Waiting List Lifers.. 

Waiting List Lifers.. 

When my surgeon agreed to do my ileostomy he asked me if I would do him a favour. He is running a study of people on waiting list for surgery and hoped I’d partake. Of course, I said yes. In my opinion, the more doctors know about life as a patient the better. So, in that vein, I’d like to share with you my experience of waiting for my surgery date… 

It’s been about a month now, since my surgery was agreed. Over two weeks since my pre op. Still I have no date. Things may have gone a little faster, but my extensive and complex list of health issues threw a spanner in the works. As always. 

In order to be scheduled for surgery and receive a date you need to have the go ahead. ‘Fit to proceed.’ Whilst my tests at the pre op all came back ok (despite being told I’d had an acute kidney injury I wasn’t aware of recently) I couldn’t be pronounced fit without more information from my POTS team. Recently they’ve put me on medication for MCAD and the nurse who oversees pre op was, rightly, concerned this may affect my care needs whilst in surgery. My progress along the conveyor belt was halted until an email came back outlining the correct protocol to follow for me. 

Whilst I appreciate the fact that the hospital is doing their best to ensure a good outcome for me, the wait was maddening. Every day I was calling around, leaving messages on voicemail after voicemail. Until eventually I heard back from the lovely lady coordinating my pre op assessment to say that she had given the green light!! Fantastic! I was elated! Finally things could get going!! 

OR NOT… 

My surgeon was away most of May and will continue to be away in June. Meaning that, if I want to be sliced and diced before July I need to put my faith in another surgeon. A surgeon I haven’t even met. This is something I was dead against. I like my surgeon, I TRUST my surgeon. He is the best my hospital has to offer. I always said I would just wait to be seen by him. 

But this waiting is driving me mad! Each day I hope and pray that the post will fetch me a hospital letter with my admission date, or the phone will ring with a cancellation I can slot into. Meanwhile, my condition is worsening. The prolapses continue to get larger and larger, making it harder to pass anything. Anything at all. My insides hurt. They ache and they stab, twist and pull. My stomach swells and my kidney area feels about ready to explode. On top of all that sits the stomach cramps and absolutely crippling back pain. 

I’m trying to continue normal life. To still get out and about. But by the end of the day I’m yelping in pain like a wounded pup. Any movement takes such an effort that it’s leaving me on the constant verge of tears. I feel angry and disgusted with my body and what it’s doing to me. I’m afraid that my bladder will retain too much and give out unexpectedly. I sleep (for the little I can get) on a towel as I’m afraid of accidents. I’m afraid that soon my back will be so painful I won’t be able to attend to my complicated bathroom needs. I’m afraid that my kidneys are becoming damaged from the waste I cannot clear out of my bladder. I’m afraid that things are worsening to the point that surgery will have to be more extensive than we hope. 

On top of all the health fears, I have the fear of letting my children down. Letting my husband down. Being seen by him as a vile and grotesque creature. All these fears, the pain and exhaustion, they are all bubbling up inside me twenty four seven. Each day I’m left waiting feels like a lifetime as my mood plummets to depths I dare not think about. I am constantly walking a tightrope, a thin sliver of hope preventing me from falling apart at any moment. Tears and anguish are never far away at the moment. 

So, whilst I am truly desperate for MY surgeon to do the operation, I told the waiting list coordinator I would accept treatment from another surgeon. In fact, my exact words were ‘I’d let anyone do it. As long as they have a scalpel and a will to do it, I’m in!’ 

That’s actually how I feel now. The desperation to get it done outweighs the need for my doctor to look after me. But, even with my flexibility, it’s not that simple. A surgeon cannot simply be assigned a case and told where to cut. Surgery doesn’t work like that. Each different surgeon has to agree to the merits of the case. They need to read the file and understand why the patient was offered that road of treatment. With my health problems being so rare, that’s not guaranteed for me. I worry my notes could be passed round, with each doctor refusing to do the surgery. In the meantime my surgery date with the doctor I want is getting further and further away. 

So I wait. I wait and I worry. I wait and I cry. I wait and I grit my teeth and attempt to cope with the pain. 

Such is life on the waiting list. 

The Surgeons Decision. 

The Surgeons Decision. 

If you follow my blog you may remember the impassioned email I wrote my surgeon. I was honest and brutal about the difficulties I’m facing thanks to my prolapses; basically I begged him for help. He responded. Soon after I was sat in his office and given three options to choose from, repair, permanent irrigation tube or, stoma. After a lot of research and soul searching, consultations with my GP and POTS nurse, I decided the stoma was the right decision for me. 

A few weeks ago I saw my surgeon again. I told him how my issues had worsened. Seemed to be worsening each day. He began to suggest re doing tests I’d had months earlier. A year or more earlier in fact. I took a deep breath and stopped him in his tracks. 

