Chronic Illness Bloggers is a network for bloggers focused on chronic illness. We seek to provide educational opportunities for bloggers so that they can improve their blogs and reach a wider audience. Work together to raise awareness for chronic conditions and increase traffic to our networked blogs.
‘Life as I knew it drastically changed when I learned that I had a confirmed diagnosis called Crohn’s disease. For months before this day, my health had been slipping into a downward spiral. New symptoms seemed to pop up and to my knowledge they were unrelated. Being only 12 years old at the time, my parents played a critical role in advocating for me.
During the fall that year I was a 7th grade student. Nothing up until this point had been unusual or stood out in my life. I grew up as the middle child in a middle class suburb with two loving parents. There had been no traumas, no life-altering losses, no bone breaks or severe illnesses. I had never even been stung by a bee or had an ear infection (still true to this day!). I enjoyed hanging out with my girl friends, reading teen fiction books, and normal kid stuff. I was your average American pre-teen.
Yet, something had been brewing for a long time inside my body without me knowing. I had always been a normal weight — never over or under. But I had started losing weight and looking too skinny. I experienced a number of other symptoms that built on each other over time including:
Feeling cold and tired all the time. My nails were usually tinted blue.
Having stomachaches after everything I ate.
I had returned to my pediatrician many times with my mom pushing for someone to evaluate me further. Unfortunately, I was told over and over that my symptoms didn’t warrant any concern, and they somehow wrote them off as normal.
The last time we saw a doctor before I was diagnosed I was at my sickest. Thankfully, this doctor sent us to a pediatric gastroenterologist right away. From there, things moved quickly!
I spent about 10 days in the hospital, filled with endless tests and questioning. It was tiring and an entirely new experience for a child who was rarely sick. Although it was scary to have a disease, I remember relief washing over me when I realized that there was a known condition for what was happening to me.
Naturally, my parents asked about how we could live at home to best manage this disease. They wanted me to get better so badly and were willing to do whatever it took, as long as it didn’t make me sicker.
Eleven years ago there were less options for Crohn’s and ulcerative colitis than there are today. Doctors suggested a couple of long-term drug therapies or surgery. My parents could bear the thought of putting their child on a serious drug, especially when the long-term consequences for a growing child were largely unknown.
I went home on the steroid prednisone and a daily maintenance drug. My parents wanted to know what I should eat now. It seemed obvious to them that since I now had a gastrointestinal disease, that the foods I ate could have an impact. However, doctors poo-pooed this idea. They were confident that food had little or nothing to do with IBD and that the diet talk out there was extremely hard to commit to with no evidence that it worked.
My parents, not wanting to make life harder for me, didn’t put me on an extreme diet. I took my medications and I generally avoided lactose and a lot of fried foods. Other than that, life didn’t change too much.
That is until about 14 months after my diagnosis, I found myself once again between a rock and a hard place.
A Vicious Cycle
Just over a year past my diagnosis anniversary I was getting sick again. So sick, that I was hospitalized two more times within a month of each other to keep me hydrated and get tested on. I had to be put back on prednisone.
My parents were at a loss. We followed every bit of advice my doctors informed us of. If we were doing everything right, why was I getting so sick? Why couldn’t I remain stabilized and healthy? They were still not comfortable with the drug options for my age and wanted to avoid surgery if possible.
Then, relatives reached out to my parents with the most important phone call they could ever receive. After a long talk, my mom got off the phone to tell me about it. A relative of mine who also had Crohn’s for many years went to a holistic practitioner. Not a doctor that prescribed drugs or performed tests, but one that utilized food and supplementation to improve health conditions. He had seen astronomical success in his health, and they believed they could help me too. With their referral and my mom’s persistence, I had myself a consultation.
My Journey into Alternative Medicine
We weren’t a family who dabbled into anything considered “alternative.” We ate a pretty standard American diet, saw regular physicians, and didn’t buy organic food or green home products. My dad saw a chiropractor for his back once in a while; that’s about as alternative as we got.
And so, this consultation changed my life. He worked with me, testing me for food sensitivities, evaluating my nutritional needs and explaining things along the way. It was fascinating but frightening. For a now 13-year-old, being told I could have gluten, dairy and many more things was devastating. But I would have been crazy not to try it. So I did!
Fast forward 11 years later, and this is still a main part of my healing protocol. I have seen the test results showing my inflammation has decreased over time and fully believe in the power of food for restoring the body back to health.
I never did need surgery, and occasionally needed mainstream medications. My approach has evolved over time to include self-care strategies, acupuncture and massage, prioritizing sleep, and positive thinking and mantras.
With such a beast of a disease that IBD is, my philosophy is to be aware of all the tools I have to stay well, whether they are traditional or alternative.
