I'm sitting here in my living room listening to the birds chirping as the sun rises (its 5:30am). This blog is me getting stuff off my chest. I have to release this "stuff" sometimes... I'm not looking for answers, reactions or sympathy BTW I just hold a lot of stuff in. Also, I don't have a lot of people I can let it all out to (for lack of the ability to get it out or maybe lack of motivation and I get on my own nerves so I can only imagine that I do the same for others and I don't want that).
I apologize in advance... It seems many times when I write a blog or at least it feels this way, it is me pouring out a bunch of junk that is swirling around in my head.
First and foremost I am very grateful to be alive, grateful for all the blessings in my life, grateful for every one of you here at Strokenetwork, grateful for the opportunities that have found their way to me... In general I am grateful, blessed and thankful every new day I wake up and live life. Second, I am not seeking answers... Just feeling some weight that i need to unload. Third... Anyone and everyone is welcome to comment (I love all of you and God bless you if you read the whole thing lol).
Sleep... this is a daily struggle for me in a way that most will not understand and that's ok. I'm up bright and early this morning and thankfully have been able to rest my body and mind over the last 24 hours. For the past five and a half years (well 6 and a half because i had horrible insomnia the year before my stroke) I have struggled with sleep issues in one form or another. I can't tell you the enormous effort I have put into trying to navigate, fix, and explain this. I have kept months of very in depth sleep journals, tried so many things either from a physician, a sleep specialist, friends, family, and my own research yet I am still in the midst of my bodies ability to regulate my sleep failing me. You see, this "thing" is not a simple challenge. It's not about making habits, sleep hygeine, routine, etc. At least not in the way that 99% of people will understand. The day I had my stroke was the beginning of what I call sleep turmoil. (Insomnia is one thing like before my stroke but turmoil is another... something that has caused me a lot of distress). My Psychiatrist and I have been trying to work together with my other doctors to make sense of it and to hopefully find beneficial answers.
OK lets get a little background. On July 5, 2015 I had a massive bilateral cerebellar stroke in the PICA region. It is one of the rarest phenomenon by far in stroke understandng. In other words I am a unicorn. Hard to find facts, hard to find help, hard to find others like me, hard to find answers, hard to understand (most Doctors and yes even Neurologists know very little about my kind of stroke). To say this has been frustrating is a huge understatement. To tell you everything that I experience or have experienced over the past five and a half years would take me forever. I don't even understand a lot of it. Heck even my Doctors don't. The first two years after my stroke, I slept an enormous amount every day. Neuro fatigue, post stroke fatigue and my brain working hard to repair the damage was debilitating and still is at times. Then my sleep started to change... Imagine sleep cycle being elliptical and the good part was the small end and the not so good part was the big end. That is me. From what we (myself and my Doctors) can gather is that my brain and my circadian rythym just do not work properly. I now have many defecits that involve executive function, cognitive function, higher brain function and it is a struggle. Trying to explain to someone else that my brain is damaged and therefore does not work properly seems simple but in truth it is almost impossible. For many stroke survivors, physical defecits are very often present and cognitive defecits thankfully do not happen to everyone or they get much better. (Please don't take this next sentence personally. It is direct and seems cruel but it isn't in my opinion but can help to evoke a bit of understanding). So when I say that my brain is damaged and I have defecits... It means that my brain can no longer do some of the things I used to do without thinking. This is not for lack of therapy, intervention, motivation, etc. So here is my harsh example and I am so sorry in advance.
Scenario: I explain that I can't get a handle on my sleep. It is affecting lots of important aspects in my life. I miss appointments because my body sometimes won't sleep until it wants to. I miss alarms I set for everything I do because sometimes I sleep so hard that it doesn't wake me up. I can go on and on. The person I am talking to also had a stroke but experiences different defecits than me (more physically noticeable defecits). They say "Tracy try doing this ____. Tracy follow a schedule. Tracy....and 100 other suggestions.". No matter if I try to explain the gravity of my issues it doesn't compute. I can't seems to mean I am not trying enough. I can control this. So my answer is "______ move your right hand. (this person has right side paralysis or defecits). "I can't move my right hand... it no longer moves due to my stroke". What if I said in response "____ try harder... you are not trying hard enough. Try doing this ______. If you work on it over and over and do the right things then you will move it.". Think about that. Not everyone will have a aha moment but some of you will feel the aha moment immediately. It's like having a mental illness or having comprehension problems compared to having a cast on your arm because it is broke or having stitches to close a laceration. Have you ever heard of "Seeing is believing."? This is what I experience almost every day. From all walks of life. No one ever intending to affect me in a negative way... but I am. It weighs on me heavily. Not only do I feel like a failure at times but I feel like others may see me this way. It's never an excuse but I carry emotional pain from these type of interactions. I don't know how to get past this. I'm already a hermit. I am thankful that I speak to my therapist every week. It's freaking hard and sometimes I am swimming in the toxic feelings of my own short comings and the feelings that my brain doesn't freaking let go of. Like this morning. it is very appropriate that it is raining.... I don't feel alone.
Depression/Anxity: Now this has been an up and down ride for me for so long and after my stroke it is worse than ever. Sometimes, my mind is light and I feel very blessed at so much around me. Regardless, I am grateful every day... even when it rains. Other times, I get pulled down into a vortex of sorts... dark, sad, exhausted, emotionally a mess, in pain, shameful, hopeless, and it is hard for me to feel good about anything. I've been in therapy long enough to recognize these signs and to reach out and ask for help. I think I am medicated in every way I can be to help with this. Without it, I don't know if I could get out of the vortex. My Psychiatrist and I have worked very hard over many years to find the most helpful combination. Part of this is PBA (Psuedobulbar Affect) or emotional lability to some. It is brain damage caused by the stroke and for me it never went away. Thankfully, most people get so much better or 100% better with time. I am on medication specifically for this as well. I also now have extreme anxiety with panic attacks. Many will relate to this. It is a daily struggle to keep my anxiety at bay and I have to take meds to help with this too. Without meds I was having multiple panic attacks every day and now I still have a few each week but with the help of meds and the many coping techniques that I have learned... I feel at ease more than not. Anyways, I am a perfect speciman for a Psychiatrist (my Psychiatrist is a life saver for me and I am so thankful for him). On a happier note I have gone from crying to smiling and the rain stopped!
I hate feeling so negative all the time. In the same breath though, I am full of positivity. Talk about irony. I suppose I am in my head way too much all the time... is it bad to say I wish I had my daughter in the closet....ready to come out and spend time with me and pulling me out of my own thoughts at times and also equally ready to go back into the closet when I need to rest and have quiet. LOL ok I am not crazy... LOL again at least not that crazy. I miss Hailey and we haven't spent time together in quite a while. Today, her and I truly enjoy our time together and we have a very strong bond. It's not always been like that. I just take it all in and cherish every bit of time we are together. I think it is time for a call today. Maybe time for a visit. Maybe even a time for a sleepover!
I think I will stop here. I had so much more I needed to dump but it seems just letting some things go is very therapeutic and I feel better. Haha I can hear a rooster crowing and I live in town. He seems to be an hour late (maybe he is not used to the time change yet). I'm going to make some breakfast, take my am meds, snuggle with the kitties and watch a good movie I think.
I ❤️ love all of you! Thank you for all you do!