Seeking a positive mindset & outlook in chronic illness...

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My blog focuses on personal experiences that I feel or have felt within my illness and disability, in order to give other sufferers and non sufferers an insight into this kind of life. It's also to potentially look back upon in a few years time and realise what I have learned, if I have progressed and to just remind myself of all of the topics I have spoken about, if they reoccur in my life. As much as I firmly believe in highlighting and revisiting the difficult, emotional and tough aspects that many of us find hard to speak of within illness and disability, it doesn't mean my overall aim is to reach positivity within my situation. In the most non cliché way possible, everyday can feel like a survival when you live with a chronic illness. Whether that be against your body, your mindset or against your current circumstances. Like I always say, this process has always and will always continue to teach me a lot along the way, which I am grateful for, come rain or shine.

Now I'm not the best candidate for someone who accepts or grasps positivity easily, so this isn't a preaching post by any means. Had you asked me two years ago to try and remain positive and optimistic in my situation, steam probably would have come out of my ears. I despised the words, it lacked any kind of meaning to me. On an incredibly bad day, the more someone might tell me to be positive about my situation, the more confused, angry or rebellious I feel at times. Comments like such can sometimes get my back up when I feel little meaning towards positivity, I often feel like expressing how they should try living like this and get back to me. At the end of the day, I know deep down that those delivering that comment are only trying to keep my spirits up. Allowing my circumstances to make me feel incredibly negative is only really going to hurt me on a personal and self critical level. I take a lot of convincing to often think positive about my own situations, or even look past and overcome negativity on a consistent level, but through gradual understanding of my circumstances, both personal and professional in chronic illness I have started to readjust my views.

I am notorious and so critical in myself for sometimes allowing my pain to make me think in a negative mindset. Like anyone in these circumstances, sometimes it is inevitable to stop yourself from feeling down, whilst coping with pain. My thought process can often implode and spirals to create and imagine the worst circumstances and life possible for my future in disability. Why I allow myself to get to that place, I don't know but it does happen. It seems so silly and irrational in hindsight. It's even more alarming that chronic pain can often cause an individual to feel such despair. For possibly a year now, I have been trying to adapt my attitude towards living and coping with a long term, chronic illness. I believe that is potentially going to be one of my most beneficial tools in living with a long term, incurable illness.

Once I started to realise that the most beneficial tool I had was my mind, I started to really adjust my doubts against the concept of positivity. It seemed like a case of the best things in life are free, my mind being one of those. Only I had the power to use this tool and only I, could change my general outlook on the situations, thrown my way. Within this mindset, I have my faults and weaknesses, my strengths and triumphs and also some setbacks. I personally see this process as a full circle. Every time I get back to the start, the circle slightly gets smaller by a few millimetres and I start the process again. I can have the worst couple of days and then slowly start to find my feet again. Sometimes these better mindset days can last for a day or half longer than before too. I try to sit with the collected thoughts or mood I am feeling, understand why I am potentially feeling this way and attempt to accept it for what it is, hour to hour. Sometimes, we confuse pushing away our problems with positivity. There can be some days you will be consumed by negativity because of your reality with illness and that is fine. It's not a nice feeling but we shouldn't harshly punish ourselves for feeling this way. Typically, that 'baggage' that we feel we are carrying will possibly always be around within our circumstances in illness.

I am not somebody who remains happy and uplifted with ease. However, I think that would be a different story if I was healthy. I get low more frequent than I am high. I am tough on myself more than I give myself praise. I am human and quite frankly, do not go around with a smile plastered on my face with a happy go lucky attitude aiming to be inspiring or upbeat. I think very few of us do. We are not robots programmed to remain consistent with lack of growth, change or elements to build upon our character. We all have our worries, stresses and concerns. Strangely, when it comes to others I am a cheerleader in positive thinking. Realistically, I should probably take some of my own advice at times, but we can often be our own worst enemies.

I re analyse and revisit a lot of my own struggles within illness to help raise awareness. I think it is incredibly important to continue to make others aware of all that comes when faced with the adversity of illness or disability, at any age. Yet I also want to move forward and I hope I can move forward eventually, whilst putting this mindset into practise on a daily basis. There are still many areas within my life where I still momentously lack in positivity and optimism. Like anyone, I hope to be proven wrong in the near future but some days I convince myself otherwise. These are days where I find it hard to locate hope, faith and convince myself that they just can't exist. We are all guilty of these feelings.

Some people have positivity set in motion from a young age, whereas others are advocates in believing that it is the best way to live life and force themselves to practice positivity daily. Everyone deals with their outlook on a range or scheme of things, differently. People take on different methods constantly and some are willing to be more open minded and change their thinking habits. For some, these can be hopes of their outlook of life maybe looking better in a couple of days. It's whatever suits the individual. Then there's the pessimists and optimist viewpoint. Ideally, we would all benefit from have a more optimistic viewpoint of difficult situations in life, yet the chances are, we fall into the pessimist category within circumstances we find discouraging. There are so many attributes that overall can effect taking steps towards a positive mindset. Remaining in a negative mindset can stem from so many things, including anxiety, worrying, stress and depression. It's a given that feelings of anxiety, depression or nerves are never going to be completely resolved just by having a positive mindset, but it can become a beneficial tool to help you get through the lower moments that have the possibility to arise within your situation.

Do I find it hard to find a positive in situations to do with my chronic illnesses and disability? Incredibly! Am I aware that for my own sake, I need to keep attempting this practise of thought and positive attitude? Absolutely! I think that when an illness is confirmed to be long term, you have to look towards your mentality in how you are going to cope. You can just give up, or you can try to accept the circumstances for what they are and battle through each day in the best way you can. It has become a necessity to focus on at least one aspect of positivity during my day to often get me through. On my good and bad days, whatever I feel I can't handle, perspective in any situation I face, rational thinking and any small aspect of hope within positivity is what I try to cling to and switch my focus towards. It is not always easy, yet it gets me through the day.

I had to really stop and identify my thinking habits, therefore realising just how negative I was constantly allowing myself to become through my illness. The more negative I think, the more depressed I am about my reality. These negatives arises in issues such as doubting myself before I had even tried, thinking directly of the bad rather than the good, believing something was unattainable and predicting the worse outcome of any situation. I have always been an over thinker, achiever, worrier and analyser. This can therefore make my anxiety and million times worse than what originated the positive concept towards a promising change, in the first place. It's a draining process and it makes a day feel more than miserable, pointless, unfair and bleak when faced with a disabling illness.

You only have to ask your parent, guardian or loved one how desperate they are to help you, to ease your pain and desperate for you to try any remedy, outlet or possibility of improving your health. Unfortunately, not all of these outlets of seeking help are successful. Some are short lived and others take no effect at all. I have been chronically ill for many years and my mum has spent an absolute fortune picking up help outlets, such as self help books to hypnotherapy CDs, anything to just try to help me get in a stronger mindset to cope with a life long condition, which I am so grateful for. However, sometimes it just boils down to finding the strength within yourself. 

