The Aftermath of my Appointment.

The Aftermath of my Appointment.

So, I’m here again. Trying to kick off my writing..

I have spent the last year fighting tooth and nail to get help with my neck problem. I raised money. I got it diagnosed. I saw specialist after specialist and finally I got in with one of the best neurosurgical teams in Britain at, apparently, the best hospital.

They dragged me down there for appointments, pressured me into dropping my other doctor, then discharged me with no help whatsoever.

When I say no help, I mean it. “Sorry we can’t do surgery on you” (yet admitted they would for anyone with my issues without EDS) “You’re discharged.” That’s all I got. No advice on how long to wear my collar, what collar is best, where to turn for any form of palliative care, if I’m going to degenerate further… The list goes on. I never even got to see the doctor I was referred to. Yes I did ask. I also asked all my questions. I was met with shrugs and I don’t knows.

Then the worst happened, I fell apart. I fell into a million pieces in front of both of my kids. (My specialist was in London and we had no choice but to take them due to circumstances at the time.) I saw my life stretching before me and it terrified me. It still does. I’m desperately trying to piece myself back together whilst reassuring my kids I was just overwhelmed at the doctors. I am not lying, I was overwhelmed, but the thing is I still am.

That evening, so my children didn’t have a night of listening to me sob in a hotel room, we dragged my broken body and soul to Winter Wonderland. I couldn’t walk round, so we went to the circus. My children thrilled at the spectacle in front of them and seeing them happy made me and my husband smile, at least for a little while. We took lots of photos of the pretty lights, it may seem we were there for an age. We were not. It was the circus then home. Home being a hotel room where I fell into bed in agony, an agony of my body, mind and soul. An agony unlike anything I’ve ever felt.

The next morning was back to our home, but to make the visit a little more special for the kids we took them to the Natural History Museum first.

It may seem strange, ‘claiming’ to be in so much pain but still pushing on. However, as a mother, something took over me.

A need to push the memory of me breaking down out of my children’s heads. Show them I’m ok, even though I’m far from it. I wanted to fill their minds with wonder and excitement so they were the lasting memories they brought home from the trip. Me too I guess.

Again many photos were taken. Again many smiles were seen. All were uploaded on my profile. I love to share the fleeting moments of being a ‘mum’ to my children. Most of the time I feel almost ghost like in the home. They know I’m here, but I’m never quite seen. The museum was genuinely a wonderful experience and great for access. So was Winter Wonderland (or at least the small part we saw). But inside, I was millimetres from falling apart. The whole time I was going out of my mind at the thought of a life like this, wondering how far I’d decline, how rapidly?

As the photos uploaded the likes from family and friends rolled in. They know how important these times are to me, how hard it is for me to achieve a few hours out and about. To keep that smile on my face.

Sometimes though, sometimes I wonder if I’ve gotten too good at it. Comments consisted mostly of how nice it was to see me ‘genuinely happy’. Even on the evening after my appointment where I’d originally told my husband I didn’t want to be in any pictures because I couldn’t force a smile. The evening I made sure I was too exhausted to sob myself to sleep so my children didn’t hear me. Even then I looked genuinely happy.

That scares me. It scares me because how can I reach for the help I need if people can’t see the cracks that run so deep? Why would anyone believe how bad things really are when I hide it so well? Am I hiding it for my children’s sake, so they’re not afraid, or because I can’t face it? Because if I do I’m afraid I just won’t be able to take it? Honestly I don’t know the answer. But I do know this..

I’m not the only person that does this. Many of us in the disabled /chronically ill community hide our pain. We put a veneer of smiles over our heartbreak and show that the phrase ‘you can’t polish a turd’ really isn’t true. My life had honestly gone down the toilet, but a few sparkly lights and a smile I ensured reached my eyes and all was well. I also know I’ve not been writing here because when I write I open up and a culmination of exhaustion, depression and certain events, has left me afraid to do so. But I had to write this. I had to get it out. Because I can’t fall into old traps.

The last time I hid too well behind a mask of smiles I left myself completely alone at the point in my life I was most vulnerable. I almost lost myself entirely.