No more tests. No more thinking. No more suffering. I told him I had made my choice and was ready for surgery. My voice shook as I spoke of the research I had done and my reasons for choosing this route. I spoke of the impact on my life each surgery could have and how my previous ‘fix’ of one of the prolapses has already failed. Failed to the point of being worse than it was. I made it very clear that I knew the pitfalls as well as the positives of having a stoma. This is in no way the ‘easy’ option. There was no easy option to choose. All were fraught with complications and changes to my life. It is just that this path gives me more chance of change. Of no longer suffering with pain in my stomach and back all the time. Of not living my life around my bowel. 

Eventually I stopped talking. I sat there, shaking, awaiting his response. ‘Right, we will get you on the list for surgery then.’ 

HE SAID YES!!

He agreed. Immediately. No more appointments. No more tests. I would be put on the waiting list for surgery! Not only that, but he decided to do an ileostomy rather than a colostomy. This will bypass all of my large bowel, hopefully bypassing all my problems with it! He’s going to do a keyhole loop procedure for now, if that still leaves me with pain from the prolapses then he will consider a larger procedure at a later date. I can understand that decision, after all I do have a bajillion things wrong with me. Why have a huge procedure when a relatively small one could do the job? A procedure that only takes forty five minutes will hopefully change my life completely. 

He left the room to get the required paperwork and I dissolved into a puddle of tears. My friend comforted me as I sobbed. My tears weren’t sadness; they were relief, joy, fear and excitement all mingled into one cocophany of emotion. As each breath rattled through my lungs I felt a weight lifting from my shoulders. Soon, within eighteen weeks, it would all be over. I’d be through the surgery and on the road to recovery. I could hopefully start living again. 

But at the same time, I knew it would all just be starting. My recovery. Adapting to a new way of functioning. Living with a bag and evolving my life around that. It was a truly terrifying and liberating thought. 

The surgeon returned and was perplexed at my tears. ‘I thought you’d be happy?!’ ‘I am!’ I exclaimed, explaining the explosion of emotions overwhelming me. As I left I hugged him and thanked him for saving my life. Because whilst the problems with my bowel aren’t at the point of killing me, they are stopping me living. Hopefully, with this change, I’ll be able to take part in my own life again. 

NB. During the appointment my surgeon spoke of how refreshing it was to have a patient be so open and frank about their condition. He really appreciated my in depth emails. Whilst it is not always possible to write to a doctor directly, we can advocate for ourselves during our appointments. As a patient, I urge you to research your condition and your options. Take notes to appointments if needed so you can speak clearly about your problems and the way you want treatment to go. NOBODY knows more about your body and your life than you, you are the expert in that field, so be confident in yourself. If you’re not happy with treatment plans, request another opinion. This is your body, it is you that has to live with the treatment being offered. You cannot simply end a shift and walk away from things, so advocate for yourself. Always. 

N:Rem Sleep System.. Is it worth it? 

N:Rem Sleep System.. Is it worth it? 

In case you didn’t read my previous blog I’ll give you a little info on the N:Rem Sleep System and why I chose to review it. If you follow my blog, you’ll be aware that I have chosen to trial several products that I feel will be of use to us as in the disabled community. Products that offer to improve our health, or quality of life in some way. It is for that reason that I contacted the N:Rem company. 

The company claims that this sleep system is specifically designed for people who suffer pain. The mattress is integrated with foam tablets of three different densities. These tablets can be swapped around the five different zones in order to effectively create a mattress that is bespoke to your needs. Unfortunately, I was unable to try the mattress as a whole, but I have been trialling the foam tablets on my own sub par mattress at home, here’s my findings… 


It was about two months ago that the tablets arrived in my home. My husband lugged the two huge boxes upstairs and I was shocked by the depth of the foam pieces. Often mattress toppers look thick and luxurious on photographs, but what arrives is a disappointing pancake of patheticness. That certainly wasn’t the case here. The foam was thick and sturdy, you could easily feel the different densities just by giving them a squeeze. 

Alongside the tablets came a comprehensive leaflet with instructions on the best placement of them, to suit pain in various areas of your body. I get all over body pain, but I do find the worst of it centres around the base of my spine. So I planned out the mattress to suit that. (I planned, my husband placed. Not that the tablets are heavy; just a little cumbersome as we have a kingsized bed.) I have to say I was very impressed that the foam easily covered the whole mattress; many places say things are kingsized but they never quite fit. I suppose that comes with the fact these are designed to actually slot into a mattress, rather than sit on top, so they need to be snug. Each density of tablet is a different colour, making them very easy to identify. 


Initially, I was incredibly impressed with the mattress toppers. For the first time in a long time, I found laying in my bed comfortable. The main improvement was to the pain in the pressure points where my body weight hits the mattress. Usually after a nights sleep these areas are pushed and smushed into awkward positions of pain. But not with the N:Rem tablets. With these tablets I could wake up in a much more comfortable state. Making it much easier to get a start on my day. 

