Wait...so why all the weight??

So I came across this little funny picture quote and thought Oh My God this is too relevant.
This experience of having chronic illnesses has changed many aspects of my life from super simple things that are barely worth a mention to things that have effected me greatly.

The thing about chronic illness is that each person finds particular elements more challenging and difficult to deal with than others on any given day. For some people it's taking multiple medications, for some people it's the loss of friendship, for some people it's the immobility, for some people it's the labelling that comes with it, for some people it's the lack of understanding from loved ones and some it's the loss of independence. Whatever it is, there are many things that are challenging in the day to to day grind of living with chronic illness.

For me all of the things above impact me in one way or another and depending on the day and the events of each day these things shift in priority. However, one thing that remains a constant struggle for me has been dealing with a major side effect from many of my medications & immobility, which is weight gain.
I HATE weight gain and I HATE the scales!!!

In the grande scheme of my life and level of disability this probably seems silly and ridiculous to be concerned but on some days it bothers me more than anything. There are so many things that have been given up by default because of my illness and each day I focus on a different thing. I could write an essay or thesis on the different challenges that arise for me on daily basis, but instead here's a quick glimpse.

Some days in hospital when there's been a new nurse giving out medications I've had comments made to me like "oh wow you're on more medications than my grandma" or other comments stating how many tablets I take and whether they work. At times this gets me quite upset because I start to question what people think. I feel embarrassed that people like these nurses look at me and judge me based only on what medications they hand out to me, despite actually asking me to find out whether I'm taking that medication for it's typical use or an off label indication. A number of my drugs are being used off label and so unless somebody takes the time to ask me why I'm on them or gives me a chance to clarify things I am left feeling like a druggy and misunderstood. So a challenge can be people misunderstanding my medications and making me feel like something I'm not. Yes I take a ridiculous amount of medication but without them all I am up sh** creek without a paddle. Proven.

When I first got news that I was going to have an electric wheelchair as my primary way of getting around I was petrified. I knew I couldn't sit in a standard wheelchair as even the most modified and complex manual chair were not supportive enough for me. I knew this was not a death sentence, I'm an OT for goodness sake and in fact it's far more independence than I was having lying still in a hospital bed, but I felt scared. I was nervous of how I would be received by my family and friends and even strangers - I was worried on a generalised basis of what I would think and feel. When I first got into a chair to trial it I was very self conscious. I didn't want all the adjustments I needed or anything that  made me look even more 'special' but after a while I got used to it. I got used to the odd stare out and about and I got used to being semi-comfortable in myself. It's the vast degree of staring that varies greatly and the way people interact with me and cope with me in varying situations is something I'll never get used to. Some days it is at the bottom of my challenge list but other days when people stare at me and continue to turn their heads to follow my movements until the last sight of me or point and give me a pitying look I feel upset. It's a changing challenge, depending on when and where and how the events of the day unfold.

Lack of mobility and need for assistance is another area that is challenged depending on the
circumstances. Some days I don't think twice about how sad it is for me to have lost all of my
independence while other days it sits right upfront in my mind and I cannot shake the frustration and
disappointment that consumes me. I should be proud of where I'm at right now but it just takes one person to say something or one thing to trigger me into this challenging situation. Things as simple as not being able to reach my socks from my drawers or a jumper hanging in the cupboard can turn my
day a little upside down. I know in perspective it's not a big deal but when I can almost reach it by half a finger and know I can't reach forward and risk passing out and falling out of my chair it's like it is laughing in my face and teasing me. Once again my body fails my expectations and I am challenged by that.

There are SO many other examples I could go on with for an eternity but today, this week, right now I am upset and challenged foremost by my weight. I have never been a super tiny skinny person. But for most of my life I've been a petite & healthy weight and I've lived a very active lifestyle. I did have my 2-3years in college where I gained the 'fresher 5' it was called (more like 10) but even then I was not overly unhealthy (aside from the copious amounts of alcohol). In the year leading up to before I got sick I was very healthy and sometimes I think that's why this has hurt even more. I was doing really well and I was very happy. I went to the gym a number of times per week, I loved the treadmill, I went for walks/runs near my family home and I even played netball the week before I went I to hospital. How crazy is that!! I was a typical 22yr old girl with a healthy lifestyle. When I initially got sick I was so nauseated and unwell I barely ate. I was unconscious a lot of my days and too sick to eat so I lost a fair amount of weight quickly but it was the least of my troubles right then and it wasn't a concern at all for me.

