The Truth Behind the Smile. 

The Truth Behind the Smile. 

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

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


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

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

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

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

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

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

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

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

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

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

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

I see you. 

I see you. 

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


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


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

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

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

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

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

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. 

Sonia’s Story….

Sonia’s Story….

Our story begins on September 1st 2012. The day started much like any other, with Sonia heading off to work at a well known frozen food store. Sonia was a busy lady, holding down a hectic job and being mum to her beautiful children. Days whizzed by in a blur of work, cooking, cleaning, love and laughter. But on that day, as Sonia took off her shoes after work, something halted her in her tracks. 

Sonia enjoying her birthday with her workmates.

On the side of her foot was a lump. Something she hadn’t noticed before, and was concerned enough to visit her doctor about. An ultrasound scan revealed the lump to be some form of tumour, that originated at Sonia’s ankle. When within a week the tumour more than tripled in size the doctor decided it best to have it removed. Surgery was scheduled. It was to be a simple routine procedure. The tumour was a none cancerous ganglion and there was nothing to worry about. 

Little did Sonia know that this procedure would change her life so completely. 

September 17th, surgery day. As soon as the anaesthetic wore off Sonia knew something was amiss. 

My foot was on fire, and yet it was as cold as ice! – Sonia

She needed to get the bandages off, she couldn’t stand the pain a second longer! Almost immediately her foot swelled to such and extent that the brand new stitches burst, leaving her with a gruesome open wound! Of course she headed back to the doctors for the first of many visits. The wound was washed and cared for, helped to heal. But still the pain persisted. Nobody knew what was wrong. Doctors were left scratching their heads. Within a month Sonia was unable to move her toes at all from the unexplained pain. 

Two weeks and three days after surgery Sonia’s still swollen foot and open wound was still nowhere near healed.

Fast forward eight months and Sonia was finally given some answers after seeking help from a specialist. It was CRPS – Complex Regional Pain Syndrome. Not only that, but she had CRPS Type 2. The type that, unlike type 1, does not go into remission. 

Complex Regional Pain Syndrome Type 2 (CRPS Type 2) is a severely painful response to a peripheral nerve injury. CRPS Type 2 is characterized by severe, burning pain affecting a specific area as a result of the nerve injury. RSDguide.com

Not one to take things lying down Sonia immediately hit the Internet. Desperately trying to find information about this new hurdle that had blocked her path in life. Surely there was something she could do?  But everything she could find described Type 1. What little there was about the type she was suffering was sparse and often ill informed. So, as the doctors prescribed her with drug after drug to try and help her symptoms, Sonia began to write. She wrote page after page of diaries. Her symptoms, her moods, her feelings. Anything and everything in the hope it could one day help someone. 

The CRPS caused Sonia to feel she had completely lost who she once was. Known as the ‘Suicide disease’; the pain often left her wishing she hadn’t woken up that morning. Life just became too much and it wasn’t long before Sonia was unable to work. Socialising also went out the window, as did just about every aspect of the life she once new. The only constant now being the love of her beautiful children and never ending crippling pain. 

Over seven months after surgery and the swelling is glaringly apparent. This photo was taken after four hours of having her foot raised.

Sonia’s foot swelled to almost unbelievable sizes on a daily, if not hourly basis. Taking an age to reduce back in size, never really resembling normal. It burns constantly whilst at the same time feeling freezing cold. Remember the Ice Bucket Challenge? Imagine putting your foot inside that bucket of ice until it was so cold you had freezer burn. Imagine never being able to take it out again. You might just be getting close to the horror Sonia goes through on a daily basis with CRPS. 

It’s been four years since she has been able to bathe or maintain her foot herself. Even bedclothes touching it is excruciating. A simple toenail trim involves a trip to hospital and anaesthetic, otherwise it’s just too painful. Information online indicates that CRPS type 2 doesn’t spread, but that’s not the case. Sonia now has pain in her left foot, knee and hip. It’s also spread to her threat, right ear and right eye. She has been bedbound for over three years due to the severity of her symptoms. 

Many doctors say that scripture tells them it doesn’t spread. Sorry, but myself and hundreds of other CRPS Survivors can prove different. Yes we call ourselves survivors because CRPS is also known as “The Suicide Disease”. And I can understand why! – Sonia 

By July 2013 the constant battle with her body had become too much for Sonia. Though she loved her children desperately she felt she wasn’t strong enough to go on any longer. Hiding away her Morphine and CoCodamol tablets, she planned to take her life on July 13th. 

But once again, life has other plans for Sonia. 