I also found that the sleep I did get was deeper. Much deeper. To the point I often wouldn’t move in my sleep. There have often been many nights where I would toss and turn throughout the night, waking even more exhausted than when I went to sleep. Not so anymore. It is only on the highest pain nights that I struggle to get comfortable, rather than almost every single evening. In fact, for the first time in my adult life I managed to sleep the whole night on my side. Even better, my arm wasn’t completely numb and useless when I woke up. The different zones of the mattress tablets allowed my body to sink down where needed, and have extra support in other areas. This lead to the perfect sleeping position. Sleeping on my side is something the doctor has recommended for a while, to aid my digestion, so I’m glad it’s finally an option for me. 

Top tip: If you’re going to invest in a mattress, be sure to also get the correct pillow for your needs. Pillows come in all shapes, sizes and densities and can really make a huge difference to your sleep posture. 

Unfortunately during this trial I’ve had some severe dips in my health, leaving me pretty much bed bound for long stretches of time. It was during these periods in bed that my back pain became incredibly severe. It seemed like the tablets weren’t working. 

Disappointed, I rearranged them. Then rearranged them again. Then did it a third time. Eventually, after trying out pretty much every combination mathematically possible, I gave up. Perhaps my body is just too cantankerous to help? I was dreading writing the review, not sure what I would put. But then something changed, I moved to my husbands side of the bed in order to watch some television one night. The next morning my back pain had lessened. Was it a fluke, or had switching sides really made that much of a difference? I decided I best steal his side on a more permanent basis in order to find out.. for the sake of my readers. 

It was soon clear to me that the problem wasn’t the tablets. Over on my husbands side my backpain eased and the quality of my sleep continued to improve. I do still have insomnia, but when I do drop off it is a deep and refreshing sleep. I’ve also found myself able to nap during the day as soon as I become tired; rather than tripping the light fandango for at least an hour trying to find that sweet spot before eventually giving up. When I discussed this with my husband, he wasn’t surprised. Apparently on my side of the bed there is a me sized dip in the mattress, becoming particularly deep around backside level. 

So that’s the answer, my sub par mattress was making it impossible for the tablets to do their job. 

This is exactly why N:Rem do not provide the foam tablets as a pack on their own. They used to, but realised the customers weren’t getting the improvements they needed. So now the tablets are provided alongside the 2000 pocket sprung mattress, which they slot into. They are then topped with a viscoool layer and finally zipped into a high quality cover. The cover itself can be zipped off and washed, something that really appeals to me as I know life with chronic illness can be somewhat messy. As can life with kids. The whole mattress can also be stripped back for cleaning and airing out, great for those of us with allergies. 


I do wish I had been able to try the mattress as a whole. I’d love to know just how cool the cooling layer is, and if that helps with my sleep. My health issues mean I get severe hot sweats at night, so much so I have to have a fan running all year. The pocket sprung mattress sounds pretty amazing on its own, with the whole set up it must be mind blowing! Also, having just the foam tablets on my bed can be somewhat tiresome at times. My mattress is not designed to hold them in place like the N:Rem is, often they move and spread apart. Plus, I can feel where each one meets the next due to only having a fitted sheet on top; a fitted sheet that barely makes it around my mattress due to the depth of the foam. However, even with all these little niggles I would not be without these tablets now. I can 100% say that they have improved my sleep, lessened my pain and increased my quality of life. 

The N:Rem Sleep System is definitely the top of my wish list! Particularly as there’s a FREE 100 night trial going on at the moment, during which you can test out different combinations of foam tablets to ensure you get the best for your needs. The mattress is guaranteed for TEN years with a free returns policy on it. Finally, there’s an interest free offer that works out at only £1 per night for the sleep system. (I’d probably save that in electric for the fan!) You don’t even need to pay a deposit! I definitely feel a good nights sleep is worth £1 of anyone’s money, don’t you?

To start your FREE 100 night trial click here or to order today click here. Type in THISLITTLELIFE at the checkout for a £30 discount! 

This blog post is part of a sponsored review of the N:rem sleep system. All opinions within it are my own and in no way influenced by the company. This trial is not available to the general public. It is a one off that has been organised in order to create independent feedback on the product via my blog. There may be financial reward should any profits be made as a direct result of this piece. 

The Truth Behind the Smile. 

The Truth Behind the Smile. 

I’m forever telling people, don’t judge a book by its cover because so so many disabilities are invisible. This isn’t just something I preach on my blog. It’s a mantra I live by. I often find myself vehmenantly describing how difficult things can be for people who appear perfectly fine. I’m almost as often shot down by people who will never understand and choose to believe we are all Such Scroungers but that is not the case. 

In this blog I hope to prove to you that you really cannot tell by looking at a person whether they are well or not. I hope to show you how these things can be well hidden, with the aid of this photo… 


Just looks like and other mum with her kids doesn’t it? Care free and having fun on a trip to the cinema. No sign of anything untoward. 

