I cannot do everything I once did. I do not have the same energy resources I once had. For one, there’s the drain on your energy that simply comes from 24/7 pain. It’s very wearing on a person to deal with pain nonstop. It’s all encompassing and takes over your mental and emotional resources as well as being physically exhausting.
And then there’s the actual fatigue related to my disease.
Yes, everyone is tired. Everyone runs around with too much to do and not enough time. Everyone is tired from staying up to late doing _________ (fill in the blank with your latest late night doings).
But true disease-related chronic fatigue is different. It is fatigue like having the flu – you’re not just “tired,”you’re not “sleepy,” no amount of rest will get you “caught up” and no amount of “stay active to keep your energy up” will work. No lifestyle change will remedy it.
I’ve experienced the “normal” kind of tired – I’ve stayed up late reading a great book and then regretted it the next day. I’ve been busy running around with kids’ activities all week and felt like collapsing when the weekend hit. I’ve laid around too much on a lazy weekend and felt more tired for not doing anything. I’ve felt worse when I’ve eaten worse and felt better when I eaten better. I’ve been there and done all those things and know what they feel like.
Yes, it seems a little dramatic to say that I can’t muster the energy to fold a load of laundry. Yes, we’re all busy and no one likes laundry (at least I don’t think any one does!) but this is not a matter of I don’t want to, I’m putting it off, I’d rather not…it’s a matter of I PHYSICALLY CAN’T do it. I may appear on the outside as if I can – but I can’t.
This is about having a truly smaller tank of available energy to burn through each day. This is the difference between having a gas tank that can hold 1 gallon versus one that can hold 6 gallons per day. My supply of energy that I begin the day with is simply lower and therefore I can’t do as much. And I can’t borrow from tomorrow’s energy to get through today if today is a “big day” because then how will I do even the basic requirements tomorrow? “Pushing through” leads to days of inability to do anything at all.
We tend to expect and accept this as people age – we all know, expect and understand that older people can’t do all the things they once did, and friends, family and volunteer groups often help out. But it’s different at 37. No one expects it, no one really gets it unless their going through it themselves (not trying to be holier-than-thou here – I understood it on an intellectual level before it happened to me but I never truly “got it” until it took over my life), and you can’t see it by looking at me.
I’ve written before about the choices I must make. Do I do less for and with my children , work less , cut out my own hobbies and interests, do less around the house? What is that I cut out?
I can’t cut out work – those bills to pay.
I put my children highest on my priority list, as I want to minimize the impact of my disease on their childhoods as much as possible, so anything I have left after work takes what it’s going to take for the day goes to kids and their activities.
That’s left me with having to reduce what I do around the house (no cooking, cleaning, laundry), reduce social interactions (no hanging out with friends, not really even hanging out with my husband – after using my limited energy to work and be a mom, I’m really left as a zombie the remaining hours of the day) and cutting out my own hobbies and interests (no more dance, no more crafts, I still do photography as it is my last “I do this because I love it and please don’t take everything I enjoy away” thing, but come this spring when the 2015 season begins I will have to severely limit the number of sessions I do as I cannot do what I did in the past especially as my symptoms increase and my work schedule became more structured).
So what’s the point of saying all of this?
Because no matter what I may look like on the outside, I can’t do it and I need help.
Many, many well-meaning, kind people say “let me know if you ever need anything!” and I do believe they are sincere.
What I need is to come home from work and have dinner there (my husband may be running kids around after school and can’t make it and I can’t make it because I just can’t).
What I need is for my car to be cleaned/vacuumed/washed because and it irritates me every time I get in it (hasn’t been done in several years – with kids in the backseat!), but I just can’t do it.
What I need is for someone to come organize/declutter my house for me because I don’t have the energy to do it bag up and remove all the clutter that has accumulated.
But I’m not going to come home and think to myself “so and so said to call if I ever need anything and right now I need dinner to be prepared for us so I’ll give them a call and ask them to bring some over.” I’m not going to one day think “she said to call if she can help in any way so I’ll call and see if she’ll come clean my car for me.” That’s weird, and awkward and often last minute (I never know when I’ll hit my wall) and that’s not convenient for anyone involved.
I was very blessed to have people bring over some meals while I was recovering from a surgery a few years ago – they did it on their own, completely as a surprise to me and I appreciatively accepted the meals and thanked my friends and we all were happy with the social transaction. This type of thing is repeated over and over again across the world as people have babies, recover from an injuries and surgeries, or suffer a loss.
However when it becomes long term the transaction becomes more difficult.
1. I feel wrong asking people – after all, why should I get long-term help from people? Wouldn’t everyone love help with daily tasks? Why makes me so special that I get to ask for it?
2. People don’t think to volunteer – I look fine, they see me and I have on a happy smile at my kids’ event and they have a million things going on in their own life so they just don’t think about it. I’m not being accusatory – I completely understand – I do it myself. Someone looks fine, and the problem is so long term that it becomes a part of the normal and not “news worthy” and it blends into the background of our day to day lives.
3. And then there’s the problem of “but I did this, why can’t I do that?” I don’t ask for help because if they saw me putting on my happy face at a baseball ball game and then I turn around and ask for help making dinner I fear they’ll say “well if you had enough energy for the baseball game you should be able to do dinner” or “if you DO have to choose one or the other you should’ve chosen making dinner and skipped the ball game as that’s not a ‘have to’.”
I’m not sure what the answer is.
I don’t know if it’s that I need to ask directly for what I do need, if it’s that the chronically ill need to educate others in general about what we need, if socially acceptable vehicles/organizations need to be established to allow those with long-term diseases to ask for and receive volunteer help, or if it’s simply that I need to find a way to pay for someone to do the things for me that I can’t do (although that adds a whole new layer of financial struggle to the equation – which is a huge issue in itself!)
Maybe writing about it will help me clarify my thoughts and perhaps help educate both disease sufferers and friends/family about why it’s so hard for us to ask for the help we need.
Maybe people (myself included – as much as I know that I have limitations on what I’m capable of now, I do still want to be a giver in life!) will stop offering for someone to “call me when you need something” and just do something instead without being asked.
Even something very small – just having it done without putting the burden on the person that needs help to speak up and verbalize (and therefore admit to themselves and the world) that they can’t do the daily things that are expected of adults would be immensely appreciated!
Yes. Christine Miserandino wrote about coping day-to-day in her “spoon theory” http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory, but you take it to the next level when you talk about the awkwardness of asking for help. Coping with chronic disease–whatever it is–takes energy and skill. I used to complain “it’s all too much,” but then I started listening to myself, and I was right! It is all too much. Something has to give. These are hard choices. Thanks for expressing it so eloquently.