The Silver Lining
Even though Crohn’s comes with some hard days and unpleasant symptoms, it has brought a lot of good into my life. I see it as a blessing that this disease caused me to become so invested in nutrition because not only do I eat better, but so does my family! I also provide a voice to those struggling by sharing my story and experiences to let others know that they are not alone. And then, I completely changed careers right after graduating college! (Ouch, I know). I switched from elementary education to becoming a certified Nutritional Therapy Practitioner, so I could help people in the situation I was in 11 years ago.
Now, I feel empowered about my disease. I know about the latest treatments and research and I can discuss these with my doctors. I know my body so well; a connection that is lost among a lot of people today.
Whether you have just been diagnosed with a chronic illness or are struggling, don’t give up! If what you’re doing isn’t working, do a little research and see if there is something else you can try. It might just change your life.
Hello everybody, and happy April! This month I wanted to kick off a new feature idea I had for Chronic Illness Bloggers: a monthly edit.
I know how hard all our bloggers work-both in terms of content for the network and the brands we work with, and on providing an invaluable resource to their readers. So each month, we’ll present a ‘monthly edit’: ten posts handpicked by me (although, you’re welcome to send in your suggestions) that are a must-read for the month ahead. Without further to do, here are April’s ten posts…
1.Today I Ran My First Half Marathon by I Am Type Cast
I’d seen Nickie tweet in the run-up to the marathon; so I was even more pleased to read she’d done it! I love how honest and open she was about taking it on; her last minute ‘I’m not doing it texts’ to friends and of course being triumphant and crossing the finish line! Well done Nickie. Read her post here.
2.I’ve Spent my life in hospitals: living a limited life and challenging yourself for more by Chronically Strong
An inspirational read from Shawntel who states; “spending my life in hospitals has given me a greater appreciation for life outside of those walls. I don’t want to spend my life anticipating my next surgery.” A perfect reminder to seize the day. Read her post here.
3.5 Random Things that Worry me With Chronic Illness by Achy Smile.
I’ve only just discovered Erica’s blog; but doesn’t the name just sum up our lives? I loved this relatable post about nagging worries that we all have. Read her post here.
4. Custom Domain: Why Your Blog Needs One by From Fiona
I’ve been wanting a post that really emphasises the value of having our own domain-and Fiona articulates this perfectly. If you’re wanting to take your blog to the next level, give this a read and make notes here.
5.Self-Care: Not What You Think by Navigating the Storms
Self-care is so important- but it doesn’t have to be expensive bath salts or spa days.This post by blogger Carole talks about what self’-care can actually mean to us all. Read here.
6. No More Grapes Review by the Spoonie Mummy
This month, five of our bloggers teamed up with one of our brand partners ‘No More Grapes’; to raise awareness of their fantastic platform-which helps patients manage hospital visits, share health updates with friends and family and help answer the question: what can I do to help? Natalie’s review is fantastic and she outlines the real benefits it can have to the lives of chronically ill patients. Read here.
7.The Important of Recognising and Treating Sleep Apnea by My Meena Life
We also teamed up with Aeroflow this month; and Ava from My Meena Life wrote a fantastic, length post about her husband’s battle with being diagnosed with sleep apnea. If you suspect you suffer with it, give this post a read.
8.Supporting Children When a Parent is Chronically Ill by Tripping through Trickle
Jen blogs about her life with MS; and this post about her experiences as a parent is a fantastic read.She shares some amazing tips and advice for chronically ill parents. Read her advice here.
9. One Month with My Feeding Tube by This Spoonie Speaks
So much admiration for Kali as she shares her month with a feeding tube- such determination in facing her struggles.Read her account here
10. Is Having A Disabled Partner A Burden? by Top Lady Talks
A contentious topic carefully discussed and evaluated- where do you stand on this topic and how we perceive disability? Read and join in with the debate here.
I hope you enjoyed this post- please take a second to share it and help support your fellow CIB bloggers! Look out for May’s edit soon!
There seems to be a lot of information on the internet about all the different types of catheters and products that are available. However, there seems to be very little about what it is actually like to live with a long-term catheter or suggestions on how to improve your quality of life with one.
As you may be aware already the world of catheters can be quite confusing and mindboggling. Aeroflow is always keen to get real patients experiences when using their catheters-and stress that actually life still goes on with one! Firstly, I wanted to briefly describe the different types of catheters that are available and talk all about my real experiences of living one.
The 3 main types of catheter are:
• Intermittent catheters – this is a way to empty the bladder if urinating is difficult. It involves passing a catheter, through the urethra and into the bladder at different intervals during the day. You or your caregivers are usually taught by a specialist urology nurse how to do this.
• Indwelling catheters – This is a catheter that stays in the bladder and can either go through your urethra called a urethral catheter or through the gap between your supra-pubic bone called a suprapubic catheter. These types of catheters are also called long-term catheters.
• External catheters – This is mainly a condom catheter and is placed outside the body only used for men and the device looks like a condom. This device is not used as much as the other types.
For the purpose of this article, I am focusing on long-term catheter use either with a urethral or suprapubic catheter in place.
Life with a long-term catheter can be a challenge at first. It takes some time to adjust to this new way of urinating and all the products that go with it!
