MY MIND MIST

In the view fom Urqurhart’s Bay, Whangarei Heads, there is a magnificent mountain, Mount Manaia. This mountain somehow represents such strength to me and I really enjoy looking out to it each day. One of the things that I love about this mountain is the way that it looks spectacular and very different from different angles.

However, this morning when I woke up there was a change in our view. Mount Manaia was completely shrouded in mist and only its silhouette could be seen. 

I thought that this was a very good illustration of how depression affects me nowadays. It is often when my physical pain and headaches are very bad that the mist falls. Even though I am usually bold and strong in spirit, seemingly out of nowhere a mist covers my brain. During these misted times I feel weak, anxious and hopeless. However, at these times I have to cling to the fact that just as the mist over Mount Mania clears within hours, so too will the ‘mist’ over my brain. That I just need to rest in the knowledge that it will move on and the strength and boldness will return.

I find it very hard when under the ‘mist’ to remember that I even possess strength, that my life is full of hope, and that there are things to look forward to. Depression is really hard like that in that when it comes, it completely shrouds my brain and momentarily blocks all memories of happier, stronger times.

There is something else about the mist that falls during these times - it seems to block me from seeing, feeling or hearing from God. God feels distant and when I look up or around me all I see is the thick mist. It is during these times that I struggle to see the light that inspires me, hear the voice that encourages and lifts me, nor feel the hope that leads me on.

One thing that has really helped my during my low times over the years has been in turning to the Bible. The words of King David have helped me so much. He knew and understood abandonment, fear, despair and sorrow and expressed it clearly in the Psalms.

“O Lord, the God who saves me,

day and night I cry out before you.

May my prayer come before you;

turn your ear to my cry.

For my soul is full of trouble

and my life draws near to the grave.

I am counted among those who go down to the pit;

I am like a man without strength.

I am set apart with the dead,

like the slain who lie in the grave,

whom you remember no more,

who are cut off from your care.

You have put me in the lowest pit,

in the darkest depths.”

Psalm 88:1-6

Something about the Psalms that has also really helped me is the way that when David turns to God he always finds strength and senses joy again.

It has also been a real inspiration for me to see that relatively quickly, sometimes within the space of a Psalm, David is able to see the light and feel joy again.

“I will sing of the Lord’s great love forever;

With my mouth I will make your faithfulness known

through all generations.

I will declare that your love stands firm forever,

That you have established your faithfulness

in heaven itself.”

                    Psalm 89:1-4

I have also found real peace and inner rest in turbulent times through David’s words in Psalm 62.

“My soul finds rest in God alone;

My salvation comes from him.

He alone is my rock and salvation;

He is my fortress, I will never be shaken.”

                    Psalm 62:1-2

I love the visual imagery that this Psalm brings to my mind. When I have gone through periods of feeling overwhelmed by anxiety I have visualised a solid rock fortress around my mind that no thoughts can penetrate. In visualising this I have been able to halt my racing, anxious thoughts, seeing them unable to get past this wall.  When this image has sunk in, my soul and mind have found rest.

Through the Psalms I believe that David has shown that it is actually alright to feel fearful and anxious one day, and then to feel at peace, happy and joyful the next.  I believe that this isn’t a sign of inadequacy or weakness, but is in fact part of the human condition. What I believe is the key is that what enables this change to happen is in David’s turning to God.

I have personally found that during my ‘misted’ periods, even though I can’t see or feel God, when I turn to Him and express the pain I am feeling, I know He hears me and will answer in His good time.

Psalm 13

^"How long, Lord? Will you forget me forever?

    How long will you hide your face from me?

 How long must I wrestle with my thoughts

   and day after day have sorrow in my heart?

   How long will my enemy triumph over me?

 Look on me and answer, Lord my God.

    Give light to my eyes, or I will sleep in death,

 and my enemy will say, “I have overcome him,”

    and my foes will rejoice when I fall.

