At Christmas-time, Hart and I made plans to see friends from Montana who were visiting family in a Phoenix suburb. I offered to make the 30-minute drive to where they were staying so their kids could sleep while we talked. They got a babysitter and came to our house instead. I thanked them, saying that since I didn’t have to go anywhere, I was able to take a shower. They laughed, assuming I was joking. These are close friends who know I’m quite ill and their laughter showed me that no one other than Hart really knows the affect migraine has on my day-to-day life.
This has been a typical bad week. The migraines haven’t been horrendously painful, but the conglomeration of symptoms, particularly fatigue and nausea, has really drug me down. (I should interject to say that by “not horrendously painful” I mean that the pain hasn’t exceeded a level 7 on a scale of 1 to 10 — I forget that my perception of pain is skewed.) It was the perfect opportunity to catalog my activities to show what my days are like. I’m now trying to figure out how to share them with you in a way that isn’t tragically boring.
Tuesday
I stayed in bed reading news on my phone for two hours after I awoke. I usually feel worse after I get out of bed, so I like to linger if I feel OK so I can savor it. I used to plan my days while still in bed, but I stopped after noticing that the plans usually collapse because I usually feel so much worse within 15 minutes of getting up.I felt well enough when I got up to shower, which has been unusual the last eight weeks.Showering often depletes my energy and Tuesday was no exception. It took two hours of playing Words With Friends and mucking about on my phone to gather enough strength to go out for a few groceries.
When I got home, I was grumpy, weak and very spacy, all indications of an impending migraine. I took a Maxalt melt and a Zofran and watched an episode of Dr. Who while the drugs went to work. Afterward, I was able to clean up some veggies and roast them for roasted vegetable stock. That was it for my energy, though, and I was in bed by 9 p.m.
Wednesday
I had an 11 a.m. appointment, so I set the alarm for 9:30, knowing how slow mornings can be. It took an hour for me to get up, dress (in the previous day’s clothes) and put in my contacts, during which time I had Hart cancel my appointment because the migraine was too bad. I had to sit down several times while getting dressed, then crawled to the door so I could grip the frame to pull myself up. I walked the 10 steps to the bathroom and sat on the floor to rest before putting in my contacts.I spent most of the day watching Dr. Who, though I got up and walked around after every episode to see if I felt well enough to do something. By 5:30 p.m. I was able to pile the roasted veggies in a pot and fill it with water to make the stock, but I was trembling so violently that I had to lean on the counter to hold myself up. Severe trembling is another sign that I’m in the early stages of a migraine, so I took an Amerge, pushed through what I needed to do in the kitchen and watched another Dr. Who. It halted the migraine pain, but I never did regain enough energy to do anything else.
Also, I was too cognitively impaired all day to be able to play Words With Friends, which has become a source of pleasure and connection for me.
Thursday
I felt good enough that I thought I’d be able to take a shower and not have to wait for a recovery period. Nope, the shower wore me out and another migraine hit. More Dr. Who while I waited for the Maxalt and Zofran to work. They did, though not in time for me to make it to my dental appointment.I napped and by 3 p.m. was in good enough shape to drive myself to Whole Foods. Not only that, I started chicken stock on the stove while I sent some emails that I’d been too sick to deal with, and heated up dinner to eat with Hart. We ate, then I cooked some more and cleaned the kitchen. And, for the last hour, I’ve been writing this post. This qualifies as a good day.
I noticed when I got into bed that my entire head, including the roof of my mouth, was pounding. Four hours and two Midrin later, I was finally able to go to sleep.
I am not a lazy person. Chronic migraine is not an excuse for me to be a couch potato. I am forever asking my body to allow me do more than it wants to do and take advantage of nearly every decent moment I get. Knowing how little I accomplish even though I try so hard is disheartening. Acknowledging how long it takes to get out of bed or the devastation a shower unsettles me.
Simultaneously, I am proud that I make the most of my limited life. The smallest achievements are exciting and I enjoy every task, even cleaning the toilet, because I’m thrilled to be able to do them. I never know how long a good spell will last, so I don’t take any of it for granted. Carpe diem is my motto because it has to be. If I didn’t seize the day, I’d likely wither away.
A friend recently told me that my day-to-day life seems pretty awful. Compared with a normal life — and with the grand, world-changing life I expected to live — it is. But these are the circumstance that I have to work with and I’m growing accustomed to the limitations. I get angry and frustrated at times, but I also revel in the joy of a perfectly crafted chicken broth, indulge in the wonderful fiction of audiobooks and television series, and appreciate when I’m able to write something that helps others with chronic daily headache or migraine. Considering how small my life appears on the outside, I feel like I live pretty large.