On July 11th she received a call from her eldest daughter. She was at an antenatal class that day, pregnant with her first child. Sonia thought she was calling to talk about the morning sickness that had dogged her throughout the pregnancy, but today’s call was about something altogether more urgent. Her daughter was about to be rushed in for an emergency C section. The pregnancy had taken a dramatic turn and it was operate now or risk life of both mum and baby! 

Luckily, everything went well and nine weeks early Sonia’s beautiful granddaughter entered into the world. Named Scarlett, she was absolutely perfect! Not only that, but she was a wonderful reason to keep fighting, a reason to live! Sonia believes that Scarlett arrived early to save her; and seeing their close bond, it’s not hard to believe that’s the case. 

Baby Scarlett looking beautiful.

Sonia threw herself into making clothes for her tiny premature granddaughter, soon realising she had a clear talent. Soon Scarlett had plenty to kit her out, so Sonia went on to make things for other tiny babies. Always thinking of others, she had noted a clear lack of clothes for premature babies on the market, and what there was was very expensive. Not ideal for families who are likely already spending a lot of money to be able to spend time with a baby in hospital. 

She set up a Facebook page, and things just grew from there! Eventually Sonia branched out, learning to make jewellery when she came into some jewellery making kit unexpectedly. She loved it, and better still so did her youngest daughter! For a mum who had lost so much time with her children, it was great to find a passion they could enjoy together. Another page was born S & J Crafting Creations, where Sonia and her daughter could sell their wares. 

Whilst their page was relatively new Sonia saw an advert for Conscious Crafties a sales platform for disabled people and their carers. Immediately she got in touch and just like that she became the first EVER crafty! Within a week of joining she became friends with the Founder, Karen Thomas, and has been of invaluable help to her ever since. 

A selection of products in Sonia’s shop.

That was a year ago, and Sonia cannot believe how far she has come. Not only does she have her own business, but she has another purpose! One more reason to live! Sonia’s business is flourishing. Her motto is ‘Giving the gift of a smile!’ That’s exactly what she aims to do. 

Right now only Sonia’s arms and hands that work. So she crafts all day every day whilst she still can, she will not be beaten nor will she give up! Sonia is a fighter in the truest sense of the word, and if I could have one wish this Christmas it would be to allow her to continue with her passion for as long as she could wish for. She deserves it!

To visit Sonia’s shop please CLICK HERE.

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!!

My Gift. 

My Gift. 

Recently I’ve been going through a really difficult time. A change in my medications has gone incredibly wrong, meaning I’ve been flaring in every sense of the word. My pain levels have skyrocketed, leaving my meds completely unable to make any dent in them. I’m having hot and cold sweats, shakes, breathlessness and tremors. My racing heart is causing me to be dizzy and trip over my words, and my feet! On top of all that I can’t sleep at night, even though a constant exhaustion sits over me like a suffocating toxic fog. In short it’s been hell. Complete hell. 

My usual look at the moment.
This morning I woke up feeling much the same as I have every other day. I’d only had five hours of interrupted, restless sleep. I was exhausted and in pain. But, I was determined to get out of the house. As I laid in bed and waited for my meds to kick in, something amazing happened. They actually kicked in! For the first time in a long time the haze of exhaustion began to lift and my pain eased just enough to move around without visibly wincing! I couldn’t believe it! 

Of course I did what anyone would do. I made the most of it! In the car we hopped, and down to the park we went. This time, I didn’t sit on a bench and watch as my husband played with the kids. I got up, and I joined in! Today it was me taking our baby on the rides. It was me playing along. It was me being ‘fun mum’. Yes it hurt. Yes it took my breath away. Yes I’m now in bed feeling like I’ve been run over by an articulated lorry. But it was so so worth it!! It’s amazing the difference a few hours out (if that) can make to your mental state. 

Soaking up the sun and charging my batteries for fun!
Ziplining , slow and low! (I may have kinda fallen off.. but I was scraping along the floor anyway so it was fine!)
Little man loved the swings!
Me and both my boys on the slide.

Technically today I did the wrong thing. Technically I should have paced myself. Taken it steady. Reserved some energy for tomorrow. But what’s the point? What’s the point in saving myself, when I have so many overlapping conditions that tomorrow I can still wake up unable to function? I cannot live like that. I cannot and I will not. These last few months have been an exhausting whirlwind of pain and symptoms that’s left me feeling a shadow of myself. Yesterday I was low. I was the lowest I’ve been in a while, crying hysterically at the doctors receptionist when they couldn’t get me an appointment. Sobbing in the bathroom at 2am as I tried to shower away my searing pain. I needed a day like today. Today was my body’s gift to me, I’d be damned if I was going to waste it! 

As for tomorrow? Well, if I’m out for the count (which I likely would have been anyway) then at least I have my wonderful few hours at the park today to look back on. To me, that’s worth it.