When writer Anne Lamott’s brother said his wife was near death, she desperately wanted to go visit and be there for her family, but was momentarily physically and emotionally disheveled from her own life stuff. She called a friend who said, “Dearest, you do not have what John and Connie need. You don’t have it to give, because you are kind of crazy, and depleted. What if you got centered, and sane and full, through rest, and friends and hikes? Then you will know what to do, and when.”
“You do not have it to give.” I spent years trying to give to others what I didn’t have to give. I wanted to, very much, so I kept trying, despite being completely depleted by chronic migraine. I was never satisfied with what I gave. I wasn’t present enough, wasn’t caring enough, couldn’t follow-through when I wanted to. I was physically incapable of providing the support I wanted to give. But instead of recognizing my limitations, I kept on pretending I was OK. I wasn’t satisfied, nor were my loved ones. They knew I wasn’t really there, they knew I probably wouldn’t keep my promises. I hated this.
When I finally got that I couldn’t give away what I didn’t have, I withdrew. I knew that I had to get “centered and sane and full” before I could really be there for others. Sounds wise, except that I was so sick and wrecked that I withdrew for years. I’m still withdrawn, still focusing so much on how I feel and taking care of myself that I’m not as engaged with my loved ones as I want to be. I hate this, too.
But it’s what I have to do. I am better – so much better than I was – but I continue to have migraine attacks more days than not. I can now stop some migraine attacks with medication, but I still lose at least few hours each time one comes. And sometimes two or three come in a day.
I am over the moon over how much better I am because the relative improvement in my life is so large, but I’m still quite sick. My version of feeling good has far more pain, fatigue and brain fog than a healthy person’s definition. I’ve adapted to that and am (mostly) OK with it, but it causes a lot of hurt and confusion for my loved ones. If I’m doing so well, why am I not calling on a regular basis? It’s because doing “well” takes an unbelievable amount of physical, mental and emotional energy. That’s so hard to wrap my own mind around that I can hardly expect people who don’t live with me to do so.
Even on great days, my pain reaches a level the comparative pain scale describes as “very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you a shot.” That’s just pain, it doesn’t account for all the other symptoms of migraine, the most prominent of which are, for me, fatigue, brain fog and nausea. I have to consult with migraine before I do anything. I have to attend to all the same things of life that everyone deals with on a highly compressed and unpredictable time schedule. I can go from feeling great to laid up in less than 15 minutes. Despite planning nearly every day to call someone after I get the absolute necessities of life taken care of, I’m rarely able to make the call. By the time I get there, I have nothing left to give.
Getting rested and centered and full before giving to others may make a person most available to their loved ones, but what if you never get there? Where’s the balance between taking care of yourself and being there for the people who are important to you? I’ve gone from one extreme of the continuum to the other and am now trying to move myself more toward the center. I can’t figure out how to do it in a way that doesn’t compromise my own well-being.
My headache specialists agrees with you that not enough is known about genetics yet. When I mentioned that I heard that some genes can be turned on and off, he did agree with that which surprised me. I am so thankful for your warning that one of the supplements caused depression because I do keep getting that side effect from some medications so I will definitely try to be aware of that. You take care, too~
Posting again so I can click the “notify me when new comments are added”.
I can so relate. My good days are still what would keep a normal person in bed. I’m leery of telling people when I am feeling a little bit better because they assume I am all better and assume that my pain is gone. Really it just means I am able to drive to the store to buy much needed groceries, maybe make a phone call to schedule a doctor appt. (that I have put off for weeks), etc. I appreciate your blog. I’ve been away for months, struggling. I feel like we are on the same path. You are the one that first mentioned excess histamine & mast cell disease. I’ve been pursuing that route all year…slowly and not making much progress. Like you, my safe food list is dwindling and I am not sure what to do about it. Have you thought about seeing one of the mast cell experts? I guess there are about four in the U.S. that people talk about. I haven’t come to the point where I am wanting to spend that kind of money yet. Still doing tests locally. I was also wondering….with your ‘quack’ doctor experience……you mentioned that she wanted to run tests that give lots and lots of information. Is that genetic testing, by chance? That’s been my latest endeavor. I used 23andme so it was not expensive. I have an online friend that is trying to help me figure out what I need to do to work on fixing some of my “fixable mutations” like the MTHFR gene. And that is about all I know. Just wanted to get caught up with you.