At 21, I had my first suprapubic catheter and I ended up having this for 7 years. The first few years I struggled with acceptance and I seemed to be very resistant. Last few years I realised that in order to still try and live life to the best of my ability with a catheter that I needed to find a way to improve my life with one.The following suggestions have all been tried by myself, throughout the years. A catheter can affect you physically and mentally but there are some small things you can do to reduce possible complications and to still partake in life.
1. Change the urinary collection bags or valves every 5-7 days
With a long-term catheter, there are different options to collect the urine. It is important to try and change the drainage bags every 5 to 7 days if you are able to because this will help reduce the risk of infections.
One of the biggest problems with having a long-term catheter is catheter Associated Urinary Tract Infections (CAUTI). Having a catheter can introduce bacteria into the bladder and cause a urinary infection. The longer the catheter stays in the bladder the greater the risk of infection. Depending on your care plan and team it is best to try and have the catheter changed every 4-6 weeks.
One of the best things about Aeroflow is that they offer monthly reminders and deliver everything to your door-which to me is incredibly important on keeping on top of changing things to avoid these types of infections! After all, life goes on and we can all be forgetful at times!
2. Keep Hydrated
When you have a long-term catheter it is important to drink plenty of fluids to keep the urine flowing. The recommendation is 2-3 litres per day which can help prevent infections, blockages and sediment forming in the tube. If the urine is clear and looks like water with a hint of yellow then this is a sign that you are drinking enough. If this is darker and more concentrated then you will need to drink more.
Cranberry juice or cranberry tablets can be used to help prevent infection and reduce the calcium in the urine that can cause blockages. However, there seems to be some contradictory information and not everybody with a catheter may agree. There seems to be a split decision on this. I used to drink cranberry to help prevent urinary infections even if it didn’t help prevent the urinary infections I felt like I was doing something to help prevent them!
3. Gentle exercising with a catheter
Sometimes when you have a catheter it can be hard to exercise especially if you have painful bladder spasms. However, for me it is important to try and partake in gentle exercising whether this is a walk around the block, swimming or a gentle aqua aerobics class. Exercising will help keep things moving but it can also help mentally. Try and find something that works well for you but start off gently.
I used to find swimming helped with the spasms and made me feel better all-round. I find being in the water is the only time where I do not feel ill. Sometimes I used to go swimming with a flip flow attached but towards the end, I just went in the water with my leg bag (I asked permission beforehand). This allowed me to be in the water longer.
4. Find a catheter that works best for you
There are lots of different types of indwelling catheters out there that are made slightly different. It is important to know that there are other options if you do not get on with the one that has been inserted.
For years I was unaware that there were different types of catheters available and I finally asked my physician and nurse if we could try a different type. I was struggling with lots of infections and eventually, I was given a silver-coated catheter that I found did help reduce the infections.
An example of this is the Bardex infection control 2-way foley catheter from Aeroflow that reduces bacterial adherence and minimizes biofilm formation. These are clinically proven to reduce the catheter-associated urinary infections by having a silver Hydrogel coating! However sites like Aeroflow have a huge range (which if you’re in the US, can be claimed through your insurance) so don’t feel as if you just need to settle on the first one you try!
5. Use a lubricating gel or local anaesthetic to help with the bladder spasms
One side effect of having a catheter can be painful bladder spasms. Some people may have this daily but others may only have these spasms when they have a urinary infection.
When these spasms hit I found a lubricating gel or local anaesthetic was extremely helpful. I would either put it on the supra-pubic opening or around my urethra to help numb that area. I found this helpful as well as heat pads, regular baths and pain relief.
6. Still, travel with a catheter
I still enjoy travel-even with my catheter!
Travelling with a long-term catheter can be a bit intimidating. Having a catheter shouldn’t stop you from travelling unless you have other medical conditions and have been told not to fly.
Having holidays can help you feel that you are still living your life and that’s the most important message I wanted to mention in this article.
The key is preparation. Some suggestions to help make this easier are:
• Contact the airline beforehand
• Make sure you have doctor documentation that you will be carrying catheters and drainage bags with you.
• Certificate from your supply company that says you have a catheter, will carry supplies and can be stamped by your GP. Aeroflow have dedicated reps you can contact for this.
• Pack half of the supplies in your suitcase and the other half in your hand luggage. This is in case the suitcase goes missing.
• Medications are in your hand luggage
• Bring more supplies than you need.
7. Avoid constipation
If you have a suprapubic or indwelling catheter it is important not to become constipated. The bowel lies close to the bladder and pressure from a full bowel can result in an obstruction to the flow of urine down the catheter and sometimes urinary leakage through the urethra.
A diet consisting of plenty of fibre will prevent constipation. Some examples are: fruit, vegetables and wholemeal grains. If this continues to be a problem after trying a high fibre diet then please see your clinician. They may suggest taking a laxative to help prevent this.
