It’s been a long time since I’ve written a true health update here. However, while a great deal has happened, there are still no answers or conclusions to share with everyone. Maybe that’s why I’ve been avoiding writing about this–I still have so many unanswered questions. But for my own benefit of recording my health status accurately, and to catch us all up to at least where we stand today, it’s important that I share what I know thus far.
As I shared in a few previous blog posts, I visited UofM Hospital in March for a second opinion in Rheumatology. Long story short on that visit: I was, and still am, very impressed by the team of physicians and my new physician specifically. Not once has anyone been that thorough and inquisitive towards my healthcare, besides myself of course! After a plethora of x-rays and vials of blood, I waited to hear back and went back to some of my local physicians to transfer some scans that were still missing at UofM. My x-rays looked healthy (good, but curious, news), but my blood tests results were a hot mess.
The first step was to try a medication that is typically used to treat Gout, but was offered because of my high uric acid levels. The first thing my new physician said was, “This is not a treatment.” The first of many to come I’m sure–but I was to think of this medication as a diagnostic tool. After two weeks on the medication, I reported back that I felt nothing positively or negatively as a result. Okay, cross that off the list. Next steps: I more than likely was testing positive for Lupus; however, the anti-inflammatory medications I’ve been on for years (Enbrel, Humira, and now Remicade) are known to cause Lupus and/or cause a positive test of Lupus. So that’s not concrete enough yet. And UofM was STILL waiting for one more scan from my local doctors.
Moving on, the next thing we tried brings us to present day. I was taken off of all anti-inflammatory medications. So that means no infusions, no shots, no NSAIDs, no pain killers. No Remicade, no Methotrexate (Chemo), no pain relievers. I knew that this option was more than likely coming at some point, and I was terrified. Let me explain: I think this was a very smart move, a move that could truly give my body the chance to show us what was going on and let us find the answers. My body has been chock full of those medications for almost 5 years now. On the flip side, I was scared of the symptoms and scared of the amount of pain that might come. The goal of doing this is to see how my body responds: if I felt the same, then we know these medications aren’t working for me; if I felt worse, then we know my body needs anti-inflammatories but that it’s a question of what kind and what for; and if I felt better, then that’s a whole other ball game.
That brings us to today. I have been off of the Methotrexate for 1 month now. And I have been off of the Remicade for 2.5 months now. And how am I feeling? In all honesty: complete shit. But let me explain that. The only memory I have of how I felt on no treatment and medications is from before I was first diagnosed, at my very worst. So you can understand why I was expecting tremendous pain and was terrified that I would not be able to get out of bed. That’s how it was before I started treatments almost 5 years ago. Now, don’t get me wrong, I feel terrible, but here’s the surprising part. I feel terrible and have symptoms that I did not even know existed. The type of pain and the amount of symptoms I have now are so much different than how I felt when I was fighting for a diagnosis.
I still have immense lower back and spine pain, and my hip pains are back; I’m not surprised that that came back. I also have severe Fibromyalgia symptoms, which I am also not surprised about. But here’s what I didn’t expect. The thoracic spine pain: which is basically the middle of your back where your ribs meet your spine, is horrible. It’s a heaviness in my chest that I have never felt before. It’s a belt around my chest that is such an indescribable feeling. And the cracking of the joints and knife-like pains are new. What else is new? Digestive issues. Stomach pains and cramps after eating. Not being hungry. Other digestion issues that come along with that…. And the last symptom is really tough–it’s almost related to my fatigue but it’s a bit different than that. It’s more debilitating. What it feels like is that my entire body, my joints, my limbs, everything is just so heavy and painful. It hurts to move much. It’s hard to walk longer than a block or really just stand on my feet more than 5-10 minutes. And I know that I’m out of shape, I’m certainly making no excuses for that. However, this is just so different from that type of feeling.
So I’ve been chugging along, remaining as strong as I possibly can through these symptoms, just keeping my eye on the prize. A few of the last weeks off of medications here have been some of the hardest weeks of my life. I’m almost grateful for the stress and busy manner of other parts of my life because it’s been a welcomed distraction. I don’t know what all of this means, and I am starting to believe that we have not even come close to my true diagnoses over the past 5 years. We might have been masking a lot with strong medications, and that’s not to say that those types of medications aren’t needed. I might have to go back on them, or a different variation of them. But I think I forgot what was a side effect and what was a true symptom.