Traci, I really identify with what you describe feeling a little bit better is really like. So true and so hard to understand for someone who has never been relegated to bed.
I saw a mast cell specialist last January. He wasn’t one of the heralded experts, but knows a lot about the disorder. He did some tests and I came away convinced that I do not have a mast cell disorder, just that histamine is a major trigger for me. If migraine is the only symptom, like it is for me, the chance of a mast cell disorder is infinitesimal.
The tests from the bad doc were not genetic testing. I had that done last year and have come to believe that not enough is known about genetics to treat specific disorders or even most mutations. My results were interesting, but nothing has been particularly helpful. There was even some harm — I have the MTHFR mutation. I took methylfolate for it, which triggered a pretty intense depression. This is a very rare occurrence, but one to be aware of. One of the Migraine.com writers took it with some success (http://migraine.com/blog/mthfr-genetic-mutation-affecting-migraine-treatment/).
What I have found helpful in the last couple months is a probiotic. It is still too early to know how helpful, but it has enabled me to eat some foods that I was starting to develop reactions to. I take TherBiotic Complete. I started on one, then went to two last week. I noticed slight improvements in my food reactions with both increases. I jumped to six this week and haven’t yet noticed an improvement, but the last two have taken a few days to make a difference. I’m switching to VSL#3 soon, which has most of the same bacteria, but is stronger per dose.
It’s good to see you keep plugging away. I know how frustrating it can be, but also believe it will ultimately be rewarding. I wish you the best.
Take care,
Kerrei
Shelby, re: one of your comment – I am forever surprised by people who know how sick I’ve been, and how long it’s been going on; who say to me “really?? – I thought that was OVER”, because the last time we spoke I said I was feeling “pretty good” that day.
OR — I say I’m having a “good day”, and my boyfriend says “great! Well hey! You wanna go HIKING?”
I can’t begin to count how many times I’ve explained to these very people what it means when I say that; – how RELATIVE it is compared to “good day” for them.
Sometimes it feels like they DON’T need more explanation. It feels more like they are challenging me, – like a touch of disbelief is creeping in, perhaps stemming from their own stress with my illness.
I understand that my illness can be stressful for others, not only for me, but I’d rather discuss it directly than deal with back-door comments.
Kerrie’s post reminds me that I DO work hard to be gentle with my loved ones, direct about my illness, and empathic about how it is hard for THEM too. I’m not perfect, but I do work hard at these things. But sometimes I’m doing all that work and it isn’t helping; and that great word, DEPLETED, so validating in its perfect description, reminds me that I can only do what I can do. Sometimes I have to take care of myself, and let the rest of the chips fall where they may, letting go of what others believe.
Kate, it seems like a never-ending process — not just the illness, but managing other people’s expectations and hopes. I’m glad you’re taking care of yourself.
Kerrie
Yes! I am such an independent person at heart and even days without a migraine seem to be spent recovering from one (the fatigue mostly) Then on the days where I actually feel good, sometimes I get so excited that I overdo it and want to see everybody and do everything, which causes me another migraine cycle. It’s hard to live with the fact that I can’t do everything I want to.
Michelle, I totally agree! Thanks for sharing your experience.
Take care,
Kerrie
I cry everytime I read this because it is so spot on. My friends, my family, my boyfriend, its like no one understands. I feel like i can’t even explain how I feel to them because my brain fog is so terrible. I am only 20 and have been chronic for two years and this is just the start of my life and I’m having such a hard time realizing my life NEVER be the same. My life is litterally taken hostage by migraines. Sometimes I don’t know if my body can take much more. I hope I reach a good point soon. Your blog really helps.
