To those who doubt chronic illness...please have more compassion

Tumblr via Google Images

When I am having a particularly difficult time with chronic illness, all of my concerns and worries in being chronically ill with an incurable condition seem to escalate. My mind begins to doubt any positivity I may have been trying to build upon daily and I am left with the turmoil of adjustment. Sometimes, I feel so low with the continuous, daily fight against pain that I feel like my heart is breaking over the outcome. I worry, I stress and I feel sad that life is particularly bleak at present. I feel low over never receiving any respite and quite frankly, I feel sick of being sick. I believe that this is a common setback in many who live with chronic illness. Knowing full well that life currently with these conditions, isn't really any kind of normal no matter the progressive, positive strides you try to implement.

I don't know about those of you reading this, however having received many different chronic illness diagnosis has made me incredibly compassionate for those who I am aware may be facing a tough lifestyle. Especially when those people are incredibly young. Maybe it is only because I have been in this position for a long period of time, but even then, I still think it is a morally correct attitude. Nobody deserves to be ill, yet it is a terrible shame to have a chronic, disabling illness when typically, your adult life should just be starting. You should not have to face such complex problems so young but you try your best to accept your fate as well as you can. Nobody should have to live in so much pain, that the majority of their week is spent in bed. It makes me more upset to think of others in that situation than it does for myself to often be in it.

Something my Mum has always taught me is that you will never be able to change another person's opinion, yet isn't that one of the concepts of learning in life?  I see this partly as frustration and partly as a challenge I want to tackle. Being chronically ill at a young age, opinions have become that of normal over the years. Some I listen and try to take on others, I just struggle to be on the receiving end of. I want to know why someone is so set in their ways when it comes to views on a specific incurable disability or illness when actually, they have never lived a day of it. My illness might be relatively unknown, but it is still having a drastic affect on my ability to live my life. I ponder over those in less fortunate circumstances with no support at all. It's a case of often wishing you didn't actually have an invisible illness and finding a forceful necessity to prove yourself. How can some people be so heartless, cold and unsupportive? I am lucky that for the most part, I have constant support from my parents. Yet when I cross paths with those who disregard my lifestyle or consistent pain, I can not comprehend how they could be so dismissive. Is it just because I don't have a high profile disease or short life expectancy? Does that make my chronic illness and pain any less?

During my time with my deteriorating illness, I have unfortunately been thrown opinions from those who think they know all the correct answers in life. The 'tough love' approach. I've been told how I should deal with my illnesses, how others would deal with it completely differently, been challenged on my pain, symptoms and limits, told to cheer up and that I am actually in a very fortunate position in terms of health. For the most part, when it comes to these kinds of people, we would have better luck drawing blood from a stone when it comes to them grasping any sort of understanding on our daily lives with incurable, multi systemic illnesses. How we are pretty helpless at the hands of something that has a grip on our bodies, trying our hardest to find the positive every step of the way, yet they probably would not believe that is true. It's easy to say, try and focus less on those kind of opinions and people, which often is the better and less emotionally painful solution. However, sometimes it is not so easy to escape.

Often, these people and opinions turn out to be closer to home for some in similar circumstances. Some people in this world will always have purely selfish mindsets and points of views. Yet how would they realistically fathom a lifestyle as such? Would they crumble in the circumstances of disability and ill health at a young age? Would they wish they had more support and helpful, yet positive comments to be on the receiving end of? The projected, outspoken high and mighty attitude is purely prejudice to those living with incurable, chronic illnesses and not in any way supportive or positive. It just makes us feel awful over limits we did not ask for, nor have control over.

My advice to those who have entitlement opinions on young people with incurable, disabling chronic illness. Put yourself in someone else's shoes and if your opinion is harsh and critical, evaluate if it is necessary to project. Just because you cant see the pain overtaking the body, does not mean is does not exist. Those in pain are not moping, they are suffering. They are not choosing to be unable to leave the house, they can't physically cope with or get their pain under control in order to leave the house as much as they wish too. They are not lazy by having to stay in bed, they are chronically ill with more pain in their little finger than you've possibly had all week. They are not miserable, they are probably feeling isolated, alone and depressed at the current state they call a life. Unfortunately, chronic illnesses are no where near to being a cold or the flu where life seemingly carries on. Some illnesses have symptoms that many people in this world, will not receive or deal with in a lifetime. Chronic, long term illness can sadly lead to a disability and housebound existence at many intervals for long periods of time. Chronic illnesses can require aids, countless medications, carers. It can hurt deeply to have those you regard as close to you doubt your pain, lifestyle or abilities. To feel judged and like you need to prove yourself and your chronic illnesses. To feel like you need to possibly break in front of them for them to realise how tough it is.

Be conscious around those who are chronically ill, they are probably not in a good place whilst staring in the face of abnormal adversity. With forms of health changing unexpectedly on an everyday or hourly pattern. Find it within yourself to support them on their bad days more than their good. I can tell you for a fact, that receiving support on the bad days, which are 90% more frequent in a month is of more worth to us than on the good days. Don't kick them when they are already down and struggling with adjustment to a new reality, one incredibly parallel to that of a healthy young adult. Any regular abilities of a young adult have probably gone out of the window and they are trying their hardest to adapt and accept whilst watching everyone else of similar age, live. Probably one of the hardest parts of having an illness.

What I was trying to get across that actually, when you smile or laugh, your pain is very much present. When you stand before someone, your pain is very much present. Pain is never not present and on a scale, it is probably never lower than a 6 on a 'good day'. It's not as simple as being told to get out more for your well being and to make the most of life by doing more. Being able to go out is not a task of ease, it is not something we can do second nature otherwise, well we would be working, attending university and socialising like the average young adult. Usually, our pain is so bad that all we can actually do is lie down and sleep. It's not that we do not want to, its that we physically can not shake the pain off the majority of the time. When we do, brilliant, however we are not pain free and that is important to realise. We do not dip in and out of pain, our unpredictable, quite frankly incomprehensible symptoms do not leave our side for any upcoming event. Life would still be working like clockwork if that was the case and we would not have the title of 'chronic'.Everyday is a challenge and we deal with it as it happens, as best we can. We do not have the beauty and joy in life to be completely spontaneous, to set time limits and to do as we please because pain, head to toe is a part of our package.

