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

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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.

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.

Rare Disease Day 2015

Image: RareDiseaseDay.org

On Saturday March 28th it is Rare Disease Day. Rare means that only a small minority of the public will have these specific illnesses, however the more that people are aware the easier these diseases will be to diagnose in the future. There are over 6000 different rare diseases to date affecting millions of people.

Rare diseases don't just solely affect an individual person, they affect an entire family. Awareness will help more than one person and this is why it means so much. When you are diagnosed with a rare illness its often difficult to process and more often than not, when something is diagnosed as rare it is much more difficult to treat. A rare disease often flips a typical world upside down. They have the ability to affect and drastically change your everyday life when you least expect.

For those of us who deal with rare illnesses/diseases, it can be a very daunting, isolating and frightening period in life. Any form of progression in your diseases is slower than most. Hospital appointments seem to fly through the letterbox, families are searching for doctors who specialise in specific medical fields to try to help and life changes drastically. During testing times with rare disease, you go through many emotions as you try to adjust to your new situation and diagnosis.

Awareness for rare diseases plays a vital key in all of our futures. It counts as a step towards things such as scientific research, better medical care plans, more knowledge for those in the medical profession, more frequent/quicker diagnosis, new procedures, specified support and care as well as giving these rare conditions the voice they so deserve.

There are so many people in this world fighting a rare disease, with incorrect or limited resources as well as a lack of understanding for their specific health issues. All these steps will eventually add up to a better quality of life for those suffering with rare disease.

Rare disease day is a day dedicated to awareness, in any way shape or form. If you have an illness and have become sick of people not understanding or knowing anything about your disease or just want to help the movement of understanding of these illnesses, then please get involved with the cause. Not only will it help you, it will be a form of helping others who are also in your situation.

So please, let your voice be heard. Whether this be raising money, telling others about rare illnesses, speaking of an illness on social media with a hashtag, getting involved with local events or even starting your own event. If you feel you are able to share a story about your illness or rare disease then please do so here; 

http://www.rarediseaseday.org/tell-your-story/
http://www.rarediseaseday.org/events/world

I also invite you to share below in the comments the name of your rare illness/disease as a way of spreading awareness and educating myself and others. 

Disclaimer - All views above are my own opinion. I have not been approached to do this piece of writing, I just feel it is a fitting subject to my own situation with rare chronic illness, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Fibromyalgia, Mast Cell Activation Disorder 

The injustice of living with chronic invisible illness

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In July 2014 I posted a detailed blog post on 'The frustrations of a chronic illness'. This post went down surprisingly well. I wasn't expecting half as many of the views that it gained. I was overwhelmed by the amount of comments, shares, re tweets and most surprisingly even a Facebook share from the website Inspire (which my mum has been an avid reader of for many years now), that it received within a few days. It felt so good to know that what I had written had possibly struck a chord with some people and they too felt all or some of what I had spoken about.

This is a subject that doesn't really disappear, so I felt the need to write another post based on the injustices that come along during chronic illness in hope for it to add towards a continuous movement in the process for those of us who have an illness to stand together to make a change. If we go quiet about this issue, it's not going to take us any further in progress or get us noticed in changing the world's perspective on how illness can affect young people, teens and those with rare disabling health issues in more ways than imagined.

Whether it be that we are feeling judged or being verbally judged by others it's something that is difficult to just accept and be OK with because quite frankly, it's not OK. A lot of opinions and frequent comments received are based on how well you appear to look on the exterior standing or sitting there in front of someone. It's as if make up, a smile or your personality must mean all is well in your life. In some circumstances this can be a good facade, however when the comments seem to be constantly given, it can begin to grate on a person a little. This is based on first hand experience I received in previous years, it's often upsetting, unkind and unfair yet we are often put off defending ourselves because it can feel like losing battle.

Being told 'you look well and you would never know you are sick' has always felt like a back handed compliment to me. I know people mean well however it makes me feel like because my illness is rare and misunderstood, it's also maybe slightly irrelevant to others. Those commenting on your looks don't see that everyday is usually a bad day, low mood, the effort it takes to complete the smallest tasks and the amount of medication you possibly take during your day to day life. They just see the present you, who is usually vacant from all the pain you are trying to comprehend and cope with. Pain that can often force you to live a life with limitations, yet there is no obvious sign of this to others.

