Life Lesson-2: Awareness

10 life lessons from my autoimmune disorder (ITP) that helped me brave the Covid-19 pandemic

Series on Mental Health & Mindfulness

Hi,

Greetings for the day!

While in the previous post I told you that the foundation for overcoming a crisis is acceptance, the one important factor that acts as a catalyst in speeding up the process of acceptance is AWARENESS.

Awareness is key. In the absence of information, none of us knows what is happening and what could be jeopardizing our health, our water supply, and our planet.

-Erin Brockovich

Knowledge or information helps in processing a situation better. Educating yourself and the people around you with every bit of factual (not the WhatsApp university gyaan) information can make you feel empowered to face a crisis. Now I tell that from a personal experience. And today’s post is very much relevant to the current pandemic because the hero and villain of this story is none other than steroids—the one medication that has made the headlines for being a life saviour for many covid patients in the critical stage. But what you may not know or what your doctor may not warn you of is what makes the rest of the story a must-read. I told you, knowledge is power.

As with most autoimmune disorders, the main and first line of treatment has mostly a medication with corticosteroids to bring down inflammation. So in my case too, with ITP (if this is your first read from this series, then start here), I was administered steroids, dexamethasone during my pregnancy, post-pregnancy, for a procedure year later and also at all the times when my platelet would drop to around 50000. Trust me on this when I say none of the doctors told me about the side effects of the steroids. Because for them they were specialists from the field, they see a sea of patients even with worse counts and conditions and it didn’t even bother or make any sense for the need to explain about the medication. 

Now you may think what’s the big deal about it. We all just take the prescribed medication and simply follow it and at times even forget a dose or so and just go with the next dose and it’s normal. Well, I have done that too but the non-steroidal medication had never caused me a problem. It’s the steroids that I’m talking about.

As I said, with my condition, platelet counts plummet for no known reason and I end up having gum bleeds, internal bruises or extreme fatigue (the kind of tiredness someone experiences while having a dengue fever). So when this happens, the first course of treatment usually is a medication of steroids. Since I was unaware of the side effects of steroids, I just took the prescribed doses. 

On the first day of medication, I found my fatigue lessened. The second day, I saw gum bleeds stop and over the days I saw the bruises disappear. While all these were the best part of it, the worst nightmares came as aftermath. What initially seemed like lessened fatigue transitioned to hyperactivity and insomnia. My appetite would peak like hell that I would just go about finishing baskets of fruits over the night while staying awake. During the days, it would be cooking and eating on a repeat mode. Within a week, I developed the typical moon face from steroid abuse and gained a considerable amount of weight. 

What more, I would most of the time be in a state of euphoria and hallucinating quite a lot, to an extent that in one such phase I was discussing starting (not even joining) a political party with my friends (thank God that my friends were sane!). For those of you who know me, it might be a surprise if I told you it was also a period that I would talk unstoppably. I was in that kind of a high, without even an inkling of what was causing it all. 

It took me like 4-5 days into medication (of steroids) to realize I was behaving strange, something that is not typical of myself when my husband pointed out to my sleepless nights and skyrocketing appetite. I don’t know what made me do so, but I thought I got my symptoms cured and so let me stop the steroids and that caused havoc. Please never abruptly stop when you are on steroids. Steroid medication needs to be tapered and not stopped at once. Back then I didn’t know that and I simply stopped. The very same day I hit my extreme low in my behavioural pattern. I was groggy, extremely tired and feel restless. For no reason, I would feel depressed. And all this change within a day. Such is the side effects of stopping steroids abruptly.

Now, this is the reason why I felt awareness is a must to tackle any problem. Had I been educated or informed about the side effects of steroids well before, I would have made conscious choices in my diet, not blame myself for all my behavioural changes. But the lack of awareness took a toll on my health physically and mentally. I kept blaming myself for forgetting things and dates. I blamed myself for developing a phobia towards Mathematics while just a few days back I was just loving my job of handling Engineering Math. Brain fog was also a side effect. Had I been even a little aware, I would have been a little gentler with myself. I would have taken better and informed decisions. That said, now you know how important is it to educate yourself and the people around you with the right kind of information. 

So here are few tips on how to practice awareness aid during a crisis:

• First and foremost, awareness should come from self. That can happen only if you start listening to your body. How? Sit in silence, take time alone doing or thinking absolutely nothing.

• If you have the privilege of access to the right kind of information, do share it with the people around you. While you do so, do it in a way of educating and not to create panic.

• Do not believe in every piece of information from social media just because someone who cares for you shared with you. Question its authenticity. Verify with the source of information.

• If it’s about a medical crisis, remember, it’s ok to ask your doctor about the diagnosis, treatment and medication. But do it politely and genuinely but not from an I-know-it-all-mindset from your google gyaan. 

• Educate yourself from trustworthy resources, like physical books, designated department heads or concerned authorities. Do not believe in the information that is aired repeatedly or politicized with a motive to make it sensational. Beware.

While the above are few generic tips, here are some very specific tips related to steroids medication. If as a treatment for Covid-19 or any other ailment, you are given steroids, please have these in mind:

• Ask about the dosage and duration of the course of steroid medication. Note it down and follow it religiously. 

• Never skip steroid dosages or abruptly stop in between. Your physician will always tell you to taper down (gradually decrease) the dosage and follow as instructed.

• To deal with increased appetite have healthy snacking options like fresh fruits (avoid fruits high on sugar) or salads.

• Steroids can increase your blood sugar levels. So have a check on your sugar intake.

• Take extra care of your oral hygiene. Avoid junk.

• Have lots of fluid (natural & non-sugary) intake.

• Let your caretakers or people around you know about your medication. Ask for help if you notice behavioural changes. It’s common, and it’s ok. You don’t have to deal with it alone.

• A very long-term intake of corticosteroids may cause bone thinning. Talk to your physician if you notice gum bleeds, tooth loosening, joint pains, frequent falls, etc. and ask for calcium and vitamin supplements. If you are a pure vegetarian, the chances are high for a need for supplements.

• Feel free to talk to your physician about any change or feeling that you may find weird. No question is silly. 

• Most importantly, be aware that it’s the medications making you feel or behave a certain way and not you. Be kind to yourself. 

I hope today’s post would have been of help to you. The information here regarding corticosteroids and their side effects comes from a first-person experience of being on dexamethasone on and off for over a decade as a treatment for ITP. This is in a pure intention to help you be aware of its side effects so you can minimize them. There’s no need to panic or deny steroid medication as they are potentially life-saving too. It’s just about taking an informed decision and minimizing side effects. 

See you with another life lesson tomorrow.

Take care, stay safe.

‘This post is a part of Blogchatter Half Marathon.’.and also part of Blogchatter’s CauseAChatter.