POTS (Postural Orthostatic Tachycardia Syndrome)
HOW TO style HAIR with minimal energy and so we can save energy for the important stuff!
(I know hair loss is very common with Chronic Illness. In fact, I lost 2/3rd of my hair a few years back and had to cut it all off. Please do not be discouraged if you are experiencing this, I know I was, but it is very possible your hair will come back.)
In the last few months my levels of pain and exhaustion have hit a whole new high. This has left me pretty much bedbound most days. Then awake and restless at night. Alongside all that, my Gastroparesis has flared, meaning I’m nauseous almost all the time. My stomach feels full and bloated and eating, or even drinking, causes severe pain. When everything piles up like this it’s hard to cope. I found myself breaking down and sobbing on an all too regular basis.
I’m already taking slow release Tramadol, Paracetamol and Codeine for my pain. I also have Gabapentin for nerve pain and other issues.
Please note, it is not generally advisable to take Tramadol and Codeine together. I have special permission from the pain clinic and have been given clear instructions on safe dosage. Please don’t ever take medication that is not prescribed to you, or at a higher dose than prescribed by your GP.
I cannot take anything Ibuprofen based due to my IBD, nor can I take many of the anti nausea medications that are on the market. During my last Gastroparesis flare my GP tried me on many of these medications, they either didn’t work, upset my bowel, or worse. What could be worse? Giving me the symptoms of a brain tumour, that’s what. My body reacts to things in very weird and wonderful ways. Waiting for my test results to come back after I’d been told I was displaying all the signs of a prolactinoma was one of the most terrifying experiences of my life, one which I do not intend to repeat.
So, as you can imagine, my options are now pretty limited. Basically there’s only one thing to move up to. Morphine. Be it tablet or patch form, it doesn’t matter. That’s the only thing left. I discussed this with my husband. Yes, I want to feel better. Yes, I want to be up and about more. But Morphine? I’m thirty years old. Do I really want to put my, already dysfunctional body, through that? I know that Morphine is a strong pain relieving option. But I also know that any pain relief doesn’t seem as effective on me as it is on others, this could be down to my dodgy collagen. Even in hospital when I’ve been given Morphine intravenously, it’s not had a major effect. I never ever get spaced out or super relaxed. It just doesn’t affect me that strongly. So I’d be putting my body through all that stress, for a minimal effect. I don’t think it’s worth it.
But what other choice did I have? None. Or so I thought. Soon after our conversation my husband saw an article about the Medipen which he sent over to me. Basically the Medipen is a vape machine which uses extracts from the Cannabis plant, combined with coconut oil. The extracts are completely devoid of any of the chemicals which cause the feeling of being ‘high’. They purely contain the chemical which has the most benefits, CBD. I’m not going to lie, I was wary. Very wary. Cannabis has a lot of stigma around it. Then add to this the fact that you inhale it in a vape machine, meaning you look like you’re smoking. That was too much.
I’m not anti Cannabis. I don’t believe it’s a big evil drug that is bringing it to its knees. Honestly I don’t. Used in the correct way, I can see why it could be popular. However I am anti smoking. I do not smoke, have never smoked, and have no desire to. I’m not going to lecture people about their life choices, but in my opinion my body has enough wrong with it without me adding to the list. When you think of Cannabis that’s what comes to mind. Smoke. Lots and lots of smoke. Spliffs, bongs, hash brownies. But mostly dingy rooms full of pungent acrid smoke. That’s the stereotype. The stereotype that is widely spread and etched into people’s minds. But that’s not me. I’m a mother. A none smoker. A disabled member of the community just trying to make the best of my life.
My initial reaction to the Medipen wasn’t great. But I read the article. I researched. I looked on their website. Mostly I checked out the reviews. Page after page after page of people thanking the company. People with Cancer, MS, Chronic Pain, Chronic Fatigue, Insomnia and bowel complaints, all were seeing results! They were gushing about their great experiences. Better sleep, less pain, more energy. The reviews were astounding. Many even called it life changing. My viewpoint started to shift. Reluctantly I discussed it with my doctor. Terrified by his reaction. What if he thought I was a pot head? I couldn’t believe my ears when he told me to go for it! Recently another patient of his had tried a similar product and had excellent results. He agreed it was time I started thinking outside the box in order to improve my day to day life. Wow! The (unofficial) go ahead from my doctor!
That night I contacted the company and arranged for my sample. I’ve been anxiously waiting for it ever since. Desperate to try it, but afraid the hype was too much to be true. Honestly, I was afraid to even hope. As for the stigma? I put it out of my mind. I told myself, who cares what other people think?! I need an improvement in my life. I cannot keep going like this, and I don’t want to take opiates. Besides, as with stigma about anything, we just need to raise our voices and educate. Show people they’re wrong. Highlight the true facts of the matter.
My Medipen arrived this morning. I’m looking forward to seeing how I go with it, and updating you all on my experiences; from my initial reactions (including reactions to it from those around me) to the results of longer term use. Here’s hoping it’s all positive!! I’m just happy I actually have something to place my hope in for once.
I remember having a dream as a small child. I was with a circle of adults around a fire and there was something that they were not telling me. I awoke feeling cross and very frustrated and the memory of the dream lingered…
As a young, able-bodied adult, I left home and did a degree in Design Representation (modelmaking). I commuted into London to work in various workshops. I took up Live Roleplaying, Yoga, Tai Chi. Work stress made me change course, learning Reiki on the way. I gained a Diploma in Montessori Directress (preschool education), commuting up to four hours a day.
Marriage, motherhood and moving house followed. Pregnancy was wonderful but my daughter and I are lucky to be here and nobody could tell me exactly why my body went so wrong.
Summer, 2012: I’d brought littl’un to a friend’s birthday party. The garden was full of fun – crafts, facepainting, treats. Whilst my daughter was having a great time as a dinosaur, I grabbed some nibbles and went to chat with the other mums. However, I felt wrong. Dizzy, clumsy, finding it hard to get my words out or find them at all, I sat in the shade quietly promising myself I’d see my GP. This just added to a growing list of niggling little things they couldn’t find a cause for.
I’ll save the whole diagnosis story for another time, though, as what I’d really like to get across is just how disability crept up on me. It was the fatigue that got to me first. I’d had it for years without realising that it wasn’t normal to feel like this. At school, at Uni, it was just put down to growing and learning. My first jobs – commuting, working long hours, surely being this tired upon waking was simply a result of that?
As a new mum, again, exhaustion had an explanation. I’d joke about having ‘mumnesia’ along with the other new mums, but my forgetfulness didn’t go away as my child grew.
I’d walk my daughter to playgroup, to pre-school, down the same village road I still travel. She started school a bit further down the road and one day I noticed that I wasn’t walking straight. I started getting odd sensations or lack of feeling. By July 2014 I was using a walking stick to help me cope with involuntary movements, neuropathic pain and balance issues. by the end of the month I’d discovered how much clearer my head was when I borrowed a supermarket wheelchair. It also reduced the myoclonic jerks. By that September I was using a mobility scooter for most of the school run trips and by the following September I’d bought my Smartcrutches, having finally been diagnosed with EDS in August 2015 (confirmed by a geneticist Dec ’15).
