Category: Illness / Disability

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READER STORY – My colon ruptured on the table!

Karen Hunter - my colon ruptured on operating table
Karen Hunter crohns disease
Karen Hunter
Knits by Karen

When I was 25 I became ill, but they didn’t know what was wrong as all my tests came back clear.  Eventually they took me to theatre to open me up to see what was going on.  My colon ruptured on the table and I woke up with an Ileostomy, it was later discovered that I had Crohn’s Disease.  It was hard to come to terms with having to wear a bag for the rest of my life.  Over the next 13 years I was in and out of hospital for various procedures and operations.

In 2008 I was taken in so they could remove adhesions as they were pulling the stoma back inside me.  The operation went well and I was recovering, until 10 days later, when I was in an awful lot of pain, it turned out my bowel had strangulated itself, so back to theatre where they removed even more of my bowel.  I then contracted MRSA, septicaemia and internal bleeding.  Back to HDU, then transferred to another hospital, my mother was told for a second time that they didn’t think I’d make it through the night.  I did but I was in so much pain, it was put down to going through the operation, but it carried on for months and to this day I am still in constant pain, which has got worse and worse.

I’ve been diagnosed with Abdominal Cutaneous Nerve Entrapment Syndrome.  I am on a very high doses of pain medications, I have had a couple of Nerve Blocks which have given me short periods of pain free but when they wear off the pain comes back.  I have been told that they don’t want to operate on me because of what happened last time.  So this is me for the rest of my life, in constant pain, I haven’t worked since 2008 and it is doubtful that I will ever again.  That is why my crafting is so very important to me.

Knits by Karen - Abdominal Cutaneous Nerve Entrapment SyndromeI have knitted since I was about 5 years old, mostly for my sisters children or for charity.  A neighbour asked me toKaren Hunter - Crohns Disease knit a hat for her son and she was so pleased with it she told me I should be selling them.  It took a lot of persuasion but Knits by Karen was born, I sold by word of mouth.  I managed to get someone to teach me crochet as I’d always wanted to learn and things really took off.  I did a few Craft Fayres and I started getting lots of orders.  To me knitting and crocheting is keeping my brain active, I’m also speaking to people, something I had almost stopped doing when I became ill. I’m not able to do it all the time, but I find if I can concentrate on making a hat or cowl, it gives me something else to think about other than my pain.  I also got a Shih Tzi puppy 4 years ago and he has also helped me immensely.  If I didn’t have my knitting and crochet I really don’t know what my life would be like, a lot worse than it is at the moment, that’s for sure!
Karen Hunter Crohns Disease
crohns disease - Karen Hunter
Karen Hunter - Abdominal Cutaneous Nerve Entrapment Syndrome
Karen Hunter - Crohns Disease

 

 

 

 

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When your glass doesn’t seem “half full”…..smash it up! – READER STORY

Chronic Illness craft glass

23 years ago, I was an at-home mum with a fab toddler, Cameron, so I thought I’d have another baby. Half way through the pregnancy, I was admitted to hospital with some very odd symptoms. I packed knitting, crochet and cross stitch immediately.

A difficult 8 weeks later, when Roseanne was born, I was handed an A4 piece of paper, both sides were covered with a list of her problems.

Rose was then in hospital for nearly a year battling through no swallow reflex, heart failure, meningitis, a stroke etc etc .

During this time, with a hubby working away, toddler Cam and I went to bed around 7.

Fused glass Sheep Baubles for Sheep Bunting
Fused glass Sheep Baubles for Sheep Bunting

I would then wake about midnight. What to do?

So I started crafting-in-bulk! I’d always crafted, but during this time, as the sun rose, I would be found standing still in pjs, surrounded by cards, embroideries, paintings.

I trialled selling some, and reinvested any money into more envelopes and bags.

Once Rose came home, it was quite difficult to go out as she was tube fed 8 times a day, and often on oxygen and needing suction. So every nap I sewed, painted or glued.

Pet Memory Sun Charm
Pet Memory Sun Charm

Our house had a horrid damp cellar, but we tanked it and added heating and set up a nurse call system for Rose and here grew and grew my crafting haven.

As the years went on, many, many more hospital stays led to more manic crafting, both at home and often on the hospital wards too. It kept me sane (debatable). We even chose to have another baby, and Mackenzie was added to the bedlam of the Weir household.

