As I have mentioned on here before, the idea of self-isolation for the preservation of health is not new to me (or nearly anyone with chronic illness). Since becoming ill nearly 20 years ago, there are some themes that have continued that others are just beginning to experience right now.
Some of these themes include uncertainty of financial security, lack of job security, limited options for exercise and leaving the house, more time spent bored at home but unable to do much, and paranoia over every little symptom that arrives or changes.
Putting all of that together, then adding the awful combination of lack of sleep, extreme dietary restrictions, and feeling brutally ill all day every day, there should be no wonder why people with chronic illness often suffer from depressive episodes.
Just because I have become accustomed to the self-isolation that the general public is now asked to adhere to does not mean that I find it easy. It is not easy. It is agonizingly difficult. The really unfortunate part right now is that I have to ramp up my isolation because I cannot trust the general public to follow these rules.
Many issues are weighing heavily on my mind these days. Obviously I am concerned for the health of my family, my friends, and myself. I am concerned for our vulnerable population, who are likely going to be expected to quarantine for a much longer period of time than expected (which is understandable, inevitable and infuriating - like adding insult to injury).
The other issues that concern me, however, are more subtle to those who are not consistently ill.
Medication insecurity is one. I do not know if there will be shortages of medications that keep me alive. This is no hyperbole, I could wind up in a critical state without my medications. I am also having to be excessively careful with my own health.
On any given day, I could suffer a life-threatening throat swell, a severe flare-up of several illnesses, recurring infections, and episodes that normally send me to the ER. There are certain activities of daily living that often lead to these terrifying episodes that I am now avoiding as much as possible - like eating solid food, certain physical activities, or giving in to several emotional extremes. I have to keep myself calm, I have to keep my diet very minimal, I cannot push my body too far with any activity (I mean activities like doing a load of laundry or cooking dinner), and I have to be particularly careful about becoming dehydrated. Simple things, like these, are often what lead me to require emergency care. I am desperately trying to avoid needing that care.
The hard truth is that no one is doing all that well right now. Everyone who has been isolating is struggling. Adding in an illness (or multiple) that never goes away adds an additional layer.
We are being asked to stay away from friends, family, and the general public.
We are being asked to change our routines and behaviours for an invisible disease.
We are all facing a novel situation - no one knows how this will all unfold, but every single person is being criticized for their response.
We are all being asked to forgo all of our regular daily activities even if people have zero symptoms.
We are all concerned with finances, job security, food security, and walking a fine line between over-reacting and underestimating the power of this pandemic.
We are all being asked to trust in our government and healthcare officials - people who have not always given us much reason to offer our trust.
We are all being given mixed messages incessantly on social media, which is then compounded by the fact that we are all much more exposed to social media.
We are all bored, we are restless, we are desperate to go outside and be social, but for the safety of our neighbours and for the greater good, we are asked to bury those instincts and come up with new and creative ways to access the outdoors.
So here are my current struggles - many of which are ongoing and began long before this virus ever reared its ugly head, and have now become amplified:
• My sleep schedule is glaringly sporadic and insufficient. Insomnia is wreaking havoc on my body and mind.
• My IBD seems to reverted back to an old 'normal', one that allows for very little solid food. When I DO eat, from sheer desperation and exasperation, I suffer the consequences, which are often unbearable.
• I am weak. Not just my immune system, but my entire body is already fighting a life-long battle with a staggeringly long list of symptoms. My body is exhausted. With this exhaustion logically comes a blow to motivation and the ability to participate in anything productive or active.
• I am on immunosuppressants and have had the thought of dialing back those doses to give me a fighting chance against Covid should I face it. I know I am not the only person concerned about this.
• I have appointments with specialists and plans for medication changes, but I have no idea what my care looks like going forward. Medical necessities, like appointments, regular bloodwork, updated scans, action plans, and crucial regular maintenance have all been postponed indefinitely. I know and understand that my normal/daily chronic illness needs are not a priority - and they shouldn't be. I have survived much worse than what I am currently dealing with. It does weigh on my mind, though, to just sit at home and take care of myself, crossing my fingers that when I do finally get to see my specialists that there will not be any irreversible damage done to my system, and hoping I can avoid catching this novel virus.
So I am sick of not being able to eat properly. I am sick of not being able to sleep normally. I am sick of spending half of every day in the bathroom, suffering the painful consequences of trying to eat. I want to get outside, be active, be productive, learn something new, bake, cook, play music, sing, run errands, catch up with friends and family, take the dogs for long walks, and a laundry list of other things - but my body is simply not allowing that. All the while watching the unfolding medical situation that is plaguing our entire existence.
None of this is easy.
However, I am willing to continue in this current state for several months. I am expecting to live in this manner for months and then a little bit of an improved existence once this virus is less rampant: for the protection of my own health, for the protecting of those around me, for the greater good. There are moments in life when certain desires, or perceived necessities, are not worth the risk that they pose.
Please stay home.
Everyone is suffering. Everyone is having a difficult time. We do not want to extend this suffering any longer than what is necessary, but the more we defy guidelines that are temporarily for protection, the longer this will drag out.
Stay safe.
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