The Tingles In My Toes & That Burning In My Feet….

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.


If you have resonated with this, please let me know or perhaps connect with me on one of my social media channels;

http://www.facebook.com/IAmFNDAware

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Much love and kindness 

Lisa-Raie 💋
“Wandering Towards Wellness, Globally”

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Asking For Help……

Asking for help, is the hardest thing when you are chronically ill……WHY???

Simply, because when we ask for help, it’s acknowledging that we can’t do things for ourselves anymore. Admitting that I required assistance for particular housekeeping chores was such a big thing for me – but I accepted it but I held back from accepting the personal care help, because by accepting that help was me becoming worthless. By knowing that I can not safely go into the bathroom and shower myself is heart wrenching. I’ve had to really search deep within myself to allow personal care to be ok and do you know, I think I am now comfortable with it because I know my safety is paramount with me being able to being able to still live and love the life that I am in.

So what is this home & personal care that I talk of?

Home & Personal care is provided by home care workers who visit people that are somehow incapacitated by illness or disability in their own homes and help them to live as independently as possible.
It’s about maintaining a person’s quality of life in their home – keeping them safe and comfortable, attending to their physical needs and supporting them with their daily activities of living. It’s also important for their social and emotional needs so that they can still enjoy life. As I mentioned earlier, these services help those ill or disabled or it might be for people getting older, who are chronically ill, or perhaps recovering from surgery or disability.

There are many reasons and times in life when someone might need help with daily activities, perhaps a family carer needs to get out of the house and a care worker can come in an provide a few hours of respite care, an adult child may have relocated house to another city or town and can’t help their elderly parent with tasks around the house anymore, a degenerative illness or disease may affect a persons ability to complete activities of daily living like meal preparation and daily grooming.

When the care worker comes to the home, they may need to help with the cleaning of certain areas of the home, making beds, mopping and/or vacuuming of floors. Personal care workers maybe called on to give assistance with showering, bathing, toileting, getting dressed, shaving, helping the particular person in moving around, or perhaps getting in or/and out of the bed and of perhaps medication reminders.

After having my home care workers now for a number of months I am so very grateful and I now look forward to my personal care workers coming to help me wash my hair and generally freshen up. 

Life is about now and I can’t push things away just because it may be icky or intrusive – if these workers can help us still live it’s worth taking a chance and that’s what life is all about. 

Carers help life continue for the chronic illness goddess/warrior and I for one stand in honouring them for all the work they do for us the chronically ill and disabled.

❤️ 

Understanding Chronic Nerve Pain – Neuropathy!

Chronic Nerve Pain it keeps you awake all night…….Let me explain!

So I think everybody at some stage has had tingles or numb fingers or toes or perhaps even felt the nerve at the back of their leg twitch. These are all normal but nothing prepares you for the effects of your nervous system going into major short-circuit mode or in other words CHRONIC NERVE PAIN!
When that happens, you may well find out what it’s like to be one of the millions of people across the world who are living with neuropathy. What is neuropathy? It simply is nerve damage and the cure is? Well …..there isn’t one.

However, those facts tell people who aren’t affected absolutely nothing about what life is like with this chronically difficult to treat condition. Most people have no concept of how nerves work and how essential they are to daily life anyway (why would you, when everything works as it should!) so therefore find it impossible to understand what happens when the nervous system breaks down.

The neuropathy sufferer is faced with the task of explaining their mysteriously weird symptoms to many people who disbelieve what is being felt. 
So as one that is being kept awake a great deal of every night let me explain what happens, Often resulting from damage or degeneration to the nerve itself and cells, that protect the nerves of us the neuropathy sufferers are subjected to a series of confusing and functional breakdowns which send out wrong messages, or no messages at all. It basically can be compared to a short circuit in a electrical system resulting in feelings and sensations that are  pretty unique to the sufferers health issues. Neuropathy affects many people from all over the globe. What does it feel like and why are its symptoms so difficult to explain? There are over 100 causes and also over 100 types of neuropathy, so diagnosing exactly how someone feels with their neuropathy really depends on where the nerve damage is happening and what part of your body is being affected. 

Generally, neuropathy falls into one of the following four categories:

  • Motor Neuropathy;

Motor means movement, so motor neuropathy is damage to the nerves that control muscular activity and movement in the body. It generally affects feet, legs, hands and arms but can also affect speech.

  • SensoryNeuropathy; 

Sensory means touch, so sensory neuropathy is damage to the nerves controlling what and how you feel. So it can affect how you feel pain, or even the lightest of touches.

