Please...don't ask me to explain
It's been a REALLY rough couple of months. I need to have some sort of release...so here it is.
I have Fibromyalgia Syndrome (FMS). I have had it for the past 7 years. I also have chronic migraines. Let's add to the list, Hidradenitis suppurativa (HS), a skin disease, basically large boils in parts of the body that are mostly hidden. I would like to also add, due to these illnesses, I suffer from depression. I didn't ask for these burdens. I have battled with them for years and years. The older I get, (I'm 48), the worse my health gets. I get it, I'm no spring chicken anymore. I have changed from an extreme extrovert to almost a recluse. I have lost all of my friends, other than the usually following on Facebook. I don't see family as much as I used to. This isn't because I have cut everyone off, it's because others are able to continue living their lives, while mine, basically stands still.
I wake up each morning with a new outlook. Not your typical outlook; picking out clothes for work, where am I going to go for lunch, or counting the days until the next 3 day weekend. My outlook consist of how am I going to get a few things done. Washing dishes, vacuuming, doing laundry, posting invoices and checks for our business. On good days, I make it to the grocery store, mop and/or dust the house, or have family over to visit. I normally just stay in my pajamas. Wearing a bra constantly causes boils. I drink coffee most of the day and don't eat. My sedimentary lifestyle and the medications I take causes extreme weight gain. I have gained 60 lbs in 7 years. My husband and I don't go on vacation. We own our own business. Weekends are free and that's it. It's paycheck to paycheck. We basically pay the same amount for insurance as our mortgage, so there isn't a lot of cash left over to do anything anyways. We have 4 dogs. They are my refuge during the day. They watch over me, lick my tears and assure me everything is going to be okay when my husband isn't here.
The past couple of years, I have put aside my favorite things to do; photography, refinishing furniture, gardening, quilting. I no longer have the energy for it. Just imagine, you can no longer do the activities that brought you the most joy. The things you can turn to when you are having a bad day and just need to get away and forget your troubles.
I now crochet. I started when the Sandy Hook tragedy happened. The "22 acts of kindness" movement appeared. Crocheting was my way of doing what I could. I am proud to say I donate lovely hats to our local children's hospital. Last year I broke my record with 229 hats! I used to be active in our church, but due to attendance, it closed. Right after that, I was diagnosed with FMS.
Normal life ceased to exist that day. I thought I would go to the doctor and get some medicine and feel better in a few days. My husband went with me. I couldn't even drive. I am so glad he was there. He stays by my side through this whole mess. I couldn't ask for a better husband. He is my crutch.
There are days when I just don't think I will make it through, literally. When all three of these monsters attack my body at the same time, I sometimes wonder if it's even worth it. A few weeks ago, the weather started to change. That's hell on the body when you have FMS. This also triggered some normal allergies. You know, runny nose and drainage. My drainage got really bad and I coughed constantly. And there it was...a pulled muscle in my stomach from a massive coughing session. Coughing also puts even more stress and pain in the muscles, making your body feel like you have been beaten with a Louisville Slugger. In the meantime, a few family members called because they hadn't heard from me in a while. Although it probably wasn't meant that way, I felt like they were putting a guilt trip on me. "Why don't you come see us?" "Come on out to the house." Well, I don't know about you, but I'm a Generation X'er. We don't complain. We suck it up. We work even when we are sick and proud of it! We work hard for our money. We buy necessities and don't spend frivolously. This is how I was raised. So when someone asks, "How are you doing/feeling?", it's like a double edged sword. You are supposed to say, "Good, how 'bout yourself?" (That's an Okie thing) When deep down inside, you want to tell the truth and bore someone with your aches and pains. I tried that a few times. It didn't go over very well. The person I was telling was looking around for someone to save them. The most common response is, "Oh I know, my arthritis is starting to kick in with this cool weather." The response that hurt the most...I was chatting online with someone I see rarely. I was having a TERRIBLE week. (This was when I was first coming out of my shell and sharing my health problems that had abruptly changed my life.) Anyways, I wasn't rambling too bad, just stating my current condition. The person just stopped chatting. It was on Facebook and I could see that they were still online and posting things. I thought my heart would break into pieces. I had finally told the truth, and they didn't want to listen. So back into my shell I went. I have pretty much stayed there to this day. I already had a problem with rejection, so things like this don't help at all.
So.....if you are reading this and have any of the health problems I have, please know, you are not alone. There are many of us out here struggling with our lives being turned upside down and in constant pain. Hang in there. If you are reading this because you know someone with FMS, HS, or migraines...we need you in our lives! It doesn't help us when we feel forgotten. We already struggle with being a burden on those that count on us. There will be times when we want to vent and complain. There will be other times when we just need to know you are thinking of us and care.
