Author: Jennie Louise Smales

Hi. I'm a 29 going on 79 year old disabled mummy. I currently have several confirmed diagnosis including Pernicious Anaemia, POTS, EDS3, Fibromyalgia and Hemiplegic Migraines. I also have lots going on that's still under investigation. Honestly, I cannot remember a time I wasn't struggling in the fight with my body, but things were only really diagnosed when I was 25. By which point I'd missed most of my last years of high school, struggled through college (with lots of time off) and made my way to Uni. Only to leave during my second year as my tutor felt I was slacking and wouldn't allow me to study part time. Since then I worked several jobs, having to leave each one as if aggravated a different aspect of my health. I eventually gave up on the idea of working about three years ago. My doctors don't ever expect me to be able to get back to it. So now, I plough what little energy I have into my family, and my blog. I've always been chatty, and I love to write. My main hope is that I manage to help spread awareness on what it's truly like to live with unseen disabilities.

Posted on 4th January 20174th January 2017 by Jennie Louise Smales — Leave a comment

A Desperate Plea…

Below is an email I sent this morning to a specialist I saw last year. It’s not professional. It’s not the right way to go about things. But it’s real. It’s my life. It’s the level of desperate I’m now at. I’m not sharing this for sympathy. I’m sharing it to highlight the thousands of people out there who are just like me, living with these problems. Sharing this isn’t easy. It’s hard not to be embarrassed and disgusted with myself. These are issues often kept behind closed doors. But I’m opening them. I refused to be ashamed. It’s not my fault I have to live like this.

If someone told you they had a prolapse, would you think it a big deal? Would you expect it to seep into every aspect of their lives? Would you realise that it could be on their mind of every second of every minute of every day? Probably not. Well… maybe this may open your eyes to what it’s really like…

Hello Dr ##1##,

I’m sorry to contact you directly, but I’m unsure what to do. I feel I have to take things into my own hands.

I have had my surgery in October with Dr ##2##. She addressed the cystocele and prolapsed uterus by performing a vaginal hysterectomy and anterior prolapse repair. No mesh.

However she refused to touch my rectocele, which continues to get worse and worse. I now cannot pass wind without pressing on my perineum, or bulge within my vagina. The only time I pass any stool is when my laxatives cause me to have violent and painful loose stool. However some of this always collects in the pockets of bowel and quickly hardens and blocks it. Mostly I have to manually remove my stool. This involves putting a thumb inside my vagina and two fingers in a v around my anus (which when I need a motion bulges out to varying degrees).

I manipulate the whole area in order to push the stool out, as my lower section of bowel doesn’t push at all. Often times I then have to insert a digit into my back passage to try and help the process along. Inside is a large cavern. It feels almost flying saucer shaped. (Sorry that’s all I could think of to describe it) I have to sweep my finger around to collect stool and mucus. Above this area it seems to become tighter again, but still won’t push, though the muscles around do clench. Since my surgery however there also seems to be a large grissly bulge protruding into that upper area.

Unless the laxatives cause me to have severe cramping I very rarely can tell if I need to pass a motion anymore. The only things that alert me are bloating, a heavy feeling, and being unable to urinate. This also happens with the large amounts of trapped wind I get. You don’t realise how much you must naturally pass throughout the day until you can’t do it anymore and it’s all stuck. Let me tell you, there’s a lot! I could power a wind farm. The only way I can tell which it is is to feel whether my bulge is full of gas or stool. Then get it out.

Every single time I go to the toilet is an ordeal. I’m left feeling in pain, bruised and without any dignity. Because of my POTS and EDS the positions I get myself in often cause my joints to hurt and sublux. My legs go completely numb and my heart fluctuates. I also get hot sweats and dizziness. All this combined means my husband often has no choice but to supervise me on the toilet and help me back to bed. I can be on there an hour or more at a time, and bed is always where I end up. It takes so much out of me. Plus, I never go just once. Often there’s at least three trips to actually get the entire stool out.

I have ended up in tears, wishing for an ostomy over this life. How crazy is that? I know it’s crazy. But I just cannot go on like this.