  • Autonomic Neuropathy;

Autonomic means involuntary, so autonomic neuropathy affects the nerves directing bodily functions you aren’t aware of and have little control over, such as breathing and heartbeat but also digestion (including bladder and bowel functions), sexual response and circulatory problems. It’s easily the neuropathy with the most serious symptoms.

  • Combination Neuropathies;

A nightmare for many, when you have a combination of the above problems.

So I’ve told you about the types of neuropathy and that what is being felt is like nothing you can actually describe but where does neuropathy strike in the body. Well I would say, most people suffer nerve pain problems in their feet first. Feet are at the end of the nerve pathways and the furthest away from the central nervous system. So perhaps it is logical that problems would happen there first. So back to the feet, where the majority of people first notice something going wrong but neuropathy is never an immediate finding – it can take years to develop and creeps up on you without you really noticing a pattern developing – it’s part of the reason why it is so difficult to diagnose and treat. Initially, you may suffer a loss of feeling or numbness in the toes. Gradually, you begin to feel as though the toes are numb and painful, along with tingling, or other strange sensations. It’s as though the toes have been anaesthetised on the surface, yet just underneath it’s painful, or tingling. This set of feelings often spreads to the other areas of the foot or leg. To describe the feeling – it is similar to be walking on ice or snow with bare feet or sometimes as if your bare feet are walking across an electric force field. It is a weird feeling and very uncomfortable.  When you have severe nerve pain/ neuropathy it can feel as though you’re walking on bare bones. The problem is that the numbness can lead you to walk strangely, or lose your footing so that you fall. You feel as though you’re doing the right thing to make your feet move in the right direction but they do something else instead which is truly frustrating.Basically the wrong messages are being sent out and there’s a communication breakdown between the brain and the feet. So as this is happening to your feet, you may begin to feel like your legs are heavy, or like your muscles aren’t responding and becoming weaker. Climbing stairs can be both painful, tiring and frustrating and just plain walking can feel like a massive effort because you begin to constantly trip over what feels like air and just stumbling when you least expect it becomes a daily occurance. 

This is why I’ve ended up using a walking stick and more recently a 4 wheeler because of my muscular tiredness and to give me the feeling of more security with balance when i walk. Balance has become a major issue for me and sometimes I feel like I am walking like a demented alien.

As my neuropathy has worsened, I’ve developed it in my hands. I began lose control of my grip and I started dropping things which is totally frustrating. I’ve now lost use of my right arm and the effect this has on me is massive as I have a lack of self trust and confidence in my own daily actions leaving me frightened and confused as to what is happening to me.

I would say the hardest  thing for people to understand is the pain neuropathy can bring. It’s like nothing else ive ever experienced. It can range from mild tingling or burning, to pain that can leave me screaming like I am going to die AND especially at night. It can feel as though your 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 i long for the numbness that i began with. I often get the feeling of a ‘electric shock’ in my legs and arms. Often the muscles will spasm, leading to twitches and spasms which together with the shocks, the burning and the tingling can lead me to actually cry. 

It has to be said, everybody’s neuropathy is unique to themselves, so the symptoms you see here can be anything from mild to severe. It’s little wonder that opiates can be the only course of action in the end but even they have their limitations, leading to increased doses and addiction. 

So I’ve let you know about all the sensations, you can experience and the strangest of feelings. Stepping on a stone may feel like treading on broken glass and hot bath water can feel cold leading to many cases of burns. People with neuropathy need to use an unaffected part of their body to test textures and temperatures, so we don’t hurt ourselves.

Other problems with neuropathy can be urinary problems and digestive malfunction. The nerves to blood vessels, intestines and bladder are damaged by the disease and give out faulty messages leading to abnormal behaviour in functions which we take for granted. In my circumstances, I can feel bloated after eating only a very small portion; and I can no longer empty my full bladder even though my brain thinks my bladder is empty. This has led to problems with constipation and diarrhoea. 
I Hope I have given you some idea of what it’s really like to live with nerve pain/neuropathy. It’s a horrible disease because it’s so unpredictable. I and many others live with only mild discomforts with only a little tingling & numbness here and there but then can suffer dreadfully in a instant needing to be on the harshest of medication to control the dreaded symptoms and it must be remembered that the medication only helps to manage symptoms it doesn’t cure them. So till a cure is found I and many others will just have to live with neuropathy as best as they can and find the best treatment available to help their own nerve problems. 

Let’s NOT tear each other down, it’s about walking together.

💋