30 Things About My Invisible Illness You May Not Know
1. The illnesses I live with are chronic migraine, fibromyalgia, spinal stenosis, degenerative facet joint disease and disc protrusion, carpal tunnel syndrome, arthritis, depression and anxiety.
2. I was diagnosed with them over several years, beginning in 1986 with Migraine. The most recent diagnosis was the spinal stenosis and disc protrusion this past May.
3. But I had symptoms since I was a toddler.
4. The biggest adjustment I've had to make is the transition from relying on Western medicine to treat my illnesses to switching to the care of a naturopathic doctor and using nutrition to help reduce pain and inflammation.
5. Most people assume that I am a normal functioning adult and that I am able to participate in life like the average person. However, many simple tasks, movements, and activities cause and/or aggravate pain. Most people also see me as being strong, but I have tremendous difficulty finding the mental strength to endure so many physical limitations.
6. The hardest part about mornings are the morning headaches and waking up to get the kids off to school. I have a hard time getting motivated and moving and I want to stay in bed all day. I now make sure to get out of the bed, get dressed and be more active.
7. My favorite medical TV show is Grey's Anatomy.
8. A gadget I couldn't live without is my iPhone. It keeps me connected to my chronic pain family.
9. The hardest part about nights are not being able to shut my brain off, especially when my stress levels and anxieties are high. It impedes on the amount of restful sleep I get and causes insomnia. Also, sometimes the pain from the bulging disc makes it difficult to sleep because my entire right side from the hip down to my ankle is hurting all night.
10. Each day I take no pills (pain medication only when needed) & depending on the protocol my naturopath has me on, a variety of herbal and botanical supplements. (No comments, please)
11. Regarding alternative treatments I have tried acupuncture, pain management classes, acupressure, and chiropractic adjustments. Currently, I use massage therapy, physical therapy, homeopathic remedies and treatments.
12. If I had to choose between an invisible illness or visible I would choose neither. Having a chronic illness or disease, whether visible or not, is not a walk in the park.
13. Regarding working and career, I wish that I was able to sustain a job so I could contribute more financially. I feel extreme guilt that the responsibility lies solely on my husband. Due to my severe anxiety, low self-esteem and confidence I find it difficult to find something I can do that will bring in more money. Currently, I receive Social Security Disability, but it's not enough to ease our financial burdens.
14. People would be surprised to know that I do suffer from low self-esteem, have a lack of confidence, and can't seem to figure out what my purpose is and where I fit in the world. I have been through so much that I feel beaten down and demotivated most of the time.
15. The hardest thing to accept about my new reality has been the change in my body. I gained a lot of weight due to a medication I was taking as a migraine preventative. I am also an emotional eater, so I overate a lot when I was going through episodes of depression due to the chronic pain. I still struggle with losing the weight and adding more physical activity to my daily routine. I have become very sedentary and I need to change that. Finding the motivation, desire and willpower to do it has been a struggle.
16. Something I never thought I could do with my illness that I did was become an advocate for chronic pain and migraine awareness.
17. The commercials about my illness are mostly offensive to me. I don't care for any of the Excedrin commercials.
18. Something I really miss doing since I was diagnosed is ballet, especially with my back issues.
19. It was really hard to have to give up the ideal I had for what my life would be like. I never thought that I would have multiple chronic pain conditions, limiting my ability to work or enjoy life in the way I would like to.
20. A new hobby I have taken up since my diagnosis is juicing. Once a week, I juice green fruits and vegetables to help keep me on the right path nutritionally. I feel a sense of accomplishment when I see my mason jars full of green in the fridge!
21. If I could have one day of feeling normal again I would be able to enjoy whatever I am doing without pain stifling me.
22. My illness has taught me how to be more patient and to appreciate the small things.
23. Want to know a secret? One thing people say that gets under my skin is that they know someone who had migraines that took "xyz", is cured, and that I should try it.
24. But I love it when people don't push remedies on me and instead respect my journey and that I know what is best for me.