But that’s not true, here’s the story behind the photo… 

My health recently has been on a serious downward spiral. My days are filled with exhaustion and extreme pain. Pain I wouldn’t wish on my worst enemy… well, in theory. Pain I definitely wouldn’t wish on most people anyway. My WORST enemy could possibly have a wee taste; but only because their treatment of me likely set the ball rolling to the crippled shell of a woman I am now. But I digress.. The pain is severe, severe enough to leave me biting back the tears most days. That and the exhaustion combines to pummel the wind from my sails every single day; to the point I can only stand to be up and about around four hours on your average day. To the point when the babies bedtime is also mine. To the point where my hands have been too sore to blog all the thoughts I have swimming around my tiny mind, making me feel my head will surely explode. To the point that even though I’m home all day every day, I’m missing my children. Missing them to the point my heart actually aches.. though to be fair that could just be one of my list of ever growing symptoms. 

So, with it being the school holidays, I planned a rare treat. Taking my two eldest to the cinema. Something I only get to do on the rarest of occasions. Even more special, I took them by myself. 

The outing was planned with military precision. I chose a film that was as early as I could manage, but hopefully not running too late. Tickets were booked online in the hope of avoiding a queue at the cinema, my nemesis. (Standing in line has often caused me to pass out cold thanks to a pesky little condition known as POTS.) We chose the VIP seats. Less stairs to contend with. More chance I could be at least a little comfortable. 

Before going I spent literally the entire day resting. Only climbing out of bed to have a shower with my husband. I sat as he washed my hair and body, resting my head against his bare stomach I sobbed quietly as I worried I wouldn’t be able to do it. I’d have to drag the kids home midway out of the film or perhaps wouldn’t even make it there. I sobbed because of the days of extra pain and exhaustion I knew I’d suffer just from going out on such a simple outing with my children. The unfairness and the fear mingled inside me as the salty tears washed down my face and mingled with the flow of the shower. Then I sloped back to bed and laid there as my body slowly dried. Too wrung out to dry it myself. 

Finally the time to leave arrived. I scraped myself from my bed and slung on the clothes I’d chosen. A soft and stretchy jumper dress with a pair of black leggings. Comfortable, expandable, perfect for a body that can go up four dress sizes in ten minutes when my stomach expands, which it does. Daily. You might have noticed my face is makeup free. Not because I don’t like makeup, but because makeup doesn’t like me. I have to think very carefully before wearing makeup as it not only reacts with my skin and causes swollen itchy eyes, it also flares my pain. I was already in all the pain I could handle, makeup was a no. As for my hair, I left it how it dried. Then stealed myself for the task ahead… 

I didn’t tell the kids until we arrived what we were doing. Partly to make it a fun surprise. Mostly in case I had to turn back round and head home. I didn’t want to see them try and hide their disappointment from me, so I told them we were running an errand for their dad. (In hindsight that may have been a mistake as the last time we did that we went to collect him a new car; so running an errand actually got the kids pretty excited.) When the realisation dawned on them the excitement on their face made it all worth while. I knew my efforts and all the pain it would cause was completely worth it. I hope that it is these special memories that will stick with my kids, not the countless days of seeing me worn down and in pain. 

Fast forward to the photo. Seated in the theatre and awaiting the start of the credits. We had come in really early to ensure I was seated and comfortable rather than stood in the foyer. I took some pictures with the kids for a bit of fun and to fill the time. Also, my memory is so hazy these days, pictures help me keep them in focus. 

What memories does this picture conjur? A fun trip to the cinema with my kids. But what do I actually see when I look at the image? I see myself, desperately trying to hold it together for my kids. Painting on a smile and fun to hide the difficulties I go through. I see a disabled woman doing her best to have a few hours of being just like everyone else. Is that what you saw when you looked at it? I doubt it. 

Just as you cannot look at me and see all the problems I have hidden within me, you also cannot look at anyone else. So before you start whispering about Joe Bloggs down the street, just remember; the real story may be very different to the snap shots you see. 

I see you. 

I see you. 

I see you. I see you as your ‘glance’ lingers over me just that little bit too long. I see you look and I see you judge. Not that you’d know. As I walk my eyes flit between the pavement and anything close by I can take hold of. As I sit I stare down at my lap. Avoiding eye contact. Avoiding conversation. The once bubbly character hidden deep down inside. Below pain. Below exhaustion. Below stammers and stutters and a noticeable tremor. 


I know what you think. As I sit here, wilting, in the doctors surgery. The weight of my thick coat weighing down at my shoulders. A woolly cap of my daughters hastily thrown on to hide the greasy mess that is my hair. Sticking up in all directions after a night of hot sweats and tossing and turning. My face crusty and falling apart. My lips splitting and bleeding. I see the assumptions in your eyes. At best I’m seen as lazy, unclean. At worst an alcoholic. Maybe a drug user. 


