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.

Who’s Watching You?

Who’s Watching You?

Hi folks. I don’t know if anyone even reads this anymore, it’s been such a long time since I wrote anything on here. Serious health decline is my excuse, but that’s not the real reason. The real reason is somewhat more personal.

You see I started getting comments on blog posts. Personal ones. Talking about my life and saying I’m faking my illness. They even commented on how often we got take away delivered to my house! This continued to escalate. So called friends and family who never actually see me as they live at a distance started with similar diatribe. How I’m always moaning but theirs clearly little wrong with me. I need to try harder. Push further. Put up and shut up.

I felt like judgement and accusations were coming at me from all angles. That I couldn’t talk about any aspect of my life anymore. If I have a good day and do something, I’m a faker. If I have a bad day and talk about it, I’m an attention seeker. I couldn’t win.. everyone was forcing down my throat that I’m a loser.

This culminated in someone reporting me for benefits fraud. Why? Because I was taken to Florida with my family and my daughter went on a slide that apparently had 216 steps. (Ironically this was on one of the days I was in and out of sleep in the hotel. Crying about the fact that even with a scooter I couldn’t keep up with the rest of the family and I was letting the kids down. Upset that I was spoiling the holiday for everyone and believing I should have stayed home. I forget which of those days she went to that water park, there were a few where my body gave out on me.) They must have overheard her talking about it and assumed I went up them too seeing as the exact number of steps were reported.

I was completely truthful. I told the lady I had been to Florida. I hoped to save up over the years and go again, at my own pace rather than trying to keep up with everyone else. So my kids don’t see me left behind. So we can do all the things we missed. So they can actually get to see the fireworks. I told her about my scooter and the lifts to any ride I did manage to go on. How my neck issues are a new development and I haven’t even reported them as I would be entitled to higher carers and that would mean they’d use the opportunity to swap me to PIP. Stress I don’t need right now. With POTS and my other problems I’m allowed on rollercoasters!

I told her how I felt watched. How I have to try my best not to wear my collar and I’m judged if I leave the house without it. I told her that if I’m having a good day I will continue to go to the park with my kids. If I can manage it I’ll take my son down the slide. I’m going to grab every opportunity to do everything I can with my children when I can, because too much of my life is either in bed or in hospital. Do you know what she said?

She said ‘Good for you!’ She told me it was clearly a malicious report and they see it a lot when people have unseen disabilities. She told me I have to ‘stuff the lot of them’ and live my life as best as I can. If I want to save and go on holidays (Not that I actually can right now, but the hope is there) do it. If I want to go to the park. Do it. Live my life as best I can and don’t apologise for it.

So this is me saying a big fat F YOU to all the people who have tried to drag me down this year; the hardest year of my life. I will keep fighting for my health, I will keep resting when I need, I will also keep going out and enjoying precious moments with my family when I can. I’m not just disabled, I’m a mother, wife, lover, friend, woman.

I’m disabled, not dead and I have as much right to living my best life as any of you! I will not apologise. I will not explain. I will continue to paint a smile on my face whenever I can. Myself, my Doctors and my husband and kids know I’m no liar. That’s enough for me.

PS. Comments will be switched off on this page from now on due to people hiding behind anonymous comments on here to give me abuse. If you would like to comment on this piece please feel free to do so on Facebook where I shall be posting it on my page: This Little Life of Mine

Off to the Seaside… 

Off to the Seaside… 

Today I went to the seaside with my family. We had fish and chips. Walked the promenade. Sat by the harbour and explored down the stairs where people were crabbing. Took the kids down to play on the sand. The day was finished off with candy floss and ice creams and a drive home in the sun. It was pretty much perfect. Or at least it was to the kids, to social media.  

But that wasn’t my day. My day started with my husband telling me it was time to rise and me point blank telling him there was no chance. I needed another half hour, minimum. It started with me feeling shaken  and achey, with a temperature I’ve been unable to shift and a bag on my belly rapidly filling with fluid. You see I haven’t found that sweet spot with my output yet. My stoma is still in its infancy and I’m either sloshing out boatloads of liquid or blopping (yes I made that up) out very thick sludge. There is rarely an in between. Today was fluid. Mornings are often fluid, which doesn’t seem to help my body when trying to take my meds and hydrate. 