I am new to the migraine nightmare. It’s (only) been 6 months now. Daily migraine that has me wishing to die each time. It feels like for ever but when I read stories of people like you guys who’s been struggling for years. I just makes me wanna kill myself (cauz I don’t even think I can take one more day), but also I highly admire the courage that makes you wake up every day. I wish I had even a week pain free. But all I had in 6 months was a 3 day break where the pain was like 5 on a 1-10 scale and to me, it was GREAT. It all started while I was pregnant of my 2nd child and I am not even going to try to explain you what it feels like to manage migraine attacks and a 2yr old plus a 5 month old. I’m empty. I can’t pray anymore, I just wanna find the door out of life. I hate that my kids have to witness me crying, screaming and trying to pull my hair out in pain…
Romie, I’m sorry you’re going through so much, especially with such young children. Please don’t despair — you’re fortunate to have a diagnosis relatively early on, something many of us with chronic migraine don’t get until years into being chronic, do don’t let our stories scare you. You have many good treatment options available to you! The most important thing is to find a headache specialist (not just a neurologist as they have minimal training in migraine and headache disorders) and find out both about preventive medications (to reduce the frequency of migraine attacks) and abortives (to stop or reduce the severity once a migraine attack comes on). There are effective prescription medications as well as supplements and some people benefit from alternative treatments like acupuncture.
To find a specialist:
http://www.migraineresearchfoundation.org/pdf/Diplomates%20May%202013.pdf
http://www.headaches.org/physicians
An excellent write-up of why it is important to see a headache specialist and how they can help you: https://migraine.com/blog/how-are-migraine-specialists-different/
It amazing to feel I am by alone in my inability to have a shower without at least half an hour sitting or lying down afterwards. It’s such an effort and I thought this was unusual for anyone who wasn’t just lazy. My question is though; how do you feel like you are achieving things when everyone around you makes you feel like you are just being lazy. My partner knows how bad my headache is (persistent migraine for past 2 and a half years) and associated symptoms, but he still sighs when he gets back from work and all I’ve done is had a shower. Just because I look like there’s nothing wrong. How is it when the people who know the most and are closest to you still don’t understand and still make you feel like you’re a lazy failure?? How do you deal with that?
This sounds like my recent 5 day stretch I’m just coming out of. I take the meds, recover enough to stand up and go to the bathroom, see if I can get something to eat…then decide NO, it’s not happening and the migraine comes back full force. Vomiting, shaking, trying to pass out, so tired, disoriented, not able to convey what I’m trying to say. I am fortunate the Topamax has helped the frequency of my migraines. I was having chronic daily ones that lasted for months. Now I get them less often but still the same intensity, or worse. It’s unfortunate the time spent in bed so sick…
The way you describe how these headaches are running your life is exactly what I have been experiencing. I went out on TDI for 6 months because of my headaches, then I decided I wasn’t going to sit back and let them run my life. I asked my Dr. to let me return to work and she hesitantly gave me permission. The first few months were an amazing struggle. I had a hard time concentrating and the sound of people talking in the office made the headache much worse. Nevertheless I came to work everyday and tried my best to manage the pain, while meeting my responsibilities. My doctor had me start coming in to her office everyday after work for fluids and iv pain meds, in addition to imitrex. That has been my routine ever since. I spend the day at work fighting off the pain, then go to the doctor’s office where I get a little relief, and I do mean a little. My headache has been going on for about 4 months now. I keep hoping it will stop soon, but every time I talk to the doctor I see her hope fading too. Some days I struggle to act like a normal human being because the pain makes me impatient and irritable, and minor tasks have turned in to big jobs. I appreciate all the posts and suggestions on this site and will continue trying to find something that will help me get back in to a happy, normal routine.
My 17 year old daughter has recently finished treatment for leukemia and is in remission, thank God right? Well all through treatment she suffered severe headaches and now is still having migraine headaches this time it’s been 3 weeks since she has been to school senior year. cant possibly concentrate on homework . She has tried many preventative meds that didnt work weaning her off topomax now. she takes tylenol 4 2tabs as needed or vicodan as needed and sometime fiorocet. that is her daily diet narcotics! I feel so bad for her she was looking forward to catching up on school and life after treatment and now this its terrible I feel for all of you! does anyone have any suggestions? is she just going to have to keep taking these dangerous drugs! I hate the fact my daughter is broke and I cant fix her. but i will always love and care for her. and she too is Incredibly Blessed to be alive! keep your posts coming I’m going to show her this site.
I was in a plane crash, in 1994, messed up a bunch of stuff. Prior to that, horse training, and just general active lifestyle. I had as a young teen, periodic migraines, but now, and for literally the last 15 years plus, it is daily to some degree. The meds sure help, but, I still feel worthless since can DO anything. It is so nice to read, in this blog of others and how you all deal. I am known in our family as the positive one, as I will always find at least one positive thing no matter what. But, the constant battle to be, is indeed wearing. I am tired of hurting, I am tired of getting sick, I AM SO INCREDIBLY BLESSED TO BE ALIVE! Thank you everyone for sharing, Kim
After doing some research for my mom’s migraine I came across your blog yet again. I feel very sorry for you. I can’t find words how to express myself.
I just hope someday you will find a solution.
My mom has tried acupuncture but it really didn’t seem to help much. At this point she also doesn’t feel like trying anything else (new).
I noticed that it seems like you take a fair amount of triptans. I was doing same for awhile. And the headacheds just kept getting worse/more frequent, although the triptans would quickly take them away.