Soon after this initial shock and diagnosis though I was started on high dose cortisones & steroid and a number of other drugs of which I was unaware they had huge side effects of weight gain. I got super hungry very fast and I started to gain weight rapidly. At the time I did not know a number of the drugs were massive weight gainers and retention medications and if I had known this I believe I would've asked for a similar medication without this side effect to be used in replacement. Of course
though, some of these medications I am still on today as there are no alternatives and without the medication I am a symptomatic mess with an even more uncontrolled nervous system and vitals that I cannot deal with.  I still remember one of my first appointments with my autonomic specialist saying "you're going to get fat, get over it" after speaking about a medication I had no option but to use. I was a little relieved that at least this time I knew what to expect, but really it didn't make the process any easier.

Since starting on a number of weight gaining medications and then gaining above my healthy weight,  I've dreamt of stopping them, yet this is not possible and I still remain on a number of them. There is no way of coming off them anytime soon so I've had to learn to deal with the added weight but it has not and is still not easy. Since my initial introduction to these medications I have lost a large portion of the weight I had gained rapidly but still have a very long way to get back to what I was originally or even to a weight I feel comfortable in myself at. I have been lucky in that I haven't had to really diet to loose this weight, more just lost it along the journey as I have been able to move more and complete small activities whilst also getting into a better understanding of the needs of my body. The other times I have lost larger amounts of weight is during the periods of time where I have been completely unable to physically eat. I have had to have feeding tubes because I couldn't swallow safely and because I was more unconscious than conscious to be able to eat. At times the nausea consumed me entirely & some days this still happens as nausea is such a huge and primary symptom of mine that I continue to deal with everyday. Those periods were really tough and something I would never wish upon my deepest enemy. During those times I was not deathly skinny but I was struggling in many other ways. This has been hard. This still is SO hard. Weight & food are hard. No matter how little I eat these days I still cannot stand up, I still cannot walk around or run, I still cannot do exercises in sitting, I still cannot sit for any length of time and I am overall still a very immobile person. I cannot burn the energy of my intake on even my best day so for now it is near impossible to reach a deficit and loose weight. It is tough.

Some days I cope well with the new body I have and some days I just want to hide myself as it doesn't feel like me. I don't eat excessively and I have a generally fine diet so I feel I don't deserve the weight. It would be different if I sat here everyday and night with a big donut or maccas - then I'd graciously accept my current status. But this is not me and this is not why I have gained my weight. Honestly I feel a bit cheated. To be fair to myself I'm not a ginormous human and I'm not scary stage large but I am a very small and petite person and above all else, I am not comfortable with my weight and that's all that counts to me. It is my body and it is my right to have it as a priority on my challenge list,

 When I saw this picture quote I laughed so hard as I thought to myself YES YES YES this is me!!!!
I do think the only thing I can literally fit into are my earrings as every inch of my body is crawling with water retention weight and real weight. When I get down or sad about what this illness & it's resulting immobility and medication therapies have done to my body I need to stop and think about how my life would be without these medications. The answer is horrific. I would be lying flat in a hospital bed unable to even lift my head like I was for a long time in the beginning. During the difficult times it is hard to think logically about this, but the fact is my quality of life would be so poor without using my chair and taking all my medications. It could arguably be pointless and worthless, and much more depressing so for now, as much as I hate my new body, thanks to my chronic illness, I will just keep on striving everyday to get better. I will keep aiming to improve my function and in time hope to reduce or delete some medications. I will wake up and try to be grateful for what I have because despite all of this,  I do have a good life. I have family, I have friends, I have hope, I have dreams and I have a future outlook that is better than many. All of that is worth all the challenges and is worth continuing my fight to kick chronic illness and Dysautonomia is the butt! Big time!!!!!

If you don't laugh you'll cry right??? I think I'll laugh at this quote and dream about some high school outfit I might get back into one day.

How kindergarten helped me find my voice

Hospital life is far different from the real world. It's an insular bubble that people morph into and out of generally at a fast pace of days or few weeks. Most people come into hospital and can count on their fingers how many days they've stayed and can recall all events that occurred in their stay.
For me on the other hand it's all a big blur. If I think about the last few years stuck between the hospital walls I have many memories of highs and lows but still do not recount nowhere close to everything.
Along my journey I've been through periods of intense writing, weeks and months where I've kept track of almost every aspect of my day and then I've got gaps and voids where it all morphs into one.
I've got memories of so much, yet I feel sad that I've not done an honest job at staying on top of my recordings.
This last 4 years of life has redefined me as a person, but more specifically; a sister, a daughter, a friend, a woman, & a girl with a chronic illness. I am not the same girl who went in to hospital in 2010. I mean elements are still me, I guess I just see the world differently, react differently and my ability to have a voice has changed.

