By KJ
I recently posted about my chronic pain and how much it breaks me down, makes me often feel useless, exhausted, and completely and utterly emotionally drained.
Chronic pain. What is chronic pain? Shouldn’t I just take pain relief? Why can’t I make it stop?
Chronic pain is pain that lasts for longer than 12 weeks despite medication or treatment.
I don’t know specifically why I have it or when it started but I think I have had it most of my life. I have always been over sensitive to pain. Periods have always been off the scale painful and hard to manage. It’s hard to explain ‘full body’ pain but I will try to describe what I feel.
When I wake up, the first thing I notice is pain. It’s very hard to want to open your eyes when you’re greeted with the struggle of waking up. I feel a burning ache across my skin, all of it. My joints hurt, especially my elbows, hips, wrists and hands. It hurts to be touched by someone and that’s not an exaggeration, it’s called allodynia. It’s a completely over sensory experience.
I have chronic back pain from trauma, I have disc degeneration and dehydration up a lot of my back and neck, inoperable but then again, that’s not always the answer. If I have been on my feet for too long, I get shooting nerve pain down my left leg down to my toes or get numb toes and feet. The numb toes and feet thing really pisses me off as it stops me from using the cross trainer at the gym and I enjoy the gym, but since lost the confidence to go.
Fibromyalgia follows from this which is a long term condition which causes pain all over the body. From this, I get tired very quickly, I can’t think straight and get something called ‘Fibro fog’ which sort of feels like you’re having an outer body experience. It’s like you’re watching yourself from the outside as an observer. Your thoughts are stunted as well as your movements. Your reactions disappear, simple things such as laughter, joy, and even sadness. It’s like a bad dream where you’re watching yourself on stage and you’ve forgotten your lines, without your trousers on. You just can’t think and words or names you’ve used 1000 times, you’ll forget.
Then we go onto my facial pain post tumour removal where I had all my sinuses and small bones and passages in my face removed and bone drilled down. Post traumatic trigeminal neuropathy and chronic myofascial temporomandibular disorder. Trigeminal neuralgia is sudden, severe facial pain. It’s often described as a sharp shooting pain or like having an electric shock in the jaw, teeth or gums. It usually happens in short, unpredictable attacks.
Temporomandibular disorders (TMD) are disorders of the jaw muscles, temporomandibular joints, and the nerves linked to chronic facial pain. I’ve clenched my jaw to the point of cracking my teeth at the back. It can be extremely hard to open my mouth more than 1cm at times, as it can also be hard to chew, making meals sometimes an unbearable challenge.
I am hyper-mobile too – I have a condition called Ehlers Danlos syndrome. This means my joints hyper extend; they go further than they’re supposed to. This adds to my pain because even holding a pen can be difficult to manage without my fingers going backwards. It can cause dislocations but I haven’t had those in years, apart from my hands.
I still have pains from childbirth 5 years ago too. My scars still throb as if they’re fresh.
I had a very bad accident when I was younger and had a lot of broken bones in my face which caused the growth of the tumour in my sinuses. I used to be an avid swimmer and used it to control my weight and the weightlessness was just heaven exercise for pain and took it at my own pace however, I can now no longer go under water without choking myself to death so the pool is sad place for me as I long to go in but the anxiety of being splashed or going under stops me. I find it hard to go to my son’s swimming lessons and my husband takes him.
I am ‘experienced’ with my pain but that doesn’t make it any better. The above diagnoses have taken years upon years of appointments, physiotherapy, hydrotherapy, occupational therapy, mindfulness therapy, tests, blood tests, CT scans, MRIs and more.
The best thing I ever did was push for specialist pain centres who could effectively manage my pain. I have come a long way from where I was before but I still have very vulnerable points when I just can’t manage the thought of pain day in, day out, anymore.
I had a pain appointment last Thursday and I do think I was triggered a little by it. I have relied so much on these appointments and the face-to-face contact of someone that understands me and is genuinely there to help. I am known to them, they have been on this journey with me, settled my mind, helped me manage myself and my medication when my times have been the darkest. The same faces and that first breath of relief when you see them. It’s been truly, the most amazing relief to have them.
My consultant told me that I have been doing well and I was still under their care but my regular reviews are whittling down as ‘there’s not much more they can do’. I can message and get an appointment any time in the future but for now it’s about steady ‘management’.
My mind went into a panic. Without this safety blanket and with the hopes I could make it disappear somewhat even though I have been going through this for years and know it won’t end, it just made me very aware that this is going to be for the rest of my life. It’s hard not to be depressed.
I take several medications. High dose duloxetine for pain management, mirtazipine for depression and anxiety, various sinus stuff, sleeping tablets or high dose antihistamines for sleep, various forms of pain relief from lidocaine to dihydrocodeine for pain/sinus flares. Nasal washes and nasal sprays. Capsicum cream. Nasal steroids. Migraine medications. Iron medication. I have tried so much. Everything. This is just my current list but it has taken a lot of trial and error to get to a point where I am comfortable with my pain medication. The other stuff is quite unwanted and I find I am a little resentful about it.
I didn’t post an ugly cry face for attention. I just needed to show someone the other side of me that people don’t see. I hide myself quite often and sometimes it’s just really hard to communicate in ways other than photos.
So being on social media is a way to communicate my struggles and my successes with my chronic pain and gardening. It is a way to encourage others to find something they love, whether it be gardening or not. It’s about sharing a passion and feelings, and meeting like-minded people.
I’m not here to do silly dances and make money from a group of potentially vulnerable people who believe what they read on the internet. What you see is what you get and that won’t change from me. I’m here for discussion and debate, and as i have mentioned before, my expressive outlet.
So what do I mean by managing my pain? Managing pain is when it’s still there, but you are focused on something other than it. Some days are much better than others – it’s basically a way to live mindfully and focus your energy into something you love, regardless of the pain.
This is where gardening comes in. It is more or less and all year round job and at first I started small and clueless – just like most people. But the more I grew and started to understand that there was a life and a process outside of my own selfish thoughts, I found that when I was getting my hands actively dirty, then I was still in pain, but I was happy.
Imagine that! Being happy and in pain at the same time. It’s weird I have to admit and sometimes I do punish myself for being happy. But when I am at the allotment, I feel that the little patch of land I have is my own personal island. Escapism at its finest.
I’ve never had such a place to call my own. If I didn’t enjoy it, I wouldn’t do it. Why not make it a tropical paradise? My literal blood, sweat, and tears have gone into mindfully controlling my pain. It’s damn hard – it’s damn hard for anyone regardless of abilities!
I love it there, more than anything! I love the plants, the process, and the rewards that come from such simple but delicate processes. I love studying what I am doing so I understand it, and also so I can share the love for it. There is no better distraction.
Remember that if you don’t quite feel yourself, that there is always someone out there for you.
A great place to start would be your GP or you can call or text Samaritans 24/7 on 988.