 But I trust in your unfailing love;

    my heart rejoices in your salvation.

 I will sing the Lord’s praise,

    for he has been good to me."

THE JOY OF TAKING PART MORE IN LIFE

In the past 13 years I have obviously lived. However for many of the past 13 years I was only really able to exist and I certainly wasn’t able to play an active role in anyway in anybody’s life. Since having six lots of neurosurgery in 8 days in 2000, my life changed forever.

In 2001 my oldest darling nephew was born, then in 2003 my 2^nd  gorgeous one. In 2004 my sweet little niece came into the world and in 2006 my dear youngest nephew graced us with his presence. Even though I have been their Aunty for many years now, there were many of those years where I was unable to play an active part in their lives.

There were many years when I had to spend the time of their visits in bed. There were also many years where I was only up and about for very short components of their time visiting here.  There were many times too, when they would come up and be at my bedside when I was in hospital. During those years I was too unwell to play any sort of role in their lives other than to just be an Aunty. However, fortunately they don’t remember these years.     

Hunter won’t remember visiting me when I had a pressure monitor put in my brain in 2002, Angus won’t remember his coming along to my ‘Celebration of Life’ party marking the 10 year anniversary of my diagnosis, Stella doesn’t remember my holding her when I was so drugged up on steroids and morphine that I could barely string a sentence together, and Will certainly won’t remember me from the years after he was born where I was recovering  from the major neurosurgery  which I had earlier in in 2006, the year he was born. The saddest reality for me is that I also have no memories of them from those years.

It hasn’t really been until these past two years that I have been able to actively play a role in the lives of these gorgeous four children. In fact, the reality is that prior to these past  two or so years I wasn’t up to actively playing a role in anybody’s life.  My day to day life merely existed of existing – my mind dulled with morphine.

It has been to my utter delight in these past recent months to have been able to take part and actively play with my nephews and niece. Even though my hand- eye coordination has never been grand (more than a slight understatement!) it has brought me such incredible joy to be able to be ‘double-bounced’ by Stella and Will and fall over on the trampoline in fits of laughter. To be able to occasionally (when my hand pain allows me to hold a sword) beat Hunter and Angus in sword fights and to be able to lose miserably playing outdoor badminton and tennis with them.

Another area of life that I haven’t been active in much at all in these past 13 years is in cooking. Cooking, food, and flavours are one of greatest my passions in life. It is very much in my genes to be a ‘foodie’ (aka someone ever-so-slightly obsessed with food!) with my Nana being a great cook, along with my mother.

In the year prior to all the surgery in 2000 I was very into throwing dinner parties. It brought me such joy to cook the meal and then share it with 10 or so dinner guests, and then shape the leftovers into something delicious to share at a potluck lunch for up to 30 people on the Sunday.

However, after my chronic pain muscle disorder coming onto the scene, as a result of the 6 lots surgery, I struggled greatly to stand at a bench due to the pain in my back. I was also very weak over many years, and having radiotherapy and two more lots of neurosurgery, I found it really difficult finding the strength to stand at a bench and prepare food. I was able to do a small amount of cooking but it was only been making things that were quick and easy to make, and with my mother’s assistance.

 

In 2008 my pain condition advanced to my hands which made fine finger movements, such as holding cutlery, or a sharp knife, extremely difficult.

I am incredibly blessed in that my mother is an amazing cook and over the years she has cooked me stunning meals every night. Last year however, I reached a point where I decided I wanted to play a more active role in the kitchen and wanted to try to find ways to do difficult things in spite of my hand and back pain.

I spent a weekend staying with my sister and discussed all of this with her. She suggested I google ‘cooking with arthritis’ and to my amazement there was a book published in 2009 under that exact title. This book had techniques with pictures to show easier ways of cutting, stirring and doing difficult things in the kitchen.

