Advocacy, Chronic Illness, Chronic Pain

Chronic Migraine Awareness- Part of my Story

Today is #shadesformigraine, so I thought I’d share a bit about my story in awareness to this horrible nerological condition, called migraine. I was diagnosed with chronic migraine (CM) in 2014, and have suffered ever since. It’s a deliberating illness, that can be disabeling at times. Having this illness has shown me how crule the world can be, how crule doctors and people can be when you mention you have CM. I try raise awareness as much as I can. My CM is alot better these days, and im forever greatful for myself, unfortunately it took alot of advocating for myself, alot of arguring with doctors, and alot of effort and research. I decided to take my own path and stop all treatments all together, stop seeing specialist for my CM, and took matters into my own hands. And almost immediately I was so much better, Im someone who’s very sensitive to medications, if there is a side effect, I will get it. But unfortunately I was lied to, and some treatments, particularly this one treatment I did for almost a year actually made my CM worse and changed the location of where I usually get migraine attacks, which made them unbearable. Because of what I’ve been through and how i’ve been treated, I now make my own decisions, advocate for myself more, say no, ask a thousand questions, and be true to myself. A doctor or specialist is there to guide you, but YOU make the decision, YOU decided what you want to do, and what the next course of action is.

I’ve tried pills, injections, pain killers, botox, vitamins, I even had ketamine injected into me for 5 days straight. I’m so thankful that I took charge of my life, and decided what was best for me. I can’t even describe the pain and complications I had from most of the treatments I received.

I’m not against medication, I still take some for my other chronic illnesses, just not for my CM, except for natural remedies. I’m also not blaming any doctor for the complications, I’m saying that there was no need to withhold information or lie to me, if they had told me everything and told the truth, I could have made an informed decision, and I probably wouldn’t have gone through so much pain.

What helped me immensely was first advocating for myself and pacing. Pacing is a technique for managing chronic pain symptoms, and preventing attacks. It involves taking breaks, knowing when to take breaks, not overdoing it, taking a break before you actually need a break. Pacing allows for the severity of the pain to reduce, it’s all about balance and time. It is not a cure, but then again not may of the medications and treatments are. One day I will make a post about pacing, since it helped me so much, it’s worth trying.

I’ve almost been fired from my jobs due to CM, the thought of going to work with computers, and people, and lights, and lots of patters, was terrifying some days. But I really had to push myself… So I thought. I would seek so many different cures, but that’s not what I needed, I learnt how to live with my CM. I was too positive that the next thing I’d try would cure me, every doctor I saw set me up for failure, telling me this will work, that it will cure me. But that’s not what I needed, I needed someone to not put false hope into my mind, this false hope let me into spirals of depression and anxiety. I needed someone that doesn’t portray toxic positivity, and actually help me live with my CM, and learn to manage and do things whilst I have this illness. But that is something I taught myself.

I remember when I was 22 a neurologist referred me to a psychologist and in that referral he called me an adolescent, he sent me to a psychologist who’s main focus was adolescence, he literally treated me like a child too. I do have a very soft voice, if I were talking to you on the phone, you’d think I was 12 years old, but just because I may look young or sound young, it doesn’t give anyone the right to treat me like a child. He also wrote lies in an update letter to my main doctor. This is the same neurologist who withheld important information about the treatment and made my migraine attacks so much worse. I was so angry with this neurologist I wrote him and email explaing what he did was wrong, and how he treated me was not okay. And I got a written apology. I will never forget this, because this is the first time I have ever stood up for myself regarding my health.


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