It doesn’t matter that I’m in a doctors waiting room. My pallid skin, the bags under my eyes, it tells them all they need to know. You may think I’m being over sensitive. Assuming the worst of people. But years of illness teaches you the difference between inquisitive, friendly and downright accusatory. When you have health problems that mean you can, and do, have to ask help if strangers; it’s a skill one has to master. 

I’ve had people yell abuse as I desperately stumbled towards home with my daughters hand in mine. Screaming that it’s ‘disgusting to be drunk at this hour’ with a child no less! Outside her school, parents who had previously chatted to me in the pick up line stepped over me without a second glance the day my symptoms got the better of me and I ended up gracing the pavement. Once again my daughters hand in mine. At four years old she eloquently stood up for me when I stood grasping like a landed fish as a rotund gentleman called me out on using a disabled bay. ‘My Mummy has a poorly heart, she’s allowed to park here!’ He looked suitably ashamed. 

I admit it. My family is my shield. Looking into the loving eyes of my children and the steady gaze of my husband saves me from looking at the prying eyes of strangers. But today, alone in the doctors waiting room, my shield isn’t here. My rescue comes only when the doctor calls my name. I wince as I try to get up too fast and escape what feels like a barrage of ever lengthening glances. 

Fast forward through the usual soul destroying back and forth with my doctor and I’m outside, desperately trying to get to my car. The doctors has no carpark so I’m forced to cling to a wall as I move in my half shuffle half stumble towards my goal. Somewhere behind me I register a friendly voice. “Are you ok?” he asks. His eyes are different. Unclouded by suspicion, he’s just friendly and concerned. I tell him I’m fine, whilst clinging to the wall as though my life depends on it. He thought I’d had a funny turn. “Oh, so this is just your normal?” Yes, unfortunately it is. With that the kind gentleman leaves me to my quest; walking off slower than he needed to, perhaps in case I changed my mind. My faith in humanity somewhat restored, I continue on  my epic quest. 

The truly unfortunate thing about this story though, it’s not my health. It’s not my struggles. It’s the fact that the friendly encounter I had today is not my normal. It’s not even close. My normal is the opposite. It saddens me how surprised I was when I was offered a helping hand. If I could have one wish it would be that people offered me that first, rather than their judgement. 

I need this. 

I need this. 

I want to work. I NEED to work. Here I am, writing blog posts, working on Facebook pages. All of it, it all boils down to the fact that inside me I have a need to work. 

Financially, we are ok. Things aren’t super amazing; but we’re ok. That’s not why I need to work. I need to do it because there’s something inside me, pulling at me, clawing at me. Begging me to do something, anything! I spend so much of my days in bed. Blood pressure too low, or pain too high, to get up and function. My husband looks after the kids. I’m here feeling like nothing. Less than nothing. I’m here feeling like a burden. 

My disability is what tethers us. What captures us in this financial bind. Mountains of paperwork arrive through the letter box. Questionnaires, forms, payment plans and deductions. A few weeks ago a woman came to our house. She sat in our living room and fired question after question at me and my husband. Prying, peering, into every nook and cranny of our lives. After all, our money comes from benefits, who are we to think we have a right to privacy?! It was agonising. It was degrading. Bad for me, who’s become numb to it over the years. Worse for my husband, who left a high paying job to look after decrepit old me. I don’t want that for him. 

Of course, I can’t work a normal job. Just getting ready for work would be me done for the day. But surely there must be something  I could do?!

Once upon a time I worked in travel. My earnings rocketed as my commission far outweighed that of my colleagues. Customers would queue out of the door just to be seated with the girl who went the extra mile. The girl who cared about their holiday. The girl who believed booking is where the holiday magic starts. I was that girl. There was barely a week went by when I wasn’t in the top ten for sales in the region, or even the country. But none of that mattered. 

I had a boss who belevied seventeen shifts in a row was no problem, especially if you had plenty of days off in the weeks that followed. My body disagreed. My body gave up on me. My body caused time off, sick pay. Disciplinaries. My body caused me to leave that job. Another in a long list of broken dreams. 

But surely if I could do that then, I can do something now?! But why this sudden need? Why now? What’s changed? 

Honestly? Nothing has changed. Nothing, and everything. I’ve always had this need inside me. When I first became ill I tried time after time to find something that would work. Time after time I failed, so I buried this feeling deeper and deeper inside. But it was still there. Still tugging at me. Now though, now it seems almost possible. That’s the change. Through my blog and the relative success it’s brought, I’ve realised that I still have plenty to give. I still have my voice. I still have my passion. 

It all boils down to one thing.During the hours my body won’t move; as my husband is bringing up our children and shaping their little lives, I lie in bed. He is doing something amazing and worthwhile. I’m laid in bed. I know there’s only so much I can push my body to do. Only so much energy I have. But I feel as though I’m wasting my life away. Here in my king size bed with the sounds of family downstairs, I almost feel as though I’m watching the clock tick by on my life. Doing nothing more than filling time until it stops. That’s so depressing. 

