When a chronic illness interrupts work


4 min read
01 Feb
01Feb

I always debated if I would share my rheumatoid arthritis diagnosis with clients and customers when I was first diagnosed in 2018. I was finally relieved to have a name to the pain I've had since high school but then it brought a ton of questions and concerns. I was finding it difficult to get on ladders or standing for long as well as just being exhausted. But I felt like my clients needed to know I wasn't forgetting things on purpose or not able to completely perform my job. I didn't want to give excuses but give an actual reason. I'm an open book so I didn't feel like hiding. But I also didn't want to be judged for my diagnosis. I didn't want to turn customers away thinking they couldn't count on me. I give 110% for my work and am really hard on myself if something doesn't go right so I didn't want customers and clients to think "oh she's sick so she's not reliable". But in the end I realized I would rather share my diagnosis and not be afraid then to hide it like I did something wrong. I didn't cause it, I don't look sick, there is no cure and I does affect every aspect of my life. 

Last week was an exhausting week and my RA has made it's presence known. It started with the cold weather changing back and forth. That obviously does not help my joints. It makes me swell and feel achy. I'm constantly cold and the cold makes me hurt more. Stress is also a big factor in my pain. With more stress it causes more inflammation which causes more pain. Last week I took on the task of helping decorate for Easton's 1st grade music program. I really wanted to help because 1. I did stage design in high school and love being creative. 2. I didn't get to decorate for last year's music program because we went to Kansas the one day they decorated. and 3. the theme was Texas and I got to make a few cowboy things that I did in honor of my dad who was a cowboy. So I spent almost all of Monday up at the school decorating then Tuesday and Wednesday I was up there for a few hours. I also had 3 orders I had to work on. I didn't have a huge rush on them but I wanted to get them shipped off quickly. To add to it, I've also been helping Easton sell Girl Scout Cookies. She's 36 boxes away from her new goal of 300 so I've been busy posting about selling, ordering more cookies, pick up and delivering cookies. It is a lot of work on its own but add in everything else and I'm stressed. 

I also have this horrible infection in my middle finger on my left hand that has been around at least 2 weeks. It started as a hangnail I pulled and it has gotten worse over time. I had a second hangnail on my ring finger on my left hand so I pulled it and then it quickly was infected as well. I kept thinking okay it isn't that bad and it will be gone in a few days. My doctor checked it out last week and said soak it, lather it in ointment and bandage it so I did. But it only got worse over the weekend. It feels like someone is shoving something up under the nail. It doesn't help that I stabbed myself with an exacto knife on my middle finger while cutting cardboard last week. The pain and the green prompted me to go to the doctor Monday because even though I have an appointment Tuesday I felt I really needed to be seen. The pain is now up my arm to my elbow, I can hardly bend my finger, I can't make a fist and I now have infection on other fingers on my right hand. I had to cancel my injection because of this. The doctor said oh yea you should have gotten antibiotics last week and gave me an oral antibiotic, a cream and a pain med because the infection is making all of my joints swell. The last 2 days I've felt exhausted and sick. I had to get a tetnis shot because I don't remember how long it has been since my last one but probably not in the last 2 years so since I cut myself with the knife there is a concern. At Tuesdays appointment the doctor said she could tell it was getting better but I still had a lot of pain. The pain meds make me sick to my stomach but it is so much better than the joint pain I feel. 

I've also been stressed lately because 2 weeks ago I did some blood tests to kind of get a road map of my health at this point and if I need to be concerned about anything. Since both my parents passed away young, my mom at 50 and my dad at 61 there are some concerns genetically for me. I've been reaching out to family members about specific factors and the biggest two right now is high blood pressure and a gene mutation in blood clotting. My dad tested positive for the gene mutation as well as his brother and since my dad died of a pulmonary embolism due to blood clots in his legs and my uncle has blood clots there is a risk I could have it. If I do then I may need to just take a baby aspirin for the rest of my life and just watch for blood clots. Or it could be more serious and I would have to go on blood thinners and there is no cure. Since I didn't have any issues when I had my daughters there is a chance I don't even have it but I need to be sure. Also the risk of high blood pressure is very high. My mom died of a heart attack and stroke, her mother died of a stroke, my dad had high blood pressure, my mom's brother and sister both have it, my dad's younger brother has it, my paternal grandfather died of a heart attack as well as my paternal great grandmother. And the list goes on. In the past I have had issues with my blood pressure and I take it very serious because my mom didn't always take hers seriously. 

And one more thing to add to the stress is my husband traveling a lot this month. He's out of town for 3 weeks out of 4. He's home on the weekends so it isn't like he's gone that whole time but it does make it challenging when he's either out of town or out of state while I'm sick and trying to take care of 2 girls by myself plus the pets. This week he's in Wisconsin, next week he'll be in Austin, the week after he'll be home all week and then he flies to Florida the last week in February. He's stressed about work and I worry about him traveling. My dad worked on the rail road and that is a whole different kind of stress when he was gone and never knew what his schedule was. I knew I would never marry a railroader because I couldn't handle that life. I also couldn't be a military wife. The stress would kill me. So I should be thankful that my husband is usually only gone 3 to 5 days a week for a trip and then he's right back home. But it stressful because once we start getting into the routine of him being gone he's back and throws everything out of order. Then it takes a few days to get into a new order and before you know it he's gone again. It is hard on the kids also. Again I shouldn't complain because it isn't half as bad as a railroader or military life but it does put strain on a marriage. 

So back to what I was saying about chronic illness...

It is hard for me to slow down even when I'm sick. My mind still races with ideas, to do lists and feeling like no matter how I feel I still have to be doing something. I don't want to let down my customers so I'll push myself to the extreme to get an order done or get something done for someone because I don't want to disappoint. But I'm only hurting myself and setting myself up for failure. Because of the infection in my fingers and the inflammation I was struggling to type anything. I was having a hard time sewing even with the machine. I needed to sleep and relax but I felt like I had to work. I took last Friday off as a mental health day because of the stress and still couldn't stop myself from working. But if I don't put my health first, I really am going to do damage to myself. So I do a little work then I rest then get back to work. I write down all of my ideas instead of jumping right into them so I can remember them but not get started on something then either exhaust myself or get distracted. If customers and clients don't understand that is okay. Not everyone will understand that I need to take breaks and that I have to be cautious. My husband still doesn't understand. Because I don't look sick and I keep pushing myself even when in pain no one can see what I'm hiding. I don't expect everyone to get it. And that is okay. It is also okay for me to say no. I have to continue to learn to say no and not take on projects that take time away from what is important and to stop being a people pleaser. If I need a break I need to take a break. I'm working on that. Both my parents rarely showed they were in pain or sick. They worked through all of it and never complained. Even when my mom was having a heart attack she didn't want to leave work and just kept saying she didn't feel well but she was fine and didn't need to go to the hospital. I've got to learn from her that you need to ask for help and recognize when something is wrong. She didn't know she was having a heart attack.