There are times when living with Migraine, Cluster, or other headache disorders feels like hell. Everything goes wrong and it feels like our misery will last forever. How might we encourage each other to keep going when all hope seems lost?
Migraine Awareness blog challenge day 25
There is a saying “When you’re going through hell keep going”
I am in a level of hell right now. I have had daily migraines for well over a decade. I have these constant, disturbing, vestibular symptoms that are severely impairing functionality. It is 90% hell and 10% hope. I have other pain conditions and mental illness.
But, it isn’t the hell that almost killed me. I caution people with pain, a lot, when they are in survival mode and in deep despair… it is dangerous. And sometimes that depression we think, surely, must be normal for pain is actually Major Depressive Disorder. And when the pain is high, for days on end, you add in depression and it is life-threatening. And you brush off suicidal ideation because that, too, must be normal for intense pain. But not that often. And not when you are on the cusp of action more than once. Back then, I lost count of all the days I saved myself from myself with various tricks to get through that horrific despair. So close to the line. And then I went over the line. That line between thought and action, but I survived it. And now I know how very tempting and easy it is.
I do have depression medication now. Abilify. Antidepressants are quite literally part of my problem. I was on them for migraines but they made me massively suicidal. Amped up the depression.
The thing about survival mode where you are crawling through life inch by inch to survive that moment of pain… that is infinite… is that it isn’t sustainable. It is torture. And the fact that resulted in a deep, dark, suffocating depression doesn’t astonish me.
If you are in the hell that is survival mode, long term, it is dangerous and it must be addressed. And if you find your depression is unrelenting, that too must be addressed. They are the perfect storm.
I can say that working full-time and constantly pushing through the pain, that only got worse by the pushing through process… was unsustainable to me. And even though it was impossible, I did it anyway. And I got worse. And the depression came on. I was in denial. And I was just trying to survive… till that potential treatment came along… which never did.
So my advice for that level of hell?
- Please do not push through the pain to try and ‘function’. Yes, we have levels of functionality with pain. But if you are Always pushing through and the pain is far more on the really high side, then this is a sign you need new limits. And to pace. Fibromyalgia taught me a lot of about pacing, and it applies to migraines as well. Pain is extremely draining mentally, emotionally, and physically. We need rest. We need self-care, and we need to pace our days.
- If you find your level of work unsustainable try to find ways to improve that situation. I have had a hard time with this, as it just led to leaves and debt. But what I learned from that is that full-time was impossible and part-time was hell. If you can, decrease hours, go to flexible work, or work from home. I know it isn’t possible for some of us to not work, but sometimes it is equally necessary we try to find ways work will adapt to us. I haven’t, myself, found a way to support myself financially yet, so it isn’t easy, for any of us. But the road is an important one for our wellbeing. Equally important to do any accommodation work offers.
- Please ask a medical professional about persistent sadness, despair, suicidal ideation, hopelessness, and lack of motivation… or other signs of depression. Anxiety and depression are highly comorbid with a lot of pain conditions, including migraines. And it can be extremely beneficial to see a psychologist and, for some of us, take medication.
- Understand that self-care is vitally important. We cannot control pain, but we have modest control over suffering. And anything we do be it pampering, Epsom salt baths, hobbies, napping when we need to, meditation, or anything else we do to help with our suffering is a Worthwhile endevour.
So just remember when you are going through hell, sometimes we really have to review ourselves, our lifestyle, our mental health, and work. To find some way, in whatever fashion, to get out of survival mode and to treat mental illness. I don’t like to think of anyone out there that is living like I did for months, let alone years. It makes me worried and deeply sad for them. And if I did, others do. And that is not something I would ever want someone to have to endure. I’m not saying I’m not in hell now, it is just a different hell. One that isn’t quite so threatening to my existence. I almost didn’t make it though. And I was in it for far too long. If there is anyone reading this, where it makes way too much sense, then I hope I helped a little.
Here are some of the things I did:
- I got a new doctor. Mine was indifferent to my suffering. So I needed a new one that listened to me that I was struggling.
- She sent me to the pain clinic.
- I regularly saw the psychologist at the pain clinic.
- I do the regular meditation that was suggested to me
- Their psychiatrist put me on Abilify
- I went from full-time to part-time… but that is a problem now too. Like I said work is a real difficult one to figure out.
And all that, eased me out of survival mode. Still have daily migraines. Still have Fibromyalgia. Still have depression, but treated. But the raw, desperation isn’t there. The deep despair isn’t there. I worry a lot about my future though, but instead of focusing on the torment of it, I focus on what to do about it.