I had to be patient, probing, persistent and proactive to help the medical professionals around me arrive at the complex answer to that first question ‘Why am I always a bit dizzy?’ and the cascade of other questions that followed. I’ve only just (in May 2016) been diagnosed with PoTS on top of the EDS etc.
Thankfully, the dizziness is manageable, the involuntary movements have all but gone (it made beadwork nigh impossible!), I’m receiving appropriate treatment, learning to pace well, brace appropriately and eat more healthily. I have to thank the online patient communities for a huge amount of support, information, understanding and genuine caring. You yourself might have spared a moment to write to me, hidden behind one of my aliases. Thankyou, whoever you may be, for your en-courage-ment. (I needed you to notice that word within a word there).
For the first 40 years of my life I had no idea that I’d been born with a predisposition to disabilty. I only had that vague, intuitive feeling since I was young that something was different about me. I’ve learned to love who I am (“…a very interesting person” I’ve been told more than once) and I embrace my life just as it is.
Yes, I have become disabled but through my journey of self discovery, I have also become empowered.
Here’s my story (reposted from My Website Mommy Can’t Dance)
Spanish-style music was playing in the background. It was unusually hot for October, but I could feel a slight breeze on my cheek. The nerves in my limbs were twitching like they wanted to get up and run yet felt like they were being held down by cement. My eyes were closed, but I could see lights dancing and swirling like waves of fireworks in my head. I vaguely heard a man walk by and comment in my direction, “I guess you can have too much fun.”
This was me—sprawled out on a table in the wine garden at Disney’s California Adventure Park. It was the nearest place I could get to after exiting a ride with my kids and sensing I was going to collapse. It felt like I was in a dream. I had no perception of time or the fact that I had been non-responsive for over two hours.
The paramedics that huddled around me were prodding me and asking me questions, but they seemed so far away and I was just too tired to answer. Too tired to open my eyes. Too tired to move my leg that had fallen asleep some time ago. In the back of my head I could hear a frantic voice whispering, “Something is very wrong!” But at that moment I was just too tired to even care.
Little did I know that this incident was the beginning of an illness turned disability that would change my life.
Postural Orthostatic Tachycardia Syndrome (POTS)
So what was this mystery illness? Postural Orthostatic Tachycardia Syndrome, also known as POTS. As my doctor explained, upon standing my heart rate increases much more than is normal. While this is a defining characteristic of my condition, it is not just my heart rate that is altered. POTS is a dysautonomic disorder. It affects the autonomic nervous system, which controls our bodily functions that we don’t usually have to think about, like heart rate, circulation, blood pressure, breathing, digestion, temperature, hormone production, etc. POTS can be triggered suddenly by a trauma or viral infection, as it was in my case. (I’d had a sore throat for a week and been under a lot of stress from work as we embarked on our family vacation.)
While many of my symptoms are present all the time, they are amplified when I’m sitting up and even worse when standing. Because of poor circulation and low blood volume my brain suffers from not enough blood and oxygen. My symptoms include brain fog, dizziness, migraines, chest pain, nausea and other gastric issues, temperature control problems, and extreme fatigue and lethargy. I get overstimulated quickly– movement, light, and especially noise really affect me. Additionally, my body overproduces adrenaline, causing intense tremors and muscle spasms.
Overnight I went from being a relatively healthy, active person to someone who could barely get out of bed.
Chronic Illness Affects the Whole Family
I have always been a go-getter and an overachiever– from dancing 4-6 hours a day and attaining valedictorian in high school to an adulthood of teaching group fitness classes, owning and operating a small business, and being a wife and a mother of four. To lose my mobility and functionality was devastating.
This condition was not just life-altering for me, it affected my whole family. I could no longer take my kids out for the adventures we loved, like going to the children’s museum or hiking in the mountains. I couldn’t go to important events like music concerts, dance recitals, or preschool programs. And the day-to-day limitations were even harder to accept. I could no longer make dinner, help kids with homework, or get them ready for school or bed. I oftentimes could not even get myself out of bed without collapsing. (My husband has found me on the bathroom floor more times than I care to admit.)
I was battling to come to grips with my new reality. But I was not the only one. My kids were also struggling to comprehend why I couldn’t do what I used to do.
Our family has a tradition of taking turns sharing good news and bad news each night at dinner. The nights that I could make it to the dinner table, I noticed a trend in the news my kids shared. My four-year-old twins started repeating the same news night after night. “My good news is that I love mommy. My bad news is that I miss mommy.” Even my 10-year-old daughter would say, “My good news is that mom was able to come out for dinner. My bad news is that mom is still sick.”
I have vivid memories of a meltdown my daughter and I had one evening as she was preparing for her dance recital. She came into my room so I could do her hair, yet I couldn’t even sit up on the edge of my bed long enough to do it—let alone make it to the recital.
Over the holidays, one of my twins rushed into my room so excited for me to come see the Christmas tree he had helped decorate in the basement. After five minutes of him tugging on my arm begging me to come, and me trying to explain why I couldn’t simply get up and walk down the stairs, we both ended up in tears.
These are just a few of many examples.
Mommy Can’t Dance
As a mom, it is no fun to feel physically awful, but it is worse to know that your kids are suffering too. I hated that my illness was affecting my children. I needed a way to help them understand that my illness and inability to do things for them or with them in no way affected my love for them. Additionally, any chronic illness brings with it feelings of helplessness for the patient and the loved ones. I wanted my kids to find ways that they could feel helpful and loved. Thus, the book Mommy Can’t Dance was born.
While this book is near and dear to my heart, I recognize that I am not the only mom struggling with chronic illness. I hope this book can help other mothers and children that are similarly struggling.
The children’s book “Mommy Can’t Dance” is available at:
Available to buy via Amazon Paperback or Kindle.
For UK orders BUY BOOK here
For USA orders BUY BOOK here
CreateSpace Store
Support Dysautonomia International
In an effort to further the advocacy and research on POTS, the illustrator and I are donating all proceeds of the book Mommy Can’t Dance to Dysautonomia International a 501(c)(3) non-profit founded by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia.
http://www.dysautonomiainternational.org/
Happy Endings?
While I wish I could write a fairytale ending to my personal story, that is simply not the case. I have found a few medications that have helped, and I continue to pursue additional treatment options through trial and error. Like many others who suffer with chronic illness, I understand that this may be a lifelong condition. However, I refuse to give up or give in, and I hope to someday report that mommy can dance again.
I’ve always loved finding about about myself. I was a shy child with hardly any dress sense (though very sensitive to irritating clothes). I matured late, have always been something of a tomboy and absolutely love stories, be it in books, in films or making them up with friends.
I had a career as a professional modelmaker and another in preschool education as a Montessori Directress. Unfortunately, despite however much I loved what I did, I could never seem to physically do it for long. There was an invisible barrier that I kept hitting time and again.
