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The Invisible Fight of Invisible Illness

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Imagine walking down a busy street.  Look at the faces of the people walking past you in the street. Every one of those people will currently, or at some point in their history has faced a battle. One of them may be living with a battle that I currently face; a battle of living with an invisible illness.

Invisible Battles, Known Only To Those Fighting Them

Some of these battles may be visible, detectable to others, eliciting empathy and compassion.  Other conflicts, however, are invisible; concealed from everyone else, like a deeply hidden secret – a struggle known only by the person carrying the burden of the fight.

There are so many fights when living with an invisible illness
Be kind; for everyone you meet is fighting a hard battle.

I am one of those people who is fighting an unseen, invisible fight.  If you were to see me, you would never know that I have a neurological condition — the only signs being when I am staggering along with my crutch.  Or on the days where weak legs confine me to the use of a wheelchair, even then I am met with stares silently asking why I need such aids.

"I am one of those people who is fighting an unseen, invisible fight—an invisible battle of living with an invisible illness." Share on X

For Me It is Not An Invisible Illness, It Is My Life

The personal fight I face as a result of my neurological condition although may not be visible to others, for me, however, is very real.  For me, it is not an invisible illness; it is my life.  Every step is a struggle, with legs trembling so much that it feels as if they will buckle, although no one can see.  For others, the world is still, unmoving.

The world in my experience, however, seems off-balance. As though everything is slightly tilted. At other times it seems as if there is constant motion.  Every day I fight against fatigue and for the ability to do everything that everyone often takes for granted. Such as being able to go shopping, take a shower or cook a meal for the family.

"For me, it is not an invisible illness; it is my life." Share on X
Living with an invisible illness is often a balancing act between surrendering to our symptoms and fighting against them
“Living with an invisible illness is often a balancing act between surrendering to our symptoms and fighting against them.”

Every day is a battleground between myself and my body.  Like with any battles in history, there are times I am forced to surrender. Such as those days when my legs are so weak. Or the dizziness so severe that I am unable to get out of bed.  The days I am forced to surrender to my condition and stay confined to my bed.  That’s the thing about living with a chronic illness; it is often a balancing act between surrendering to our symptoms and fighting against them.

"Every day is a battleground between myself and my body." Share on X

The Fight Against The Assumptions of Others

It is not just the symptoms that we have to fight.  We also have to fight against the judgements of other people regarding our long-term health conditions.  At the start of our chronic illness journey, people greet our new circumstances with understanding and compassion, friends and family make allowances for our limitations.  As time passes, however, the understanding and compassion dissipate, replaced with frustration.  Frustration at us still not being well enough to go out and take part in activities we used to before illness took over our lives.

The grievance at the chores still left untouched as illness still will not allow me to attend to them. My parents, although supportive and understanding will sometimes feel embittered at finding certain chores untouched. Some days have to be waived for a day on the sofa due to debilitating and unrelenting symptoms. And they are unaware of this as to look at me, you only see a healthy woman.

To Live With An Invisible Illness Instead of Surviving

It may seem that the neurological condition takes a significant amount of space in my life; it, however, does not own or control me.  Yes, it may borrow my life at times, restraining me to the four walls of this house I live in, but the condition does nor ever will take my entire life.  There are certain things that I am unable to do because of this condition. Particular baggage that it has created, but there are still plenty of other things that I can and have done that I can still do.

The Fight of Invisible Illness
A profound quote from Tangled!

This unseen condition may fight for control for every facet of my personal life.  Now, however, I have chosen to fight back. Although I have not won control for every area of my life, I have elected to manage aspects of my life that I do have control over.  I have chosen to live side by side with my condition instead of merely enduring life with it.

I choose to live rather than simply survive.

