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.