I am feeling overwhelmed today about how much I need to do that isn't getting done. This is pretty much a constant source of frustration for me, but some days are worse than others. I've had a cold all week, plus my period, plus the usual CFS stuff, so it's been a triple whammy. I suppose given all that, I should have lowered my expectations of myself, but that's another thing I struggle with!
Before CFS, I was such an energetic, productive, efficient person! I took care of my family, cleaned the house, worked in the yard, played with my kids, exercised, and spent time every day writing and sending pitches to editors. Now, most days, it seems I can barely manage the bare minimum of necessities.
I guess a big part of the problem is that neither my goals nor my to-do list really reflect my true abilities now (or lack thereof). It is so hard to give up on dreams, and there are so many things I truly want to do, not to mention all the stuff I really have to do. But my list just keeps growing, and it just feels more and more overwhelming.
And on weeks like this one, with so little energy to begin with, I just can't make any headway at all. Just the basics of living - preparing meals, doing laundry, picking up kids, taking showers! - take up all of my energy (and sometimes more than I really had in the first place), leaving nothing left for the things I truly want to do. And that doesn't even begin to include all the critical stuff that must be done, like school meetings, getting the kids to doctors' appointments, filing insurance claims, sorting out problems with insurance claims (a full-time job in itself!), ordering and filling medications and supplements each week, etc.
sigh....I know I have written on this topic plenty of times before here, but I was just feeling especially frustrated and overwhelmed tonight. The ironic thing is that with so much time devoted to "rest," taking care of myself is actually one of the lowest priorities on my list which of course just leaves me with even less energy, in a vicious downward spiral.
I'm feeling too run-down to even think about it anymore. I'm sure things will look better tomorrow.
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.
15 comments:
"The sun will come out tomorrow...." came to mind when I read this. You are so good at seeing that, but alas there are times where our frustrations just need to be released. Your description is so right on. Hugs and hope for a better day tomorrow.
always tomorrow sue - you are right - and may it bring you what you need - thinking of you.
Sue, I think I've written this post several times myself. I try to think of all the little little things I do that make a difference when I feel this way (not that it always helps rather than all the bigger dreams, things I'd like to be doing to participate in life. Someone I know recently posted a Mother Teresa quote and I will misquote it here, but I thought it was a good one for us M.E.ers. something like..."not all of us can do great things, but we can do small things with great love"...maybe that's what you are doing just caring for your family and activities of daily living.
Thanks, everyone, for the support. And that quote DOES help, upnorth!
I am a bit better today mentally, though still didn't get anything done - shower, doctor's appt, nap, school meeting - there's another day gone! lol
It definitely helps to know I am not alone.
Sue
This post really makes me NOT want to have a family. Too many added responsibilities, which means too much added stress.
Sue,
It sounds to me like you are getting a LOT done. You just need to be reminded of that:) I so understand tho that things like laundry, dishes, meals, etc.... didnt used to count... and now they are big deals. You are a super strong woman and "this too shall pass"..... there will be better days again. Hang in there!
Glad you're feeling a bit better today, hope it continues.
I find it helpful to have two lists. One with all the bare necesities, including looking after myself. And one with all the aspirations and longer term goals. The second one gets hidden away on my not so good days. I know that the only way I'll get to it is to look after myself properly so that my energy improves!
On my really bad days I write down every single little task that needs doing in a day. not just shower doctors appt. etc. but morning supplements, breakfast, put away dishes, washing up , clean kitchen surfaces, rest, make cup of tea, etc. etc. and cross them off as I do each one to show me just how much I do actually get done in a day! It helps to value the achievements of just getting through the day! They can be a big challenge for someone with ME and shouldn't be belittled.
When we manage this illness well, we can sometimes forget that we have these challenges and expecting too much of ourselves can gradually creep up on us again. It happenend to me this week too. I had to have a real good weep the other day, coming face to face with the loses caused by this illness once again!
I hope you can get to some of the things that you truly want to do soon! In the mean time, look after yourself!
What great advice! There is nothing I like better than crossing items off a list! lol
Seriously, you are totally right, and I know I need to change my perspective and recognize the small accomplishments of a life with chronic illness! Thanks for the perspective.
I'm curious- if/when you *were* able to do all the things on your to-do list, would you actually enjoy the process? I've learned over time that while I *think* I will reap some reward for getting a lot done, once I've conquered the to-do list, I don't feel nearly as satisfied as I thought I would. And then I go off and find even more to do!
When I got sick and had to scale back my activity, I started practicing mindfulness, enjoying the present moment. I gradually realized that what brings me the most joy is not x'ing things off a list, but sitting quietly listening to the birds, having a nice moment with family/friends, learning something new, etc. After a couple years of illness, I am presently back at 95% health, and again able to attack my to-do list like crazy. After first I did just that. But you know what? I let go of the list, at least mentally. I realized that it wasn't as "fun" or important as I thought it was, and that there are always far more things to do than I have I time for, even now as a much healthier person.
Of course I still have obligations, and I still write down to-do reminders, but now I am able to acknowledge that many of the items won't get done for a long time and *that's okay*. I ask for help more often, and I also learned to tell people "sorry, I don't have time for that." I'm often surprised when they don't question me. As a result, I spend more of my time doing the things that are truly important and satisfying. I'm not sure if I ever would have learned that if I hadn't gotten sick. In that sense, the illness was actually a gift.
You are so right, on all counts, and I have learned and done many of the same things as you since becoming ill. However, what I find frustrating are all the obligatory things that must be done that I can never seem to catch up on - those are the things I struggle with every day - the doctor's appts, school meetings, insurance claims, bills, etc - all the stuff that MUST be done and use up all of my limited energy, leaving none for the things I really WANT to do.
You don't mention whether you have a family, but I think that probably makes a big difference - our lives are ruled by our kids' needs and schedules, whether healthy or sick!
Thanks for the tips and the perspective - I appreciate it!!
Sue
Ah, yes- I don't have a family [yet], so I probably don't fully appreciate just how many things you _have_ to do. I guess like the other anonymous poster above, having a history of illness makes me terrified to have a family!! What if I relapse? But I'm a 31-year-old female, so the clock is ticking...
Yes, that would be a very difficult decision to make! My kids enrich my life in so many ways, but I got sick when I was 37 and my youngest child was 4. Even then, it was very tough taking care of an active preschooler being so sick.
Thanks Sue for sharing. We sound a lot alike. I have been fighting to understand what I have for many years and just this year I was told it is CFS/FM and positive for MTHFR, along with all the asundry symps. Sharing your experience is helping me to learn to be more accepting and learn how to deal with this 'illness'. Roxie
Interesting you said you had a cold.I wonder how long it will last. Do people with CFS struggle to shake off viruses? My son has CFS but luckily doesnt catch many colds (we put it down to his Vit C supplements) however he has been very poorly recently (for about 3 months) and he says it feels like a virus
Like most people with CFS, I rarely "catch" a cold but just being exposed to a virus can cause a severe CFS flare-up, the worst of which can last many months. Its because the immune dysfunction of CFS causes our immune systems to over-react (hence, the increased CFS symptoms) to viruses but under-react to bacterial infections. So, when I DO catch a cold and get congested, like happened last week, it almost always turns into a sinus infection or bronchitis that requires antibiotics.
CFS DOES feel like a virus because most of its symptoms are caused by our immune systems over-reacting, causing virus like symptoms (sore throat, flu-like achiness, feeling feverish even without a fever, etc.)
Treatments aimed at normalizing the immune system can help, such as Imunovir, low-dose naltrexone (search for these on my blog for more info).
Good luck - hope he feels better soon!
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