Don’t give up

chronic illness is not always what you see

chronic illness is not always what you see

 

When is enough… enough?

 

 

it's not just the moments you see... we don't show what seems like TMI or might come across as attention seeking; especially when we are used to the medical world telling us we are liars, crazy, drug seeking, faking it, weak, and other horrid things.

it’s not just the moments you see… we don’t show what seems like TMI or might come across as attention seeking; especially when we are used to the medical world telling us we are liars, crazy, drug seeking, faking it, weak, and other horrid things.

I had a Multiple Sleep Latency Test for narcolepsy on the 19th and 20th. I spent the night before on my couch with my head propped on top of a cushion… breathing slowly in and out the cool fresh air that gently wafted in from the open window; Medication slowly setting in. Then I awoke early to help my daughter get ready for school before her bus would arrive. After her bus drove away, I plodded over to the couch again. So tired but I needed to get things done before my MSLT that evening. So I lay on the couch, still wearing my winter down coat and bear-paw (ugg-like) boots as I called my chiropractor. After leaving a message asking them to call me back if they could squeeze me in that day… they were not open yet but luckily they called me back by 9a.m. to let me know they could fit me in around noon. With a sigh of relief i hung up my phone… laid down on the couch with my Tom-cat on my chest. Out like a light until 11:30 a.m. My eyes popped open and I thought, “OH NO! What time is it?!” as I had forgotten to set an alarm to wake me up. Thankful it was not noon or later, i jumped off the couch and sprinted to the garage and got in my car. I made my appointment in time and boy I am glad I did. My neck was out in several places again! This sometimes happens multiple times a week less times in a month. Either way, my chiropractor and his staff have seen me enough times to know how i will look if it’s really bad. They have seen me waltz in happy and feeling good but a little achy to being carried in and whimpering as my skull feels like it is caving in. I got in and out within 15 minutes and let them know my MSLT was that night…. fingers crossed for some enlightening results!

Off I went to run a few errands (like actually picking up my mail… bills… more bills… and credit card offers usually… not so exciting when you know you’ll owe the hospital for the rest of your earthly years). Then I went home and did my best to not fall asleep again. After a bit I made stew for supper and waited for my husband and kiddo to get home from their long days. When they did we enjoyed a little family time and had supper together. Then I packed up my bag for my 24 hour MSLT and headed out by 7p.m.

11825653_10155980402945565_120936634850416948_n

I stopped off at a local store and grabbed some dried fruit to have at my MSLT and then a few things to bring to my mom. My mom had gotten sick and needed some things brought to her at home and I honestly wanted to stop by and just sit with her before I went to the sleep clinic. My mom is a strong lady and has always been there to show me just how strong we ladies can be. She eased my nerves and off I went to the sleep clinic by 830pm. I arrived and was glad to see the same tech that i had the previous time. He would be there for the full 24 hours of the test with me. After chatting he put all the wires (electrodes) where they needed to be, he said, “OK! Good night!” and out went the lights. I lay there wondering how long it would take me to fall asleep… wondering if I would sleep really good or if the night terrors would occur. It is not easy when you experience things that seem insane at home in privacy… but if they are stealing your health from you…. you get to a point where you pray they show up while you are being tested lol Soooo of course my phantoms did not appear and I slept the whole night. The tech told me I slept without a lot of limb movement and breathing was great… but I would startle and wake momentarily and fall back to sleep… a LOT. He said, “Every time that happens… it’s like somebody tapping you on the shoulder all night. This resets your clock EVERY time. So no wonder you are so tired!” Unfortunately though it took me on average 16 minutes to fall asleep out of the 20 minutes they provide for each of the daytime naps. A typical narcoleptic falls asleep in under 5 minutes during these daytime naps for a MSLT. So despite my blood testing positive for the narcolepsy allele…. this probably will mean that I am not a narcoleptic. SO what has similar symptoms (minus cataplexy) to narcolepsy but one cannot fall asleep so quickly? That is my question. Maybe it is hypersomnia? I don’t know… but what I do know is it is possibly a huge part of my life-long illnesses. Cancer at age 8… to C.V.S. and chronic migraines etc. at age 29.

e9b136726282444c54bf2925c800474627b9284aa95917c26f91e020f9e7a219

It is truly difficult to remain up-beat about things when you spend a majority of your time trying to prove your illness to doctors and even others looking in from the outside. Trying to find a way to get tests ran, find a doctor who will approve testing, friends and family who will help you when you cannot take care of your own life, and courage to just keep surviving. Invisible-chronic-illness is extremely hard to live with… you lose out on a lot of your life. You lose friends… and sometimes you lose family. You feel locked up in your own home with some invisible electric fence ready to zap you if you go too far or for too long. Some might think being disabled is a lucky break; but you couldn’t be more wrong. I don’t have a job that pays me a dime. I live feeling like all I am is an expense to my family. They have to live with me…. the good and the bad…. always. They love me through it and are why I am still here today… fighting to see the light through it all.

I find it incredibly boring to be too tired to stay up during the whole day or even part of it…. i find it tedious to try and stay busy when all I have the energy for is netflix and hulu. BUT ย I am pretty grateful when I do find a sweet show or movie to dull the endless minutes of my life pretending things are just fantabulous ๐Ÿ˜‰

5616d4208be17e30a417b182938be6b8

Since working away from home… even for only a couple of days has landed me in the e.r. (even once i take abortive medications) I resigned to trying to work from home. I thought, “You are a published freaking author! Get with it and be successful using your words!” thus my attempt to blog and to keep up with the whole social media presence that I am supposed to be doing (i did sign a contract…. thankfully they understand)……………and BAM! Even doing that can be hard. When you feel like you have no life a majority of the time…. it is a little hard to be inspired. I try to raise awareness for CVS and Migraines and whatever else pops into my wee bubble of a life. But it doesn’t pay the bills and the debt down. So I have been adding, ‘work from home’ to my search criteria instead of just pouring over medical studies and the likes. Data entry pops up and looks inviting… so maybe I will find a legit job online doing some data entry. Heck! I know I can waste time toodling around online… why not get paid exerting the same amount of energy? ๐Ÿ™‚ SO we’ll see!

553231_10151920868205565_1006133842_nIn other awesome-sauce news………. none of you would know this but my wonderful dad has been battling HepC. He was finally approved to try the 90 day therapy that has been known to cure HepC patients. He told me recently that there was no sign of HepC in his recent labs and you know that is freaking AWESOME! If anyone in my little church bible study several years ago would have told me, “Ally, he will be cured soon. You just need to be still.” I would have cried and thought, “Shows how much you know about HepC!” So when I get really tired of being sick and tired……… all I have to do is look at my Dad <3

I hope that everyone who is struggling to get by and wonder if the pain is worth surviving… that they feel comforted to not be alone… that they hold onto their hopes… their dreams… and enjoy the fragmented moments that are good in life… even if all the people looking at you from the outside can see is ‘healthy’… just know there are many more of us who ‘look healthy’ too. Just keep breathing in and out. Just keep napping and enjoying the netflix/hulu shows and movies….. just keep praising God for the good, the bad, and all the stuff between. He sees you. He loves you. He has a divine purpose for you; even if it doesn’t feel that way.

12074942_10156183072165565_6003554031636774357_ned6870ff153183e51ee101303fec07d5

This entry was posted in Chronic Illness and Faith, health updates. Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *