*WARNING!! This blog post contains a graphic image of violence and racism which is likely to be upsetting to see. But I have had to include it for the integrity of the piece.
Today I have been very ill, struck down with a serious bout of vomiting that has left me incredibly dehydrated and flaring in every sense of the word. Writing a blog post was hands down THE last thing I thought I would be doing tonight. But sometimes, life has other ideas..
Recently I’ve been paying a lot of attention to the goings on in America. As someone who has a lot of American, and Jewish, friends it’s a subject I feel to be of great importance. To be honest, even if I knew nobody from the US I’d still feel the same. Why? Because in this day of social media, internet stardom and cameras recording everything, no one country stands alone anymore. Everything that happens in America filters across to us in Europe. It affects us. It influences us.
If people in America are able to get away with racism and hate speech, then suddenly it becomes ok in the eyes of our children. It is my belief, that thanks to the vast and intricate social network we’ve created, that all the ugliness spilling out onto the streets of America will soon be occurring here in the UK.
A huge part of that social network is Facebook. I defy anyone in the modern world not to have at least heard of Facebook. Even my elderly Father knows about it, whilst not partaking himself. Mark Zuckerberg has become one of the richest and most powerful men in the world, all because of his premise of bringing people closer. But with that power comes responsibility. A responsibility to ensure that people aren’t using Facebook to promote hate and violence. In particular I’m referring to racial violence.
That’s where the community standards came about…
This brings me to the main point of my blog. Now, I consider myself as a fairly open minded type of gal. My ethos is very much ‘live and let live’. As such, it takes a lot for me to report something to Facebook for a review.
But today, I saw something which prompted me to do just that. The image was posted in a group where videos of spots being popped are shared. (Yes I’m one of THOSE people). It graphically shows a white Neo Nazi (complete with swastika emblazoned on his chest) about to violently stomp on the head of a black person. Possibly a child. Along with this is the words ‘You’ve been popping blackheads all wrong’ and laughing emojis. It truly is a violent and disgusting image, and I’m only sharing it now to prove I’m not making this up.
Obviously I was shocked and appalled. So I immediately reported the image to Facebook, rather than commenting and giving the original poster the attention they had hoped for. Then I tried to put this putrid piece of diatribe out of my mind as I spent the remainder of the evening drifting in and out of sleep and attempting not to vomit.
Some hours later I received the notification that my report had been reviewed. Intrigued I clicked on the banner…
‘It (the picture) doesn’t go against any of our community standards’. Seriously??!! How doesn’t it??!! Have I read the wrong ones?? Clearly this image is glorifying violence, racist violence. That’s a direct violation of not one but TWO Facebook community standards!!
Now, I could have taken the easy option and simply blocked the original poster, as Facebook so kindly suggests. But what will that achieve? How will that help the situation?? By standing by and doing nothing we make these actions acceptable. Now is the time to take each and every opportunity we have to stand up and say NO! This new world full of hatred we live in is not ‘just one of those things’. These posts are not just ‘harmless talk’. THIS IS NOT OK!!
So, in response to the lack of action from Facebook I chose to write this blog. I chose to push myself to use whatever voice I have online, and shout from the rooftops. I shout to you Mark Zuckerberg! I ask you, what is the point in having community standards if they are not upheld? What kind of world do you want your children to grow up in?? And just who is checking these standards???
I know for a fact that the people employed to check these reports do not have to submit anything more than what you would for a general job position. My source tells me that you don’t have to give any kind of background check whatsoever. So, what’s to stop the people ‘policing’ Facebook allowing it to become a racist and hateful place?? Nothing it seems.
I will not stand back and watch as these images cross my path, doing nothing to try to change things. To ignore the situation our whole world, not just America, is in right now is to be as bad as those perpetuating things. So Mark Zuckerberg, if you see this… what are you going to do about it???
