Some days it's just the pain. Today, if it weren't for the pins and needles rushing through my finger and toes, I wonder if I would know I was even awake. Some days you just feel empty, drained, completely nonexistent. I have no idea why. I just know it when it happens.
Last night, the arthritis in my toes kept me awake until almost 2 am. I work at seven. You can imagine the amount of sleep I have had. At some point, you have to medicate yourself just to go to bed. Which makes it worse when you try to get up and become the functional person you are required to be for the day. Go to work, go through the motions of a capable human being, doing your job the correct way, not wanting to put your head down at your work station, and just give in to it all. It's the hardest thing I do some days. Not giving in.
Your skin is the largest organ of the human body. And ours, as scleroderma patients, hates us. It attacks us at every turn. People laugh when they come to my home at the sheer volume of lotion that they find throughout the rooms there. Two bottles on my coffee table. Lines of them waiting for me in the bathroom. One on my end table in my bedroom. And forget about my purse. When someone asks me if I have any lotion, I just laugh to myself, and say "of course," and pull out the less severe brand to avoid strange looks. I think, right now, I have four different brands accompanying me in my bag.
People find it odd that I hate washing my hands in public. I hate the feeling of that tightening afterward when the water constricts my skin. They don't understand. I have to have lotion immediately or I just simply will not wash my hands. Dishes, ugh. Literally makes my stomach turn because of the feeling of my hands when I am done. My fingers want to pop through my skin and run away. And the greatest struggle of all...a bath. God I love to take a bath. Over a shower any day. For those of us with aching joints or muscles, we know the soothing pleasure of a hot bath. If I just get into a hot bath, with no amenities, it hurts. It seriously gives me pain. I feel like I am being stabbed to death with needles now and I don't know why. I cannot relax in a normal bath anymore. I have to have oils in my bath to relax my skin. I assume the heat is tightening my skin further and it is causing me pain. I have found that argon oil and lavender are the greatest relief so far. Mixing the two of those in a bath for me, creates a spa like feeling I could succumb to for days.
An even greater benefit from this is, the oils saturate your skin to the point that you don't need lotion, or as much, when you get out of the bath. I often wonder if my grandmother had similar issues because she used baby oil when she got out of the bath 100% of the time. Could she have had skin tightening issues that sought no relief from lotions or salves? It drove me crazy because everything in the bathroom was covered in oil, now it seems comical, as I think about slipping in my own tub from the sheer saturation of it all in my own life. It's funny when you come to an understanding too late.
I always thought she did it because it helped her tan better. But now I wonder.
Oils aren't something to take lightly though. If this is something that someone wants to consider implementing into their own lives or daily regimen, I seriously suggestion research! Each differ in quality, consistency, toxicity potential and concentration. Some cannot even be applied topically in a safe manner. Make sure you're not just buying on a whim and applying directly to your skin. Don't just go to Amazon and order a bunch of oils to use. A couple of place that I have used and trust are The Body Shop and Whole Foods. Everything is organic and they don't test on animals. If you find cheap oils, stay clear. Cheap is never good when it comes to an oil. They aren't cheap to make, so they're not going to be cheap to buy, unless the quality is very poor.
I assure you though, when it comes to your skin, the largest organ of your body, and the one which is attacking us on a regular basis, it is worth it. And when I say, not cheap, I mean, a 5ml bottle of lavender oil is going to run you about $10-15. You use about 5 drops in a bath, 10 in a large diffuser if you're wanting to use it for relaxation methods. Argon oil is less expensive. You can get a large bottle of it for about the same price. And it has multiple purposes as well. You can wash with it, use it in your hair, on your skin, or just relax in a nice bubble bath of the oil if you run it under the water. Ahh, I definitely know I am alive them. It has seriously been one of my favorite finds since I have been diagnosed.
I strongly encourage you to find what works for you. I know there are natural remedies to sooth your body as there are mine. I have found so much more success in alternative therapies than I have in traditional medicines over the years and have been very happy with the results. At my desk today, I have a reed diffuser which currently holds eucalyptus for stress relief, and as always, there is a bottle of lavender oil in my drawer, never too far away, when I need to decompress.
While I haven't yet found anything to alleviate the pins and needles sensation in my hands and feet, I also haven't stopped looking. Medications have been prescribed, of course, but I don't rely on that as a solution. I love a good pillow elevation when I'm at home. A heating pad is always close by. But when you wear steel toed boots to work, and type all day long, you exacerbate your symptoms to a point of no return it seems. My shoes are often off my feet under my desk, toes cracking away, space heater on high. The twisting and aching of my joints lets me know to keep going, there's a solution ahead somewhere, we just have to find it.
But inside, I'm tired. I think to myself, it's been twelve years. I was a child, it seems, when this all started. I was just out of graduate school and I knew nothing of the world. This became my world. I'm so tired from searching for answers. I'm so tired of looking for the relief of it all. The struggle is so intense sometimes that it is how I know I am alive. Because I wonder if I want to be. I wonder if the battle will ever be worth it. I'll never lose hope. But sometimes I'm just too tired to try.
