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

Image - Tumblr via Google Images

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.

Monthly favourites - May - Chronic Illness Edition

I am an avid make up, fashion and beauty blog reader. Originally, before I contemplated starting a blog on chronic illness, I debated on focusing my energy into something similar to the above. However, there are thousands of amazing blogs already in that field that I felt I couldn't really compete with. It felt like a difficult task for myself to break into.

One of my favourite blogpost's to read and YouTube video of choice to watch is other people's monthly favourites. You get to see individual personality, different opinions, new ideas and find some pretty good bargains too! So, when I was thinking of what more I could bring to my blog I felt like I needed to start bringing forward aspects of what makes me happy when my illness feels it consumes every part of me, things I find comfort in and things that have helped me through my month.

From here on out, I will now hopefully be uploading three times a month and giving you,

 My monthly favourites

Obviously, I will try to base the majority of items around what I find has been helpful in relation to chronic illness and chronic pain. However, I will also be sharing some other personal favourites that I've found interesting too. Disclaimer- All opinions are my own. 

Demi Lovato Staying strong 365 days a year - 

This book was bought as a gift for me for my 20th birthday last year. I've been a fan of Demi for many years and knowing that she had been through hard times, I wanted to take a look at her words of wisdom. Demi Lovato has had her own fair share of things thrown at her in life from a very young age, so she has always seemed relatable in that sense. However when I received this book, I was in quite a bad place with depression and anxiety. The feeling had been there for many years and I was struggling to see any positive path in life. I would read the quotes in the book but they would never seem to stick in my mind or make any sense to me at that moment in time. It wasn't until very recently where I had been putting into practise rational thinking that I tried to read through the book again. I have been working on trying to get my head space into a more positive and present way of thinking. Demi's daily chosen quotes are adapted and broken down into everyday life. I went through the entire book with sticky notes writing how these quotes connected to aspects in my own life with chronic illness. I like that Demi admits the feeling of struggle and welcomes the feeling of growth. It is something that I have taken inspiration from and continue to to try and adapt into my own life.

Once Upon A Time - 

By chance I happened to start watching this show one sleepless, insomnia ridden evening and now I am hooked! Based upon classic fairy tale characters who find themselves transported to the real world with no idea who they were in their past, the story unfolds and is gripping. 

This is a must watch for any Disney or fairy tale

fan. I'm three seasons in now and have found its a great show that has been keeping my Disney World withdrawal symptoms at bay. 

Orthopaedic V pillow -

This has been my must have illness item since I was 15. Usually, its for people who are pregnant. However, when my mum told me to try this a few years ago I was slightly confused, I thought there was no way it would be suitable to my situation. Recently, after many years, I realised just how lost I  become when I am without this pillow. On a two week holiday, my sleep was even worse than at home. I was waking up with more neck and back pain, more dislocations and I couldn't get comfortable at all in the bed. I couldn't wait to return home to my own bed and my beloved V pillow. Even though it's awfully hard to sleep with chronic pain, at least you can get semi comfortable in you're own bed with your own comforts. This pillow is so soft and wraps around the shape of your body. I highly suggest anyone with Ehlers Danlos, back problems or nerve issues to try a pillow of this kind. It is worth the money to search for a long lasting, good quality V pillow.  Grandma problems indeed!

Warm Baths- 

Something so simple has nearly reduced me and my EDS body to tears of joy. If you follow me on twitter, you would've seen my tweet praising the Lord (and my handy dad) for my new bath that has been installed. Being a POTS patient, you don't know how life changing this is, it beats standing in a shower 365 days of the year and collapsing daily, put it that way. I was draining myself of limited energy standing in the shower every day, then fainting from my blood pressure and heart rate dropping, everyone with pots knows the drill of the dreaded shower. I can now soak my joints and muscles as well as not worrying as much about fainting in the shower. I am so grateful for this bath and to my dad for his hard work. This has saved me an extra pots episode a day.

Post-partum Stomach Support 3 in 1 - Stomach, Waist and Pelvis 

I recently ordered  a new post-partum stomach splint. I've been a fan of these for over a year now and have heard that some EDS specialist physiotherapist's have recommended these to their patients. One of my main issues within EDS is my internal organ problems. The constantly shift position, drop, swell, move and are highly uncomfortable on a daily basis. I usually walk around with a pillow surgically attached to me stomach for some comfort. I ordered a pack of three from amazon, which arrived promptly. They really are such good quality, the best quality I've had and I've tried a lot. They keep position, don't shift up throughout the day and keep their stretch as well as shape. There is a splint for the bottom part of your stomach, a larger splint for the majority of the stomach (up to just under your ribs) and finally one for around your hips. It doesn't help with the pain inside the stomach, that is obviously still very painful, however this belt makes the organs feel more compact, as a normal body should feel. I feel like this keeps my organs slightly more supported and slows the digestion process down abit more appropriately, in the sense that I don't feel the organs move as much or the food and drink sitting too heavily in my gut when wearing this. These supports can also correct your posture, which is helpful when you are prone to dislocate and sublux.

Hope you enjoyed the first of this new monthly instalment on my blog.

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

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.