It can be difficult, yet try to remember that it is very easy for outsiders to make assumptions on your current lifestyle. However, there are always people who will understand. If you are new to this chronically ill lifestyle or have no support from others, let me assure you, you are not alone in your fight. There are many other young people who are just like you who have been through it and will be willing to support you. Weirdly, we were possibly once all in relatively good health, taking it for granted, not knowing what exactly was around the corner. It is a reminder that the less supportive people still have a lot to get through in life and may understand one day what it is like to need and provide compassion to those in need.

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.

Capturing memories...reminder of achievement

Image source: Tumblr via Google images  

Since my early teens I have had a huge fear. I often hate having my photo taken, it sounds quite silly because I know nobody else will physically see anything other than just another blonde girl in a photograph. However, to me when I see photos of myself from the age of 13 to present day, I just see a girl with a consuming illness. I see all that the blonde girl had to put on hold, all of her health issues, the countless times spent isolated and all that she has been through in a short time.

 It's the same for anyone, we all have a story to tell that we would never be able to get across in a still image, but when it's yourself it's easier to spot and critique the negatives of what is getting you down in life. I often feel like photographs are a blatant, timeless reminder of the way my life has turned out and how during this time, how I lost that sense of normality which consisted of being a young carefree teenager before I even had the chance to be one. I lost the ability of transitioning into the next chapter of life because of my health issues. Instead, I became an unhappy shadow of my former self living a life in chronic pain, severe depression and anxiety, social isolation, limited friends and activities, plummeted self esteem and everything I didn't want to be as a young girl, so I simply started to avoid them for a very long time. I was living a life that I was ashamed to be apart of and wanted no reminder of my existence.

However, last year when I was asked by a magazine to share an article about my blog they also wanted me to send photographs of myself on holiday 'having fun', I instantly panicked. I had no photos because I had refused to be involved in them. The reason behind this was because I felt so depressed, consumed and sick of living with my pain. I didn't want to capture the moment because I didn't want to be reminded of how ill I was constantly feeling in myself, even though still to this day pain and illness make up my daily life just like at the time of avoiding photos for many years. It didn't sink in to me that I was allowing my depression from illness to stop me capturing memories that I rarely participated in.

Everything seemed to relate back to illness and I couldn't stand it. Within illness comes side effects, some physical, some not. I didn't want photograph evidence that showed off my my fragile Ehlers Danlos skin, or the blood pooling in my legs from Postural Orthostatic Tachycardia Syndrome. I didn't want to give myself a reason to focus on things like the swelling under my top of my internal organs, my swollen eyes or swollen legs. I didn't want to see 17 year old Nancy sitting on holiday in her wheelchair with splints on, I know looking back, a lot of this was to do with confidence issues, self esteem, depression and acceptance of my chronic illness.

My mum used to say to me in years to come, it would seem like I never existed for my teenage years because I just didn't want the reminder of the sadness that made up this important time in someone's life. Sometimes it's hard to accept the fact I've missed out on many years of my life. I felt like if things got better, I could just forget that period of tribulation happened however then I found out my illness was incurable. I still couldn't quite accept this fact and held onto hope that it was a mistake. I knew full well how my body felt, that I was disabled, however I just couldn't accept the fact that incurable was a part of the equation.

Since that day in 2014, I now make a conscious effort to take a photograph if I am making a memory, despite the pain, my low mood or how I may feel that day. Despite fighting the urge, I do this to remind myself that my existence is important for my sanity, my family and because I am here for a reason. I'm slowly becoming more accepting of the fact that my pain will never be cured and that I just need to live life when I can, as I can and really search for aspects of life that will bring me happiness. Although I still see a girl who has an illness, I now try to force myself to take part in the photograph even if I don't want too. I also don't want to be left with zero photo's to look back on in decades to come, because realistically I will probably always be the girl who has a chronic illness. 

Being virtually housebound, going out is often a rare occasion, although doing so also gives me a good reminder that even on days where pain is still highly consistent, you can sometimes try your best to not let illness steal another day from you. I also started a memory scrapbook/box for the year 2015, with a quote to remind me of what I have participated in to read at the end of the year to remind myself of any achievements, big or small. I even write the things I would like to achieve in months or years to come, fold them into tiny bits of paper and will open them a few years down the line.

I recently had a lot of photos taken on holiday, sometimes I slipped back into my old habits and avoided participating because of how I felt in my self and other times I took on the challenge with my new perspective. Initially I looked for the physical attributes that were incredibly obvious to myself. The unwanted swelling of my body, physical splints or bandages or whether I looked as horrific as I felt that day. However, I was quickly reminded all that it took for me to get out, participate in the day and push through despite all of my pain or my thoughts on wanting to give up and stay in bed. It's incredibly difficult to give yourself credit, however so much is involved on a daily basis with chronic illness, it takes a lot of self reflection to realise just how well you are doing.

Instead of now looking at a photograph and making a mental list of the the aspects that make up my disabilities, I try to recall the memory I created that day, what I laughed at that day, if I like my hairstyle or the make up I made an effort to wear, but most of all I tell myself how good it is that I pushed through the pain to do something.

Photographs tell a story, hopefully many years from now you can look back, remembering how you overcame whatever is going on in your life right now and be proud of what you've achieved. Maybe the photo will represent both your pain but also your power in which you pushed through your barriers to enjoy a special occasion. Possibly in the future, you will be having more better days, maybe you will feel proud of how far you've come, maybe your life will be worlds apart from what it is now, maybe your hopes and dreams will have come true.