The next step is that the doctors at UofM have finally finished re-reading all of my scans from the past 5 years. And just a couple days ago I sent my rheumatologist there an update of how I’ve been feeling off of meds. We’ll see what the next steps are, but my gut (my suddenly messed up gut) is telling me I may have been misdiagnosed.
Unfortunately, that’s about all I can tell you for now, because it’s all I know myself. I look forward to what happens now that we have tried life with no medications. Once I have more information, some diagnoses, maybe even some new treatments, I’ll post another update. Until then, fingers crossed for at least some answers in the near future.
Welcome to another week of the #SelfCareMvmt! This series on self-care is such an important one for chronic illness patients. It sounds counterproductive, but chronic illness patients tend to let self-care fall by the wayside, when we’re the ones who need it more than normal! I’m definitely guilty of this, so this week we’re talking about psychological and emotional self-care. If you’ve missed any of the previous posts, read week one, read week two, and read week three to get yourself caught up! Remember to follow the movement from Self Care Catalysts on social media with #SelfCareMvmt.
I’ve never shied away from that fact that I struggle with significant depression and anxiety. Both lifelong issues, they never became truly intrusive to my day-to-day life until I was diagnosed with chronic diseases. Though separate diseases, depression and anxiety go hand-in-hand for me. I never understood the impact of mental health on quality of life and on physical health until both really started to rule over my life. That’s not to say they still do, or that they don’t; it’s a work in progress really.
As anyone that struggles with clinical depression and/or anxiety will know, it can be a monthly, weekly, or even daily battle. For me, the depression ebbs and flows, but it’s always there, like a creepy lurker. On the other hand, my anxiety is more present and glaring, at least currently. I’ve always been an anxious person, but I’ve noticed more in the past year how it actually impacts my physical health. I’m not going to sit here and give you some sort of miraculous and enlightening advice on conquering mental health and depression and anxiety. Honestly, because it isn’t always something you can conquer. I’m getting real on you here: something it’s just something to live with in the best and healthiest way possible. And for me, that’s how it works. I have surrendered to the concept that I am someone that battles depression and anxiety. Sometimes it’s debilitating, but most times it’s just like a tiny itch that won’t really go away.
In saying all of that, there are really beneficial ways to improve your quality of life when dealing with depression and anxiety, or other mental health conditions (but I can honestly only speak about depression and anxiety in my experience). I am a firm believer in anti-depressants and therapy. The combination of those two treatments have had the biggest impact on the management of my psychological and emotional self-care. I have been on anti-depressants on and off for about 4-5 years now, and I can speak from experience that I am hands down better when I’m on them. They aren’t perfect, and they aren’t a miracle drug. But I have gone off of them and NO THANK YOU! Anti-depressants are truly a personal journey and also filled with trial and error. I’m not sure that mine work the best for me, but at this point, they work well enough to avoid the process of weaning off and trying a new type. At least for right now!
Adding therapy to the treatment is also extremely important for me. It’s not about talking about some huge damaging life event (although some depression and mental health is more about that); for me it’s almost like maintenance. Some weeks it’s just a vent session, and it’s nothing significant. But other weeks it’s truly trying to get out of the dark places, or trying to handle situations that arise in life in a healthy manner, rather than either shutting down and/or letting anxiety take over. I strongly believe in the power of therapy. In fact, I really think everyone should see someone on a regular basis; there are far too many people out there who feel embarrassed or too proud to see a therapist. And honestly, get over it. Mental health is just as important, if not more, to your physical health check-ups.
Aside from medication and therapy, there are also a few things I introduced into my life to help with the day-to-day management of depression and anxiety. I’ve talked about the Health Storylines app before, but one of the biggest benefits of the app is allowing it to become a sort of daily mental journal and check-in. Reminding yourself to record your daily moods, or just to check in every so often on how you’re feeling emotionally can have such a positive impact on chronic illness. As cliche as it sounds, chronic life is a marathon, not a sprint. Taking one day at a time can make a world of a difference. The app’s Daily Moods allows me to really take a look back and see how my depression and anxiety are being managed. Sometimes I think everything is okay and perfectly managed, but then I look back at the history in the app and realize, oh, maybe I had more bad days than I acknowledged. It’s a true benefit to holding myself accountable for my mental health status as well.
