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. 

Medipen, The Big Decision. 

Medipen, The Big Decision. 

Many months ago I wrote a blog about my decision to use a cannabinol vape pen to help with my pain. Cannabinol is an extract of cannabis, which doesn’t get you high. It does however claim to have many health benefits and I was interested to see if these were true, or just yet another money spinning hoax aimed at taking advantage of desperate people. 

Initially I intended to write up my findings within a month or two of trialling the product. But life had other ideas. So here I am, several months and a major surgery later, ready to share my findings…

First off about the pen itself. I found the product very easy to use and nice and light to hold. The width is similar to that of a good ballpoint pen, as is the length, so a great size to carry around. I bought a second USB charger to have in my handbag, this allowed me to have one at home and one for if I ran low when out and about. The second charger was pretty redundant though, these little gadgets hold their charge surprisingly well! Usually I would just pop it on charge in my laptop as I did a little ‘work’ (writing, checking Facebook, photo editing, checking Facebook, networking, checking Facebook) and it filled up in no time. Overall for simplicity and style I was very impressed. 

Contents of the Medipen starter kit.

As a none smoker I was incredibly nervous about using something which reminded me so heavily of a cigarette. Particularly in the way I had to inhale it. I wondered if I would get used to it, or even be able to tolerate it at all? 

Medipen contains no nicotine at all and is in no way addictive. 

I need not have worried. Medipen cartridges are available in many different flavours, more than I would have imagined! I tried the mint, cherry cola, coconut and white grape. They were all pretty good, though the coconut tasted a bit too much like a Piña Colada for me! I was surprised at how much flavour you could pick up just from inhaling vapour, the taste was really enjoyable! My favourite was by far Cherry Cola with White Grape coming a close second. What was also nice was that inhaling the sweet vapour helped me eat less actual sweeties, something I do far too much of when I’m in pain. Plus, the vapour has some of the scent in it from the flavour. I became my own air freshener whilst vaping! 

Not that there is much vapour cloud. Another thing I was worried about was filling my home up with a damp cloud of acrid smelling fog. I’ve been in ecigarette shops before where you can barely see your hand in front of your face. I didn’t want that for my home, and I’m glad to say I didn’t get it. The Medipen uses a wick to draw the vapour up to your mouth, meaning you get a steady amount. You really have to draw hard on the device to form a large cloud, and honestly there’s no need. A gentle inhale for a few seconds gets you plenty of vapour, flavour and cannabinol; without billowing out smokey mist clouds for all to see. The Medipen is discreet. Refined. Classy. 

What I expected vaping to be like on the left, versus what it was actually like on the right.

As far as usage goes it’s really up to you. I found that a few minutes of use on a morning, at lunchtime and before bed suited me. Though occasionally I would use it in between if I was having a bad day. I liked to keep my pen with me as knowing I had the extra help was a comfort in itself. My level of usage meant each cartridge lasted around three weeks, even with my husband stealing some for the occasional headache or general ache or pain. By the end of the experiment he was using the Medipen each evening with me as he found it also benefitted him in some unexpected ways… 

So that’s the basics covered. Now down to the important part. DID IT HELP??

Honestly, I have to say that yes it did. I was completely ready to be disappointed and instead was very pleasantly surprised. Do not get me wrong, the Medipen is not a miracle cure, but it did help me with my multisystemic problems. My pain was decreased to the point that I could function better. I could move without wincing and walk without feeling as stiff. On some days I even managed to reduce my pain relief, something I have not been able to do since I went back on my medication after giving birth to my son. 

The evening ‘dose’ relaxed me and calmed the random cocophany of pains and sensations I usually have cascading through me. I have Dysautonomia which causes my body to always be on high alert. Settling down for rest when your body is tick tick ticking away is never easy. In fact it’s nigh on impossible. But with my Medipen I could feel my body calming and the tension easing from my muscles. Though it could often still take me a while to drop off, the chances I would sleep were higher. Plus, the sleep I did get was much more restorative than usual. A benefit I’d read about, but been highly sceptical of. 

It was due to the help I had with sleeping that my husband decided to try the Medipen one evening. He himself is a restless sleeper and spends many nights tossing and turning. I gladly offered to share, why should I be the only one reaping the benefits of our new little doohickey? Surprisingly he dropped off within minutes. Much faster than I do. I guess that’s the benefit of a properly functioning body, things work better on you! But what was even more surprising was what else happened that night…

If my husband used the Medipen before sleep not only would he rest better, he slept silently!! NO SNORING!!!

