Having a chronic and debilitating but non-life-threatening illness is frustrating and at times humiliating. For me, it's migraines and chronic fatigue.
I've been to every kind of doctor, both traditional and alternative for years. I've tried every treatment available to rid me of this disorder to no avail.
I remember life before migraines loomed so large in my life, and I really miss it. I miss feeling comfortable enough for a car ride, or having the energy and good spirits to visit a friend or have a friend over.
Most of all, I really dislike how so many people simply don't understand how this chronic condition hampers me so much.
When the migraines first started, they came infrequently, and didn't affect my life very much. However now that they are an almost daily occurrence, it affects everything in my life.
I'm hesitant to make any firm plans with friends or family, because I've had to cancel out so many times. This is frustrating for those members of friends and family, but I too am frustrated.
Of course, many people who do not have migraines think of them as simply really bad headaches. They have no idea that it's a full body experience. There's not only the head pain, but there are visual disturbances, and vertigo sometimes verging on dizziness, and oh, the nausea.
If it were just a bad headache, believe me, I'd be delighted! It's the attendant discomfort that really gets to me. It's hard to even contemplate going for a car ride when I already feel more than carsick.
The worst though is when people who are close to me start to believe that it's "all in my head", or that I'm faking it to get out of a function or a get-together.
I can tell you that this is not the case. Yet I've lost friends over it. That I understand. It's hard to be friends with someone you can't count on. What has hurt me is having family members who refuse to understand my state and are judging me.
I honestly try to start out each day with a positive outlook, and I try to be as cheerful as I can be, but sometimes, it's just not easy.
And then there's the guilt. I would love to be able to do more, not only around the house, but out and about in the world. Some days, I just can't do certain things and even though I know that I can only do what I am able to do, guilt creeps in.
Also, there is the guilt of knowing that there are so many people who are fighting life-threatening conditions, yet seem to be more active than I am.
I know that many of you who read this are living with some debilitating chronic conditions. I wonder if any of you experience the same thoughts feelings or frustrations.
If you've read this far, thank you. I just needed to get some of those thoughts off my chest. I am not looking for sympathy from anyone. I would like a bit of understanding though.
'Til tomorrow, my friends. Much love to all.
Where I've Been and Where I Am
3 years ago
You have my genuine sympathy, Franny. I have two "very close" friends who suffer from migraines, so I completely "get it." In my entire life I have suffered only one migraine headache, and to this day I will never forget how agonizing the experience was, never. I'm glad you were able to come here tonight and get some of your thoughts off of your chest. Lulu
ReplyDeleteMy goodness, but do I ever understand every last word. I get migraines myself, though not nearly as often as I used to when I was younger. I couldn't read or be on the computer or do anything but lie in bed and whimper, or hang over the toilet bowl puking and crying. But I deal with the constant fatigue and constantly sore and hurting body. I can't do much either any more and it drives me mad and makes me think of myself as a malingerer. A faker. Yet the limitations continue and I hate myself.
ReplyDeleteI understand about the migraines. I got them about once per month for a couple years while I was going through puberty. I got the aura, nausea, and dizziness. I understand how debilitating they are; I couldn't even watch TV when I got one due to my body's extreme sensitivity to light and sound.
ReplyDeleteNo one understood how bad they were. Once, I went to the nurse with one and asked to be sent home. She basically accused me of faking it and told me to go back to class. I came back forty minutes later, having puked all over my desk. Showed her!
Perhaps sometimes, people with life-threatening illnesses go out into the world and do things because they understand that their time might be running out, as sad as that sounds.
I think I've mentioned that I'm diagnosed with Chronic Daily Headaches and Migraines. I basically have a low grade migraine daily. I've found some coping skills that work for me but might not work for other people. No, people don't understand. I'm lucky I guess that I have such a good support system but I've gotten to where I try not to talk about it as much as I use to but it's hard when you hurt so bad to not let a , "Oh my gosh my head!" out every once in awhile. Missing out on life and scheduling activities sucks too. I've learned that if there is a big event then I can "plan" for it. I won't go into it. But, that might mean missing something else. I have felt very guilty about housework, work (yes, I work part time still), relationship with SS and DH and how all of that has suffered. So, I think I get ya.
ReplyDeleteDan Millman has a quote that I love about pain that changed my outlook a bit and so did my husband. Again, my pain level might be a lot less then yours. But, one day he said to me- you can either hurt here at home or out there with me. I started trying to live again even with the pain. Again, pain is subjective. Hang in there. Some of us get it.
Light and love! I don't know if you can email me or contact me but feel free if you ever want to talk about it.
That is so hard! Especially because society judges people. It's like, if we can't see something wrong with you, then you must be imagining it. I'm sorry you have to deal with that.
ReplyDeleteYou have a great attitude in spite of what you have to suffer. My husband used to suffer from migraines when he was younger. Now he has chronic pain in his neck. I have constant pain in my feet but nothing like what you have to go through.
ReplyDeleteFranny,I have chronic migraines,so I understand what you're going through.I went to see a Neurologist and she put me on Lamictal,and it has helped tremendously.But,now I have sciatica to deal with,and it just upsets me.I hope you can find something to help you :).
ReplyDelete