You know how one singular day can seem really long? Like you are sitting (or standing) at work and you can’t wait for the day to end? Every minute feels like an hour and every hour feels like a day… the struggle to get through the day is so hard that you wonder to yourself, “How many days like this can I possibly endure?”. My days have felt like that a lot since the beginning of the year. It’s crazy how long this stupid flare has gone on. It’s dumb, the word “flare” doesn’t even define what has been going. In the dictionary, the words used to define flare lead one to believe it’s sudden but quick… a bright light used to bring attention. Well, I’m sure all of you are well aware, the attention part is definitely correct. No way you could ignore this shit. Bright light? Not so much. Although I imagine inside my body there’s a bright light at the points where all the pain hits in my muscles and nerves. I must look like a Christmas tree inside… before Santa drops off all the wonderful gifts. Sudden but quick? Not in the least. My mom asked me the other day about being in remission. I never thought about that word, I’ve only associated that with cancer. Again, the words in the dictionary used to define that word are, “a period of time during a serious illness when the patient’s health improves“. It is fitting, but it would feel strange to use it. Although, right now I’d be ecstatic to apply that definition to myself!
Yesterday my husband and I shared our 21st wedding anniversary together… our 29th year together. A year ago, on our 20th wedding anniversary we celebrated it in the hospital. That was the day I had surgery. One I hope never to have again. But it makes me think. Time seems to go by so slow most days, while a year ago seems like only yesterday. Time is a funny thing, in one moment it can feel like it will never pass while only a moment later it feels like it’s going at warp speed. It reminds me that I need to do a much better job of living in the moment. Not worry about later today or tomorrow or ten years from now. Make the most of right now.
Our anniversary celebration didn’t go at all like we planned. We were going to go watch the sunset on the coast, enjoy some good food and maybe go for a walk along the beach. Sounds wonderful. Afternoons and evenings are the hardest for me so although I felt pretty good in the morning, by afternoon I could barely walk. So we ate in and watched TV. When I apologized to my husband later in the evening, he was not very happy with me. He constantly reminds me that what I am going through is not forever, it’s just a moment in time. We’ve had decades together and so many wonderful memories… he knows that this too shall pass and we will again be walking along the beach. I am so blessed to have this man in my life.
Which leads me to another topic. I was asked recently to contribute to a medical magazine (the kind you see while waiting at the doctor’s office) and one of the questions I was asked is how Fibromyalgia has affected me… as you can imagine, I am definitely most affected by my lack of independence. I rely on my husband for everything. He’s amazing. He takes care of everything… he cooks all the meals, keeps the house clean, makes sure the kids have everything they need and he makes sure I enjoy life. He makes me laugh every day and he supports all my trial and errors in the hopes something will ease the pain. He’s amazing. I have a lot of respect for those of you that are on your own or in a relationship where you don’t have the support you need. One of my biggest worries is what I would do if I were on my own… but right now… in this moment… I just don’t have the energy to figure that out and more important I just said two paragraphs ago I need to make the most of right now. Damn… bad habits are hard to break!
I woke up this morning feeling so blessed. I say this a lot, but I don’t think it’s possible to say it too much. Keep the folks around you that love and support you. Get rid of any negativity. It’s hard enough without having people bring you down or bring drama into your life. I believe what keeps me going is that I know, no matter what, I am loved. I have hit the lowest lows in the past few months, I have questioned my reason to live when it feels like every day is so hard… I have gone into that dark place. When I hit rock bottom I find so many reasons to end the pain… but I only need one reason to keep going. Love. That’s when I see the light shining through the darkness. Don’t let the pain and frustration take away all the moments of love and laughter you will have in your future. It’s there… it may seem out of reach at times but sometimes it’s right in front of you and all you need to do is look up.
I wish you a pain-free day and a day I hope is filled with love and laughter!
Hey thanks a ton for the article… really helpful insight.
Fibromyalgia has been effecting my sleep cycle like crazy. There usually no sleep, plenty nights have been just pure hellish. How do you suggesting coping with this. i have been using a few pills at times but I would want some other way than having to pop pills every time a need a good sleep.
Recently i was reading a report on sleep targeted treatment. Can you give me some insight of your own on it.
Article reported so “Women are much more affected by fibromyalgia than men and the prevalence of the pain disorder is roughly three to five percent in the general population. Alternative studies have found that insomnia, nocturnal awakening and fatigue are common symptoms of fibromyalgia, but it has long been unknown if sleep problems could increase the risk of fibromyalgia.
The researchers examined women participants in a large health study, which included questionnaires and clinical examination. The researchers focused on 12,350 women free of musculoskeletal pain and movement disorders.
Dr. Paul Mork said, “Our findings indicate a strong association between sleep disturbance and fibromyalgia risk in adult women. We found a dose-response relation, where women who often reported sleep problems had a greater risk of fibromyalgia than those who never experienced sleep problems.”
The researchers suggest additional research is required to better understand the association between fibromyalgia and sleep disorders.”
Hi there –
I agree 100% that there is a link between sleep issues and Fibromyalgia. I tend to stay away from prescribed sleep medications unless I am in a lot of pain… I haven’t had much success with them. I think what happens with me is that when I am not physically active enough during the day… and I’m mentally stressed/exhausted… this combination is not good. I tend to have insomnia during these times.