Since that weekend I also researched and found many gadgets that are designed for people who have similar pain issues. These gadgets do very simple tasks that I have found near impossible since my hand pain issues came on. Tasks such as opening jars, opening cans, cutting, and especially dicing and slicing vegetables and stirring things. Many of these tools have been designed purely for convenience for able-bodied people but for people with hand pain issues - they are a life saver. These kitchen tools have helped enable me to get back into playing an active role in the kitchen and I love every minute of it!

Unlike many people who see cooking as a labour, to me it is such an incredibly satisfying experience and such a joy to be able to do it again. When I am preparing food and cooking I make sure I have my favourite music playing, sing a little and thoroughly embrace the whole experience.

Things such as playing with my niece and nephews and cooking could seem like such simple joys that I would never have realised were privileges if it hadn’t been for the weakness and pain I have experienced in the past 13 years.

I am so very fortunate to have been able to play a more active role in other’s lives in these past few years. It is also such a blessing that I have had a brain that can think and remember, with a few necessary aids. As I’ve come off the heavy pain drugs the cloud that hung over my brain has lifted and it has given me immense satisfaction to be able to support other people at times.

All of the things mentioned in this blog are just the norm for most people but because I had so many years where I was forced by my circumstances to be completely inactive I now find so much joy and delight in being able to once again play an active role in my life and the lives of others.

18 YEARS ON – INCREDIBLY BLESSED TO BE ALIVE

This coming Wednesday (the 3^rd of October) is the 18^th anniversary of my being diagnosed with a brain tumour. It is difficult for me to put into words how incredibly blessed I feel being able to write this blog 18 years on.

In my posts that have been written on this blog and my original blog (www.kiwibraintumoursurvivor.blogspot.com) I have talked about my life with a brain tumour and what I have experieinced. I have also talked about my reality living with continual pain and how it influences my outlook on life. However, I feel as though I haven’t talked enough about the fact that I am so incredibly fortunate to even be here.

The unfortunate truth about brain tumours is that there are very few people who are as lucky as I am. Very few who are so blessed as to be able to be talking about their experiences 18 years after they were diagnosed. Very few who would survive 10 lots of invasive neurosurgery. Very few that, if they did come out of the surgery, would be able to think clearly enough to be writing about it. I am just so blessed.  

The reality is that you can be the strongest personality there is, have the greatest spirit and the most fervent faith, and yet you still have so very little control over what your outcome will be with cancer.

I am so incredibly blessed that my brain tumour is the lowest grade of the best type of ‘juvenile’ cancer. The grade of my tumour is the slowest growing, and the type is the least likely to spread. A doctor explained to me once “You have the best possible type of brain tumour, in the worst possible place" (the brain stem).

Unfortunately my tumour did start to grow in early 2002, but I am so extremely fortunate that it responded well to the radiotherapy I had in December that year. The cancer component of the tumour is now minimal. I am so very blessed as it is unpredictable whether or not any tumour will respond to radiotherapy (or chemotherapy, which was rarely used on my brain tumours when I was diagnosed 18 years ago and I have never had). How incredibly fortunate I am to have had the cancer cells of my tumour greatly reduce in response to my having radiation.

I am aware that I have repeatedly used the words blessed and fortunate in this blog but it is for lack of there being better words to use.

I have also discussed in previous blogs how my living with continual pain is actually a blessing in that it is a stark reminder to me each day that I am alive, but I want to stress that point again.

As my back pain shoots up my spine, I try to remind myself of those who have not made it with their battle with bone cancer. When the burning heat of my headaches flares I try to remember the many people who would do anything just to be alive and experience that pain once again. When my hands are too painful to write with, I try to remember the many other people who also have to live with this kind of pain but who can’t use their hands for anything.

If I looked for them I am pretty sure I could find reasons to groan and grumble about my condition. However, I think with anything in life, what we focus on is what our reality becomes. I don’t want a life focused on pain, rather I want one focused on gratitude, and so I choose to consciously reflect on that.