Fast forward to leaving and there’s me desperately using my jacket, bag and a cushion to try and prop myself up in the car. My neck and lumbar spine have been complete agony recently, to the point it’s getting a little/a lot scary. Just getting myself dressed and ready had taken so much out of me I was half an hour late with my POTS meds and hanging out of my A hole. Meds administered I peeked up about half way into the journey and started to feel hopeful for the day. The sun was shining, my family was smiling and I was just about on the right side of coping. 

Arriving at Brid we pulled up and hunted down a fish and chip place for lunch. We always start with lunch. Our days out are really only afternoons, I don’t have it in me just yet to cope with a full day of driving and walking around. Not even on a good day. The chippy was a pleasant eat in place and I could see out over the bay from where we sitting. Food didn’t take long and really was very yummy, especially the chips! They reminded me of the type we would get when I was a kid. All good so far! 


Until it wasn’t anymore. About halfway into my meal my stomach began to hurt and I felt hot. REALLY hot. I stripped off my jacket and ploughed on, its not unusual for a meal to have strange and uncomfortable effects on my temperature. But this time, things just kept escalating. As I began to feel myself shudder internally I knew I had to lie down. Immediately. 

Opposite the chippy was a set of two benches. Just about close enough that I could make it safely. I quickly told my husband and beat a hasty retreat, my toddlers screams ringing in my ear as I left. I felt guilty as sin, but I knew I couldn’t turn back and console him. Waste any time and he would likely see me fully flake for the first time in his little life. I’m not ready for that, neither is he. As I reached the bench a rather bedraggled looking man plonked his backside right in the middle of it. Luckily there was a second one. Not so luckily it was right next to a huge bin. But beggars can’t be choosers and I made the best of it. My bag under my head I laid out, ignoring the stares from strangers as I hid behind my over sized sunglasses and stared out to sea. At least the view across the harbour wasn’t half bad!


Soon enough, a little too soon for my body, my family emerged from lunch and I had to scrape myself up and slope down the incline to the promenade. The second I stood my body started screaming at me. 

Idiot!! Get back down!! What the hell are you trying to do to us?! You need to be horizontal, horizontal was working!! At least sit your ass back down somewhere, anywhere!!

I could hear this narrative through every creak and groan of my joints. The pull of each muscle and the ever increasing feeling of trying to walk through a vat of Vaseline after approximately 25 shots. That pain I was just about coping with spiked to a point where every nerve ending in my body bristled and screamed. But I tried not to show it. Just minutes from my rest on the bench I was sitting on a harbour wall. I had tried to look around a small flat museum with my family. But that was too much, so the harbour wall it was. 


I smiled and tried to enjoy the sunshine. The sun that was making me sweat buckets whilst the (apparently) refreshing breeze dumped buckets of ice across my agonised body. Outwardly I smiled whilst inwardly I writhed like a worm on a hook. Not ten yards further I was sat on another bench. Gran and I chatted whilst my husband took the kids to explore the exciting looking steps down to the sea. Covered in barnacles and going right down under the boardwalk the kids loved it, especially seeing the people who were catching crabs on a line. I sat in the sun. Missing the excitement on my little ones faces. Gran told me I should have used my wheelchair. She would have pushed me. I smiled and said I was ok.

The longest walk of all was to the entrance to the beach, past whizzing whirring fairground rides and gaggles of laughing holidaymakers. The kids forged ahead with my husband as me and Gran brought up the rear. She saw me stumbling and dragging my feet, desperately catching myself as my knees went from under me on more times than I care to remember. The children didn’t see; but my older two knew, of that I’m sure. I confided in Gran I probably shouldn’t have come, and she asked if I’d like to leave. No came my answer. I couldn’t show my kids the golden sand and glistening water and deprive them of going to play. I’d be fine. 

Gran and I had a drink whilst my husband played in the sand with the kids. Again I had to lay down, meaning I couldn’t even see them frolicking on the sand. Soaking their clothes in the salty water and not caring one jot. People stared. One young boy was so brazen that he sat less than a foot away, staring intently until I had the audacity to say hello (in my least crazy person voice). I didn’t care. I don’t care. My family is what matters to me and if laying down on a sandy wall is what’s needed to remain present for them, then that’s what I’ll do. People can stare all they like. I do however draw the line at kids purposely kicking footballs at me, of which I told them so!! 


What felt like ten million years later my husband returned with our sopping wet brood. I was less than impressed as we had no change of clothing and no towels. I’d also been laid wearing my jacket and covered over with Gran’s. Though it was sunny, in my opinion it was certainly not the weather to be going for a, fully clothed, dip in the sea. Paddle, perhaps. Drenched to the waist like my eldest son, not so much. My husband disagreed. 