Managing your mental health is a truly personal journey. Nevertheless, I really do believe in the power of the simple things. Here’s what I mean: spend time with your friends, laugh, laugh even more, cry if you need to, sleep, find ways to reduce your stress and relax, watch trashy television shows, sleep some more, etc. All of those things not only help manage and treat depression and anxiety, but sometimes it’s just as simple as taking your mind off of things! My theme for this #selfcaremvmt series has really been about being kind to yourself, and I wholeheartedly believe that’s what managing chronic diseases is all about. Give yourself a break and cut yourself some slack!
What are some of your tried and true methods for practicing psychological and emotional self-care? Leave your experiences in the comments below!
Hello everyone! I have a special guest blog post this week from Dr. Elizabeth Kelly, and her blog: Having Community-based Conversations around Human Services through Listening, Engaging and Connecting (HCCHSLEC). I’m excited to share her point of view with you as she comes from a place of understanding chronic illness through being a mother and a community-based nurse. Be sure to follow her blog and follow more community-based conversations through her Twitter account.
Chronic illness is a significant, yet quiet health issue currently occurring within the current United States healthcare system. It is defined as an illness lasting longer than three months and is not self-limiting; it affects almost half of the United States population and accounts for three-fourths of health care costs in this country. (Von Korff, M, et al. (1997)
I came to understand this definition and its application when our six-week-old son received his first asthma diagnosis. I dutifully followed every medical treatment including washing the walls and floors of the baby’s room daily, using special room filters, and limiting visitors because “he would out-grow it.” Many other medical treatment suggestions followed, all with the same health outcomes. He wheezed, coughed, and cried for years. As he grew and started attending school he often asked “why can’t I keep up with the rest of the kids?”
The most reliable source I found to understand our son’s disease over time was the wisdom and experiences of other mothers with children who also struggled with the disease. We put our heads together, shared information, followed and documented medical treatments, and compared notes on our several children. What we discovered is that we lacked advocacy skills that better prepared us for the long-term implications of the disease, how it cycles through each child’s life and development, and the long term effects of the variety of treatments received.
While trying to understand asthma as a disease, I also found I was missing my role as a support and advocate for my child. Other mothers asked similar questions, “What am I not understanding about the doctor’s treatments,” “how do I ask the physical education teacher to consider exercise and endurance levels?” Sharing these experiences with other mothers helped me to begin a learning process by discovering the definition of words I was using.
Advocacy involves the “efforts of an individual or group to effectively communicate, convey, negotiate, or assert the interests, desires, needs, and rights of the individual or group of individuals speaking on behalf of or in support of themselves or another person.” (www.schooladvocacy.ca)
One who participates in the activities of advocacy is identified as an “advocate,” a “person who speaks up for, and defends the rights of him or herself, or of another person. (www.schooladvocacy.ca)
Discovering the meaning of each term sets into motion improved advocacy activities and skills.
The activities involve a variety of skills necessary for the advocate(s) to understand, apply, evaluate, and assess for next steps. The overarching framework for these activities is collaboration, which involves knowledge of 1) the patient, both short and long-term, and 2) the disease of the patient. Also included in collaboration efforts are the patient’s family, healthcare services, and supportive services. Because of the current changing nature of patient care, it is important to understand and plan advocacy strategies that relate to the patient’s goals, who will be involved in achieving the goals, levels of expectation, and methods by which to monitor both the standards of care as well as that of the patient’s care status.
This framework for advocates is also “keen to communicate with health policy members at the local, state and national level, and follow legislation that has both direct and indirect influence for the patient.” (www.medscape.com) Evidence for this level of collaboration recently appeared while discharging a patient from the hospital. Although the hospital was aware that a state healthcare policy, related to the patient’s ongoing care had lost its funding, the patient left the hospital without information about the policy change. After several days of waiting for service delivery, a family member learned about the policy change. Several days later and numerous phone calls by the family to both the hospital and legislative representatives, advocacy activities shifted to agencies that could provide the equipment. As the family reflected on the circumstances to a newspaper, they said: “never again will there be trust between us and those who provide health care.”
Practicing collaboration includes ongoing knowledge-based communication skills at all levels of activities and with all participants. With the patient as the center of focus when planning care, listening to the patient’s experiences sharpens the care plan. Drawing on a variety of voices that contribute to the care plan reveals innovative opportunities for care. From the discovery and inclusion of innovations comes new data that enables decisions to shift patient needs and help avoid medical errors.