I look back and wonder how I managed to do what I did? With the companionship of a loving partner that I’ve known since our college days, a wonderful family and finding my creative outlet in Live Roleplaying for twenty years. I learned Reiki to cope with stress and became a Reiki Teacher.
A few years ago though, a cascade of symptoms began. Dizziness, fatigue, clumsiness, odd sensations…the list went on. It took three years to reach the root of all my problems – even ones from my childhood and young adult life finally got explained.
At first, I thought it was MS. It looked ever so much like it but the MRI said ‘within normal limits’ and the Neurologist said ‘Functional Neurological Disorder’. What’s that? In a nutshell, symptoms without a clearly discernable cause. Go to FNDHope to learn more.
After that, it was Chronic Fatigue Syndrome, for which I did a very good OT led therapy course and made a group of friends. We still meet up when we can. Generalised Anxiety Disorder along with historical (i.e. in childhood) Social Anxiety Disorder was diagnosed next.
Eventually, a trip to orthotics to get some new insoles that I’d been prescribed after the weight of pregnancy left my feet a funny shape, led to me being told – for the first time in my life – that I was hypermobile. Sure, Yoga and Tai Chi teachers had remarked on my flexibility and I just took it as a compliment, a positive trait. I had no idea…
The slew of symptoms kept increasing, my mobility kept decreasing, my cognitive abilities kept glitching and I had to know why. So, I chatted on forums. I researched. I looked for the right words to craft the best questions to present to my GP. I printed out information and asked his opinion. My ferreting of information and determination to know what my body was up to finally led me, at the age of 41, to get a confirmed diagnosis of EDS (Ehlers-Danlos Syndrome). That in turn led to a realisation that I just might be autistic (my doc said “Oh gosh, yes!” when I asked if I might have Asperger’s). I’m still waiting on that one.
So, in the past eight years I have survived a perilous labour (though sadly, my womb did not), become a proud mum, started two online shops, closed a Reiki Practice, gained clarity about my orientation (still happily with my college heartthrob though) and transitioned from able-bodied to disabled. I now do the school-run on two Smartcrutches with braces or my mobility scooter.
This is the real me. I love making jewellery but rarely wear it. I only dress up to do LRP or Steampunk and usually have a less mature hairdo than my now 7 year old. I love making friends but need plenty of solitude. I’m happy to offer my experience to others in the hope that they might find it helpful. Above all and quite aptly, I’m a Conscious Craftie. ♡
Visit my Zebra’s Bazaare shop
Ever since I was little, I’ve wanted to do two things: be a writer, and work with animals. At one point I wanted to be a vet (even though I don’t particularly like the sight of blood), then I wanted to go into animal conservation. I’ve always loved the idea of working at a zoo. I had these big dreams of all the work with animals that I’d do when I was older. And in my spare time, I’d fulfil my love for writing, creating imaginary worlds where anything was possible.
But, when I was a teenager, I became really ill.
The strange symptoms first started around the age of seventeen, and all my doctors were baffled. Many just wrote me off as “an anxious female”, saying it was really common for teenage girls to faint for no reason. But, when I was nineteen, and after many tests and many doctors, I found out that I had some pretty rare conditions: I’d been born with Ehlers-Danlos Syndrome (a genetic disorder where the body produces faulty collagen) and, because of this, I also had several forms of dysautonomia (autonomic system dysfunction that affects almost every part of the body), including Postural Orthostatic Tachycardia Syndrome, meaning my autonomic system doesn’t work properly every time I’m upright—sitting, standing and walking.
These diagnoses explained a lot of the symptoms I’d been dealing with for the last few years. But knowing that I had these chronic conditions—EDS is genetic; it’s a DNA error—and that a lack of research meant none of them yet had a cure made me worried. I suddenly saw everything in terms of what I couldn’t do. And it was around the age of nineteen that I really understood what this meant, and the impact it would have on my life. With my conditions—the frequency of my fainting, and how my autonomic system no longer works when I’m in an upright position—unsurprisingly, I’m not allowed to drive. It would just be too risky. I don’t always get warning before I faint (and often my faints look like fits), and I get problems with my vision thanks to a lack of oxygen to my brain when I’m upright (sitting, standing, and walking).
But these illnesses also limit the amount of physical work I can do. Every time I’m upright my autonomic system malfunctions, and sometimes, I can barely stand up without getting a heart rate that’s in the 200s even when I’m doing nothing but standing (yeah, my autonomic system really doesn’t work thanks to POTS). I also faint frequently—which can do a lot of damage in itself, if I faint when I’m standing up—and I’m constantly dizzy; even moving my head from side-to-side can trigger an episode of autonomic dysfunction (during which I literally cannot do anything but lie still and wait for it to pass). And that’s not to mention how fragile my joints and muscles are due to the error in my DNA (Ehlers-Danlos Syndrome). I’ve dislocated major joints just walking—which sounds ridiculous given that I used to compete at athletics and cross-country running. But apparently it’s not unusual for those with EDS to be less affected by it when they’re younger, so much so that they don’t realise they have the gene until they get older and start experiencing the symptoms.
Pretty soon after my diagnoses, at the age of nineteen, I realised I most likely wouldn’t be able to work with animals as a career. Not only could I not drive myself to such a place of work, but also I’d probably end up collapsing or fainting after being upright for a little while, and I’d be too nauseated, due to autonomic dysfunction, to do anything. Just a short walk can leave me exhausted, thanks to this condition. And besides, my joints would be dislocating and subluxing the moment I tried to carry anything.
This is where my writing really came in.
Now, don’t get me wrong, I’ve always loved writing. It’s not the case that I got ill and then I started writing. No. I was writing seriously from the age of nine or ten; writing has always been one of my dreams. I had my first short story published at the age of sixteen, and when I was seventeen I completed my first full-length manuscript of 137,000 words. Writing is just part of me. It’s who I am and I have to write. It keeps me sane!
But, realising that I wouldn’t be able to work with animals, and that a lot of jobs would be nearly impossible for me to do in my current state of health, really made me focus on writing. It made me determined to be a successful full-time writer, because writing was one thing that my illnesses hadn’t stopped me from doing.
Even though I’m unwell and unable to move much due to my faulty autonomic system, I can still write. And I can fit my writing around the crazy number of hospital appointments I seem to have most weeks.
I’d always been a voracious reader, but now I read as much as I could get my hands on, and I wrote in every spare minute I had. It was escapism from my illness partly; when I wrote I wasn’t just this sick girl, I was a writer creating amazing worlds and I was living through my characters. But it was also something more. Writing was part of me. I had to do it.
I sent more and more short stories out until I had over fifteen accepted for publication, and then I began concentrating solely on novels. I wrote and then rewrote what I had, countless times. I set myself the goal of writing 2,000 words a day and I soon settled into a routine where I’d try and meet that word count. Some days I managed it. Other days (particularly if I’d had a bad episode, or a hospital appointment) I didn’t.
But I kept writing, determined to write a book that a publisher wanted. With every novel manuscript I wrote, I could see my writing getting stronger. And it was my fourth full-length manuscript that really worked—and four publishers made offers on it.
Aged nineteen, I signed my first book deal.