Below is an email I sent this morning to a specialist I saw last year. It’s not professional. It’s not the right way to go about things. But it’s real. It’s my life. It’s the level of desperate I’m now at. I’m not sharing this for sympathy. I’m sharing it to highlight the thousands of people out there who are just like me, living with these problems. Sharing this isn’t easy. It’s hard not to be embarrassed and disgusted with myself. These are issues often kept behind closed doors. But I’m opening them. I refused to be ashamed. It’s not my fault I have to live like this.
If someone told you they had a prolapse, would you think it a big deal? Would you expect it to seep into every aspect of their lives? Would you realise that it could be on their mind of every second of every minute of every day? Probably not. Well… maybe this may open your eyes to what it’s really like…
Hello Dr ##1##,
I’m sorry to contact you directly, but I’m unsure what to do. I feel I have to take things into my own hands.
I have had my surgery in October with Dr ##2##. She addressed the cystocele and prolapsed uterus by performing a vaginal hysterectomy and anterior prolapse repair. No mesh.
However she refused to touch my rectocele, which continues to get worse and worse. I now cannot pass wind without pressing on my perineum, or bulge within my vagina. The only time I pass any stool is when my laxatives cause me to have violent and painful loose stool. However some of this always collects in the pockets of bowel and quickly hardens and blocks it. Mostly I have to manually remove my stool. This involves putting a thumb inside my vagina and two fingers in a v around my anus (which when I need a motion bulges out to varying degrees).
I manipulate the whole area in order to push the stool out, as my lower section of bowel doesn’t push at all. Often times I then have to insert a digit into my back passage to try and help the process along. Inside is a large cavern. It feels almost flying saucer shaped. (Sorry that’s all I could think of to describe it) I have to sweep my finger around to collect stool and mucus. Above this area it seems to become tighter again, but still won’t push, though the muscles around do clench. Since my surgery however there also seems to be a large grissly bulge protruding into that upper area.
Unless the laxatives cause me to have severe cramping I very rarely can tell if I need to pass a motion anymore. The only things that alert me are bloating, a heavy feeling, and being unable to urinate. This also happens with the large amounts of trapped wind I get. You don’t realise how much you must naturally pass throughout the day until you can’t do it anymore and it’s all stuck. Let me tell you, there’s a lot! I could power a wind farm. The only way I can tell which it is is to feel whether my bulge is full of gas or stool. Then get it out.
Every single time I go to the toilet is an ordeal. I’m left feeling in pain, bruised and without any dignity. Because of my POTS and EDS the positions I get myself in often cause my joints to hurt and sublux. My legs go completely numb and my heart fluctuates. I also get hot sweats and dizziness. All this combined means my husband often has no choice but to supervise me on the toilet and help me back to bed. I can be on there an hour or more at a time, and bed is always where I end up. It takes so much out of me. Plus, I never go just once. Often there’s at least three trips to actually get the entire stool out.
I have ended up in tears, wishing for an ostomy over this life. How crazy is that? I know it’s crazy. But I just cannot go on like this.
The only thing that Dr ##3## can think of is regular irrigation. Possibly even weekly, from now until kingdom come, to get my bowel cleared and hope that in between I feel ok. He said he doesn’t believe I have crohns. There’s no sign of it on any recent test. But he told me, if it’s IBS it’s the strangest and most aggressive type he’s ever seen.
Please will you help me. Dr ##2## was lovely. But you are the best in colorectal surgery. I know I’m a complicated case. I followed your instructions. I saw a different doctor. I did everything you told me to. Now, months down the line, the problem I came in with is just getting worse and worse. You wrote to me saying if I was still having problems to get back in touch. Whilst writing this letter I got a call back from a Secratary. She told me my GP must write in and I have to wait all over again. I feel like I’ve been waiting forever. I feel like the main issue I need help with was pushed aside and I’m just left here to suffer. Now to hear I’m starting from scratch is devastating.
My in laws have booked to take us to Disney in early 2018. They’ve already put it back two years because of my health. They can’t move it again. How do I tell my kids I can’t go because I can’t go to the toilet like a human being and it’s ruining my life? I struggle to even wear clothes due to the extreme bloating. How do I tell them that after all the waiting and the surgery I am right to the back of the pack again?