I have Fibromyalgia Syndrome (FMS). I have had it for the past 7 years. I also have chronic migraines. Let's add to the list, Hidradenitis suppurativa (HS), a skin disease, basically large boils in parts of the body that are mostly hidden. I would like to also add, due to these illnesses, I suffer from depression. I didn't ask for these burdens. I have battled with them for years and years. The older I get, (I'm 48), the worse my health gets. I get it, I'm no spring chicken anymore. I have changed from an extreme extrovert to almost a recluse. I have lost all of my friends, other than the usually following on Facebook. I don't see family as much as I used to. This isn't because I have cut everyone off, it's because others are able to continue living their lives, while mine, basically stands still.
I wake up each morning with a new outlook. Not your typical outlook; picking out clothes for work, where am I going to go for lunch, or counting the days until the next 3 day weekend. My outlook consist of how am I going to get a few things done. Washing dishes, vacuuming, doing laundry, posting invoices and checks for our business. On good days, I make it to the grocery store, mop and/or dust the house, or have family over to visit. I normally just stay in my pajamas. Wearing a bra constantly causes boils. I drink coffee most of the day and don't eat. My sedimentary lifestyle and the medications I take causes extreme weight gain. I have gained 60 lbs in 7 years. My husband and I don't go on vacation. We own our own business. Weekends are free and that's it. It's paycheck to paycheck. We basically pay the same amount for insurance as our mortgage, so there isn't a lot of cash left over to do anything anyways. We have 4 dogs. They are my refuge during the day. They watch over me, lick my tears and assure me everything is going to be okay when my husband isn't here.
The past couple of years, I have put aside my favorite things to do; photography, refinishing furniture, gardening, quilting. I no longer have the energy for it. Just imagine, you can no longer do the activities that brought you the most joy. The things you can turn to when you are having a bad day and just need to get away and forget your troubles.
I now crochet. I started when the Sandy Hook tragedy happened. The "22 acts of kindness" movement appeared. Crocheting was my way of doing what I could. I am proud to say I donate lovely hats to our local children's hospital. Last year I broke my record with 229 hats! I used to be active in our church, but due to attendance, it closed. Right after that, I was diagnosed with FMS.
Normal life ceased to exist that day. I thought I would go to the doctor and get some medicine and feel better in a few days. My husband went with me. I couldn't even drive. I am so glad he was there. He stays by my side through this whole mess. I couldn't ask for a better husband. He is my crutch.
There are days when I just don't think I will make it through, literally. When all three of these monsters attack my body at the same time, I sometimes wonder if it's even worth it. A few weeks ago, the weather started to change. That's hell on the body when you have FMS. This also triggered some normal allergies. You know, runny nose and drainage. My drainage got really bad and I coughed constantly. And there it was...a pulled muscle in my stomach from a massive coughing session. Coughing also puts even more stress and pain in the muscles, making your body feel like you have been beaten with a Louisville Slugger. In the meantime, a few family members called because they hadn't heard from me in a while. Although it probably wasn't meant that way, I felt like they were putting a guilt trip on me. "Why don't you come see us?" "Come on out to the house." Well, I don't know about you, but I'm a Generation X'er. We don't complain. We suck it up. We work even when we are sick and proud of it! We work hard for our money. We buy necessities and don't spend frivolously. This is how I was raised. So when someone asks, "How are you doing/feeling?", it's like a double edged sword. You are supposed to say, "Good, how 'bout yourself?" (That's an Okie thing) When deep down inside, you want to tell the truth and bore someone with your aches and pains. I tried that a few times. It didn't go over very well. The person I was telling was looking around for someone to save them. The most common response is, "Oh I know, my arthritis is starting to kick in with this cool weather." The response that hurt the most...I was chatting online with someone I see rarely. I was having a TERRIBLE week. (This was when I was first coming out of my shell and sharing my health problems that had abruptly changed my life.) Anyways, I wasn't rambling too bad, just stating my current condition. The person just stopped chatting. It was on Facebook and I could see that they were still online and posting things. I thought my heart would break into pieces. I had finally told the truth, and they didn't want to listen. So back into my shell I went. I have pretty much stayed there to this day. I already had a problem with rejection, so things like this don't help at all.
So.....if you are reading this and have any of the health problems I have, please know, you are not alone. There are many of us out here struggling with our lives being turned upside down and in constant pain. Hang in there. If you are reading this because you know someone with FMS, HS, or migraines...we need you in our lives! It doesn't help us when we feel forgotten. We already struggle with being a burden on those that count on us. There will be times when we want to vent and complain. There will be other times when we just need to know you are thinking of us and care.
Comments
Post a Comment