Hopefully, in time, I may grow a thicker skin towards these types of assumptions. Obviously this isn't necessarily an insult to some in life, some people can find positive aspects in these comments, it can sometimes give them a boost. However on the opposite end of the spectrum, I know for many of those that are chronically ill, this process really can be seen as a sign of dismissal. I have come to gradually understand that for those who struggle with people not understanding, we don't actually need to convince those who don't believe in our illnesses of 'our world'. They will most likely never understand. However it's through learning and hearing of the misconception on invisible illnesses that it can affect us as a whole community emotionally.

You often hear many horror stories of how people with 'invisible illnesses' have parked in disabled bays and had inconsiderate members of the public make an assumption based on how they look physically and therefore make a scene over how they are not disabled and not entitled to park in a bay. I personally (and fortunately) am yet to be in such a situation, I do have a friend with the same illness that has. I often wonder what these kind of people deem 'disabled'. People often appear to instantly dismiss that your illness could be as bad as you say or describe because they can't physically see it, until a wheelchair or aid is physically involved or seen. Just because on the outside you may look young enough to not be 'disabled' doesn't make you fit, healthy or able and its a shame this isn't something that is one of the first things to enter a persons heads or seen as being possible for young people in this day and age.

Things such as fatigue, weak joints and muscles, breathing and lung problems unfortunately are not physically obvious but valid reasons for being disabled. I would express how it is quite sad that there is a general assumption that young people can't actually be disabled if you base this on the assumption of looks. Maybe if they spent 5 minutes with the person they have judged they would see that actually their invisible illness limits their abilities in a short period of time in daily life.

With rare illnesses, there comes the battle of finding the correct doctor with enough knowledge for you to reside under their care. During appointments, you ask for the help of tools for you to gain a better quantity of life. In my opinion these include, medications to help ease or slightly suppress your pain in order to function better, specialised physios and local support and knowledge from a GP. There never seems to be enough specialised care available to those who suffer with debilitating illness. People travel up and down the country to attend a 20 minute appointment a few times a year with a specialist consultant. You often wonder how you will ever have the correct care plan or tools to gain a better life with such limited options available. It can be infuriating to go into an appointment and feel like you haven't progressed or achieved what you aimed. When you tell doctors what your life has become (bed bound for the majority), you are referred to things like the mental health team or anti depressants instead of support of a specified care plan.

Then there's the injustice of the social aspect of your life once you become ill. You miss out on things that are common in everyday life. Your ability to socialise is usually interrupted by being unable to manage your pain and fatigue, you lose friends and you often feel like you lose sight and a part of yourself and a common reality. The ability of feeling like you have a place in the world other than just being chronically ill or disabled can often plague your mind. Your independence becomes slim to none, you have to give a lot of things up but still have the mentality to achieve. Like I have said on twitter, I truly take my hat of to those of you out there who still manage to attend school, college, university and work. I seriously think you are all amazing and inspiring!

Your health problems will never just disappear from your life, in fact when something feels so obvious to yourself yet invisible to others it can often make you rather down and depressed. Pain is a constant thing you are dealing with every minute of the day, in fact in some cases our illness is actually the most consistent thing in our life. It is certainly mine. So the fact that this isn't obvious to the eye can make it harder to cope when you appear to be 'normal'.

  Pain intervenes with 99% of the want,will but most importantly the ability to do things. However the scariest factor is often that this is a daily process that we must go through and overcome.  

Getting through the Christmas season whilst chronically ill....

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As someone who has often found it very difficult to get through the Christmas season because of experiencing chronic pain on a daily basis, I felt like I was finally in the position to be able to write a post on what may be going on in someone's life around this time of year if they are chronically ill. After all, I have spent more than enough years feeling isolated and abnormal from my own illness at this time of year before I started blogging.

For the past 7 years, I have always been extremely apprehensive for the festive period to arrive but more so, for Christmas day to arrive. I think its fair to say that this might be something that others find difficult to fully enjoy too if they are in similar situations where illness overtakes the spirit of Christmas or festivities. Whether you are chronically ill yourself and can relate to this post or you are a parent to a child who is chronically ill, this may hopefully give you an insight into the down moments that can come at such a joyful time of the year for so many.

One Christmas that really stands out to me where I felt like this illness had really reached new heights of getting the better of me was on Boxing Day in 2010. I was sitting at the table waiting for the family to arrive for day two of Christmas and I just remember feeling like I was drowning in how isolated I felt. I wanted to sob my heart out over how overwhelmed my illness was making me feel so I grabbed my phone, joined an EDS forum, wrote a thread and had a reply within minutes from such a lovely positive girl of similar age. It's safe to say that message gave me hope to get through those next few days when all I wanted to do was bury my head in my pillow and cry. I had finally spoken to someone with the same illness and it just gave me the confirmation I'd been searching for that it wasn't just me feeling so out of touch from life.

Once October ends, Christmas (as well as the thanksgiving holiday for those that celebrated last month) seems to swiftly approach us and it's not always easy to just forget pain and enjoy the moment. Pain seems to overall anything and everything at the best of times. It's an evil dictator the majority of the day. Schedules tend to become busier around this time of year, fatigue and pain seem to surge. It's often hard to adjust from being in bed to having family or friends constantly visiting, possibly some shopping trips out and getting yourself organised for Christmas. It can feel overwhelming and draining for people with chronic pain. Emotions may run high for some of us and moods can be low from what pain they may be experiencing.

Some people, including myself find it hard to want to celebrate whilst in pain, every year it passes and sometimes I know for me personally, I've taken the day for granted. Only looking back do I realise nothing in that moment would have changed my pain, but my attitude could have been adapted. I wont be hard on myself for feeling like this in the past because it was and still is a learning experience. My mum would always say 'treat it like any other day' but I didn't want that, Christmas is supposed to be a really special day of the year and I wanted it to feel good and be enjoyable. Instead I felt isolated and abnormal with all the pain I was experiencing. Pain whilst eating, drinking, sitting and standing, fatigue from doing absolutely nothing. This is something I deal with daily but it just felt even more bitter-sweet and unwanted at Christmas.

I have experienced the majority of the festive seasons in my life as someone who is ill. We have lots of family Christmas videos of the 90s and early 00s and in every year without fail, even as a child I had either been up all night being sick with stomach pains, having pots tremors (which obviously made no sense back then) or had a chest infection, cold, flu symptoms. My poor Mum used to say Christmas Eve was like a hospital ward for myself and my brother. If it wasn't me with something wrong it was him, or both of us if Mum was unlucky.

I definitely count my blessings daily, it always helps me to keep a perspective on things in my life, but especially at this time of the year. Things such as family, their health and happiness, having a roof over my head, food on the table and being more fortunate than some people and family's in this world. However for a long time, even as a child despite my family's huge efforts, pain has always ruined my experience of Christmas Day. However over the last year or so I have tried to adapt my thinking pattern and instead remind myself that when this time of year eventually arrived I would instead try to figure out the aspects I love of Christmas in advance. These are things such as; the decorations, the family being together, Christmas music. I'm glad I can now give credit to the parts of the holiday that I can take some enjoyment from and emphasis on making the most of these things rather than focusing on how difficult and unpredictable pain may make the day.

Holidays and poignant points of the year can bring out many emotions in someone who has a chronic illness. Not only does the New Year loom, where you know that when people wish you a happy and healthy New Year it contains small print that this probably doesn't apply to you, it's also another year over experiencing pain whilst being quite sure to enter the next with just the same thing you wish you could leave behind. That might seem very negative, but personally I have found over time its easier for myself to try to digest and accept my illness in this manner over believing there might be a change and getting more upset in the long run. Chronic means long term or incurable after all.

The majority of us may not be able to actually join in with aspects of Christmas or New Year parties, festivities, physical shopping experiences. This can often make you feel worlds apart from your friendship groups or normality for someone of your age when the general talk of the month or season is of these topics. Instead of dwelling over something you can't change this year maybe its easier to take the approach of being happy for those that do get to experience these points rather than jealous. I used to often rack my brain with thoughts over why I couldn't do what others were, don't get me wrong at times it can still be a really sensitive topic to adjust to. However, right now I just have to accept that its not going to happen at this point in my life. If I can't change it at this moment in time, I shouldn't let it worry me, get the better of me or drag me down. That perfect saying about holding a grudge comes into my mind, 'Holding a grudge is like allowing someone to live in your head space rent free'. For the circumstances that can come with chronic illness, if you can't physically change them on a certain day or point in your life, let it go for now.