For those who are chronically ill, it's a certainty that we are unable to participate fully in life to make happy memories frequently. This is just a reminder for you all to remember to capture your "more able" days in a photo (I don't like the term 'good days' as I feel it personally dismisses chronic daily pain). This is for proof to yourself that despite chronic pain and illness, these kind of moments can give you something to feel proud about. Despite all that it took for you to make a memory, in return it can give you a glimmer of hope in reminding you to keep trying and that some form of happiness can even exist during incredibly painful days.

Use your time out doors as a positive step, although it is a strenuous and draining participation and others may be unaware of just how difficult it is, seek the positivity. Take a photograph, play your favourite new song to correspond with the memory (I love doing this), use your energy to go to your favourite place and most importantly give yourself credit every step of the way for what you have achieved.

For those of you in chronic pain and doing a similar thing to myself in avoiding photo's so you don't have to physically remember your illness so blatantly or feeling that you want to block out this low period in your life, it's hard to remember that all that you are going through right now or all that you have been through will be the making of who you are. Positive or negative, it is having an important impact. It's not all that you are, although sometimes it may feel that way, but it is moulding and shaping you into the person you are becoming. Even though the sad or negative emotions may be present when seeing a physical photograph, you did it and as those of us with chronic illness know, that is the greatest form of momentous success for people like us. 

Grieving your old life in chronic illness....

Image: Pixshark via Google Images 

Grief is a natural process that occurs when we lose someone or something in our lives. I was never told by anyone in the medical field to prepare for grief when I was diagnosed with a chronic illness as a teenager. Instead I felt ashamed, frightened and less entitled to these feelings because I was still technically breathing and 'alive'. However, after many years of doubtful thoughts I realised I had lost something. I had lost something drastic in the form of my life, an identity, physical abilities and good health for the prolonged future. I had also lost my teenage years, friendships, a social life, my aspiring career, my ability to study, finding opportunities and most importantly, the ability to a quality of life. It was nearly my sixteenth birthday when I was told that my health issues were chronic and incurable. It was a whole cauldron of loss that unexpectedly arrived at a time and age where you are supposed to be discovering who you are as well as enjoying yourself.

A certainty in life is that we will all suffer with grief at some point, however illness can be a constant grief. To those who haven't experienced illness, the concept of mourning the loss of an old life before chronic illness arrived may not be envisioned as acceptable, or even possible. Especially illness on a chronic scale. However, the majority of us know it is not fair to physically compare the loss or coping mechanism of a person to somebody else who is also suffering a personal bereavement. Grief can come in all different forms, such as grieving over loved ones, pets, divorce, relationships, a job, financial woes. Grief shouldn't cause a person to be judged because there is no correct way, entitlement or category in which it needs a purpose.

There really are so many parts of dealing with grief, the five main processes being;

Denial, Anger, Bargaining, Depression and Acceptance 

There were many attributes that I went through over many years. Sometimes I felt all of these things at once, other times purely numb. Over my situation I have felt, anger, completely helpless, depressed, fearful, sadness, anxiety, low moods, loss of appetite, doubts and disbelief. Its is a consuming, drowning feeling. It's a constant weight to carry around, however realising it is all a process in your grief is a big step towards acceptance.

I was in denial for such a long time that my condition was actually chronic. Being told you can't be cured or really helped in an illness is a terrifying experience in life. For a long time I was so angry at what my situation had become, I blamed myself, my body, my genetics, anything that I could. However, there is no correct answer as to who or what is to blame for my health circumstances. It simply is a case of, it is what it is. I've come to realise there is no time limit on grief and no particular reason for it to consume you.

Upon reflection, because we are facing chronic conditions, there really is no time limit when it comes to the period of our grief. Sometimes it lasts a few years, a few months, weeks and sometimes we are reminded of it's presence every day. Anything can trigger the feeling. My own examples of when I am reminded of my own grief being, when I physically can see how different I've become to those of similar age, when I envision where I should be in life if I didn't have an illness, feeling stuck in my situation or when my body and mind feel like they've hit a brick wall countless days in a row. But typically, its usually when I'm having a really bad day with chronic pain and the realisation of how life has drastically changed through my illness.

Many things can effect the loss of life we feel and the reoccurring effect it may have on us. My own handling with grief comes in surges. Just like how we mourn the death of a loved one on their anniversary, poignant moments bring on all the old feelings of grief and possibly some extra on top for my increasing health problems. For instance, I find New Years really difficult to process.

Grief is draining, physically and mentally. There is so much that you lose, that just disappears from your life with a chronic illness. It has made me feel very numb, but at the same time distressed and unable to think straight. These types of feelings may convince you that you have mental health problems, but it also could be a factor or a form of grief. Nonetheless, grieving is a positive step, because you are being open to your feelings. The repercussions of shunning these emotions away in the long run usually ends with them exploding massively. Don't run from or block out your emotions. Find a way that you are comfortable with and that is suitable to your situation to confront it head on.

There may be examples that you may not deem worthy enough to feel sad over, however these things are very worthy of your emotions. You have the right to feel sad. It's important that you go through these emotions in order to get yourself in a better mental state towards acceptance. I really don't know why those with chronic illness, especially young teens and adults, are never told to prepare for the grief they may face. A brief warning on the subject may be what stops the cycle of despair and questioning for such a long time. It is something that is faced by everyone who deals with their individual illnesses and I am positive doctors are very aware of this. I do hope that over time, this changes and young people are prepared for and warned about the adversity they will possibly face.

