Most of the time I feel…. Heartbroken. Defeated. Exhausted. Severe chronic complex migraine (hemiplegic migraine) is a thief and a murderer of happiness. I am working on coping skills to help me put up a few defenses against this dementor (little Harry Potter there for you). This month I began Cognitive Behavioral Therapy (CBT) in hopes of cutting down my stress triggers. After a tough first visit, I spent days mourning who I used to be before migraine invaded my life. It’s a heartbreaking place to be.
I’m learning acceptance as best as I can but it’s one of the most difficult things I’ve ever had to do. I’m good at hiding it all because I’m a natural at hiding my emotions. I’m tired of pretending I feel good so others don’t feel bad for me or I make them uncomfortable. For some closest to me, the fact that I’m in bed often seems to bother or maybe even anger them. They will probably never understand and I have to get to a point where I don’t let their ignorance and lack of empathy affect me so deeply…but for now it does. I fight migraine everyday, if my pain makes you uncomfortable, that’s your problem not mine… If only I could keep that thought going! Time…in time.
My husband and kids are by my side when I need them most. They get it. While I’m know there is resentment towards me for the “normal” life they have lost due to my health, I also know they are at war with those feelings inside of them because they witness the scary, severe migraines I live with that now trigger non-epileptic seizures. We are doing our best. This disease is so disabling. I have good days with pain levels around 2-3. I’m able to function and make dinner at that point, but the pain rarely leaves me. I have to mind EVERYTHING I do to maintain it. Unfortunately I’ve been having more days around 5-6 and a few at 7-8 that keep me in bed all day. That’s when the depression kicks in.
I cry a lot when I’m alone. I miss who I used to be when I only had a migraine maybe once a year. I was on top of the world. I never had to spend time figuring out the words I need to say in an active conversation. Simple, everyday words. I will eventually get it, and if I don’t I’m a broken record, asking, “what’s that word I’m trying to say…” Or being in the middle of a conversation and losing the ability to speak coherently at all. Now that one really freaks people out! What keeps me from keeping a job the most is the inability to do simple and complicated math formulas on a spreadsheet. Later in my career this became a real issue.
My problems are not just cognitive. They can be physical as well. I could be walking through the grocery store and all the sudden my left leg and left arm become really weak and I have to stop walking. What about when my face weakens on one side and it droops similar to bells palsy and locks up tight to where I can’t speak due to a locked jaw. Oh man, once it releases I’m in so much jaw pain and the muscles are so tight! My left eye swells up and turns lightly dark like I was punched…and droops too.
Maybe I’ll even start convulsing and have tremors. This happens in a cascade. Usually all the facial and weakness symptoms come first, followed by extreme left migraine pain. It as at this point if the migraine pain in my temple or head is strong enough will trigger the seizures. As long as the pain remains strong the seizures do not stop. If the pain comes and goes so do the seizures. At this point it’s time for the ER for something that calms my central nervous system. It seems to work well on the seizures at least.
These stronger episodes happen about once a week right now. Daily, I deal with the aphasia, light weakness, mild migraine pain, muscle tension and knots, neck and back pain, pinched nerves along my spine, tail bone pain, Raynaud’s, shooting pain in both knees, shooting pain in my abdomen on the left side at random times, shooting pain in my back with posture, and other ailments I can’t think of at the moment. It’s my new life now. I still can’t wrap my mind around the fact this is progressive and could get worse.
I’ve been told in CBT that it’s important I accept this might be my life for the rest of my life so that I can move on learning how to cope and find peace figuring out who this new woman with disability is. I really want that. I want my Achy Smile to be less achy and more smile because I choose not to let pain defeat me. I long for that. I feel that my depression and negative thoughts of loss and grief do not allow me to move pass a horrible trigger called “stress.” It’s one of the worst but not something we cannot eliminate. With time and patience I hope to eliminate stress as a trigger by changing the pathways in which my brain works to deal with negativity, worry, and depressed thinking through CBT.
It’s exciting and gives me hope after reading the new studies that have emerged about Migraine and CBT. They have seen significant reduction in the number of migraines in patients who successful complete the sessions. It is a difficult therapy, but I feel it is well worth it.
Here are a few articles that talk about CBT for Migraine:
Have you begun CBT? Has it helped in any way? Let me know in the comments, I’m really interested to know how it’s helped/not helped you.
Erica Nicole Carrasco is a blogger sharing stories of life with Hemiplegic Migraine and Non-Epileptic Seizures. She takes you on a journey through life’s ups and downs, smiles and frowns with chronic illness.
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