 

About 10 years on, I was just starting to imagine going back to my work as a primary school teacher. Rose was still tube-fed, but overnight, and her medical emergencies were lessening. I was finally coping.

We were driving back from a cinema matinee. The car skidded on spilt diesel as we were going up a motorway slip road. The safety barrier flipped us and we rolled down the embankment. We landed on a path upside down, blowing out all the windows and crushing the car’s structure. The car then carried on sliding, and rolled into a canal .

Cameron dived 3 times and rescued Rose and Mac. Finally got my legs free and helped.

Unfortunately my hubby had been under the water too long and had started to drown.

He was left with brain damage.

Over the next 10 years he battled back, and can now walk and talk, and recently has actually begun driving again. It was an extremely difficult time, but again pj moonlight crafting, waiting room crafting and my now precious dungeon/cellar helped me through.

I had a kiln fitted and when life gets really hard, I go down, smash up glass, and then melt it back together.

About 3 years ago, as hubby improved, Rose also began to come on in leaps and bounds. At 17 she began to be totally orally fed, and at 19, even came out of nappies.

Beryl Weir, Crafts from the dungeon
Beryl Weir
Crafts from the dungeon

I announced out loud on a walk with the dogs, “This is going to be MY year”.

Yeah…

I found the lump 3 weeks later.

So 2 ops and waiting rooms and radiation and severe reactions to radiation.

By gum, I smashed up a lot of glass during that time!

 

I also started to take another passion, weaving, to a higher level, treating myself to bigger and better looms. Even took one into isolation for during my glowing therapy!

So now….Shhhhh….don’t tell the gods, but I’m having a ball!

Rock Pool fused glass coasters
Rock Pool fused glass coasters

My health and their health permitting, I work with glass in the morning, and fibre in the afternoon.

I spend my evenings combining the 2 into kits.

I’m teaching from home and do talks to guilds and crafty groups.

My crafts were only ever meant to cover their costs, so I reinvest any income into more luscious materials or gadgets.

Ain’t life grand!

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You know who your REAL friends are

Chronic Illness Friends

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.

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READER STORY – Kidney transplant survivor turned author!

Hannah Reimers, POTS Book Author

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

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Told pain was in my mind before diagnosis

Chloe Morante Crafts

Hi, I’m Chloë and I am 18 years old.
Here’s my story..

At the age of 16, I started with agonising pain in my ear which completely stopped me in my tracks. I visited the doctors constantly to try and find the cause of my pain but they had no answers to give. Months and months past and several more doctors appointments were made but no one seemed to understand the pain I was in and because they didn’t understand, they had no idea what was wrong. At first they wanted to treat me for basic things like ear infections etc but I knew 100% that it wasn’t anything like that. The pain was unbelievable, sharp electric shocks that shot through my face and ear leaving me in utter agony. I used to tell the doctors that it felt like “the pain was in my brain.” Luckily, I have a very supportive family so they pushed and pushed at the doctors to get me referred because I couldn’t live this way.. especially with no answers.

I was referred to ENT who did hearing tests, pressure tests and other basic tests of my inner ear, middle ear etc but nothing was found. Since they didn’t find any problem, they referred me to maxioral facial who did X-rays and scans but once again, no problem showed. After this, I was sort of pushed away by the doctors because nothing was showing and in their eyes, they had tried all they could. A year and more went by and the pain calmed down. I didn’t forget about it but I put it behind me till I had finished college and got the grades I worked hard for. A couple of months after college the pain was back with a vegencance. This time the pain was 100 times worse. Like before, the pain started with electric shock like pain, suddenly starting in my ear but this time it didn’t last for seconds, it lasted for hours, even days. On the 7th of September I handed my sick note in at work as the pain stopped me being able to go. My family couldn’t stand watching me in pain and having no answers as to what was wrong, all we did was panic. After more maxioral facical visits, they decided they wanted to send me to a Neurologist. Months and months went by were no appointment came through so my family decided to pay so we could go private and get seen as quick as possible.

My Illness is Real!