At the same time that patient care is being monitored, evaluated, and reported, information from the activities and strategies is gathered. Sharing the information is an important advocacy strategy because knowledge is power and when individuals receive knowledge, communication improves, new questions develop, and meeting daily challenges with the new knowledge allows for an expanded discussion with others, their experiences, and their strategies. Sharing knowledge strengthens and gives voice to the community that currently remains in the background while costs rise.
Advocacy is a vehicle to raise the volume of quiet voices for those living with chronic illness and who find themselves overlooked, misjudged, and misguided. Collaborative activities and strategies provide guidance toward increasing knowledge of the patient, keeping the patient at the center of the care process, and care providers aware of how the patient progresses. Communication between the patient, family, and various support systems leads to discovering innovative best practices for a patient over time. Now is the time to enhance everyone’s voices that find themselves caring for those with this type of illness.
It’s so important for us to understand different perspectives as patients, providers, loved ones, friends, and caregivers of chronic illness. Thank you so much to Dr. Kelly for sharing her perspective! If you’re interested in guest blogging on Chronically Kristin, please send me an email: email@example.com.
Welcome to another week of the #SelfCareMvmt series! If you’ve missed the first 2 weeks, you can learn about my ‘Daily Little Accomplishments,’ and ‘Physical Self-Care’ in my last two blog posts. This week we’re going to be talking about Spiritual Self-Care. This is always a loaded topic for me, but I think there is still benefit in my life for this type of practice.
First things first, I’m an Atheist. So when I talk about Spiritual Self-Care, it’s from a 100% non-religious standpoint. (Disclaimer: I wholeheartedly respect all beliefs, and I expect that same respect towards me). Moving on! Being spiritual can mean a number of different things: religion, meditation, praying, mental wellness, mindfulness, yoga, and so much more.
I’ve been practicing yoga on and off since I was in high school. So maybe 15 years or so? Yoga has always been a calming force in my life. It’s one of the best go-to centering practices. I admit that I am completely out of my yoga routine and haven’t practiced in almost 6 months. Yikes! I am really pushing myself to get in the right mental place to start yoga back up again.
I think that’s a big part of this concept of spiritual self-care. To me, it’s about being in the right place mentally. Mindfulness is one of the most challenging and beneficial practices I have ever tried. Various therapists have taught me how to practice mindfulness in some shape or form. It’s such an important tactic for someone like me. I am such a high anxiety person that a normal day is like there is a vice around my chest. It’s pretty bad. And I know I need to get better at managing that. I have no shame in taking anti-anxiety medications when needed. I don’t think there’s anything wrong with that. But I will say that it takes more than just medications. I think mindfulness plays a large role in calming a person down, as well as just taking a step back and realigning your priorities.
It’s hard, I won’t lie. Mindfulness is a constant practice and work of art. But I think when you do take the time for it, it really works. Spiritual self-care is just as important as physical self-care. You can take care of your body and chronic diseases all you want, but if you’re not taking care of spiritual health and/or mental health I think it’s all for nothing. Even just waking up and taking 5 minutes to just breathe and go over your day before you get going is a game changer.
What are some of your favorite ways to practice spiritual self-care?
Are you interested in learning more about the #SELFCAREMVMT? Join through the website or follow the hashtag on social media.
Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
If you’re like me, you know that medications are sometimes necessary but holistic methods are embraced when possible. Having multiple chronic diseases and suffering from severe chronic pain forces you to make medication decisions on a daily basis. As much as I’m not afraid to admit if I need to take pain medication, I stay away from it the vast majority of the time. Simply stated, this is because I don’t want to destroy my liver and kidneys by the time I’m 50 or younger. Most days I just grin and bear it. But what if there are options that are medication free for reducing my level of pain every day? Sign me up, I say!
Well, then let me tell you about Quell. Side note: I have rhymed my last two sentences–I promise to not go all Dr. Seuss on you guys! Anyway, what is Quell? Quell is a 100% drug-free, wearable pain relief device. The Quell device fits into a little pocket on a band that wraps around your upper calf. on the inside of the band, you connect the Quell device to a strip of electrodes that sticks to your skin. This is how Quell delivers the pain relief.