My older cousin has fibromyalgia, and even throughout her years of diagnosis, I would be puzzled by how on earth she could still be so positive,optimistic and calm despite her obstacles within her chronic illness. My cousin to me is so brave and so beautiful within her pain, I have learnt so much from her and I am grateful we have each other to share a similar journey with. The positivity and vibe she presented to me may have possibly been a huge front on her behalf, but over time, it has made me take a leaf out of her book. At 17, I wasn't in the right head space to appreciate what she was telling me. My prejudgement of positivity was that I would never understand the concept of it within my circumstances, it didn't feel attainable and it never made sense to me. I had no self belief that it was a possible destination to reach in illness and disability. Everything felt like an incredible negative attribute to my life and one big headache. My cousin would buy me positivity books and tell me to keep my mind strong and I felt like she was sadly, in a losing battle with me. I appreciated her time, I just had no idea where she was coming from. I isolated myself even more, I locked myself away and I just grieved every day for the entire process of what my life had become. I struggled, I felt like I drowned within my life and I pushed the concept of positivity as far away as I could.

I didn't notice it instantly but something in the last year, just clicked. Now, I wouldn't say I've become a positive thinker through and through. I don't think anyone can truly live a day without having at least one negative thought. And quite frankly, we are all going to have a bad day once in a while. However, I now try to see a situation from one or two positive points of view. Sometimes, I cant find anything positive in the moment, but on analysis I can usually find something about the situation once it has passed. I waited an incredibly long time to grasp an understanding on positivity. Just to even give me more of an understanding of the concept and how I can take it forward to deal with my current situations in life. There can be days where you feel like you are breaking and other days where you just feel the smallest ounce of stability. A positive mindset becomes a choice that has to be made entirely by you. To get through each day, hour and possibly minute.

I'm not saying that I won't slip into old mindsets at certain points of the week, month or year. Some days, I ironically become the very appropriate, Negative Nancy! Dealing with a chronic illness for such a long time is starting to show me a difference in my mentality, it's eye opening how you can adapt a different attitude towards difficult circumstances. I often feel it has somewhat changed me as a person, not in my illness not in my pain levels, but in my approach of overwhelming issues within life with incurable illness. I have my down days but now I also have my better days where I have a stronger mindset  to help me cope. Which in itself, is an achievement I never thought would breakthrough for me.

It's a place I don't want to push to reach in a hurry, but I will make sure that eventually, I find a ratio where positivity is more common than negativity. There may be times where you feel this mantra has the potential to backfire, like anything in life, but I feel it will be personally better to try than to not. I think the concept of positivity has grown on me the more I accept that my illness and disability will be a long term issue to deal with. I truly admire people who keep a positive attitude within terrible situations. It's obviously not an easy task, but they prove it is possible with a bit of self belief.

Regardless of how I feel, whether that be incredibly low or clearer in my thoughts, I try with all of my might to seek perspective everyday. I have a daily battle of acknowledging that for every negative I may feel or think of, I must try to balance it out with a positive in order to gain a better perspective and clearer mindset. I realise why I am lucky compared to some, I acknowledge the thoughts that we are quick to forget (roof over my head, clothes, bed) and I think of how much worse my disability could potentially be. Realistically, I should probably start to quietly emphasise my positive days. Whether that be by noting it down on a calendar or just within myself, in order to realise it is a good progress, potentially a more frequent mindset and a step in the right direction in dealing with long term illness.

*DISCLAIMER* - The above is a collection of my own thoughts on how I personally think I can learn to live with a positive mindset. This is not professional advice nor is it suitable for everyone. It's just an expression on my own behalf.

Life on pause in chronic illness / disability. Will the stuck feeling always be here ?

One of the first blog posts I wrote on a similar topic to the below, was back in 2013. 'The stuck feeling' was a post I completed in under an hour. Ironic considering the topic name. The words came pouring out, I didn't seem to take a pause in expressing how I felt. Stuck is a word that often still comes into play daily in my current situation with disability and illness. It's a horrible, smothering feeling that you just desperately want to escape and run from. Feeling stuck becomes the blatant reality check of just how much life changes when you live with illness or disability.

Even in 2015, it's still a feeling that can overwhelm and shock me, as it has for many years now. Hope has been restored in the sense that I now know that lots of others in similar circumstances, often feel it too. Something I had no confirmation of, up until early 2014. This fact in itself has done me a lot of good and I try to remember this when difficult to think of the progression in the many different aspects of life. The stuck and trapped mentality rears its ugly head without warning, but especially when in an incredibly bad flare up. Living this life can make you feel like you are a car stuck in the mud or sinking in quicksand.

Like so many other people with chronic illness and disability, I find it hard to maintain a dependence on large amounts of positivity within my daily life. I understand that this 'stuck' feeling becomes a valid aspect in a continuous progression towards accepting and building upon my disabled reality. Low moments in my week or month tend to slightly positively push me in different ways, when I didn't think it was entirely possible, so in theory they becomes my silver lining. However, there are also a lot of incredibly difficult times where feeling stuck in my tracks often feels like it is taking over my life. I notice that my body seems to feel paralysed, my breathing shallow, my soul numb, my mood incredibly emotional and my movement weak in these despair moments, a huge reality check and emphasis on the 'stuck' feeling.

There is never a certain time period or obvious pattern that will pass and cause my stuck feeling to amplify. Sometimes it's how I feel in my day to day achievements, sometimes my hourly achievements and sometimes it just falls down to how I feel in myself and my disability. This surge of feeling rears it's ugly head in the moments where you want to think of your future, your present and sometimes even your past. Just feeling like you are stuck on a treadmill, at the same pace, living with same life because of chronic illness is something I have always found very difficult to process.

Many different people, from many walks of life, can feel stuck. Stuck in jobs they hate, stuck within their private lives, relationships, stuck in circumstances they wish they had the power to change or make better. All these kind of feelings and categories in which they appear in our lives are valid. They make us feel more than rubbish, drag us down and force us to see them in only a negative light. However, in chronic illness it's not just one particular aspect of life that you feel stuck in. It's an avalanche of aspects and sectors within your life that you have no idea how to move forward with. The reason being because chronic illness, pain and disability can cause attributes within your circumstance, that have the ability to consume your present. These factors seem to get in the way of and block your progression path a lot of the time, both physically and mentally, no matter how much you attempt to remain optimistic and positive.

The phrase I refer to a lot is 'life on pause'. Technically, nobody's life is truly on pause, unfortunately the human race does not have access to the nifty little gadget that features in the movie 'Click' just yet. I use this phrase in the sense that life, days, months and years can shockingly pass you by in chronic illness and disability. You can't physically leave behind or build steady blocks upon the one thing that drags you down everyday of your existence, pain. You feel trapped and controlled in so many aspects of your life caused by this powerful gremlin. The most common avenue everyone wants to take when they feel stuck is to try and change why they feel this way, which is irrelevant when it comes to a life with pain.

When you become housebound with a disability, your life seems to lack much structure. This forces you to imagine and think about what life could be like if health and physical abilities were on our side. It is cruel to do this to ourselves when we have an illness or disability, but we do it anyway. Only because we want better for ourselves, our present and our futures. There isn't harm in wanting to be a better person, feel happy and content in your circumstances. However, when you know the circumstances are not particularly 'normal', there has to be a line drawn where you need to stop being so hard on yourself. This is when being chronically ill and disabled makes you rely in large amounts on any ounce of positivity you can find within your circumstance, and most importantly a hell of a lot of patience.

No matter how positive you may want to think about your situation, when the sheer reality hits you that you have lived this life for so long, it becomes pretty hard to shake the feelings of how your current situation is making you feel. You feel as if you can't escape this lifestyle and convince yourself to an extent that you are certain it will become just like all the other years that have passed by. Will I always feel this trapped, stuck and depressed by my reality? Will I be able to grow in the ways I wish too? Illness and disability can cause you to think irrationally and have low expectations of yourself. You feel numb, distressed, depressed, trapped, unhappy and emotional when dealing with these prospects in life.   

