The Lighter Side of: Progressive Diseases

I would say that most of the time, I am working hard to maintain what I am currently feeling. Not because how I currently feel is all rainbows and sunshine every day, but because I know that things can get worse... a lot worse. They *have* been a lot worse. They will worsen. That is not to be pessimistic, it is to understand illness.
Chronic illness is likened to a rollercoaster ride for a reason. For many people this is a very volatile experience - good days, bad days, without much consistency and with each day being almost entirely unexpected. Although it does not define who we are, it can unfortunately 'run the show' at times, especially during severe flares.
One of the many reasons I try to stay active, even though some activities cause severe pain, is because I want my body to be as strong and as tough as possible. That way, when things do become worse, whether temporarily or not, I will have that core strength there to help me recover.
It can appear to be a paradox - to be healthy in muscle and strength but so weak in internal organs. To have some semblance of physicality while simultaneously struggling to walk.

I want to maintain what strength and flexibility I DO still possess, while hoping and working towards improvement, all the while knowing and understanding that I have progressive illnesses.... Illnesses that have a general downward trajectory, even though it might not be linear.

The Lighter Side of progressive illnesses is that I have a generally clear idea of where I may wind up with my illnesses.
I can *sort of* see what is coming up ahead -> in the overall scheme of things anyways. 
It isn't pretty, but I try not to dwell on the future of these diseases too much, because it can be a difficult and highly distressing image to come to terms with.

There are some hard truths when it comes to disease:
• I have no large colon and I have an internal J-Pouch. There are high statistics showing failure in these if surgically created early in life, so it is highly likely that I will eventually require a permanent ostomy.
• I have Macular Degeneration - and an early onset that many ophthalmologists have never seen. There is no predicting how quickly this disease will progress or in which ways. The reality is that I will likely go blind... probably over the next 10-20 years. Let's hope it is the latter or even further down the road.
• Due to so many allergies, intolerances, and lack of available medications, my Ankylosing Spondylitis will progress. I am already using a wheelchair at times, and this will become much much worse unless a cure is found.
• I have Hereditary Angioedema, and although it is not necessarily progressive, it does have a direct link to stress (stress of any kind can trigger an episode but stress itself does not cause the illness).

There are a lot of 'what if's and 'what may happen's here, but the general understanding is that many of the illnesses I suffer from will continue to become worse over time: Psoriasis, Migraines, Raynaud's, additional development of autoimmune and inflammatory conditions, Tachycardia, Hashimoto's Thyroiditis, hell even the AVM in my lung could eventually cause an issue.

So my future may be blindness, barely mobile, with a permanent ostomy and maybe even the removal of my thyroid. Plus trying to medicate my other illnesses with blood infusions and any other medication, natural or pharmaceutical.
That may be my future.

Knowing this, however, is a curse and a blessing. It is a blessing because I also have had time to prepare as much as possible. Prepare mentally, but also prepare physically. Let me tell you, these illnesses may be progressive, but they sure as hell won't progress without a fight. I am gonna go down swingin' every step of the way. I will modify what I do and how I experience the world so that I remain happy and healthy in my mind and in the parts of my body that can still be strengthened.
That is all I can do.
It is all I can hope for.
And maybe if I keep fighting, maybe all of this inflammation and autoimmunity will just give up the fight and leave me be.
Plus - what is the point of feeling that negativity day in and day out? We already feel pain and illness every day, why dwell on an uncertain future when it might get worse - or better? Why wake up each day simply to torture myself with the statistics and the progression?

Knowing that my body will worsen much earlier in life and at a much faster pace than the average person has been both a struggle and a positive factor in my life.
So why not attempt to focus, at least the majority of the time, on the positive aspects, and build upon that view?

Do you know what none of those statistics really ever tell you?
Stats don't usually show whether or not a person was happy. Stats do not show an individual's life other than what their medical records show. Stats do not tell you if those people experienced love, excitement, adventure, all of those other experiences that go far beyond physical pain. I focus on maintaining what I can, strengthening where I can, and looking towards the aspects of my future that are positive - while preparing, as I best know how & for what I have been told, for what could be negative.