So there it is.. I need to work. To feel like somewhat of a provider. To fill those drawn out hours with something tangible. Maybe even stumble upon an old talent, or a new one? 

The only thing left to decide now is if it’s possible? 
Image provided by Lila Yocum

My Relationship with My Bed. 

My Relationship with My Bed. 

As someone with a whole host of chronic illnesses I have found myself in a love/hate relationship with my bed. I spend all day (for me meaning the four to six hours I’m up and about) with my body longing to crawl back into that warm, safe, restful place. Then, when I’m there, I wish I could be anywhere else. 

In recent months this relationship has skewed even more to the side of hate. If this was a marriage, I’d be seeking divorce! Why? Well, a huge part of the problem is the fact that I was duped by an unscrupulous online seller. I purchased myself a new bed and paid extra for the ‘luxury orthopaedic pocket sprung memory foam mattress’. What arrived was a flimsy, foamless thing that barely resembled a mattress let alone the words ‘luxury’ or ‘orthopaedic’. My old mattress would have been better, but seeing as it had spent a night in the garden during one of our beautiful British rainstorms, that wasn’t an option. Of course I tried to complain, but alas it was a fruitless endeavour. 

It’s only when stuck with a lemon of a mattress (after having a semi decent one) that you truly realise how important proper support in bed is. Since this change my symptoms have worsened ten fold. My back pain and issues with joints moving out of place has become so much worse. Each morning I wake in agony. The points where my body touches the bed scream at me. Begging me to do something, anything to help the immense pain they are in. Sleep should be restful. It should leave you refreshed and invigorated. With chronic illness that’s difficult enough to achieve, with a sub par mattress it’s impossible. 

That’s if I even manage to sleep. My insomnia has reared its ugly head along with the increase in my pain. All day my eyes droop and I long for my pillow. Once there, I’m awake! I toss and turn, desperately seeking a tolerable position to settle in. My body runs with rivers ov sweat as something in the mattress seems to exascerbate my already dodgy thermostat. Eventually I become still. Sweating and grimacing as the pain steadily engulfs me. Insomnia now overtaken by what we ‘in the know’ refer to as Painsomnia. When your body is exhausted, desperate and ready for sleep, but the pain curses through your being like a current of electric; forcing your body awake. Of course it’s a vicious circle. The worse you sleep the more symptomatic you become. The more symptomatic you become the more time you ultimately spend in bed. 

Snuggled up in bed with my daughter on a day I didn’t have the energy to get up.

It was as I lay awake in bed one evening, bemoaning my situation to a friend at the other side of the world, that I noticed the adverts adorning my Facebook feed. Almost all were aimed at ‘helping’ one aspect of my disability or another. Many of them were mattresses promising THE BEST NIGHTS SLEEP, EVER!! For all of a millisecond I felt somewhat perturbed that Facebook felt I didn’t deserve ‘fun’ adverts. Is this what my life had come to?? Mattresses and kitchen gadgets?! Then, as I changed position for the umpteenth time, I realised these Big Brother style adverts were actually exactly what I needed to see. I was actually ok with being spied on via my phone, because now I had access to products I otherwise wouldn’t have found. 

One particular mattress caught my eye. The N:rem Sleep System. This mattress has five different zones which you can tailor to your specific needs. Making each area as firm or soft as your body requires. I was intrigued. Even my decent mattress would cause me pain; to get the support I needed for my back it was too firm for my hips, causing them to displace and need clunking back on a morning. The idea of adapting a mattress to suit my needs was very appealing. Also, the mattress has a cool gel layer. A huge bonus for someone like myself who gets hotter than hell itself on a night in bed. Finally, the cover zips off to wash. Perfect! We all know that with disability comes gross bodily functions. A washable mattress is just what I needed! 

Immediately I contacted the company and offered to trial their product. Firstly because if I’m going to invest in something I want to know it is worth it. Secondly, because I was acutely aware these adverts were aimed at my community. Making claims of a better nights sleep and improved overall health. I wanted to see if that was true. 

It didn’t take long before I had my response. Whilst the company couldn’t send out a mattress to trial, they could provide me with the foam blocks which make up the various ‘zones’ of the N:rem sleep system. Obviously this won’t give me the entire package of benefits that come with a mattress, but I feel it will give a good insight into whether their claims are true. If these blocks can make my shonk of a mattress more comfortable, then I’m sold! So, the trial was set. The blocks were posted. They are currently adorning my inferior mattress. Initial results seem promising, but I’m going to give them another few weeks before I do my full review. I want to see if they will actually improve my overall health? If they do, you’ll be the first to know! 