When I first opened the Quell box and put the device on my calf, I thought there was no way that this device was going to help my spine pain, hip pain, and widespread Fibromyalgia pain if it was sitting on a part of my body NOT in pain. However, the therapy that Quell uses, called OptiTherapy®, stimulated the sensory nerves in your leg which then travels up to the brain. The signal in the brain then triggers endogenous opioids into the spine. This provides widespread relief from chronic pain. Cool, right? And you don’t need to wear a Quell device on each leg, just one will work fine.
I wore the Quell device for about 3 weeks before writing this review and I was definitely pleased with the results. I don’t know that I would completely replace my pain management regime with the Quell device, but it is absolutely a beneficial addition. I can’t claim to know enough about nerves and the signals in the brain; however, I did find that the Quell device almost “distracted” me enough from some of my pain that it wasn’t in the forefront of my brain. Now, I don’t know if distraction is really the same as relief in this case, but that’s the best way to explain my experience with Quell.
Another great benefit of Quell is their in depth customer service. Quell Customer Care did a great job of explaining how Quell works to relieve pain when I had doubts that it would work on the type and locations of my pain. I felt much more informed after speaking with them. If you feel like you need more information than the manual provides, have issues with the device, or simply want to learn more, I urge you to contact them at firstname.lastname@example.org or by phone at 800-204-6577.
I’ve mentioned this in so many previous blog posts, but sleep is a real issue for me. Between being exhausted 24/7, needing sleep medication to stay asleep, and working too much, sleep is constantly on my mind. I always want to nap, and I count down until I can sleep each day (pathetic, I know). So when I heard Quell also tracks sleep quality, my ears definitely perked up. In fact, I think the Quell device might be more accurate in tracking my sleep than my FitBit. I need to use it a bit longer to know for sure, but it looks promising. As you’ll see in my screenshots, Quell measures the time in bed, time asleep, sleep quality, sleep on back, sleep on L & R, position changes, leg movements, and time out of bed. Super comprehensive!
As you can see, I’d highly recommend giving the Quell device a try if you suffer from chronic pain. If anything, it’s much safer than significant use of pain medications or opioids. To learn more about Quell and purchase a device for yourself, visit their website.
All of the mentioned tracking and dashboards are easily managed through an app available by download on both iPhone and Android. The app allows you to start and stop therapy sessions, increase or decrease intensity, check battery and electrode life, and much more. Each therapy session is 60 minutes every other hour.
If you’re still looking for more information and educational resources about the Quell device, check out the User Manual, Instructional Videos, and Troubleshooting Tips within the Quell User section of their website. All you have to do is register your device and you’ll receive product updates and news. You can also follow Quell on Facebook and Twitter.
Already tried the Quell device? Id love to hear about your experiences in the comments section below!
Happy Wednesday, friends! It’s time for another guest blog! As I stated in the first guest blog, if you are interested in guest blogging on Chronically Kristin, please email me here: email@example.com.
For our next guest post, I’m excited to introduce to you Amy Saunders from Living with ME. Thanks so much for participating, Amy!:)
What is your favorite part of being a chronic illness blogger?
I love that I can share my experiences with my illness as well as other lifestyle things such as fitness and healthy eating! Just knowing that I might help a couple of people with their illness makes me really happy. Also it gives me something else to focus on, something positive if you like, that relates to the illness!
Tell us about your health journey: diagnosis, symptoms, how you take care of yourself, etc.
I got Glandular Fever in March/April 2012 (wow was it that long ago?!) and was ill for a good few months following that. It wasn’t until the August/September 2013 that I started feeling back to myself again. Unfortunately, after a difficult Christmas that year concerning family I slowly started deteriorating back to being ill 3 or 4 times a week. I went to the Doctors who at first told me there was nothing wrong with me, but after a panic attack in an important A Level exam, another GP decided to refer me to a specialist, who then diagnosed me with Post Glandular Fever Chronic Fatigue Syndrome (ME/CFS) in July 2014.
If you could give one piece of advice to those newly diagnosed, what would it be?
Believe in yourself. It’s horrible when others doubt you, especially close family and friends and the doctors but as soon as you start to second guess yourself and start asking questions like ‘Am I just being lazy?’ or ‘Is it just in my head?’ it gets 10 times worse. Believe your body when you wake up being ill and just rest.
What are some of your favorite ways to relax and take care of yourself?