So each day as I walk in my good fortune I try to reflect on how incredibly blessed I am, and what God could perhaps want to use me for in light of this blessing.

And though it may sound strange, I am also grateful for having had to face death many times. I believe that those of us who have looked death in the face and yet have lived have an indelible sense of security and destiny. I know that I will not die until God ordains it and I feel that there is a purpose for my life.

To me this is one of the greatest treasures of my journey with a brain tumour – not feeling as though my life is meaningless and without a purpose. There are so many people around who sink into despair with feelings of worthlessness and that their life is meaningless. I just so dearly wish that normal, healthy people could realize the same things I now understand without having to go through the struggle that many of these past 18 years have been.

What a treasure it is having a true appreciation that every day of life is a God-given gift.

I CAN DO ALL THINGS......

In these past 12 years I have experienced physical weakness and pain like I had never known prior to this time. The amazing thing to me is that it has been in this depth of weakness that I have come to know the strength of God in ways I had never experienced before.

After each of the 8 lots of neurosurgery of the past 12 years I was reduced to complete weakness, but I don’t remember anything of these times. All I know is that God somehow gave me the inner strength to be able to climb out of post-surgery weakness, overcome the temporary disability that the surgeries left me with and, as much as physically possible, get on with life again.

The time that I have come to know, and remember well, God’s strength has been in pushing past the pain barrier every day over these past 7 years, when working out.

After my surgery in 2004 I was put onto steroids to reduce the swelling in my brain. This was supposed to only be for 6 weeks but unfortunately the swelling didn’t reduce in that time and I had to remain on a high dose for 14 months. Steroids increase your appetite by about 10x and you are not allowed to try and lose any weight you gain during the time period you are on them. In the 14 months that I was on the high dose I put on 40kg.

I was still walking 4 – 6km every day. Then later, when I started falling over a lot in 2005 I hired an elliptical cross-trainer.

What was causing me to fall over all the time were two blood clots pushing against my brain stem. I had to have surgery in early 2006 to remove these and was left extremely weak, unable to walk straight or see clearly, and with no short-term memory.

During this time I was continuing to put on weight, but had a very strong heart because I was so fit. The doctors said that it was due to this that I came through the surgery as well as I did.

At the beginning of 2008 the chronic pain condition moved to my hands. This pain got so bad that I struggled to feed myself, or hold a pen or paintbrush. I had been using a TENS machine on my back for pain since 2005 and I was shown how to use another TENS machine on my arms to relieve the pain and it was a great help.

When I asked a pain specialist if he knew what was happening with this pain ‘spreading’, he said that it was merely ‘the nature of the beast’ - that beast being my pain condition. When the pain moved to my hands it upset me considerably as I hadn’t even known that pain could permanently move to new areas and I feared where it would move to next. I remember saying to God that this was too much and that I didn’t know how I could cope with it.

I remembered at that time a verse that said that God will not let us be tested beyond what we can bear and will provide a way out. I can now see that the TENS was my way out for that time.

In ’09 the pain condition moved to my legs. This made it very painful for me to walk and for a short time I was unable to drive. During this time I remember thinking that there was just no way I could use the TENS on my legs, and so just didn’t know how I could cope with it. It made travelling anywhere, even as a passenger, excruciating.

The physiotherapist that I had seen weekly for acupuncture on my arms then showed me how I could use TENS on my legs and with this I found the pain in my limbs wasn’t as intense.

While all of this was happening I began to experience God’s strength in a way that was far beyond what I had ever experienced before – it was profound to me.

Each day I felt too weak and in too much pain to be able to do a workout. I remembered however, a scripture that said “I can do all things through Christ who strengthens me”. (Philippians 4 v. 13) I remember in those initial days working out on my cross- trainer saying “God you say in the Bible I can rely on your strength, I believe what you have said, now please step up with that strength.” And I would make my way through my workout. Still to this day, I look back after an hour twenty of working out wondering how on earth I made it there -   there is always at least one area of my body hurting greatly.