A year later, my debut novel, Untamed, a dystopian story about addiction, loyalty, and survival released from Prizm Books, the YA imprint of Torquere Press, in both paperback and ebook formats.
By this time, my illnesses were getting worse, and I was struggling to attend even a couple of hours a week at university. I was unwell all the time, and in a near-constant state of presyncope that could (and regularly did) develop into full-on fainting at any moment, as my consultants had yet to find any medications that helped manage my symptoms. I really began relying on my writing. And, it was during my third year at university, after I’d written a new manuscript and signed my second book deal, that I fully realised I wasn’t just a chronically ill person, I was an author as well. Sure, I’d realised I was technically an author during my second year at university, when my debut novel released, but a part of me hadn’t actually believed it then.
But now I realised what I’d done: I’d achieved one of my dreams—arguably my biggest dream—despite being chronically ill. I’d proven to myself that just because I was ill, it didn’t mean I couldn’t achieve anything. I could still be the writer I’d always dreamed of being.
Fast forward to the present day, and I’m 21, and my second novel, Fragmented, is set to release on 7th September 2016. Even though my health is still the same, and my consultants haven’t yet been able to find a way to successfully manage the daily symptoms of my illnesses, I’m currently working on the first drafts of two new manuscripts, as well as editing a third. And last month, I also managed to finish my degree—at the same time as all my friends. I’m pretty sure this was because I had writing to fall back on during those agonising weeks when I thought I’d never manage all the university work. Writing comforted me. And I’m so grateful that writing is one thing I still can do, when there are many things I’ve had to give up (horse riding, athletics, gymnastics, cross country, etc.).
This is why I won’t let my chronic illnesses stop me from being a writer—from being who I am. Because writing gives me an identity, it gives me something to hold onto. I may be chronically ill, but I’m also a writer.
And I have to keep writing.
About Madeline Dyer…
Madeline Dyer lives in the southwest of England, and has a strong love for anything dystopian, ghostly, or paranormal. Her debut novel, Untamed (Prizm Books, May 2015), examines a world in which anyone who has negative emotions is hunted down, and a culture where addiction is encouraged. Madeline’s second novel, Fragmented, is set to release on 7th September 2016, from Prizm Books.
For more information, please check out her website. Follow Madeline on Twitter, Instagram, Pinterest and like her Facebook page to receive the latest information about Madeline’s writing.
Buy Untamed by Madeline Dyer
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It has been said that I’m just constantly looking for new diagnosis. That I want to be ‘more ill’. I suppose, in a way, this is partially true. I am searching for another diagnosis. Maybe more than one. In fact, I’m devoting a hell of a lot of my life to it. But I don’t want to be more ill. Why would anyone want to be more ill??
You see, I just don’t feel my search is over. From the very beginning I have beaten my own path when it comes to my healthcare. Since being a child I knew there was something drastically wrong, but I was always met with disdain. Many doctors simply felt I was a hypochondriac. Even when I started collapsing I was told, to my face, I’d done it for attention. (Erm, no, floors are hard and painful. That is not how I would get attention thank you very much.) So getting a diagnosis was a huge relief for me. Getting several came as a shock.
You’d think I’d be happy with that. For a few years I was. But then I learned about my conditions. I realised that my body and the way it works does not properly fit the conditions I have. The medications I’ve been given do not control symptoms as they should. Many symptoms I suffer shouldn’t even be there. This does not sit well with me. The final straw has come when one of my diagnosis has been disproven altogether. So many symptoms cannot be explained at all. If they can’t be explained, how can they be treated??
So the search resumes.
Here’s the thing though. I’m not a hypochondriac. Nor am I a martyr to my illness. I do not want to prove myself more ill, nor be more disabled. But giving up on the search is like admitting this is it. This is as good as it gets. My quality of life now is the best it will be.
I’m not willing to do that yet. I want to try everything. Check every possibility and see if there is ANYTHING that can improve my health. That can make me a better mother and wife. I’ll go through the horrible tests. I’ll trial the medications. I’ll put up with the side effects. Because I hope that one of the tests will find the last missing piece of my puzzle. I believe that there’s still something, or someone out there that can help me improve. Even if it’s just 5%. I’ll take that 5% and I’ll use it on my family.
If not? If I’m wrong? Well, at least I’ll know I tried.
Would it surprise you if I told you that the majority of people whom I count as my true friends in life are people I’ve never actually met?
Of course I do have a couple of normal friends (literally two). Women who have known me since high school and I know will always be part of my life. Women I’m eternally grateful for. Plus, there’s my husband, who’s my best friend. But, other than that, the people I rely on are thousands of miles away.
How can this be?? Well, when living with chronic illness it’s hard to find people who understand. I’m very lucky, because those in my life always try their best. They treat me with kindness and patience and bring humour into my life regularly. But it’s hard. It’s hard for them and it’s hard for me. Hard for them, because no matter what they will never know what it TRUELY feels like to live in my shoes (something which I’m happy about, I would never wish this on them). Hard for me because I constantly wish I could keep up, or do better. Like I have to justify myself, even though I don’t.
So, as you can imagine, life can be very lonely and frustrating. Feeling alone whilst wrapped in the loving bubble of your friends and family is one of the most challenging feelings that accompanies chronic illness. Because of that, I sought out support groups. I wasn’t well enough to go out and physically attend one (plus finding one locally that matches my rare illness would be much like finding a needle in a haystack) the Internet became my searching ground. Facebook in particular.
I soon found several groups, and over zealously joined them ALL. Finally, people like me!! Except no. I soon found out that every group has a different dynamic, and some people in them are just craaaaaazy. It takes time to find a place to fit in. Over the years the groups I’ve used have changed and evolved. They’ve shrunk significantly. But now, now I have my friend base.
I’m in a small group made entirely of women. Those women understand me, and it is EVERYTHING. We support each other on hard days. We laugh. We cry. We take the mic out of this health crap in a way only people suffering can. We care for each other. Isn’t that what makes a TRUE friend? Knowing that someone is in your corner, no matter what?
No, I’ve never met these amazing women in person. But they know the bones of me, and I them. They literally saved me on my darkest days. My prison of my bed is not as lonely with their chat and banter. My achievements are less feeble to those who know what an effort just being is. My life is more enriched. I can enjoy my other friends and my family more, because I can air my frustrations with those who understand.
If you are living with chronic illness, I urge you, please find your friends. Find the group of people who do not judge, and will be there on those dark nights. People who will laugh with you at the dire straits you live in, and it’s ok because they’re in them too. In this day an age, nobody has to feel alone. Your friends are out there. They might just be on another continent.
Hi! I’m Hannah Reimers. I’m a 24-year-old geek who loves Disney World, penguins, my cat Buttercup and my two pet guinea pigs. I also happen to be a five-year Kidney Transplant Survivor and have recently been diagnosed with several other chronic illnesses, including POTS (Postural Orthostatic Tachycardia Syndrome) and Dysautonomia. As little kids, my brother and I created an entire imaginary world full of pretend friends. Eventually, I became a teenager, and our tales of talking cats and underground lands were literally pushed underneath my bed. When I was fifteen, I was diagnosed with a debilitating kidney disease called FSGS. Struggling with harsh treatments and an uncertain future, I pulled out the dusty stack of papers that described the pretend friends of my preteen years. As I fought for my life, I began reading the imaginary stories I had written as a healthy child. Before long, I started writing again, using my imagination as an escape from the daily monotony of needles, doctor’s appointments, and chemo-like medicine.