I love practicing Mindfulness – I find it really helps me to take my mind off everything else and really concentrate on that moment. I also love to do exercise. Strangely enough, my love for fitness started nearly a year after my diagnosis and so long as I take things easy and know my limits, I can manage exercising and I find it really helps with the fatigue – although that isn’t always the case!
Tell us something interesting about yourself that has nothing to do with chronic illnesses.
I am a massive Taylor Swift fan and I LOVE Friends (the TV show)! I can’t get enough of it!
As a patient advocate, what do you think our healthcare system could do to become more inclusive of patients?
What I think would be great is if they did more research as individual GP practices into different chronic illnesses because so many GPs don’t even think about illnesses such as ME/CFS etc and if blood tests come back normal, well “you’re just a normal teenager who gets tired and stressed” – yes, a Doctor actually said that to me.
Be sure to follow Amy’s blog or any of her social media channels above!
If you haven’t checked out the #SELFCAREMVMT yet from Self Care Catalysts, I urge you to visit their website and read my first blog in the series from last week. Self-care is an integral part of the quality of life of a chronic illness patient. Patients are advocating for this movement, and now companies are too!
Last week, we talked about daily little accomplishments and being kind to yourself when living with multiple chronic illnesses. This week I want to get more specific on that and talk about what I do to give myself some physical self-care. Sometimes the idea of physical self-care is tough for patients because that can illicit thoughts of heavy exercise and activity. Yes, it includes activity, but physical self-care is more than that in my eyes. And it also doesn’t have to be an intense workout, which is something so many of us have difficulty doing.
Physical self-care in my life is still about being kind to my body. But it’s also about doing things I might not feel like doing, just because I know they are good for me. Full disclosure people: I hate exercising. I’m a tad lazy, I’ll admit it. But I still know how important activity is. In fact, when it comes to some of my diseases (like spinal arthritis and fibromyalgia), activity is a double-edged sword. I’m in pain so it’s the last thing I feel like doing, however, regular light exercise eases the pain and symptoms of both mentioned conditions. Go figure, right!
For me, there are a couple go-to exercise options that feel like a good workout, yet don’t aggravate my symptoms or pain. Yoga is one of my favorite forms of exercise, but I admit I have gotten out of the routine of going. Another exercise form I like is biking. I’m excited because I just recently got a stationary/recumbent bike for my birthday, so I’ll be pedaling into a routine with that soon. I even placed it in front of my TV so I have no excuse! Whatever works, right?
Exercise is a pretty obvious part of physical self-care, but there are other opportunities as a multiple chronic illnesses patient that really make a difference in my day to day quality of life. Health Storylines is an app from Self Care Catalysts (yes, the same company heading up this #SELFCAREMVMT series) that incorporates a vast number of self-care components. You can track your symptoms, medications, mood, daily notes, gain peer support, add family members and friends, and even send reports to your physician or care team. Health Storylines also has disease-specific apps for a more personalized approach. I’ve used the Ankylosing Spondylitis specific app before, but I’ve switched to using the Health Storylines main app. This is due to some findings on whether or not I actually have Ankylosing Spondylitis, but that’s a topic for a different blog post (coming soon).
Health Storylines is different than many other health tracking apps because it offers so much more in terms of historical data. I love that I can see how my symptoms have changed day to day. And you can even edit the visibility of those symptoms: family, doctor, private, support group. It’s very intuitive and arguably the first of its kind in terms of well-rounded self-care disease management. Download the app for yourself for iPhone here, and Android here.
Other facets of my physical self-care include sleep, drinking enough water, taking medications on time, seeing my doctors, or at least messaging them, regularly, and more. Medication compliance is huge: there is a large debate over the word compliance in the chronic illness community and I definitely understand the wariness of that word. But for lack of a better term, it works. I have been in a position where I was lazy on when I took my medications or if I took them at all. However, you can’t begin to manage a treatment plan and your symptoms if you don’t at least adhere to medication frequency and time. I definitely learned that the hard way.
Additionally, as I said in my last #SELFCAREMVMT blog post, sleep is critical for me. I will move my schedule around and procrastinate on tasks if it means I will get a proper amount of sleep, i.e, 7-10 hours. I just know that I need it. Drinking enough water helps with my frequent headaches, weight gain, and brain fog. I notice a big difference in my focus and ability to have a short term memory if I’m dehydrated and not really drinking much. I admit I forget at least one day a week, but it’s about baby steps.