I know there is a drug being tested right now to address your exact issues. I don’t think it will be out for another year or two… basically it will help relax your muscles and put you in a deeper sleep so you wake up more refreshed. I look forward to trying this one.
I combat insomnia by staying away from caffeine… trying to calm my body/mind and not eating too late. Honestly, I don’t get very many restful nights myself. I have accepted that it’s just another part of dealing with my medical conditions.
I wish I could be of more help! If you find a solution that works for you, please come back and share it. I will do the same.
Thank you so much for taking the time to comment, I really appreciate it.
Hi Tamiko, your post made me tear up. I thought about my own parents. My dad has stayed by my mom’s side even during her worst days, and they are still madly in love with each other. I am so happy to know that love like this exists, and I can only hope for that in my own life. Congratulations and Happy Anniversary!
Thank you so much!!
Dear Tamiko, my mom and I have together had fibro a total of forty years. We are Mostly Pain Free. Fibromyalgia only limits my lifestyle when I am extremely tired. And I’m a full time night shift nurse for thirty years with a small farm to manage, plus went thru two terrible divorces with kids…you get the idea. Mom (who’s 80 and walks miles every day) and I take lots of antioxidants. We avoid iron supplements, soda, excess refined foods and sugar.I get my antioxidants mostly at Wal-Mart. Turmeric, acai berry, folic acid, vitamin C and E, grape seed extract, pycnogenol, there are lots to choose from.-I rotate thru 3 pillboxes so I take different ones daily, When I stopped my supplements the pain gradually returned with a vengeance. When I ‘re-started the supplements, I WAS PAIN FREE in less than a week, and I remain well-controlled. My doctor is begging me to start a fibro support group because i do so well. I pray this information helps you. Laura R.N.
Dear Laura –
Thank you so much for sharing this information, I would really love to get the list of supplements you take and how you take them. This is great information and I love that it sounds affordable.
I agree with your doctor! With your background (both professional and personal) – starting a support group would benefit a lot of folks!
Hey there. I’ve just come across your blog. I did a search and your were the most interesting. I suffer Fibromyalgia accompanied with several other issues, so I know pain. More than I’d like to. Your words inspire me. It sounds life you’ve got a pretty harsh Case of fibro. My sincerest condolences. I was diagnosed th three years back and have been on chronic pain for 19 years. Migraines have been my library standing ailment. Then I got a crushed vertebra, broken pelvis, had three insanely horrid pregnancies, the last of which ended 25 weeks and damn near killed us both. Unfortunately, pain is my most reliable constant. That’s an incredibly depressing statement. Anyways, it’s comforting to know some one else can really understand me. I’m glad I found you. God works in the best mysterious ways.
I am so sorry to hear the amount of pain you are in and all the issues you have faced. It must seem overwhelming a lot of times, but there is good in all the bad. I do agree God works in mysterious ways… the fact you took the time to share what’s going on with you… you are helping others realize they are not alone in their pain. In addition, it sounds like although you had a horrible pregnancy – you did end up with the miracle of life.
I also had a pretty challenging pregnancy with my first child and my doctor still calls him a miracle baby.
I wish you all the best in 2016 and sincerely hope that you will have better days, less pain and joy.
Hello Tamiko! Thank you for your blog and for this post. I too suffer from fibromyalgia and the relentlessness of chronic pain is just awful. I have probably had fibro for 10 years or so, but was diagnosed about 8 years ago. I kept hoping I would have some kind of remission. I hear that happens… I haven’t been that fortunate, yet. I won’t give up hope for that, but I’m also trying to do a better job of accepting my condition. Denial didn’t work ;) I also have recently had a recurrence of depression. What keeps me going are my loving husband, the best dog in the world, my family and friends, and enjoying moments despite the pain and fatigue. Most of my happiest times are with those friends and family and/or being in nature. Sitting by a lake, exploring a new dirt road I’ve never been down before, looking out over a valley from high on a mountain…. On really tough days in the office, sometimes I just look out the window and watch the wind moving in the tree branches and somehow that helps remind me that this life is worth living. I’ve also added an antidepressant and counseling back into the mix for now. I’m also trying to turn my pain into something that can help others. That’s something you’re doing so well with this blog. Your shares make me feel understood and less alone. It’s much appreciated. I hope you get some relief and I look forward to reading more of your story.
You are so blessed to have the support and love surrounding you. We definitely need that! I live in Denial sometimes, it’s not my favorite vacation spot. I keep taking it off my list of places to go, but somehow I end up there every once in awhile. :) Sitting by a lake sounds like heaven to me. I have the ocean, which I’d never give up… but I don’t know if you watch the series Cedar Cove – but you made me think of that place. My daughter and I want us all to move to Cedar Cove… this make believe spot where the setting is so beautiful on the lake and everyone is so nice. :) The fact that you are still working in an office is amazing. I’ve been fortunate enough to work from home… otherwise I don’t think I’d be able to do it.
Thank you so much for taking the time to leave me a comment. It really means a lot.
Keep thinking positive and laugh as much as you can!
It’s so wonderful that your husband is so supportive! Great post
Thank you so much!