In June 2010, only one month after graduating high school, I received a kidney from my amazing cousin. Almost immediately thereafter, I began writing a fictionalized version of my real-life journey. It was incredibly boring, and I felt there was a huge piece missing. In March 2012, I finally came to my senses and realized I couldn’t tell the true story of my life without including the completely fictional stories of The Pretend Friend Association. The ‘PFA’: Part One- Story was published on December 21, 2012. Since then, I’ve published two or three each year. As of March 2016, the first seven books are complete and available for download internationally on Amazon. By December 2017, the series will be complete with twelve books.
A kidney transplant is a wonderful treatment, but it is not a cure; therefore, I will continue to fight FSGS for the rest of my life, even while I’m in remission. I recently discovered that I have been fighting several other chronic illnesses since my diagnosis with FSGS, including POTS (Postural Orthostatic Tachycardia Syndrome), Dysautonomia, and several long-term anti-rejection medication side effects. However, I am incredibly blessed to be an author!
Follow The Pretend Friend Association on Facebook for updates and more information, including samples of the books
Here is a synopsis of the series:
“There are so many fears that come with being a chronically ill teenager. My most irrational fear was that if I died, my characters would die, too.”
As children, siblings Todd and Anna Grace Shramere created an imaginary world. Guided by nine “Rules of Imagination”, Anna Grace wrote hundreds of stories about a fantastic realm, filled with imaginary friends, secret superheroes, talking stuffed animals, flying cars, and parallel universes.
Several years later, Anna Grace is thrust into the frightening world of hospitals and infusions when she is diagnosed with a potentially life-threatening kidney disease. The sixteen-year-old copes by immersing herself in the fictional stories she wrote as a child. As her health deteriorates, Anna Grace darkens her stories by giving her disease to one of the youngest imaginary characters as well as adding villains and criminals to the once-safe imaginary city. As Anna Grace fights for her life, the fate of the inhabitants of the Underground City hangs in the balance.
The first four e-books are available to download from Amazon here:
Amazon USA
Amazon UK
Amazon Canada
Amazon Australia
A lifetime ago I was a young and energetic (ish) uni student. I studied Surface Pattern Design and had a summer internship set up with Emma Bridgewater. I was going places. I knew my path. It involved graduating from my course and speeding off on my exciting roller coaster of a career. I’d continue to study. I’d travel. I’d make good money and fulfil my dreams.
But life had other plans. My health problems were already there. Though undiagnosed and less severe than today they were already dragging me down. Like lead weights tied to my heels they slowed my progress. Put me forever behind the pack in the race to qualify. But I was determined. I could do this! I would work extra through the summer and take my third year part time. Unfortunately my tutor did not agree. My tutor who also happened to be head of the faculty.
Because I only had a crohns diagnosis she didn’t see how all my other complaints fitted with that. Though I had mountains of doctors notes she felt I had just fobbed off uni. Though, with my allowed extra time, I was on track to pass the year she felt I hadn’t had enough taught time. Her recommendation was repeating the second year and doing the third year part time. I didn’t have enough funding for that. I told her so. I told her I’d have to leave. She stood by her recommendation.
It was then that my life altered. It was the that everything I’d hoped and dreamed of since being tiny crumbled to dust. This was the first major blow dealt to me by my health. The first of many. But this was possibly the one that broke me the most. Not only because it crushed my dreams. Also because my self esteem was shattered. Surely if I had any talent at all my tutor would have fought to keep me on the course? Supported me, as I’d seen her do other students. Not cast me out like last weeks rubbish.
That was almost ten years ago. At the time I believed I picked myself up and carried on, unfazed. But that’s not true. My self belief had taken a huge knock. From that day forward I stopped drawing. I didn’t paint. My sewing machine lay idle and was eventually gotten rid of. Looking back through my social media accounts there’s been many times I’ve sworn I’ll get back into my drawing. My art. But I never did. I remained broken.
Then I started this blog. The first creative thing I’d done in such a long time. Even though I wasn’t writing for anyone in particular it still terrified me. But I ploughed on. A few people seemed to enjoy it, and a friend asked me to share it on her site. (https://www.consciouscrafties.com/) Conscious Crafties is a selling platform for disabled people and their carers. It gives them an outlet for their creativity and helps them to build up their confidence and self worth. Not only did I join the site. I also joined the private group for the Crafties. Being a blogger for the site meant they kindly let me in.
I have to say that being around such a creative group of people has been incredibly therapeutic for me. Their makes are beautiful and inspiring. So inspiring that a few weeks ago I picked up a sketchbook that I’d been given two years before. For the first time in such a long time I sat and I drew. And I enjoyed it! I felt relaxed and at peace. Since then I’ve been to an art master class and enrolled in a life drawing class. Only once a month. But it’s something to look forward to. I’ve drawn more and more and even took some tentative steps into crafting.
I will never be the high flying designer is hoped to be. But thanks to the creative environment I happened upon in Conscious Crafties I’m now starting to enjoy art again. I’m starting to heal.
Here’s a few of my pieces I’ve done and a beautiful key ring which is one of the many items which can be found on Conscious Crafties.
I often read blogs about ‘What not to say to the chronically ill.’ On the whole I do think these are helpful for people who want to remain a good friend to those of us who have been blighted with these kinds of issues. (Huge credit to you for trying!! We know we aren’t the easiest bunch to be around at times, or at least I know that.) However I do find these blogs to be a little blanketing. Not all of us are the same. For example, many advise not to tell your chronically ill friend they’re looking good, because it implies you think there’s nothing wrong with them that day etc. Well, sorry to break the mould here folks, but I couldn’t disagree more. You see, most of the time I look far, FAR from good. In fact I look positively haggard. So, if by some miracle I’m actually looking good (particularly if I’ve made a special effort to) it’s lovely if people notice! Funnily enough I don’t want to look as sick as I feel.
So, here’s my list of things guaranteed to get MY back up, and why. Feel free to add your own in the comments section.
But you’re used to it.
This is usually in reference to the pain I live in, or some other aspect of my ill health. People often say this when they are ill, because clearly having these symptoms temporarily makes them oh so much worse than living with them day in, day out, for years on end.
Can I just clarify something here. You NEVER get used to crippling illness. Resigned to it. Yes. But not used to it. Learning to live with something is very different than becoming used to it. For example, if it became law that all men were to be kicked in the balls on the hour every hour, would their lives remain the same? Would they be happy? Soon this would become the new norm. After initial fighting, and resistance, the men would be resigned to their fate. But, would that make it hurt any less? No. Would it make the daily torture ok? Hell no.
What are you using that for?!