8. Start a gratitude list
When you have been chronically ill for a long time it can be easy to focus on what you have lost rather than what you have right now.A gratitude list can help with this because even though you are ill there are still some things in the day that you can be grateful for.
For years I was in self-pity and struggled to accept my catheter and illness. I could not get out of the dark hole I was in that felt like I had no future. One of my friends suggested every night to write a list of everything I was grateful for that day. At first, when she suggested this I felt angry thinking what have I to be grateful for. However, I begrudgingly started to do this and something changed in my thinking. Instead of finding the negative in the day I was sub-consciously seeing the positives. This change made living with my catheter and illness easier and all it took was to write a list.
Now, I have even found gratitude for my ill health because without it I would not have received all the lessons I have learnt and met all the amazing people that are in my life!
9. Set Small Goals
This technique can be extremely helpful to help find a sense of purpose again. Start off by setting small and manageable goals that can help build your confidence up. For example, doing the dishes, starting a hobby or maybe try meditating for 10 minutes can be examples of some small goals. Setting goals can help with motivation and can instil some hope for the future. The key is to keep them attainable.
So these are just some suggestions that I found helped improve my life with a long-term catheter. I hope you find them helpful and I would love to hear what has helped you? It takes a while to adapt to living with a long-term catheter but with some creative thinking, you should be able to continue doing some of the activities that you did before having a catheter!
This is a sponsored post with Aeroflow- do check out their incontinence supplies here.
Hello all! I’ve had quite a few of you ask about google analytics recently. If you’ve applied for a campaign, you’ll know I ask for stat screenshots-and lots of you have asked if you can use WordPress or other stats instead.
Google analytics is a little tricky to navigate but it is industry standard when it comes to blogging. WordPress is roughly accurate but can very easily be a few hundred or a few thousand out. That’s why, when it comes to blogging, Google Analytics is always the approved method and it does put you at a disadvantage in the long-run if you’re not using them (well in my opinion anyway)
Today I thought I’d share a few of my favourite blog posts around Google Analytics in the hope it helps you set things up on your blog.
For those of you who prefer to use the ‘Blogger’ platform instead, check out ‘How to connect your blogger account to Google Analytics’ from General Assembly. There are some useful step-by-step instructions from which you can easily measure audience reach, visitor behaviour, tracking to your site and so much more.
I hope you found these posts useful- let us know over on the Facebook group if you still have any burning questions about Google Analytics; and we’ll do our best to answer them!
One of my tips for living well despite Fibromyalgia is to “have Fibro, do it anyway”.
My biggest dream, since I was a young teenager, was to write a book. I thought perhaps I might not be able to, because once I have put in my hours on the computer for my work, my neck is done for and my brain fog is sky high.
However, for the past five years, I have quietly plugged away on my blog and amassed some content there.
Here’s how I manage blog posts:
Ideas come either in snippets or fully formed – I write these down in Evernote, on my phone, wherever I am.
When I have the ability, I go to the computer, edit and format the post.
I then schedule it on the blog with the image my lovely brother makes for me.
After I had my second baby in 2016, I decided I really wanted to write a book about pregnancy with fibromyalgia. But with the sleep deprivation and the flare up from pregnancy and labour, I wasn’t in any condition to do it. So the blog posts I had collated sat in a document waiting a little longer.
In November 2017, I decided to take part in a November writing challenge with a group called Blogger to Author, in order to get my pregnancy book written. Once I set aside a little time to gather the new content and write the extra bits I wanted to add, it was written very quickly. My brother Luke, a formatting star and my editing guru, edited and formatted it for me. He also made the amazing cover. By the end of November I had published my book: ‘Fibro Mama: Pregnancy and Fibromyalgia.’
Melissa Reynolds – How I Wrote Two Books with Fibromyalgia
Around this time, my son started a few hours a week in care as I began to apply for jobs. I decided to take this time and get my main book off my chest once and for all. The book where I share all of my research and experience with fighting Fibromyalgia
By the time I got to this point, there was a 15,000 or so word manuscript sitting around of my blog posts that I thought I would like to have in there.
Here’s how I went about it from there:
Edited what I had, extensively.
Created a list of the chapters that I wanted to add.
Slowly worked on these extra chapters.
Sent my manuscript to my brother for editing and formatting.
Performed the last edit myself while sitting on my couch with my heat pack, reading on Kindle as most people will.
Had a few people read it for any glaring errors.
Gave myself a pep talk as I freaked out that no one would like it.
Received very bolstering feedback from my early readers.
Checked it over thoroughly again.
My brother loaded it onto Amazon with his beautiful book cover.
Then I learnt that it isn’t enough to write a book – although that was very hard work! I had to tell people it existed so they could read it!
So I then:
Wrote a post about it on my blog.
Shared this post on my social media.
Shared some videos on Facebook talking about the book.
Created some video content where it could genuinely be mentioned.
Wrote a newsletter for my subscribers – because it isn’t all about my book.
Asked some lovely chronic bloggers if they would review the book for me.
