Can we talk frankly here? I have a serious problem. I don't know how to relax. That probably sounds odd coming from someone with CFS, but that's part of the problem. My motto in my younger days was "Work hard and play hard." I worked hard and accomplished a lot, then rewarded myself by partying hard, too. Even after our kids were born, and we eased up on the party life a bit, I still loved to cut loose. My favorite thing to do in my down time was outdoor activities - taking a long hike, backpacking, canoeing - good, hard physical exertion out in nature that left me feeling relaxed and at peace.
So, I'm sure you understand where I'm going with this. I can no longer go out drinking with my friends or stay up late laughing or go outdoors and hike for miles. But, I think even more importantly, I spend so much time resting (which is not necessarily the same as relaxing) that I feel guilty if I'm not productive the rest of the time. I must get at least 9 hours of sleep a night and take an afternoon nap. Plus, by evening, I'm usually wiped out and not good for much. So, I feel like I have to make the most of my limited "up" time.
Also, just the basic maintenance activities often take up all my energy for the day - laundry, dishes, grocery shopping, cooking, e-mails, writing...not to mention the 4-page long to-do list taunting me with necessary but time-consuming tasks like straightening out health insurance snafus (a full-time job at times), filling out forms, refilling medications, paying bills, etc.
The bottom line is that I almost never take time out of my day (or week) to do something fun for myself. I'm naturally a Type A kind of person, but now my energy and time are just so limited. On weekends, my husband can read his book for hours or sit in his recliner and watch golf, but I feel guilty if I do stuff like that (not that I'd want to watch golf...), like I'm wasting my limited productive hours. The only time I take it easy is if I'm crashed....and even then, if I'm only mildly crashed, I still have my laptop on the couch so I can try to get some easier stuff done.
The thing is that I know intellectually that this isn't good, that it leads to my feeling overwhelmed and eventually crashing, but it's just so hard in the moment to stop getting things done while I still have energy left. So, here I am this evening, totally exhausted with a sore throat creeping in, and feeling very discouraged.
Can you help me? How do you set aside time with your very limited energy to just have fun?
OK, I'm putting down the laptop and picking up my book....I promise!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
22 comments:
Oh boy can I ever relate to that! I teach online classes so I feel that I'm pulling my weight by contributing to the family finances after I had to quit teaching school. But that's not fun - that's work for 3-4 hours a day and sometimes that wears me out. I love to read so I try to spend at least an hour a day reading (not all at one time usually). I'm not much of a tv watcher and don't care for movies (I prefer reading). Finding something fun to do is difficult when there's only so much energy to go around. I'll be interested to see what ideas you get here. I could use some too!
So nice to hear from someone who understands! Yes, my writing is the same - I feel so bad about not contributing more to our household income, so I try hard to make some money writing (very little!)
I love to read, too, but most days that is the ONLY thing I do for myself and then only before my nap and before bedtime.
Watching a movie or TV show in the evening is my time with my husband - something we can share even if we're both totally worn out!
Sue
I love stargazing. Looking up at the heavens and the stars and planets. Since I didn't have to go to work this year I got to watch the meteor shower this past August. It was awesome. I also enjoy sitting outside and watching birds, butterflies and bees. I got to see a hairy woodpecker going after ants in the tree outside my bedroom window. He also got chased around by a nuthatch that was also after ants. I also like lying in my hammock and watching the clouds melt. Napping is fun there too. I could sit at the beach watching the ocean for hours.
Sue
I think you are echoing many of us with CFS/ME/Lyme and Type A personalities. I always used to have 5 things going at once. I remember my sister saying to me once..."You do more being sick than most people do when they are well!" That changed over the years. What I have learned is that it needs to be a change of mindset...of what we were taught...having high work ethics and going full force .....how do we change that and relax? Well, for me, the more I push now the harder it is for me to relax. My mind races even when my body can't. I try not to get to that place first of all. Second of all, finding something that brings you back down to a state of relaxation helps...for me it is two meditation cds I have. Now after using them for months the music itself makes my body relax. I have learned that it is okay I cannot do everything. I enjoy reading, sitting on our porch, and sitting at the park. Reading relaxes my husband immediately and he sits on the porch in the dark before bed and it melts off the tension.
I don't know how much this helps, but knowing you, you will find something that flips the switch for you.
@Baffled -
I also love the ocean and find it instantly relaxing. Unfortunately, we're not close enough for me to get myself there. I so wish I could just go to the beach and listen to the waves and smell the salt air whenever I wanted. Stargazing is another wonderful idea!
@Renee - Insightful as always, Renee. I know you're right about changing my mindset...but it's hard to do! You've given me a lot to think about - thanks.