Often accompanied by ‘It makes you look like an old lady.’ Or also ‘You didn’t need it yesterday.’ As you may have guessed, this is referring to one of my mobility aids. Whichever one I happen to be utilising at the time.
Just know that using any of my aids is a huge disappointment to me. I hate to do it. But I will. If it means I can get out on a day Id usually be stuck home, or go on a day trip with my family, I’ll use it. But I’ll also struggle as long as I can without it. There is nothing shameful about using mobility aids, but it’s a personal issue I have, one that I’m trying to get over. I don’t want to feel embarrassed to use something I need. Your ‘joking around’ doesn’t help. Please stop.
It must be nice getting to stay home all day.
I’ve even been called lucky. Lucky. (Just let that sink in.)
I did not choose this life. Staying home all day everyday is not my idea of fun. Being stuck in bed is not my idea of life. I went to university. I used to have a career. I was going to earn good money and have a nice house. I was going to travel the world. There is not a day goes by I do not wish I could be working and less of a burden on my family. Oh, and there’s the crippling pain, exhaustion and plethora of other symptoms. They’re not fun either.
I wish I could be a stay at home mum.
This fits in seamlessly with the above comment.
You know what? So do I! I wish I could be a stay at home mum. At least the mum I always wanted to be. But I’m not. I’m an ill person. I’m a woman who listens to my daughter play whilst I lay in bed. I’m a woman who lets her husband run the home, and needs him to look after her. I’m a woman who’s absolute best will never be anywhere near what she feels she should be doing. Please don’t think I’m getting to be a Betty Crocker mum. I’m not. But I am giving my kids the best of me I possibly can.
You want rubbing out and starting again!
Someone also once kindly told me I needed putting down.
I know these comments are meant in jest. But, when someone is feeling worthless, this type of thing doesn’t help. It’s just another stick for me to beat myself with.
I feel so sorry for you.
There’s many other ways of saying this. But they all boil down to the same thing. Pity.
I don’t want your pity. Sometimes I have my own little pity parties, but they have a guest list of one. My life is what I’ve been handed. I’ll live it as best I can. Knowing I have your pity is not going to help me enjoy it. I’d rather have your friendship. Thanks.
So, that’s a few of my pet peeves. I know there’s many many more. This is a post that may end up having several volumes to it!! But I’d like it to be about more than just me ranting. What is like is for people to read this and for it to make them think. Are you being insensitive without realising it? Could there be better ways of talking to your chronically ill friend? Or even to people around you in general. People all have battles, and past hurts, we aren’t aware of. If I could give one piece of advice, it’s this, if you’re not sure if you’ve caused hurt, just ask. Knowing someone cares always helps.
A friend of mine recently posted about the idea of choosing a word to try and live by rather than doing a New Years resolution. The idea is simple, you choose a word and let that word factor in your approach to life. Or that’s what I took it to mean anyway.
Well, I do generally like to try and make a resolution at New Year, but this year I couldn’t. I didn’t want to put pressure on myself to achieve any set goals when some days I can’t even get out of bed. I did try. I tried to think of easily achievable things. Get dressed every day. Cook a full meal once a week. Go on a date with my husband once a month. But here’s the thing, even those simple mundane things are out of my reach right now. Many days I cannot even get out of bed. So getting dressed is out. (Apparently being dressed in bed is frowned upon.) Cooking a full meal and going on dates. Also Goliath tasks. If there’s one thing worse than having no resolution it’s having an ‘easy’ one and failing at it. Starting the year on a failure was not my idea of empowering.
Therefore I’ve decided to choose a word. My word is KIND.
Why KIND? Well one thing I really struggle with is low self esteem. Particularly in relation to my illness and the limitations it has put on me. But more recently in respect of my looks too. So I want to work on being KIND to myself. On appreciating that life is hard and I’m doing my best. Remember that my best is good enough and that I didn’t choose to be this way. This is not my fault.
I want to be KIND to my body. On good days I don’t want to push it too hard. I don’t want to resent my body for failing me, instead I want to remind myself that my body is still going, despite all its problems, and has given me two beautiful children. When I’m in pain I vow to rest, and try to put myself first.
I want to be KIND about my appearance. Instead of looking in the mirror and seeing a run down lump, I want to see a mother. Instead of seeing my weight I want to see cuddles with my children. Instead of seeing the bags under my eyes I want to see the smile on my face. A smile that still appears even through the worst pain. I want to look in the mirror and start to love myself.
Mostly I want to be KIND about my achievements. I want to recognise those times I do get dressed or cook a meal, and give myself a pat on the back. I want to realise that though I’m not the mother I dreamed of being, I’m the best mother I can be. I want to focus on what I do manage, instead or wracking up my failures and beating myself up with them.
Yes, of course I want to practice kindness towards others too. My husband and kids all deserve kindness. When I’m tired and in pain I will (try to) take a deep breath and calm down before I inevitably snap. I’ll recognise when my tone of voice may be taken aggressively and my words become harsh. At least I’ll try my very best to. But mainly I want to be KIND to myself, because this year I’d like to start believing I deserve it.
I’m getting really annoyed with how ‘PC’ the world is becoming, particularly in reference to disability. I am disabled, so I honestly think I’m entitled to a view here.
The way we speak of things these days has become so much about not causing offence, that terminology has just become ridiculous. For example, the other day I had to provide a ‘Fit Note’ to prove I am NOT well enough to work. Is it only me that sees how ridiculous calling it a FIT note is???
Firstly, I am far from fit. Secondly, fit note implies you are able and well enough to work. It seems that people no longer like the term ‘sick note’. Because sick is a dirty word. People shouldn’t be sick, especially not for long periods. If you are, hide it! This is where I think the problem lies. Saying you are sick, ill or disabled should not be a bad thing. It is a fact of many people’s lives. We need to use these words MORE. Not less. Rebrand them. Show that people can be sick, and worthwhile people. Accepting you’re sick and disabled isn’t accepting defeat. No, it’s accepting your life is going down a different path, and you’re ready to live if in a different way.
Here are a few other words that either make no sense, or are frowned upon for the wrong reasons.
Handycapable I cannot be the only person on the planet who thinks this just sounds ridiculous? My disabilities do not, in any way, make me more capable. Let’s call a spade a spade people. My disabilities are my handicaps. They make my life harder. Certain things I can no longer do. I am handicapped in areas of my life. Owning that does not make me weak. It means I’m a handicapped person who has enough fight and strength to rise above them. However, behaving as though my handicaps don’t exist just belittles how hard I work to live with them.
Cripple This seems to be another dirty word in today’s language. Unfortunately people have used it as a derogatory term. But it’s a fact of life. I myself am at times a cripple. I’m crippled by pain. I’m crippled by fatigue. I’m crippled by nausea. The list goes on. Luckily, I am not crippled all the time. But some people are. Let’s not sugar coat their struggle in life by being afraid of strong words. (If I catch any of my readers using this one in a derogatory way, I will personally come call you on it.)
