In the beginning of December, I was lucky enough to go on a cruise to Central America. It was an early birthday gift from family. I went with my mother. I had a wonderful time both on and off the ship but I thought I would discuss the trip so that those of you who may not have cruised before can learn what it’s like to cruise while having fibromyalgia and then maybe I can offer some additional help to those of you who have cruised but struggled to participate in all that you wanted to due to your fibromyalgia.

     I feel like the easiest way for me to share this is in tips. For those of us that don’t like to read long pieces, or just want simple helpful hints, I think this is the best way to go. So, let’s get started.

     1. Before you even get on the ship, there is so much that we need to prepare beforehand. You need to make a list of everything that you could possibly need during the trip. This includes bringing things that help you daily with your fibromyalgia. So, on top of clothing, toiletries, sunscreen and the like, you should also remember your medicine and supplements if you take any, a cold pack (as many rooms have refrigerators but maybe not freezers), a heating pad, etc. Everything that you plan to pack should go on a list. I made it easy for myself by writing out the list and have two columns after the item, one saying “trip,” and the other one saying “home.”

     2. Within list making, it may be helpful for those of us that are foggy (which, admit it folks, is most of us) to really organize your list into categories. An added suggestion here is to, as much as you can, pack by category as well.

     3. I learned a lesson on my cruise - I didn’t pack enough clothing. My mother brought small packets of detergent with her but washing the clothes was actually  more of a hassle than a help. Make sure you have an outfit for each day of the trip. You can obviously wear bottoms (pants, shorts, skirts) with other tops but you’ll need a new top for each day.

     4. Many people bring just the amount of medicine needed for the trip but I bring my entire bottle in the case that we, G-d forbid, need to spend a couple more days after the trip due to travel delays. Bottles generally take up less space than pill organizers anyway.

     5. This one comes as a suggestion from MY coach. Be prepared to WALK a lot more than you are used to. Because being on my feet a lot can lead to a flare, my daily goal of walking is 3,000 steps. On each day of the trip, I walked between 8,000 and 12,000 steps and some of those days were days just on the ship. So, while you are doing all this walking and exercise that you are not necessarily used to, DO NOT forget to schedule BREAKS. On days at sea, I would walk around the ship with my mom but even during casual walks, I would ask to sit for a couple of minutes to just give my feet some relief and to keep from getting more fatigued. I worked hard to make sure that when we took a break, I had an opportunity to have my legs up.

     6. If walking is difficult for you, you can make arrangements with the cruise to have a wheelchair or scooter available for you throughout the trip. I saw many people of all ages using wheelchairs and scooters. The ship is very large and for some of us, it’s too much on our body to do that much walking. You need to figure out what is the best option for you.

     7. If you choose to book excursions (trips off the ship on days where you docked at another location), be aware that the excursion are listed by number and this number indicates a level of difficult, with one being the easiest and three being physically demanding. With the exception of one excursion, I chose only level one trips. In my experience, and keep in mind this is only one trip, there is a large difference between the levels. I chose a level two excursion for one day trip which emphasized minimal walking and I came back to the ship sore, swollen and exhausted. Obviously, you want to get the most out of your trip but not to the detriment of your body. Your health comes first.

      8. With all the food onboard, allow yourself to accept that you are going to eat more than you usually do and will probably make less healthy choices because you can. A friend told me to expect to gain two to five pounds even with the amount of activity you do. She was right. While I often chose the healthier meal options, I had more difficulty saying no to dessert than I do when I’m home.

      9. Preparing to go home. On the last night of the trip, you have the option to pack your suitcase up and leave it outside your stateroom for the staff to take down and then you can pick it/them up before you clear customs. If your suitcase is heavy or unwieldy, I highly recommend this option. Also, it will make your ability to leave the ship much easier as you aren’t dragging/carrying heavy things that could potentially cause a flare. So, use the checklist that you used to pack and put everything in your suitcase. Somethings you may not need to bring back so make a note stating that you threw it out on the ship. Place your checklist on the top of your suitcase and then you’ll be able to review it all when you get home.