Basically told anyone who would listen that I wrote a book (!) cue the praise here!
Did a happy dance when my proof copy finally arrived (I am at the bottom of the world in New Zealand so it costs like $15 and 15 days to get anything physically from Amazon *sigh*)
I didn’t always remember my self-care mechanisms. I burned out a little, I had a three-day flare and developed a nasty ulcer in my mouth that made eating difficult. But I was profoundly happy to have done it.
So if you have a chronic illness, and you have some goals that are sitting there waiting for your attention, please just get started in some way. A little at a time still gets things done.
Here are some top tips from Bree (in the black hat) who writes at 3sistersabroad.wordpress.com. Be sure to head over and take a look at her blog for her latest posts…
Having several chronic illnesses, I have a checklist for when I travel. Whether its overseas or to another state here in Australia.
1. It’s very important to get the go ahead from your doctors. Mine have been very supportive in my quest to travel.
2. Have your doctor do a list of illness’ and medication on letter head. Make several copies and have one with your medication, and one with a friend at home. I also put one with my passport and one in the suitcase. If you’re on supplements, also get this put on the list as well.
3. Pack your medications inside a plastic zip lock bag and keep them in their original boxes. I use the largest size available. Take more than you need just in case of flight delays.
Image of the 3 sisters: Bree, Paula and Muriel
4. Pack your medications in your carry on luggage. Suitcases do go missing or come a day late from time to time.
5. Take your prescriptions with you. Again in your carry on luggage. This is just in case your delayed getting home.
6. Pack some snacks in your carry on baggage, especially if you have dietary requirements
7. I always have packed in my carry on a clean t-shirt and underwear. We were delayed by 6-8 hours on our return from Europe before. So a shower and change of clothes is always nice.
8. My doctors always prescribes me antibiotics due to my lung condition. So I usually get both prescriptions made up. If you have a medication like I do – 28 days – I always get the whole 6 months made up before I go so I can take a full box with me. Never used it, but its always good to have on hand.
9. Take some Imodium, charcoal tablets and Gastrolyte. I have had to use Imodium a couple of times. So glad I had with me.
10. Most important of all… have fun! With a bit of preparation, your trip will be all that you expected.
We’ve had a ton of new members join us lately (hi, all!) and one thing many of them have in common is a drive to take their blog to the next level. Whether that’s to reach a certain number of page views, grow a following or make money from it. We reached out to the members in our Chronic Illness Bloggers Facebook group and asked them to share their top tips!
1.In her latest post, Sam Moss from My Mini Musings discusses the importance of reading and editing older blog posts. Not only do they help bring traffic back to your site, but refreshing and posting content you already have is an easy way to save time.
4.There should be a warning attached to this blog saying ‘do not read when you are hungry!”. For all the foodies out there, the amazing Jo Romero who writes a blog, comfortbites.co.uk delves into the world of food photography and shows us her 5 Favourite Food Photos and how she snapped them.
5.If anyone knows a thing or two about the Best Blogging Practice – it’s Lucy Dorrington. In this article on her website theparentgameblog.co.uk, Lucy tells us more about the mistakes made and learned along the way whilst blogging. If you’re looking to improve your writing ethics, this one is a must read!
6.Discussing all things blogging, business and working at home, Ellen Blogs is certainly one to look out for. Channelling everything from SEO checklist posts, to data management tips for small business owners, soak up the knowledge and read her latest blogs.
8.What is a useful blog post really without a little trumpet blowing? Our very own Chronic Illness Bloggers website is packed full of useful information on blogging. So whether you do it for a business or just for a hobby, our blog post on the importance of Pinterest Group Boards is certainly something to watch out for.
9.Hannah Gale is an honest blogger, there’s no BS where she is standing! Coming from a person who has recently had a baby, getting the balance between blogging and money making is hard. You’ll certainly take some knowledge away from her post on: 21 Tips To Take Your Blog To The Next Professional Level.
10.And finally! We couldn’t leave without sharing another from ourselves- this time from my own site The Bloglancer on 10 Reasons Why No One is Reading Blog. Just in case you need a bit of tough love.
Nikki Albert is a blogger living in Alberta, Canada with her common-law spouse and three cats. She runs the blog the Brainless Blogger, named after her most frustrating symptom of brain fog. Nikki writes about fibromyalgia, chronic pain, chronic illness, vertigo, and chronic migraines. She is also a freelance writer and fantasy fiction writer (fiction under the pen name Lil Hamilton). You can find her on twitter @nikki_albert.
I have had Fibromyalgia for twenty years, officially, and it is by no means an easy diagnosis to live with. I was diagnosed when I was twenty and presented with symptoms as a teenager. It is more common with women, but men can have fibro as well. It is often diagnosed later in life, but you can be diagnosed as a child. I developed comorbid conditions such as IBS, migraine, and depression all of which complicate management and treatment. I would say my fibromyalgia is moderate in intensity but the thing with FM is that it can be mild and it can be disabling. The comorbid conditions are what knocked me into a less functional capacity with fibromyalgia in my case.