When progression seems to slack in your life you feel like you are stuck deep in a hole with the walls collapsing inwards on you. You feel stuck in more ways that one. There are many different circumstances in life with illness and disability, where I feel this way. Sometimes, they are easier to get through and other times, I am faced with new, unsuspecting challenges. Categories stem from feeling stuck from physical contact with others, where life is headed, what I would like to be achieving, anger at my current physical abilities, lack of progression, age-realisation, deteriorating health, hospital appointments and more. Stuck feelings can arise from how much I physically hope to gain from life, but not knowing if it will ever be entirely possible because of my disability and health issues. It also is a case of wanting to physically push myself as much as I can, but falling flat a lot of the time with a body that just can't cope.

Diverting your attention when bed bound or housebound is never an easy assignment. I feel a huge sense of despair and anger over wasted years being house bound, the loss of control of my happiness and so much more. There is nothing those with chronic illness want out of life more than normality and fulfilment on a level that is comforting. Personally, I feel normality could really relieve my 'stuck' factors, however I also know currently, there isn't a normality in my health circumstances. I would love to eventually seek my version of normality one day but for now, I can't control aspects of my pain or health. My symptoms and pain levels have the ability to change from hour to hour and for now, I can only focus on just getting myself through that.

Another prospect that can suddenly emphasise my 'stuck' feelings is realising I will possibly always be this ill, disabled or in this much pain. Whilst stuck in a low mindset, feeling hopeless and unfulfilled in aspects of my life. It's not the way I want to think or feel about life and only independently can I potentially pull myself out of those thinking patterns. I can work towards personal goals and although they may be at a slower pace than average, they are not impossible if I set my mind to the task at hand. I know that in being disabled, we are not supposed to put too much pressure on ourselves and our achievements. However, I also feel that selective goal setting is good for me, personally. I am far too hard on myself a lot of the time, yet I I also like to feel I am working towards something positive and worthwhile in my life with disability. Slow progress is better than no progress at all, as they say.

We are taught from a young age that anything is possible, I do truly believe that is so but its not to say that it will be an easy climb along the way, for anyone let alone those with a disability or illness. On days where I feel more positive, I am usually quite optimistic over this 'anything is possible' mantra. I can think clearer about just getting through and solely focusing on today. However this doesn't mean that the lower days, moments and thought patterns that stem from illness don't swoop in with angry impact, as and when they please.

In ways, so much has changed in my 'stuck feeling'. I am connecting with so many other young people online, all who live with disability or chronic illness. It's good that I acknowledge that aspect as it is something to feel positive about. However, physically in my situation, so much still remains the same, which at times can be incredibly disheartening. It can be so hard to battle through social isolation in chronic illness. My depression, sadness and anxiety come in bounds throughout the week because of my circumstances. My isolation levels feel incredibly overwhelming at this point too. I wish the simple answer of when these moments arise is to physically put myself in a situation where I am not isolated, yet it never feels that easy when living with pain. Pain has the ability to stop you from being able to integrate with others in times when you need to most. An aspect that makes illness even more cruel than it already is to anyone who suffers. It's those times I am especially grateful for my family, particularly my amazing Mum and Dad who would bend over backwards for me.

Being chronically ill is such a roller coaster. There are no magic words that can bring a person comfort when they ask themselves why they have been given a life of illness or disability. I am often guilty of pondering over why my life feels on pause. Will life get any better? Will I be able to achieve my goals, will I be happy enough? What steps do I take to get there? These thoughts and questions can swamp your mind when you are in a bad place with chronic illness, only because its a destination that you aim to reach fairly quickly. You are constantly wanting to better yourself but it can feel like the most cobbled path. I want to actually be a part of life, feeling free from illness and its chains like anyone else my age has the ability to live. Illness and this stuck feeling, often makes me feel like I don't have an established place in this world and it has done for many years.

When putting into perspective how many years I have been housebound, diagnosed and disabled, it shocks me with its considerably long time period. The only positive option you have when faced with the prospect of illness or disability is to cope. In your own way, with your own methods and on your own terms. It's a case of working with your disability when able to, whilst having as much patience as you can find within yourself. Life, whether we accept this or not always continues to carry on no matter what is thrown at us. The earth keeps on spinning, as they say. Days often feel so wasted just waiting for pain to pass. It's not even pain you can work through otherwise trust me, I speak on behalf of everyone in saying we would push through. No one chooses to live a housebound life. No one choose the sadness or despair that comes with a chronic illness.

As sad of a life illness or disability can be, it wont hopefully always feel this way. Life may become brighter, hopeful and enjoyable. Illness is one of those sink or swim moments. Except deep down, we all know there is only one choice and that is to keep swimming, even when the tide feels too over whelming. It's not easy at all to accept this being so young, I found it hard in my teens and I find it hard as an adult. I find myself in despair over this way of life more often than not, but the bottom line is, it is what it is, nothing can change the diagnosis.

I have tried to become more forceful in my abilities, when feeling stuck. There are so many days in a month where physically, my disability and pain feel incredibly over powering and in control. Which to a daily extent, they are. It is not easy to achieve on a day to day basis when in so much physical pain. Not only is it physical, it's usually mentally draining too. When I feel stuck and cooped up, I attempt to take the reins on controlling an ounce of my happiness to make myself feel free of what is trapping me. This is to prove to myself, that even when I feel like I can't, I can. Now I must admit, these small things don't bring me great joy whatsoever, it just feels like a valid necessity that is needed to feel like I am a part of the world and not just fading into the obscurity of my home, away from every ounce of life and living.

I have been trying to become more aware of when I tend to focus too much on this 'stuck' predicament. Ultimately, it is a case of becoming accepting of your current reality, being hopeful that your future can become better yet also being balanced with wanting to fight for a current, fulfilling purpose in your life. It's not fair to allow the circumstances that feel out of your hands, to have the ability to let your life pass you by. Every day is special and every day counts. Every day gives us the chance to change small aspects of our routine, every day is a new possibility for things to fall into place.

It's a struggle to remind yourself to not get continuously caught up in that smothering 'stuck' feeling. It is purely punishing yourself, whilst tending to leave a negative cloud over your current abilities within disability and illness. These abilities are things in which we should be proud of, regardless of the circumstances. We all know just how difficult the smallest tasks and aspects of daily life become. We are angry at this thought in itself but we need to accept it for what it is. Anger towards situations out of our control usually takes more energy than just getting through today.

Defined by your disability? When chronic illness feels like it steals your identity....

image: Tumblr via Google Images

                                   

Some say what we go through in life has the ability to change our existence entirely. Sometimes, these momentous occasions are triumphant and positive. Other times, they are some of the toughest experiences a person has to get through and face head on. These moments can be short lived or linger in our lives for longer than expected. Ultimately, it is always up to an individual to decide in which category they have fallen into during any selective time period in their life. Sometimes little aspects can really distress us and other times it's the bigger aspects that truly rattle us. We all have a subconscious scale of what we find challenging as individuals in comparison to each other. One thing we all have in common in these moments, is that we are not told how to prepare mentally for these kind of arising challenges. 

These occasions have the ability to change you for the better but they also have the ability to shake things up in your life, leave you in distress, implement future worries and cause you to face a new reality. They can damage your confidence, change your personality and hinder your growth. This might not be obvious to everyone initially or even at all. I know from personal experience, that deep down, after a long time of living a certain way, a drastic change in life can sometimes make you focus on the negatives. It can rob you of your character and leave you feeling empty inside. However, despite these challenges, we always learn along the way. 