The biggest takeaway with all of this is still about being kind to yourself. No one is perfect, and you can’t beat yourself up for that. I’m eating dark chocolate chips as I write this, it is what it is! Push yourself to accomplish what gives you the highest level of physical self-care, but don’t lose it all for one tiny step back. Additionally, self-care is a day by day process for me. I try not to go more than a week in advance in my planning for self-care because I know that life happens, symptoms change, and diseases flare. Que Será Será; whatever will be, will be.
I am so excited to share the beginning of a 6-week series with you all. If you haven’t read my experience with the company, Self Care Catalysts, from when I attended ePharma, go do that here. Self Care Catalysts is one of the first to dedicate energy and time around self-care for patients, outside of patients themselves! In doing so, they are kicking off a movement called: Self Care Mvmt. The Self Care Mvmt will highlight the stories of real patients and shed more light and perspective around what it really means to live with a chronic illness, “to reveal the unseen and invisible aspects of living with a long-term illness, and to celebrate self-care.” If you’re interested in learning more about the Self Care Mvmt, or joining it yourself, head over to their website here. Follow along on social media with the hashtag: #selfcaremvmt.
The first topic in the series is about finding the positive in your day to day life with a chronic illness. The topic, Daily Little Accomplishments, will highlight ordinary, routine activities that can be celebrated as accomplishments because of the challenges that arise when living with chronic conditions. Just as an FYI to any new readers I might have, and for the purposes of this blog series, here are the chronic conditions that I have been dealt with: Ankylosing Spondylitis, Fibromyalgia, Chronic Fatigue Syndrome, Depression, Costochondritis, Anxiety, Rhinitis, and Autoimmune Anemia.
Daily Little Accomplishments: this is a tough topic for me. Not because I don’t see the importance of it, no, in fact I believe it’s of utmost necessity when living with multiple chronic illnesses. Nevertheless, I’m not that great at it. Sometimes I don’t know why I torture myself with the type of lifestyle and schedule that I lead. I think I’m widely successful at being aware of what is the best thing for me, or what is the healthiest (physically, mentally, emotionally) for me. However, I struggle with the follow through. I know exactly what I need to do, but I don’t do it. Or I don’t know how to do it. Needless to say, execution of self-care is not my strong suit.
I’m trying to get better at this and really focus on what my body needs, what it doesn’t need, and when/how to push through if possible. I know that a portion of my symptoms are due to my weight gain and inactivity. I know that if I really focus on getting enough light exercise and losing weight, a small level of the severity of my symptoms would go away/get better. So that’s part of it. The other parts are more due to my perfectionism, stubbornness, and desire to control everything. What’s that saying: the harder you try to hold on to something, the more it slips away? I think that sometimes I want to control everything, not only as a safety net, but also because I feel like I can do it better than anyone else. Well, obviously that isn’t working out well for me considering my stress and anxiety levels.
Okay, enough about how I’m bad at this! There are a few things I’ve gotten much better at in the past year or two. One of these is sleep. Sleep is one of the last things I will compromise. No offense to anyone in my life–but I will cancel just about anything if it’s going to hinder a nap or a good night’s sleep. #SorryNotSorry. I’m someone who does not function well, or at all, without a significant amount of sleep. Most of my conditions cause fatigue, but having Chronic Fatigue Syndrome and Fibromyalgia as two of them really impacts my ability to have any accomplishments throughout the day if I’m running on only a handful of hours of sleep.
If I have my sleep handled for the day/night, then I can more easily bring in other Daily Little Accomplishments. One of the biggest accomplishments to me is being able to hold a (more than) full-time job. I don’t know if I’m grateful that maybe my conditions’ symptoms are less severe than others, or if they are the same and I have built a mental toughness around them, but either way it allows me to still be dedicated to my career. I love my job, and I love my career. It means so much to me to do a good job and make headway with my career development. I’m proud of the experience I have and the depth of skill sets I’ve acquired. That being said, it’s exhausting as well. I know that if I practiced more of the #selfcaremvmt, and less of the control freak/perfectionist persona, I would be even more successful. And healthier too!
Honestly, another Daily Little Accomplishment for me is if I accomplish making a home cooked meal. It’s kind of annoying to cook a full meal for just one person, but I know that when I do that, not only do I save money, but I eat a lot healthier too. Maybe I should say this is more of a Daily Little Goal instead of a Daily Little Accomplishment.
