Daily Living with Chronic Illness

As some of you are aware, I have a host of chronic, but, mostly invisible illnesses. Living day to day with this and being consistent in interacting with the world at large is often quite difficult. This is why I have a hard time posting on a consistent basis. I don’t care to share very often about it because there are so many people with serious issues that are so much worse. And I don’t care to appear as a whiner or attention seeking.

However, when I discover a way to get something done efficiently that would generally take a great deal out of me, I just have to share. I want others to be able to get “normal” things done that won’t take up their energy and do them in for the day. We’re talking “Spoon Theory” vs Shaving our legs! Today, I managed to shave my legs from the ankle to the knee. I did not have to struggle through a shower shave. Nor did I have to do a tub scrub afterwards!

First, let’s talk about that wonderful coconut oil! I have been using it for just about everything under the sun for the past year or so. It works brilliantly for someone such as myself with very sensitive skin. I use it for everything from oil pulling to bathing and shaving. The drawback to shaving with coconut oil is that it usually will clog your razor and make a mess of you tub/shower which then requires a scrub down. As someone with a disease of this caliber, I cannot possibly manage to wash and condition my hair, shave my legs and scrub the tub in the same day. Unless, that’s all I’m doing for the day. Like, literally ALL that I am doing. No meals cooked, no laundry done, no toys picked up. Heck, I’d be lucky to make it down the stairs with my 2 year old twins in tow. That just isn’t happening for me.coconut-oil

So, here’s what I did today: I went ahead and did my bathing and all of that good stuff. But, I really wanted to shave my legs. I knew that I simply didn’t have enough energy to manage it. So, I went ahead and finished up my routine with my morning all over coconut oil application. Then, I gathered my razor, a cup of steaming hot water and my towel. I lay down on my bed to rest a few moments and then began to shave my legs, on the bed, using the hot water to swish the razor vigorously to unclog it from the oil/stubble combination. I was able to lie back and rest at will. And although it took a little longer, it did take a lot less energy. I was able to simply lie down and nap directly after finishing up. I woke up rested with silky smooth legs. It was a win for me today.

shaving-legs

I know that the average person may not appreciate the seriousness of this post. But, to those who are chronically ill and fatigued, this could be quite helpful. I, personally, struggle with the desire to be a “normal” woman. The kind that always has smooth legs and dinner on the table. Alas, I often have to settle for getting clothes on and making it downstairs before noon. So, anything that will help me to feel normal without expending so much energy that it causes a flare up is, to me, a wonderful thing! God bless all my Sister Spoonies.

spoon-theory

Much Love,

Angie

 

 

 

 

Monday Blues

Barely 1:00PM on Monday afternoon and I’m already done in. With so much more to do, entertaining the idea of a nap seems ludicrous. Something I haven’t shared yet is that I suffer from several inflammatory disorders. I live with chronic pain and a foggy brain. I have fibromyalgia which is the least of my problems. I also have Rheumatoid Arthritis, diabetes and this lovely little gift called Behcet’s Syndrome. Normally I try to live my life as if I am perfectly healthy. I try to take my medications on time and eat a balanced diet. But, other than that, I try to proceed as if I were an average homemaker. Unfortunately for me, I do have to stop in the middle of most days to nap or at least lie down for a while. I am blessed to be a stay at home Mom/ wife. I have a great husband. He wants me to maintain my health as much as possible. He is not concerned about my poor housekeeping or lousy dinners as long as I have time for him when he gets home from work. He is amazing. So, as the little guys slip off to dream land this nappy time, I gobble down a quick lunch of leftovers and gulp down a nice cool glass of water, kick off my shoes and pull the covers over my head. I am blessed.

Yes, I did just take a siesta in the middle of my blog. I can’t sleep all day, though. I do have things that I need to do in order to keep my own sanity. I think about other people in the world who live with the same health issues I have. Some are in really great shape. They work full time. They’re faithful to the gym. They have a sparkling clean home and serve up three good meals each day for their families. Why is it that they can manage all that and I’m down for the count by 1:00pm?

Anyway, I never did get to sleep. But, I did rest for a while. I have a lot of pain in my hands lately. I always have pain. But, this is more than average. I blame it on the weather. Hot, Cold, Hot, Cold…so forth and so on. I’m also experiencing quite a bit of pain in my mouth. It’s difficult to distinguish if it’s a toothache, sinus inflammation, or the Behcet’s raring it’s ugly head with a canker coming up along my gum line. Last month, I had a trail of them going down my throat. If you think you’ve ever had a sore throat… I bit my lip yesterday. That’s sure to turn into something miserable. I’ve already bitten the same spot twice since then due to the swelling. This post may seem gross to some readers. But, hey, this is real life. Those of you who like to write horror should look into auto immune disorders. You would certainly learn some scary things about how the human body treats itself. I feel like a baby teething right now. I want something to chew on that will ease the pain. But, like yesterday, it goes as quickly as it comes sometimes. Yesterday I felt the pain for hours on end. Then, I noticed it had disappeared; only to torture me today. I know there are people out in the world with much worse problems. But, this is what I am living right now. And truthfully, other peoples’ horrible situations may put my misery into perspective; that’s the reason I rarely complain aloud. But, their situations don’t make mine suck any less.

I’m done with being self absorbed for the day. It’s 2:30. The twins are waking from their naps and I have plenty to do for my family. A bright spot to this afternoon is that we are having Bible Study tonight instead of Wednesday night. So, I will enjoy the company of good friends and good food. As well as, different perspectives on the Word of the Lord. Always a blessing!

Yes, I am a professing Christian. It may be hard to believe if you have read some of previous posts. But, one thing the world needs to know about true believers. We are not perfect and never claim to be. We’re real people living real lives. We just want to be like Christ as much as we can in our finite humanity. And we want to be with Him when this world passes away. But, Christianity is a deep and rich subject that is owed it’s own post on another day. Maybe this week I can do a special post regarding Easter vs Ishtar. That is a pretty deep well. In the meantime, I will see you all tomorrow when, hopefully, I will be able to think straight. God Bless and Good night~Monday 2