25. My favorite motto, scripture, quote that gets me through tough times is a quote by Mother Teresa. “I know God won't give me anything I can't handle. I just wish he didn't trust me so much.”
26. When someone is diagnosed I'd like to tell them to hold on to hope. Things may seem like it's at its worst, but a diagnosis isn't a death sentence. There is still life to live, even though it may be drastically different than what you are used to.
27. Something that has surprised me about living with an illness is that I have managed to keep persevering and moving forward, despite the many setbacks and hardships brought on by illness.
28. The nicest thing someone did for me when I wasn't feeling well was bring a homecooked meal over for my family.
29. I'm involved with Invisible Illness Week because it's very important to me to bring awareness and visibility to the millions afflicted with invisible illnesses.
30. The fact that you read this list makes me feel validated and VISIBLE!
2. I was diagnosed with them over several years, beginning in 1986 with Migraine. The most recent diagnosis was the spinal stenosis and disc protrusion this past May.
3. But I had symptoms since I was a toddler.
4. The biggest adjustment I've had to make is the transition from relying on Western medicine to treat my illnesses to switching to the care of a naturopathic doctor and using nutrition to help reduce pain and inflammation.
5. Most people assume that I am a normal functioning adult and that I am able to participate in life like the average person. However, many simple tasks, movements, and activities cause and/or aggravate pain. Most people also see me as being strong, but I have tremendous difficulty finding the mental strength to endure so many physical limitations.
6. The hardest part about mornings are the morning headaches and waking up to get the kids off to school. I have a hard time getting motivated and moving and I want to stay in bed all day. I now make sure to get out of the bed, get dressed and be more active.
7. My favorite medical TV show is Grey's Anatomy.
8. A gadget I couldn't live without is my iPhone. It keeps me connected to my chronic pain family.
9. The hardest part about nights are not being able to shut my brain off, especially when my stress levels and anxieties are high. It impedes on the amount of restful sleep I get and causes insomnia. Also, sometimes the pain from the bulging disc makes it difficult to sleep because my entire right side from the hip down to my ankle is hurting all night.
10. Each day I take no pills (pain medication only when needed) & depending on the protocol my naturopath has me on, a variety of herbal and botanical supplements. (No comments, please)
11. Regarding alternative treatments I have tried acupuncture, pain management classes, acupressure, and chiropractic adjustments. Currently, I use massage therapy, physical therapy, homeopathic remedies and treatments.
12. If I had to choose between an invisible illness or visible I would choose neither. Having a chronic illness or disease, whether visible or not, is not a walk in the park.
13. Regarding working and career, I wish that I was able to sustain a job so I could contribute more financially. I feel extreme guilt that the responsibility lies solely on my husband. Due to my severe anxiety, low self-esteem and confidence I find it difficult to find something I can do that will bring in more money. Currently, I receive Social Security Disability, but it's not enough to ease our financial burdens.
14. People would be surprised to know that I do suffer from low self-esteem, have a lack of confidence, and can't seem to figure out what my purpose is and where I fit in the world. I have been through so much that I feel beaten down and demotivated most of the time.
15. The hardest thing to accept about my new reality has been the change in my body. I gained a lot of weight due to a medication I was taking as a migraine preventative. I am also an emotional eater, so I overate a lot when I was going through episodes of depression due to the chronic pain. I still struggle with losing the weight and adding more physical activity to my daily routine. I have become very sedentary and I need to change that. Finding the motivation, desire and willpower to do it has been a struggle.
16. Something I never thought I could do with my illness that I did was become an advocate for chronic pain and migraine awareness.
17. The commercials about my illness are mostly offensive to me. I don't care for any of the Excedrin commercials.
18. Something I really miss doing since I was diagnosed is ballet, especially with my back issues.
19. It was really hard to have to give up the ideal I had for what my life would be like. I never thought that I would have multiple chronic pain conditions, limiting my ability to work or enjoy life in the way I would like to.
20. A new hobby I have taken up since my diagnosis is juicing. Once a week, I juice green fruits and vegetables to help keep me on the right path nutritionally. I feel a sense of accomplishment when I see my mason jars full of green in the fridge!