The only thing that Dr ##3## can think of is regular irrigation. Possibly even weekly, from now until kingdom come, to get my bowel cleared and hope that in between I feel ok. He said he doesn’t believe I have Crohns. There’s no sign of it on any recent test. But he told me, if it’s IBS it’s the strangest and most aggressive type he’s ever seen.

Please will you help me. Dr ##2## was lovely. But you are the best in colorectal surgery. I know I’m a complicated case. I followed your instructions. I saw a different doctor. I did everything you told me to. Now, months down the line, the problem I came in with is just getting worse and worse. You wrote to me saying if I was still having problems to get back in touch. Whilst writing this letter I got a call back from a Secretary. She told me my GP must write in and I have to wait all over again. I feel like I’ve been waiting forever. I feel like the main issue I need help with was pushed aside and I’m just left here to suffer. Now to hear I’m starting from scratch is devastating.

My in laws have booked to take us to Disney in early 2018. They’ve already put it back two years because of my health. They can’t move it again. How do I tell my kids I can’t go because I can’t go to the toilet like a human being and it’s ruining my life? I struggle to even wear clothes due to the extreme bloating. How do I tell them that after all the waiting and the surgery I am right to the back of the pack again?

I know I’m just another face in a sea of patients begging for your help. But I took your advice. Please, now will you try to help me? I’m not too proud to beg.

If you got to the end of this letter I appreciate it. Most doctors would bin it immediately. I really am sorry for contacting you directly. But desperate times and all that. Also, Dr ##2## really was lovely and treat me very well. She just hasn’t fixed the thing that most impacts my life.

Any advice you have would be greatly appreciated.

Regards,

Please. If you know of anyone with these problems, don’t make fun or make light. Be aware of the fact that these issues can make you feel sub human and worthless. If, like me, you are going through this. Don’t just sit back and wait in line. Dig your heels in and kick up a fuss. Push hard for the treatment you need!!

If by some miracle any Doctors happen to read this blog. Well, to you I ask this. Please try to understand that prolapse can impact a persons entire life. Many people in support groups Im in are teetering on the edge of a complete breakdown. Treat us with respect and care. But also with a sense of urgency. The longer we live like this, the less human we feel.

UPDATE: Jennie’s doctor has responded and is asking his Secretary to book her in his clinic 🙂 Watch this space….

Beautifully Written by Jennie Louise Smales from This Little Life of Mine.

Posted on 4th December 2016 by Jennie Louise Smales — Leave a comment

There is another way…

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.

Posted on 12th August 201612th August 2016 by Jennie Louise Smales — Leave a comment

Jaymee’s Battle

Our story begins when Jaymee became a mother, at the age of twenty. Soon after she was diagnosed with Postnatal Depression, a fairly common problem that many mothers face. As is so often the case, Jaymee was given antidepressants and sent on her way. But Jaymee knew deep down something wasn’t right. Months passed, and she didn’t improve. Those months turned into years and still Jaymee was no better. During this time the doctors tried many different tablets, but none of them worked. The only thing Jaymee gained from the medication was a detachment from her feelings, a numbness to life. This feeling (or lack of it) enveloped her, it became her new normal. Her coping mechanism to get through the endless days of feeling broken inside.

Around 2013 Jaymee got to the point where she lost herself completely, she had a complete mental breakdown. The medication she had been on had only delayed the inevitable. She describes herself as “high as a kite one minute, the next (she) was the lowest (she’d) ever been”. Jaymee was thrill seeking, and taking crazy risks, with no consideration for those around her. Yes, she admits she had fun at first, but there comes a point when the fun stops and all you’re left with is emptiness and regret. It’s not fun anymore when you’re constantly hurting those who love you. You’d think that being a mother would help put things into perspective, but alas it didn’t. She couldn’t see beyond her own selfish desires. Looking back it was a very dark time in her life, though at the time she didn’t realise.

Jaymee says, “This is a place I don’t want to go back to. It was awful. I hurt and blamed the ones who loved me, pushed away people who cared.”