I will not do that again. To those of you also hiding behind those smiles, the posed photos which hide the pain; some even making their illness worse to appear ‘normal’, I implore you to try to open up. I used to. I’m going to try to again. Not to seek attention. Not to garner sympathy. Simply to show the truth of my life. To help me accept it and hopefully find a way to come to terms with my new reality in the best way I can. This, this is the reality of that night…

Trying to hold it together as I lay full of worry in a room with my family.

Please note comments have been turned off on here due to trolls who hide behind no name, if you’d like to comment please do so on my Facebook Page @Littlelifeofmine where all posts are shared.

My Stoma Story.. My First Night in Hospital. 

My Stoma Story.. My First Night in Hospital. 

I had hoped to update regularly whilst in hospital. Unfortunately the signal on the wards where I was staying was absolutely terrible; so that wasn’t possible. I couldn’t even FaceTime my kids regularly. Instead I took lots of pictures to document my stay, now I finally feel up to sharing My Stoma Story with you via a series of blogs; starting with my first night in hospital… 

Day 1: 13.6.17.

Rather than turning up the morning of my operation, as I did with my hysterectomy, it was decided at my pre op I should arrive at hospital the day before my surgery. Due to my health issues my surgeon and I thought it best I do a bowel prep in order to clear me out ready for life with a stoma. As horrible as that was, I’m so glad I did it and I’d recommend anyone else take the same approach. Clearing out meant I could concentrate on getting used to my new stoma without having the pain and difficulty of getting any remaining stool out of my colon. It was this clearout, and my need to remain hydrated throughout (thank you POTS) that landed me in hospital a day early. 

I’m not going to lie, I arrived at the hospital completely terrified. But that calmed as soon as I was on the ward and settled. The nurses were friendly and the other ladies in my room seemed really nice. There was four of us and we chatted most of the afternoon away. My husband and son stayed to settle me in before leaving for the school run, it was then the serious business of preparing for my operation began. 


First off the stoma nurse arrived, she drew two ominous black dots on my bloated stomach. One of these would become my new stoma, we wouldn’t know which until after surgery. It suddenly dawned on me that after the surgery my stomach would never be the same again. It’s strange to look down on your stomach and know that in less than 24 hours your entire anatomy will work in a completely different way. That this relatively ‘simple’ surgery would change your life drastically. I looked down at those dots for a long time, contemplating the journey ahead. Little did I realise quite how much things would change. 

Marks are put on both sides of the abdomen in case internal scarring prevents the bowel from being pulled through to the surface in one particular spot. The same part of the bowel will be pulled through regardless of which side it comes out at. 

Even though these marks just look quite haphazard, they’re actually pretty carefully placed. The nurse had me sat down and stood up, I also wore my favourite jeans in order to try and avoid their wasteband. The nurse will try her best to mark the surgery site so it is easy to access whilst being comfortable with your usual wardrobe. Obviously placement can never be guaranteed though, it all depends on what the doctor finds inside. 


To try and take my mind off the daunting task ahead of me I arrived at hospital with a bundle of goodies. My friend had kindly bought me a colouring book and pencils, I’d also filled my iPad with all the remotely interesting free books I could find. But most importantly I had a plastic cup which had been lovingly decorated by my daughter. Not only the cup, but the box too. Love hearts, kisses and words of love adorned each side of the box. I read them over and over, reminding myself constantly of the people who I was truly doing this for. 

Of course I wanted to feel better in myself. But it was my need to be more involved and present for my little family that really drove me to have this operation. My husband and children are my world and I want to be as well as possible for them. 


Lunch arrived at around twelve thirty. My nerves were running riot and the meal they offered me did not appeal. I couldn’t even force down this soggy short bread and ice cream. Luckily I still had a pastry left over from breakfast which was just tasty enough to be worth feeling nauseous for. If only I’d known that within minutes of my meal I’d have my cannula placed and be told I was no longer allowed anything solid; I may have thought differently about my lunch! 



