Lowering the rose colored glasses on Long Covid recovery

And how leaning into pink and finding the softness in life is helping my recovery

This post turned out quite long so if you are curious to skip ahead, I outline below what I did to prepare for and the specific things I brought for a short and successful road trip (!), updates on my recovery plan and protocol and some additional resources I’ve found helpful lately. Okay, lets’s dive in.

One year into my journey with Long COVID and although I’ve gone through many lows, almost unbearable at times, I’ve been able to remain fairly optimistic in that I will recover from this and I will get my life back. I’m not sure if this was me having a rose colored outlook on the situation and being so naïve to the lasting impacts this illness can have on someone’s life, or if it has truly just been a survival tactic for me keeping my head in the game (read: recovery/life). Either way, that hasn’t changed entirely, but as of late I have been making some perspective shifts in hopes that maybe a new perspective is what I need for this next phase of recovery. Rather, I’ve lowered the rose colored glasses on my Long COVID recovery and am taking a new approach to this next phase of my journey.

Chronic illness in general has been such a foreign concept to me in that I am learning that working harder at recovery may not necessarily increase my chances or speed of recovery. Maybe this is me succumbing to this fate and loosening the reigns a bit. What I would not label this as is defeat or giving up, rather a shift. One thing LC has taught me is the importance of asking for help. This is not something I’ve been historically great at or even feel fully comfortable with but have had to embrace this last year and have seen how helpful it has been in my recovery. I’ve been forced into a softer life-and it’s working. I’ve truly been embracing the softer side of life lately and this is something I truly hope to continue well past this chronic illness. I’ve been approaching situations slower, bringing less expectations to the table and have generally just been approaching life with a much less harsh lens.

How I’m embracing the pink; literally and metaphorically.

If you know me, my closet has a very clear color palette; black, grey, dark greens, deep mauves, you get the idea. I am not a pink and flowery girl yet a few weeks ago I saw a pink pair of shoes and honestly contemplated buying them. Immediately after recognizing this interest, I stopped and thought “but this isn’t me or my style”. Why was that? Why did I have this visceral reaction to liking something pink? I wasn’t always this way but I think the last time I wore anything pink was in high school. When did I make this shift? I have no way of knowing if my change in clothing aesthetics has anything to do with my harsher outlook on life or the heavy expectations I’ve put on myself the last few years, but there is definitely a correlation with the uncomfortable-ness I have with the feminine, and therefore the association with pink. So back to the pink shoes, I like to think of this as a testament to the hard work I’ve been putting in on embracing the softness and slowness of life and how intriguing that these changes are noticeably popping up in my wardrobe choices. I will note that pink may not correlate to soft for everyone but has been so in my experience.

Okay, getting back to how this relates to my recovery…

A few things I will dive into in this post are updates of where I’m at in terms of recovery; what I’m doing, tools I’m using, etc. One of these tools is starting therapy again. For the first 3 months of Long Covid, I was wrapping my brain around what was even happening to my body and finding the vocabulary and resources to put an answer to some of the physical changes I was experiencing. Then the next 9 months were purely just survival. I had learned that what I was going through was Long COVID and there weren’t any answers so any available spoons I had went to researching, learning, absorbing, etc. I am just now getting to a point where I have points in my recovery journey that are more peaks rather than valleys and I’ve been using this time to deepen my recovery skills. I’ve been taking what I’ve been learning and absorbing and putting it into action. I’ve been taking supplements, experimenting with pharmaceuticals, practicing mind and body healing techniques and most recently, I’ve started talk sessions with a therapist again as I’ve learned that there is a major connection to stored trauma and chronic illness.

After going over my current situation, one of the first questions my therapist asked is if I had a disability placard for my car. She is an action oriented gal getting right down to business and I love that about her but I was quite shocked and immediately responded with “no” and “doing that would mean I’ve committed to identifying as disabled and I’m not there yet”. We then walked through acknowledging a disability doesn’t mean I have to make that my entire personality but it does open me up to resources, rather than limiting me to the disability itself and actually helps me have to rely less on identifying with said disability. Which initially seemed counter intuitive but makes sense in the context of a few examples.

First, having a disability placard means I regain access to some independence. For the most part, I have been unable to drive for the better part of the last year. Partially because the physical act of driving takes so much energy out of me, but also because if I were to be alone and could not find parking near the entrance of where I needed to go, it would be nearly impossible for me to park in the back of a parking lot, walk into a store or doctors appointment, then complete the appointment, then walk back to my car THEN drive back home. I hadn’t realized how this simple inconvenience was limiting me so much. I will continue some of these realized benefits in my next section that covers some travel accommodations I’ve found that have enabled me to take my first trip with LC.

It is true, I was able to accomplish a short roadtrip this last weekend to celebrate my wedding anniversary. Here’s what I did to prepare.

My goal was to do a mini getaway with my husband for our anniversary if I had been feeling good leading up to the trip. I wanted this for me to bring some bits of enjoyment back into my life (something I’m working on with my therapist) but also for my husband who has lost a year of his life too taking care of me. Here are some things I did to prepare to make this a worry free, stress free trip:

• KN95 masks (duh). I found a brand I enjoy and are comfortable and I always bring enough so I never have to worry about having one for myself, or others. This just gives me peace of mind to enjoy public spaces without the worry of reinfection.

• Booked a fully refundable hotel stay so if I needed to cancel last minute, I could do so with no financial repercussions. I also have the Chase Sapphire Preferred credit card that covers cancelled trips for medical reasons which I have had to use in the past and was able to fully refund the entire costs of my trip with a doctors note. Here’s a link to get 60,000 bonus points for signing up!