In the meantime… if you decide you want to purchase this mattress for yourself, use code THISLITTLELIFE to get £30 off. 

This blog post is part of a sponsored review of the N:rem sleep system. All opinions within it are my own and in no way influenced by the company. This trial is not available to the general public. It is a one off that has been organised in order to create independent feedback on the product via my blog. 

The Appointment Arrived… 

If you’re a regular reader of my blog you may have read my Desperate Plea; an email I wrote impeaching a surgeon I’d seen months previously to help me. Basically I have prolapses galore since the birth of my son. That combined with years of bowel problems and slow transit has left me with severe difficulty when defacating, or even passing wind. To the point my bowel becomes incredibly sore and bloated, resembling that of a pregnant woman. This issue is really taking over my life, to the point I literally begged for the doctors help. 

Normal stomach and bloated stomach. This happens daily and you can see my tummy swelling.

Miraculously the surgeon actually read my letter and even responded within a few hours, promising to get me in his clinic. A promise he indeed kept. 

Yesterday was that appointment. The one I’d been simultaneously hoping for and dreading all at once. The one which is been mentally and emotionally preparing for. I’d steeled myself for the very real fact that he may tell me I couldn’t be helped surgically. I also looked into options I thought may be of help. Options which my friends and family believed would never happen. Never even be on the list. They were wrong. 

Yesterday, as I laid everything on the line to the surgeon he looked me dead in the eye and told me I had three options. 

1 – have a tube as small as a biro formed from my skin into my bowel which I would then flush through with saline every day forever. 

2 – have the prolapse repaired and then have the tube inserted if I’m still having problems. (Which I enevitably will have as my issues began as a small child)

3 – a colostomy bag. The option everyone but me thought would never happen.

I asked his advice. What do I do? He couldn’t tell me. Ultimately, this is my decision. It’s my body, my life, my choice to make. 

Whilst I understand that; a huge part of me wishes he had been able to promote one option above the rest. To take the responsibility from my shoulders and ive me someone to blame should it all go wrong. Or even if it goes right and I just have a tough day. 

Right now I’m in shock. I don’t know what to think and my emotions are all over the place. I’ve burst out crying and made many many inappropriate jokes since stepping out of that appointment. I’ve researched, and worried, and researched some more. There’s not been a walking minute where this huge decision hasn’t been nibbiling away at the corner of my psyche. 

People have said to forget about it. To put it to the back of my mind for now. My surgeon is going to discuss my case at the Multi Disciplinary Team Meeting. I will be having a Marker Study on my bowel to see which bits are pulling their weight. Then, in six to eight weeeks I will be back in to see him. Possibly signing up for surgery. It’s not that long to wait, but right now it feels like forever. 

I’ve asked around for people’s opinions. Many think have the prolapse repaired and just see how I go. Or just have the small tube. But, having lived with my problems, I know that neither of those will work without having both done. They cannot be done at the same time. So I’d need at least two operations. My surgeon couldn’t tell me if the flush outs would be painful. Only that they take at least one, maybe two hours and must be performed daily. Or every other day if you’re lucky. So even on days I cannot see straight, I’d have to get my ass on the loo, and stay put. If it’s anything like when movicol explodes through me.. it will be painful. I don’t know if that’s a sustainable option for me. 

So I come to the bag. A huge operation to form a (possibly irreversible) massive change to my body. Scary to say the least. The thought of never having to go through the ordeal of passing a motion through the traditional exit ever again though? That leaves me wanting to cry tears of joy. It’s not that simple though. I know I get a lot of mucous build up. So, if they don’t take my colon I’d still be having to go and evacuate that. If they remove my colon then the op becomes irreversible for life. Which would be the best option? Would I still be able to eat steak?  My body is super sensitive, could I cope with the adhesive of bags on me permanently? Would I still be able to eat steak? Would it be possible to stay hydrated so as to keep my POTS in check? Serously, steak? How would my EDS impact healing? Would it put my husband off me? (Regardless of the fact he claims it won’t.) Could I still sleep on my tummy? For the love of god, could someone just tell me if I could still eat steak???!! 

I have a lot of questions. New ones are popping into my mind by the second. But I’m trying not to focus on this too much. I’ve been called brave. But I’m not. I’m scared. I’m terrified. I’m frightened of having another operation. I’m scared of adjusting to a tube or a bag. Mostly though, I’m scared of having to continue as I have been for the rest of my life. I’m scared of missing out on my kids growing up. It’s that fear that pushes me forward. That stops me hiding in a corner and refusing surgery. I have a family to fight for. A family that needs me present, not locked away in pain. For them, I will do anything. 

** NB. The surgeon said my frank openness has been a great help in treating me. He wishes more patients would leave their modesty at the door and just tell him like it is. That’s perhaps something to consider at future appointments. 

The Gupta Programme… Cure or Cronk? 

The Gupta Programme… Cure or Cronk? 

