I try so hard to be positive and find the good in my life. I’m usually pretty good at it. Sometimes I just get pissed off.
Yesterday I slept while Hart went to lunch with friends. From 3 p.m. on, I sat in my corner on the couch. We had plans with friends for dinner. They came over, we ate pizza. I stayed on the couch.
Today I felt great when I woke up, then I showered and crashed. I slept while Hart went to lunch with friends. After they all left, I moved to the couch. I’ve had several swings of feeling better today. I get up each time, happy to have energy. I keep my activities light, but am always back on the couch within 10 minutes.
I don’t think I’m being lazy, which might be worse than doubting myself. This weekend I’ve seen that nothing I do will guarantee I’ll feel better. I work so hard to feel better. Whenever I feel like I’ve made progress, I’m knocked down again.
I’ll wake up tomorrow morning no longer angry. I’ll still know how easily I can be defeated.
I’d like to end this post with my usual upbeat twist. I can’t do it right now.
Monday morning: As usual, I cried it out with Hart last night and am much happier this morning. I also feel much better physically. Phew!
Carrie,one thing about reading the posts here, you always seem to find someone who has it as bad or worse than you. I don’t know what I would do if my headaches hadn’t gone away EVER in 4 years! Your strength amazes me. My headaches average 3-4 per week and that is depressing enough for me. I have to leave work or call in sometimes due to them and, I always feel like one more time and they will let me go and, then what will I do? You are lucky to have an understanding boss. My boss has known me for 20 years so, she tries but, she has never HAD a migraine and I know it is hard for those who haven’t had them to ever truly understand how we feel. She has seen me running for the bathroom to lose my lunch so, she knows I am not just trying to get out of work for the day but, still… (she even has had to drive me home when my vision was so messed up I was afraid to!) Now, when you have your headaches everyday, what do you take? Is there anything that really works for you? I have a hard time because none of the triptans work for me and they don’t like to give stronger meds. When I start getting really down about my situation, I come here and read so that, at least, I don’t feel so alone in this. It really helps.
I saw all your postings and was encouraged that I am not at all the only one out there that struggles with the pain. I have been diagnosed with Hemicrania Continua. It is a form of migraine that is one sided pain that is continuous and without relief. I’ve had it for 4 years. It never goes away and just fluctuates in severities all day long. Most times I feel there are so many asperations I have in life but so many limitations. I am working but not much. My supervisor knows about this issues and can no longer work me long days. If I could work longer days I think I’d do a good job at it. Because I am unable to do so, my husband is working two jobs. I am consumed with guilt at times due to this. I am however more involved with outside activity and social things like boxing,karate,and church groups. It’s hard for me to believe just a year ago I struggled managing the pain well enough to leave the house for 3 hours at a time. Some days are better than others as well as some times…..I never know! But I do have hope and know God put me here for a purpose even though I have this pain. It is at times a hopeless feeling and that I relate to as well. Unless you’ve been through it I don’t think others fully grasp the idea of how painful it truely is, ya know.
I totally understand your frustration, I have been going through a lot of it myself. I get migraines about 3-4 days a week and still have to make myself go to work. Triptans don’t work for me and neither do any of the preventatives. I take percocet when the pain is absolutely unbearable but, don’t like the way they make me feel other than the headache being gone. Now, on top of my own headaches, I am dealing with my daughters. She also doesn’t respond to triptans or any preventatives. She is fifteen and we have been going through this with her since age 13. I have been taking her to the headache clinic at Boston Children’s Hospital. We just finished trying Relpax, it didn’t work, so I called them and they told me to discontinue it. Now she has NOTHING for a rescue med and they told me when it is real bad go to the ER. They told me to take her for therapy (which I had already scheduled) and if that didn’t help after 2 months then the psychiatrist could prescribe something. I asked what to do in the mean time and the nurse said she didn’t know that the Dr. didn’t tell her that. I tried to explain that my daughter already is missing a ton of school and they are up my butt. (like the kid has a choice about these headaches…they run for generations in the women in my family). On top of that my 19 year old who started college this year used to have like one or two a month is now getting them more frequently. I feel so bad I am trying so hard to get them help for them. My youngest looked at me when I told her about the therapy and said great now the school will keep telling me they are all in my head.