Two hours later and it was time to start the dreaded Picolax. For anyone who hasn’t tried it, this stuff is basically liquid dynamite! Created to clear out the bowel quickly and efficiently, most people choose to sit as close to a toilet as possible when they take it! The nurses on the ward, and some of the patients, looked at me with pity as I struggled to gulp down the putrid mix. To me there is little on this planet that tastes worse than Picolax, I literally feel it hitting my stomach and starting to pummel its way through my bowel. Keeping this stuff down is definitely not the easiest task for me! 

Soon those looks of pity turned into confusion. Why wasn’t I running to the toilet? An hour passed. Then two. Three. Four. It was almost five hours before the Picolax had ANY effect. Even then it was not the bowl shattering poonami they were expecting. ‘Luckily’ they had more Picolax for me to drink.  By round two I was exhausted and looking nine months pregnant. My POTS meds had worn off and I was walking like a weird chicken zombie hybrid. This was turning into a long night. 

As I speed shudder shuffled to the loo for the umpteenth time the lady from the bed opposite me chimed up, ‘You know I couldn’t understand why you called your husband your carer when you arrived. But looking at you know I completely get it.’ Thanks. For anyone thinking of pointing out my inadequacies in future, regardless of motive, please don’t. 

The night wore on; even with my earplugs, cushion and sleep mask, I was in no way able to sleep. Yet it wasn’t my stomach tying  itself in knots or the possibility of a river of molten lava spewing forth from my nether regions without warning that was the issue; unfortunately I’m pretty used to those symptoms. No, the issue was my nerves over my impending operation, aggravated by a series of conversations I had had throughout the evening with my bedfellows. 

You see, the lady opposite me had stomas. Stomas which she didn’t exactly love. In fact, she believes many of her current health issues relate back to her previous stoma surgeries. (Due to my preoccupation with my own problems, hunger and exhaustion, I didn’t fully understand the timeline of her declining health. However, it did seem to me that her main issues pre dated the stomas.) Though I felt sad for her that she held so much resentment and mistrust towards doctors, I tried hard not to let her experiences colour my own. 

What I did find upsetting was when she bragged about chastising another patient for having her ostomy bag on show. Telling all of us in earshot how disgusting it was and how she feels the new movement to try and normalise stomas just encourages people to stare. Which they will, because it’s weird and disgusting. 

Her words really shook me. To the point I closed my curtains and sobbed silently to myself. Totally oblivious the woman carried on talking about how gross it was of anyone to see a bag, even with a cover on. We should all respect others and keep it hidden! Another patient popped her head around the curtain and sat with me a while. She had seen my upset, and even though she wasn’t quite sure what a stoma was, she wanted to help. ‘Ignore her’, she said. ‘It’s her age, she’s a prude, people won’t really think like that.’ I nodded in agreement. Wiped my tears and told her I was fine. 

But I wasn’t fine. 

The very next day I’d be having surgery to have one of those ‘disgusting’ bags. I knew that thanks to my issues with pain relief I wouldn’t be able to stand anything over my tummy, my bag would be on show. My see through bag that was surely much worse than a regular fabric covered one. Would she be on my ward then? Would she chastise me too, at a time I’m most vulnerable? My mind wandered further into the future. To my holidays and summertime. Should I hide my bag? Would a cover not be enough? Would people really stop and stare like the woman had said? She had lived it. So surely she knew? Or was she just paranoid thanks to already hating her extra appendiges? 

Question after question swirled through my mind. Worry after worry. Too tired to colour I attempted to take my mind off things with mindless games on my phone. I tried to block out the worries that crept in and gnawed at me. I tried, and I failed. 


Like with all other difficult nights I’ve lived through, the darkness eventually passed. As the sun rose I finally closed my eyes and managed to catch a few precious hours of sleep. It was then, as I closed my eyes to try and make the hours pass faster, that I vowed to myself I wouldn’t let anyone’s issues define me. Nobody else’s opinion will affect what I wear and how I live my life. In a matter of hours I would be getting operated on. An operation I was sure would improve my life. No way would I let anyone else’s negativity impact me. Yes, my nerves were still there. But now my determination had returned, for that I was stronger. 