Another process of grief is bargaining or wishful thinking. For example, praying for an easier life or for life to not be as bad as it seems. As well as feeling like you are being punished in the form of health problems. Not everybody is religious or spiritual and feels it is necessary to have relationship with God or a higher power. However for some, they really appreciate, find comfort and seek this within their everyday lives but at testing times especially. I'm not here to preach my own religious views, as I believe it's a personal choice as to what someone believes in. I wouldn't judge individuals in their reasoning for what they believe. However, I do believe I will find the strength to endure a hard life with illness, whether people think that comes from a higher power or within themselves is up to them to decide.

Even though those with chronic illness tend to live fairly isolated lives already, many of us end up isolating ourselves even further in order to deal with the grief. We can segregate ourselves in order to deal with what is on our minds in private, as well as our everyday pain. However, sometimes it helps as a form of release to share your feelings with someone you can trust. It may not occur to the person you are closest too that you may be facing this hurdle. They may not think this actually happens during illness. After taking a few years to actually accept that I was indeed grieving a loss of my life but especially my teenage years, I used this term to my Mum and she was instantly very supportive that in fact, this was true to my situation. Sometimes, I like to speak of what I am going through with someone close and some days I find it easier to process by myself. There is always someone to speak to in a difficult situation, even if it feels incredibly daunting. Speaking to those who you trust might be an outlet in releasing some of what you are facing or even speaking to a grief counsellor.

I'm not quite sure whether healing is a certainty in grief. When I suffered a personal loss of a really close family member a couple of years ago, I always tried to comfort myself and my family with the fact that you never get used to the fact they are gone or that you'll never see or speak to them again. That factor doesn't become easier to accept. However, you just learn to adapt to a new way of life without them. I believe this is true within chronic illness too, I can only hope that eventually we will all adapt and work through our grief of the loss of our previous lives. We will never be cured of grief, it is simply seeking happiness in ways that are suitable to our mind sets at present.

Through out my life, I'm pretty sure I've never never completely healed from what I have lost. However, it's not all negative. I am grateful for the emotions I have been through because I now have great empathy on a scale that probably wouldn't have hit me till a later point in my life. Although it was never easy, I'm grateful to have been through such testing times as these kind of hurdles put me in touch with very difficult emotions from a young age. I know that my illness has allowed me to relate and be courteous towards others of any age who may be struggling, for the rest of my existence. I'm sure many with chronic illness feel this way too. It's a strange limbo, weirdly all that causes the intense feeling of grief is actually teaching you one of the biggest learning curves mentally, in your life. You become stronger and wiser in the long run. A case of the good with the bad, if you can really look for the positive in the situation.

Moving on with life after grief is a difficult obstacle within illness. You can't physically change the way in which your health or illness declines, this is obviously something that we learn to accept will usually be at its own peril. This affects your day to day chance of "living" so engaging or creating an active lifestyle or social life to divert your mind is always going to be a more challenging step. Find the things that make you happy and that you feel are manageable within your circumstances. Aimlessly spending your day in bed when all you want to be doing is working hard,mixing socially and living is a hard cross to bear. You lack structure and routine in chronic illness however when you go through typical grief in life, keeping your normality is something that is pressured to be vital. Illness is very unpredictable and most of us are housebound, no two days are the same but one thing that is certain is pain. It's hard to find your new outlet of structure. There doesn't seem as many outlets to distract and divert your attention in illness, going out becomes increasingly difficult so you feel at a loss. A focus is good, even if you can't leave the house try to think of something you may find enjoyment in.

I think goal setting is something that is helpful in grief. Clinging on to hope of unattainable dreams, although at the start is something I may have attained to get back too, I no longer found suitable once I was confirmed disabled and chronically ill. I felt like it was holding me back more because I was pondering over what could be. I even found this dragged down my mental state. It is really sad to leave behind goals and dreams but I instead now want to focus on building adapted dreams or small goals. I am determined to find a new calling in life so to speak. As difficult as it may seem, try to find a new goal you can work towards with your disability, that is still in your heart but seems more achievable. Its always good to have a goal in life to work towards, the key in disability is making sure it's attainable and not impossible for your strengths and weaknesses.

You have your own individual battle with acceptance, adjustment and grief. You can feel these emotions for as long as you wish if that's what helps you overcome and accept your current position with chronic illness. It will always be highly valid in your journey, because it is an intensity of emotions and frustration from a significant loss in your life. I still deal with my grief. It's something I have accepted that will be a figure that swoops in often and when it pleases. It usually comes and goes during darker periods with my illness. I'm no longer frightened of this feeling as I know I'm entitled to feel this way. I know that the reasons I have these overwhelming surges are stemmed from illness and I deal with them as and when they arrive. Something that really helped me was knowing that the majority of others with chronic illness felt like this too, however that is only something I learnt along the way.

I thought that writing this post would make me incredibly sad and tearful, however it is something I've dealt with for such a long time that I feel more accepting to its presence. I know I will always mourn for what could've been in life, however I also look forward to what I can make for my future and my happiness. There will always be down days and I am aware of that.

For a person to find themselves in this kind of situation is not easy .Even if you feel like the grief cycle isn't completely ending, you may notice that over time you can go for longer periods without these consuming feelings. Like I've said in my "finding a balance" post, it is also important to deal with what is happening right now rather than looking too far ahead. Only those who have been through chronic illness will understand the grieving process we go through to mourn what our lives once were. Grief is a normal and an important process of living, especially when it comes to dealing with chronic illness. Without grieving for your old life or the life you craved, you won't accept your new reality and move forward positively and in a stronger mental state to deal with the future hurdles of illness. Finding a new happiness with your adapted life and a fresh outlook, as difficult as it may seem is the only option to progress in acceptance of your new way of living.

Using A Wheelchair - age, confidence & more....

image: lovethispic via google images

It's hard for myself to believe, that from the age of 17 I have been wheelchair dependant. It's an aid that is meant to make life easier for those of us who are told by doctors for the sake of our disability to be using one, but with this comes so many emotions and worries. Again with the majority of aspects in chronic illness, there's a lot of reflective thoughts such as:

"Why me? Why can't I have the same physical tolerance levels as others? Why can't I be like the rest of my friends? Why do I need this wheelchair so badly?"