Up until quite recently, I would always state that I felt like I had lost my identity at 14 years old. The time where in my eyes, my life went on pause. My health was slowly deteriorating and I had no control over this aspect of my life. Health has always been wealth to me. Although I am very aware that with each passing day, we grow a day older and hopefully a day wiser, there are a majority of days in the week where I still can't find the correct tools and avenues to rediscover my identity. The thing that should be separate to my illness. I sometimes make the mistake of defining myself with my illness, it shouldn't be the case, but sometimes it hard to forget that we are still human underneath the exterior of a disability. I know that if someone who had an illness or disability expressed that comment to me, I would quickly point out all that I see in that person. Their personality probably being the focus, I'm sure illness wouldn't be the first thing that would even come to my mind. 

Living with chronic illness has been something I have faced for many years now. In all honesty, I often feel like the last time I truly 'lived' was before my teens. The fact I am only 21 is the bittersweet issue within that prospect. Disability and illness can take away the joy of life for some of us. We then find it hard to get back on our feet and heading in a direction we are happy with. The adversity of disability was something I never expected. I have always been a firm believer in accepting that what we go through in life, shapes us into who we become. I accept that process, but it doesn't mean I am always happy and welcoming of it. Ultimately, I am always optimistic that what happens is for hopefully a reason. 

How do we separate ourselves from our disabilities when they seem to have so much physical power and control? Your previous lifestyle is slowly but surely replaced with a pace in co operation to your disability. Your personality shifts with the adversity you face from your new found reality and any hobbies, interests or personal traits seem to fall to on the back burner. You feel like with each passing day you slowly lose yourself to your disability. It has the ability to make you feel like it is all that makes you in life and sadly, all that your world has become revolved around. I am forgiving in knowing this isn't completely through my own fault, illness has just made me lose my way and forget to enjoy life. I don't find that admission shameful, I know its more than likely at least crossed one other persons mind that is potentially reading this. I just think its quite heartbreaking that an illness can make somebody feel this way. No matter their age, occupation or lifestyle. 

Chronic illness for an incredibly long time has made me feel like all I had to offer was the pain and sadness it brought to me on a daily basis. The chaos of loss, confusion, isolation and sadness replaced the girl who was once felt like she had a personality with a slight sparkle in her eye. Illness has consumed me for over a decade now and seems to be the whole reason I am who I am. There are times I question who I have become, why my life is this way, why do I have a disability or why can't I live a life I am content enough with. Nobody wants to be on this earth to suffer, nobody wants to feel like they watch the world behind a window pane. We all want the best quality and quantity of life for ourselves and our loved ones.

At some point during our journey with chronic illness, the majority of us would have felt the overwhelming, smothering feeling from the realisation that we will potentially always live a life like this. A life of possible longevity, but with chronic pain, illness or a long term disability. It is from that point forward that you just feel completely lost in yourself and everything you once knew or thought you knew. It all seems so far behind you. It's a reality check because life suddenly really does drastically change. Before you know it, everything else does too. Illness drastically changes you as a person, in both positive and negative ways. Illness and your new found reality implement fear, even if you are trying to make the best out of a bad situation. 

It is common in chronic illness to feel the loss of yourself, your life, your normality and your independence. It's a complex lifestyle to adjust to. The biggest personal issue for me has been losing myself, my path, my happiness. It's not something that gets easier with time, the longer I live with illness, sometimes it's this concept of 'time' that causes more pain and hurt in my heart. I find it hard to recall the things I enjoy or have the potential to enjoy. I find it hard to think of aspects that I like about myself or that people like about me. You feel like you died a long time ago and some rotten disability replaced you in the night. It feels like health issues have now replaced or consumed Nancy. When it's yourself it's always so much more difficult to overlook the positives and indulge your thoughts into the negatives. No matter how many times a person may try to elevate your abilities to look past the thing that is holding you back. Let's be honest, it's a fact that we are always within our own company. We are often too hard and critical on ourselves.

I always remember in the One Direction 'This Is Us' film, Harry Styles stated that he hated the word celebrity. He felt it was superficial and made him less of a person, a stigma almost. I felt comparison in this comment to how I feel about being disabled and chronically ill. Illness has taken over me to the point where it has almost become my identity. The first thing that comes to mind when I think of myself is my disability. The first thing that others become accustomed to making conversation about is my disability. Usually because work or social related activities are currently not present. Sadly, it currently feels like my defining moment to date and I'm not always sure how to feel about it.  We all have the ability to be defined or looked upon as something, however I always wanted something more positive. Not a word I relate to mostly negative connotations because of what it has brought into my world. I am hopeful in the future, I can find something much more positive to correspond with defining myself, my life and my achievements.

Sometimes living life with a chronic illness or disability doesn't feel like it's enough. 'There has got to be more to life than my reality', is something I am guilty of thinking of occasionally. Lack of excitement, lack of joy mixed with goals we are desperate to seek within chronic illness amplify this feeling. Our days can feel empty and less sufficient than the average.  I would much rather a job be the most consistent thing in my life but I'm working with it. There are going to be so many days where you highly doubt your existence when it comes to illness, you can often feel like you waste your days just procrastinating in bed. Your purpose feels hard to search for. I feel so boring because I am housebound, if someone was to ask my what I like to do for fun, my mind usually goes blank. Fun? Does that word even exist in my dictionary. Not since I have become housebound and disabled, that's for sure.

You find yourself searching for the answers of what once filled you with happiness or even an escape from your everyday troubles. At times, these old things are difficult to attain in your present because they are no longer disabled or chronic illness friendly. Your physical limits have the final say on a lot of your challenges. Then you reach a dead end in hope. I know that there are multiple enjoyments in this world for people to continuously try and take part in, but when you live in pain, you lack the ability to want to try. Not because you are lazy, because you are drained, in pain and suffering.

I do however believe, there is always a positive, in any situation that you deem bad. Even if it takes you a good while to convince yourself of it. Although sometimes you may be drained by the process of what you are going through, these arising moments of our existence can also prove that you do have the ability to get through whatever life may throw your way.  It's not always easy, it's not always fair, it doesn't always make any sense but it is the present and it's all we have to work with. 

It becomes a case of remembering the aspects of life that are personal to you and not dictated by your pain, your disability, your health or your illness. Sometimes, I do find this aspect really difficult. What makes you, you? Try to forget the more obvious aspects that your illness controls. What do you enjoy? What makes you laugh? What is your style? What is your guilty pleasure? What is your movie genre of choice? Who's you favourite artist? What's you biggest dream? Who is your role model? What would you do for fun? There is always something you feel passionate about. There is always a quirk within your personality that others and yourself will eventually be able to see.

It's not always a simple task trying to recall who you once were before you became chronically ill. Illness has the ability to flip your world upside down when least expect it. It doesn't discriminate, it just happens. Chronic illness will impact your life for better and for worse. Things such as your personality, patience and your outlook change with each passing day. It's not a bad thing, it usually makes people have a greater understanding of what's important in life. 

Life always carries on, sometimes you are so caught up in your disability that many aspects of your life and personality dwindle away. It's not all negative. In the attributes I feel I have lost within myself, I have also gained in other ways. I am grateful for the positive personality aspects that illness has brought into my life. However, it's the darker and lower aspects that are more apparent and intense when you live with chronic illness. I can't stand and at times, can't cope with the isolation, the social anxiety, the fear of coping, the depression or the knock in confidence it has implemented into my daily life. 