'Fight Song' is an empowering one for those living with invisible conditions
‘Fight Song’ is a song that is on my self-care playlist
"I have chosen to live side by side with my condition instead of merely enduring life with it." Share on X
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In Chronic Illness

30 Things About My Invisible Illness You May Not Know 2014…

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I originally completed the ’30 things you may not know…’ meme back in 2012.  However, I thought it might be fun to complete these 30 questions again, not only to meet new (and old!) fellow bloggers but to also see how my answers have changed during the past two years.  It is true that as my condition has progressed and am now have the need for mobility aids such as a crutch and sometimes a wheelchair, my condition it could be argued is no longer invisible.  To some extent this may be true, however, I have also found that when I do use these mobility aids I do so with suspicion from others because I look ‘fine’ and in their minds I have no need for such assistance.  It’s as if they are expecting someone with a legitimate illness or disability to have a specific mark, branding them as such.  It therefore does raise the question about what exactly defines an ‘invisible illness’ doesn’t it?

  1. The illness I live with is…
    A neurological condition known as a long-standing brain stem lesion, as well as spastic paraparesis.  However, there is some debate that there may be more going on and therefore am going through tests and seeing more consultants to determine this.
  2. I was diagnosed with it in the year…
    2010
  3. But I had symptoms since…
    As long as I can remember, I am certain that I have had the stiffness and weakness in the legs since birth but went undetected for so long because I hadn’t realised that there might be a problem with my legs as I never knew anything different!  The vertigo and dizziness started in early infancy also but the exact age I am unsure of but I was very young.
  4. The biggest adjustment I have had to make is…
    Accept the limitations regarding my mobility and accept my need for a wheelchair.  I am often incredibly stubborn and will refuse to use my wheelchair, and by the end of the day I am in a lot of pain as well as having trouble moving around because of severe weakness in the legs.
  5. Most people assume…
    That because I am able to stand and walk sometimes when I have the wheelchair then it must mean that I am faking it all for sympathy or because of laziness.  Many people need to learn that because a person uses a wheelchair does not automatically mean that they are entirely dependent on one.
  6. The hardest part about mornings are…
    It has to be getting up out of bed!  Fatigue is another symptom that I suffer as a result of my condition and therefore it is very difficult to get out of bed as I still feel so tired.
  7. My favourite medical TV show is…
    It’s still has to be Grey’s Anatomy, although I am also addicted to Private Practice!!
  8. A gadget I couldn’t live without is…
    This is a tough question as like most people I own several gadgets which are all so useful in my daily life living with chronic illness.  But having to choose just one I would have to say my smartphone (Samsung Galaxy Note 3) as I am able to do so much with it and can be with me wherever I go.  For instance, thanks to applications such as Facebook, Twitter, Instagram and Pinterest I can work on things related to my blog and keep in contact with fellow spoonies, which is fantastic on days which are struggle and need someone else to talk to.  More than this I can take photographs, be reminded to take medications on time, play games, watch videos or listen to music – generally be entertained and distracted from pain, dizziness, and life from a chronic illness in general!
  9. The hardest part about nights are…
    Trying to switch off from the pain and trembling that I experience in my legs due to the spastic paraparesis.  I often experience insomnia because of these symptoms and it’s even been known to wake me up!
  10. Each day I take __ pills and vitamins…
    9 pills
  11. Regarding alternative treatments I…
    Do not use any, as in my case the condition is not treatable even with conventional medical treatments, only can attempt to control the symptoms.  I did enjoy a lovely and relaxing massage whilst on holiday earlier this year which I did find help with the pain
  12. If I had to choose between an invisible illness or visible I would choose…
    An invisible illness could be more positive in the way that people are more likely to treat you as everyone else
  13. Regarding work and career…
    I would love to have a career and full-time job but often worry if anyone would hire me due to the amount of time that I am unwell and also would question if I could hold down a job due to my legs giving way a lot and the inability to stand for long.  Am also not allowed to drive due to the severity of the dizziness and vertigo, and public transport is not an option as it requires standing for a significant period of time
  14. People would be surprised to know…
    That despite living with a neurological condition and dealing with severe symptoms everyday that I still manage to be positive!  Many people expect me to be depressed because I am stuck inside of the house for most of my time, and so am surprised that I am positive and upbeat.  Also, a lot of people love my positivity board which contains letters from friends, cards and posters with positive quotes and photographs of happy memories, all of which help me stay positive.