For the first few years my muma & dad were my voice. They spoke up for me when all I could do was lay in the bed completely still and without a pillow to prevent going unconscious. I had a rough experience initially when I was transferred to the private system with barely a diagnosis but assured that I "will be better after a few good weeks of rehab", clearly that wasn't the case. My Dr Poo overdosed me on a medication which left me unconscious for 2days and many more horrific things which I think are worth a post on their own eventually.

Over the years of battling the daily grind of hospital living I've managed to find my voice. Not totally, but definitely more than before I got sick. I've spent probably 90% of my time on the same ward, known here as Ward Hope. It's here that I developed my voice. I think when you're in a persons life long enough you get familiar, and that's what has happened to me. In some parts it has been great and allowed me to know the nurses and staff on a personal level and build some real lifelong relationships, but in other ways it has been difficult.
In a ward there are layers that dictate how things get done & who does them. I've always had a good relationship with my consulting Dr and I am so thankful for that. I've had good relationships with nurses although I have had 2 big challenges. I think the fact they were/are so mean and difficult has made me speak up.

In a situation like a long term hospital stay it feels like kindergarten when you've been placed in a play group with "that kid"...and "that kid" is nasty, bullies and hates you yet you cannot escape him. The play group situation in here is hard, especially where you are being forced to interact with people who you know to dislike you and speak about you behind your back. It can eat away at you. It most definitely ate away at me for a long while, especially when the person being horrible thought I didn't know what they were saying. Having to be kind, tolerant and suck it up has been a huge challenge at times but I've also found that I Can and have a Right to challenge things that are negative towards me. I don't need to feel even more isolated than a person already does whilst lying in a hospital bed and upset from a single persons views. No one in a vulnerable situation or any situation for that matter should feel belittled and bullied and we all have a right to survive harmoniously.

Before getting sick I was not a push over. I did have a voice but I was scared of how people would react. I rarely disagreed with what people presented to me as treating options or how my daily cares were run. I wanted to seem fine and my way of coping was to nod, smile and say 'ok, sounds good'. Over time I started to recover and with this I started to stand up...ahhh no, make that slightly sit the bed up 😊 and speak for what I wanted. I think about most patients in hospital or healthcare situations and wonder how many feel confident enough to fight for what they need?
 I am so lucky for many reasons but in this instance I think being a health professional myself (OT) and studying medicine has opened my eyes to see that the professional is not always right, and neither is the patient. They say knowledge is power and I agree. In the hospital and health situations the more you know about yourself, your condition and what you want & expect the higher the chances are you will be able to be heard. It's a difficult balance between professional Vs patient but once it's found in believe it can change everything for the better.

Nowadays I am confident and happy to be an active participant of my managing my care. I can now say I disagree with treatment options or request to trial something not mentioned. I will discuss my issues with nursing staff directly and not sit and stew over what has been said.
This has not happened overnight but has helped and I hope will continue to help me feel in control of
my life.
Everyone deserves to have a voice and be free to choose their health management. So ask yourself this:
Do you feel in control of your health?
Do you feel capable to speak up for what you want?
Do you believe knowledge is power?

Are you a bleeder???

Seeing as this week is my IVIG infusion week I thought I'd do a little post to explain what IVIG is, how it has been helping me & what you can do to help.

Since becoming aware of my extremely rare Autoimmune Dysautonomia diagnosis (AAG) I am undergoing regular blood transfusions of plasma and antibodies to fix my messed up body. This treatment started at the beginning of this year and has made huge advances in my recovery process, which has been exciting and positive.
I remain on a huge amount of tablets daily to control all the different systems that have been affected by the whole Dysautonomia both POTS & AAG. With both the medications and the blood I am in a seemingly good place at the moment which is pretty uncommon in my world. It has been a real blessing to have access to this most appropriate treatment that could get me further to better management than ever before.
The effectiveness of IVIG for me is very clear. If I look at my previous hospital admission or the times when I have had the exact same infection which had put me into a flare, based on previous experience I should and would be still in hospital. This latest admission of early 2014 had a predicted discharge date of no earlier than end of October 2014 at best. This prediction was made based on how sick I had been and how quickly I usually return to my basic level of function. But something different happened, this time I got home at the beginning of August and my team & I attribute that to the extra treatment of IVIG. My team of doctors have noticed the rapid increase in improvement and have decided I will continue to receive IVIG and high volume IV Fluids monthly until I am walking independently and unaided (no no walkers or wheelchairs etc) or if I am to stop responding well to the treatment other options will be explored. YAY!!!