What is it?
Fibromyalgia is a chronic syndrome defined by widespread muscle pain, fatigue, sleep dysfunction and cognitive dysfunction. Fibromyalgia is abnormal pain processing that involves an increased sensitivity to pain known as hyperalgesia as well as allodynia and paresthesia pain. That is it, laid out right there in basic terms.
One of the most pervasive stigmas with FM is that it is a garbage diagnosis. Something you say when you have no other diagnosis to give. Yet there is more than enough evidence of central nervous system involvement with fibromyalgia to establish its validity as a syndrome. The cause remains unknown but certainly research has been honing in on some of the effects of the syndrome on the brain and CNS.
Hyperalgesia is a pretty major feature of Fibromyalgia. We feel more pain than normal, we feel it faster, and we feel it for longer with normal stimuli. Allodynia is a painful condition causing mild to intense burning skin pain. Clothes to a light breeze can be very painful with allodynia. It can occur anywhere on the body and can occur in bouts or be very enduring. I now have it on my upper back lasting for several months, abating, and then returning.
It is a constant fire that just drives me to distraction. But I have had it on the arms, thighs, and scalp before. Paresthesia is a puzzling sensation because it can be caused by so many other things. It is abnormal sensations such as tingling, prickling, burning, and even numbness. It can get very intense as well. I had it so severely and in such a location that my doctor did some back MRIs because of the way it presented but it was the fibromyalgia not another condition.
Due to its affects on the nervous system fibromyalgia has a myriad of symptoms one can experience. A lot of symptoms can manifest. The ones primary used for diagnosis and tend to be severest are the widespread pain, fatigue, sleep disturbances, and cognitive dysfunction.
People with FM often have delayed onset insomnia, frequent waking from sleep, difficulty falling back to sleep after waking, issues with attaining Delta stage 4 sleep, and therefore our sleep is often unrefreshing even when we feel we got a lot of it. We can have issues with sleep apnea, restless leg syndrome, and night-time muscle contractions (nocturnal jerks).
Insomnia has been the plague of my existence with delayed onset insomnia, frequent waking and very unrefreshing sleep. It is something that can really begin to drag someone down all on its own but certainly compound other symptoms like fatigue and brain fog.
It is widespread all over pain that can vary in intensity from mild to severe. It is a myth that people with FM have mild pain. People can be disabled by FM or have more moderate pain. And pain varies day to day like any other chronic pain condition. Pain can also flare up due to certain factors like weather, stress, over-exertion, illness, temperature fluctuations, and lack of sleep. Flares are much more intense and can involve other symptoms as well. They can knock us out for days or weeks.
Fatigue can be a heavy burden with FM and can range from mild to severe in various people. This as well can vary in the individual. Some people may feel more fatigue than pain, for example. It feels like you are dragging yourself through the day with a heavy burden on you. Standing alone seems like immense effort sometimes when the fatigue is severe.
The cognitive dysfunction with fibromyalgia affects working memory, free recall, recognition memory, verbal fluency and vocabulary with the exception of information processing. People will notice the changes in concentration, focus, and short term memory issues. People with FM can have problems remembering words to using the wrong words in conversation and writing. I am not going to lie, this can be one of the most frustrating things about FM; this inability to think sometimes. Like your brain is full of molasses. Trying to think through a thick sludge.
There has been some research to suggest some people can experience short periods of remission with fibromyalgia. A long term study of 28 people showed overall functionality of people with FM doesn’t tend to change over time.( Study). The study did indicate that functionality might be preserved with exercise as a factor though. I have never experienced remission, but the thought that I could is interesting. I always wished I could schedule a pain break and it would be aprecious thing indeed if that spontaneously happened. Why some people do and others do not is also something that interests me.
What causes it?
There is no known cause or cure for fibromyalgia. There is some sense that it is triggered by a shock to the nervous system from accident, trauma or illness. But that isn’t the case with everyone. For me it was either idiopathic or it was trigger by my existing joint hypermobility syndrome that also caused me pain and insomnia as a child.
You learn a lot of things coping with fibromyagia but the main things are: staying within your limits, moderation, and pacing. I was told by a pain psychologist that you have to remember on good days pacing is equally as important. It prevents the boom and busts of pain. If you overexert yourself on good days this can lead to flares of pain, so you must pace on the good days to prevent less booms of pain. Of course there is the ‘I have no idea what I did’ Flares so sometimes flares happen we have no control over at all.
You have to know where your limits are and maybe nudge them from time to time but not exceed them. This means not fear of doing things but being practical about your limitations when doing them. Sometimes you exceed your limits anyway because the limit isn’t a firm line that doesn’t change. It can be different on different days and we have to constantly monitor where we are at to know what we are capable of. When we do have a flare the best we can do is take care of ourselves and do our self-care to manage the pain and symptoms.