This year rather than focusing on how much pain may be interfering in my day, I am going to try and think of the positive aspects I can take from the day instead. 7 years on living with daily controlling pain, I have come to accept that this year pain will be no different and it's better to embrace and acknowledge its presence rather than fight it. Instead of doing what I did in the past which was focusing on how much the pain was ruining my day I will take the approach of encouraging and focusing on the parts of the day that make me happy. This is not something I have tried in the past so this is definitely a new approach and ball game for myself.

Everyone knows their limits and how they deal with a situation fittingly. Some people like to be hopeful, some positive, some negative. We all deal with the cards we a dealt in life differently and hopefully find our feet in coping in the suitable manner with our own approach. It's taken me a really long time to find my own technique of dealing with illness at major points of the year. These elements and strategies can change daily, like I always say chronic illness is a daily battle and everyday we adapt, learn, change, grow and most importantly, we have no choice but to find a way in which we cope.

So below I will list the three things I hope will bring me joy this Christmas, feel free to make a mental note of your own or leave a comment stating anything you love about Christmas or what you are looking forward to despite pain this year. (I know a lot of us will be thinking and wanting a new body, heat wraps, V pillows, pyjamas!)

1. I will get to spend time with family as well as seeing my two year old god daughter open her gifts and being more aware that it's Christmas Day. Without trying, she always brings a smile to my face no matter how bad I may be feeling!

2. I will remind myself how fortunate I am to be at home with loved ones. There will be many unfortunate people in this world that will be spending their day in hospitals rather than at home with loved ones because of their own illnesses.

3. I will try to live in the present of the day. Not worrying about 2,4 or 6 hours later. I will take my pain as and when it comes and try to deal with it without over thinking or worrying that it may ruin the aspect or magic of Christmas. Pacing and coping will be key elements I try to take on board.

So for me I am going to watch as many of my favourite Christmas films as possible, listen to my favourite Christmas albums, try to organise and pace myself but most importantly be aware of the fact that pain and illness will be a part of Christmas Day whether I like it or not and to not dwell on this.

I wish you all a wonderful Christmas, A Happy New Year and I am hopeful and wishing that you all have more 'Good days' in 2015.

Thank you for all of your support during the year 2014, it means the world to me! x

Assertive attitude during a chronic illness...

Image: Pinterest Via Google Images

Becoming or being assertive during illness is something not to be mistaken or misused as rudeness or abruptness. Being assertive involves finding the middle ground between passive/aggressive behaviour and trying not to cross the boundaries for either. A typical definition of the word assertive:

'The balance of having self assurance and confidence without aggression'.

When I attended a two week pain management programme a couple of years ago at 18, this was one of the key points and communication techniques they tried to implement into my routine. I remember thinking to myself,  'I don't really understand what becoming assertive has got to do with being ill', but I've come to surrender that it does actually play a big role.

I have found being assertive is one of the key factors when you are chronically ill. It does take time but it can help you mould into a more literate young adult too. Its a sense of taking control of the situation even though our pain may have such a hold over us. Ultimately when you know you will be spending a lifetime to and from hospital and doctors appointments, it can be the voice you never thought was inside of you to getting the medical attention you deserve. All whilst keeping a level head and your composure in your delivery of words. Knowing you are going to be ill for a long span of time or in my own case having an illness that will affect me my whole life, you need to be brave enough to speak up and to be taken more seriously. Especially in cases such as these rare types of illnesses where doctors have such limited information and help to provide us with. Speaking up for yourself will allow people to understand your limits whilst giving the impression of self confidence and awareness.

When it comes to being assertive during a chronic illness, I see it as standing up for myself in a dignified manner and what I believe is right on this journey during my medical appointments and illness related issues. Not being too timid or shy to express what I am really feeling and what I would like to happen in order to help me and the pain I am experiencing. There may come an anxiety with being assertive especially in some young people. It can almost seem frightening to speak your opinion whilst not wanting to seem too aggressive, rude or demanding at a young age. These are all qualities to avoid in your delivery of assertive communication. I was very much a people pleaser during the early years of being diagnosed, but the more I listen to my body and its limits the more in control I felt of a rubbish situation. After all, YOU are the key factor in expressing your limits and opinions because after all, YOU are the one that lives every minute and hour with the condition.

