Being disabled with an invisible illness is a daily job.
The first caveat upon waking is self inventory. How did you sleep? What is your pain level? How much energy do you have? What is the weather? What clothes are going to work best today?
Some of these questions are the same ones healthy people ask themselves certainly. But to the person with Syringomyelia, with Chiari, with Ehlers Danlos, with MS…. The person with the disease or disability which you can’t see, its different.
We may be up all night with pain or discomfort. Personally mine is blindingly painful cramps and spasms in my legs, low back and feet. Think about the absolute worst cramp you have ever had. Now imagine having it happen for an entire night, everyday, for the rest of your life. And because everyone has “helpful” advice I will cut you/off right now, yes I take potassium, magnesium, calcium, and drink water.
So I make it through the night. I wake up and take stock of my body. Do I have head pain? Can I use my hands? Can I stand up? Can I walk? How far can I walk? Do I need my cane? Can I grip my cane? We run through the check list while simultaneously checking the weather (Barometric and temperature forecast) while mentally creating my clothing choices. Its going to rain, the Barometric pressure is going to go up, and I am taking the bus. Leggings, skirt, soft socks, shelf bra tank, another tank, a light sleeved shirt, and a hoodie and a scarf. Probably need a cane, should pack my HEPA facemask because jerks who think vaping is harmless? Noise cancelling headphones, sunglasses, and spare drugs? Check.
Once we go thru this inventory we can get up and start the physical work of the day. Firstly is the Yoga and stretching, just so I am able to sit down on the toilet. Then is the taking of the drugs and supplements. Add in caffeine and food, unless I am fighting massive nausea or have trunk pain, or difficulty swallowing. Somehow you get calories into your shambling carcass, put on clothes and start your day.
You would think all this preparation would enable you to get through a day without too much issue. Yet halfway through your work day, there is a sudden violent temperature drop that is a surprise to everyone. But not to you! You started randomly dropping things and tripping on level ground an hour ago. You are the amazing human weather vane!
The very act of ordering a coffee feels like you are trying to recite the Pythagorean theorem to the barista. You push, you rally, you struggle thru to the end of your shift. You somehow manage to safely get home, and change into soft clothing. You try to sit down to rest. But life is calling. Your spouse is texting saying they need your help. Your dog is staring at you whining to go potty. There are more dishes in your sink than in your cupboard, and you have not gotten to the grocery store in two weeks.
So even though you desperately need to stop and sit your ass down, life goes on, and needs you to make food happen.
You manage to go to the store, you really want to use your parking pass, but are pretty sure you would burst into tears when people either say something slick to you, or just openly scowl.
You remember the endless litany; “But you don’t look sick!”
So you park in Egypt. Take a cart and walk what feels like miles, to pick up fast, easy, and affordable foodstuffs. You try to eat as healthy as possible. But between a 300 insurance premium, and 120 a month in medical costs, sometimes throwing in a handful of peas with ramen noodles is a feat.
You get out, get home, and lie in your car until you feel like maybe you can get upstairs without taking (another) header.
You eat, you rest a little, you maybe have energy to shower. Then suddenly and firmly your body is completely spent and no amount of caffeine, cajoling or empty promises of massages will push you any further. Cat boxes will remain unscooped, dishes will stay unwashed, and the hair on yoour legs will begin to rival a Bear. You choose to let the dog out and take your meds with your final push. Then lie down to relax.
You go on social media and post that today was difficult. Your friends who have been on this ride with you send hearts and sad faces. But inevitably you get that one well meaning “My cousin has a gardener who uses hand harvested pink himalayan sea salt to gargle and he got rid of his Lupus! Have you tried that?”
You close your eyes, and count to 10, and refrain from telling them to go douche with Kale. History has taught you that they truly think their information is helpful. Conversely you realize that many people are unaware of just how many things, how much research, and how many ideas we have compiled in our job of being chronically ill.
Most of our doctors can’t even pronounce our illness. Or the ones who feign to treat us have used google and wikipedia to compile a treatment plan. If you are lucky enough to have a doctor who either truly knows your condition, or one that respects your knowledge and wants to work WITH you to figure out a management plan. Congratulations, you have found the golden ticket, tip your nurses, and thank Glob. Unfortunately, many people think being chronically ill is a lifestyle choice born from laziness or mental health issues. But honestly, you would have to be batshit bonkers to want to feel this way.
You scroll past the advice and pinned articles you are tagged in. You see a good friend posting a picture of themselves hanging out with all your other friends. You suddenly feel a deep profound sense of sadness. They know how sick you can get, and how you are often strapped for cash. They decided to not even invite you to their outing.
There is no malice or unkindness on their part. One of them even says “WE MISSED YOU!” when you like the post. You have grown to accept that people will decide that to keep asking you to do things, when they see how sick you are, is hard for them. You accept it, but it still chokes you up a little. You are grateful you have friends who continue to invite you places, even if you have to decline. Sometimes just knowing you are wanted, is so soothing.
You have finally run out of steam completely and know if you don’t get up and wash your face and brush your teeth now, it won’t happen.
You set up your go bag for the next day. Feed your companions, write your “to do” for the next day. You check the weather again, thunderstorms. You get up and put three anti inflammatory pills and an anti nausea pill next to the cup of water by your bed and turn off the light.