These questions don't have direct answers, more so answers we wish to hear to ease our pain in the reality of the situation, yet they won't physically change the attributes or the true reality of our everyday lives living and adapting with disability. If anything, they hinder our growth in acceptance of the process.

Although some may assume incorrectly that the issue must be with your legs when you are dependent on a wheelchair, consciously you need to remember that this is the misconception of wheelchair users. Yes, some people are in wheelchairs because they are severely disabled in many different forms. However, others using wheelchairs don't have to be in one because they are paralysed. They can be in wheelchairs because they can't walk distances, long or short, because they faint, because they are too weak for their body to carry them, because they dislocate, because their bones or muscles are fragile, because they have chronic fatigue forcing them into a zombie type state where it's more than difficult to function. There are seriously so many reasons for a person to be in a wheelchair other than what is drilled into us from a young age to deem correct.

When you become chronically ill and a wheelchair comes into the equation it is very hard to get your head around. How you can go from being able to walk your dog a short distance to becoming bedridden and unable to leave the house without this very obvious and physical object all of a sudden. Especially when growing up you only assume that elderly people should be using wheelchairs. It's something I was hugely embarrassed over and couldn't comprehend for many years. I didn't know of a single person who used a wheelchair, let alone a young person. It's something that not a lot of people surrounding you will go through at a young age so it is an abnormal situation to find yourself in.

Wheelchairs don't always phase people in illness, possibly because some can accept the fact they need one pretty fast and won't let it stop them from doing or achieving what they want, which is fantastic. However, for me I always disliked the thought of giving someone a reason to stare. I hate the attention you receive when in one, I hate to be pitied and looked at, I hate the stares you can receive or puzzled faces as you are wheeled past others. I imagine what others may be thinking, young people especially being my concern. It's horrible to feel so obviously different to others your age. Do they see me as weaker than them? It's a situation I don't really know how to accept or adjust too. Only you will understand how drastically your disability affects your daily life, yet a wheelchair makes it more than obvious to strangers, let alone close family or friends who may know of your health issues.

 I often have an overwhelming fear of being seen out in my wheelchair. On one hand, I know how desperately I need it. I want people who I am close too to clearly understand I am not quite able to keep up with their level of abilities but on the other hand it brings me such a feeling of vulnerability. What is strange is that for the majority of the time, I have no problems mentioning I am in a wheelchair to whomever it may be. It's not something I feel ashamed to say, but it's something I feel self conscious of being in and using. Especially local use of a wheelchair. I think this is something to do with seeing people I 'know of', it gives me a great deal of anxiety so I like to protect myself and my vulnerability. My mum often says that it shouldn't make a difference if I was to see someone I know, because if they was a friend they'd know that I was already using a wheelchair and therefore I shouldn't worry if they had an opinion on the situation because they are not a part of my life. Like most, I have always been told that the older you get the less you worry about what others think of you. I'm not quite there in the slightest but you do grow as a person slowly but surely and only time will tell.

In the past I was making outings worse for myself because I was struggling a great deal to keep up with healthy beings, yet I was just so anxious over seeing someone I knew whilst being in my chair, so I would wrongly convince myself I could actually walk and stand for prolonged lengths of time and instead suffer the major consequences. With my illnesses (Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) standing, being upright/on your feet and walking on weak joints, muscles and tissue is not helpful to the body with the symptoms that arise. It causes more damage in the long run to be walking around on our limbs that just are not strong enough to cope with this kind of strenuous physical activity that so many take for granted. We all need to remind ourselves in moments of doubt that our wheelchairs or our scooters are an essential aid for us to get around because our bodies are too weak. I personally saw my wheelchair as something to make me ashamed rather than embracing and accepting the fact that it could help me.

A wheelchair is actually for your own safety. People are less likely to knock into you or cause damage to your already fragile body. In my illness; I dislocate without any warning. I also pass out when blood pools in my legs, therefore not making its way to my heart and pumping overtime in order to reach there. Wheelchairs can lengthen the time you manage to be out, they do not in the slightest ease the pain you may already be in but they can help to preserve your energy. There have been times in the past where I have been out and after 5 minutes I am exhausted or feel faint and have had to resort to sitting on the floor because of lack of chairs around. It sometimes takes a scary experience to realise that it's more than beneficial to be in something that is causing you great fear.

 Obviously the reason most of us are housebound is due to high levels of pain so sometimes we are unable to leave the house full stop. However of course l would like the confidence to be able to get out more in my chair. On days where I feel up to pushing myself, I would like to not be embarrassed to use my wheelchair. Although, I will say that the worse my pain and disability becomes the more accepting I become of my wheelchair because I know it really is truly necessary. I know that I can not physically stand a walk a distance greater than a couple of metres without an aid.

I've since stated taking baby steps. The more I go in it, the more my confidence grows and I become more at ease with the process and I really hope this evolves positively over time. Although the amount I physically am able to leave the house is minimal, when I do the wheelchair is now always the option. I now have taken my wheelchair to 5 concerts over the last year. Considering I would not even have the confidence to use it in England because I was embarrassed, I seem to somehow dig deep, find some confidence I didn't think was there and sit in it with thanks to those around me telling me to not be frightened to use it. I do notice it preserves some energy, it doesn't stop the pain, in fact it can sometimes be quite uncomfortable but I do understand that it is necessary. I also take it to hospital appointments as the building is usually huge and far too long a walk. Other than that friends visit me at home so what I do manage is catered to my disability.

