It’s been a long 342 days…

It’s been 342 days since my inspiration for starting this project passed away. Not quite a year, but more than 11 months. A long time, and yet it feels like barely any time at all. For years my friend Michelle was the only other person I knew who suffered from a chronic pain condition, and when I say suffered, she really did suffer. Michelle was bitten (by a person) shortly after graduating college and developed symptoms that eventually lead into Complex Regional Pain Syndrome, CRPS, formerly known as RSD (Reflex Sympathetic Dystrophy), which is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and is debilitating. It usually affected different limbs at different times for her and it was no joke watching her experience such an insane, complicated disorder. I’m sure some of you that are reading this may have CRPS, or know someone who does. Michelle passed suddenly and I will say that we did not expect for it to have happened at all. Although I feel like she was taken too soon and would never have wanted to have left, I’m glad that she is no longer in the pain that she once experienced.

I thought Michelle would help me with this project, that she would be one of my experts and pain patients to guide the process. I know she has still guided the process, just in a different way. I think about her every single day, many times, multiple times a day. She was one of the only people in my life that I felt understood me, and she let me know that. She was kind, and warm, deep, and strong. Life had tested her, and she hadn’t broken; She still had humor and wanted the people around her to be OK and comfortable, even ahead of herself. I miss her terribly and my heart aches for those closest to her, who no doubt feel her loss much greater than I do. We love you Michelle <3

I had no idea that her loss would kick off a year of a couple loss’ for me. Three major deaths occurred in the last 342 days in my life, all different circumstances, and it made me realize that as chronic pain patients we have to deal with grief differently than those around us. We have to go through the process differently because our bodies will fail us otherwise. Ultimately I ended up learning the hard way each time regardless, but I’m hoping you might be able to see the error of my ways and prevent yourself from making the same mistakes.

For those of you with narcolepsy, strong emotion can trigger your symptoms, so grief can be a period of time of extreme weakness, please be careful. For me, stress and anxiety cause the most intense daytime fatigue, so when there is a death, my body just shuts down with chronic fatigue in the days that follow. When Michelle passed I could barely stay awake at the viewing itself, and when we went back to her family home in between the call time, I had to stay behind when everyone went back to the funeral home because I had a sleep attack. What I didn’t have going for me at that time was proper medication management, so now I always try to carry the proper stimulant medication with me just in case I ever get that drowsy in public again. But, let it be a lesson learned for anyone dealing with similar high stress situations, give yourself extra time to rest or lay down and don’t feel guilty for it! Your body and brain need the rest, it isn’t your fault, it’s completely out of your control, and you’ll be doing yourself a favor in the long run by not crashing and burning later.

For those of you with high pain levels, you may not be able to handle all of the required sitting, standing, or walking that is needed when attending memorial services and that can be understandably upsetting. Seven months after Michelle passed, another good friend of mine passed, and again I went through the roller coaster of emotional and physical well-being. My friend Tim (Timmypie, as I called him) took his own life and it has been a complicated process to wrap my head around but I know I may never fully “get there”. We had an old, solid, friendship emotionally and it has been hard to reconcile he is no longer here physically, but I still talk to him like he’s around, so I like to think his energy is still present. The weeks leading up to his death were extremely hard on me health-wise. I went through a couple of really, really, really, difficult procedures and complications and was feeling extremely down about the state of my health. When I heard what happened to Tim I put everything aside and focused 100% on my friends and barely thought about myself for a week. In hindsight that was only a half good idea. I’m glad I took my mind off how bad I thought things were, but I shouldn’t have completely forgotten to take care of myself. I should have continued my medication consistently, and eaten & slept properly but I didn’t. I did myself a disservice because by the time the day came for the funeral & burial I almost couldn’t make it to the church. I don’t know if anyone else believes in signs & energy (I do), but I swear if it wasn’t for my dog begging for me to let him out extra early that morning (which he never does) and me seeing in my kitchen (of all places) a New York Yankees Christmas Ornament (in APRIL!??!?!) on the floor that the dog had dragged out (whhhhat!??) I knew I had to drag my 8 out of 10 in pain butt out of bed and get to the church because it was Tim (whose favorite team was the Yankees by the way) telling me I couldn’t miss this. I ended up speaking at the church and telling that story. The church was something I’ll never forget. I had never been to a memorial service where people got up and told stories and memories about the departed, especially not when the departed had taken their own life. But again, Tim battled some tough stuff in his life, he suffered, and in a way there was this relief that his suffering was over.  After the church I physically felt I could handle the burial and a couple minutes spent at a “reception”, but I couldn’t spent the rest of the afternoon visiting with friends I hadn’t seen that were in from out of town, I had to go lay down. It was the last thing in the world I wanted to do, but my body was screaming at me, and I had to listen to it. If I could do that day over I would have taken my medicine properly in the morning (and throughout the day), eaten a decent breakfast, and tried really hard to have gotten to sleep as early as possible the night before. I know those are all things that should be done in a perfect world, but I know they would have made such a difference in how I would have felt the next day…it’s the best advice I can give to someone else in a similar situation.

Finally, without going into much detail I was involved in a traumatic passing a month ago. The adrenaline spike caused a severe migraine to breakthrough which shouldn’t come as a surprise to most migraine sufferers who are reading this. I track my migraines using the app MigraineBuddy®, I’ve concluded that neck pain, stress and not eating are the three huge things that set off my migraines, so needless to say witnessing a traumatic passing counts as stress. I carry Imitrex 6mg injection with me in my purse for situations where a migraine comes on so quickly and painfully, so much so that if that I didn’t have it, I would be going to the Emergency Room to break the pain with IV meds. Luckily, the injection works for me in most cases, however I didn’t prioritize the migraine with everything that happened after the trauma. I got too caught up in what everyone else was doing or saying and I didn’t end up giving myself the injection for another 4-5 hours after I should have. Why did I prolong my suffering? Because I still haven’t learned to listen to my body among the chaos yet. The trauma had been cleared, there was nothing I could do for a very long time, but I continued to not make myself a priority. I’m asking my migraine sufferers out there, don’t make that same mistake. Don’t suffer for longer than you have to, please. When the services came around for this gentleman, a friend and neighbor,  I was so burned out with stress and anxiety, my narcolepsy and pain prohibited me from attending the church service and that’s something I still regret emotionally. The fatigue held me like a prisoner in my body but it was because I was too overwhelmed, and it’s easy to see why now:  I wasn’t taking care of myself!!

So please, when you are experiencing grief, trauma, hardship, real difficulty, times of change, don’t do what I’ve done in the past. Instead, try doing more of the following things: 1. Take your medicine consistently and as directed. 2. Make sure you are eating regularly. 3 Make sure you are getting enough sleep, but not too much sleep. 4. Make sure you aren’t spending too much time by yourself. 5. Make sure you are keeping critical medications on-hand in case you need them (such as the stimulants or injectables I discussed, etc…) 6. Don’t fight your body, if it wants to lay down, let it lay down. If it wants to sit/stand/stretch/walk/jog/jump/do a back flip (yea right!) let it, ok?

Because this post is long enough I’m not going to get into it now, but I decided the day after Michelle passed that I would stop drinking alcohol, so that means I’m 341 days sober. Holy shit, right? Yea, I know. More on that later, but if I could add a 7th thing to try and do when grieving, especially if you’re on medication, it’s try and stay away from alcohol, or at the very least, take it easy…it can be a very dangerous thing when your emotions are so raw, ok? Ok. Much more on that soon, I promise.

 

Sending you healing vibes,

Signoff

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CRPS is ranked as the most painful form of chronic pain that exists today by the

McGill Pain Index.

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