This particular method is also a massive factor of age. Would I have been this assertive a few years ago at 17, definitely not. However, I have experienced that the longer you are ill and live with an illness the more you grow as a person and the more feelings and emotions you have towards your health issues. It makes you want to fight for a change in your life with pain in order to receive a better quality of life for yourself.  During my time of being under paediatric doctors care, at first I would let my Mum do the talking and answer when I was spoken to by the professional. My confidence was at an almighty low, nobody could give me answers to our questions and it all felt very overwhelming. I just wanted to escape reality. In all honesty, I felt like a timid child who's opinion wasn't relevant because I assumed a doctor knew more about the condition than myself so I kept my opinion to myself. This is completely untrue and I often wish I had changed my communication skills sooner, whether you are 13 or 45 and experiencing pain and have an opinion based on first hand experience, please stress this to a doctor. No matter how foolish you may think the way you are describing it sounds. I remember saying I felt like my stomach had been poisoned and being laughed at by the doctors and students in the room, but I was glad they could see the seriousness in the way I delivered how I was feeling. I didn't laugh and I didn't cry, I just wanted for them to see how serious I felt about how difficult it was to deal with the pain.

Becoming assertive will always be an evolvement in a chronically ill patients life, I wouldn't say I am 100% assertive in life. Sometimes I feel to poorly to care and just want the day or appointment over with, sometimes I feel too emotional at lack of answers and awareness on doctors behalf that I just accept what they are saying, then go home and get myself in a state over the situation. Each appointment is a learning curve in itself, sometimes not in ways we wish, like progressing in health but growing as chronically ill patients with correctly spoken opinions needing to be expressed.

It also has a lot to do with research and understanding your illness, trusting in your pain you experience, trusting yourself and honesty. EDS patients know more about their health issues and life with EDS than medical professionals, that's one thing we can probably all agree on. We often learn the hard way during diagnosis that doctors cant always piece together multiple symptoms. More often than not with these rare illnesses, medical professionals can pass a lazy diagnosis off as a common problem when it seems they think you are a lost cause.  When you are young and tend to have re occurring health problems, doctors may try to dismiss your pain as anxiety, school issues, or possibly being someone who worries. I always knew in my heart that there was more to my health issues and it was so difficult to process for years that nobody was listening to me, I began to doubt myself at times but this wasn't my issue or anyone else's that may be going through this, it was the medical professionals who wasn't truly listening to my problems.

 You can learn a lot from a short time in illness but more so for prolonged periods. You will probably feel so fed up with the process at certain times however sometimes you need to separate your emotions from your thoughts in order to be clear in your delivery of words. For example, sometimes we can get too wrapped up in sadness, depression and our emotions can get the better of us leaving us in despair therefore affecting the way we say things. We may say them in anger, frustration or jest. If we are in a bad place with pain, we may have intentions to go in to these appointments all fired up and ready to express our anger but this will not get you anywhere fast. As long as we are able to see the signs in knowing when we are crossing the border on aggressive/passive behaviour, we can only learn and grow as people and as patients.

During my time on the Bath pain management programme, there were times when I would be far too passive in my communication and other times where they felt I was heading towards aggression. They would always point these moments out to me straight away. I didn't really want to hear it at the time but it has helped me have a better understanding of my communication skills straight after I deliver them. For certain, looking back I can now see that the majority of those down moments on the programme were based around my emotions. It was such a difficult time in my life to get through, but looking back I can take forward some tips from sessions and be proud of myself that I even attended, despite it being the hardest 2 weeks of my life. I often don't really know how I got through it.

I will for certain be reading over my own advice for my upcoming appointments in the new year. Sometimes I need to be reminded in order to prepare for an appointment. I always get quite down around these points, although one thing I've come to accept is that they cant tell me anything I don't know at this moment in time. I know its chronic, I know its painful, I know I cant manage much in life but that's something to get through daily rather than over analyse. Having a heavy schedule of appointments can be frightening and daunting for a young person and sometimes we completely forget all that we want or intended to stress to our doctor in the moment. There have been so many occasions where I leave an appointment and think of all of the things I should have and could have said. I will keep myself calm, composed, dignified, pleasant but eloquent in my delivery of how my illness is affecting my life day to day whilst respecting the person I am speaking too.

 Can you think of ways in which you could become more assertive in your life with illness?
I hope that you can all take some positivity from this post too and as always I hope you are all feeling as well as can be.

Tomorrow....