After I stopped taking them completely (and caffeine at the same time) after about a week or two I found that my headaches stopped.
You probably have already tried this and I know everyone is different, but I just thought I’d put in my two cents, since I found your blog while in the middle of the vicious triptan headache cycle (about a year 1/2 in total).
PLEASE listen to my story. I’m a 48 year old male from South Africa. I’ve been suffering from intense daily headaches for the last five years. Have an excellent medical plan I’ve been to the best neurologists, general practitioners, specialized practitioners, acupuncturist, brain surgeon, physiotherapist, had numerous blood tests, 3 MRI brain scans and they couldn’t find the reason for my headaches/migraines. I started the day with them and ended the day with them – every day. Even my medication of 75mg of tripelene didn’t help in the least. All the doctors advised me not to regularly take over the counter drugs as this would affect my internal organs in the long run.
This was no life at all. I felt I had used up any chance of finding at least a little comfort in life. Only one who has suffered and felt the intense pain the cripples your life will know exactly what I’m writing about. I had out Googled myself looking for some hidden treasure that would help.
Here it is. I found a site where an American doctor said that some of his client who came in for Botox treatment also discovered that their headaches disappeared! I did further research and found a few sights that claimed the same thing. Straight away I booked an appointment with a plastic surgeon. On the first visit he discussed what he was going to do – this after maintaining that ALL other avenues of prescribed treatment had been taken first and that this was not guaranteed. Second appointment he injected a whole vial Botox into my facial muscles and neck muscles. Saying that he was going deeper than normal cosmetic Botox treatment. By the second day I felt NO pain whatsoever. It was like a new door of my life has been opened. I may have to go back every 6 months for a reapplication – who cares – I’d go back every week if needed. (My medical aid after refusing to pay for this treatment has now agreed to pay.)
Thanks for this post, and for all of your others. As a daily chronic migraine sufferer who lived in denial for years and is finally listening to my body, my days look very similar to yours. It’s very comforting to see I’m not alone in this.
I still struggle with the feeling that I’m “lazy,” or “anti-social”, as I have at other times led a very outwardly active life. One thing I miss terribly is not being able to be as physically active as I was as a former marathon runner. However, I’ve come to think it’s a matter of seeing our lives as active in their own way, and busy to an extent that we can cope with.
Oh, and yeah, I dread showers, too! A life-saver for me is dry shampoo, since it at least saves me from having to wet, wash, and style my hair each time 😉
Looks like your work is paying off. We all (based on comments) can relate. Thank you for putting it in words. So many times when I’m suffering, I think of how I would like to get everything down on paper and share it but don’t have the energy or tolerance to do it. Some of my best and most creative thoughts come around my 6-7 pain levels. I applaud you for getting the strength and courage to make this happen. Keep writing.
Yolande – Pain behind the right eye is a definite for me.
It’s so good to have a support network that includes other people who have to gather the energy to shower. Today is not going to be one of those days for me – “No Shower For You!” But I really appreciate the point of your post. It’s good to remember the big picture… it’s not just about the dishes in the sink, it’s about what we CAN do and most of all, who we love (including ourselves). xo Thanks!
Wow! You really hit the nail on the head (no pun intended). My family laughs at my to do list which actually names “shower” as an item. I consider it a worthy item since it often takes so much effort. For the past 10 years I have searched and taken everything possible, including the new botox treatments, none worked until I finally found a doc who prescribed oxycontin (low dose of 20 mg twice a day). I know I am addicted but it has been a miracle for me. I ran out 3 days early this month and neither the imitrex nor ibuprofin worked. I finally got my refill today and am back to being pain-free. I am so grateful to this doctor who truly saw the severity of my pain and helped me to get rid of it. No doctors before would prescribe any narcotics. I hope you can find someone to help you. My life was in ruins until this prescription. Keep fighting to find someone to work with you until your pain is gone. Best of luck. I am in the Atlanta area and can give you his office and name if you would like.
I am literally in tears. I understood at an abstract level that you suffer to this extent, but reading these detailed moments deepened my awareness. One gift this illness gives you is the present moment, which most people (myself included, much of the time) have trouble grasping. It reads loud and clear in your post that this gift is well-spent on you. Brava, Kerrie. You rock.
Does any one get a pain behind the eye? It feels like a hot poker
This is a carbon copy of how my life has become, but with the added feature of vertigo as I have chronic, complicated and basilar migraine. It’s like having a constant virus in terms of how it effects your energy levels, even on the good days, of which there are too few.
Thanks for your great blog, it’s nice to know I’m not alone and also good that you focus on the achievements of each day. I now make myself small task lists each week, ticking off items as I go. There’s no penalty to not ticking them off in the week, but eventually they all get done and it feels good. It gives me some sense of achievement and structure to those ‘better’ days.
I was posted an article about your blog from a Canadian newspaper just a month or so ago. News travels!
You really hit the nail on the head. It’s depressing to have such a limited life as a chronic migraineur, but at the same time, it makes us stronger to know we are making the most of it. Thank you for your great posts.
– from That M Word: A Migraine Blog (thatmword.com)
I was just thinking today–showers are exhausting! Thank you for this post.