I completely understand. I began having daily chronic tension headaches on January 6th and nothing is helping. I am 28 and no longer go out with friends, have trouble staying at work, going grocery shopping, showering etc. I’ve been to 7 neurologists, 2 neurosurgeons, accupuncture place, chiropractor, physical therapist etc. A doctor finally told me that he though DHE IV’s for four days would stop my headaches, but it did absolutely nothing. I am so hopeless right now and just want my life back!
Kerrie – I could have written just this same post… especially lately. I am pushing myself so hard to focus on the good and reach for alternate means of treatment but lately, I cannot get out of my funk.
I’m thinking of you. Be well.
Hi Kerrie,
Oh how many times do I hear this! I just want you to know that many headache sufferers do feel angry and frustrated by their condition…I wish there was a “magic pill” (don’t we all?) that I could send by email to make you better.
I hope you are having more good days than bad at this point. From the posts it looks as if others are in the same boat.
Hang in there..headaches do tend to decrease/dissapear with age (Ha! you say.) and I am one of the lucky ones that happened to..
Take care.
Kerrie,
I am so sorry – I totally understand, I too have been having daily, chronic migraines the last several months. I feel guilty talking about it with friends & family. I work from home for a large company and sometimes and sometimes productivy suffers but sometimes I have good hours and can accomplish stuff. But quality of life is just in the toilet. It is hard to imagine that I won’t get better. I had a Kenalog shot (steroids) beginning of February and a round of steroid pills but it did nothing for me. I’m so depressed. Thank you so much for your blog – it is comforting to know that there are others out there like me. I hope that you have some good days soon. Big comforting hugs to you.
Kerrie, I hope you are feeling better now.
Sorry for your rough time. Thank you though for posting about it – it does help so many of us to know we aren’t alone and to also realize that on days that I feel really bad, someone out there probably feels even worse. Thank you for your courage to keep going.
Hope you get some pain free time soon!
sometimes i don’t even feel like myself, its like i am not even a human being, i am a walking, talking, sitting migraine. i am no longer a wife, a daughter, a friend, or a person, i am just a migraine. i feel hopeless, worthless, and useless. i sometimes can’t even walk my dogs, clean the dishes or cook food for my already overworked husband. why am i even here? then, when i do have a good day, i look at the sky and see that i still have air in my lungs and we all have reasons to be here. to do Gods will and praise him. Even under trials.
It’s completely unfair. I’m glad you own your anger about it. As I hope you know, you are SO entitled to do so.
That last comment took me so long to type that you’re feeling better!;)
I’m so sorry you’re in this valley. I know it doesn’t make the pain, or this moment of anger any LESS but I want you to know I understand, if only a little (I’ve only been dealing with daily head pain for 7 mos.). And if you did wake up this morning no longer angry, then kudos to you for such a quick turnaround!
I think one of the most frustrating things in my life is that I actually have to work at feeling better. Get enough sleep, try this medication, monitor how I’m doing, don’t eat this, take a walk, do my stretching, get a trigger point massage to help with the knots in my neck (which never really go away). The list is endless. And, like you, there are still so many times when none of it works, and I’m sitting around the house feeling like crap, unable to do NORMAL things like go shopping or visit with my 5-year old nephew. It gets really, really old, and you can’t be upbeat all the time.
Kerrie,
You’re not alone. I feel the same way when I get migraine after migraine after migraine and my whole world revolves around them. For me, migraines are not just the actual event (aura, nausea, pain) they are also the days before when I can’t concentrate due to mania and anxiety and the days after when I cry and feel tired and depressed. I am also fearful of going out of the house (what if I get a migraine in town? How will I get home?).
You’re doing the right thing by sharing how you feel with everyone. You help others feel ok about themselves and you’re also finding more solutions to your problems by telling the world what you have tried.
Migraines are so complex that there is always something to try and if not something to try, some other weird, related symptom to research. You never know when a solution (however temporary) might come along!
Hang in there girl!!
Dusty
Forget the upbeat. I’ve been doing the headache thing for 17 years in April. Upbeat is for the benefit of others. You have to take care of you, worry about you, get what you need. THEN you can take care of others.
Seriously, chronic pain is a ball-buster. There is no way you can feel this bad all the time and not get angry. Heck, that is even healthy. It means you haven’t given up. It means you still have the energy to feel something. It means you aren’t completely lost to the depression that is often the result of chronic pain.
Hang in there. As always, this too will pass.
I understand. Some days getting a shower is major accomplishment.