An appointment came through and it was the day to see the Neurologist. The neurologist diagnosed me with Glossopharyngeal Neuralgia, wow, there was finally an answer! Glossophraygneal Neuralgia is a rare condition where I have damaged nerves in my brain stem. There can be numerous reasons for this but one of them is that blood vessels in your brain press on the nerves and eventually cause damage. The nerve that is damaged is the one that controls your swallowing and pain can be felt in your tongue, throat, ear and other parts of your face. The pain I feel is mostly in my ear but since being diagnosed, I have felt pain in other places. I have since been put on numerous medications, Carbomazapine and Gabapentin but the side effects have been awful. I’m waiting for an appointment to see the Neurosurgeon for the second time as if the medication doesn’t help the pain.. the last resort is major brain surgery. The pain I feel has since stopped me from going to work as it comes and goes and it so unpredictable. It can be set off by daily things such as eating, brushing my teeth, talking and even cold air on my face. The pain is unbearable at times and can’t be helped by medication so I often take strong Cocodamol to knock me out to sleep when it starts. The pain in my ear is electrifying and burning to the point where I can’t move or talk cause little movement knocks me to the ground. Throat and tongue pain feels like I am swallowing razor blades and sometimes it’s impossible to even swallow my own saliva and I beg for a feeding tube. I’m nearly 19 now and learning my own ways to cope with the pain. I’m still off work as they have kept my position open for me but I am hoping and praying a miracle comes my way very soon! Until that miracle comes my way, I have unconditional support from my family and my boyfriend who keep me going day after day!

Happiness Found In Crafting

When feathers appear angels are nearMy love for crafts started at a very young age whilst watching my mum make her own clothes, curtains, cushion covers and anything she could think of! Whilst being at school and college, in my spare time, rather than going out with friends, I would sit at the dining room table, fill it with my crafts and indulge myself in all the buttons and sparkly things! When I left college and got myself a part time job, my crafts were sort of put aside as the hours I did went up and I was exhausted by the time I got home! (Partly because of my illness.) As I deteriorated and the pain got worse and my sick note was handed in, crafts didn’t even enter my mind and all I did was try and sleep the pain away. I didn’t leave the house as I physically & mentally couldn’t, but at the same time I was sick of the same 4 walls. After seeing the Neurologist and Neurosurgeon and hope was given to me, I knew I needed to find something to keep me going. Chloe Morante CraftsAs I am still off work, I needed to occupy myself on the good days I had rather than staying in bed. One day, I rooted through my crafts and the happiness I found in those drawers was unbelievable! Since then, I have my own little work station set up, a Facebook page to show and advertise my things and I have even had messages about selling my things in a shop on a commission basis! How exciting! Crafting gives me a reason to get up and do something with my day rather than wasting away in bed because I’m not working. It helps to keep my mind going and plus, the money helps too! Crafting makes me happy and all I want out of my crafts is to make others happy when they buy and receive them. I craft to battle through my illness because it gives me something to aim for and a reason to believe in myself when everything in the world feels like it’s going wrong.

