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!!

Today is a write off…

Today was very much ‘one of those days’. Last week was a busy week, and it’s most definitely caught up with me. I had no choice but to push on and butt heads with my conditions, and now I’m paying the price. Notice how I said push on, not push through? That’s because to me, pushing through is impossible. I can never push through. I have several conditions, and they will never ever be through with me. One of my pet hates is when people post in support groups about how they’re terribly ill, but they push through and so should we! Don’t get me wrong, I’m happy that they can. But they don’t seem to realise that there can come a stage when pushing through is just not possible. Pushing through morphs into something new, something harder. It becomes pushing against ever encroaching walls that are ready to push the life right out of you. Like a super hero in a cheesy eighties film, where the walls are closing in. Only much less glamorous. Last week I was lucky. I managed to get done what I needed to. But there’s many times when that’s just not possible. 

This being one of the days I was beaten, ironically whilst wearing my Wonder Woman nightie

But I digress. Back to today. Today was one of those days. The days where my health not only beats me physically, but mentally and emotionally too. I was stuck at the bottom of a pit of exhaustion and there was no way I could escape. The energy had sapped out of each and every part of my body, leaving me struggling to function. Worse than that though, I was drained of any emotional stamina I may possess. 

Usually on a bad day I try to fill my time blogging, or chatting with friends online. Today I did neither. I sunk within myself and wallowed in my hole. Instead of having a little cry and feeling better, I sunk into a maudlin limbo. Yet I had no reason to feel sad. This isn’t the first bad day I have had. They don’t normally leave me a weeping mess. Today however. Today did. Randomly and without notice I would find myself overwhelmed by sadness, tears streaming down my face. To the point I waited hours to write this blog as I couldn’t face the idea of crying yet again. The tears though, had no substance. For I had no reason to be sad. Or so I told myself. 

I had had a good week. I’d managed to get done what I needed to. I survived. On top of which, I’ve been given the go ahead for my surgery and some writing opportunities have come my way. This is all positive stuff!! But that’s the catch twenty two. I’ve found that when the good things start to happen is when we can feel the lowest. It sounds crazy, but it’s true. 

Let’s look at my list. I managed to get the things I needed done. For me that’s a huge achievement. However, I cannot help but see all the things everyone else manages to get done and feel belittled at my meager accomplishments. I cannot help but focus on the vice like grip my health problems had upon me, even whilst I was trying to do the things I needed. To reflect on the sinewy tendrils of pain that weave throughout my body, forever encasing me in a prison of pain. My operation was ok’d. While this is a great step forward in my treatment, it’s also terrifying. The thoughts of being put to sleep, or worse kept awake, and having my insides fundamentally changed fills me with dread. I struggle enough on a daily basis, how will I cope with recovering from an operation?! Some writing opportunities have come my way. Another exciting and wonderful development. More fear and self deprication. What if my writing isn’t good enough? What if I cannot cope with the work load? What if they change their mind and see me for what I really am, a bored cripple (I’m allowed to say it, I am one) scribbling an Internet diary? 

Absolutely everything has a sting in the tail when it’s processed by my head and heart these days. You see that’s what disability has done to me. It’s stripped me of my self confidence and filled the void with doubt and anxiety. Most days I can ignore the niggling thoughts in my head. I can dispel the creeping darkness inside me with the love and light provided by my family. But not today. Because today I just didn’t have the energy. So today I cried. I was sad. Then I cried some more. Because sometimes I just need to let it out. 

I would love to tell you that tomorrow I’ll feel better and be back to my sarcastic self. But honestly, I don’t know if I will. My health is flaring and exhaustion is gripping me like a vice. But I can tell you this. It’s ok to have days like today. It’s ok to feel exhausted and sad, and as though you’ve just had enough. Feel those emotions, hell wallow in them for a while if you need to. But remember that tomorrow is a new day, and while we can’t guarantee it’ll be better, we know it’s not today. Today will be over soon, so just get through it however you need to and know you’re not alone. 

Remember, it’s just one of those days. 