Along the way Jaymee was unkind to herself as well as her family and friends. She had completely lost herself, to the point she wasn’t even Jaymee anymore. It felt as though her head just wouldn’t work how she needed it to. She was lost, adrift in a sea of confusion and extreme emotion. Eventually she snapped. Everything came crashing down and Jaymee could cope no longer. Desperate for help she did something “really stupid and regrettable”, and though she wishes it had never come to that, she did finally get the attention of her doctors. After years of them just telling her it’s depression, here’s a tablet; they finally took noticed and realised there may be something more going on.

Jaymee was referred to a Psychological unit. Finally she had been guided onto a path, instead of wandering aimlessly lost through life. She remembers how the first thing they considered was Bipolar Disorder, but it wasn’t that. She remembers how it took a whole year of doctors, psychologists and psychiatrists analysing her to finally get an answer. A year of being watched, evaluated, pried into. A year of waiting, stressing and wondering. It was not easy to go through, but it was worth it. Because eventually Jaymee got her diagnosis. Her label.

Jaymee has Borderline Personality Disorder. The symptoms of this are wide ranging and can easily be mistaken for other things, such as depression. But BPD is completely different, and as such will not respond well to the tablets Jaymee had previously tried. Mind describes Personality Disorders as being a type of mental health problem where your attitudes, beliefs and behaviours cause you longstanding problems in your life.

Being diagnosed didn’t make all Jaymees problems go away, but it did help her to understand herself a lot better, to start being kinder to herself. Her diagnosis meant she was able to explain to the people she loved why she behaves in the way she does. It helped her learn to accept herself again, and take some control back. She was finally put on medication that had been properly tailored to her needs. Medication that actually helped. But even more importantly she was given a team of people to support her, and guide her through learning to live with her new label. She had counselling and went on courses to help her manage her emotions.

The journey was just starting, and it was to be a long and difficult one. Getting a diagnosis, a label on your back, does not automatically make things easy. There were many bumps in the road, and Jaymee almost gave up on herself so many times. But she didn’t, she caught hard and she’s still here today, stronger than ever before.

Last year Jaymees life took another turn, tragedy struck and she lost her Father. The man she had worshipped and adored all her life. Such a cataclysmic event is enough for anyone to fall off their path in life, let alone someone with mental illness. But instead Jaymee did the opposite, she grasped her life in both hands and took back control entirely. Starting by coming off her medication. Now, Jaymee admits this was probably a rash decision, and it’s certainly not something she would recommend to others, but she knew it was something she needed to do. Jaymee needed to grieve for her father, to work through her pain and her loss, she knew this wouldn’t be possible for her on medication designed to dampen down extremes of emotion. Her doctors disapproved, but in the end it was her choice, not theirs. But she didn’t turn her back on all the things she had learned since her diagnosis. Jaymee took those skills and used them to get through life, facing one day at a time.

A year on and Jaymee hasn’t touched her medication again, and she’s feeling better than she has done in a long time. Finally she feels as though she’s found a part of herself again. Things are not easy, she still struggles from time to time, a diagnosis of BPD doesn’t just go away if you choose to stop taking your medication. But Jaymee is learning to live with it, with pride and a new sense of self worth. This has been one of the hardest battles she is ever likely to face, and she’s done it! Eight years, eight years was how long it took to get a diagnosis. Jaymee will never get those years of her life back, those years that should have been spent enjoying motherhood but instead were full of battles. Battles with herself, doctors, and those she loved. She knew in her heart all those years ago that Postnatal Depression didn’t fit with the way she was feeling. Jaymee knew the doctors weren’t doing all they could for her, and she often wonders how her life would have turned out if she had just shouted a little louder, pushed a little harder.

If you are struggling with mental or emotional problems Jaymee has this message. “Please , please, don’t suffer in silence, seek help if you need it and keep going until you’re listened to. Mental Illness is not a weakness, from mine I found my strength”

Jaymee bravely decided to share her story on Facebook recently. Had she not many of her friends, myself included, would never have known of the struggles she’s faced. Mental Illness is perhaps one of the truest forms of invisible illness their is. So easily hidden, and so often seen as taboo, people can be left helplessly floundering, battling their demons alone, for years on end. Jaymee says that if even one person can be helped by reading her story, then it was worth it to share. To Jaymee, I say thank you. Thank you for letting us in, and for trying to help those in need. I too hope your story helps others, I believe it will.

