Have you ever been so chronically tired that you actually are envious of hibernating animals and a coma sounds so relaxing?
I am chronically worst in my health episodically from January to late May, and yet it begins as early as October and just because daily not long after Christmas; every single year. Usually come the new year I spend several days or nights in a row in the local emergency department to end cyclic vomiting syndrome and migraine attacks. Often meeting my new yearly insurance deductible in around a week to 10 days. YEAH.
But this year has been different! Yes, finally a positive change to the last 10 years of chronic illness patterns. I have been seeing my neurologist in the city every two months. He decided just this last visit (early March 2017) to wait for my chronic cycle to end before checking in again in June. He has taken me off one medication, amitriptyline, in order to see if I could lose some of the 40-ish pounds I gained in a month when I began the medication. I am only 4 feet 11 inches ‘tall’ and petite… so 140+ pounds on this frame is a bit much when it is just fat and not toned muscle for core strength. I was originally started on that medication for my migraines and possible c.v.s. (which the doctors would never actually diagnose me with as it is SO rare….but my neurologist says I do have all the symptoms of it and he believes I do have c.v.s. and un-typical chronic migraines, akathisia, essential tremor, still have nerve damage from cancer in 1995-1996, sleep problems but none of the MSLT tests diagnosed me despite showing definite interrupted sleep and lack of REM… and the list goes on). I have been worried that without the amitriptyline daily that my c.v.s. would come back with a vengeance, but it has not. This time of year I am usually so bad with c.v.s. it was nerve wracking to stop the one thing that was supposed to be the best for sufferers.
Luckily I have been able to abort all episodes at home and have NOT had to go to the E.R. in over six months! That is a first in a decade for me!!!! SO, I am not anywhere near meeting my deductible right now lol I can handle that though as it is a crazy high one for me alone. Plus no more co-pay……… which makes appointments expensive out of pocket right away. SO I have been having nausea and migraines near daily all these months, but all have been bearable at home and all my as needed medication hoarding helps.
So in a way, I feel that my need to sleep a ton during these times is almost too ironic as I am already squirreling away medication for the winter months haha!
The medications I am on daily now are just Venlafaxine (which seems to be working very well, despite it causing me to feel like I am going through menopause at *almost* thirty years old… hot flashes galore!). Then because of having migraines every single day for months straight… I have been taking sumatriptan nearly every day and if nauseated enough that oils are not enough, I also take my promethazine. These three things interacting in my body means I am drenched in sweat and zonked out like Sleeping Beauty… except a lot less attractive haha
The cats have really enjoyed all the time cuddled up in bed, but boy am I ready for summer and feeling like a non-catatonic human being again. Grass, fresh air, the smell of wild roses, clover, butterflies, beach days, agate collecting, and pretending we don’t need to sleep ever again haha It’s an Alaskan thing……. trust me. We’re odd for a reason around here 😉
I am hoping to get fresh blog ideas this summer and to try and schedule a more regular writing time to get this blog really going though. I am a major procrastinator and hate trying to write about whatever. I am worried that with my lifestyle of being basically your modern invalid that I don’t have a lot of experiences to write about and that I’ll become a bit of a broken record writing about so much of my health life. There just is not really anything else in my life due to being home and asleep so much of the last 10 years.
Hard to believe all this time has flown by though. I have had plenty of wonderful experiences and sad times come along over the last decade of life but it has just gone so quickly. It was super weird to have my high school ten year reunion this last fall. I am truly thankful that I did go though, as one of the people that came ended up dying in a vehicle roll over a few months after the reunion. The next time I saw a bunch of old classmates was at his funeral. It is the second person to pass away suddenly of our graduating class. I truly sit back in awe of all the people that have touched my life over the 30 years I have been alive. Many in such wonderful ways and a few in very painful ways. I feel fortunate overall in my life experiences. It has taught me that I do need to focus on the good little things of daily life. Because in the end, those are the things that stick with us when we look back on life. The little things that we end up missing about someone once they are no longer with us. I try to not worry about the fact that my baby is now eight years old and will transform before my very eyes into a young woman. It begins to feel like I will go to sleep and awaken to her as an eighteen year old and I’ll be 40….. like BAM! Old sauce.
Yup, that is sometimes what keeps me awake at night… and maybe just sort of creeping up into her room and watching her sleep. Sometimes. Ok, a lot. BUT I am her mom… I mean I gave birth to her and wiped up a lot of poop over the last 8 years so I can be a creeper, right? lol
Matt is going to be thirty-one in July and he is really starting to feel like we got old somehow. He is starting to be around enough of the younger adults and realising that what is ‘not old’ to us is basically ancient history to them or stuff they have no clue about at all. Plus, there are the random gray hairs, aches, and not being able to wait to go to bed once you have had your dinner and wound down for the night. He is like, “So am I super lame and boring to be married to?” I laugh and look at him with a big grin, “Heck No! Thank goodness you just want to relax at home and be lame with me since there is no way I would be caught dead out on the town the way I am 90% of the time!” We find comfort in each others lame-ness lol Watch out you whippersnappers! Senility creeps into your life in bits…. and you will wake up one day thinking, “How am I not 18 still?!” because it feels in a way like it was just yesterday; yet forever ago. So learn to guard your rest, don’t spend all your earnings, get people’s addresses since you probably will stop hanging out every weekend, stock up on pajamas, pay your bills, drink lots of water, eat something healthy every day, tell your family you love them, and don’t let facebook be your only form of socializing (especially if all you do is scroll through your feed and never actually talk to your ‘friends’). Time will flow ever more quickly with each year.
To end things for now, let me know if there are topics you would love me to write about and if there is a series of posts you want from my blog. Suggestions are always welcome!
I also got on the instagram wagon! Not sure how to re-post stuff at all, but I at least know how to reply and follow folks! You can search for me on instagram using the name: ally schuetzler. https://www.instagram.com/allyschuetzler/
If anyone is looking for a copy of my book as a paperback you can still order them off of Amazon( https://www.amazon.com/First-Easter-Bunny-childrens-discover-ebook/dp/B00RY0ZHLQ/ref=sr_1_1?ie=UTF8&qid=1490810583&sr=8-1&keywords=Schuetzler), or through my publisher online (https://www.publicationconsultants.com/?s=Schuetzler&submit=)
Love to you all, and happy spring of 2017!