The thing with IVIG is that it is super dooper EXPENSIVE. Due to it's shortage of supply via donors it makes plasma and antibodies both hard to attain and extremely hard to meet the qualifying criteria. Due to my condition being super rare (literally 1 in 1 million people) it is not on the qualifying list and seemingly impossible to be approved for by the Blood Authority of Australia. This was a huge hurdle in my mind when the treatment option was first discussed. Luckily for me I have a wonderful team of doctors who believe in me and have seen my struggles first hand so are willing to go above
and beyond & present their evidence and knowledge for me. It was with the help of a head of department at my treating hospital coming on board and willing to support my primary team to get IVIG that made this wish a reality. He took my case to the hospital board and they decided in favour of supporting my IVIG.
I literally cried. A lot. And then I felt grateful.
So blessed to have a medical team who fight for me & are patient advocates, I know this is sadly not the case for everyone.

In a quick description, basically IVIG stands for intravenous immunoglobulin and is a combination of plasma and antibodies from healthy blood donors administered via a vein. It is reported that it takes over 1000 blood donors to make one portion of IVIG, hence it's challenges in both obtaining enough and ensuring the blood product is only being used for specific purposes.

So here's a fact sheet about IVIG http://resources.transfusion.com.au/utils/getdownloaditem/collection/p16691coll1/id/236/filename/251.pdf/mapsto/pdf

I don't normally do 'preaching' posts but if I could educate one more person on my illness and the treatment I need to help get my life back on track I will.
Normally, all I ask of my kind readers is to enjoy my writings and join me on my journey to better health but today I am asking something more.
Blood donations have become a vital part of my life & will continue to be indefinitely, so I ask all of the healthy people out there to please take the time to donate blood. Every donation gets someone one step closer to recovery and in my instance, one less stressful minute worrying about whether some day resources will not be enough to cater for me.

Every single donation DOES save lives and for me, it's a chance to win mine back. 

EXHAUSTED is the new energised...right?

This last week has been busy yet again. I've had appointments with familiar and not so familiar specialists, I've been to non-medical appointments, I've had 2 sessions of OT & Physio, I've met with some people at home & I've had my lovely cousin from QLD visit which is always amazing to see him. It's also been Father's Day  to celebrate my amazing dad. I love him to the moon and back!
It's been a busy week, and here it is about to go again. Except instead of starting the week hopeful and ready to go, I'm tired. I'm so bloody tired.

Everyone is tired.
People go out and party - they get tired.
People go to work full time - they get tired.
People who work shift work -they get tired.
People who are athletes - they get tired.
People who are studying or at school - they are tired.
People who run a family - they are tired.

And me. I am always tired.
If you look at my daily life habits it probably seems beyond incomprehensible how somebody who has no strict or gruelling timetable can be tired or even comparably as tired as the other person, but that is so wrong in my case.
If I have a quick glimpse at the biggest daily happening for me they would include; waking up & showering, dressing and getting up for the day, going by transport to an appointment of some sort, returning home and organising lunch, doing a short time of exercises, leisure time and then finishing the day with dinner & nightly routine in getting ready for bed. At all of these daily activities & routines I have either a family member or nurse with me to help when needed. So this tiredness sounds both pathetic and unjustified right?!
I agree on paper it sounds pretty ridiculous. Saturday for example, I awoke at 8.30 and got ready for the day with my nurses then we had a really nice enjoyable family brunch and....I was out like a light asleep from about 12.30-3pm. I could've slept a lot longer but had something to do so forced myself to wake up (Ok, maybe my mum forced me to wake up. Big deal!). This was an especially fatigue filled day with no real reason. Well, No 'normal' reason that is.

My reason for being exhausted and fatigued everyday of my life is something unseen by the wider community and is simply a symptom of my health conditions. Fatigue and exhaustion are an invisible aspect of my invisible chronic illness and many other illnesses too. In my instance I'm referring to my fatigue being a direct result of my arch nemesis, Dysautonomia.
I can understand people looking at my life and being unable to understand just why I'm so tired and that's why I thought I'd try and explain one the most debilitating aspects of my conditions.