Today’s guest post is by Laura Tietz-who blogs about her life with endometriosis over at Ribbonrx. You can also find her on twitter @ribbonrx
Laura has teamed up with Bathing Solutions’ Disabled Identities Campaign (a fantastic project that we’d encourage all our readers to checkout) to talk about the concept of disability and whether she considers herself disabled. Take it away Laura…
Disability is a difficult concept to embrace because it means something different to everyone. Is one disabled if they can’t walk? If they can’t see or hear? What about if they can’t work due to a medical condition?
First off, let me say that there is no right or wrong answer to any of these questions. I believe being disabled depends on the perspective and specific situation of the person in question.
Take Umber, for example. This young lady has endometriosis and is featured as part of the Identities Campaign. What does being disabled mean to her? Does this “label” of disability match up with what she believes a disability is? I’ve embedded the video so you can watch her journey….
Umber Ghauri - Identities - Vimeo
In the video, Umber says, “Disabled is a word that I’ve kind of recently accepted as being part of my identity.” She speaks of how the disabilities she has aren’t visible. This is certainly a major truth of endometriosis. Yes, you can see her surgical scars on her stomach, but other things like pain and tiredness aren’t necessarily visible, nor are they considered a disability.
Yet endometriosis is a condition characterized by pain, pain that is often severe and incapacitating. Some women experience this horrific pain only during their menstrual cycle, while others are in pain nearly every second of every day. As Umber notes insightfully of her painful condition, “Your pain is part of your experience. It’s not something you can run away from.”
But is endometriosis really a disability? Am I considered disabled because I have endometriosis?
I was diagnosed with endometriosis in June 2014 after having a laparoscopic surgery to investigate the cause of my ongoing severe pelvic pain. By this point, I had been unknowingly suffering from endometriosis for 14 years. However, this surgery was unsuccessful in treating my endometriosis because of the type of surgery that was performed. While I waited months for a second opinion from a surgeon 700 miles away, I was nearly incapacitated with pain.
One part of my job description as a pediatric hospital pharmacist was to participate in medical rounds at the bedsides of patients, which could take anywhere from 1-3 hours depending on the census. This involved a lot of standing and running around to different units in the hospital. I was in so much pain due to my endometriosis that I was unable to perform this duty. So I spoke with our scheduler, who had no problem having me work a night shift position processing medication orders and checking drugs in the pharmacy satellite until I could get back on the floors after my surgery.
Two years later, the pelvic pain was back (ultimately for a different reason than endometriosis, but no one knew that at the time.) While I awaited yet another surgery, I informed my manager I wouldn’t be able to round until after the surgery because standing for so long was far too painful.
I was summoned to my manager’s office to receive some paperwork to fill out for my absence related to my upcoming surgery, which was still two months away at this point. However, we also had a conference call with our HR rep, who said I had to fill out ADA [Americans with Disabilities Act of 1990] paperwork since I claimed I wasn’t able to round.
Being told I needed to put ADA paperwork in place made me feel ashamed and angry. I wasn’t disabled! I was being forced to fill out disability paperwork just to be excused from doing a certain part of my job. They wouldn’t just take my word for it; they wanted proof from my doctor that I was in too much pain to stand for three hours. I hadn’t had to do it before; I was just not assigned to that position for a few months. But I sat in my boss’s office and sobbed as we discussed with HR that I had to fill out the paperwork. I felt like they didn’t believe me when I said I was in too much pain to do those duties.
In my mind, I refused to consider myself disabled. Part of this stemmed from the fact that my so-called disability was essentially invisible. I thought if anyone found out that I had the “audacity” to claim I was disabled, I would be labeled a hypochondriac. In Umber’s words, “Having an invisible disability can make you feel or appear selfish and that can be a really difficult thing to swallow and come to terms with.”
But I learned something through this process. I learned that the definition of disability is actually extremely broad. I didn’t identify as being disabled before this because my views of disability didn’t match up with what society says disability is. Or, to put it in Umber’s words, “How disability was presented to me throughout my life didn’t seem to fit with what I was experiencing.” I wasn’t able to do part of my job because of a medical condition, so I was put under ADA as protection so I couldn’t be discriminated against or fired for not being able to do that part of my job.
It’s taken me a long time, but I now accept the label of disabled. And I think that, when they are ready, women with endometriosis should accept the fact that for them, the condition may mean they are, in fact, disabled. There is a certain freedom in this realization. As Umber notes, “The internalized stigma is this massive barrier and once you start breaking it down, you can’t go back.”
*We have collaborated with the Identity Project (supported by Bathing Solutions) on this post*
Today’s guest post is by Sheryl; who runs “A Chronic Voice”, a health, wellness and chronic illness blog. She had a mini-stroke at 14, followed by multiple blood clots, seizures, heart rhythm dysfunctions and surgeries over the years. She also has a gore-tex band in replacement of a heart valve. She shares her experiences in hope that it raises awareness on silent disabilities, and to let others know they are not alone in this. You can follow her on Facebook, Twitter, Instagram and Pinterest.