In the first 7 months of 2010 I began to react severely to using the TENS machine. TENS stands for Transcutaneous Electrical Nerve Stimulation and I had 8 electrodes attached to my skin. I had the electrodes put on when I got up and had them on until I went to bed at night.

In early 2010 I started getting a severe itching reaction from both the electrical stimulation and the adhesive tape that had to be used to hold each TENS electrode down.

My reaction became so severe that I wouldn’t only get intense itching where the electrodes had been that day, they were in different places everyday, but also where they had been for the previous three days.

Even though I had assumed I would be using the TENS to help with my pain for the rest of my life, it ended up not being a difficult decision to stop using it. I had to choose the lesser of two evils, and with having intense itching in 32 areas of my body 24 hours a day, pain was certainly the lesser.

On the first day without TENS I wondered how I would be able to do any workout.  I talked to God about it all day and felt Him saying to just continue to trust Him to provide me with the strength I needed.

I sang “I can do all thing through Christ who strengthens me” to myself from the beginning of my workout and found that after 5 minutes or so my back pain eased and I was able to get through it just as I had for all the years before.

Through these experiences I have come to know that when I rely on God in my times of weakness, He will always provide me with the strength to get through them.

An extra blessing in my working out has been that between 2007 and 2009 I lost 52kg and have maintained that weight loss.

FINDING STRENGTH AMIDST PAIN

 Can one person’s pain be compared to another’s? I believe every person’s pain, be it physical or emotional, is 100% real to that person and unique to them. To them, that pain hurts and may well be the worst that they have known. How and why then should their pain be compared to anybody else’s?

I believe God gives each of us only what we can bear, He will never allow it to become too much and if we turn to Him He will be there to comfort and strengthen us. We make a conscious choice of going it alone, or asking for God’s help.

Turning to God for strength is not just “the way we are” – a believer or not – but is an acknowledgement that we are weak and in need of strength that we don’t have within ourselves.

The most part of these past 12 years have been a real struggle for me and I wouldn’t want to have to re-live them. However, I am grateful for having been diagnosed with my brain tumor (in 1994), and then later (in 2000) with chronic pain. I am aware that this may sound very strange but I am grateful for what going through the physical and emotional hardship has given me – an appreciation of the gift that every day is. Having the awareness that from the moment I wake up I am in need of God’s strength is another great blessing.

In modern society weakness isn’t seen as being a positive thing, but I think the opposite. We have shouting at us through the media that being strong, being fit, not being in need of anything or anyone is what we should aspire to. So it isn’t surprising that physical and emotional weakness is perceived as a negative thing.

It has only been in experiencing extreme weakness over these past 12 years that I have learnt that I can’t do it on my own. I know that I am dependent on God’s strength to get me through every hour of each day and this is the reason that He is the first ‘person’ I turn to each day. I get through each day by turning, time and time again, to God for strength. In the fourth chapter of Philippians in the Bible Paul says “I can do all this through him who gives me strength” and this is something that I have personally found to be true.

Jesus said in the book of Matthew in the Bible, “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” When I have turned to God with my pain I have found Him. I have then asked Him for the strength to keep going through the hardship, have experienced a lifting of my burden and have found the strength within myself to keep moving forwards.

Sure, God hasn’t actually taken my pain away, but He has given me the strength to cope with it. This is how I have found strength amidst pain.

KEEP MOVING FORWARDS!

While holidaying at the beach, on a mildly warm day, I went swimming. In spite of my being an absolute water-baby and being prepared to swim at any temperature, when I entered the water I was struck with how freezing it was. Even though I was initially paralyzed by the cold, thoughts didn’t even enter my mind to leave the water. I knew that it would warm up and become pleasant if I just kept moving and got into the deep.

I saw a parallel in this of when we try new things that aren’t known, comfortable territory. In the past two years I have been challenged to try many ‘new’ things. I had completely forgotten how I had done these things due to my memory loss after each lot of neurosurgery and I was not at all sure I could still do them.