On reflection, sometimes I wake up and instantly feel disabled. It's how I then personally define this whole day, which usually turns out rubbish because I let my disability win. In reality, I should accept this day for what it is and cope with the present. One of my strong points is that mentally, I don't often feel disabled. I feel like this is both a positive and a negative attribute of my thoughts. The negative being that I am not fully accepting my situation, lifestyle and physical weakness. The positive being that, as long as I continue to think this way, I won't be allow myself to wallow in self pity. I will still be able to push myself and feel like my goals are still half attainable.

I am still the daughter that wants to make my parents proud, I am still the friend who will always be there when I am needed, I am still Nancy, I just have to cope with a disability and I will hopefully be able to do just that. I will find things I enjoy again, I will find my way in living life again and I will be try to be kind to myself and this process of acceptance. We can make terrible circumstances beautiful in their own way. It's not always welcomed or suitable, but you can only work with what you are given. Some of us were given a disability, we just can't allow it to continue to define us. You are the only person who can discover the attributes that make you unique, despite your disability.

I have only just started to realise and accept that I am so much more than the symptoms and attributes of my disability. I need to remind myself of this and everyone else that too, even on days where pain convinces you that you are less because of the adversity you may face. I've tried to turn the aspects of my illness that I can into a positive, I like that fact that I can share something in my own corner of the Internet and hope that someone out there takes some comfort from my words. I hope that my fears within my own illness can make others more accepting and willing to work through theirs. Illness has taught me so much and has been the most testing time in my life. Like I said, I always state that I just feel like an illness, I think what I mean to say is I've always lived with illness, other than family it has been the most consistent thing in my life.

There is so much that we dismiss when we live in a life with chronic illness that we forget the simple things that make us human. We are quick to forget the positives that others are quick to see, even if we can't. In rational hindsight, we are so much more than out disabilities. They are a huge part of our lives, but they were not born and presented to the world, we were. Although it often may make me feel this way, disability is not and will not be the most important part of me. I would be quick to point that out to someone else in similar circumstances. 

I challenge you to ask or text your loved ones or friends. What do they think your best qualities and attributes are as a person? How would they describe you? I would bet that 99% of the responses wouldn't even mention your disability. If the people that we love can easily and positively overlook our disabilities, why can't we be as kind to ourselves?

Chronic Teenage Tears is 2 - Friends, Growth & Life....

Image: lovethispic

I can't quite believe I am sitting here writing my blogs 2 year 'birthday' post. Two and a half years ago, blogging about chronic illness had not even crossed my mind. I have read many beauty and lifestyle blogs in my time, but I never even thought about blogging about chronic illness. The origin of starting my blog stemmed from feeling severe isolation in my life after living with a chronic illness for all of my teenage years. I felt like I went from 13 years old to 50 in a short amount of time, rather than transforming from a young teen into a young adult. Every teenage typical 'normality' and 'lifestyle' could not have been further from my situation. July 2013, was a seriously testing time in my life. I could not understand how or why my life was turning out like it was and quite honestly, I felt at my wits end. There have been so many times in chronic illness that I have personally wanted to just give up, but this occasion in July 2013 really stands out.

Helpless, lost, frightened and so deeply depressed were basic foundations that made up my daily life at this point. I didn't want those attributes to make up every single day of my existence, let alone ever think they would be so reoccurring during my teenage years to present. I had lived chronically ill and housebound for 5 and a half years by age 19 and I was devastated. I never want to get to that place consistently, again. As long as I continue to push myself to help others and know that I may possibly get a response in return, or even be helping them in their own aspects of life with illness, I can't give up. Knowing the safety that blogging also gives me, in regards to realising just how many others live a life of similar circumstances is also a key to my survival within my life with chronic illness.

Nothing comprehends or prepares you for the isolation you feel when living with a chronic illness. Especially at a young age where a group of friends should be a consistent and positive thing. I wish I would've started this process long ago for what blogging has done for my mental state, however I am a firm believer in being in the right place at the right time. I can only hope that more of those occasions have the possibility to arise in my life during my future in blogging and personally too.

Something came over me in that really low moment in July 2013. Something forced me out of my comfort zone towards randomly starting a blog. Something instigated the necessity to reach out to others. It may have been desperation, it may have been rational thinking, it may have been a higher power. Who knows! All I know is that it has been one of the best forms of progression in acceptance for my mental health and growth in acceptance of a chronic illness. No matter how many times I may contemplate deleting this blog, usually from fear I am sharing too much, fear that I am being too honest or fear that strangers will potentially judge me on what I have written, I truly hope my words based upon fist hand experience can help someone who is in a similar situations. The fact that something so simple has been the key to connecting me with so many others with chronic illness, is something I will truly be forever grateful for.

Subconsciously, when I write my blog posts I write them in the context of almost coaching myself with what has been on my mind regarding illness. Sometimes it works in my favour and I feel good to get it off my chest, sometimes it makes me completely analyse the topic for days on end therefore making me feel worse about my current situation. But ultimately, it can also really help to push me towards taking small steps to try to better my life and current reality. So here is my two year look back. I often forget the things my blog has helped me to achieve until I see it on paper. 

I really can't believe in two years I have managed to gain over 30,000 page views on this blog. I am very aware of the fact that some bloggers can gain thousands in a day, but to me it's a sign that someone may be connecting with my own story and ultimately feel less alone in their own life. I remember the joy I felt at 100 views, my mum and I were so overwhelmed and ecstatic. I know that that chronic illness in young people isn't a subject that is deemed highly important (it should be) or something that may cross a mass of the populations mind on a daily basis. It's not an area many take expertise or take a solid interest in. Just knowing that a handful of people can connect to my own life with multiple diagnosis's and chronic illness is something I am always so quick to point out, because it truly means so much and has been one of my main factors in acceptance, help and growth as a person. Being chronically ill is a lifestyle in need of so much more awareness because it is sadly, a living reality to so many young people out there.

It almost frightens me that only two years ago, I didn't have the support and the gratitude of knowing the people I do today. My blog has connected me to I hope, many friends for life. These people not only understand my reality because so unfairly, it is also theirs, they just don't realise how special they are. It takes a special person to help you through your own day, hurdles and misfortune when they themselves are suffering too. They don't realise how many beautiful qualities illness brings out in them, their attentive care and wisdom. The support they provide from a distance is everything and more I could've hoped for in friendship. On a daily basis, they show me reasons of why I see past their illness and only see their strength and admiration. They have become people who I speak to daily and others who I catch up with during the week or month. No matter the time of day or night, someone is always there to speak to on any corner of the world, who can make me think more rationally and even just to let each other rant away about illness, isolation, pain. 

Not only has my blog allowed me to make such amazing friends, it has also allowed me the opportunity to meet them on this side of the ocean and the other. My family and I had the pleasure to meet the lovely Denise from 'Chronic Connection' in Orlando, Florida earlier this year for lunch. I have also had the pleasure of regularly meeting up with my lovely friend Lauren, who has become such a huge support of my process in accepting life with Ehlers Danlos. I hope to be able to eventually meet up with so many more blog friends who have been nothing but supportive in the near future.