  15. The hardest thing to accept about my new reality has been…
    I am not like everyone else my age and cannot achieve the milestones that I was once looking forward to, passing my driving test being one.  Another example, is going out at night with friends, which I am unable to do due to the weakness in my legs, as well as the intense fatigue I experience at night.  It has also been hard to accept that I may need to use a wheelchair as my legs keeps becoming worse over time.
  16. Something that I ever thought I could because of my illness which I did was…
    It has to be going on a cruise.  Not only did I think it was out of my reach due to the severity of the dizziness relating to my neurological condition, but also I never expected me to be able to handle it, but I did and looking back the holiday was a fantastic experience, and between you and me we have just booked to go on another one next year around the Canaries!
  17. The commercials about my illness…
    Are non-existent as the condition is rare.  In fact it is so rare that I haven’t met anyone else with the same condition.
  18. Something I really miss doing since I was diagnosed is…
    Going on shopping trips with my Mum to our local city centre (Cardiff).  Since my legs have become so much worse am unable to go as a lot of walking is involved as well as not being able to queue in the big department stores as my legs often give way.  Also, large cities such as Cardiff can be very difficult for me to handle because of the dizziness, as it makes me very disoriented due to the large crowds, fluorescent lights in the shops and high ceilings and so on.
  19. It was really hard to have to give up…
    Doing all the exercise that I enjoyed such as going on my exercise bike or going on walks as not only is it beneficial physically, I often found it helped with mental well-being.  I also miss walking my dog as it’s something that both her and my Mum and I enjoyed doing together.
  20. A new hobby I have taken up since my diagnosis is…
    Blogging and writing.  If I had not ben diagnosed with this neurological condition then I would never have started blogging or meeting all of the wonderful people I have as a result of my writing.  I also never would have had the opportunity to contribute to the inspiring digital magazine ‘The Pillow Fort Magazine’ especially for those battling with chronic conditions.
  21. If I could have one of feeling normal again I would…
    Spend the whole day out of the house with dinner afterwards and maybe headed to a party after that!
  22. My illness has taught me…
    To listen to my body, and that we all know when there is something wrong.  To never settle when doctor’s are telling you there is nothing wrong when you know there is.  To keep moving forward and to never give up until you find a doctor that will listen and is determined to find out what is wrong.
  23. Want to know a secret? One thing people say that really gets under my skin is…
    “There are people much worse off than you”.  Yes, I understand this but it still doesn’t help!!
  24. But I love it when people…
         Listen to me and tried to understand even though it can be difficult due to the unpredictable and unusual nature of the illness.
  25. My favourite motto, scripture, quote that gets me through tough times is…
    It has to be “Life isn’t about waiting for the storm to pass but learning to dance in the rain”
  26. When someone is diagnosed I’d like to tell them…
    It is not the end.  You still have a lot to offer just need to be open to new opportunities.  You need to find a new normal instead of focusing on the past and everything that once loved doing but can no longer do.
  27. Something that has surprised me about living with an illness is…
    Although that I do not know anyone else with the exact same condition, I am still not alone.  There are many other people who experience the same struggles as myself and whom I can learn from and can support each other through the tough times.
  28. The nicest thing that someone did for me when I wasn’t feeling well was…
    Sending me a care package with things that I love and a beautiful card to add to my positivity board
  29. I’m involved with ‘Invisible Illness Week‘ because…
    To spread awareness of the difficulties faced when living with a chronic invisible illness; to educate people that although you cannot see the problem does not mean that it doesn’t exist.  That people with invisible illnesses are not faking or are lazy and that we should be careful when making snap judgements about people.  It’s a cliché but it’s true: ‘You cannot judge a book by its cover”.  It would also be nice to connect with others living with invisible illnesses like myself for support and friendship.
  30. The fact that you read this list makes me feel…
    I feel validated and supported so thank you!!
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The one important component to survive a life with an invisible illness…

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Imagine you are a marathon runner, struggling at the half-way mark. You are fatigued, suffering from muscle cramps and out of breath. However, you are determined to complete the marathon and cross the finish line.