Tomorrow you will start it all over again. Waging another battle against the invisible foe that has taken over your body.
Monday, April 09, 2018
Being disabled with an invisible illness is a daily job.
Saturday, April 15, 2017
3 cups puffed kashi seven grain cereal 123 c 18 p
1 cup bulgar 22 c 1 p
2 cups solid gold wee bits holistic dog food 20 c 56 p
1/4 cup flax seeds 2 c 1 p
1/2 cup raw sunflower seeds 9 c 9 p
1/2 cup raw pumkin seeds 9 c 9 p
1 cup oat cheerios (organic sugar free) 17 c 2 p
8 1/4 cups total
25 carbs per cup 11.9 protein per cup
6.25 carbs per 1/4 cup serving 2.9 protein per 1/4 cup serving
Kashi Ingredients: puffed: Red Wheat, Oats, Barley, Rye Berries, Buckwheat, Sesame Seeds.
Solid Gold Wee Bits Holistic Ingredients: Ocean Whitefish, brown -rice, oatmeal, egg, bran,barley, salmon oil, tomato, flax, carrots, parsley, apple, cranberries, blueberries, lettuce, celery, beets, watercress, spinach, chicory, broccoli, mint, kelp, thyme, red lentils, acidophilus, multivitamin blend.
Tuesday, June 07, 2016
Garnier Fructis Curl Nourish
So I got the shampoo, conditioner and curl stretch loosening pudding.
All of these are sulphate free.
My hair is course, wavy, and currently purple!
So I recieved the sample from samplesource.com
I began by washing the legnth of my hair. I have a deathhawk and so the sides and back are shaved and not colored.
The shampoo was thick, only foamed slightly and had a faint unremarkable scent.
I liked how it cleaned my hair but didnt strip the color and left my hair feeling clean but not stripped.
Then I used the Curl Nourish conditioner. It was thick, creamy and absorbed into my hair quickly. It was easy to rinse out and left my hair feeling soft.
I didnt get a chance to try the Curl Stretch Loosening Pudding. I like to shower at night and let it dry slowly.
Overall I give the Shampoo 4 out of 5 stars. It was good for the money but not extraordinary.
The Conditioner also 5 out 5 it was pretty great and for the money I may actually buy it when I am out of conditioner.
I will update on how the Curl Stretch Loosening Pudding.
You can read about the products here!
Sunday, June 05, 2016
So recently I got a three part of the Avalon organics Vitamin C Intense Defense line. I got the cleansing milk, hydrating oil, and spf 10.
First the Vitamin C Instense Defense Cleansing Milk:
Good texture, nice smell, did NOT do a good job taking off my makeup. I used this with a warm washcloth and still needed to use micellar water to get my skin completely clean. Also if you have sensitive skin be careful. I got in my eye and it burned!
Second Vitamin C Intense Defense Hydrating Oil:
I was hesitant to use this. I usually only use camelia oil mixed with sugar. This oil took a long time to absorb...I ended up leaving it on while I took a shower. After the shower the oil was absorbed and I went to sleep. Woke up with no oil residue on my face and face was hydrated and soft.
Then I used the last step. Avalon Organics Vitamin C Intense Defense Hydrating spf 10...
It smelled loke the cleansing milk...maybe a little over moisurizing. The fact that it was spf 10 made me hesitant to use because I have always heard spf 15 was the minimum needed to protect the skin. After a full day my skin feels soft but it was rainy and overcast so I dont know how much protection it was.
These products are available on amazon prices ranging $7.49 for the Intense Defence Cleansing Milk, $18.23 for Intense Defense Antioxidant oil, and !15.53 for Intense Defense Spf 10 (whaaat?!)
None of these products are extraordinary. I would rate them 5 out of 10 only be ause they are Vegan, have no sulfates, parabens or pthalates, and are not tested on animals.
I may end up trying the Avalon Intense Defense Vitamin C cleansing gel..but with this price range it would have to have rave reviews. Instead I am sticking with my trusty neutrogena and cerave.
Thursday, June 02, 2016
Monday, March 28, 2016
So after getting up early, wading thru insurance, disability, doctors, and bills I managed to clean two giant drawers, purge expired meds, food, and makeup and get a load of laundry done. So no surprise it's 2 am and my back and legs are a cramping aching ball of misery.
Cue a hot shower and me giving my hair the middle finger, I swear I a going to shave my head. I go to take a drink with my handful of ibuprophen and seltzer EXPLODES in the bathroom. I am soaked, floor is soaked.
My cramping, thirsty over tired ass is ready to punch a wall.
There is a lesson kids, even adults need supervision.
Sunday, March 27, 2016
Only at 1:30 am does my brain get flooded with thoughts.
My doc note expires in a few days.
I can't go back to work until I can handle 25 to 30 hours a week. But normally it will be more. I know I can't do that yet. My job is not sitting. It's working out with adults, taking them to jobs sites and helping them do their jobs.
I barely manage to do needed daily stuff here, get the mail and shower.
I think I am going to have to take until next month to get my back fully healed. I can't reinjure on the job and I can't afford to loose my benefits...so close to work insurance...so...close...
All this has me anxious and scared. Not wanting to baby this but also not wanting to push and mess myself up worse.
I'll call doctors tomorrow and get new appointments after I argue with insurance because they don't want to pay for specialists.