I think one of the most difficult aspects of my health issues that I don't talk about is dealing with guilt, and so today I wanted to take a few minutes and get my thoughts out on how it's been a struggle for me.
I should preface by saying for those that read this or follow or will follow me, I'll likely retread water on my health a lot on my posts, but I think it's important to have the proper context. With that said, I've been dealing with migraines, neurological symptoms, pain, muscle weakness, etc... for around three years now. The nature of my injury and my health issues is a part of the medical world that we still have a lot left to learn, and so often there are more questions than answers. Officially, I'm under two umbrellas: post concussion syndrome and myofascial pain syndrome. It's possible that these aren't even accurate, but it's the best I have right now.
The severity of my symptoms often are cyclical, sometimes even unpredictable. If you're familiar with the 0-10 pain scale, then I'll just say a normal day for me is a 4-6, a good day is a 2-4, and a bad day is a 7 or above. Over the last 3 years, I've had periods where I've gone weeks without getting as bad as a 7, and weeks where I never saw a 4 or below. I'm just now coming off of a 3-week period where I was a 6 or above every day. Sometimes my change in severity can be more abrupt and sudden. For instance, just this past Sunday, when I went to church I was around a 7, but by the late afternoon as I down to a 3. Sometimes I go into work and make it through the day at my baseline of a 5, but the minute I get home I'm at an 8 and can't do anything but sit on the couch. This is where I struggle with guilt sometimes.
I'm always very self-conscious about the state in which people see me in, but I only tend to show my face out in public unless I'm feeling at least manageable. Most people don't see me when I'm at my worst, and so they don't know or understand how bad it really gets for me when my limbs go numb, or my migraine/pain gets so bad I start getting delusional/irrational, or when I start slurring and stuttering my words when trying to speak. I also have been told to "shut-it-down" if I start experiencing these symptoms; so, I'm not really supposed to do anything but rest anyway when I feel like this or else I could risk some much worse issues.
When I am around friends/family, like I said before, I'm usually feeling better that day, and for some reason I get myself paranoid that at that point there's an expectation for me to be around more, or for me to force myself to attend social functions, family functions, go to work, etc...when I'm not having a good day. I also get very paranoid that people don't believe me when I do tell them I can't do something because of the symptoms I'm experiencing that day - although I think this is the case because of certain family members who have expressed this sentiment to me.
I've been told a reason my issues became so bad/complicated had to do with the fact that I wasn't properly diagnosed for the first two years after my injury. During that time I did try to go about life as normal, but I had a severe neck injury I didn't know about. At the time I thought I just had brain damage or something. It was like if you had broken your arm but you kept using it - you would cause some serious damage over time. I caused some serious damage over those first two years, and it devolved into others issues as well with my muscles in my shoulders and upper back. So, my point is that on days where I feel especially bad, by doing things, even as simple of social events or working - it's like "picking at a scab." It won't heal if I keep doing it.
So, that's my daily conundrum with guilt. Some days I feel good enough to work and to engage with people, and it's good to do so, but some days I'm not doing well, and there's this looming cloud of guilt over me. There's a lot of pressure for me to work more from the office because it's just myself and my dad and sometimes I feel like there's pressure for me to do things like go out with friends and family to maintain those relationships, but at the same time I do those things knowing I am putting my recovery at risk by not resting and getting my migraine/spasms under control.
I think a lot of people dealing with chronic pain or a chronic health condition probably deal with this. Also, I don't blame others in how I feel - I don't even blame family members who openly question the validity of my health. It's definitely one of those things where if you're not living it, you just don't understand. That's just a truth. I also know that the guilt I feel is just temptation from the enemy to get me depressed and isolated.
It's hard not to feel condemned when you're in chronic pain, whatever it be by God or man. You can easily feel rejected and forgotten. It's especially difficult for me in dealing with the guilt of what I can and can't do, and what I choose not to do. You feel like you're always letting people down and that you're useless - like you don't have anything to offer anyone.
It's a lie, though, and I hope more than physical healing that I can really grasp the freedom God has given us over these mental and emotional chains. I know that, no matter what happens on this side, one day my body will be made whole again, anyway, but it's in the here-and-now that it is so important for me to break free from the constraints of fear and guilt.