I have been given this Gupta Programme trial as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

As you may be aware, since my blog has taken off I’ve decided to use my opportunity to trial some products that market themselves as being useful for the disabled community. This is because I often read reviews and wonder if they’re really true? Or if our community is just being used as an easy target audience for various companies. Knowing we are desperate for an improvement are they just taking our money with no real benefit? 

Recently I had the chance to trial The Gupta Programme. I partook in a three month programme which included live weekly seminars, DVD materials, workbooks and a gigantic infographic (the use of which would become clear on taking the course.) This particular course aims itself at people with Fibromyalgia, ME/CFS and Chemical Sensitivities. I cannot comment on if it helps with Chemical Sensitivities, but having a diagnosis of Fibromialgia and Chronic Fatigue, I can let you in on how it has (or has not) affected those. 

Firstly, a bit of the theory behind the course. Basically it is my understanding that Ashok believes research proves the Amygdala (a part of the brain) is the root cause of these illnesses. The theory goes that this part of the brain, which controls the bodies ‘fight or flight’ response is in a state of hyper arousal. The aim of the course is to re train this part of the brain, essentially calming it down and improving/curing these conditions. Apparently Ashok himself had CFS/ME and is now 100% cured! Something I’m sceptical of, but honestly I’m a sceptical kind of person! 

Image of the brain found on the Gupta Programme website.

Initially I was very sceptical of the course on a whole. It was only a state of complete desperation at my situation that lead me to join in with this trial at all really. In fact I even told Ashok about my reservations. He assured me it didn’t matter. As long as I followed the principles of the course I would still see improvements. I can’t deny, he did start to win me around as I fully took in the seminars. Things sounded much less crazy to me as many of the principals Ashok believes in are echoed by the several medical establishments I’m treated by here in the UK. He just takes them one step further and offers what I feel to be a ‘multidisciplinary’ approach. Where at hospital you would see a dietician, psychologist, pain managements team and sleep clinic all separately. This course addresses all those issues and more under one umbrella. Meaning, if nothing else, it’s definitely a very unified approach. 

Obviously I cannot go into too much detail about the course, it was three months long and included a whole range of information. But I can tell you that for me, it was the seminars that were the most useful part. Particularly when I was able to catch them live as it meant I could ask questions and give feedback. Seminars were at 6pm each week, the link being sent in advance. Though ideally you’d see them all live, you are able to watch at a later date. This can be to refresh, take notes or if you’re too tired to catch the original. Ashok is a huge promoter of pacing, so it’s important not to push yourself to join a seminar if you’ve already pushed yourself to the limit that day. 

Ashok articulating his point during a seminar.

The seminars were both interesting and enjoyable to watch. I certainly didn’t feel bored or zone out throughout any of them. He doesn’t advise taking notes during the original sessions as it’s important to listen and take in what’s being said. So sometimes it’s worth re watching if you think there’s things you want to note down. I even had a few lightbulb moments during the seminars. One being very early on in the course. I asked a question in which I referred to myself as ‘unable to be fixed’. Somewhere along the way I had lost the belief that I would ever get any better. Without that belief I had huge barriers up to improving my health. 

Along with the seminars was the workbooks and little homework tasks. It does sound overwhelming but on the whole it was doable. There’s nobody checking whether you’ve done these things, no qualification at the end. So no pressure. Basically you get out what you put in with this course. If you don’t bother following the principals then you’re not going to see any improvement. However if you give it a fair try, then who knows? 

Personally, I do think I’ve been helped by this course. Have I been cured? No. But I have other illnesses on top of those listed. So I would always have had those. Genuinely though, I do feel I’ve improved. I don’t know if my pain has reduced, or if I’m just coping better with it. But I do feel less burdened by the pain I’m in. Also, I have been managing to get out and about and do more. I took to heart the idea that an idle mind has more time to dwell on pain. So I have taken on some new challenges in my life. Things that I perhaps wouldn’t have done without this course. 

So, is it worth the money? Though it hasn’t been curative for me (at least not yet) I have found this course beneficial enough that I do feel it would be worth the investment. It does need to be understood that it’s not just a financial investment. As I said before, you really do get out what you put in with this Programme. If you’re not willing to work at it, then you won’t see the benefits. Also, it’s not a quick fix. You have to make life long changes. I myself started slipping back into old habits recently, and soon saw a decline in my progress. 

I’m glad I took this opportunity to trial The Gupta Programme. I’ve even recommended it to a few friends. Mentally and emotionally I feel it’s placed me on a much stronger footing to deal with any health trials I may have to deal with in the future. I’ve even recommended it to friends and family! Particularly as there’s a money back guarantee, so even if they don’t have the progress I have had they don’t lose anything. 

So while I cannot personally profess to being cured by this course, I can say it’s been of benefit to my life. I will continue to follow the principals in the future and am hopeful those benefits will continue for my future. 

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 Secratary. 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,

J

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.