That was the last bit of my barely there patience done. Rather than argue in front of the children I headed back to the car, stopping only at the loos for a quick bag empty. (Though I may as well refer to it as a pee for the amount of liquid I had in there!) At least I’d been able to use the burst of adrenaline to get me back to the vehicle in one piece. Windows down and seat back, I slowly breathed in and out trying to focus on anything but the complete agony I was in and the faces of nosey passers by. Though faster than my journey down to the prom, my journey back had been a whole lot less controlled. It wouldn’t surprise me if people were under the impression I was just another drunk, rather than a mum just trying to push her ever failing body as far as she could. The kids got their ice creams as I pulled myself together. 

An agonising car ride later and I was once again home. As soon as I could I sloped off to bed, stretching flat my now completely broken body and telling my father about the day we had had at the coast. He told me I should get a lightweight scooter. Things would be so much easier! Minutes later my husband told me I should have cancelled. 

But I couldn’t do any of those things, cancel, wheelchair, scooter. 

To cancel would have let down Gran and the kids, who had all been looking forward to this treat. So why not use my wheelchair or a scooter? Because I’ve been doing better. I’m managing. I’m supposed to be building up my stamina. 

But, as I lie here broken and close to tears, I have to ask myself if that’s truly what I’m doing. Am I building myself up or breaking myself down? When I was taught to cope with my ill health it was all about being as active as possible whilst making sure to pace out every aspect of my life. Is sitting down at each point I cannot physically stand any longer pacing? Or giving up and not going altogether on bad days, is that pacing? Or, is pacing using aids such as a wheelchair or scooter in order to make the best of what energy and pain reserves I do have? Maybe then I’d have had it in me to make it onto the beach rather than just watching videos taken by my husband. 

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. 

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. 

Where’s my spoons?!

Where’s my spoons?!

Many people with disabilities which affect evergy levels have adopted the Spoon Theory as their mantra. Indeed when I first read it the words they struck a chord with me. So much so I posted them on social media and asked friends and family to take a look. I wanted them to better understand me. That may have been a mistake. You see, I’ve come to the conclusion that the Spoon Theory doesn’t fit my life. 

Firstly, for those not in the know I shall give a brief description. The Spoon Theory is a concept whereby energy is equated to spoons. Basically as a chronically ill person I would have a finite amount of spoons per day. Each activity I do would remove some spoons until eventually I had none left. The point of it is that we don’t have endless reserves of energy/spoons. 

This is very very true. In basic terms the Spoon Theory is an excellent way of describing life with a chronic condition. However I find I just can’t embrace it. 

One reason is on a given day I have no clue how many spoons I will have any given day. For me there is no set amount to wake up with. I cannot bank on having six or twelve or even one spoon. The theory states that going over your energy reserves on Monday, will take away from Tuesday. This is certainly true. But I can have a completely restfull day, and still have nothing in the tank for the next day. Until I open my eyes and take that first wakeful breath, I have no idea what kind of day it will be. Even then, I can never be sure. 


Often I wake in a morning and think ‘Yes! Today is a good day!’. Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change, sometimes it’s stress. Often I have no clue whatsoever what’s happened. 

On top of this. The amount of energy activities take changes on a day to day basis. I cannot plan my day around how much energy things will take from me. Because I do not know. A shower may be doable on Monday. On Wednesday it may feel like bricks are pummelling me rather than water. My joints may feel stiff and rusty. Everything could take ten times more energy. I cannot count on being able to do tomorrow what I managed to day. 

Finally there’s another complicating factor. Pain. Let me tell you now, you can have all the energy in the world, but if you feel like someone just drove a dumper truck over you you’re not going anywhere! Pain entwines through my entire body in a daily basis. I never know how tightly it will grip. On a good day I can hide it. On a bad day it consumes me. 

So yes. The Spoon Theory is fantastic. But unfortunately it gave people the wrong idea. They thought if I rested I could then plan activities. If I worked my day so I didn’t have more than one thing on, then I could do that one thing. They had the impression that I had some vestige of control. I do not. I try. I try not to let my health rule me. But at best, I’m flying by the seat of my pants through an ever changing roller coaster of pain and fatigue. At worst I’m being pulverised by a Hulk type monster with PMT. Either way, it’s a whole lot more complicated than simply rationing my Spoons. 
PS The original Spoon Theory can be found here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ 

Though I’ve come to realise it doesn’t fit me, it’s still worth a read!