Last night, the arthritis in my toes kept me awake until almost 2 am. I work at seven. You can imagine the amount of sleep I have had. At some point, you have to medicate yourself just to go to bed. Which makes it worse when you try to get up and become the functional person you are required to be for the day. Go to work, go through the motions of a capable human being, doing your job the correct way, not wanting to put your head down at your work station, and just give in to it all. It's the hardest thing I do some days. Not giving in.
Your skin is the largest organ of the human body. And ours, as scleroderma patients, hates us. It attacks us at every turn. People laugh when they come to my home at the sheer volume of lotion that they find throughout the rooms there. Two bottles on my coffee table. Lines of them waiting for me in the bathroom. One on my end table in my bedroom. And forget about my purse. When someone asks me if I have any lotion, I just laugh to myself, and say "of course," and pull out the less severe brand to avoid strange looks. I think, right now, I have four different brands accompanying me in my bag.
People find it odd that I hate washing my hands in public. I hate the feeling of that tightening afterward when the water constricts my skin. They don't understand. I have to have lotion immediately or I just simply will not wash my hands. Dishes, ugh. Literally makes my stomach turn because of the feeling of my hands when I am done. My fingers want to pop through my skin and run away. And the greatest struggle of all...a bath. God I love to take a bath. Over a shower any day. For those of us with aching joints or muscles, we know the soothing pleasure of a hot bath. If I just get into a hot bath, with no amenities, it hurts. It seriously gives me pain. I feel like I am being stabbed to death with needles now and I don't know why. I cannot relax in a normal bath anymore. I have to have oils in my bath to relax my skin. I assume the heat is tightening my skin further and it is causing me pain. I have found that argon oil and lavender are the greatest relief so far. Mixing the two of those in a bath for me, creates a spa like feeling I could succumb to for days.
An even greater benefit from this is, the oils saturate your skin to the point that you don't need lotion, or as much, when you get out of the bath. I often wonder if my grandmother had similar issues because she used baby oil when she got out of the bath 100% of the time. Could she have had skin tightening issues that sought no relief from lotions or salves? It drove me crazy because everything in the bathroom was covered in oil, now it seems comical, as I think about slipping in my own tub from the sheer saturation of it all in my own life. It's funny when you come to an understanding too late.
I always thought she did it because it helped her tan better. But now I wonder.
Oils aren't something to take lightly though. If this is something that someone wants to consider implementing into their own lives or daily regimen, I seriously suggestion research! Each differ in quality, consistency, toxicity potential and concentration. Some cannot even be applied topically in a safe manner. Make sure you're not just buying on a whim and applying directly to your skin. Don't just go to Amazon and order a bunch of oils to use. A couple of place that I have used and trust are The Body Shop and Whole Foods. Everything is organic and they don't test on animals. If you find cheap oils, stay clear. Cheap is never good when it comes to an oil. They aren't cheap to make, so they're not going to be cheap to buy, unless the quality is very poor.
I assure you though, when it comes to your skin, the largest organ of your body, and the one which is attacking us on a regular basis, it is worth it. And when I say, not cheap, I mean, a 5ml bottle of lavender oil is going to run you about $10-15. You use about 5 drops in a bath, 10 in a large diffuser if you're wanting to use it for relaxation methods. Argon oil is less expensive. You can get a large bottle of it for about the same price. And it has multiple purposes as well. You can wash with it, use it in your hair, on your skin, or just relax in a nice bubble bath of the oil if you run it under the water. Ahh, I definitely know I am alive them. It has seriously been one of my favorite finds since I have been diagnosed.
I strongly encourage you to find what works for you. I know there are natural remedies to sooth your body as there are mine. I have found so much more success in alternative therapies than I have in traditional medicines over the years and have been very happy with the results. At my desk today, I have a reed diffuser which currently holds eucalyptus for stress relief, and as always, there is a bottle of lavender oil in my drawer, never too far away, when I need to decompress.
While I haven't yet found anything to alleviate the pins and needles sensation in my hands and feet, I also haven't stopped looking. Medications have been prescribed, of course, but I don't rely on that as a solution. I love a good pillow elevation when I'm at home. A heating pad is always close by. But when you wear steel toed boots to work, and type all day long, you exacerbate your symptoms to a point of no return it seems. My shoes are often off my feet under my desk, toes cracking away, space heater on high. The twisting and aching of my joints lets me know to keep going, there's a solution ahead somewhere, we just have to find it.
But inside, I'm tired. I think to myself, it's been twelve years. I was a child, it seems, when this all started. I was just out of graduate school and I knew nothing of the world. This became my world. I'm so tired from searching for answers. I'm so tired of looking for the relief of it all. The struggle is so intense sometimes that it is how I know I am alive. Because I wonder if I want to be. I wonder if the battle will ever be worth it. I'll never lose hope. But sometimes I'm just too tired to try.
❤️
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