If you are struggling with Mental Illness advice can be found at Mind.org. This post was adapted from Jaymee’s original Facebook post.

Beautifully Written by Jennie Louise Smales from This Little Life of Mine.

Posted on 3rd August 20163rd August 2016 by Jennie Louise Smales — Leave a comment

Jennifer, Monty and their story

Throughout the world there are thousands upon thousands of people living below the radar. Struggling just to exist, let alone be ‘functioning’ members of the community. These people, people like me, live with disability. Together we form a huge portion of the global community, but with so few of us in the public eye it’s hard to get our stories out there. So that’s what I’m hoping to do. I’d love to give you a window into our lives, a hearty welcome and a good look around!

Jennifer Quinn Spina Bifida disability — Jennifer looking snazzy in her sunnies.

Jennifer is a forty two year old lady who has suffered with Spina Bifida since birth. Basically her spine did not form properly, causing her to live with a host of health problems throughout her life. These include not only crippling pain and loss of sensation, but also mobility issues. For a long time Jennifer fought hard to get around on crutches, until eventually her body could not manage anymore. She is now permanently wheelchair bound.

Spina Bifida Carer — You don’t need a cape to be a super hero.

As Jennifer doesn’t have the upper body strength to propel herself, she relies on others to get her about. Luckily she has a wonderful husband who loves her dearly. He happily devotes himself to caring for her, cooking her meals and taking her anywhere she needs. It takes a special bond to love through severe disability, and they have it. As I’m sure you can imagine, living in constant pain and exhaustion is not easy. For Jennifer, as with many of us struggling with disabilities, depression has dogged her life. Trying its best to creep it’s way into her psyche on even the brightest of days. But she does not let it win!

Spina Bifida Jennifer Quinn Story — The lovely Monty, smiling with Mum

Jennifer has filled her life with so much love its overflowing. How? With her beautiful pooches and pussy cats, who brighten her days with their bouncy personalities and unwavering adoration. One such companion was Monty. A cheerful West Highland Terrier, he was Jennifer’s constant companion of seventeen years. After seeing her through both good times and bad, he said his goodbyes and grew his Angel wings in August of 2015. That loss was one of the toughest to go through, and coming to terms with it has been hard.

You’d think that with so much difficulty in her life Jennifer would be bitter? But you couldn’t be further from the truth. As soon as you speak to her you feel an eternal optimism exuding from her. This strong woman will not let anything bring her down for long. So much so, that rather than wallow in grief, she has turned the harrowing loss of her beloved pet into something positive. Jennifer has chosen to craft. She crafts through pain. She crafts through depression. She crafts through the melancholy of day after day of living with disability. In fact, she’s made so much that she’s even opened her own shop, Monty’s Makes.

Spina Bifida Selling handmade crafts Montys Makes — A handful of items to be found in Jennifer’s shop

Jennifer sells a whole range of beautiful bespoke crafts. Each item can take her days, if not weeks to complete. She does all her crafts sitting down, but due to pain in her back she has to do several short sessions on and one piece. To keep things interesting Jennifer likes to hop from piece to piece. When asked about her crafting she says:

It might take a while to get things done, but I never give up. I enjoy it as it helps me to take things not so seriously.

When visiting Jennifer’s shop you are immediately hit by the sheer volume of beautiful work she has created. From the kitch hand sewn items, to the funky jewellery. There’s something for everyone, not forgetting of course a good dose of doggy themed makes. How could she not. Here’s a few of my favourite pieces:

Charity Blue chipped bangle bracelet — Blue chipped bracelet

I love the jade green and aquamarine hues of this beautiful bracelet. Being a bangle its so easy to pop on, perfect for someone who struggles with fine motor skills like me! Each loop of the bangle has had two of the shimmering beads attached by hand, creating a truly decadent and stunning piece of jewellery. My jaw literally hit the floor when I saw the minuscule price tag. It’s definitely one for my Christmas list!