I know I’m just another face in a sea of patients begging for your help. But I took your advice. Please, now will you try to help me? I’m not too proud to beg.
If you got to the end of this letter I appreciate it. Most doctors would bin it immediately. I really am sorry for contacting you directly. But desperate times and all that. Also, Dr ##2## really was lovely and treat me very well. She just hasn’t fixed the thing that most impacts my life.
Any advice you have would be greatly appreciated.
Please. If you know of anyone with these problems, don’t make fun or make light. Be aware of the fact that these issues can make you feel sub human and worthless. If, like me, you are going through this. Don’t just sit back and wait in line. Dig your heels in and kick up a fuss. Push hard for the treatment you need!!
If by some miracle any Doctors happen to read this blog. Well, to you I ask this. Please try to understand that prolapse can impact a persons entire life. Many people in support groups Im in are teetering on the edge of a complete breakdown. Treat us with respect and care. But also with a sense of urgency. The longer we live like this, the less human we feel.
This time three years ago was my last New Years out on the town. A teeny size eight I slipped on my favourite dress and sky scraper heels. My eyes were smoky and my hair was done with a swoosh of product through the funky style I was rocking at the time. Looking at photos I can honestly say I don’t recognise myself. I looked a million dollars, and a million miles from the way I look today.
I remember that night so clearly. I remember people complimenting me. Women liked my dress, my hair, my heels. Men buoyed with drink liked the way my dress sat just below the crease of my ass, showing off the only pair of tights I had on hand at short notice of a night out. You know the type? They look like stockings… I remember the smiles, the selfies and the shots. Kissing a stranger at midnight. Singing along to the music.
Fast forward to tonight and my New Year was spent very differently. Tonight I had a take out for my tea. I showered and then I watched a film in bed. Sounds boring right?? Wrong. For me, it was absolutely perfect.
To understand why, you might need to look a little deeper into my New Year three years ago. My night out was last minute because a friend convinced me to leave my doldrums and head to town. She was worried about me being alone. When I say alone, I don’t just mean for New Year. I mean totally and utterly. I was estranged from my entire biological family. The person who had been stringing me along for the entire year had also chosen this time to cut me loose. My daughter was staying at her dads and I had little in the way of close friendships. Well, except for one. One who convinced me to get out and feel better. My body was a size eight because the intense stress I was under had caused a flare up of a condition which makes my body completely unable to process food. Weight was dropping off me at an alarming rate. My funky hair? I had that done after a close family member passed away. I don’t know why. I just needed to do something, and chopping all my hair off was it.
So I went. I slapped on the makeup, painted on my smile and toddled off up to town.
I remember that night so clearly because I was in a place I’d been frequenting for over ten years. Surrounded by faces I recognised and many I knew well. I was smiling and singing and playing along. But I had never ever felt more alone and miserable in my life. Never.
Just after midnight I had a lift pick me up and fetch me home. I took one last ‘happy’ picture before bed, then I cried myself to sleep. My makeup staining the pillow with a blurry reminder of my pathetic (to me) existence.
The next day, as I languished in bed watching the hours tick by, I decided I had to make some changes. 2013, and the years leading up to it, had seriously brought me to my knees. Now was time to get back up.
I decided to start putting myself first, and saying no to people. If they only wanted me around because of what I could do for them then why did I want them in my life? The same went for men. No more men who thought they were doing me a favour by spending time with me. No more men who treat me badly. No more being used. I would rather be single and happy than in love with the wrong person.
For the first time ever, I stuck to my New Years resolutions. I fought hard for myself. I put myself first. I ‘found’ myself, and my smile, again. Not long after I found my husband. The man who had been right under my nose all along. I always knew he’d treat me well, and that we had a connection; but I pushed him away. I see now that it was because I was afraid. Afraid of falling too hard and getting hurt. Afraid that he’d realise he deserved better. Afraid of losing him before we even tried.