There shouldn't be a stigma to young people in wheelchairs or at least so many of us feel like there is. Being young and using a wheelchair, although something that may not seem as largely common is also a necessity in your quality of life when you have a chronic illness. Confidence will always come into play for those of us who lack in this area, but try to keep perspective. A wheelchair is a tool to get you out more and help improve your quality of life. Don't make the mistake I made by being frightened for so long and putting off using your wheelchair through worrying of others opinions. Will you see those people again, probably not. It's a huge achievement to use your wheelchair when you feel like you don't have the confidence and how anxious it may make you feel. There is nothing to make the situation any easier to accept other than the fact that you NEED the wheelchair, for your own safety, it's a necessity despite how stubborn or against it you may feel.

So here comes a challenge!

 I challenge those of you who have a wheelchair but are too frightened to use it in public, to use it when you next manage a trip out. Rather than think of the negative thoughts the wheelchair may arise, instead focus on the positives e.g energy/fatigue levels. For those who use a chair frequently but tend to look at the floor (I'm talking to myself here too), see how many times you look up when going past groups of people young or old in your chair.

Don't give up hope....we will find a balance eventually.

Image: Tumblr via Google Images 

The post below is something quite different for my blog. I wrote this post in the depths of a very low mood one evening in hopes that it could give an insight into those really bad moments that can come when chronic illness or pain gets the better of our mental state, convincing us of only the negatives within our situations. On analysis writing this intro almost ten days later, the mood didn't stay with me as long as it would have in the past (which would have been weeks), which can only be a positive progression in my life.

Whilst I have been taken into consideration methods to try to adapt my thinking patterns into a more positive nature, we are all human and we all have those days where we feel down and sad for no apparent reason. We digest these moments in our own ways, sometimes its easy and sometimes its difficult. Right now, I am processing one of those more difficult moments. The pain from my illness, the drastic feeling of loss in my life, the lack of ability to discover who I am separate from my illness as a valid person seem to be the main driving forces behind these moments, at present.

As I have said before, these occasions used to be very frequent in my day to day life. I would break down a large amount of times during one day, my panic attacks were rotten to the core and I was experiencing them every 20 minutes on my lowest days. Although they still simmer daily, they are now thankfully not as bully like in their nature. I try to not let them drag me in like they once did, however sometimes there is no stopping that process. It's not something to be ashamed of, it can be frightening, lonely and intimidating, but the moment will always pass no matter how bad it may feel. It may feel like you will never get through those attacks, but you always find the strength inside to do so.

However, as I type this post, it's just one of those days. We all have them, we all have to go through them as tricky as they seem. Even though I will most probably post this at a later date (right now it is 23:20, Thursday December 18th 2014), I thought this would be a great chance to just write down exactly how I am feeling in this moment because of my illness and life in general. I'm hoping because this is in the heat of the moment, I may capture just how raw the heights of emotions can begin to stem from, sickness, pain, illness and isolation from the perspective of someone with a long term chronic illness and disability from childhood.

Today has been a strange day, fatigue has been a struggle for the last couple of weeks. I seem to be waking up tired and in discomfort, which is therefore making me sleep until the early afternoon. When I awake and finally get myself together, it is basically night time again. The nerve pain in my back has been quite uncomfortable with movement. My finger, knee, hip, ankle and shoulder dislocations and subluxations have been rapid and like usual my internal pain has been severe. The smallest tasks are proving more difficult than usual and I have a heavy amount of life reflect with times like this. I hate that chronic illness can rob you of a life you planned or dreamed and the ability to be able to function like a normal human being. It's more difficult accepting this because I am only 20 and have lived this way for longer than I envisioned.

Although I haven't shed a tear, I am just processing, keeping myself to myself locked away in my bedroom. I become very withdrawn in these moments and avoid everyone physically and in any ways of communication through my phone as the day has gone on. I hate to be pitied or babied and I get very angry at myself now when I bundle so many things on top of each other and let them all get to me at once. I know I shouldn't be angry at myself, we are all eligible of these moments however we are our biggest critique at the worst of times. I'm trying to figure out what exactly is stemming this low mood, it's possibly a bad mixture of all of the above. I seem to be at a loss with the thing I have become quite good at, analysing and breaking down the situation. Even though I have broken the factors down above, I still cant put my finger on exactly what is making me feel this empty.

I remember when I spent some time on a pain management programme, they said that my way of handling my emotions in the height of a teary stage or panic attack wasn't always correct. I tend to lead more to a distraction when I feel really low. I listen to my iPod mainly as a way to visually conjurer up something more pleasant in that moment to focus on, yet the feelings or thoughts will then always return soon after, often surging more abruptly than before. I thought that the best solution was to attempt to get as far away from my thoughts as possible and that the advice they were implying was incorrect for my situation. I felt like I was dealing with it best by 'escaping and replacing' my low mood. Two years on I think right now it has just clicked what they were trying to get me to understand back then. The more you push the thoughts away from you, the bigger it builds until it implodes.

Tons of questions can fill your brain at these low moments. My own tend to be;

 Am I happy that this is my situation? No. Am I frightened that this will be what life is like forever? Yes. Am I worried I will not be able to achieve my goals in life? Yes. Do I acknowledge there are many other people in this world in worse situations? Yes. Do I feel stuck? Yes. How do I change these feelings? I really don't know. How will I progress? I don't know.  

I can see clearly now, that what I am doing in this very moment counts as a distraction, yet it's a positive distraction because I am in fact dealing with the issue and processing the thoughts that are making me feel so low, in order to leave them behind and not bring them into tomorrow. I am focusing my energy into tackling the problem head on, rather than pushing it aside and letting it arise again in a few hours. In the past, how stuck I am feeling in my life would've been on my mind for weeks on end. It was so miserable to carry around. I definitely think of the same thought often, however I am quick to remind myself that there is nothing I can do about it right now and to just try and focus on today once I have broken these thoughts down in a rational manner.