Sue
Hi,
It is difficult! I was relaxing more when my brain fog was fully encompassing. Since I couldn't work at all I just read or listened to music for hours on end or once in a while go out for coffee with a friend or aimlessly shopping on higher energy days. But now that I 'can' edge maybe 15 hours of work out of myself in a week, I am putting out a workaholic level of energy just to do that, and feel guilty if I put energy into anything else, since it cuts into the already minimal working hours (after not working for a year and a half, I want to make up for lost time but it just isn't possible). So my exercise tolerance is suffering and I barely even do the socializing I was doing. I am expending superhuman efforts just to get in two scant days of work in a week. So I think I will also have to find a way to relax. For me it always seems to fall back on reading or lying there listening to music. But I woke up unhappy this morning because of not being able to exercise this week and no amount of lying there or resting seems to help with that. I was also used to relax by going for long walks or going outdoors. I think whatever it is has to be something away from the computer and not some kind of housework that I can convince myself is 'fun'.
Can you just go for a drive on some country roads, or is this for the times when you're too tired to drive? I find that pretty relaxing. Even just taking your book out to somewhere away from the house can be a good change.
But I suspect, like me, you are just really craving the outdoors life!!! Oh, to be trail running! Especially in the fall, I seem to feel this, with the perfect jogging/hiking weather. I'm probably not helping much here, but I think I get how it is.
D.
@D -
Yes, yes, yes on all counts! Everything you described is true for me, too. I know I can manage more than many people with CFS - and I'm grateful for that! - but it does make it harder to justify doing something fun with my limited energy. You're right - when I was sicker, I spent whole days just reading or even watching a movie on the middle of the day!
I will take your advice about just getting outdoors - I was thinking the same thing today. To even sit out in a lounge chair under a tree in my yard with a book would feel good. Though I agree, a trail run would be awesome...
Sue
I think you need to try to free yourself of notions such as being a "Type A" personaility. Most of us like to get things done, some of us can't as easily as others. This is neither good or bad, it just is.
I look for easily acheivable tasks to keep me going. If I'm only able to do a little, I try to think about the basket of firewood I did get cut up, not the two tonnes waiting for me!
Growing vegetables and keeping hens are good ME tasks. Small short bursts of input are all you need, and you can get inventitive about finding ways to make the tasks simpler. Home grown food is a million times better than shop bought junk. I swap hen egs with neighbours for all sorts - home baked bread, firewood, whatever, and they make great gifts, either as is or turned into lemon curd.
Again, home eggs are so much better than the chicken concentration camp products sold in the shops.
In summary, read some Buddhist thought, and be a home farmer.
Knitting. It feels productive, even thought I'm physically crashed out. You can pick it up and put it down. It keeps my hands busy when I'm listening to a podcast or watching tv. And it is a great distraction. There is research that shows knitting is good for the brain too.
Sue, When you are a "sickie" most people think all we do is relax. If I don't feel well I can't read, watch TV or listen to music. I have to lay in bed, even if I'm not sleeping, I just need to stop everything. I can't wait for the evenings I feel good enough to sit in the family room with the Hubby or my son and watch TV, or sit in the bedroom and read all my favorite blogs. (Yours included) Like most everone else, I like to read, but sometimes my brain is too foggy to enjoy it. Boy oh boy, we all need a few days at a spa!
mo
While reading "The Artist's Way," the author suggests a weekly "artists date." That's where you do something fun and playful for your creative self. I admit that since the kids have been back to school, I've been slacking, but it was really fun over the summer. I did reading in a warm bubble bath, watching a couple of fun indie films at home, sitting on the porch watching the birds come to the bird feeder, finger painting, decorating a cork board, listening to a favorite album (Foreigner's Greatest Hits, it was hilarious, I haven't heard them in so long!), a collage, pressing flowers, and more. And now I'm thinking I need to get back to it, because it was really refreshing and fun!
This sounds more like a time management problem and that infuriating girl thing that we are supposed to be the ones to take care of everything. My husband, who is not ill but refuses to let housework take over his life, does this neat trick. He allows himself say one hour to do housework. He works like crazy in that hour and then he walks away with no guilt that there is still stuff that needs doing. He goes off and does his fun activity for a couple of hours and then if the mood strikes him he might do a bit more housework. Myself I only have 4 maybe 6 hours tops of functional time a day. I refuse to let it all be taken up by housework. Instead if I am having a good day I tidy up one small part of one room and then go off and do something else. I revel in the fact that I have done something. I would be very sad if all my functional time was spent cleaning up. We all need a can of "type A begone".
You got me thinking so much I wrote an answer to your question on my own blog. I included links along with the ideas. Hope you enjoy it.
http://infinatedays.blogspot.com/2010/09/to-do-list.html
Gosh this is interesting! I haven't been on blogger for some time and I saw the first lines of your post and I just thought. "Yes that's the key" I didn't know what relaxation was before I got ill so I totally understand where you're coming from. I think actually part of the reason I've recovered as quickly as I have is that I have completely changed the way I think and approach life. I had no choice of course because I was really very severely ill so I had to learn how to relax and also how to do only some of things, not all or nothing. In some ways you could say I was actually lucky because being so desperately ill made making the changes to my thought processes much easier!