Shelby, I’m sorry you’re going through such a difficult time and at such a young age. Please remember that most people with chronic migraine revert to episodic. It takes a little longer for some to find the right treatment for them than it does others, but the chances are good you will not always have chronic migraine. I know how exhausting and overwhelming it can be, but hang in there and keeping searching for relief. I wish you all the best.
Take care,
Kerrie
Your posts are all so great, it’s like you are in my head! Couple thoughts after reading this:
-I have this voice in my head that is constantly saying to me “I have nothing more to give” and this feeling that I am crawling to the finish line (the door to my house) at the end of the work day. I feel like I give so much and I put so much energy into acting as normal as I can that I just further deplete myself.
-You mentioned checking in your Migraine. I almost feel like, yes, my Chronic Migraine is another significant relationship in my life that I have to maintain. It requires attention and care, time and commitment. But wait… where’s the upside in this relationship 🙂
-You mentioned going from feeling great to laid up in less than 15 mins. Thank you! Sometimes I feel like my boyfriend must get so confused by me. We put together a plan and then by the time we execute to go do something, my world has completely shifted. It doesn’t seem like that could happen, but it does.
Thanks again for all you share. Hope you are having an OK day!
Thank you for finding the strength to even write and post, especially on this particular topic! You have certainly had to have helped many of us who suffer from a migraine or general pain ….constantly as we send this to our loved ones who simply don’t understand. Many of us have nobody left in our life to call should we need to reach out due to the “no shows” we spent half a day in attempt to “get it together” only to find ourselves 110% spent, in beyond pain, and lying in bed (on the floor or where ever it is our bodies collapse). They don’t understand how a simple phone call can’t possibly be made to ‘catch up’ or ‘visit’ and they certainly don’t want to hear of all of our ailments Every.Single.Call. If we are unwell, how can we possibly be of any use to anyone else? The simple thought of making an effort – much less actually making the effort would make us worse no doubt! Blessings to you and all who suffer! (We certainly can’t have enough of them!)
I posted on this topic recently, how we have to take care of ourselves first. There’s a reason they tell you to put on your own oxygen mask first in the event of a pressure emergency. Life is full of pressure emergencies and if we don’t put on our own oxygen mask we will not be able to provide any help to others, in fact we may do them more harm by trying to help.
Well put. This resonates so much with where I am in my journey. I have tried to balance work, social time and migraine for far too long. Lately I find I have “run out” of energy to push through or pretend.
I am working with my healthcare providers to move forward with FMLA and/or short-term disability. Surprisingly even my inner critic does not have enough energy to do its job (negative, guilt provoking) of a nasty internal narrative.
It was a pleasure to read your post!
I understand this so perfectly. And the guilt…oy.
Again thank-you for hitting the nail on the head (pun intended). I forwarded to family and friends along with a thank-you to them for their understanding and support. It helped to give myself permission to take care of myself first. Peace, Toni
These lines are so true – “I have to consult with migraine before I do anything. I have to attend to all the same things of life that everyone deals with on a highly compressed and unpredictable time schedule. I can go from feeling great to laid up in less than 15 minutes.”
& “You do not have it to give.”
Being so withdrawn and disheartened by people’s unkind comments and feelings, I needed to hear that there are fellow migraneurs out there who experience the same! While I feel sorry for your pain, I take comfort that I am not alone in this treacherous journey. Thank you so much for this thoughtful post.
What a poignant blog post. There are so many things I’d like to do to be a better friend/family member. I live w/ a constant list of “should haves.” However, I truly try to believe that those who love me the way I do them understand my situation & accept this is the new me.
I relate to this so much. I have to consult with Chronic Migraine first as well before I do anything. The answer is almost always no. Thank you for writing about our lives. A life only Chronic Migraineurs know. For me if it’s not a full blown Migraine with aura, it’s the endless fatigue during the time between Migraines.
Kristine, I’m sorry you know this life. The fatigue slays me, too. I recently read that fatigue is much more common i among people with chronic migraine than episodic. It’s like our bodies get so worn down during migraine attacks and never have time to catch up.
Take care,
Kerrie