I have a new found love for social media, it was something originally and still at times used to arise low and sad thoughts. I would constantly compare the parallel of my life to those who are healthy that I once went to school with. It made me anxious and depressed to the point where I stopped myself logging into private accounts. That was until I started my ChronicTeenageTears Twitter, Instagram and Facebook pages. I have been able to talk daily to people just like myself health wise and learn from their ways of living, acceptance, pain tips and just from their gratitude of life. They are often so positive, so supportive and as accepting as they can be with the cards they have been dealt in life. Like myself, they are just grateful to be talking to others in similar shoes and knowing they are not alone. At the current time of writing this have 1,265 Twitter followers, considering I have 55 on my private account, this is insane to think that many others are willing to follow my tweets.

A personal goal is that earlier this year, I started my second distance learning course in the field of media after feeling like I needed a new focus. I wanted to work towards a qualification but didn't want to jump straight into or commit to a degree just yet because of my health and pain levels. That is obviously, the ultimate goal but I am hoping to gradually get to that point within the next couple of years. I am now more determined and more certain in the subject field that I want to study and hope I can achieve all I have in mind. Although with most things in my life, I am far too hard on myself. I start at step one and want to be on step 10 by the end of the week. I like to see progress quickly, which is something I still find difficult in life with chronic illness.

In October of 2014, I was featured in an Australian magazine speaking about Ehlers Danlos Syndrome, blogging and adapting to life with a disability. The team at Defy Pain have also shared my story on life with disability on their website. I was also recently asked to join 'The Mighty' team, a website based upon all disabilities and a platform for sharing stories. The stories on their page are so diverse and unique yet equally as inspiring. I always feel so grateful to have the opportunity to share pieces of my work with very kind and understanding websites who take an genuine interest in bettering the lives of those with illness.

One thing I no longer stress myself out as often over is using my wheelchair. Before I started blogging, I didn't know of another soul like myself who was my age, had similar disabilities and who also used a wheelchair. I had put off using my own out of fear, judgement and how I would be perceived rather than being logical and thinking about how desperately I needed to use one. I didn't want to accept the reality of my situation and disability, I wanted to push through and foolishly, make myself worse. I was embarrassed and too stubborn for my own good. Recently, I wrote a post on using a wheelchair and had many people get in touch with their own experiences and tips. My pain has got to a point where at times, it is too painful to stand, walk and move. I was actually desperate for my chair on a recent trip out just from standing out the car, something I wouldn't usually express. I happily sat in it and didn't even feel phased by something that would have frightened me only at the beginning of this year. I didn't look for people staring, I just focused on getting myself through my pain whilst outside. I felt thankful to be sitting in a chair and to have safety that no one could barge into me. So many positive comments and feedback from others over that topic is something that I now always relate to when it comes to using my chair, this feeling can help to overrule the feelings of fear I was once overwhelmed with. I know that I am not alone, I know that it is for my benefit and I know that my chair doesn't define my personality or make me any less of a person because of my disabilities.

All in all, the longer I have my blog and the more I connect with and hear from others, the more determined I am to want to change the perception and face of chronic illness in young people. I hope that in the next year, I can find the courage to follow some of the plans I have in mind for this aspect of my life and I hope all of you can help me too. If you too have a flare for or enjoy writing think of the benefits you could also gain from blogging and connecting with others in similar situations. 

Lastly, I just want to say a huge thank you again to anyone who may take the time to visit my page, read a post, leave a comment or even get in touch. Your words, friendship and kindness always brighten my day and I really appreciate your honesty and effort in doing so. I hope that you all are doing as well as possible and continue to implement positive steps forward, despite your illnesses.... 

Monthly Favourites - June - Chronic Illness Edition

Trying to stay true to my word, each month I am going to attempt to find new, slightly informative, chronic illness related products or items that have helped me through my month, therefore being, 

my monthly favourites. 

Being housebound can be very tedious and testing, it's not the easiest of tasks to find outlets to occupy yourself with when you have been housebound for 8 years.  

Here are some things that have made it into my top 5 this month;

Apple TV-  A housebound girls dreams have been made! Weirdly, as my symptoms have gradually become worse, I've become not much of a TV girl. I prefer to go for things that are at a slower pace such as, reading blog posts, browsing the daily mail (haha), writing my own posts and like everyone else, have a good nosey scroll down my twitter feed. I find it so hard to focus on something fast paced with all of the pain I experience so this was definitely an impulse buy! Netflix, YouTube, BBC iplayer and more are now just a click away with this little bargain!

Radox Muscle Therapy Bubble Bath  - I came across this whilst completing an online food shop and like any other person with joint problems, the word muscle instantly drew me in. As I said last month, my new bath has been a god send for soaking my dislocated and painful joints as well as my seized muscles. The scent of bubble baths often irritate my mast cell and gastrointestinal symptoms. Luckily, I haven't yet had this problem with this item. For my Ehlers Danlos Symptoms, skin wise it was also very gentle with lack of break outs or skin issues. The ingredients are herbal based with a blend of black pepper and ginseng which when mixed with the warmth of a bath, are apparently meant to stimulate the muscles to relax. It doesn't move mountains just yet but in the meantime, it does the job for a few hours of coating my limb pain.

Ariana Grande Albums - I was fortunate enough to be in the presence of Ariana Grande at her concert at the 02 arena at the beginning of June. I have been a huge fan since early 2013 and was so happy to eventually find some disabled seats. I couldn't quite believe the notes that came out of this petite pop star, I was in awe of her range and have had both of her albums on loop again since the show. I love that when I go to a concert it then gives me a stage visual and imagery to also correspond back to the songs. Although the occasion was quite difficult to get through, in hindsight, I am thrilled I have been able to see an Ariana show. My favourite live performance was 'My Everything', it's a tear jerker if you can find it on YouTube.

Nosh Gluten Free Book by Joy May - 

I was advised at the age of 13 to cut out wheat, gluten and dairy due to how much pain I had in my stomach and bowels. Meal times since my early teens have been a dreaded occurrence. With a mixture of my Gastroparesis issues, Ehlers Danlos slow dysmotility issues as well as taking into consideration foods low in histamine levels for my Mast Cell issues, I have a pretty awful relationship with food and drink. Every single time I sip water or eat a bite of food, the pain that is in my stomach is enough to make me not want to move for the rest of the day and it has been this way since as long as I can remember. I've had more stomach and organ investigations over the past 10 years than I'd like to acknowledge. I despise these symptoms to be quite frank. It's been that way for so many years that I become so envious when I see others enjoying their food, I am so intrigued by how it makes them feel good inside. Earlier this month, my mum bought me this. I was kind of apprehensive as wheat free/gluten free/dairy free products seem really hard to make from scratch, in my own opinion, they don't taste particular pleasant either. I also didn't know whether my body and pain would allow me to have the patience to help out with making a meal catered to my preferences and dietary needs. This recipe book claims to be hassle free and is surprisingly simple. It also contains many photographs of the dishes, for some reason this always seems more appealing to me when it comes to trying new recipes. I am a visual person and like to see the end product. That being said, I still have to slightly adapt the recipe to suit my needs but overall, it has inspired me to branch out of my military set meals I have become accustomed to.

Batiste Dry Shampoo - Girls with chronic illness and long hair will feel my pain in this next favourite. I feel awkward even typing this as it's something so simple to healthy beings yet highly difficult for those of us with chronic illness. Not only does washing your hair alone become impossible when you have a chronic illness, sometimes you are so fatigued that it's hard to even shower without help that day. My hair is down to my hips now and although I don't want to cut it because it's finally at a stage where I like, it becomes an issue with attempting to wash myself. If I know I am not seeing anyone for a week, dry shampoo becomes my best friend to get me through until my mum can help me to wash it properly. I used to be the girl that washed her hair daily during year 7, how I managed that one, I will never know. A quick spray into my roots (and the mighty task for my weak arms of rubbing this in) the majority of the time will see me through an extra few days. My favourite scents and texture pay off that seem to work well for my rather thick hair are the tropical and original types.

