Once you’ve had chronic pain one now knows that a plethora of different kinds of pains exists and that they’re all completely different experiences, Pneumonia pain and discomfort is very different from that of chronic migraines is what I am getting at or even cluster headaches for that matter whilst they’re a headache disorder cannot be compared really to migraines in terms of pain levels except perhaps at the lowest of our pain scale. However nothing is worse than the kind of chronic pain, it can be anything from a toothache to the worst cluster headache and nobody enjoys it! That aching pain that disturbs one’s sleeping and eating habits effectively ruining one’s life nutritionally, emotionally, and physically.
Well folks tonight has been one of those very nights for me as it’s 5:32am and I’ve been awoken by pain 6 times in that period some being cluster headache shadows, others intense migraines, and sometimes rolling onto a bad joint with inflammation from my vasculitis. Whatever it may be the pain is just about unbearable and I want to scream waking everyone is this seemingly silent and pleasant home. I miss being normal and waking up refreshed when sleep was something I looked forward to and not feared so much. You see with cluster headaches the beast for me is a night and day guy but outta cycle he loves to present as shadows at night making me fear my short pain free period is over and that I must resort to using my medications again.
Not only that with the vasculitis the steroids make it even harder to sleep as many of you know. It seems like they use prednisone packs for most headache disorders to try and break bad attacks or bad cycles, I cannot seem to taper down whenever I get under 20mg something seems to go wrong and we zip right back up there to the 40-60mg range which increases my weight regardless of if I eat or not. It really makes me self conscious buying new pants every other week and having only like 4 pairs that fit out of 20 or 30 pairs of pants total. I mean it’s a blessing to be able to afford so many clothes but it sucks when you’ve tried on 10 outfits to go accept an award and none fit because medication that makes it impossible for you to eat without the aid of medicinal marijuana has made you obese. I blame it all on max doses of depakote and all the prednisone personally I dislike both of the medications very much but without prednisone I’d likely be on assisted breathing in the hospital and I really don’t want to find out how that life is just yet.
Using the medicinal marijuana also helps me to sleep but at the same time it makes me look like a criminal because you cannot get your card yet in New York. I will fight tooth and claw to get one asap when they’re available because I don’t look at marijuana as fun it’s medicine just like my opiates not a toy or a recreational drug to be joked around with. I’ve smoked daily for so long I don’t really get “high” anymore smoking for me is like taking a tylenol for a normal person but remember my body is also under extreme stress of fighting 4 or 5 chronic illnesses that are all incurable and going through chemotherapy so I need that extra boost to help me eat and sleep. I just really hope in the future people don’t judge me for that I mean I hate using the stuff daily but I am forced to by my illness, my only breaks are when I am in the hospital I am not an addict so I’ve never had trouble stopping and never crave it.
So I say to you all sleep is a gift get it while you can. I remember what sleep is supposed to feel like and I want that feeling back someday, the feeling of good restful sleep. I know I can get it back by working with my psychologist and learning to rest my anxiety about all of this but I am not quite there yet. Right now I am venting through writing obviously and it feels good to yalk to my audience on a true and honest level perhaps I will post early morning rants more often on the necessity of sleep in life. People who get 8-10 hours I find are typically much happier in general than those that are up all night and live on caffeine. Anyway you have the right to choose how you live so don’t think I’m demanding anything or directing you to try anything, you live how you like to I am merely pointing out a way in which you may find more comfort in this life of ours. I hope you all have a pain free week and have a splendid day!