If I have one message for this world it’s this one – “Let’s not tear each other down, it’s all about walking together”. ❤️
Will you walk with me for a greater understanding of chronic & invisible illness.
It’s just going to be one of those weeks! Last weekend, I only did things that everyone else would do – go to the shopping centre, cafe and to my daughters to help her clean her flooded apartment! But yet – the last two days, I’ve been floored, seriously floored! As I lay on my sofa with my heated throw, hating that I have not even been able to participate in normal regular activities and this is the worst part about having a chronically invisible illness. It is a life sentence, and unless there is some miracle cure, its with me for forever, there is no getting better soon, no happy ending, there is no end in sight, there is no cure or end game. It isn’t even the physical pain anymore for me thats the hardest thing to deal with, it’s the emotional and mental pain that goes along with it. The guilt, that I am a burden to those around me. Days , weeks like these feel like I’m being crushed, that these illnesses are drowning me and swallowing up the person that I am, leaving only a shadow of the woman that I am and in place is a patient that is ill and weak. Its so hard to deal with.
How am I supposed to fight this emotional and mental choking when simply my illnesses are never going to leave me! If was to have a ‘normal’ illness ( whatever ‘normal’ is) I would see my doctor, I would get a diagnosis, receive my treatment and get better. These illnesses just dont follow a schedule like that. Oh no, my diagnosis were long winding and so very difficult as my symptoms intertwined like a tangled ball of yarn. It was frustrating and confusing for me and the many specialists and it still is. Even as I’m scrambling these words in my journal it is so hard to truly describe this tiredness that never really goes away, or the numbness that fills my limbs, not to mention the twitches constantly moving my arms and legs. Being constantly ill like this is like living in a dark hole of doom and I hate it because I know my true spirit is a positive free spirited goddess. I can’t plan anything as I have no idea how i will feel when i wake up, or when I will go to sleep. It is so hard not to feel anxious and depressed when I live everyday in a life where there are more questions than answers.
People have no idea of how to deal with chronic illness, both the person who has it and the people around them. There is no textbook for living with these illnesses, so when I’m asked what do you want or can I help you – I can’t answer their questions because I don’t usually really know myself. You see when you have an illness or illnesses like these it’s your body, literally fighting against itself. The physical side of it is your body living in constant aches and pains, tiredness, toilet trips to self catheterise, medications, food intolerances along with many hospital appointments and stays…….and the list goes on. This is not normal living which really drains me mentally and emotionally.
What I’m trying to show you is that I feel like a failure, constantly feeling letdown by my own body. I constantly feel guilty, like a burden to others. When my illnesses take hold like this I feel like im having life squashed out of me. A heavy weight hangs over me that my illness affects my husband and children ( and I’ve even lost some because of them) that I am not the wife he deserves or the mum they need. These stupid illnesses hold an embarrassment within me that my body is so broken.
Yes I’m rambling these words because it is a bad day and stepping towards a bad week, but I know that tomorrow or next week, it won’t feel so chronic and the good days, where I have less pain, fewer dizzy spells making it easier to move around with my walker and this will increase the higher positive energy in myself, I will again feel proud of myself, that I got through yet another bad patch and I will enjoy the life that I live in.
This is my life and i have to learn to live and love it. Ive certainly learnt that life does not always turn out to be the one that I hoped for, but it is the one i have and I can’t change that. Ive had to learn to embrace and enjoy the good days because seriously I don’t know when the next one will be but they will come again. I appreciate the smaller and more present things in life now. I have to take control of my own future and try everything i can to make health better, through simply walking, talking, sharing and living the good, bad and indifferent of chronic and invisible illness.
This is my life with chronic and invisible illness what is yours.
‘Let’s not tear each other down, it’s about walking together’.
Walking a journey with chronically invisible illnesses requires self belief!Why belief, well firstly, we need to know that our chronic illnesses are not in our heads. Ive learnt how critical how much being in the right mind and brain space plays a huge role in the steps with living the best possible life I can. Secondly, i can’t just think my way out of my illnesses. I or anyone can wish and hope for better days BUT very little comes from sitting, waiting and wishing. Nothing will change and actually wishing and hoping may actually make us feel more anxious, down and depressed.