To anyone else facing surgery and going through similar emotions as me, I say this: Fear is not a sign of weakness. To find something terrifying to the point of sobbing your heart out yet still go ahead with it is a sign of true strength, not weakness. Never beat yourself up for being afraid or upset. Just work through it and continue on your path with determination. 

To be continued… 
* Please note that my experiences in hospital may not reflect your own. I am simply documenting my journey in the hopes of spreading awareness and alleviating any fears I may be able to. 

Check back soon to hear all about surgery day and my early recovery. 

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. 

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. 

There is another way…

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 briwnies. 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. 

Its arrived!!

I’m fighting a battle. 

Tonight’s blog post was going to be about the massage I had today and it’s beneficial affect on my body. It was supposed to be happy. Upbeat. Light. 

But I’m not feeling light right now. I’m laid in bed, it’s the middle of the night and I’m feeling anything but light. The weight of the world pushes hard upon my chest, constructing my breaths to short painful gasps. Or at least so it seems. My mind whirs away hashing and rehashing over my problems whilst the stress that was released earlier seeps back into my every sinew. It gnaws at me, scratches at the corners of my thoughts, spoiling them. Fraying them at the edges and pulling at the seams, until they unravel and I’m left with only my stress and a tension headache.

At the moment I’m fighting a battle. A battle no parent should have to fight. I’m fighting with my daughters other biological parent for what I feel is best for her. No, before you think I’m one of ‘those’ women, I’m not trying to keep him out of her life. I’m trying to get him involved. I’m trying to make it so instead of a 200 mile round twice monthly trip, she has that trip only once a month. I’m trying to encourage her biological father to come here, instead of forcing her to always go there. To miss birthdays and events, clubs and memories. 

Since she was young she’s visited him. I’ve always encouraged it. In fact me and his family almost forced it upon him. But those visits have always been on his terms. She has to go there. He will not visit here nor attend anything for her up here. Which I’ve said all along will not work for her forever. As she’s grown up she’s been made to choose between seeing him and going to birthday parties. Seeing him and attending social events. No compromise. No fluidity. Just choose. Here. Or there. 

Recently things changed. She chose. She chose a club which helps her with her health. She chose to only visit there one weekend a month. She chose for her biological father to come here. To support her. To be involved. He is fighting against that choice. He is taking things down an official route. He is bribing and cajoling to get his way. 

But things run a little deeper than just being able to join in clubs and see friends. In fact, last week, things just got a whole lot more serious. My daughter went to a geneticist. She has EDS. Hopefully the same type as me, but at this point it’s not certain. This diagnosis is now a weight on her shoulders. It is now her shadow pulling at her, caught beneath the boulder of EDS and holding her back. I saw the signs. I knew this day would come. But I prayed I could work with her biological father to do things right for her. 

Her club, the weekend hobby that’s unimportant, has actually built her muscle tone so much her EDS has improved in her arms and legs. On the weeks she’s not travelling so far she is easy to get up for school. She’s calmer. She’s happier. She’s well rested. She’s as close to perfect as any child could be. I’m trying to teach her to pace. The doctor stressed how important rest was. Travelling long distances in a car does not constitute rest. 

But today. Today I found out everything regarding her health seems to have been pushed aside. Her need for her biological father to take part in her home life has also been pushed aside. The system that’s supposedly all about the needs of the child seems to be veering towards being more concerned with making life easy for her biological father. 

So here I lie. Stressed. Worried. Tying myself up in knots. 

I’ve tried my best. I’ve explained her needs to her, her biological father, everyone involved. I’ve gathered statements. I’ve spoken to doctors. I’ve done everything I can. I feel like I’m shouting to a crowd of people wearing ear defenders and not one of them is willing to take them off. People don’t understand. My daughter doesn’t understand. She can’t. She won’t understand until she’s older and in agony. When she looks back and sees the safety nets I tried to put in place flung aside. Until she sees a wrong turn was made. 

I hope beyond all hope she doesn’t end up in the same crippling pain as me. But I fear now she will. If she does, who’s fault is it? The biological father who refused to listen to her needs, or me the mother who passed it on? 