      10. Lastly, and most importantly, HAVE FUN!!! Just because we live with a chronic illness and chronic pain daily does not mean that we lose our rights to enjoy life. With these tips, you can have a wonderful trip because you planned for these accommodations before you even got on the boat. Despite some minor setbacks of my own, I had an incredible time. I didn’t miss out on anything that I scheduled due to my fibromyalgia.

     This is just a simple list. I could have gone into more detail but honestly, I didn’t want you to feel overwhelmed by the list. If you have further questions, please feel free to drop me a line. I’m happy to schedule a session with you to talk about this or anything else that you might need help with related to your life with fibromyalgia and its co-morbid diagnoses. I look forward to hearing from you soon! Happy cruising! =)

     This post was originally written in April 2015. However, a reminder came up on Facebook where I shared this post from my personal blog site and I felt that it might help others living with fibromyalgia to express what they struggle with on a daily basis. Please feel free to share AS LONG AS you give me CREDIT.

​Dear mother, father, sister, brother, cousin, aunt, uncle, grandmother, grandfather, son, daughter, friend, co-worker,

     In speaking to a close friend recently, I realize that this letter isn’t just important, but crucial. Fibromyalgia awareness day is May 12th, so this letter cannot come sooner. I need to share some important information: Chronic pain is not a choice, it’s not enjoyable, and it’s not faked. Whether it’s LYME, Rheumatoid Arthritis, Multiple Sclerosis, Fibromyalgia, Myofascial Pain Syndrome, Lupus or any of the other disorders and diseases that cause chronic pain. According to the Mayo Clinic: “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals”.

     We are not looking for pity, and for those that are lucky enough not to deal with chronic pain, we don’t even require understanding. What we do ask for is respect. Respect that our pain is real, that the side effects of our pain and the medications we take for our pain are real.

     “How are you?” is a loaded question. Do you want the answer that is given so that you don’t have to hear the whole *sordid* story; or, do you really want to know how we are doing? Because, we, as chronic pain sufferers, are phenomenal actors and actresses. I believe we should win awards for our “I am fine” answer. When we talk to others who suffer from chronic pain, we ask about each other and give a number from 1-10, in terms of level of pain, with 1 being low and 10 being out of control. I’ve been lucky to have some friends catch onto that and ask me with the rating.  I guess what we want you to know is that our fine is usually different from your fine. Chronic pain means just that. Hardly a day goes by without some level of pain; however, we do have some days that are better than others. But, just because we “look good”, doesn’t mean we are ready to tackle a marathon or swim from Cuba to Florida (as one fellow fibromite made news – a clear exception to the rule – my mother is waiting for my turn to do the swim – just for clarification, I’ve NEVER been a good swimmer). Some of us are lucky enough to deal with low pain, and some of us are in so much pain, we require aids to help us walk (i.e. canes, walkers, wheelchairs).

     Pain affects every functioning part of your body: physical, emotional, psychological, and sensorial. It affects your sleep, often causing disordered sleep. Some can’t seem to get enough sleep and some actually aren’t getting enough sleep. It causes depression and anxiety. It affects all five senses. Because you are in persistent pain, it’s difficult to exercise, whether it be gentle movement or anything at all, on some days. It affects your ability to focus. For me, to be able to sit still is nearly impossible. If I’m watching TV, I’m also playing a game on my computer and texting with a friend. If I am reading, sometimes I need to re-read a paragraph over and over again. Some of us lose time. I am not referring to blackouts, per se; however, for me, I will stare off for what seems like moments and its 20-30 minutes later. We can be forgetful and have what’s called “brain fog”. It literally feels like there is haze around your thoughts. It’s as if you have to wade through pea soup to be able to complete simple tasks. Honestly, sometimes I would prefer the pain to the fog. Up until a few years ago, people were fascinated by my ability to remember things. My long term memory still stands strong; however, my short term memory has become quite weak. I try to play puzzle and quiz games to strengthen this present weakness.

