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. 

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 

Dysautonomia Awareness - Postural Orthostatic Tachycardia Syndrome

Image: Global Genes via Google Images

I felt this post was fitting for the month of October as it is

Dysautonomia Awareness Month.

For those of you who may not know what Dysautonomia is, it's an abnormality of the function of the autonomic nervous system. To break this down even more, the autonomic nervous system is the part of the human body that is meant to take care and be responsible for control of the bodily functions we are not conscious of completing ourselves. A bit like when a plane goes into auto pilot and knows exactly what to do. Necessary things need to be completed by our  nervous systems every minute of the day in order for us to survive. For example our heartbeat rhythm, breathing, digestive and gut processes are all seemingly completed without much thought from us as individuals. My own battle with this condition lies in a condition called Postural Orthostatic Tachycardia Syndrome or "POTS" for its shorter term.

So here is my own story of my life with this condition in the hope of raising some awareness. If you are reading this and have Ehlers Danlos Syndrome or Fibromyalgia then there is a strong chance you may also have PoTS as an overlapping illness, if you don't have either then I hope I can give you an overview of the condition.

Another condition that is known for being an Invisible Illness (why am I so prone to those?!).  I don't think I usually use my PoTS diagnosis by name because I generally talk about my health as a whole. Which includes first and foremost my Ehlers Danlos Syndrome diagnosis which has since developed into many overlapping illnesses, such as PoTS, Gastroparesis, Mast Cell and more (which are listed in the header bar above). However, since my diagnosis and gaining more of an understanding of my condition, I felt I needed to do a post highlighting just this condition alone. Lately, my own issues with this syndrome on its own have been extremely intense and frequent (despite my dosage of medication) that I feel extremely lucky to have a final diagnosis. It made me realise how many others may be searching for their own diagnosis and could find this information somewhat useful.  Luckily it just so happened to coincide with awareness month.

A quick overview of POTS;

In some cases, it can definitely a debilitating chronic condition. It has involvements of the heart rate and blood pressure reaching and falling to abnormal levels ( changes within seconds from lows of 30 to highs of 150 or more)  palpitations, fainting, dizzy spells, migraines, low levels of enough blood pumping to the heart and brain, chest pains, blackouts, body temperatures, fatigue, sweats, shakes, trembling, blood pooling, slow and fast heart rhythms, anxiety type symptoms, loss of hearing, and more. Fun fact, PoTS can sometimes be misdiagnosed as an Anxiety Disorder until persistent matching symptoms prove a true diagnosis.  Although there are some medications that may help ease the symptoms of PoTS it can sometimes be a trial and error period , that's if they have any affect at all. Some cases of PoTS can be mild whilst others can be life altering, very scary to live with and effect everyday life. Episodes can be frequent and without warning on a daily basis.

How POTS is tested/ diagnosed;

Usually a table tilt test for confirmation of the condition. Regular ECG's and echocardiograms for any underlying heart problems. Being under an understanding doctors care, usually a specialist is also necessary. 

How POTS can affect your life;

Although its a daily condition to deal with, no two days are the same with how bad it may be. I can tell when a really bad episode is about to happen and through fear try my best attempts to position my body in a place I feel most calm and comfortable. I truly despise the process, thought of and feeling of collapsing. It's never a calm situation, not only is it an incredibly frightening for the person having the episode because of loss of bodily function control, it can also be incredibly frightening for those around to witness. I lose any ounce of colour I may have had, go cold but clammy, feel sick, light headed and incredibly limp. The weakness of my body means I lose functions in many ways whilst also becoming a dead weight to move, starting with the loss of my hearing and vision, ability to talk and this is usually when I have the feeling that  my body is beginning to shut down. This is usually followed by hours of shaking, with body tremors and a complete lack of communication on my behalf. I am quite fortunate that currently at the time of writing this post, I don't fully pass out daily, but the lead up to the passing out point happens for me multiple times a day and is difficult to deal with when you know its looming and may happen at any given moment. It's enough to make you petrified for making any plans or having independence.

A bad POTS turn or episode can make you feel incredibly vulnerable, from its physical aspects (trembling, shaking, sweating, loss of hearing, speech difficulties, shortness of breath) to what its doing to you internally (blood pooling, weakness, sickness, fainting). It worries me that I will have a bad experience with the condition when I am out without being around someone who knows how to fully deal with the condition and it often leaves me frightened to be alone for long periods of time. I'm even too scared to drive my car on my own in fear of having an episode. PoTs alone can leave you in a wheelchair. A combination of my Ehlers Danlos Syndrome symptoms mixed with my PoTS symptoms is the reason that I must use my wheelchair.

As I have an overlapping of illnesses its hard to differentiate them at times at times. I never know if its EDS causing the problem or POTS and sometimes on a really unlucky pain day, it can be both!  POTS mixed with Ehlers Danlos Syndrome it is not a very pleasant combination. If you faint (POTS) it will probably also incur you to dislocate or sublux a joint (EDS) depending on where or how you may fall or land. With something like POTS the body becomes weak from the blood pooling in the legs or stomach and not making it way up to the heart and brain. Showering and bathing in different water to room temperatures often become a problem in a PoTS patients.

Weight loss is also something I have found in this condition. Although my EDS, gastroparesis and slow gut dysmotility issues don't really allow me to eat more than a child's meal per day my weight loss comes in frequent amounts from a POTS episode. My body can often feel like it is shaking or having body tremors for hours on end. It feels like every ounce of energy and fluid drains out of me through sweat and exhaustion. Sure enough when I weigh myself the next day I have at most lost 4 pounds just from one episode. Intense to say the least!

On a really bad POTs day I can not often even leave the bed because the fainting episodes are extremely close together, not only is this frightening but its also exhausting for no apparent reason, I can only think that the body and heart are working overtime in order to regulate correctly! Forget even being able to function like a normal human being. Plans may often need to be changed at the last minute, resting should be a priority.

Quick fixes for a bad POTS episode;

SALT!!! - Salt has become my best friend its come to the point where I actually carry around packets or a miniature condiment in my handbag.
Increasing your water intake - 3 litres to be precise but again those with gut dysmotility may find this difficult to drink large amounts like myself. This is because it remains in the gut for a prolonged amount of time. I must say since I found out this tip I now drink religiously from a bottle so I know just how much I am attempting to intake.
Raising your legs on pillows - getting the blood flow up from your feet to your heart and head, be sure to have enough pillows supporting your legs so that the blood doesn't just pool in the stomach therefore making you sick. A small pillow under your bum can also help avoid the blood pooling in the stomach.
Lay flat for as long as possible - rest is essential after a bad PoTS episode. Not only is it dangerous for you to be standing upright, your heart rate and blood pressure levels must try to re regulate themselves.
Full length support stockings - Not the best fashion statement but helpful for the blood vessels and pooling in your legs.
Avoiding long periods of standing - Sit down and raise your legs if you can, get the blood pumping back up to the heart.

Do you have POTS? What helps you cope with this condition? How does it affect your everyday life?

Thank you for reading this post, I hope I have managed some contribution towards awareness.