Oh wowzers- it was one of those nights! Yes the type of night, when tingles in my toes, feeling like the nerves in my feet were burning and then of course the leg twitches begin giving an extra amount of shooting pain. You see, this happens when my nervous system goes into major short circuit warfare. It’s occurance because I am one of many across the globe living with neuropathy. Neuropathy is nerve damage or some kind of internal disruption. That’s the simple definition BUT what’s not simple about neuropathy is the cure – THERE ISN’T ONE !
If you are a person who isn’t affected by this hideous condition then you will have absolutely no idea about what life is like, living an average day or night. So let me try and explain. Most people have little or any knowledge of how their nerves work and how vital they are to daily life anyway and so when the nervous system breakdowns they find it impossible to understand. I as a neuropathy sufferer have faced the difficult task of explaining my weird symptoms to doctors, friends and family for a long time. The description of my pain as spoken about at the beginning of this blog, has left me feeling frustrated and not taken seriously on many occasions. But what is happening is damage to the nerves itself and particularly the lining that protects the nerve. What is occurring to neuropathy sufferers like me, are a number of confusing, functional breakdowns which send out wrong signals, or no signals at all. It really can be compared to a short circuit in a domestic electrical system but the resulting feelings and sensations are pretty unique to the condition and every sufferer. It’s important to remember that neuropathy affects all sorts of people from all areas of society across the globe. Just as their are many people like me that suffer with neuropathy, there are also over 100 causes and over 100 types of neuropathy, so pinning down exactly how someone feels with their condition really depends on where the nerve damage is happening and what part of your body is being affected.
So, where will neuropathy strike and how do you recognise it? That is the biggest problem for all neuropathy sufferers! Generally speaking though, it’s in the feet first. The best way to explain this to you, is as I had it explained to me. Feet are at the end of the nerve pathways and the furthest away from the central nervous system. So perhaps logical that problems happen there first. The nerves there are part of the peripheral nerve system. This is peripheral neuropathy and what my diagnosis is. The nervous system consists of the spinal cord leading to the brain which makes up the central nervous system – all the nerves radiating out from there are peripheral nerves. Back to the feet, where the signals of neuropathy usually begin! Let me tell you, that this pain is never an overnight happening, it can take years to develop before you even notice anything which is why it is so difficult to diagnose and treat. My neuropathy has lead to my walking gait being strangely affected usually by losing my footing or miss stepping. I feel as though I am doing the right thing in order to make my feet move in the right direction but they do something completely out of order else which usually leads to falling. This collection of actions are because the wrong signals are being sent out, through a communication breakdown between my brain and my feet. Not only do the feet feel odd and painful but my legs can feel like they are becoming weaker. Climbing stairs and the simple action of walking can feel like an fitness boot camp , as I constantly now trip over or stumble when I least expect it. I now use a 4 wheeler walker as assistance with balance and security when I walk. Because of the nerve damage in my feet now when I walk , I will clench my feet in order to get a better grip on the ground beneath me. Obviously this leads to loss of relaxation and then muscular cramping of the feet occurs. So yes, balance becomes a major issue when chronically affected by neuropathy and i often feel like I’m walking around like I am drunk. Feelings and sensations like what I experience in my feet, also affects my hands and arms. When these instances occur, i can lose control of my grip usually causing me to drop things. This is where, you cannot even imagine the effect this has on me or others effected. What happens is a total loss of trust and confidence in our own actions leaving you frightened and confused as to what is happening and that isn’t taking into account neuropathy pain!
The pain neuropathy brings – OMG, where do I start! The most difficult thing for friends and family to understand is the pain neuropathy can bring. It’s like nothing else you’ve ever experienced. My introduction was just the tip of the iceberg. It can range from mild tingling or burning, to pain that can leave you crying in agony, especially at night (the reason I was up, writing this). It can feel as though the affected areas are on fire and burning sensations are perhaps the commonest after tingling. Tingling sounds innocent enough but it can be so severe that it’s extremely painful and then you long for the numbness that I initially began with. I often feel like what feels like electric shock symptoms. It’s little wonder that opiates are my only course of action but even they have their limitations, leading to increased doses and other debilitating symptoms occurring and of course addiction to those medications. So with all of those weird feelings and sensations, I need to be especially careful with hot water as to me it can feel cold or vice versa leading to cases of burning myself. The same goes for my urinary problems and digestive malfunction. It’s very difficult to relate these to nerve damage but they are also common symptoms of neuropathy. The nerves to blood vessels, intestines and bladder are damaged by this condition and give out faulty signals leading to abnormal behaviour in functions which most take for granted. What happens is that i feel bloated after eating only very small portions or I will have difficulty emptying my full bladder yet the brain tells me that my bladder is empty. This has left me permanently disabled and now needing to self catheterise daily. This sort of thing leads to infections and instances of diarrhoea and constipation.
So do you see why trying to explain this, unless you have experienced it, is so very difficult! If you don’t live with neuropathy, you just don’t understand what it’s like. But hopefully I have given you a better insight of what it’s really like to have neuropathy in your life. It’s a horrible condition because it’s unpredictability. Some people go for years with only mild discomforts with only a little tingling here and a little numbness there – while others like myself suffer dreadfully and need to be at times on the heaviest of opiate medications to control the symptoms. All i ask is that if you know anyone that has neuropathy, PLEASE offer sympathy and understanding because their lives are difficult. Chronic pain is a feature of this condition but the chronic pain of neuropathy is possibly one of the meanest of them all and not to be underestimated.
Much love and kindness
“Wandering Towards Wellness, Globally”