     My chronic pain diagnoses are fibromyalgia and chronic fatigue syndrome. Interestingly enough, these are two disorders that my father researched over 30 years ago. There are many overlapping characteristics that fall within these two disorders. I am lucky and grateful that I have had a friend introduce me to support groups (all online) which in turn have brought me more friends that *get* me. It’s nice to be understood in that respect.

     So, I am open, as are most of my friends, in talking about our chronic pain disorders. Please feel free to ask me any question you’d like about either of these two disorders. I can tell you how I feel, and if I don’t have answers for other questions you might have, I have places to direct you, including (but not a comprehensive list): Mayo Clinic, National Institutes of Health, and National Fibromyalgia and Chronic Pain Association. Just please understand that chronic pain illnesses are often thought of as “invisible illnesses” because you can’t see visible reason for the pain. This doesn’t mean we aren’t hurting. So, the next time you see someone that you know has a chronic pain disorder, or you see someone walking out of a car in a disabled parking spot with seemingly no difficulty, please don’t judge. Don’t assume. And for goodness sakes, please don’t ever say, “But, you don’t look sick.”

Sincerely yours,

Kate

     Y’all know what I’m referring to when I talk about using my spoons, right? This is an important concept for anyone living with a chronic illness to know about. It’s especially important to use to explain to someone who does not live with chronic illness. In the case that you didn’t know about it, Christine Miserandino developed The Spoon Theory. 

     So, on Sunday, I had a lot planned. That was my first mistake. I knew I had to leave the house at quarter to four to pick someone up to go to a late afternoon concert. Before that, I wanted to fold my clean laundry that hadn’t been folded yet, do the laundry that had piled up from last week, clean the kitchen and living room, shower, and get ready for the concert. That’s a lot of spoons, people! Yet somehow my fibro addled brain thought I could get it all done.

     HA! That morning, I woke up with my alarm. And, while I got a decent night’s sleep, my only focus was to figure out when I could get back into bed. I try not to make a habit of napping daily but there are just some days where whether or not you do nap, you aren’t going to get as much done because you’ll be thinking about how sleepy you are, how much you need that nap, and your productivity level will drop. So, I decided to not do the laundry. I still had clothes I could wear - plus, it was SO cold outside, I couldn’t imagine getting out of my snuggie unless it was into a warm bed. 

     Change of plans - no laundry but nap was needed. So, I ate a hearty and healthy breakfast (I think, as I don’t really remember) and crawled back under the warm covers. I napped for an hour and a half (or so), and got up. I chose to start with the least difficult of the tasks and tackled my living room. It took a short time, just picking some things up to throw away and do a quick vacuum and swiffer. Easy enough, right? NOPE. I think I woke up with some of my daily allotted spoons already missing and after this “simple” task? Boom - spoons gone! I still had to shower and get ready for the concert. All other plans were pushed to the curb. I don’t know about you, but for me, sometimes showers invigorate me and sometimes they exhausted me. On Sunday, it was the latter. 

     After showering, getting dressed, doing my hair and makeup, I was done for the day. But, the day wasn’t done. I had been counting down the days for this concert and despite my exhaustion and pain creeping up, I was NOT going to miss it. So, I went to pick up my friend, waited in line to get our seats and sat down. As soon as I sat down, I felt my body just go slack. I had pushed it too far. Thankfully, this wasn’t a concert where there is a lot of standing up, sitting down and dancing, so I could sit quietly and enjoy the show. I was just worried that not only had I used up my spoons for Sunday, but for Monday as well. And, while most hate ending their weekend, Monday is one of my favorite days as I get to spend a couple of hours with some super cute babies. By the time the concert was over (which was amazing by the way - I sang every song along with them), all I wanted to do was to go home and crawl into my pajamas and get ready for bed. But, I had to drop my friend off, come home and make some semblance of dinner, and then get ready for bed at my regularly scheduled time. As the night wore on, I started to notice even more so that my body and mind were deteriorating with all I expected myself to do - and I hadn’t even done half of it.