Hope you enjoyed the second instalment of my monthly favourites instalment on my blog.

I am always interested in knowing what everyone else's' favourite chronic illness items of the month are. Please feel free to leave your favourite items below. 

                                                    

Pain overtaking the present in chronic illness...

image: via Google Images

One thing I have always found hard in my acceptance process with chronic illness is wondering what it's like to feel fully present. Pain and its arising symptoms can leave me in a very vacant state at times and I forget to savour the moment. Living with chronic pain can often reduce my attention and focus to great lengths when symptoms arise. Over time, I have found that in heights of pain, it over rules my abilities to function in normal ways, makes me fearful to make plans and most of all, it makes me forget to live for and be in the present. Any one can daydream off into their own world, I was guilty of doing this during school science lessons in particular. However, pain just makes it difficult for myself to recall positive or happier occasions that I've been a part of in life and their underlying meaning. There are a few occasions in life that I can remember really looking forward too, yet all I can remember of those times is sadly, the pain. It became apparent to me after a while, that any after thought was usually the reminder of how much pain consumed the day or particular moment I was looking forward to. This always felt off putting. It's strange how I have always been able to recall a memory off of how intense my pain levels may have been. It's hard feeling like all you gain as an after thought is the pain you experienced. It's a losing battle and makes trying even more difficult and off putting.

In chronic pain and illness, it's really hard to be presently there in the moment. I was recently asked by a friend whether I enjoyed my holiday. I wanted to scream yes, it's a holiday of a life time going to Disney World, Florida and I felt so fortunate to be in a position to go despite my pain. It's just so, so hard to dismiss pain from intense situations like so. It's really difficult to find the correct words to explain that to someone without sounding ungrateful unless they too, live a similar lifestyle or have an insight on life with chronic illness. On holiday, my days were spent worrying whether I would make it through the day rather than feeling excited over my new surroundings. Worrying if the rest of my party were enjoying themselves at a more disabled pace. Fearing if I would be able to stand up or move tomorrow. Worried if I could make it through a shower without collapsing. Worry over spontaneous dislocating and unpredictable symptoms arising. Worried how I was going to go out with food and drink in my system knowing full well the repercussions this brings. Worrying over others knocking into me. Pain and illness can bring you immense amounts of fear when you know the heights and potential it can actually reach, it is hard to still be presently there even though physically, you may be. You want to savour the moment and enjoy all that the moment can bring, but is it really possible with chronic pain?

When I sat and thought about that statement, it didn't just apply to how I felt over that holiday but anything or any outing with chronic pain and illness that I have experienced in my life. You are never truly in the moment and that's difficult. You are more concerned over your pain levels and getting through the day over letting loose and enjoying yourself like any one else your age. You can never just switch off or gain time off from your physical pain. There's no leaving your problems at the door like you can do with your job or social life. It's often a case of being unable to seize an opportunity for distraction from what is bothering you. Those who live with chronic illness and disability will never be able to leave behind something that powerful. This is obviously consuming your entire body and existence from the minute you open your eyes in the morning. It's not an easy adjustment or the typically average way of life, without sounding like a bitter Betty. I do however believe that it is a part of the process of learning to accept chronic pain being a constant in your life, in order to try to move forward. There is no avoiding this, so the only option is adapting. 

You try your best to cover the severity in situations out of the home in order to try your best to remain somewhat calm, but it isn't always easy as it looks. I definitely couldn't bare for it to be seen as rudeness or dis interest as it isn't the case. The vacancy pain brings is a greatly annoying aspect of illness for myself. When I feel anxious from pain I tend to zone out, when I feel noise sensitive from my pain I try to leave the situation, when I have large amounts of physical pain I become inward and unresponsive and want to shut myself away. It's just my coping mechanisms, but at times I wish it wasn't. It's even more frightening when I am out and these symptoms or feelings arrive as you just want your comforts in which you cope best. I wish pain could leave me be when I have something to do, somewhere to go, someone to spend time with but that isn't valid with illness. 

There are many times where I have to ask someone to repeat themselves, or I find myself repeating what I intended to say multiple times because I become tongue tied and brain fogged with fatigue. I even sometimes have to watch an episode of a TV show 3 times in order to understand what's going in. Pain can limit concentration levels on so many things. Let alone the important things I try my best to complete in a well collected manner such as blogging, studying and coursework.

Chronic illness is like a tight item of clothing that you have no choice but to wear. However many times you attempt to stretch it, it just refuses to loosen. Chronic Illness, a lot of the time is smothering. Pain is always in control physically, which can have a huge mental impact on your day ahead. As much as you try to be in and enjoy the present of your day, pain is always in control of what you are able to do and how you are feeling. For those of us who live with a looming illness throughout our bodies, we know the best ways in which we can try to coat our symptoms or pain in front of guests or when we are out of the home. It is still is increasingly difficult, frightening and dissatisfying that this is the case. When an illness can overtake multiple aspects of your body and arise many symptoms, any coping mechanisms that you have in mind and hope will work can go out of the window with co operating. Symptoms are a red alert to the body, it goes into meltdown. With that, your confidence in controlling and hiding your pain can slide, your anxiety can soar and your fear too. 

 

I often find myself in a daze imagining when the next availability to enjoy myself or the possibility of even looking forward to something, coming around. It's been an off putting process. I use the tactic of convincing myself that next time I will fully enjoy something, attempt to push pain aside and just be present. However, it never seems to go that way as there are so many pain signals going on inside of you that bring you back to reality with a bang despite any front you may put on. I suppose it's the same in anyone's life. People get distracted by noise, nature, talking, interaction and possibly whatever may be on their mind in their private lives. It's normal for everyone in this world to have their own individual problems on their mind, but a distraction may be a possibility for some. It just becomes disheartening when every minute of every day is usually this way and the main input is from uncontrollable pain. Even when you want to lay and think about nothing, pain is still the main physical aspect or present feeling you have to keep you company.

You are desperate to find the off switch for just a few hours. When there are so many aspects of a disability, it's hard to not go an hour without symptoms arising, changing or some aspect of your illness causing an issue and disrupting your day. It's hard to accept but it's also what we become accustomed to within our daily lives. I feel guilty from these aspects of illness when around others. My guilt usually lies in the issue that my situation becomes awkward for others to work with and brings a downcast on any occasion. We would all love to present ourselves without our illness and have the ability to leave our illness at home for the day. Why does our illness feel like it is 'so much of us' is a question I often think. I used to think this was mostly a bad thing, on down days, I will be honest and say sometimes I do still see it as more of a burden than a positive. However, illness also has made me the person I am today. I think that's something that needs to be acknowledged by all of us personally. We might want to sometimes feel free of illness and it's heavy armour, but it's not possible. 