Image: Weheartit via Google Images

Thanks to the title of this blog, I now have Annie the musical songs stuck in my head. Fabulous!

Tomorrow, is the title of this blog because it's something that has had me thinking for a long time. This is more a play on words for, the future. I used to be incredibly wrapped up in worrying about tomorrow and what life may bring me. To an extent, I still do. My worries stemmed from knowing I will now live as a disabled person or more so how life could or would turn out because of my health and disability. This fear reduces me to tears a lot of the time but it's also not somewhere I should ontinuously focus upon. I have been so consumed inworrying, that I sadly missed out on the present and therefore saw many years of my life pass me by up until this point.

This post isn't about pain, there is no changing how bad that may become or is progressing. It's about unnecessary worrying and stressing for days which haven't yet arrived. Something that I did pretty much everyday and many of you may do whilst living with chronic illness. Inevitably, Pain can give you fear, no question about it, yet thinking up situations that are yet to arrive can also make you convince yourself of things that nobody can predict. Usually, these can be quite negative thought patterns. We create a terrible image in our head of the worst case scenarios of what life has the potential to be like, when really, why is it so hard for us to spin this into a positive light. It becomes easier to thin so negatively because we can't see the hope in our lives.

There's no doubt that a chronic illness will have a massive impact on your future but we can only let it have so much control. More so on our life out look because physically control, can often be left behind in a lifestyle like chronic illness. When I think of it, my own illness has control over pretty much every part of my body apart from the one thing that seems to be quite invincible, my soul. Illness has changed me as a person completely, yet I also don't want to give it the power to corrupt me. The more passion I feel towards making a change towards people's perceptions on chronic illness and disability in young adults, the more it lights a fire in my belly to want to do the one of the most important things I thought this illness had taken away from me. The more I want to find the positive in life despite my pain or situation not changing. Those important things such as believing in myself more, my goals and my ability to achieve despite my chronic illness and disability. I hope the same for you all too.

The fear of being a failure in my one chance at life is actually more distressing to me than my actual illness. I am starting to finally see I have slightly progressed as a person even though my health is sadly, no better. I used to cry everyday for hours on end over pain when I felt like I had no one to relate to. That would snowball into negative thinking patterns about life in general because it just felt so isolating and abnormal. That would the  cause a domino effect, rapidly changing my mood, impacting how low I would become in minutes then leaving an imprint for the rest of that day. This would even roll into the next day at my lowest points with illness. It was a never ending cycle. But now, I try not to let those thoughts or situations drag me in or consume me as much as they once did. At times it was almost like mental torture, as I'm sure it becomes for many others in similar circumstances.

I'm not saying I still don't have my off days during the week where my thinking pattern will shift back to old habits, we all have our down days, but the frequency has definitely and thankfully shrunk (I used to have panic attacks over 15 times a day at one point). I don't make myself feel bad for those days either like I once did, I try to accept them for what they are. A bad day rather than a bad week. On those really bad days, which can be pretty difficult and intense to process, I now sit and try to analyse rationally in the best way I can why I may be feeling so low. Am I just feeling down, low or angry at chronic illness life or is pain the main instigator today. Sometimes I am annoyed at life in general, everyone is guilty of that ill or not and we are all worthy of those feelings. It's definitely a working progress and daily battle to overcome.

Yes I can worry and stress out a lot of the time over my illness but I don't want it to define me as a person. I don't want it to define the things I can and can't do as a person either despite the obvious and at times, upsetting obstacles it may bring (controlling pain, wheelchair, limited energy, isolation, separation). Those obstacles at times can feel like absolute mountains and therefore very difficult and overwhelming to climb. I certainly don't want disability to rob and drain me of happiness everyday and I really don't want it to stop my goals in life. It is just a shame that because of health issue those goals that any normal person my age has in mind, may seem to be much more limited and harder to attain because of my limits.

Another thing I am working on as a person is not setting myself up to fail in those 'achievement goals' either (yes I can finally accept that I wont be a spice girl, damn). I used to think in order to be achieving you had to be doing amazing things with you life. Whereas when you are in chronic pain and have an illness an achievement can come in setting such a small goal or even getting through a tough day of pain. For instance, having someone round for a few hours, being able to have more up time out of bed during the day, finding some energy to study an educational course from home, taking a rare trip out on a day where pain feels too much to comprehend. Those are just some things those of you reading this post might not be giving yourself enough credit for. We have to remember, our bodies are sadly not normal and these smaller goals are a big deal to people like us! Rather than beat ourselves up everyday over the things we cant do, we should try and tell ourselves, actually well done.