Felt Birds Decorations for Charity — 2 Felt Bird Decorations

A sucker for anything kitch I adore these little felt birds. I can imagine them adorning the nursery of a well loved newborn. Or dancing merrily on a cot mobile to help soothe baby to sleep. Alternatively they’d be great looped through the Zips on handbags as a quirky adornment, looking cool and making the zip easier to grab at the same time. Another feature I love is that Jennifer allows her customers to customise these and many other items, offering a variety of colour choices.

Book or Tablet cushion holder – purple floral pattern — Book or tablet cushion

Finally I have to say that I ADORE this iPad holder. With the issues I have in my wrists I really struggle to hold my iPad. This is not great as I spend the majority of many days in bed, with only my iPad for company. Sometimes the pain is too bad to even hold it. My husband did buy me a small plastic stand, but due to resting it on myself, I often end up with my iPad smacking me in the face. No fun. This is absolutely perfect!! It’s sturdy and pretty and everything I could want in an iPad stand! Even better I have no doubt it could be used for mirrors and even books. I’m really feeling all the love for this item!!

Just when I really thought my admiration for the drive and determination shown by Jennifer could go no further, she surprises me once more. Because Jennifer takes no profit whatsoever from Monty’s Makes. You see in 2002, after a harrowing four year battle with lung cancer Jennifer lost her Father. Then last New Years Eve more sorrow befell her family when her sister in law sadly passed from Breast Cancer. Even with all her own hurdles Jennifer couldn’t sit back and do nothing. So that was why she decided to create her shop and donate all profits to Cancer research. And what does Jennifer have to say about her wonderful gesture?

I just wanted to help others, like I’ve been helped all my life.

If you too want to help others please take a look through Monty’s Makes and see if anything catches your eye. Otherwise feel free to make a donation at Cancer Research UK. Jennifer would really appreciate it.

**Beautifully Written by Jennie Louise Smales from This Little Life of Mine. Please note this is NOT a sponsored post. No money or goods were exchanged for the writing of this post.**

Posted on 1st May 20161st May 2016 by Jennie Louise Smales — Leave a comment

The Search For Diagnosis Continues

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.

Posted on 13th April 201613th April 2016 by Jennie Louise Smales — Leave a comment