After one of my specialists, who is a musician himself, heard my clip on YouTube he strongly encouraged me to start singing again. But the thing was that I couldn’t remember how to sing, or even produce a note. Even though I had sung at weddings for my holiday job during my university years, that was 10 years ago and a lot of memory loss had occurred in that time. I had absolutely no idea how to produce musical sound vocally. But this doctor encouraged me with such enthusiasm, that I started to consider trying again.

At first I was very tentative and quiet, only taking very small ‘steps’ in my singing. I was having to have two skin treatment baths a day and initially I very timidly sang out prayers for people while I was in the bath using an old Gregorian chant that I knew, as my musical backing. When I would hit a ‘bum note’ I would abruptly stop singing and it would take a few moments before I would feel the courage to try again. What I found encouraging was that the more I sang the fewer of those notes there were, and when they did occur I could just take a breath and restart.

Over the course of a couple of months my confidence grew and I started to want to sing more than just in the bath, and more than just Gregorian chants. I started to listen to jazz music again, after a 10 year break. As I started to try and sing jazz with very tentative little steps, those steps became confident, excited strides. I had completely forgotten the amount of joy it filled me with when I sang! With my singing, I went from cautiously paddling in the shallows to rolling in the deep.

What had initially been an absolute challenge started to feel natural. Now, 18 months into singing, part of me can’t understand why I hadn’t tried sooner as it brings me so much pleasure. I had assumed that because I hadn’t done it in such a long time, and couldn’t remember how to, that it was no longer within me. Most of all I had completely forgotten how much pleasure it brings me to sing.

However, if I had stopped moving forward with my singing and had remained ‘frozen’ when I hit those ‘bum notes’, and if I had let the weakness in my voice when I had first started deter me, I would never have moved into finding the fullness in my voice again.

This whole experience has made me wonder what else there is still lying latent in my brain that I could rediscover?

In all of our lives there are things we did and enjoyed when we were young and have since stopped doing. Our lives have changed. Careers, children, complex issues have entered the scene and we feel we are no longer who we were. However, what we don’t realize is that those abilities are still within us and can be brought back to the surface if we are willing to try. But we have to be prepared to enter the cold, unfamiliar water and push through those first freezing, paralyzing steps.

So much potential lies within us but we have to be willing to step out of our comfort zone, push past the initial freeze and just keep moving towards what may well end up bringing us incredible satisfaction and even delight.

MY PERSONAL PERSPECTIVE OF LIVING WITH AN INVISIBLE DISABILITY

I am at an extremely fortunate point in my journey where I have no visible evidence that I have a disability. There is a flipside to this, though.

After my 6 lots of neurosurgery in 8 days in 2000 I was left with several problems that nobody could see. I was left with many issues with my brain function, some mental health issues, and many physical problems – namely chronic pain throughout my body. But none of these could be seen and to this day none of my health problems and physical challenges are visible. This is an incredible blessing on the one hand, but causes me extreme frustration on the other.

From January 2005 I started using TENS (Transcutaneous Electrical Nerve Stimulation) machines to help reduce the amount of pain I was in. I began just using the electrodes on my back where the only thing that could be seen was a small (6cm x 9.5cm x 2.5cm) machine hanging around my neck. An extremely dear friend got the measurements of the machine and his grandmother hand-beaded an exquisite little bag to hang around my neck that concealed the machine. This reduced the amount of double takes from people and they didn’t really bother me.

In early 2008 when my pain condition progressed to my hands and forearms I started using electrodes on my arms. The electrical current going into my arms enabled me to feed myself, handwrite and drive more easily. Unfortunately it also meant that I had something obviously out of the ordinary that was often stared at. Having to use electrodes on my arms I needed to use a 2^nd TENS machine – so had another machine hanging around my neck.

