September is Hydrocephalus Awareness Month. I live with a condition called Hydrocephalus, which is a neurological disorder that happens when there is an abnormal buildup of cerebrospinal fluid deep within your brain. Everyone has this fluid, and for most people it’s not a problem and cushions your brain. When you have Hydrocephalus, there is too much, which puts pressure on your brain and is fatal if left untreated. You can live well with Hydrocephalus, but there is no cure, and the most common treatment is to have a shunt put in your head that will drain the excess fluid away from your brain to other areas of your body. People with Hydrocephalus can live a normal life because shunts are very durable, but they are not indestructible and can malfunction. My physical disability limits a lot of activities, and I am not nearly as limited with Hydrocephalus but there are some activities I won’t do because of it. In this post, I am sharing a few things you will never see me do because of Hydrocephalus.
I will never get a massage without knowledge of Hydrocephalus- When I was doing occupational therapy, my therapist, who was familiar with Hydrocephalus, gave me a neck massage every week because I get tight easily. I have never enjoyed getting massages, and although it did help relieve some tightness, so I got fewer headaches, it was very painful in the moment, and I will never understand how people find them relaxing. You won’t usually find me booking a massage, and I would much rather get a facial, but if I was going to get one, I would make sure that person had knowledge of Hydrocephalus. I am very picky about who I let give me a massage because I have shunt tubing in my neck, and you can cause a shunt problem if you don’t know what you are doing. I will accompany my friends while they get a massage, but I won’t pay money to get one myself because it’s not enjoyable for me.
I will never go skydiving- I will never understand why anyone would want to jump out of an airplane, and to me it sounds like it would be more scary than fun because I would be worrying the whole time that my parachute would fail. If I didn’t have Hydrocephalus, I don’t think I would have any desire to go skydiving, but now I can’t even consider it because I have been told by doctors that it’s dangerous for people with Hydrocephalus. Activities where there is a pressure drop can be an issue for people with Hydrocephalus because the last thing you ever want to happen is to be unconscious while you are jumping out of a plane. I will watch other people sky-dive if they want to, but you couldn’t pay me a lot of money to do it myself because there are too many risks associated with that.
You will never see me lift as heavy as possible- Weightlifting is hard for anyone, but it is even more difficult for me because I have shunt tubing in my neck. You can lift heavy weights safely with Hydrocephalus, but you will never see me lift as heavy as possible to impress my friends and ignore neck pain. Shunts are very durable but are not unbreakable, and you can cause issues when you lift too heavy and put too much pressure on your neck. I sometimes have to take more breaks during exercise because I get neck pain that someone without Hydrocephalus wouldn’t experience and try to push through and ignore pain. I am always very aware of my body during exercise and don’t do exercises that put a lot of unnecessary strain on my neck because that could end badly. Resistance training is so important for everyone to do, but you want to be smart about it and listen to your body because pushing through pain when you should have stopped is not a good idea.
You will never see me ignore severe headache- People with Hydrocephalus are more prone to headaches than someone without Hydrocephalus. Severe head pain can be a sign of a headache disorder, but it can also be a sign of a shunt malfunction that needs immediate treatment. I live with chronic migraine, and most of my head pain is not serious, and I don’t make doctors’ appointments every single time I get a headache. I don’t ignore headaches because when you live with Hydrocephalus, it is so important to figure out if your head pain is a migraine or a shunt malfunction. If I have had a migraine for two weeks and it’s not going away, I get my shunt checked because severe headache is the most common symptom of a shunt malfunction. You will never see me ignore a headache because, although most times it’s not serious, there is going to be that one time you ignored it when you shouldn’t have.
You will never see me fly to a foreign country– When I fly, I have seizures because my shunt can’t handle the pressure change on planes. I don’t usually fly to visit my family in Michigan and usually we drive, but if I were to fly somewhere, I would never go anywhere that didn’t have good hospitals. Every time I get on a plane, I have to anticipate needing to go to a hospital to break a seizure so if I am going to fly, I usually stay within the United States because it’s too risky for me to fly somewhere that didn’t have doctors familiar with my disability. I wish I could fly because I hate long road trips, but the reality is my shunt can’t handle it, and you won’t find me doing it very often.
When you have a physical disability, you often have a lot of limitations, but fortunately, people with Hydrocephalus do not have nearly as many limitations. People with Hydrocephalus are more prone to headaches and epilepsy, which is frustrating, but you can do a lot of the same activities people without Hydrocephalus can. There may be some activities that you have to modify or can’t do at all, but you can live well while living with Hydrocephalus. Listen to your body, and if you are doing an activity that doesn’t feel right, then stop doing it because there is no activity that is worth damaging your shunt and needing surgery. Most people with my disability have Hydrocephalus, but you don’t need to have Spina Bifida to have Hydrocephalus, and it can affect anyone. Everyone with Hydrocephalus has different triggers, and not everyone will be unable to get on a plane; some people have no issues flying. If you are not sure if an activity is safe with Hydrocephalus, never be afraid to ask your doctor because it’s better to be safe than sorry. What activities would you never do because of Hydrocephalus? If you liked this post, please leave a comment below and share it with your friends.
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