Living with frequent headaches or migraines can be hard because there is so much stigma around migraine or headache disorders and the only people that truly understand that migraines are not just a headache are other sufferers. Most people think that whenever we have pain the answer is Tylenol which is frustrating because if Tylenol broke a migraine doctors wouldn’t prescribe medication. I have Hydrocephalus which means I am prone to headaches or migraines and my whole life I had no problem with them except for the occasional migraine that everyone gets. A few years that all changed and I started getting headaches that weren’t manageable and needed medication so I could function. Living with headaches or migraines is more than just a headache and there is so much more to living with that people overlook and don’t see. In this post, I am going to talk about some harsh realities you live with if you deal with headaches or migraines that most people may not even realize is a problem.
Sleep can be a hit or miss- I am unemployed and live with my parents so if I wanted to I could sleep in until ten but I don’t think I have ever slept in later than eight. My body won’t allow me to sleep in later and it’s not unusual for me to wake up several times during the night and only get three to four hours of sleep. I am used to being sleep deprived that I can function with little sleep and it doesn’t really phase me when I don’t get the recommended amount like it would for most people. I expect to be sleep-deprived and don’t need four cups of coffee to get through the day if I was tossing and turning all night. Drinking more coffee doesn’t actually make me feel more energized but less is always better than more because then I have a better chance of sleeping well the next night.
You pay dearly for going to events- When you live with any kind of chronic pain the better your nutrition the better your pain will be. If I am home it’s easy to have good nutrition but when I am out at a public or family event it can be a little harder because sometimes the food choices are not the greatest. If I ate three donuts and then a piece of pie I would of stoma issues for hours but that would be the least of my problems. My biggest issue wouldn’t be my stoma issues that would likely stop in a few hours but it would be the unmanageable headaches that would put me out for the next several weeks because I made a poor choice. This seems like it would be a great idea in the moment but give it a few hours and you’ll quickly realize it was not such a good idea. It’s okay to occassionally indulge but when you live with pain you can’t always do that without paying dearly for it.
I can’t drink go crazy with caffeine- Most people should not drink four cups of coffee everyday because it can be dangerous for your health but they can if they wanted to . When you live with frequent migraines that may not be a good idea to drink coffee in excess because for some people it may help alleviate pain but for others it will trigger it and you should to avoid it alltogether. I love my coffee and before my headache and migraine pain became frequent I was able to drink massive cups of coffee everyday that you wouldn’t believe but now if I drink more than two cups I am paying for it for the next week. I probably could finish a massive cup of coffee like it’s noone’s business but would feel horrible for the rest of the week so it’s not worth drinking that much coffee when I can drink less and feel great.
Alcohol is the death of me- I never was a regular drinker and I only had it occasionally with friends but now I can’t even tolerate it. About a year ago I decided I was going to quit drinking even on special occasions because it’s not worth the pain. I felt like I was spending more time recovering than I actually drank that it was miserable and I don’t know why I ever did that to myself. The pain didn’t seem worth it to me because there are so many other substitutes you can have when your out with your friends and it doesn’t have to be alcohol. At first, I thought I’d miss an occasional margarita but I don’t because I slashed my headache days in half and for me, that is more worth it than any drink. The drink isn’t what makes something fun but it’s who you are with and if someone tells otherwise then your with the wrong crowd.
Exercise can be triggering– I hate it when people tell me that if I did more exercise I would have less pain because this is so far from true and exercise sometimes can trigger attacks. I have triggered a headache by walking down the hallway a few times in my own home. Exercise can help manage pain but you need to be able to find the right balance of exercise and be doing the right kind of exercise. I have done weightless exercises that barely got my heart rate up and had to stop because I had a headache that came out of nowhere. Luckily this doesn’t happen all the time and I can still exercise most of the time if I watch my intensity level. Some people with migraine or chronic pain disorders can’t exercise at all because it worsens their conditions so don’t ever tell someone exercise is the solution because it not always is!
It’s more than just physical- Living with migraines or headaches affects you not just physically but also emotionally as well. Migraineurs tend to fell like their pain is being downplayed or that noone truly understands what they are going through. Sometimes I will get really emotional and start crying which makes sense on high pain days but on low pain days it doesn’t make any sense so I am assuming it’s just the hormones getting to me!
It’s not just head pain-Migraine pain is more than just head pain and some people don’t even get head pain as their first symptom. My first sign of an attack is not head pain but it’s jaw pain and muscle pain that travels throughout my body. Before I had surgery my occupational therapist would give me a shoulder and jaw massage which seemed to help me have less attacks but there were still some so I have to be very mindful of how many chewy foods I eat because that can sometimes trigger it.
Your appetite is always changing- Some days I will have a normal appetite and am able to stick to my nutrition plan while other days I’m like where is the ice cream or have no appetite at all. It all depends on how much pain I am in that day because on high pain days I tend to reach for carbohydrates and on low pain days I usually eat healthier and have no problems sticking to my nutrition plan like I do when pain is high.
Living with headaches and migraines is a full-time job because pain and fatigue doesn’t take a day off. Some days you will have a low pain day but you never know so it helps to be on top of your pain for more pain-free days. Medication can help prevent a lot of attacks but in my experience, it can make you feel very tired, and is nothing is totally foolproof. I never knew how much living with frequent headaches or migraines affected your life until I started having them and until I got them under control I was depressed because I never knew if my life would be normal again. Living with headaches and migraines is so much more than just a headache and affects your body in more ways than most people will ever be able to understand. This is only my experience with migraine pain and not everyone will have the same experience because we are all so different. I hope this helped you better understand the realities of living with pain and if you have any questions please leave them in the comments below. What realities do you face while living with pain?
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