No matter the answer, I know I’ll always blame myself. 

My Time. 

My Time. 

There is a time on waking, a special time. A time that holds hope and wonder. A time when magic is still real and fairies flit between dust bunnies floating in the air. A time when dreams are fading out of focus, but still close enough to grasp and hold onto if only for a fleeting moment. 

Sometimes, if I’m lucky, I can hold onto this fleeting reality for what seems like an eternity. Most often it passes in a heartbeat, gone and almost forgotten all too soon. 

Do you know this time? The time between  sleep and awake, when you can hear the world around you while your body still sleeps. Even if you wanted to you couldn’t get up, a glorious weight pins you in place. You are limp, at rest, snuggled in that perfect position only a sleeping soul can find. Dreams are still dancing behind your eyelids, though they appear softer now, and peace is etched upon your face. 

Do you know it? Is it as previous to you as it is to me? Because, you see, in that time I am me. I am not sick. I am not in pain. My joints do not creak and click. I am not exhausted to the point where breathing is a physical effort. My skin and eyes and throat aren’t dry, or if they are I cannot tell. I’m neither too hot not too cold. But mostly, I am me and I am not sick. I am free to ponder hopes and aspirations that are forever out of my reach. To daydream in a state of just enough consciousness that it’s believable. I can be myself. No limitations other than time. 

Then whoosh! It’s gone. The blink of an eye, a deeper breath, the slight snuffle of my son in his cot. The tiniest thing can click my conciousness up a notch and reality comes crashing down upon me like a tonne of bricks and sand. Glass, ice and molten lava. All at once my body is awake, and though not yet able to function it can feel. I can feel the tension in my muscles, a tension that never eases but is thankfully less noticeable in slumber. I can feel the itches an prickles running riot over my skin. I can feel the pain pulsing through every fibre of my being. I can practically hear my nerve endings screaming at me as my joints behave like unruly tea avers, unwilling to stay inline. 

Inevitably I lay there. Trying in vain to drift back to that sweet place, just for a few seconds more. But I am never that lucky. Sleep doesn’t come easy to me. So instead I try to pull myself together. I paste on a smile and face the day, be that functioning or recovering in bed, I face it. But behind my smile, in a tiny part of my brain, I keep that special time. That time where I can be me. And when I can’t quite cope, I look upon it and smile. Because tomorrow, I will have that glamour of peace once more. 

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 witching 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. 

Sleep, sleep would be good here…

Sleep, sleep would be good here…

Once upon a time I could sleep. Well, I assume I could. Surely I wouldn’t have got this far in life without it? Plus, my mother used to assure me I slept with my feet in a grow bag, hence being a fairly tall girl. (Taller than my husband.) So in order to grow so proficiently I must have slept, right? I bet I slept at night too. When I was supposed to.

Often I dream of sleeping. Of drifting off into a blissful slumber and waking up refreshed and invigorated (HA!). But even they are daydreams, not those cool dreams you normal folk have.

You see, I don’t sleep anymore. I haven’t slept properly in years. Even if by some small miracle I do drift off, it’s short lived and not particularly restful. If I’m super lucky it’ll be combined with night sweats and bad dreams. The kind of dreams that leave you with a terrible feeling in the pit of your stomach.

More often I just lie here, restless and uncomfortable, wishing sleep would come. I listen to the sounds of the house. My cats milling about, my husband snoring (count to ten, you’d miss him if you smothered him), that random noise that you never quite know what it is. I drink my water like a good girl and make endless trips to the loo like an old lady with bladder issues. I write on Facebook and play games on my phone. I go slowly and quietly mad.

This is my life. If I had any less sleep I could probably start hanging out with the gang from Twilight.

What’s the point of this post?? There isn’t one. I’m rambling. I’m making no sense I imagine. But you know what they say, misery loves company. If you’re awake in the night and reading this, at least you know you’re not alone!

To the rest of you… Sweet dreams. Don’t take your sleep for granted and remember, a tiny part of me kinda hates you for your sleep pattern right now!!