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. 

Jaymee’s Battle.

Jaymee’s Battle.

Our story begins when Jaymee became a mother, at the age of twenty. Soon after she was diagnosed with Postnatal Depression, a fairly common problem that many mothers face. As is so often the case, Jaymee was given antidepressants and sent on her way. But Jaymee knew deep down something wasn’t right. Months passed, and she didn’t improve. Those months turned into years and still Jaymee was no better. During this time the doctors tried many different tablets, but none of them worked. The only thing Jaymee gained from the medication was a detachment from her feelings, a numbness to life.  This feeling (or lack of it) enveloped her, it became her new normal. Her coping mechanism to get through the endless days of feeling broken inside.


Around 2013 Jaymee got to the point where she lost herself completely, she had a complete mental breakdown. The medication she had been on had only delayed the inevitable. She describes herself as “high as a kite one minute, the next (she) was the lowest (she’d) ever been”. Jaymee was thrill seeking, and taking crazy risks, with no consideration for those around her. Yes, she admits she had fun at first, but there comes a point when the fun stops and all you’re left with is emptiness and regret. It’s not fun anymore when you’re constantly hurting those who love you. You’d think that being a mother would help put things into perspective, but alas it didn’t. She couldn’t see beyond her own selfish desires. Looking back it was a very dark time in her life, though at the time she didn’t realise.  

Jaymee says, “This is a place I don’t want to go back to.  It was awful. I hurt and blamed the ones who loved me, pushed away people who cared.”

Along the way Jaymee was unkind to herself as well as her family and friends. She had completely lost herself, to the point she wasn’t even Jaymee anymore. It felt as though her head just wouldn’t work how she needed it to. She was lost, adrift in a sea of confusion and extreme emotion. Eventually she snapped. Everything came crashing down and Jaymee could cope no longer. Desperate for help she did something “really stupid and regrettable”,  and though she wishes it had never come to that, she did finally get the attention of her doctors. After years of them just telling her it’s depression, here’s a tablet;  they finally took noticed and realised there may be something more going on. 

Jaymee was referred to a Psychological unit. Finally she had been guided onto a path, instead of wandering aimlessly lost through life. She remembers how the first thing they considered was Bipolar Disorder, but it wasn’t that. She remembers how it took a whole year of doctors, psychologists and psychiatrists analysing her to finally get an answer. A year of being watched, evaluated, pried into. A year of waiting, stressing and wondering. It was not easy to go through, but it was worth it. Because eventually Jaymee got her diagnosis. Her label. 

Jaymee has Borderline Personality Disorder. The symptoms of this are wide ranging and can easily be mistaken for other things, such as depression. But BPD is completely different, and as such will not respond well to the tablets Jaymee had previously tried. Mind describes Personality Disorders as being a type of mental health problem where your attitudes, beliefs and behaviours cause you longstanding problems in your life.

Being diagnosed didn’t make all Jaymees problems go away, but it did help her to understand herself a lot better, to start being kinder to herself. Her diagnosis meant she was able to explain to the people she loved why she behaves in the way she does. It helped her learn to accept herself again, and take some control back. She was finally put on medication that had been properly tailored to her needs. Medication that actually helped. But even more importantly she was given a team of people to support her, and guide her through learning to live with her new label. She had counselling and went on courses to help her manage her emotions.

The journey was just starting, and it was to be a long and difficult one. Getting a diagnosis, a label on your back, does not automatically make things easy. There were many bumps in the road, and Jaymee almost gave up on herself so many times. But she didn’t, she caught hard and she’s still here today, stronger than ever before. 

Last year Jaymees life took another turn, tragedy struck and she lost her Father. The man she had worshipped and adored all her life. Such a cataclysmic event is enough for anyone to fall off their path in life, let alone someone with mental illness. But instead Jaymee did the opposite, she grasped her life in both hands and took back control entirely. Starting by coming off her medication. Now, Jaymee admits this was probably a rash decision, and it’s certainly not something she would recommend to others, but she knew it was something she needed to do. Jaymee needed to grieve for her father, to work through her pain and her loss, she knew this wouldn’t be possible for her on medication designed to dampen down extremes of emotion. Her doctors disapproved, but in the end it was her choice, not theirs. But she didn’t turn her back on all the things she had learned since her diagnosis. Jaymee took those skills and used them to get through life, facing one day at a time.

A year on and Jaymee hasn’t touched her medication again, and she’s feeling better than she has done in a long time. Finally she feels as though she’s found a part of herself again. Things are not easy, she still struggles from time to time, a diagnosis of BPD doesn’t just go away if you choose to stop taking your medication. But Jaymee is learning to live with it, with pride and a new sense of self worth. This has been one of the hardest battles she is ever likely to face, and she’s done it! Eight years, eight years was how long it took to get a diagnosis. Jaymee will never get those years of her life back, those years that should have been spent enjoying motherhood but instead were full of battles. Battles with herself, doctors, and those she loved. She knew in her heart all those years ago that Postnatal Depression didn’t fit with the way she was feeling. Jaymee knew the doctors weren’t doing all they could for her, and she often wonders how her life would have turned out if she had just shouted a little louder, pushed a little harder. 