There are so many attributes in being chronically ill that scare me in life, there are so many unanswered questions, so many worries, so little quality of life, yet the more I think of the bad points, the harder it feels to cope. This always makes the process seem incredibly over whelming at times. Sometimes it's easier to not over think life and just take each day as it comes. Sometimes I feel so sad that my life is like this at such a young age, that illness robbed me of all of my teenage years, but then I remind myself that there is a flip side to this. I still am so young, young enough to achieve, young enough for there to be a hope for life to change and young enough to find myself a balance. It's often difficult when life and countless days or months pass you by in illness, but hopefully our time will come. I hope that in my moments of despair, this sentence can strike a chord with me and remind me that life still is possible, I just have to build the blocks very slowly to find my way.

Since I have come back to edit this post, many more of these moments have occurred, the panic attacks have been in full swing, the despair has been a permanent figure in my everyday life but like always, somehow when the odds feel against you, you manage to pull through. I decided on uploading this whilst in a down phase because I needed the reminder of where I need to be heading in life. Trying my best to remain, optimistic. Not necessarily forcing myself to be positive over my situation, but optimistic that I can still achieve goals, find happiness and find a quality of life I no longer feel depressed over. A steady balance I feel my pain can work with. At the moment any sort of a life is non existent, which is something no doctor, illness or fortune teller can prepare you for. Depression is a common illness when you are chronically ill, nobody wants to live a life in daily pain, it just so happens that we don't have a choice in the pain aspect so our mood is often sacrificed.

I hope that although I am not on the path I intended to be at this age, nor where I want to be right now that eventually, I will find my way onto a path that I will be happy with, grateful and thankful for. Most importantly, when I eventually look back on life in a few years, I hope I will understand why things turned out they way they did. Furthermore, because of the way I have been affected in my daily life and well being since I was a young child because of poor health, the more determined it makes me to want to raise awareness for Ehlers Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome and get these illnesses out to the public for awareness in hopes of bettering all of our lives, medical care plans, knowledge on these illnesses and making us less invisible for our futures.

Granted it's not where I want to be in life right now, its possibly not where many of you want to be in your lives either. Life isn't always fair or smooth sailing for any of us. I'd like to be optimistic and hopeful that I am in this situation for a reason, that reason may well be that my health issues allow me to have this blog and give me an opportunity to interact with others in similar situations who can help and support me in bigger ways than expected.

I think we all sometimes wish we could run from our illness and problems when everything builds up. A place where chronic illness doesn't exist, but unless we have body transplants, that isn't possible. However I know we will all find our individual balance eventually. I don't just think I will find a balance, I am positive I will find one, because its the only choice I have in order to be happy in a negative situation that is chronic illness.

What Pain Does To You...Part 2

I thought today was a perfect day to write the second half of what pain does to you, as this week hasn't been too pleasant. Apparently, by expressing that I would like to write part two of this post in a couple of weeks it unfortunately turned into nearly two months. I do apologise! By non pleasant, I mean that my pain has been extremely high and with intense pain I think its safe to say all of us with chronic pain tend to know what will come next. An almighty low mood! Throw a good few hospital appointments on top of that within a few weeks and I have reached the end of my "I can't cope" tether.  

 I have had two concerts to attend this week yet am finding them even less thrilling as my pain becomes stronger. Something that used to be my "little illness escape" once in a while is becoming more like a military assignment with the planning that has to go into it and instead of the excitement I once had as a child, I often feel dread towards these occasions now. Trips out now remind me how difficult and different things have become in terms of the life I once led at 14 (before I was in bed ill the majority of the week), which seems like many moons ago! I hope to one day, restore my love for outings many youngsters can take for granted. Although, I assume many of us with illness are so appreciative because we have found ourselves on this path of ill health. 

Once again I would just like to say that the issues stated below are things I personally feel being in chronic pain has done/does to me on a daily, weekly or monthly basis.  Like I said in my previous post, some of these things may affect others, some may not. It is just a personal preference of issues I think many of us may be faced with whilst dealing with chronic illness. We are all different after all and everybody is entitled to these thoughts and feelings so I am not expecting everyone to agree with the below.  As always I love hearing from others in similar situations and I'm always really intrigued to know if any of the posts affect you in similar ways, so please get in touch and let me know! 

The ways in which I find pain affects me mentally are;

Knocks my confidence - Although this may not be obvious externally, I feel being chronically ill from the start of my teenage years has made a huge dent in my confidence and self esteem. Its hard to believe my job was to once greet clients into a hair salon and speak to strangers as now, you really could not pay me enough to do so. Whenever I go out, I tend to 'cope' by looking at the ground, especially when I'm in my wheelchair. Usually in fear of seeing people I once knew from school. I don't feel like I could ever approach anyone and to be honest I rarely think of one thing I like about myself whilst feeling consumed in pain. My body doesn't feel like mine, it feels like it belongs to my illnesses. My body has also changed a lot over the years, dropping a huge amount of weight and seeing my body look bony yet swollen from my internal problems is not something I am particularly fond of. When every fibre of your body hurts and causes you pain, it can be difficult to look in the mirror and love yourself knowing the upset it causes you on a day to day basis. I hope in the future, my confidence can flourish and I will build upon my current circumstances in this department. 

Unsettled - Being chronically ill at this young age for a long time, has really unsettled me. Not only in my lifestyle but in its overall abnormality. In the past, I have felt so bitter towards why my life has turned out like this. Why am I ill when I am so young? Why now?  Why am I the only one out of my friends with chronic pain? Surely this isn't normal for a young person? These are usually the thoughts that rattle my brain most often. Don't get me wrong, I would never wish to trade places with anyone, but I have really found it hard to come to terms with how everyone else's lives can carry on and change for the better yet I become more and more isolated and ill. I often feel anger towards what life has become and how abnormal being chronically ill makes me feel, which is a quality I absolutely despise. Consuming pain seems to have robbed my happiness.