     I’m not berating myself at all, but I knew my list of things to do was too much for this fibro body to handle. My coach, and friend, once said to me, “somethings are flare worthy,” meaning that sometimes you have to be prepared for whatever may come to you fibro wise in order to do something you really want to do. She’s right. The concert was flare worthy. But, I am blessed to have a flexible schedule so that if I am in a flare, I always have the option to move things around. My time with the babies is voluntary so I canceled that, and took the time on Monday to be kind to my body.

     My fibro diagnosis is about five years old now, although my symptoms have been present for much longer. That may not seem a lot to many, but I’ve learned more about what my body can and cannot handle in these five years than all of the rest of the years put together. I’m not perfect, as sometimes I forget and push myself to that flare point (worthy or not). But, with my training as a coach, coaching others, and just learning about myself, I think I have become pretty good at keeping many of the more common fibro symptoms at bay.

     Is this something you are struggling with? Would you like some guidance in how to plan for busy days, how to use your spoons effectively, and how to treat your fibro body kindly? Drop me a line and let’s set up a time to chat. You can do that here. I’m looking forward to hearing from you! =) 

​     Gabapentin is one of the two most common medicines prescribed to help with the symptoms of fibromyalgia. Gabapentin was initially developed to treat seizures and then was found to successfully treat the symptoms of nerve pain. Before my fibromyalgia diagnosis, I was prescribed a low dose of Gabapentin for my Restless Leg Syndrome (RLS). Immediately after my fibromyalgia diagnosis, I was prescribed a much higher dose of Gabapentin to help manage my fibromyalgia symptoms.

     As stated above, Gabapentin was developed to control seizures. It’s highly successful in this treatment as it works by controlling brain impulses as well as slowing down the electrical activity in the neural network. By slowing down the electrical impulses, it slows down the impulses that work hard with fibromyalgia to transmit overactive pain messages. One of the main components of fibromyalgia is a hyperactive sympathetic nervous system.

     Every medication has drawbacks, including Gabapentin. Everyone tolerates these side-effects differently. One of the major complaints about the drug is that it induces “morning fog,” meaning that when you wake up, for a couple of hours each morning, you experience difficulty focusing and possibly some confusion. With “fibro fog” being one of the concerns with the fibro diagnosis, patients are often hesitant to take the drug. However, most doctors will still recommend Gabapentin because it’s benefits outweigh the potentially bothersome side-effects. My own experience is that dosage is the key thing to focus on. Initially, for me, the dosage was too low so it wasn’t addressing the fibromyalgia symptoms. Then, the dosage was too high and I could barely focus, much less stay awake. The doctor and I finally found a dosage that balanced the benefits and side-effects that worked for me.

     I chose to write about Gabapentin because of my personal experience; but, also due to its success for many in treating fibromyalgia patients. Other common drugs that treat fibromyalgia are Lyrica (which is in a similar drug class as Gabapentin) and Cymbalta. It’s important to have an open dialogue with your prescribing doctor in order to find the right medication that works for you. Make sure to note side-effects as it could just be a matter of what time of day that you take the medicine to experience the least amount of side effects.
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     I am by no means a doctor; however, I am happy to discuss my experiences with Gabapentin and other fibromyalgia related medications I have used. I can share the positives and negatives of all of them. If you are interested in a medication to help with the symptoms of the fibromyalgia, talking to your doctor OR a fibromyalgia advisor/coach can be beneficial. I’m available to help you talk about these issues. Feel free to set up an appointment for a free consultation today. I’m usually able to book you in less than a week from the time you contact me. Looking forward to hearing from you soon!