Well, it’s after 11am, and I just woke up…and don’t want to be up now. This is a regular occurance due to my chronic pain issues. Maybe I should just entitle this blog “A day in the life of a pain stricken woman” The pain is sometimes so intense…you can’t take a deep breath, you can’t move, you can’t even cry. That was last night. It feels very much like there is a knife in your belly just moving around cutting and jabbing at your innerds…alongside a blowtorch that is joining in on the fun. Then add to that the spasming of your intestines (mine are essentially glued together with adhesions, with strictures..makes food debris hard to travel through) I can actually put my hands on my belly and feel the spasms and rather violent peristalsis that is occurring…it feels remarkably like a baby moving around when you are pregnant.
On these many nights being on the pain rollercoaster, I try to read…if I can concentrate through the pain. Or surf the net trying to find pain control ideas. Or just lay and pray. Alot of praying. Trying to make “deals with God”…you know, like “Please God..just end the pain that I am in! If I am not doing any good on Earth, please just take me home with you!”…so far he hasn’t taken me up on that offer, so either he believes I am or will be of some good on this Earth. I try the meditation techniques…the deep breathing is hard because it hurts to take really deep breaths…but I do what I can. Visualization is nice…I picture laying on a warm sandy beach with the waves lapping at the shore, smelling the salty air, sipping a cold margarita, watching the tanned surfer dudesssssssssssss…uh ahmmmm….never mind….lol.
These nights of pain are very lonely. VERY lonely. I sometimes feel like I am the only person on the planet dealing with this suffering. I know of course that I am not, but at night it sure feels that way. I have friends on facebook and myspace who also suffer with various chronic pain conditions…and I thank God for them everyday! This is why the computer has become my lifeline in a sense…they are the only people I “know” who are like me. No one in my real world suffers with the intense pain that I do on a daily basis. Pain year after year changes you as a person. You have to live differently. You can’t always do what you want to do when you want to do it. You are a slave to your pain. You may want to go take a walk…but your body says “No way sweetie!”…you may want to go shopping, and you DO! Then about 20 minutes in your body goes “PUNISHMENT TIME!” and there you are, standing in the middle of WalMart with a cart of stuff and you suddenly can’t move due to the pain…so you stand there with this look of constipation, not moving…sweat breaks out…you begin to panic, wondering how you will manage to walk up to the registers and check out…or just ditch the cart and get to the car…I feel embarrassed…like others are staring at me…so anxiety kicks in, the adrenaline makes me move slowly to the register as if nothing is wrong with me…I check out and make it to my car and start to cry as I drive home…and cry all the way…not caring that the people in cars beside me can see.
On the days or nights when I am having a pity party…I feel like living with “Invisible Diseases” is very different from other ailments…If I have my legs amputated….people can see it and feel empathy…if you have cancer people KNOW what that means. But with Adhesions, Fibro, Antiphospholipid Syndrome, Neuropathy, tendinitis, plantar faciitis, hernias, degenerative disk disease, arthritis, migraines….people can’t SEE these illnesses…they may not even know of them…and when you are like me, who has ALL of those ailments (except plantar faciitis) you feel like a lonely little freakshow, that no one understands. I often get mad at God, I am ashamed to say…and I scream “Why me? Why do you hate me? Why so many health problems at once? “…I keep feeling there is a reason for all this physical suffering….and I am on the path to figuring that out. I could deal with most of the issues…it’s the abdominal adhesions/neuromas and hernias that cause me the most horrible pain….but, my Grandma says, he wouldn’t let me deal with all this trauma if he didn’t think I could handle it…so he must REALLY have confidence in my inner strength! lol
I just dream of being normal again. Of being able to make plans with friends a few days in advance, and not having to cancel due to pain levels…you do that enough with friends, and they stop trying to make plans with you…lol. Tired of being asked “How you feelin today?”…because the way I feel rarely changes…although there are “tolerable days” “bad days” and “horrible days” so I guess I have a few to choose from. I wish I c ould eat a big juicy steak with corn on the cob! I wish I didn’t have to wear this stupid binder. I wish I didn’t have to swallow 11 pills or more every day. I wish I could be more active, without suffering afterwards. I wish my belly didn’t buldge out. I wish even SOME of the pain would go away!
I worry too about the consequences of taking all these meds I am on. I am only 42 years old…taking all these pills for the next 30 years isn’t gonna make my liver very happy…not to mention, my body will build up a tolerance to these pain meds…then what happens? I am on really strong doses already…what do we go to in 10 or 20 years? It’s these things and more that fill my mind at night. But, then its daylight again…I suck it up and pretend to be one of the “normals” and go on with life. There are people out there worse off than me for sure. Atleast I have a roof over my head, food to eat, family/friends, clothes, and this computer to keep me in touch with friends! With all this crap that I whine about, I do know that I have much to be thankful for and I thank God each and everyday for all of it. I guess my deal is, I just wish for a way to make others understand what people with invisible illnesses are dealing with…little daily activities that some take for granted…are a struggle for us…shaving your legs, getting in and out of the car, getting clothes in and out of the washer/dryer, standing and doing dishes, carrying a case of soda, going to the bathroom (yes I just told that), walking for more than 15 minutes, picking up small children/animals, reaching for something above your head, bending to pick up something off the floor, pushing a vacuum, dancing, just getting up from bed (I must roll onto my side and grab the rail to pull myself up), blowing your nose, sneezing, crying…and worst of all laughing. I love to laugh…and now when I do…it brings physical pain. I used to laugh until I cried…now I try to avoid that, because it hurts so much and feels like my belly will split in two. I miss sitting with my son watching stand up comediens on tv and laughing hysterically until we were crying and squealing like pigs unable to breathe! lol….I still laugh of course…and once in awhile even to the point of tears…but its painful.
I keep looking ahead though. The future is gonna be better. I learn ways of dealing with all of it. I know when to rest (mostly)…luckily I love to read and play on the puter! I don’t mind being a “homebody” for some people that would be unbearable. It sounds nuts, but one way I deal with all my ailments is this: In my mind, I have decided to think that God knows there is only one thing that I couldn’t bear at all, and that is for either of my children to be seriously ill…so I choose to think that He put all the illness on me, so my kids wouldn’t have any problems…and then I say Thank You God!
So, that’s how I will end this blog (other than the following quote)..is with THANK YOU GOD! Thank you for my life, my family/friends, my books and my computer! 😉 Even if no one reads my blog, that’s okay..it feels good to get things out of my head!
Surrender comes when you no longer ask, “Why is this happening to me?” Acceptance of the unacceptable is the greatest source of grace in this world.
PS) Thank you to those who are reading! Some people keep their lives private…I obviously don’t have that need…I am what I am and I am not ashamed or embarrassed.