When there is a sense of belief, with positive concentration, mindset and attitude, the drive for living despite the health challenges improves dramatically – yes my symptoms are still there but the actions let me walk taller through the challenges. So beliefs are oh so important for the chronic health walk of life. Our beliefs are formed from a state of mind that indicates what we are thinking is true. Beliefs form our behaviours. So when we form positive beliefs we can see how believing a certain way can affect us positively. Our behaviours absolutely need to support our beliefs because if we feel sad and depressed about our circumstances and situations, we will feel powerless and useless and we will most likely become closed in and shut off from life and our illness will dictate our paths and when this happens we become the identity of our illnesses. So stand true, stand strong to who we are, believe in ourselves, our message and our life purpose because when we believe that is true, we are so much more than our chronically invisible illnesses. When we believe in ourselves, we won’t feel like giving up even on those days that feel all too hard (and yes there are those days).
Let’s NOT tear each other down, it’s about walking together being strong and staying strong.
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 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.
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 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.
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.
I have lived with multiple number of health complexities for many years – some of these are medically diagnosed but there are many symptoms that have left me free falling into a state of despair. This despair left me spiralling out of control physically, mentally and emotionally to a dark place, where seriously no one ever wants to go. I was ready to quit trying in every regard of life because health had deteriorated, I was struggling with being paralysed down my right side, I was having limb weakness, bodily jerks & twitches, dizziness, blackouts & many falls and of course I was struggling daily with my diagnosed medical issues. Luckily a hospital stay found a couple of new specialist doctors and they determined that these unexplained symptoms were what is referred to as ‘Functional Neurological Disorder’- FND. It allowed me to begin thinking and breathing a positive path again even though this only new neurological finding is still relatively new to medical research, there was findings of why my body is doing this.
I’m still facing the medically unexplained, due to FND having not that much information about it or its treatments, but it’s a diagnosis and that’s a start and purely and simply, I kind of knew deep within my soul that theses symptoms that I live with was not going to be a nice tidy diagnosis to live with or to be able to explain.
But the aim of this post is to raise awareness for myself and explore the possibility of connecting with others globally that have this disorder bringing connection and support.
So how is ‘Functional Neurological Disorder’ explained;
I have so much gratitude for my specialist neurologist for testing, testing and researching my symptoms and being able to determine, there is a problem within my functioning neurological system. The neurologist was completely open about how little they know about this area of health BUT reinforced that they know it is NOT, “all in the mind” which was beautifully cleansing for my anxiety, as I’ve been attacked and bullied by many telling me that there was nothing wrong and I am just crazy. For the first time ever, with these symptoms a medical professional was discussing a diagnosis and actually given me somewhere to go for all the questions that I have squished within me about what’s going on. The neurologist suggested getting familiar with http://www.neurosymptoms.org and I can’t say how helpful this website has been and will be! Finally I was having a conversation with a medical specialist who was showing me compassion, empathy and understanding and I wonder why my other specialists could not be like this. Since having these conversations, I have had very positive and reassuring discussions with my GP, as well as my neuro-physio and occupational therapist to making living more accessibly normal.
So going forward…..my inner voice still niggles a little about what if they are missing something serious, however, it is becoming more clear to me that the ‘functional’ tag is probably going to be my tag for these symptoms at least and to be honest it comes with a sense of relief. A relief that these tortuous years of chasing explanation for these final unexplained symptoms might be behind me and everything that comes with each appointment – NOW, I can focus on managing what i live with.
It is taking a guts to write and even more guts to publish this post, because I still fear lots about being so open about this disorder because of the stigma given to these chronically invisible and very complex health challenges given by so many in the community. But through being open, honest and very vulnerable, I hope to open up communication for others that are struggling with this disorder too. I want to increase awareness so that more research can be done with the hope that maybe medical evidence will have more answers for the people that live with functioning neurological symptoms but till then , I will work with my physio , occupational and psychological team on exercises to help my body rebuild.
If you are reading this today and your neurologist has discussed FND as a cause for your medical issues, send me a message and let’s connect and walk together supporting one another and raising much more awareness and assistance.