But try we did, in late February of 2014 we started dating. At Easter we were engaged. Our wedding was September first. Some thought it was too fast, but we knew it was right. I knew it was right. Why wait?
So here I am. In my bed. Writing this blog. On one of the biggest party nights of the year. Gone is the size eight body and funky hairdo. Gone are the sky high heels and skimpy dresses. The makeup very rarely adorns my face. But what I have instead is so much better.
I have peace, in my life and in myself. I have a daughter with a step daddy who adores her. A step son whom I feel lucky to have in my life every single day. My sweet baby boy, who lights up the room with his smile. I have my husband, my partner, my best friend and my soulmate all rolled into one. We get on each other’s nerves, we argue and we grump. But we tell each other we love each other more times than I can count in a day. We are there for each other through thick and thin. We love each other. I have a love in my life. The love of my life. I have made and kept a select few real friends who treat me well and I endeavour to do the same for them. Finally, possibly most surprising of all to the me of 2013, I have worked hard on rebuilding a relationship with someone very important to me. They have worked hard too and we seem to be doing great. That too makes me happy.
So you can keep your parties, your nights out, your drink and dance. That’s not what matters. It might entertain a person, but ultimately happiness isn’t what you find in a bar. Happiness is being content in your own skin. Happiness is love. Be it for yourself, or for others. Happiness always starts with love.
So, if you have one New Years resolution that you plan on keeping, let it be to love yourself. Because if you love yourself, others really will follow. The right ones will remain even during the times that love for yourself is a little bit lost, and they’ll love you that little bit extra.
HAPPY NEW YEAR EVERYONE!!
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.
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.
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.
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.
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.
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!
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.
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.
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!
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’s a video on Facebook at the moment. An advert about the safety, or lack of, of mobile phones when driving. A video about a dad, and a young boy. These videos always hit a nerve with me, as a mother of young children. But today more than ever the message hit home.
Why? Because yesterday that could have been me. Yesterday I was driving down the road when a young girl, maybe two years old, dashed out in front of the car. In front of my car.
I was turning a bend and about to mount a raised zebra crossing. The kids were chatting merrily in the back and me and Gran were looking forward to an afternoon in Filey. Then my blood ran cold. At the side of the road was a group of children, all varying ages. They were next to the crossing but most had their backs to the road. Still, I’d noted them as I turned the corner. I’d kept them in the corner of my eye as I continued up the road. Thank God I did. Almost at the very second my front bumper reached the edge of the crossing the youngest girl darted out and into the road. I slammed on the brakes, but lost in front of my bonnet I had no clue if I’d hit her.
Silence. No screams. No tears. The rest of the children just stared white faced at the spot in front of my car. A girl at the back of the group sobbed openly, but no noise came. Had I stopped? Had I made it?! I didn’t know. Gran didn’t know. The little girl was too tiny to see.
I wound down the window and asked. Did I hit her?! Is she ok?! My voice seemed to startle the group into action. Some yelled at each other about who should have been watching her. Who was meant to hold her hand. The eldest scooped up the shocked little lady and carried her to the pavement, telling me she was ok. Anpther child, the sobbing girl, just kept repeating ‘Thankyou, thankyou, thankyou so so much.’Over and over again. My car must have been millimetres from that little girl. Millimetres from snuffing out her tiny life. Perhaps it even brushed those bouncy golden curls that were now swaying in the wind. I asked if they needed to cross, intending to watch them over the road. No. I’d been right, they had no intention of crossing. But that doesn’t matter with little ones about. A ball, a bird, anything can take their attention and have them darting into harms way.
There was nothing more that could be done; so I took a deep breath, calmed my heart and set off. My kids reeling at what had almost just been a tragedy. I looked in the rear view mirror and noted the eldest girl still carrying who I could only assume was possibly her little sister. I hoped she carried her a the way to their destination. I hope they all would remember that bear miss and know how important it is to keep hold of her hand and stay vigilant near roads. I hope they’ve told their parents who may decide to supervise them in future.