I am often always thinking along the lines of something I call 'life reflect'. What I should be doing at my age, compared to what it has actually become. But I've come to realise that its probably healthier for me to have a moment to reflect and cry over these things. I often describe becoming chronically ill as the loss of a life. Some may agree some may not, but how things can change in just a day and you can go from one extreme of living a life to the opposite of living a life in bed through no fault of your own is a grieving process in my opinion. If I bottled those feelings up I feel it would eat me up inside.

Makes a day difficult to get through - Both a physical and mental attribute of chronic pain. Not only are days painful, tiring and hard to get through but they are also mentally exhausting. Whilst trying to cope with pain and attempt simple tasks it becomes incredibly difficult to get through a day.  When you open your eyes and are faced with how much pain you have instantly, it builds up a barrier of even feeling positive or content in your situation, especially one that can not be eased with much pain relief in order to function a bit better. It's bound to take its toll, I think this one speaks for itself.

Fear/Anxiety - I have noticed an increase in my anxiety over the years. Because symptoms and pain can often be particularly frightening, sharp and tend to change quickly and often I have become quite fearful of being somewhere I am not content with whilst in pain. The best way I can think of when I describe this is that because I feel a loss of control over my body and how a certain symptom can creep up on you at any point in the day, you never know quite how bad its going to be on the Ehlers Damlos Syndrome scale which lets face it, is never too pleasant. My best coping mechanisms are to usually shut myself away in my room to try and get through it without too much commotion going on around me which is difficult to do when you have company. I like to be as settled in my surroundings as possible, to be honest the only place I really feel relaxed and able to be me is home.

I fear being out and about with a friend and having to hide how much pain I'm in, or even not being near home knowing how panicked my pain makes me feel. I am usually apprehensive on agreeing to do something because I hate being a let down and then having to cancel. Luckily my best friend is brilliant, she will push me in my wheelchair when need be, drives me places when I am not able and knows that I cant be ready by a certain time with unpredictable pain or obstacles. Yet I still feel very alien like and a burden around people. I know they probably don't think I am but when a disability is so obvious its hard to not see it as a weakness. Fear also comes into play when thinking of the future, just last week I was told at an appointment that all they can really do for a patient like myself is keep them in the loop for check ups every few months, other than that there isn't much HELP with medication or cure. I've always know this would probably be the case but actually hearing it is heart breaking, nobody wants their life to consist of poor health and being in bed, especially when they are only young.

Emotions -  It's no shock to anyone with chronic pain that your emotions are sometimes a huge role in acceptance of an illness. I often feel a good cry brewing and feel I might burst if I don't quite let it out. This is obviously a lot of anger, frustration, confusion and acceptance all rolled into one big tear fest. There are  also emotional struggles with how an illness can make you feel abnormal, isolated, helpless, suffer in forms of pain, difficult friendships or relationships and not meeting the goals you set yourself. Every goal I think of feels so unreachable knowing the effects of chronic illness. I love the music industry and I've wanted a career in that for a while now yet realistically I don't think its going to happen. Having to give up or pause my hopes and dreams is not something any young
person should have to go through when their lives should just be beginning. Knowing how others have had to give up dreams in sport, dance, education and more is so heart breaking. The more I think of it the sadder it makes me because it shouldn't have to be that way.

Depression- This is obviously quite a taboo subject in this day an age, I feel quite nervous to even be typing about it as only close family members (those in my house) know that I suffer with depression and have for many of my years since becoming chronically ill . It's not something that is highlighted much, especially in young people and many people, including myself are embarrassed about the way that they feel. Before I start, everyone obviously has their own definition and scale as to what depression is/does.

We all want the best for ourselves and our loved ones in life, although its a given that nobody's life is perfect. I think people can still go about living their daily lives with depression as relatively moderate as can be. There are things to keep people busy, work, socializing, distractions, although still incredibly difficult for people to get through these days, but things can be seen or done as a great distraction. I for one have always wanted to be the best version of myself, learning and growing along the way. I was unclear of what exactly I wanted to do career wise like most teenagers but I knew that I wanted to work hard and do what made me happy. I always felt like I had my whole life ahead of me to worry about things going wrong.

Never in a million years did I think my life would drastically change at 13, that my days would be ruled by an illness and that I'd struggle with depression for many years as a result. It didn't even enter my mind as a young girl, the awful effect that pain could have on your state of mind. This is where I really struggle as I've forgotten how to heal myself and relocate my happiness ever since my pain came along. Its also a worry that if this pain is to never leave me, or get worse (which I am told by doctors it probably will), that I might always be this unhappy.

When you're chronically ill, its not as easy as taking your mind off of it by doing something as a distraction. Actually, nothing winds me up more than when this is suggested by others. With EDS it's not that easy to get up, plan a full day out, come home and keep repeating that pattern over and over until you feel happier. I obviously know that my depression stems from having to cope with an illness from a young age. Everywhere I go my mood follows me like a cloud of thick smog over my head. Everyday is a reminder how unsettling things are.

I don't feel I should go into huge detail about my own battle at the moment, but I'm sure many of you in similar situations have suffered with depression too when a situation is out of your control. Some days it consumes me to the point I feel a numb, broken, exhausted, breathless and a fragile like state and some days I am better at hiding how much I am struggling. I often say to my mum that all I want in life is to be happy, I would cope with pain all my life if it meant I still had my happiness. This doesn't seem to be the case, I've tried medication to help this but I didn't like how it made me feel (almost like a fake state of happiness yet nothing about my situation changed i.e - I was still feeling worse in my health), relaxation/meditation, hypnosis and other options. Different things work for different people and hopefully in time I will find something that helps to supress my sadness. If any of you can think of anything I would be intrigued to know too!

Right, that's enough rambling from me for today! I hope that you can relate to some of the things I have written above.

As always, thank you once again for taking time to read this post, I really do appreciate it.

You are welcome to leave me a comment below and I will email you ASAP.

I hope you are as well as possible.