I agree with much of what has already been written. Relaxing is really about learning how to be happy just being. When I realise that I'm starting to do things just to get them done I deliberately stop and go outside for a few minutes or just sit down and stop. I look at the view and watch the birds and wild rabbits or check on how my courgettes are progressing. You don't have to go on long hikes to enjoy being outside. Sometimes I sit for an hour or so just watching the wildlife just because I feel like it. For me some of the most energy draining activities are computer/internet, TV and reading. If I've done too much of those activities going outside or baking usually helps my brain to relax again. I guess it's just a case of seeing what works for you. Mindfulness meditation was very helpful for me with this because it taught me to be aware of my thought processes. This way I can notice when I'm heading in a stress thought direction (and also learnt to stop it with time) and I also noticed what makes me feel happy and peaceful.
I think the thing to remember is that making time for you, to just enjoy doing nothing (or gently do something relaxing) is just as important as doing the chores you're talking about. The reason being is that the more happy relaxing you do the more energy you will actually have in the long run because that quiet time is giving your body time to repair itself - so no need to waste energy feeling guilty, embrace the relaxation with all your heart!
Hope this is of some help. Good luck!
Hi Sue,
I can relate so much to this post.
I know you love reading, so one thought I had was, do you listen to audiobooks? My treat for myself is a monthly subscription to audible.com where I download one book a month to listen to. I love it, and I'm relaxing while I'm listening, because I have my eyes closed.
I also get audiobooks from my library (free!) and put them on my computer to listen to, and I have a huge amount of podcasts on everytopic from US history to Buddhist meditation to the history of serial killers. It's fanastic what's out there to listen to, you can learn - while resting and relaxing!
:)
Em
I think you have touched a nerve here! What a discussion! Yes, I have trouble relaxing too. I was being very disciplined about consciously relaxing with a meditation tape once a day, but that has gone by the board for the moment. Pre-illness, physical activity used to relax me, like a long walk and, like you say, a night out, or a night in with alcohol. That's not possible now and it's been a steep learning curve doing without those things. A good potter around hits the spot if I have the energy. Crochet and TV are my mainstays at the moment - preferably old ww2 films and Star Trek. Sometimes I just sit and stare out of the window at the birds.
Nature. Definitely. Here is the best meditation (and only meditation) I can do: While walking or sitting outdoors, look at the trees or plants. Focus on the perfect stillness in them. Then, shift that focus to your inner body and notice the same stillness there. Hold that awareness for as long as you can. Ahh, just thinking about it gives me peace. Every time I do this meditation (usually on my walks), an involuntary joyful smile comes across my face!
Judy
Uh, that and my sex toys. After all, no one shares my bedroom with me! (We're all adults here, right?)
WOW!! Thank you all so much for all the wonderful ideas and advice. I didn't reply all weekend because I was taking your advice! I spent some quiet time with my family - just what we all needed.
It's obvious this was a topic we could all relate to, and that alone made me feel better. Looks like everyone struggles with finding the right balance in our lives with our limited energy.
I will definitely try out many of the ideas you all suggested - thanks!
Sue
This is a fascinating discussion! To be honest with you, I think I ended up with CFS because I don't know how to relax. I wiped out my bodies energy crunching on a million different things which didn't leave any energy left over for my immune system. I feel like this state of being was extremely destructive to my body since my normal life sustaining functions were severely disrupted. I've only had CFS for two years but I feel like any progress will require me to change my way of being in this world so that I leave some energy for my body to heal itself. I've been listening to Eckhart Tolle's "The Power of Now" audiobook and it is helping me see the world in a different way; not as a series of "to do" lists as I used to see it.
I agree with what secretjane said. I actually see this illness as a blessing in disguise. Its telling me to slow down and let my body heal. If I don't listen to my body, the punishment is the extreme fatigue. I also think of it this way. All the intense work and mind crunching I've done over the last 3 years needs to be undone by 3 years of relaxing, breathing deeply, and meditating.
Thats my latest way of dealing. Thanks again for posting a very relevant subject to CFS. You can tell from the responses that it definitely struck a chord within the CFS community which also leads me to believe that it may be a common underlying cause of CFS.
After reading the entire post and comments, I am still at a loss for what to do to relax. Watching birds and nature lasts me for only so long, reading books leaves me tired as I race to the end, and tv has nothing to interest me either. Crafts are out as I lack creative talent so I'm still left wondering what do I do?
I learn German with duolingo - this interactive language learning site that is very ME friendly - little steps at a time. I do that (when brain fog isn't too bad). Does that appeal?
That sounds like a wonderful idea - fun and educational, too! Thanks for the tip!
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