The words I dare not speak

*** I don’t know how this post is going to go. But I would say reader discretion is advised. ***
As many of you know I’m struggling with the symptoms of a prolapse. In fact, when I saw my surgeons for the results of my Proctogram their exact words were that ‘everything is coming down’. I do hope to share my story at various stages, and was intending to share my experience of that appointment. This is not that post.
But that appointment does play a part. You see it culminated in the surgeon I’d never met before telling me I would be fitted with a pessary. I told him I didn’t want this. I’d been told I’d need surgery. I stuck up for myself. But no. He thought a pessary was the way forward, and that’s what was to be done.
Ordinarily in this situation I’d feel disgruntled to say the least. Royally pi**ed off would be a more accurate description of my feelings when doctors steamroll me into things. This time I didn’t. This time was different. This time I was devastated. Completely and utterly devastated. I felt something inside me well up. Something I hadn’t felt for many many years. Something which I wasn’t ready for.
I told myself it was disappointment. I’d been hoping for a surgical fix. But yet again I had landed myself with a condition to be ‘managed’ rather than cured. Something that would need long term treatment rather than an end date, a fix. I lamented this fact to my husband. He was sympathetic, but also confused. This was a none surgical option, surely that was better? He had a point. So I saw my GP. I asked questions. I looked at diagrams. I researched.
The results were good. The pessary was less invasive. No recovery time. I may be able to cope with it for a long time and only need smaller surgery. The side effects were minimal. If it didn’t suit then surgery was still an option. I even spoke to women with a pessary. The feedback I received was overwhelmingly positive. I feel I need to point out that for many women the pessary would be a wonderful option.
But not for me.
For a while there I put it to the back of my mind. Then my letter arrived. My letter with the info on the pessary. My letter stating I would have my appointment for a pessary fitting ‘in due course’. I read that letter and I sobbed. I cried long forgotten tears. Once I started I just couldn’t stop. I think I sobbed all night that night. Quietly in bed. My back to my sleeping husband and wonderful baby. I broke my heart time and time again.
Eventually, in the dark, I picked up my phone and emailed my ‘nice’ surgeons Secratary. I wrote the words I wasn’t ready to speak. I wrote the words that I didn’t even realise had been the problem. I spoke of a tragedy I thought I’d long since got over. I wrote and I hoped. I hoped for understanding. I hoped for compassion. I hoped for a new option.
Soon after I saw my GP for an unrelated issue. He innocently enquired if I’d had my prolapse appointment yet. I think he was surprised when I broke down into a puddle of tears in his office. He almost cried himself when the words came tumbling out.
FOURTEEN. VIRGIN. RAPE. VIOLATED.
It was at that point I knew 100% I could not have the pessary. I could not, and would not, force myself to go through all those emotions again. After so many years of counselling, healing, regression and then finally progress, I wasn’t going to step back into the dark. My demons have been long locked away. I thought I’d got rid of them altogether. Clearly not. Clearly they still exhist in the darkest depths of me. But that is where I intend them to stay.
I feel weak. I felt pathetic. I felt downright stupid for allowing something from so long ago to affect my health today. But my GP didn’t. He understood. He understood that childhood trauma becomes engrained in your soul.
I was a child. Until that day in my GP office I’d never seen it like that. At fourteen I’d felt like a grown up. I was independent. Strong. Fearless. But now, fifteen years later, I finally see I was a child. That was a hard pill to swallow.
So that’s where I am now. My GP has written to my surgeon stating he feels the pessary is not an option for me. My truth is out there, and now I’ve scared it with you.
Don’t get me wrong, it’s still hard. I’m still struggling. I’ve dredged up a part of my past I never wanted to face again. But I’m glad I spoke those words. Because had I not I know I’d of ended up being railroaded into something that just wasn’t right. Not for me. And now I have a doctor to vouch for that.
So ladies, and gents, if you have a past experience that still impacts you today. Something you dare not speak of. Something which affects the way you may view medical examinations or treatment. I implore you, find someone you trust and let them know. Because they can and will help.

Posted on 28th March 201628th March 2016 by Jennie Louise Smales — Leave a comment

You know who your REAL friends are

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.

Posted on 25th February 201626th February 2016 by Jennie Louise Smales — Leave a comment

Testing Times

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.

Posted on 23rd February 201627th February 2016 by Jennie Louise Smales — Leave a comment

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.

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

Hope keyring found on www.consciouscrafties.com

Posted on 21st January 20162nd May 2018 by Jennie Louise Smales — 5 Comments

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.

Posted on 14th January 201620th January 2016 by Jennie Louise Smales — Leave a comment

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.

Posted on 21st November 201522nd November 2015 by Jennie Louise Smales — 2 Comments

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.

Posted on 13th October 201513th October 2015 by Jennie Louise Smales — Leave a comment

The demons are coming…

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.

Posted on 3rd October 20153rd October 2015 by Jennie Louise Smales — Leave a comment

See me

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.

Posted on 29th September 201529th September 2015 by Jennie Louise Smales — 9 Comments

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.

Posted on 15th September 201515th September 2015 by Jennie Louise Smales — Leave a comment

You Feelin’ Me?

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.

Posted on 15th September 201516th September 2015 by Jennie Louise Smales — Leave a comment

Broken Promises

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.

Posted on 8th September 201510th September 2015 by Jennie Louise Smales — Leave a comment

The Waiting Game.

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.

Posted on 1st September 20152nd September 2015 by Jennie Louise Smales — Leave a comment

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

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!!

Posted on 31st August 201522nd September 2018 by Jennie Louise Smales — 1 Comment

POTS – Let’s talk showers…

Let’s Talk Showers!

“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.