Usually my husband not only snores; but talks, moves and sometimes even gets out of bed! To be calm and quiet was not only got for him, it was GREAT for me! My often tired and grumpy husband woke with a spring in his step, and I didn’t consider committing murder each night. Definitely a win win! 

As always I woke on a morning feeling like a dogs dinner. But, I did find that whilst using Medipen that feeling subsided faster. Usually I don’t see mornings at all. During this trial I woke around 9/10 am each day. After an hour or so to come around and allow my heart medication to work I could actually get up and dressed. I had the energy to go out and do things, or cook, play with my children. I could be a ‘real’ mum! 

My main worry was having even less energy whilst using this product, I couldn’t believe I had more! 

Yes I still had to be careful and pace; I couldn’t do as much as ‘normal’ mums could. But I could do enough to give me my smile back. Enough to make my children feel they had more of me. I could be present in my own life. We went on holiday towards the end of my trial, a break at a holiday park in Yorkshire. On every other holiday we’ve been on my husband has taken charge, but not this time. I not only participated, I had fun. I was out doing things with the kids every day. Ok, by ‘doing things with’ I mean I watched them doing activities; but that’s 1000 times better than being stuck in the van whilst they go have adventures without me! 

Having fun with my kids on holiday.

I found that even during the day the Medipen calmed me. Not so as the make me sleepy, just to make things easier to handle. When your body is constantly in pain, and teetering on the edge of ‘fight or flight’ mode, it’s easy to have a meltdown. Me seeming moody or snappy is commonplace in my household. Crying feats and explosions of anger are also not unheard of. During the trial these episodes happened much less often. In fact, when things happened that would usually have my heart racing (more than usual) and adrenaline cursing through my veins, I actually managed to remain calm and carry on. My driving improved, how I coped with others driving improved. I had more patience and could shrug things off better. 

Of course nothing is perfect. At times my pain would still sneak through and bite me on the bum. Also, I did find it hard not to forget that though I was feeling better I wasn’t ACTUALLY better. The Medipen is not medicinal. Whilst it can take away feelings of pain etc, it does not cure the underlying cause. I did end up crashing a couple of times during this trial and ending up back in my bed. It’s easy to do too much when you start to feel human again. But it’s a learning curve. One that I was happy to be on! I’d rather crash from doing too much than not be able to do anything at all! 

But; I hear you asking yourself, why is this blog in past tense if the product is so good? Why is she not using it anymore? Well my friends, that’s where the surgery comes in. As cannabinol is still so new to the medical community, and not yet sanctioned by the NHS, I was advise to stop usage before my operation and for a time after. It’s now a month since my surgery and I realise that now I have to make a decision. 

I thought my big decision was whether to try the Medipen, in fact it’s whether to continue to use it long term. 

The Medipen is by no means a ‘cheap option’. Living on disability benefits the cost per cartridge is arguably quite high. (Though I must point out it’s much cheaper than smoking!) I have to ask myself, are the benefits of the Medipen worth the financial implications? Would I be better spending that money on other things? Am I being selfish? Would my family be better off if I used the money elsewhere? These are all questions I’ve been wrestling with for the last month. As I’ve been pretty much bed bound, struggling to sleep and barely coping with my pain. Can I take money from our family pot and spend it on me?? 

The answer is yes. 

Because when I do better, my family does better. My relationship with my husband improves. My children are happier. Life in general is just easier. Sure, I could use that money on toys, trips out or takeaways. But they hold no real value to my family. What we need is to make memories together. I want to be at the park, feeding the ducks with my husband and baby. Not home watching videos of it on my phone. They want me there too. I’m sick of being backstage in the show that is my family’s life. It’s about time I was up front and centre! I owe it to them, I owe it to myself! 

So tomorrow I order my new cartridges. I restart my Medipen journey; and I hope I see the same results. Then, in the spring, I hope to be writing an article outlining how I’ve found long term use of Medipen. I really hope that, unlike with medications, the benefits do not ware off with time. I’ve got a good feeling that they won’t… 
*Please note that I received my Medipen and cartridges free as a Thankyou for writing about my experiences. All opinions in this blog are honest and my own. 

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. 

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!!