Finally, but possibly most importantly there is the word that everyone seems to be afraid of…
Disabled It took me a very long time to accept this label for myself. Some felt I was giving up on life when I started referring to myself as disabled. There is a lot of stigma attached to this word. Stigma which is not helped by ‘Benefits Britain’ type programmes that portray all disabled people as work shy dole bludgers. If you see a person in a wheelchair you’re probably comfortable accepting they’re disabled. But a young woman who looks fit and healthy on the outside? Surely not! Surely she must be faking! This way of thinking is so ingrained that we, as the ‘unseen disabled’ often find ourselves thinking this of our own bodies. This is one of the main reasons I struggled with the label. But, being disabled is not tantamount to failing at life. It was only once I admitted I was disabled I found I could stop fighting my body and start working with it. For me, accepting my limitations has allowed me to finally work with my body and live better.
So you see, these words are not bad unless you choose to make them that way. Actually, they can be pretty empowering.
There is a place between asleep and awake. A place where you’re still dreaming, but acutely aware of things going on around you. The day to day noises of home trickle into your psyche, your senses are stirring. You can smell the world around you, and feel the breeze from the window. But you’re not there, not part of that waking world, not part of blissful slumber.
That place. That halfway house between asleep and awake. That’s where the demons live.
Some would say they’re bad dreams. But dreams fritter away into the ethos within a few minutes of waking. But not when you’re halfway awake. When your brain is preparing for the day. These nightmares are just real enough to seem true. Backed up by the solidity of the real world slowly coming into focus around you, they imprint like memories. When you do finally wake you find yourself wondering ‘did that just happen?’
Recently sleep has been very illusive to me. The halfway point is about as far as I get. I doze, in what should be blissful abandon. But alas, I’m plagued by demons. Demons of my worst fears. This morning, I was crushed by the illusion of my father dying. During my afternoon nap, I went through the traumatic birth of my baby. Alone and scared. Both times I woke in a blind panic and floods of tears. Both times the images plagued me for hours after. My mood today has been morose to say the least.
So now it’s late at night. The darkness has drawn in and everyone is calmly sleeping. Except me. I’m here writing to you. Can you do me a favour? If you see the sand man please ask him to hook me up with some nice dreams? Because right now my body doesn’t want to switch off. I can’t help it. Nobody wants to sleep when they know the demons are coming.
Invisible illness. INVISIBLE illness. I N V I S I B L E illness.
Nope. I still don’t get it. How can my illness be invisible? Is it because of my invisible wheelchair that I use on my invisible bad days? Or even on my good days when I need to walk further than a few feet? Maybe it’s due to my invisible lift, and invisible adaptations within my home? Or it could be the invisible hours I spend in hospitals?
No. They’re not invisible. But you don’t get to see them. I hide away at my worst. I put on a smile to hide the pain. I wipe away the tears, and rarely do I share my hospital journey anymore. So is that what makes it invisible?
No. My illness is not invisible. I am not secretly disabled. You, my healthy counterpart, are blinkered. Please, I’m asking you, take off the blinkers. Look closely.
Look at the way my hair is roughly brushed, but not styled. See how I don’t wear makeup, those dark circles under my eyes. Notice the winces and sharp intakes of breath when I move. The stumbles, trips, slurred speech.
See how my life has changed. Where my job and social life has gone. See how my friend circle has reduced. See how rarely I leave the house. How much I desperately want to.
Just look beyond my smile.
Our illness is not invisible. It’s just not quite as easily seen as some other disabilities. But often, we feel invisible. Forgotten. Left behind.
So please. See my disability. See how I’m still desperately trying every day to live around it. But most of all, see me. See us.
Don’t get me wrong, I’m incredibly grateful for the benefits system here in the UK. Without it, I honestly don’t know where I’d be. (Yes I do, on the streets.) But what I hate, is the stigma attached.
So here it is. I’m 29 and I claim benefits. I’m probably never going to work again. At the moment my other half is also claiming benefits. Why? So he can look after me. Previous to that he had a well paid, full time, job. Now he’s stuck with my label of ‘Scrounger’.
Firstly, I’d like to address my husband (and anyone else on carers allowance). I’d like you to adjust your thinking a little here. If my husband wore a uniform and went round to a lovely old dears house five times a week, bringing home a nice little wage, he’d be employed. But because he lives with the person he’s looking after and gets paid by the government he’s a Scrounger? I think not. My partner works just as hard, if not harder, than anyone else. He is here for me 24/7 and the pay is a pittance. Honestly, life would be easier for him if he worked. He’s given up a career he loved, and most of his social life, to do this. So think about that when you assume someone who is a carer has the easy option.
Secondly, there’s me. I don’t work. I can’t work, and I’m not going to apologise for it. Why? Because it’s not my fault. It’s taken me a good few years to appreciate that I cannot control my health. I used to work. I had to leave when it was getting to the point I was collapsing in the workplace and unable to function at home. Even after that point I continued to try. I would volunteer at my daughters school so at least I felt I was giving something back. But one afternoon in school meant the rest of the week in bed. I couldn’t wash or feed myself. I couldn’t look after my child (who incidentally I had before becoming ill, but having a child whilst on benefits is a whole other debate), in order to function I had no choice but to give it up.
So now I don’t work. But, believe you me, it’s no picnic. Yes, I spend many days in bed. But it’s because I’m in incredible pain and sapped of every bit of my energy. Some days I make it out. But even then, with a smile on my face, I’m dizzy and in pain. (Which is best case scenario). Just because I don’t work doesn’t mean I have an easy life. I’d LOVE to work. I went to university. I was supposed to have a career. I wasn’t supposed to be a burden on society. I had a plan!
But the thing is, life happens. Health issues don’t care about your plans. So please, have compassion for those of us in genuine need of benefits. I can guarantee you won’t think worse of us than we have of ourselves. I wouldn’t wish my problems on anyone, but remember, disability can happen to anyone. Even people who think everyone on benefits are scrounging scum.
One of my conditions is POTS. It stands for Postural Orthostatic Tachycardia Syndrome. Even though there’s thousands of us POTSies out there, it’s still a relatively unknown condition that’s difficult to diagnose.
If you have a friend or relative with POTS you may choose to do some online research on their condition so you can better support them. (Big round of applause for caring if you do!) This is a lovely gesture, but please, only do this in order to learn. Remember we are all different, we often have intermingling conditions, and we have already tried EVERYTHING imaginable to get better. We don’t need Dr Google giving us unsolicited advice. Compassion, understanding and company is always welcomed though.
It’s the idea of understanding that’s prompted this post. Often I see POTS described as ‘an increase in heart rate of 30bpm on standing’, which is true. But it is oh so much more. Better articles will explain that living with POTS is akin to living with heart failure in the effect it has on your body. This is a little better at describing life for me. But unless you’ve lived with heart failure (which I hope you haven’t) you’re still not going to know how that feels.
So I thought I’d try to describe how POTS feels to me. Please bare in mind I have LOTS of random stuff wrong with me, so I apologise if not all the stuff I talk about strictly fits with POTS. It’s hard figuring out which ailment goes with which condition these days.