My mother very kindly made me two black velvet bags to conceal the machines. But in the summer there was no way of concealing the 5x5cm electrodes, and wires coming out of them, on my arms. Herein began my getting not just double-takes, but absolute stares. My way of combating this was to wear sunglasses, even inside shops – they meant that I could just stride past people when they stared and they couldn’t catch my eye.

In 2009 my pain condition progressed to my legs and feet and I began also using the TENS machine on my legs around the knee area. This meant that in summer I was looking very ‘wired up’ and there was now clearly something abnormal in my appearance. Most people just stared, but other people felt compelled to comment on them and ask questions.

There were many humorous scenarios that friends and family members suggested for me to say, such as that I was being tracked by satellite, or that I was on home detention and that this was the latest way the police could keep track of me. However comments about my appearance were usually made when I was at my weakest and least felt like talking about it. People’s comments were also always in public places, such as in queues at the supermarket, when I didn’t want to go into my medical situation.

One Saturday I accidentally left my sunglasses in a changing room of a clothing store. I went to the supermarket after this shop and found that people weren’t just staring at my electrodes but would then catch my eye and stare at me. This happened time and time again in the 5 minutes I was in the shop - I found it so upsetting that I burst into tears when I got into the car. I bought new sunglasses the next day.

In August 2010 I had to stop using the TENS machines. Because of the severe itching reaction my body was having to the stimulation and the tape that held the electrodes in place. Even though this led to a significant increase in my pain levels, it also led to a huge amount of freedom. When Spring came, and shorter sleeved and legged clothing, I felt so incredibly free. Free from stares, free from unwanted questions, and free to have it appear as though I was normal. But what it didn’t free me from was the reality of the pain.

Not using the TENS meant that I no longer had anything that might indicate to people, even my close friends and extended family, that I was in a lot of pain. I had chosen a long time before then to not show in my expression that I was in pain. If I was to show it I would continually be around with a pained look on my face, and what would be the point in that? And who would want to spend the rest of their life looking miserable?

As I said earlier, there is a flipside to having an invisible disability. There is no doubt that it is an incredible blessing that with every appointment I have had with my specialists in the past 12 or so months they have all said “you are looking so good!”  There were many years where I was ‘inflated’ on steroids, and I couldn’t even concentrate my vision on the specialist let alone hold a conversation. But I have had to say, and at times persuade, many of them that in spite of my looking good, I am going through physical misery every day.

Unfortunately it’s not only people that don’t know me well that don’t seem to realize that there is so much more going on than what is visible. Some of my friends, who I don’t see in person on a regular basis, have also struggled to come to grips with it. People who don’t understand my everyday reality may not appreciate that I am not choosing to not help with meal preparation or offering to help cleaning up, but that I actually can’t stand still for more than about 30 seconds before intense back pain kicks in and it is painful to use my hands for anything.

On a different front, my short term memory problems and extreme levels of fatigue have been something that I’ve struggled with since all my surgery in 2000. These restrict my ability to retain things and concentrate. It can be hard to get people to understand the extent of these issues when I now look so ‘normal’.

It is also hard for people to understand when my morale is low that this is more than likely as a result of being in a lot of pain and being exhausted from it.

I have found it especially difficult when I have to deal with agencies in relation to my disability. I look like a fit, healthy person who should be out there working and earning a living. This perception is so very different to my reality though, and even with medical documentation stating that my pain is going to be here permanently, I have had to go to great lengths to persuade them that I even have pain.

Now I am not writing this blog trying to get sympathy, or even worse pity. I am rather trying to express my frustrations and my experiences.

A sad reality is that I am far from alone in my experiences. There are many people the world over who live with horrendous invisible disabilities. Cancer, pain, neurological complications, through to mental illnesses and various forms of fatigue disorders; these are problems that are faced by people throughout the world every day.

Just because they have no visible evidence, this does not alter the invisible suffering many people endure. Perhaps we should be more understanding and believing of people who talk about pain that we cannot see.