One thing I’ve learned while navigating the journey of chronic illness is that you have to be kinder to yourself. And I do struggle with this, though admittedly I have gotten better in the past year. You have to understand when your body needs a rest and when you might need extra assistance to accomplish something. It’s not about ego or pride, it’s about just being kind to your body. Love yourself a little bit harder by cutting yourself some slack.
I know, I know. Shut up Kristin and take your own advice. 🙂
(Next up in the #SelfCareMvmt Series, we’re chatting about physical self-care)
Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.
I’m treating this review just a tad differently because I have a few pre-review explanations over the product. First of all, I have a number of different chronic diseases, a couple of which directly influence my sleep. I’m on prescription sleep medication because my body only sleeps for about 30-60 minutes a night on its own. I’ve been on Trazodone for a couple years now. I brought the bottle of FibroSleep to my doctor and she was fine with me taking it with other medications (the label does say you should check with your doctor before taking if you are also taking anti-depressants, which I am) but I had to stop taking the sleep meds if I wanted to try the FibroSleep. So her recommendation was to try it but not for more than 3 days or so. In saying that, I tried FibroSleep for about 4 days. For the rest of this review, my opinions and thoughts on FibroSleep reflect my experiences with over the counter/non-prescription sleep aids.
Okay, moving on after my little disclaimers there. When I received FibroSleep, I knew that there was a chance it would not work as well as my prescription sleep medications, and I was right. However, I have tried many over the counter and holistic sleep aids (warm milk, meditation, Melatonin, ZzzQuil, white noise, diffusing essential oils, sleep tea, etc) and was excited to compare those with how FibroSleep works.
FibroSleep is made by the company, ProHealth, and intended for “even the most challenged” sleepers. Often Fibromyalgia causes poor sleep and/or what we like to call, Painsomnia, in the chronic illness community. The formula in FibroSleep is meant to promote sleep and relaxation. Additionally, some of the other ingredients are good for hormone and nerve balance. Catching the theme here? All symptoms of severe Fibromyalgia.
Here is the list of ingredients in case the type is too small in the photo above to read: Magnesium, L-Theanine, GABA (Gamma Aminobutyric Acid), ZMA (Zinc L-Monomethionine Aspartate and Vitamin B6), Lemon Balm, Ginger, 5-HTP, Peppermint, Hops 4:1 Extract, Melatonin, Sedapine, and other ingredients (gelatin, microcrystalline cellulose, magnesium stearate, silicon dioxide, and water). Directions are to take 2 capsules about an hour before going to sleep.
First impression is that the capsules don’t have any significant taste or smell. This is a big plus to me as I often find that natural supplements or vitamins have a strong smell and taste disgusting. I have a hard time taking pills like that, but FibroSleep was relatively neutral.
So how did it work? I found that FibroSleep helped me fall asleep just as well as my sleep medications or as well as Melatonin has in the past. The real test for me personally was going to be if FibroSleep helped me stay asleep all night long. My overactive nerves, my chronic pain, and my fatigue disorders typically wake me up multiple times throughout the night or just keep me awake altogether. I will say that FibroSleep did about as good as it could have done in this area for me.
What I mean by that is that I knew it wouldn’t give me 8-10 hours like my prescribed medication does. However, as I previously mentioned, my review of FibroSleep is in comparison to over the counter options like Melatonin. FibroSleep definitely worked better than Melatonin for me. I would say that I got about 5-6 hours of sleep on FibroSleep. I know at first glance that doesn’t seem like a lot, but for my explained situation, that’s actually really great! I’ve never gotten quite that long of an amount from Melatonin. I did wake up groggy, but I actually always do because of my fatigue disorder. So the positive is that I woke up less groggy than I would from Melatonin, and did not experience that leftover “hangover” type fog that some sleep aids give you.
I would absolutely recommend FibroSleep to those of you that really struggle with getting proper rest. Like I said before, my situation is different and I wouldn’t take it over my prescription sleep medication. However, if I needed to get off of medications at any point (which could become true soon–more on that in another blog post), I would definitely try FibroSleep: 5-6 hours is better than 30-60 minutes!
In fact, the team at ProHealth is having a giveaway this week! Be sure to enter here for your chance to win 1 of 10 bottles of FibroSleep.