So first, the heart rate. Yes it increases when I stand, often reaching 154 and above. This isn’t bad for many people with my condition, who can go much higher. Luckily I’m not affected when seated, so I can still drive. When your heart is racing it feels like fluttering in your chest. But not sweet little butterflies, noooooo. When my heart races it’s like I’ve got a giant ass albatross in there! Soon, as my heart is going so fast, I start to get dizzy and lightheaded. My head and feet don’t seem to be part of the same body, and I’m almost detached from myself. This makes me clumsy and I often look drunk when walking, or I stumble and trip. One of my talents is tripping over nothing, the other is walking into things. Door frames, furniture, people, anything is fair game.
After being upright for a very short time (often immediately on standing) my body feels like it has lead weights attached, trying to drag me to the ground. Everything is heavy and I’m walking through waist high mud. My energy is sapped as it takes so much (three times to be precise) more to do anything. It’s at this point I’m usually clinging on to someone or something for dear life. If I’m not seated (or preferably laid down) in time, then my body will give out on me.
I’ve been told all the colour drains from my face and I crumple to the ground like a puppet that’s had its strings cut. What I know is all of a sudden the world shifts. Dark engulfs my vision and I can no longer keep tension in any part of my body. I used to think I remained alert, but having not realised a woman was screaming when my head connected with the floor in a local supermarket, I now appreciate that’s not the case. As the world swims back into focus its at that point the pain hits. Let me tell you something, floors are hard!! Pavement diving is not a sport Id partake I given a choice! I lie there, usually crying (I’m not sure why as I’m not upset) and shivering uncontrollably. I can’t sit up too fast or I’ll go again. But when I do, I feel as though I’ve been run over by a freight train for the rest of the day. I usually also end up with whiplash and sprains due to my other joint condition.
However, this isn’t the whole story. My condition causes my body to constantly be in ‘fight or flight’ mode. My autonomic nervous system (the one that controls everything you automatically do such as digesting, regulating temperature, circulating blood) is constantly on high alert. I am the human version of bambi in the woods. Because my body is constantly thinking danger is on the way it does some really stupid things. It sends blood away from my none vital organs, like my digestive system (because according to nature food is not vital, stupid nature) leaving them slow and sluggish. Or sometimes way way way too fast. Which is always fun. My thermostat is always off, so I’m either too hot, or freezing. Or, if I’m really lucky, both at once. My blood pools in my hands and feet, making pain I already get there, worse. Plus it turns them a rather fetching shade of purple. Then, as well as completely exhausting me, my lovely body won’t let me sleep. After all, could you sleep if your body was in constant high alert, waiting for a wooly mammoth to attack? (Fight or flight mode is a throw back from when we were cavemen.) I’ll give you a hint, the answer is no. No you couldn’t. You’d just toss and turn in bed, sweating one minute, freezing the next, and every now and again twitching for good measure. Just because.
So that’s the bulk of it. I know there’s so much I’ve missed out, but my eyes are struggling to focus (that’s a lovely symptom right there) and my hands are hurting. I hope that my description has helped you imagine what it’s like for us a little better. Maybe next time your friend with POTS is being cranky (me every day) or boring (again me) you’ll find it a bit easier to be understanding.
Sometimes I actively hate my body. Today is one of those times.
Yet again it has let me down. It has not lived up to its end of the bargain. It has promised me something and delivered only disappointment and pain.
It probably seems odd to you that I speak of my body in this way. Like an entity I do battle with. But that’s how it is for me. My body is my enemy. My monster in the night. My prison cell. My torture device.
I must be kind to my body. I must treat it with respect and not push beyond my limitations. I must rest when I need to and eat well, take my medications and generally do what I can to appease the beast. But what’s the point?
What’s the point when I do everything right, but still my body betrays me????
I do everything right yet I still end up with tears down my face.
The point is that I have to try. Maybe tomorrow will be better. Maybe tomorrow I’ll be joking about it all again.
Life changes when your health deteriorates. Suddenly you’re no longer living on your own schedule anymore. Every aspect of your life beats to the tune of someone (or something) else’s drum.
I used to choose what I did with my time, how many hours I worked, if and when I socialised, what activities I did to fill my time. (Because in those days time was something to be filled with limitless and varied options.) Yes I still had exhaustion and pain, but nowhere near the life sapping amount I have these days.
But now? Well, let’s just say, things have changed. My health decided to strip me of my energy, and my ability to work. With that went my social life, which doesn’t matter as I don’t have the energy for it anyway. Finally those time filling activities, they went out the window too. I’m sure you can guess the culprit.
So now I wait.
I wait for doctors appointments. I wait for tests. I wait for the results of those tests, so I can wait for doctors to decide what they want to do next. I wait for medications to work into my system, I wait to wean off other medications. (It’s an ever changing cocktail.) I wait for pain killers to kick in. I wait for my body to let me sleep. I wait for my husband to realise he can do better. I wait for my daughter to wish she had a fun mummy. I wait for the summer when my joints ache less. Then I wait for the winter when I’m less likely to collapse.
Everything is waiting. My life is waiting. Waiting for a miracle so I can ‘get better’ from my list of incurable chronic ailments.
I know what you’re thinking. Wow, that’s depressing!! Well yes. For a very long time it was. In fact, sometimes it still is. But luckily my husband assures me he will never get sick of me. My daughter (and step son) fill my days with smiles, stories, cuddles and laughter. My pets provide companionship whilst I’m stuck in bed. My few friends that remain are loyal and understanding. My new friends from various medical support groups are loving and funny. My good days are spent making the most of them as best I can with the people I love.
So I wait. But whilst I wait, I live. It may not be the life you have, or the life I expected. But it’s the life I have now, surrounded by the loving family I’ve created, who have stuck by me through the toughest of times. I’m happy with that.
Unfortunately I seem to find myself uttering those words FAR too often. The most recent time being this very morning when I happened to catch a glimpse of my mouth in the rear view mirror of my car.
Where once there were pearly whites I now seem to have teeth that are rapidly on the way to being a discoloured mess. Gutted does not even begin to cover it. (I did try to take a picture of them for you, but I looked like I had a tash, so that went out the window.)
I put up with a lot when it comes to my illness. Collapse in public? I’ll laugh that off. Have a camera shoved in various orafices? Sure! It’s all for a good cause. I’ve even pooped in a bag, collected a giant vat of urine and had a tube repeatedly shoved in and out of my stomach via my nose. Basically, what I’m getting at is that I’m pretty easy going when it comes to pride and dignity these days. But my teeth? I’ve always kinda liked my teeth.
Since I was little, people have always said I’ve got a nice smile. I’m not a pouty girl, and I hate it when people look miserable on photos. I’m always the one in the frame with the big goofy grin. How’s that going to look when my teeth are black and crumbling? I don’t know, and I’m not willing to find out.
This morning after the school run I scrubbed my teeth to within an inch of their lives. I’m going to stock up on whitening toothpaste and check what vitamins might be a good idea. If that doesn’t work? Well, I’ve got a dentist appointment at the end of the month, maybe I’ll enquire about veneers. (I’d even consider a denture over a murky grin!)
Up yours disabilities!! You may take my pride, but you will never take my toothy grin!!