The Storm.

Have you ever lived through a blisteringly hot summer? A summer so long that you feel as though winter will never come. So hot the very ground crackles and hisses as the earth sends up a haze of throbbing heat to meet that from the sky. If you have, then you will know the huge sense of relief when the first rain of Autumn hits, and the land drinks in the precious moisture. We were all so grateful for that rain. We ran outside, dancing and skipping in the growing puddles, relishing the refreshing shower of crystal droplets on our skin. Our clothes soddened and heavy, hair lank around our heads, we played and frolicked in the rain. That night we went to bed exhausted, refreshed and happy, the pounding of the rain on our roof playing the melody to a bedtime lullaby. We slept deeply and dreamt of winter coming. Christmas. Log fires and twinkling lights. 

That was the last night I went to sleep in that bed. My last night as an innocent child living with her siblings and parents. I look back on it now with both fondness and an overwhelming sense of upset. Still now I do not know what happened to my parents. Perhaps I never will. 

 The rain we had played in just hours earlier grew heavier and heavier, eventually becoming an unyielding torrent. By the time I woke at around 4am things were already looking pretty dire. The puddles had joined together to form a large lake, creeping ominously towards our front door. The wind was howling, its sinewy fingers tearing at the slates on the roof. Picking them off like petals from a flower. My parents were in the corner, frantically whispering to each other. I picked up a few words. “There isn’t time”. They didn’t yet know I was awake, and so hadn’t taken the time to hide the fear from their voices. Looking to my sister sleeping soundly in her bed I said a silent prayer. 

 Please God. Please keep my family safe.

Within the hour the water had risen past the front door. Our little house was slowly being engulfed by mother natures wrath. My sister and I were both up and dressed in the warmest clothes we had, our parents dashing around trying to grab anything they could. We had no choice, we had to head out into the storm. We lived at the foot of a huge mountain, the stream had been a perfect source of water but now that very lifeline was exactly what we were running from. Clasping onto the hand of my mother I took a deep breath and braced myself for the wind.

Nothing could have prepared me for the ferocity of the storm that night. My breath caught in my chest as the cold air slammed me with twigs, stones and water. We had hoped to head for higher ground, but the mountainside was slick with mud. Completely impassable. Where would we go? Suddenly my dad pointed and yelled. The tree!! My mother tugged my arm and propelled me forwards, face first into the wind. At the end of our land stood an oak tree, it marked the border of our lot and the start of the national park. Before it had simply been a source of joy and magic for me and my sister. We had a swing attached to one of the low slung branches, and had made a den of the hollow that sat midway up its trunk. I had always wondered how that hollow had got there? But of course it didn’t matter now. Our tree was to become our only salvation. Or so we hoped. 

 My sister was first up with me following close behind. She slipped and scrambled up the slippery bark. Our fingers were cold, and gripping onto the handholds we’d used hundreds of times was an immense challenge. As I followed her I shook with fear. The water was still rising and I could hear the roar of a huge flood exploding down the mountain. I was terrified I would slip and fall. I’d never been a fan of swimming, I didn’t want to learn tonight. Tears stung my eyes as I eventually reached the safety of our den. My parents threw up a bag with some food and a radio before they attempted to join us. But it was too late. Mum saw my eyes widen and new what was coming. The water hit her and dad like a steamroller, knocking their legs from under them. I clung to my sister, shielding her eyes, as I watched my parents get taken away by the monstrous flood. I watched because I needed to see where they went. I watched so I could find them. I watched because I couldn’t tear my eyes away from that terrible sight. 

They didn’t scream. They didn’t cry. The last words I heard as they disappeared from view were words of love. Even in the worst of situations they thought more of us than of themselves. That’s how I’ll always remember them. Loving us more than anything else in the world. Giving anything to keep us safe and happy. Giving their lives for us. Or so I’m told. Their body’s were never found. Nowhere on the plains of flooded ground laid my two loving parents. Where were they? Had they been lost to the elements forever? Or had they survived, and were desperately missing me and my sister as we were them?