Visit Chloe’s Shop 🙂

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Testing Times

prolapse surgery test

So, I have a problem which I haven’t really spoken about. Partly because I’ve been digesting this new issue for myself. Partly because I’ve been embarrassed. But I shouldn’t be. This is a medical issue. A complication of one of my conditions, and it’s not my fault.
Last night I went for a test on this problem area. A test I was terrified of having. It was then that it struck me. I’m not the only one going through this. I’m not the only one scared about these tests. The fear of the unknown can be a terrible thing. So I’ve decided to share my most intimate of troubles and my experience last night in the hope that it eases other people’s fears.
Here goes… My name is Jennie and I have prolapses. Yup. That’s plural. I’m not going to sugar coat it. My bowel and back passage are pushing up into my vagina. My bladder is pushing down. My uterus seems to have dropped towards the front of my vagina and my back passage also prolapses out of my anus when I pass a motion. Basically my nether regions are one big old mess! Living like this isn’t fun. But explaining why is something I’ll brave another time.
Luckily I’ve been referred to an excellent doctor who is determined to fix me. Even though, due to my underlying health conditions, I’m a very complex case. The first step on the road to surgery was a test called a defacating proctogram. This can be done either with X-ray or MRI. I was to have the MRI, and let me tell you I was terrified.
My basic understanding of the test before I went was I would have something (I thought maybe barium) pumped into my back passage and then I’d have to poop it out in front of someone. My experiences of anything going up that area has always been incredibly painful. So I was nervous to say the least.
The test was in the evening at Weston Park Hospital in Sheffield. Due to the time and location I travelled alone. The hospital was easy enough to find, and parking was abundant and free. Always a good start. I arrived a little early and buzzed the bell to let them know I was there. The nurse had a quick chat with me, as they were concerned about some bleeding I’d had previously, then I had a short wait until my turn. I apologised profusely about it being my ‘time of the month’ but they assured me if it wasn’t an issue to me it wasn’t to them.
At the time of the test another lady came to collect me. By this point I must have looked like a dear in the headlights. Again she questioned me about my bleeding. She was also very reassuring about the upcoming test. In total there were three very kind and comforting women looking after me.
For the test itself you change into a gown and then empty your bladder. Any metal must be removed for the scan and it’s advisable to leave your valuables at home. Then you enter the scan room and lay on your side on the scanner.
Looking #hospitalglam in my gown.
I had two women in front of me and one behind, at the business end so to speak. The two ladies in front kept me chatting and relaxed whilst the one behind filled me up. In total she put 600ml, of what turned out to be the gel used for ultrasounds, inside my back passage. The aim is to fill you up to just around your sigmoid. Honestly, the srynges looked quite scary, but it didn’t feel too bad. The nozzles were small and they had been put in warm water to heat up the gel so it was body temperature. The sensation was definitely strange, and mildly uncomfortable. But not painful. Every now and again it would make a popping noise when air trapped in the srynges would pass into my bowel. That felt odd, but again not painful.
You then carefully roll onto your back and a cushioned plastic ring is placed under you to collect what you expel. You’re also given a headset to protect your ears. A tray thing called a coil is placed over your abdomen. This helps get better pictures.
At this point the ladies all left the room and I was popped into the scanner. My head was pretty much completely out, so I didn’t find it claustrophobic. First off they took lots of scans just with the gel inside me. Then I had to push as if I was trying to release it whilst keeping my bum clenched. This sounds a lot more tricky than it actually is. It takes a bit of thinking about, but it’s nowhere near as hard as patting your head and rubbing your tummy at the same time!
At this point the lady who filled me up returned. She told me the time had come and ran through what I needed to do again. I’d be told to release and then I just had to push the gel out. Easy right? Wrong. For me this was the most difficult part of the test. I pushed and I pushed and I pushed. I swear I pushed harder than I did in labour. My veins bulged. My muscles strained. I even saw stars! But that gel was not moving. Eventually I shifted a bit of it. But only a bit. This part of the test apparently lasts two minutes or so. But it felt like much longer.
Afterwards my lady returned to tell me what I already knew. I had failed in my task and was still full to the brim with enough jelly to cater a children’s birthday party. So after a quick clean up with the wipes provided I toddled off to the loo to evacuate the rest as best I could. Then it was back on the scanner for a final few images and that was that. Scary test over.
Honestly the fear of the test was much worse than the test itself. I have been left with some discomfort the day after. But I think that’s mainly because I really went to town trying to ‘release’. I’ve strained just about my everything. If I have any advice it would be not to push so hard that you feel like your eyes are going to burst from their sockets. Otherwise it’s really not too bad. Of all the tests I’ve had this is one of the few I wouldn’t be too upset if I had to repeat it.
I hope that if you’ve got this test coming up I’ve helped ease your fears a little, and I wish you luck with your treatment on the whole.

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Time to heal

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.

 

Black ink squid drawn from my daughters animal book.

 

My first craft.

 

Pencil sketch of a seal found on google, drawn from my phone.

 

Matisse study done in oil pastels.

 

Hope keyring found on www.consciouscrafties.com

 

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You didn’t just go there?!

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.

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My Word… 

Be kind to yourself when living with Chronic Illness

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.

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Let’s get a few things straight.. 

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.

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The demons are coming… 

Nightmare insomniac

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.

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See me 

Invisible Illness Awareness Week

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.

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Such a Scrounger! 

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.

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Ignorance is the Disability!

Raising awareness of living with an Chronic Illness

Spreading awareness for the chronically ill. This video demonstrates a few of my symptoms and situations I’ve endured, as well as other chronically ill people in their day to day fight.
Highlighting how ignorance plays such a large role in the daily lives of the chronically ill. And how chronically ill people are often treated and the aftermath and toll it takes on their lives.
Through awareness and simple acts of kindness, you can positively impact the life of a chronically ill person.

