Friday, 29 January 2016

The courage to continue the daily fight in chronic illness and disability...

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There is an old saying I am often reminded of since living with chronic illness. That phrase being, 'your struggle today is your strength tomorrow'. Whilst I believe that the statement in question can be very true for some occurrences in life, unfortunately strength does not always seem to swoop in on auto pilot when living the lifestyle of someone with chronic illness. A chronic, incurable illness can leave you feeling broken, tired, concerned, abnormal, vacant and not quite human. Take in to consideration having more than one and you can see the problem for many in this situation. There are times where you feel like a robot who just has to abide with the pain your body insists upon imprinting on your day. You are left in intense pain from doing absolutely nothing the majority of the time and this can leave you feeling like a prisoner to pain. You yearn for more yet are persistently confined to bed. You are presented symptoms despite trying not to anger your body and your failing, ill health. I am not a person who feels strong in many ways, I don't really acknowledge it often despite seeing it in others. Many believe that those in chronic pain ultimatley must be strong in order to live with pain on a long term scale. I have just always seen it as coping because it is the only choice we are given, not necessarily as strength.

When I thought about it, inner strength, whether we are aware of its presence or not is something we obviously depend on in great amounts to get us through our week. Yet there has been hundreds of occasions over my decade of being chronically ill, which for the most part has been spent housebound, that I've just wanted to throw in the towel and give up. I know I am definitely not alone in that predicament however. In a silly way, I often quitely suggest to myself that if my health has given up on me, then what is stopping me from following suit. It's a silly way to think as it can unfortunately turn you towards that hopeless mindset, however I would be fibbing if I said I had not questioned it at times. Giving up is the easy part, it's the turmoil you are left with that is abrupt in its nature. Attempting to survive daily life with an abundance of illness can cause you to lose great sight of hope or even the prospect of a future that is not contaminated by poor health and its reflective lifestyle. 

As much as I tell myself to focus on the good, focus on my strengths and what I have now, it is a lifestyle where every minute of everyday you are reminded of your illness. You move slightly only to throb, you use mobility aids day in day out, you are bedbound because of your health issues, you have constant medications to take that your body does not absorb correctly, you have joints to strap, dislocations to put back in, symptoms neither yourself nor your medication can control. Your life becomes a reflection of your chronic disease. It's a balance and a half to feel human and not just some robot, only programmed to be consumed by multiple, overlapping chronic illnesses.

When you live with a rare incurable illness, you feel like you are continuously revisiting parts of your life. Although you are faced with many new hurdles to cross, you are frequently reminded of the every day struggles too. Struggles many would not categorise as even being one. You are left stumped when it comes to progression in the grand scheme of things and your overall outlook of the future turns to sheer panic more often than not. It begins to feel like you are on a constant treadmill of worry, concern, fear, positivity, negativity without reaping particularly joyful benefits as often as you wish to. In being faced with so many reoccurring themes within illness, you'd think it would become second nature when they arise in your week or month. It is not always the case. Within a lot of things in life, time can be a great healer or perhaps accommodating. The longer I have lived with chronic illness, the more I have found myself questioning and trying to understand why so many live this lifestyle. Despite desperately yearning to break the recurring chain. I wonder why this has been my lifestyle for over a decade, one that everyday never ceases to amaze me in many ways. How there is nothing simple in the act of pushing through or attempting to do more, when you are consumed with multiple illnesses. I question how illnesses can be so persistent and disruptive of your lifestyle and how life can change dramatically when you lose your health.

Although the feelings do not upset me in ways like they once did, they can still feel repulsive to carry around or to grasp a concept or understanding of. Their disruption can feel startling and there are multiple times where I feel reflective, concerned, frustrated and hurt. Acceptance within day to day life is one thing, understanding this kind of lifestyle is another. Although I am aware that there really are no answers, I am human and some times, you wish you had those answers to bring you comfort within the slow progress of your life with a rare condition. You wish to know why these things happen and why you are given such circumstances. You want to know how it has happened and how life has seemed to collapsed before your eyes at such a young age. How can you reconnect yourself to life and how can you push through when compleltey and utterly dictated by a constant cycle of pain? That is the question I return to and often ponder upon.

Having a chronic illness and disability makes the fight even harder. The fight to live over existing. The fight to get through any big or small occasion, any social event and anything that can bring you great joy. There is always an obstacle lying in the way, usually in the large shape of an illness that in no way decreases or disappears for you to go about your business. Sometimes, you feel too weak to fight it and some days, you convince yourself that you can. Mostly for your sanity however. It is a struggle and I will never dispute that, if it was easy many of us would not be in the current situation we are. However we do not have much choice over our genetics or the fault within our bodies, so we can only get on with it day by day. That alone is not easy. It is hard to just accept these minimalistic, mundane circumstances. Some days it beats your down, other days you can try and adapt as well as you can. There are days where it feels like to much to be burdened with or as if nobody truly understands. There are other days where you understand the meaning of adaption within a disability and chronic illness. 