Day to day achieving and  living. It's not easy at all, its actually quite distressing but we can't keep being dragged down by something currently out of our control. There is no magic wand or magic pill for this illness or many other rare conditions, I wish there was. I can't replace the faulty gene that is taking over my body.

Whatever I can manage and more importantly adapt to my situation, I will try with all of my might to do if I want to achieve it. The goal of my blog was never to want attention, pity or for people to feel sorry for me. It was to relate to people in similar situations, be as honest and open with my own struggles and slowly start to heal. Not in ways of healing my health but in ways of acceptance. Typically from talking to others who also live a similar existence. I felt shattered as a person for a long time, being incredibly young, this felt beyond shameful. I could never fully understand what was happening to my life and why it felt like it was falling apart.

I look forward to being able to feel some growth and improvement on how I am learning to accept my illness. I have definitely been proved wrong in now seeing that even when your health, illness or pain may deteriorate your mind can become even more stronger than you ever believed when you least expect it. You feel you are stuck at times, but being reassured you are not the only person your age going through something so abnormal is a worthwhile feeling. It's hard to imagine life or your outlook becoming more accepting when illness or pain is progressing in your everyday life, but it can be a possibility for all of us.

Despite the amount of pain that comes with Ehlers Danlos Syndrome, POTS and my other illnesses and how frustrating they feel at times, it's a life. It's not the most ideal life for a young person or any person of any age in fact, but it is a life which is a lot more than some can say. I hope that for those reading this, despite your own diagnosis, you can start to see it like this at some point too.  

My diagnosis journey took 6 years, I was 15 by the time I was diagnosed. In early 2015 it will soon to be the 5th year anniversary of my diagnosis date. Altogether, that's nearly; 11 years worth of worrying about my future because of an illness. Over half of my life to be precise! I just want to let you all know, it's not worth analysing the future to the point where we become so unhappy in ourselves that life seems too hard to adjust, accept and build upon.

So I urge you, if you are just in the early days of diagnosis or living with a chronic illness. Please don't convince yourself that your illness defines you completely and please don't over analyse the future. None of us are handed out a guideline of our futures or promised tomorrow after all.

The Power Of Talking To Others In Chronic Pain

Hi Everyone, hope you have all been as well as possible.

 I recently celebrated my 20th birthday and in my previous post I mentioned how I have never quite enjoyed "special occasions" since becoming chronically ill. In fact I absolutely dread them and will feel extreme panic for weeks in advance. I usually cannot wait for the day to come and go and I will try to avoid talking or thinking about the occasion, (strangely I used to be the child that would start my birthday countdown on Jan 1st!). However, this year I really quite shocked myself, because it turned out to be the most relaxed birthday in terms of how I felt in my mind, that I had had since I was about 12 years old. I seemed to have taken a different approach to the day and I instantly knew why.

I had been awake all through the night on the eve of my birthday with really intense sickness, joint, bowel, stomach and bladder pains. I was starting to stress over my birthday being just like the years before. I'd wake up, feel intense pain like always, analyse how my life had changed in a year, how I had only got worse and how different I feel to other people my age, then spend the day really crying no matter how hard my parents would have tried to make the day really special. 

It may sound strange but I felt that at 5am that morning after no sleep whatsoever, I had a breakthrough. I knew I was going to be in lots of pain when I finally woke from a sleep, even more so than previous years but after getting my cry out of my system, I told myself I would try to take the day with a pinch of salt and attempt to push my concerns out of my mind for a few hours.

One of my main concerns is that people will always think I am ungrateful because of how down I feel on these occasions. How can everyone else be happy for me on my birthday when I cant even think straight with all this pain. So like I predicted, I woke up in more pain than any of my previous birthdays but felt an unusual sense of calmness. Now a lot of you may think I am completely rambling here considering the title of this post doesn't even involve the word birthday, but bare with me here.