But mostly I hope I never forget. I hope I never forget that flash of terror as the girl with golden curls bounded out in front of my car. That fear right down to my very soul as I waited to find out if she was ok. The feeling of my breath caught in my chest as I waited for the world to start turning again. I hope I never forget so that no matter what happens, I’m vigilant and always ready to stop in time.
I have a prolapse. In fact, I have several. I’m what’s known as a POP patient. I’ve been tested and checked and I know the extent. I know that all my insides are basically clamouring against each other to become outsides. I know which bits are ‘winning’ that battle. I know that I cannot pass a motion, or even wind, without some form of manipulation. I know that I have hemorrhoids and I get a full mucosal prolapse when I even attempt a number two. I know that just trying to irinate is like trying to wring out a wet rag whilst wearing boxing gloves. I know that I bulge and balloon and I stretch and strain. I know my episiotomy scar splits and I bleed. I know that I’m sore and I feel smelly. I know that when I menstruate it’s all caught up in a mess of bulges and gross. I know that I don’t feel like a woman anymore, or a person, and most definitely not a sexual being.
Of all my ailments this has probably knocked me down the most. It’s dragged at my confidence in the same way it constantly drags down on my abdomen. Each appointment has involved examinations and tests in my most intimate of areas. Many of those with a male doctor who made me feel guilty and selfish and like a bad mother because I am desperate for surgery to help me. All because he was afraid to perform it and wanted to put me off. I’ve been poked and prodded and made to spread my legs. I’ve had gel inserted inside me and been made to push it out with a gallery of technicians watching me. I’ve cried and wiped my tears then cried again.
Sex has become a taboo word in my relationship. How do you have sex when you are constantly uncomfortable? How do you feel remotely sexy when your own body disgusts you? I recoil and tense up if there’s the merest hint of an advance from my husband. To me that area is no longer sexual. It is not pleasure. That area brings pain and misery to my life. It brings degradation and embarrassment. That area is separate from me and all of me at the same time. I can honestly say I hate that part of my body.
Last month I saw another surgeon. My final hope. A woman. A woman who had kind eyes and an understanding air about her. Again the same questions were asked and the same examinations done. Again the tears flowed. But this appointment had a different outcome. Instead of a hard no, I was given a yes. A promise of surgery. But not just one. No, my life is never that simple. For me it will be several. Probably a lifetime of repeat fixes thanks to my genetic condition. But she understood my pain and could see that I cannot continue this way. Feeling less than nothing. Hating myself because of something I have no control over. Something I know I shouldn’t hate myself for. Walking out I was relieved, I was happy, I was excited. But over and above all that I was terrified.
I’ve never had major surgery before, I never really imagined I would have. Especially with the health issues I have. The words of the previous doctor rang in my ears. How recovery would be long and gruelling and I’m taking myself away from my kids. The surgery is looming closer and if I’m honest I’ve almost been talking myself out of it these last few weeks. Fear of going under the knife is almost stronger than the horror of living as this leaky, painful mess.
But not quite. Because every time I sit down and wince, I look to the surgery. Every time I feel the aching pull in my abdomen, I look to the surgery. Every time I can’t go to the toilet or pass wind, I look to the surgery. Every time I leak, I look to the surgery. And tonight, when I sat on the loo and somehow managed to urinate down the back of my ankle; instead of falling apart, I looked to the surgery.
Because I will have it. I will get through it and I will feel like me again. No matter how difficult the recovery. Because I’m a fighter and I can do this. Talking about my prolapse can be both difficult and embarrassing. But from what I’ve learned there are many women out there living a life similar to mine. Though I cannot say I’m proud of having Pelvic Organ Prolapse, I’m determined not to be embarrassed or ashamed. This post was a hard one to write and share, but worth it. I hope to show women they are not alone and to help #breakthetaboo surrounding gynaecological issues.