So, what spurs you onto the finish the marathon despite the pain and fatigue?  I can imagine that one thought that would help is to know that the end is in sight and awareness that the pain and fatigue will eventually end.

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Unlike marathon runners, for those living with chronic illness, there is no end in sight of the pain and fatigue that we endure

Life with an invisible chronic condition, however, is in no way alike to the marathon analogy above.  There is no knowledge that pain, fatigue or other symptoms will end when living with a chronic illness.  There is no finish line when living with an invisible chronic illness.  The question, therefore is if we do not know when the pain, fatigue or other symptoms that torments us will end then what help us get through our lives with a chronic illness?

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In my opinion, one crucial component of surviving life with a chronic illness is hope.

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Hope that despite living with debilitating and life-altering symptoms, that we can still lead a ‘normal’ and happy life.

Hope that the symptoms will eventually ease.  Hope that one day there may be even a cure.

For those living with an invisible chronic illness, the hope that they will be believed and taking seriously as many as of you will have experienced; many are disbelieving of any disabilities or conditions because there are no outward signs of there being anything wrong.

The hope that everything will be OK.

Hope is essential for every person, but perhaps it is more necessary for those battling chronic illnesses as it is vital for pulling us out of the deep trenches of pain, hurt and depression that living with an illness can cause.

Hope motivates us to push forward and to keep thriving through even the difficult times.  In my experience, when my symptoms are particularly severe and perhaps am stuck in bed because I am unable to get out due to weakness, it can help therefore to believe that tomorrow will be a better day.  Maintaining hope during hardships can make it slightly less difficult to bear.

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Before the diagnosis of a chronic illness, we have hope for the future and the plans we create because the possibilities that are ahead of us are endless.  However, after a diagnosis of a chronic illness, there is suddenly a huge question mark over our futures and the possibilities we envisioned for ourselves.

The future is uncertain.  Due to the uncertainty of the future, our faith waivers.  How do we maintain hope when the life we had known has suddenly changed?  How do we continue to hope when we experience more bad days than good?

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The truth is that each moment we are in chronic pain or affected by the symptoms associated with our chronic illness, we choose our attitude towards it.

Ergo, we can choose to be negative and resentful towards our situation. Or we can choose hope and positivity.

I often used to focus on all the ways that my neurological condition limited my life.

Instead of focusing on everything that I am still able to do, I instead focused on the things that I was now unable to do.

This type of cognitive thinking not only can lead to depression and anxiety but can also make you feel inferior to your peers.

Now, I try and focus on everything that I am still able to do, and especially those that give me joy and happiness.

It instills me with hope as well as the reminder that despite the limitations placed upon my life, that I still have things to offer the world.

Anyone reading this who is is living with a chronic illness, know that you still have something to offer and have lots that you are still able to do despite there being things that you can no longer to do.

Illness is hard; there is no doubt about it.  From my experience, I know that trying to maintain hope can be extremely difficult as sometimes it can feel that there is nothing to be hopeful for.

But there are things out there that can be healing; things that can make you feel hope still exists even through the darkest of times.

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Simple pleasures every day can help alleviate suffering from pain, nausea or fatigue.

These little delights do not have to be expensive or grandiose but can be found in the simplest of things, such as watching a favourite comedy, enjoying a cup of your favourite tea, hugging a pet or listening to a favourite album.  Whatever works for you.

Try writing your favourite things down in a notebook; often when living with illness we can forget, and reminding ourselves of the fun activities we enjoy can help bring joy and hope.

To conclude, hope is just one of the components to be able to survive life with chronic illness.

Hope is the line between living a happy life despite chronic illness or being consumed by the negativity that illness can create.

Allowing illness to consume our lives, and focusing on the limitations that it places upon us can, therefore, lead us to lose our identity to our conditions.

As the spiritual teacher Eckhart Tolle said: “As long as you make an identity for yourself out of pain, you cannot be free of it.”

By choosing hope, however, we can lead a productive life filled with the pleasures that heal us and brings us joy and free from pain.

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