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You Feelin’ Me?

what is pots

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.

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Broken Promises 

sick of being sick

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.

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The Waiting Game. 

Waiting for doctors

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.

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You have GOT to be kidding me?! My beautiful teeth!

teeth discoloured from illness

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!!

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POTS – Let’s talk showers…

POTS shower exhaustion

Let’s Talk Showers!

POTS shower exhaustion“Wow! I feel so refreshed after that shower!” said no person with POTS, ever. Showering is not a relaxing pastime. Nor is it ever possible to have a ‘quick shower’ with POTS, so let’s forget that idea right off the bat. Showers take time, preparation and energy. Lots and lots of energy. You have to ask yourself, do I REALLY need this shower? Am I going to be in close proximity to other human beings? Will a GP or member of the opposite sex be poking around anywhere? Am I 100% sure I can no longer get away with wet wipes and dry shampoo? If the answer to any of those is NO, hold off on the shower.
Next ask yourself, do I have the energy? Do I have the time? Am I well enough? Again, if the answer to any of these is NO then leave the shower. It’s not worth the risk. Wet wipe, dry shampoo, deodorise, and pray to whichever God you prefer that you don’t smell too bad.
So the stars have aligned and everything has fallen into place, today is the day! You will be clean!!

First things first, the prep. I try and lie down for a rest before my shower, in preparation for the ordeal to come. Also I hydrate and make sure I’m in the middle of my midodrine dose, optimum time for exertion. If I’m feeling particularly with it I’ll strip off while laid on the bed. If not I end up teetering on the side of the bath, desperately trying not to lose my balance whilst removing my two pairs (minimum) of socks.
Suitably undressed it’s time to hop on in the shower!! (Because it’s just that simple, NOT) Hold on to anything and everything. Ideally a handle. But if not use the sink or a handily placed husband or partner. Whatever you do DO NOT grab onto the shower door. This will end in your naked wet body hitting the floor at speed.
You’re in!! Woop woop!! If you’re lucky you will have a shower chair. I, unfortunately, am not lucky. My shower is over the bath and there is no chair that will fit. If at all humanly possible I will stand in the shower. However, if I’ve ignored my own advice and pushed myself to shower when I shouldn’t, I often end up sat in the bath with the shower over me. This often makes me shiver uncontrollably as my legs are out in the cold air and not under the nice warm water. Fun times!
Notice I said warm. Not hot. Hot showers are things I dream of. They’re like a paradise just out of my reach. I can’t do hot showers anymore, my body punishes me with hives and syncope if I try.
Ok, so you’re finally in the shower. It’s about this point I usually need to pee. Do I really want to go through the rigmarole of getting out of this bloody shower?? I’ll let you answer that one.
Now it’s time to wash. First things first, let’s get the hair out of the way. Get your shampoo, try not to swear too much when you drop it (again), if possible use your handily placed husband to pick it up for you. Otherwise, try and have several shampoo and soap options, so if you drop one, or five, you aren’t having to bend down to get them. Wash your hair as quickly as possible as raising your arms is not only painful, but induces your symptoms. As the soap washes down your body swoosh it about in order to give everywhere else a clean. Grab your razor and go to town on those arm pits. Consider, for a millisecond, shaving other places. Then sigh and realise you’re done. Your energy ran low about the point you got undressed, and now you’re running on empty. Maybe next time?
Shaking uncontrollably grab onto the sink, your husband, anything. Keep a tight hold onto everything at this point, everything except your dignity. There’s no place for dignity with POTS. We laugh in the face of dignity! Stumble, clamour or crawl towards your bed. Preferably wrapped in a towel, but don’t fret if that’s too much effort. You’re in your own home, a bit of nakedness is fine!
Finally you made it! You’re freezing and wet, but you’re clean!! Congratulate yourself as you collapse on the bed and rest, whilst contemplating if you can cancel your plans. Because now you’ve showered your done!
What about drying yourself, you ask? I just peed in the shower and didn’t bother to shave my legs (again), do you honestly think I’m gonna dry myself when the air will take care of that for me?! Nope… Besides, the ‘just dragged through a hedge backwards’ look suits me.

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