It is a concern of mine,that illness will never fully allow me to feel free of its chains. I have a fear that ultimately it may ruin those cliché, "best moments"'of life. I don't want it to get in the way, but the chances are, it may be a huge possibility. Then I feel like that sounds negative but on the flip side, I do personally also see it as rational. I have lived with chronic illness long enough to know how it effects me personally, if I wasn't aware of the lower moments, I think I would be much harder on myself and my limits. It's always there, even if you can grit your teeth and put on a front to others you kind of feel like that's never your true self because inside, you constantly feel like something just isn't right. You are not the best version of yourself like I've said before, but you are making the best out of a situation that is out of your control and I think that's the only thing we can do really. There's a difference between accepting that fact and letting it beat you or accepting that fact for what it is but not letting it win. Win in ways such as ruining your happiness, your goals and your dreams.

I think that underlying fear that chronic illness can bring a person, has a lot to do with being able to fully enjoy yourself too. You build up a boundary and are frightened to let yourself go like anyone else your age when you live with a disability. With pain, comes many limits. As I've said previously, as a child, I was incredibly aware of my body and the pain it gave me. Although I thought it was very different, I didn't think that would later lead to a disabling diagnosis. I was self consciously aware of my limits compared to to others that I felt fear to actually join in, because I knew the end result from previous encounters of appearing to be like everyone else. I have taken on the approach since a young teen of always wanting to shelter my body because of the pain I am experiencing. I would never put myself in a situation where I think my body will be at risk. Crowds, distances without an aid, not knowing how disabled friendly a destination is and the unknown are qualities that make me frightened with chronic illness.

Although sometimes, it can predominantly feel like a negative, you will in time be able to see that it isn't all bad. In other aspects, pain has the ability to open you eyes to other things. It makes you more appreciative of life in its small qualities in ways that you wouldn't if you had not faced health adversity. It makes you feel grateful over the little things in life even though you may aspire to the bigger things.  It makes you want to attempt to savour every positive moment, even if it's difficult. The longer you live with chronic pain the more it makes you want to try and turn as many negatives into as many positives as you can seek, even if the climb to get there is big. Pain makes you aware of emotions in leaps and bounds and gives you the ability to use this to connect with others in suffering. You become grateful in the ability to compare horrific symptoms to just bad ones.

This makes my post on capturing memories even more important. When it's a struggle to remember the moment because pain may have ruined or interrupted your day, a picture might help you to unravel the deeper meaning of achievement despite pain. My goal is to still continuously try to push myself to still achieve what is in my heart and hope that pain allows me to be as present as possible rather than over ruling it. It's a positive encouragement and achievement that you all still continue to try even though you may be feeling particularly vacant. Trying shouldn't be dismissed. I want to be accepting of the pain, but I also don't want it to cloud my mood, judgement, happiness or ability to look forward to and enjoy something. I will continue to try not to let it defeat me and I hope you can too, even though sometimes, it may feel like it is.

One Little, Two Little, Three Little Follicles...

I fear I'm becoming a produce stand.

That's right, I'm basically walking around with two little bunches of grapes in my pelvis.

Today is Treatment Day 10, and I thought we would all enjoy a mid-stimulation check in.

I've been encouraging the growth of my ovarian follicles with injectable hormones for a week and a half.  My drug protocol is actually a little light, as I only have to do injections once each day (happy dance).  My regimen started with two medications to encourage many follicles to grow and a few days ago we added a third which prevents me from ovulating too soon.  Most days this past week I've headed down to my doctor's office before work (51 miles round trip - the things we do for quality healthcare) for monitoring consisting of blood draws to check hormone levels and transvaginal ultrasounds to measure and count my follicles, which I call "potential baby bud roll-call".  This means I've been stuck 32 times so far - 12 times for Follistim, 10 times for low-dose HCG, 4 times for Ganirelix, and 6 times for blood draws.  

I am happy to report that at this point, things are going quite well :)  Yes, that's right, this little Sjoggie actually has something going right!  These moments are few and far between so when I get one, I like to celebrate by high-fiving myself.  But that's besides the point.

What do I mean "things are going right", you ask?  Good question!  Here are some things that are on target or even better than average at this point:

• I'm developing a delightful number of follicles - one of the clinicians told me she sees on average about a dozen follicles total for a patient, and I have 10-12 on each ovary right now.  They won't all yield a mature egg, but in this case more is basically better, and I don't have so many as to pose any significantly increased risk of OHSS (ovarian hyperstimulation syndrome).
• My follicles are generally growing at a consistent rate - sometimes a couple overachievers will get plump very quickly, leaving the rest to play catch up trying to grow mature eggs, but mine have mostly grown at around the same pace which is great because it means it's easier to tell when we should trigger to maximize results.
• My uterine lining is on target - I'm not doing a fresh transfer so this isn't particularly important right now, but I am relieved to know that my lining is thickening to a good level.  This will be important when we do transfer in a few months, because you need a plush lining to give a little embryo or embryette a good chance of implanting happily.

At this morning's visit, my potential baby buds were measuring around 17mm (give or take, there's a range of course), which means we're getting close to retrieval.  

In addition to these objective ways of seeing that the cycle is going well, I am also happy (if a bit shocked) to report that I'm generally feeling pretty solid.  I'm only slightly uncomfortable from the feeling of my plumped up ovaries, which do resemble small bunches of grapes.  For me, it's this general sensation like full kidneys, and I'm more aware of it during the movements to sit down or stand up.  Of course, it's pretty likely I'll feel increasingly uncomfortable in the next few days but so far, so good!

I have had one problem crop up in all of this.  The day after my first round of shots, I had a full blown migraine.  Never having had one before, I didn't know what was going on but after talking to the doctor and reviewing all the symptoms that occurred, that's clearly what it was.  It started with a visual aura - I describe it as being like when you look at a camera flash, except the perimeter of the "blur" almost looked like tinsel, sparkly and irregular.  The "blur" began to expand and before it was over (about 20 minutes or so) it did obscure a good section of my field of vision.  While this was going on, the headache hit (I have a history of cluster or "suicide" headaches so this wasn't the worst part to me, the aura scared me the most), and eventually I had some nausea.  These "sudden onset migraines" are not uncommon with all the hormones and medications, but no one warned me about them either.  On the upside, except for a lingering headache the next day I only had one more migraine begin a few days later, without aura, and taking an excedrin when I felt it begin did help keep it from progressing.  Again, I'm not out of the woods yet but I am hoping that it was more of an adjustment issue and the worst is behind me in this respect.

So what happens next?  Another excellent question!

Each day that I go in, the office calls me a few hours later once the labs come back to tell me if there are any changes to my medicine protocol (there haven't been so far, which I think is a nice indication that my doctors did a good job figure out where to start, but for the record tweaks are absolutely normal because no two people respond exactly the same way).  One of these days that call will also tell me to take my trigger shot that night.  36 hours later, I'll go under IV sedation for retrieval.  The clinicians (and I) suspect they'll tell me trigger tomorrow (for Wednesday retrieval) or the next day (for - you got it - Thursday retrieval).  The day between the trigger shot and when we go egg hunting I get a short reprieve with no more shots.  That will be nice, considering my belly is starting to look like one of those tomato pincushions everyone's grandmother had after it's been stabbed a few hundred too many times.  And did I mention Ganirelix burns for a little after it's injected?

Granny's pincushion or my abdomen?

This is where we're at in the IVF leg of our infertility journey.  The day we have egg retrieval (and incidentally, every time we discuss that I feel like a giant chicken on a farm) we will find out how many follicles were drained and how many mature eggs were actually retrieved.  They'll inject each one with one of my husband's sperm overnight and the next day we'll know how many successfully fertilized, then we begin the highly distracting phase of waiting to see how many grow to blastocyst stage over the following 5-7 days.  Better buckle up, kids, we're just getting started!