If you are struggling with mental or emotional problems Jaymee has this message. “Please , please, don’t suffer in silence, seek help if you need it and keep going until you’re listened to. Mental Illness is not a weakness, from mine I found my strength”

Jaymee bravely decided to share her story on Facebook recently. Had she not many of her friends, myself included, would never have known of the struggles she’s faced. Mental Illness is perhaps one of the truest forms of invisible illness their is.  So easily hidden, and so often seen as taboo, people can be left helplessly floundering, battling their demons alone, for years on end. Jaymee says that if even one person can be helped by reading her story, then it was worth it to share. To Jaymee, I say thank you. Thank you for letting us in, and for trying to help those in need. I too hope your story helps others, I believe it will. 


If you are struggling with Mental Illness advice can be found at Mind.org. This post was adapted from Jaymees original Facebook post.

My Time. 

My Time. 

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

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

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

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

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

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

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! 

A sinking ship. 

Since having my baby in October my treatment seems to have stalled. Well, I hope it’s just stalled. Ground to a devastating halt may be a more accurate description. By now I was supposed to be back on my mess and well on the way to being ‘better’, or as close as I get. Instead I’m confined to the house, and very often to my bed. I feel like a completely useless lump. A huge burden on my husband and kids. Let me tell you, it’s not a good feeling!

The annoying thing is, I could be on the road to health. I know who I need to see and what I need them to do. There is only one problem. My GP. 

In general I’m very supportive of the medical profession. But this woman has me pulling my hair out. Quite literally. Mainly because she believes that I should be referred to my specialists one at a time. This is ridiculous. I have a multisystemic illness, it affects various different parts of my body simultaneously. To this end I need to see various different doctors for my care, including but not limited to cardiologist, neurologist, gastroenterologist, rheumatologist, gynaecologist and pain clinic. These doctors need to liaise with each other in order that treatments they give me don’t clash and so I can get the best healthcare plan. 

But no. Not according to my GP. She believes that anything above two referrals is too many. That my problems can wait. She thinks I should let one doctor ‘sort me out’ before moving on to the next. But it doesn’t work like that. Each problem affects the other. They are all intrinsically linked, entwined through me like strangle weed throughout my body.

Imagine if you will a ship. In its hull are ten holes. The navigation system is on the blink and there’s a fire in the engine room. The ship is lost at sea. You could look at the issues one at a time. The holes first? One by one. But then the blaze has taken hold. So tackle that first? Now the boat is sinking. Surely the navigation system is last priority? But your boat has drifted so far you are in dangerous waters with not enough fuel to get home. Each problem is equal to the last. What the boat really needs is a team of people, each fighting to keep it afloat. Each working independently towards a shared goal of retrieving the situation. 

I am that ship, and I’m trying to plug holes and put out fires as they come along. But I am one woman. I need my team, because right now I’m sinking. All I can hope is that I can make my GP listen and stop blocking me. 

  

The search continues.. 

It has been said that I’m just constantly looking for new diagnosis. That I want to be ‘more ill’. I suppose, in a way, this is partially true. I am searching for another diagnosis. Maybe more than one. In fact, I’m devoting a hell of a lot of my life to it. But I don’t want to be more ill. Why would anyone want to be more ill??

You see, I just don’t feel my search is over. From the very beginning I have beaten my own path when it comes to my healthcare. Since being a child I knew there was something drastically wrong, but I was always met with disdain. Many doctors simply felt I was a hypochondriac. Even when I started collapsing I was told, to my face, I’d done it for attention. (Erm, no, floors are hard and painful. That is not how I would get attention thank you very much.) So getting a diagnosis was a huge relief for me. Getting several came as a shock. 

You’d think I’d be happy with that. For a few years I was. But then I learned about my conditions. I realised that my body and the way it works does not properly fit the conditions I have. The medications I’ve been given do not control symptoms as they should. Many symptoms I suffer shouldn’t even be there. This does not sit well with me. The final straw has come when one of my diagnosis has been disproven altogether. So many symptoms cannot be explained at all. If they can’t be explained, how can they be treated?? 

So the search resumes. 

Here’s the thing though. I’m not a hypochondriac. Nor am I a martyr to my illness. I do not want to prove myself more ill, nor be more disabled. But giving up on the search is like admitting this is it. This is as good as it gets. My quality of life now is the best it will be. 

I’m not willing to do that yet. I want to try everything. Check every possibility and see if there is ANYTHING that can improve my health. That can make me a better mother and wife. I’ll go through the horrible tests. I’ll trial the medications. I’ll put up with the side effects. Because I hope that one of the tests will find the last missing piece of my puzzle. I believe that there’s still something, or someone out there that can help me improve. Even if it’s just 5%. I’ll take that 5% and I’ll use it on my family. 

If not? If I’m wrong? Well, at least I’ll know I tried.