You know when you're having a conversation with someone about the busy week you've just had and you say to them that you're just so tired. The most common response to that in human nature is to reply in a similar fashion saying I know I'm tired too. And yes, both people can be tired, that's the honest truth. But when you compare the tiredness of someone who is seemingly healthy and fit to someone with POTS, their tiredness are on completely different levels.

If I was asked to describe my feelings of tiredness, I don't think could. The terms that seem to best fit with my feelings of tiredness are exhausted, drained and wiped out. Before getting sick I was a tired person too, thanks to college, late night chats, a few to many hangovers and the Uni life. But if I'd had felt this tiredness I'm in now, I don't think my normal tiredness would've been worth mentioning. Going from what I call 'normal' tired to POTS tired has been quite a significant change. I used to feel tired and then wanting sleep- having sleep and feeling a bit better but now the tired I feel is unrelenting and unforgiving. I have a sleep and wake up tired so then I have a rest...and fall asleep again. I'll then do something like physio or OT and be exhausted afterwards aswell. The worst is when I have friends over to visit and no matter how happy or how much I'm enjoying myself I sometimes crash and burn like it's the end of the world. The reason behind this though is not just me being a bit of a cop-out or lazy, it's actually part of the physiological changes that occur as part of the POTS & Dysautonomia trifecta.

At first I didn't know why I felt so differently tired than before and so reading more after I had my diagnosis it started to make sense. I got reading some medical journal articles and one of the bigger doctors in the autonomic community, Dr Grubb, put it very accurately in saying : 

"Patients may be severely limited as activities such as housework, bathing, and even meals may exacerbate symptoms. Recent studies have shown that many patients with POTS may suffer the same degree of functional impairment as patients with chronic obstructive pulmonary disease or congestive heart failure..." 
(from:  http://www.medscape.com/viewarticle/522421 ) 


 When I first read this I must say I actually couldn't even sit up or even turn my head at this point. These are still major issues for me now but I'm hopeful that I will improve as time goes on. Doing activities such as housework and personal care did not make me 'this' kind of fatigued prior to illness, infact there was barely a thought process in doing those tasks as they were just another part of living. But lying in my hospital bed it was made clear as the thought of doing any large movements was exhausting in itself. I was just existing. I was upset, scared and felt overwhelmed by this new diagnosis but in another way I was relieved. Sounds stupid right!? 
Yes, but no. As I was feeling so tired and sleeping away a good 18hrs+ of each day I was relieved when I found out that this type of fatigue I'm experiencing was linked to my illness. I worried 
because I am not a lazy person and I would give everything to be back to my old self but I feared people who lacked the understanding of my condition or knowing my fighting spirit prior to this would judge me. And you know what...I'm certain a few ignorant people have, so good riddance to them. Meanwhile my truest friends have stuck around and I can't thank them all enough.

The article talks about comparing the functional impairments of someone with POTS/Dysautonomia to COPD or heart failure. Crazy and scary! I've never been exposed to chronic obstructive pulmonary disease but I have done some research on it as part of an OT assignment at Uni. It sounds horrifically debilitating and unkind. To think that this level of exhaustion and fatigue are experienced daily by those affected with COPD and heart failure is saddening. Yes I'm tired and exhausted 24/7 but I do have better days and some worse, so I am thankful for that. Over the years I have most definitely experienced severe functional impairment but all I can compare me experiences too is how I've felt at my previous levels of function. 

So I meant to post this earlier but I was too depleted to get my thoughts organised and post this up. Today I awoke just as tired as yesterday, although I must attribute some of that to my sleepless night because I had a bug in my room on my wall and I legitimately cannot cope with creepy crawlers. Eeek! Today is a hospital free day for me & my only one for this week so I'm enjoying just being at home around my sisters & Missy dog. The downfall of being so tired all the time is when you slip into that delirious and no sense state . It's embarrassing, especially like today when we had a visitor over I started off on this tangent about hotel waiters and ester day told my sister that the car keys were in the toaster. Oh my!! 
The last few days have been extremely exhausting for no particular reason other than my completely dysfunctional body. I'm certain this too will pass and I'll be back to my usual sleepy state and have a much better ability to function & be coherent.
Today I might do some more research on ways to reduce fatigue and exhaustion as I could most definitely use some extra tips. Do you know any tips to help??

For now, sweet dreams & don't let the bed bugs bite!!!

xoxo