*Trigger Warning: Mentions of suicide, suicide ideation, and depression. This article is based on my personal experiences and is not to be taken as medical advice.
This is Just One of Many Methods I Use to Combat Depression
I’d like to preface this piece by saying that this is just one of the many methods I employ to combat depression, and the lack of motivation that comes with it. I do have days where I just let myself be and lie in bed all day, which isn’t a bad thing either. Sometimes that’s necessary. Yet at other times, the opposite methods works too, and this piece describes how it helps me when that happens.
For the longest time, I had been trying to motivate myself to no avail and started to wonder if I had simply grown tired of life. I had reached a stage where, if given a choice, would pick a painless death over the fulfilment of my happiest dreams. What’s the point to life, when you need to deal with pain on a daily basis anyway?
I’m Not Alone
To my surprise, I realised that many others with chronic illnesses also struggle with this issue and that there was a term for it – passive suicidal, or suicide ideation. People like me aren’t actively thinking of ways to end our lives, but wouldn’t mind if we were to drop dead this very moment. You don’t have to worry about coming home to find me in the tub with slit wrists, yet I endure our days, rather than enjoy them.
A Clinical Cause
My psychiatrist believed that my lack of motivation stemmed from depression; in fact, it’s one of the main symptoms. Yet somehow I didn’t believe that medications could fix it. I mean, it isn’t a feeling like happiness, sadness or anxiety, and is more of a catalyst to action, right?
Well, after a year or two of trying various medications, a new drug, vortioxetine, became available in my hospital. She gave me a special slip of paper to collect them, and when my motivation climbed upwards over the next few weeks, I was astonished. Vortioxetine 1, my ignorance 0.
Thoughts that Emerged from My Dull Routine
While this unmotivated period in my personal history wasn’t exactly a bad one, it sure wasn’t great either. ‘Meh’ would be a fitting description. No matter the activity, I got through each day without much aim or desire. It wasn’t that goals weren’t attainable, but they either didn’t exist, or I wasn’t fussed about reaching them.
This gave me a lot of time to think about motivation and all its connotations, and my personal conclusion is that it’s overrated. Sure, it’s a powerful catalyst that keeps you going, but you can still get there without it, albeit with less enthusiasm.
What Motivation Means to Me at Present
My current take on motivation and life is to ‘just do it’, no matter how I feel. Purpose can come later, but regret is always too late. It’s an investment in myself, in hope that one day I’ll be able to enjoy the fruits of my efforts and patience. I’m sure the vortioxetine helps a great deal, but it’s also a thought I hold dear regardless.
Feelings do influence our actions a great deal, but they’re not always real or right. How I cope now is to set my emotions aside, and focus on getting things done anyway. Deep within us all there lies a compass which always points in the direction of life. It’s what we’re drawn to by instinct; even a baby gravitates towards it without thought. Our passions are the lighthouses which signal the way, even on the darkest days. They may be a little dim in this depressive fog, but keep your eyes peeled, for they are there.
When Meaning Failed Me
I used to believe that having a reason to live is what keeps a person going, but this perspective failed me once severe depression entered the picture. When it did, everything that once brought me joy seemed meaningless, even frivolous.
Now I just get up and write that blog post, finish my work, do the laundry. I try not to overthink them. I don’t need motivation to clean the house – I still have the capacity to complete this task even without it. Of course I do get bad days where I’m in a pain flare, and I do stop to rest, then. There is a difference between getting things done, and not being able to do so due to the reality of certain situations. It’s important not to get them mixed up!
When Dark Thoughts Resurface
While thoughts such as ‘I just don’t feel like doing anything at all’ still surface, I’ve decided that I’ve given them too much of my precious time and consideration. I try not to struggle against the feelings of hopelessness. They can follow me around in sulky silence like a fly at the border of my brain, while I get my tasks done. I may be moving at a crawl, but I know that I must keep going, even if I think there’s no point to it.
Having said that, feeling aimless in life for too long is never a good thing, and you need to work with your therapist in times like these. They are there to guide you back onto the right path, because sometimes our brain gets confused, and our perceptions become distorted.
Live Life to the Fullest, Anyway
We’re supposed to gain clarity and wisdom with age, so perhaps one day we’ll understand what it all means. How satisfied will we be if we looked back upon our lives, then?
But if we are keep working on ourselves as human beings right in this very moment, we can still end our journey on a good note. It’s not uncommon to hear someone say, ‘he lived a great life’ or ‘she was an amazing person’, after they have passed away. Even in my depression, I was able to recognise such facts.
So live your life to the fullest no matter how you feel. It isn’t so much about conquering physical mountains, as overcoming the ones within us that block out the light. Travel at your own pace and time, but move towards it anyway. Deep down in our hearts, we’ll know that we lived a good life, despite how we feel or think.
What other methods do you use to motivate yourself when feeling down and defeated? I would love to learn some of your coping strategies, too!
“Success is not final, failure is not fatal, it is the courage to continue that counts.” – Winston Churchill