Some days I wake up and despite the pain, can remain positive, optimistic and hopeful. It is those kind of days that I absoltuely love and am constantly working to make the more frequent. They are desperately needed in a lifestyle where chronic illness is a persistent force. Those days can make me feel slightly more human rather than a mere diagnosis. In an ideal world, I hope to get to the stage where positive days are present more often than not. That would be more than ideal in terms of progression. I try to be quick to point out the positives in my life even when they seem difficult to seek, typically to count my blessings, emphasise on what I do have,what I currently can do despite how simple it may be and even acknowledging to feel lucky in ways that many in this world are not. Despite that positivity, I do often feel like I would have more to give and more to do if I had my health and was not disabled. I sadly feel not quite whole as a person, because of these illnesses. I feel like they are the deep root of my life. 

So as I write this post, it has been a reflection upon how I have been feeling over the last few weeks. I have highly doubted strength, even the smallest ounce and without this you usually end up feeling incredibly defeated. When pain levels reach maximum exposure and you struggle to handle this lifestyle, the fear that already exists in your mind becomes your worst enemy. It escalates, causing you to question almost everything from your present to your future, when really we don't know what tomorrow holds. I have become accepting in sensing it will most likely contain pain, but I don't know if that's the pessimistic side of me, continuing to not build my hopes up having lived in such a way for so long now. I have doubted hope, change, happiness. It does not seem very attainable within this lifestyle at times, despite many being living proof that it can be in things like jobs, relationships and social lives. Many of the positive anecdotes of hope and strength tend to feel non existent in long term illness. Where you are left feeling incredibly hopeless to your failing bodily structure. Strength never seems apparent on my lowest days because my pain feels like it defeats me, persistently putting me down. Yet it's there, in all of us. It is what keeps us going, fighting and breathing. It makes us try again even when we feel like it may be impossible. 

Life for anyone can feel apprehensive, we really do not know what the future has in store for any of us. Add pain to the equation in abundance and you really do live in constant fear of your future but ultimately, you cling to the smallest flame of hope. More often than not, that flame can die but something reignites the spark that you can cling to. I look towards the evolution of medicine, more people being diagnosed so the demand of treatment becoming higher, progressing towards the parts of life I desperately crave on a personal level and just holding out for happiness to return. Whilst I don't allow myself to be too hopeful, in ways such as making a full recovery from an incurable illness, I do hold out for control of the different symptoms. Whilst the concept of how long those aspects will possibly take to become attainable feels daunting, I try to push it aside when it feels too overwhelming. Along with pain, it will always attempt to be a main concern in this lifestyle. Along the way, you perhaps hit many brick walls that can deeply hurt you. This is inevitable because nothing is smooth sailing, especially in illness. However these occasions also add to your resilience. Fall down seven times, stand up eight as they say. I do not necessarily think this setback I have been feeling is a bad thing, it can be distressing but it can also prove I can slowly come out of the other side. I know to expect it's reoccurrence, yet I am also reassured these periods of time do not last so deeply forever. I accept that grieving and feeling defeated become two constant attributes in living with multiple, chronic illnesses. This time has allowed me to re evaluate my mindset and re adjust my sails to face the strong force of wind that is long term illness once again. 


  1. Hi Nancy,
    You are such a wonderful writer! I have been really blessed reading your blog!
    I have chronic eczema/itch this past year and have been taking (NB-UVB) light treatments to help me. It's been helping me! I'm thinking I was low in Vitamin D as well. I'm just wondering... do you feel better out in the sun?
    I'm sorry if this is a dumb question, but do you think being out in the sun more may help?? Increase Vitamin D, decrease pain / inflammation??

  2. Another great article. I wanted to share with you that when I became ill 8 years ago there was literally NOTHING to read about it online. Most of the doctors I went to had never heard of Dysautonomia, my main diagnosis. Many still do not.

    I had really given up hope and spent years shutting myself away until fairly recently. I got back online and I can not believe the strides medicine has made. I can not believe the connections I am able to make now with other chronic illness patients, many with the same conditions.

    The rate of change in the medical field is astounding. In a few short years it seems they have gone from 1 to 1,000,000,000 when it comes to diagnosing and treatments.

    I think it is so good you are sharing your story with others, it is inspirational. It gives hope to other people who also suffer. You are doing a great thing, even though you may not know it.

    I would love to link to your blog from mine as soon as I am strong enough to come out publicly as someone with a chronic illness. I have hidden it so long and am just now opening up. It is hard to put yourself out here in the stratosphere....