I truly believe I got through this birthday so much better than any other because I no longer feel as alone or isolated in my journey with chronic illness. The reason I don't feel alone is because of my blog. It has opened so many doors for me in regards of speaking to others in spookily similar pain experience's, EDS sufferers, POTS sufferers, Fibro sufferers, chronic pain sufferers and just even being able to experience how everyone is there for each other whilst going through such a difficult time themselves. Seeing how kind and helpful everybody is on my twitter feed, whether it be offering advice on how to deal with pain, to helpful techniques and tips, to being open and honest of their own pain is really so helpful and has started to lift my cloud of isolation I felt for many, many years. My depression stemmed from my illness is still very much around, but I can now see such a difference in whether I'm feeling depressed over illness and its controlling debilitating pain compared to whether I'm feeling depressed over feeling isolated and abnormal.

For so many years, I have compared myself to friends and family in my age range who are in a completely different situation in life. I would always compare myself to them and how I felt I could not achieve anything of the levels they were. Being chronically ill means I barely leave the house, lead a restricted life and am in intense pain on a daily basis. I've never in my life met a young person going through this too who would just instantly get it and be in the same boat as me. I have friends at college, friends in full time work, a cousin who is now a mum, a little cousin who is an aspiring footballer, a brother who is a manger of a department of transport. Basically I have many people around me who are making a success of their lives that it always made me think, well why is my life not letting me achieve in ways like them. I never felt jealous, I just never could understand why I couldn't make something of my life and seemed to be stuck in a disabled body. I felt like I had nobody around me that really, truly understood how difficult it is trying to cope with being chronically ill whilst being so young. Nobody to really talk to.

I'll be honest. I started this blog in July of last year in a bid of desperation. I had only ever spoken to one person with EDS in the three years I had been diagnosed. It was the first Christmas after my diagnosis and I felt so desperate. I signed up to an EDS forum and spoke to a wonderful girl my age who was so positive. She gave me the initial boost and hope that there was some young people out there with EDS and chronic pain. But the novelty soon wore off and I felt more alone than ever for 2 and a half years. More hospital appointments, more tests and more reasons for me to feel even more different and abnormal to everyone around me as my life became even more limited. Looking back, I almost panic in worry of how I ever dealt with my chronic illness alone for a lot of my teens. That isolation was causing me so many panic attacks everyday that I wouldn't wish it on anyone. I've always had my mum and dad as support but there is only so much they will ever understand and that I would tell them, I didn't want to worry them anymore than what they already feeling over my health. Unless you have a chronic illness, you will never know how much pain and life disturbance it can bring you.

What I am trying to say is that talking to others in similar illness related situations, whether its been EDS or similar chronic pain conditions, has helped my mind set more than any medication or pain management programme will/ has ever done. Just reading about mirrored symptoms, lifestyles and pain can make you feel not so alone on your worst days. Those people have also given me a boost in moments of despair, I remember them and I don't feel as alone, which personally for me is such a huge step. I almost wish I would've started this blog years ago! I have been emailed by some wonderful people who have been so open in their own experiences and keep in regular contact with them. I have made an amazing friend who I speak to everyday who has really helped me so much! Finally somebody who I can compare myself to on a scale that no longer makes me sad but relieved that I am not alone. It really has lifted such a weight off my shoulders on my worst days. I know my pain is getting worse and increases as the months pass, yet I don't feel the fear as often as I once felt of going through it alone. I know I will now always have somebody to talk to and somebody who just gets it! No desperate attempts of trying to explain a pain, symptom or why I can't do something like a typical girl my age.

My goal is to continue to raise awareness for Ehlers Danlos Syndrome, Postoral Orthostatic Tachycardia Syndrome & I hope people who may read this can relate to my journey. If you are dealing with a chronic illness please don't attempt to go through it alone. There are lots of medical forums and online support groups that my mum signed up to years ago that are a wealth of information, (by all means, if you are too young, get your parents consent or ask if they will agree to signing up). My mum gets sent daily newsletters on EDS/Chronic Pain related topics and now I am old enough I am signed up to them too. These are really helpful regarding doctors, pain, and all aspects of life with poor health.

EDNF Ehlers Danlos National Foundation - http://www.ednf.org/
Ehlers Danlos - http://www.ehlers-danlos.org/forum/
HMSA Charity - http://hypermobility.org/
Inspire EDS - http://www.inspire.com/groups/ehlers-danlos-national-foundation/

 

Thank you once again for taking the time to read this post. I hope that others out there can take some comfort from this and know that you are not alone in your pain and fears.