21. If I could have one day of feeling normal again I would be able to enjoy whatever I am doing without pain stifling me.
22. My illness has taught me how to be more patient and to appreciate the small things.
23. Want to know a secret? One thing people say that gets under my skin is that they know someone who had migraines that took "xyz", is cured, and that I should try it.
24. But I love it when people don't push remedies on me and instead respect my journey and that I know what is best for me.
25. My favorite motto, scripture, quote that gets me through tough times is a quote by Mother Teresa. “I know God won't give me anything I can't handle. I just wish he didn't trust me so much.”
26. When someone is diagnosed I'd like to tell them to hold on to hope. Things may seem like it's at its worst, but a diagnosis isn't a death sentence. There is still life to live, even though it may be drastically different than what you are used to.
27. Something that has surprised me about living with an illness is that I have managed to keep persevering and moving forward, despite the many setbacks and hardships brought on by illness.
28. The nicest thing someone did for me when I wasn't feeling well was bring a homecooked meal over for my family.
29. I'm involved with Invisible Illness Week because it's very important to me to bring awareness and visibility to the millions afflicted with invisible illnesses.
30. The fact that you read this list makes me feel validated and VISIBLE!
WOW! I thought I was writing about myself. The pain journey is a tough one, all right. Thank you for sharing these personal thoughts with us. I'm just preparing to leave work after working all day, and everyone is so excited about the weekend. They should know better, I tell myself, then to ask me what fun things I have planned for the weekend. Ha. I will drive the 10 miles home, perhaps make a quick stop at a small store for some weekend food, but I probably won't because I am too tired and in too much pain. If just my feet would stop hurting for a bit to get me through that trauma of a little shopping. No, I will go home, but gosh, I need to pick up/drop off clothes at the cleaners because I only have 2 pair of pants that fit me having gained 30 pounds at only 5 feet tall and hate myself for that, and can no longer work enough hours to be able to buy anything new. No, I will go straight home, throw my clothes on the floor, grab a Diet Pepsi, crawl into bed, crank on the television...thank God I can still pay the cable bill...and remain there until 10:30 Saturday morning when a little boy comes for his piano lesson. At 11:30 I will go back to bed and this time stay until another "Chronic" Monday morning when, because I didn't save $$$ in my younger days, I must once again drag myself back to the office at 67 years old, having had 24 surgeries and 3 prolonged hospital stays in the past 30 years. I'm too tired and in too much pain to want to do anything except go to bed. I live alone so at least no one bothers me, but it would sure to nice to have someone to see a movie with or go for a walk with. But I don't, so in bed I shall remain and try like hell not to think about all those pills I could swallow, but won't do that...at least not yet. You have yourself a nice weekend and thanks again for sharing. It really made an impact on me. You are very brave.
ReplyDeleteThank you for taking the time to read my post. I appreciate your kind words. The pain journey is a tough one indeed, and no one's path is easier than the next person's. Whether we have families to take care of or just ourselves, getting through the rigors of daily life is much more difficult to navigate than our healthy counterparts. Having to manage a job while in chronic pain is very hard and I commend you for getting through each day like a champ! You are also very brave because you continue to push through even though you'd rather lie in bed (something I'd rather do instead too). I hope you enjoyed your weekend, even if it was spent in bed. Take care.
DeleteHi! Just wanted to say that you're 30 Things Meme really spoke to me. You juggle so much-- my hat goes off to you. I liked the quote from Mother Teresa you used: “I know God won't give me anything I can't handle. I just wish he didn't trust me so much.” I feel like that a lot too. Sending good thoughts your way!
ReplyDeleteHello Nora and thank you for reading my post! That quote by Mother Teresa is my Rosetta Stone! I feel extremely burdened by what life has thrown onto me, but I must be built in a way that allows me to endure it, although I do crash and burn sometimes. I hope that you had a nice weekend and that you are fairing well this week. Take care!
DeleteWith the help of these things one can treat migraine very easily.
ReplyDelete