work that I forget to eat or do my exercises. That is not good.
I spend a good amount of time with my boyfriend -- especially on the weekends -- and we're kinda couch potatoe-y too. Our time together is usually quiet; we're on our computers together, watching a show on television, sitting in a bookstore or a coffee shop talking or reading. The time together is great. I enjoy his company. But if we don't get more active, I'm going to have to slice off some of the time we spend together just to ensure that I'm doing what I'm supposed to -- exercise and massage to control my lymphedema.
I am challenged because when I'm in a zone, I rarely want to stop to do anything. I'll go to the bathroom but that's it. Its great for me creatively but horrible on my body. Right now its 4 am and I'm just getting in bed. (I never slept at all last night) And so... my left arm has been bugging me something serious. I noticed about an hour ago that my ankles were swelling from sitting still so long. I fell asleep in the chair for a short while -- with my arm twisted up under me.
*sigh*
I am exhausted.
I keep asking myself why I'm pushing so hard. And I don't really know. I can easily get lost in my thoughts and writing... and not realize how much time has passed since I last moved around. I know that to some people, sitting still for hours just reading and writing feels like punishment. For me, it is nirvana. Until I realize that I haven't eaten for hours or moved for hours and now my body is rebelling.
I simply must do better. I was just online reminding myself of the things that I need to do to take care of myself and my lymphedema. What I need to do is basic:
- Regular exercise - I need to make a commitment to myself to walk at least 30 minutes every day. No excuses. I want to work up to walking for an hour or running for 30 straight minutes.
- Regular massage - I have a large electronic massager that I use to massage my arm. Well, I'm supposed to. I try to use it at least once a week.
- Lymphatic massage - Although I did go through physical therapy for a couple of months after my lymphedema was diagnosed, I was not taught how to administer lymphatic massage for myself. Thankfully, I have found several great videos on youtube that have shown me what to do. When I do it, it is fantastic and I see results pretty quickly. I just don't do it like I'm supposed to.
- Elevate my arm regularly - I fail miserably at this. I am supposed to rest my arm in an elevated position when I can, and when it seems that the swelling is coming back. I have been doing it more at home but when I'm out, there just isn't a way to do it and not look like a weird freak to other people.
- Compression garments - this is the only thing that I do every day. Without fail, I wear my sleeves. When my hand shows signs of swelling, I will put on a gauntlet to work that fluid back up my arm. But I am slightly failing here too because I need new sleeves and I haven't made the investment yet. At a cost of $150 for the set, it just isn't high on my list of priorities. I may need to readjust my thinking.
I'm also having major difficulty with my sleeping position. I lay on my side. I have slept on my side since I was a small child. Unfortunately, I sleep on my left side -- and that is my lymphedma arm. Which means that my arm often gets smashed all night with the weight of my body on it -- which only makes it even more difficult for the fluid in my arm to move around. I am slowly making incremental process in forcing myself to sleep on the other side.
When I crawled into bed, I felt tired and I was so angry with myself for allowing things to get so out of wack. I am having a hard time finding a balance. I want to get my life (and my lymphedema) in balance. But on this issue... I feel really alone. The people in my life have no idea what I'm dealing with and I honestly can't tell them without feeling like a let down. Lymphedema sucks. It really does. And knowing that there is no cure for this and I will always have to worry about controlling this swelling, makes me irritable...
Those who are affected, how do you deal with your lymphedema?