  

• Booked a hotel that had ocean views and a balcony so I didn’t even have to leave my room all weekend if need be (spoiler, I didn’t for the most part and it was great). This meant I was still able to enjoy hearing and seeing the ocean without having to use any spoons. I also realize this is an immense privilege that I do not take for granted. But ways I found that have helped is storing my Chase CC points for free travel! More importantly, when I got to the hotel, I asked for help and shocker, they were incredibly accommodating! Once I got over the fear and burden of being labeled as a person with a disability, I saw how easy it was to advocate for myself. After stating that I had limited mobility, the hotel offered to find a way to get me down to the beach and get set up with a chair so I didn’t have to walk at all. Shocker…asking for help can actually result in…HELP! (P.S. I’d stay here again sick or not. Views were stunning.)

  

  • This is where I realized how the benefit of a disability placard could have been the difference in going to the beach and not. If I didn’t have these hotel accommodations, that disability placard would have given me parking access to the beach right to where I could have just pulled up to the sand and unloaded my chair. Something I now realize I have the right to have access to.

• I also got this fully reclining zero gravity chair that let’s me get my feet up. This allowed me to stay down in the sand for a full hour!

  

• This ultra wide UPF 50+ sun hat does wonders with keeping the hot sun off your skin. This is a game changer with keeping me cool.

• For the car ride to California from Arizona I created a back seat set up that kept me out of the sun and cool, removed my sensitivity to light and sound and kept me propped up in all the right angles so that my body fatigued much slower.

  • I got a medical exemption to tint my windows to a higher tint degree. I was able to get this form through my DOT website and submit the appropriate form with my doctor’s consent. This has been immensely helpful with being able to tolerate longer car rides.

  • This pregnancy pillow has been a general life saver for my countless hours in bed and did wonders to keep me propped up and my legs elevated in various ways in the back seat.

    

  • This eye mask that I use every night for sleep came in handy to keep the sun out of my eyes when it felt too much.

  • My BOSE noise cancelling headphones that I truly could not live without. Often times I will just pop them in with no sound playing to just dampen the background noise for some quiet.

  • Water bottle + Buoy unflavored hydration drops. Sign up with this link for 35% off their products for life with their chronic illness discount.

• I also packed all the essentials I would use in the event of a flare up in addition to the items above which included:

  • all of my supplements

  • an ice pack

  • pain reliever

  • inhaler

  • essential oils to calm my nervous system

  • safe snacks

Overall, I realized that travel can be safe and even enjoyable and being prepared was the best way in removing any barriers that were in my way of ensuring a trip was possible. For me, I realized that fear of a flare up was my biggest barrier but if I prepared to have all of my essentials in the event a flare up did occur, I removed that burden of worry and could just enjoy the moment. I’m not going to lie, watching people down at the beach jogging the coastline sucked. I was envious, even jealous of that life I used to share with them a year prior. Before this trip when my rose colored glasses perspective on what recovery looked like or should be was fully enforced, I believed that I had to be 100% better to make trips like this happen again because I was so sure 100% recovery was just around the corner. Now that I’ve removed that outlook and instead implemented a more realistic approach, I realized that I can still find moments of joy well before I get to that 100% recovery mark. I deserve it and I believe finding these small moments of joy are actually retraining my brain to learn that movement, enjoyment, and sensory trips like this are okay again.

One last observation from this trip

In relation to my identity as being disabled, I want to leave you with this observation from the balcony at the people down below. I saw this young, happy couple with a dog strolling down the sidewalk along the ocean just like everyone else. Except the woman was in a lite version of an electric wheelchair. It looked just like a slim, normal wheelchair but it was obviously electric as she was powering it herself. She was laughing, smiling and all dressed up. My immediate reaction was “that is so cool, I need to see what these are about”. And that I did. I found them online and this resource felt really attainable if need be. I feel very proud that this interaction was a positive one because even just a few weeks ago, I fear my reaction would have been pity or sadness for that woman yet now, just a few days ago, I was able to look at her with envy and happiness in that she had a tool that so clearly was enabling her to enjoy a great afternoon.

So whether or not I fully commit to getting my disability placard or electric wheelchair, I know I have the resources to inquire more about those options if I feel like they are right for me in the future. I thought taking off my rose colored glasses meant leaving any sense of hope of recovery behind, but it has actually done quite the opposite. It has shown me a new way forward without having to wait to hit a milestone for a perfect moment in recovery to continue a life forward that has moments of hope and joy.

I want to leave you with a few other housekeeping updates on other LC happenings in my life.

• I had some high protein counts in my urine despite my kidneys seeming to be functioning quite well (optimally even), so at the direction of my Nephrologist, I am taking a break for 3 months from the supplements that I’ve been curating with my naturopathic doctor to see if long term NSAID and supplement usage is just a little too much for my body right now.

• I recently got a rebounding trampoline to try and incorporate varying small movements into my routine but have learned that rebounding is too much for my system at this moment. I do continue my bi-weekly lymphatic drainage massages which seem to continually help.

• As mentioned, I restarted therapy in the hopes of dealing with some of this medical grief. I will note again, I purely did not have the energy to even consider talk therapy again until just a few weeks ago. That alone with not being able to have the energy to talk through some of these things has been quite hard so I’m very relieved I finally have the energy to incorporate this back into my routine.

• I am now 6 weeks into using Low Dose Naltrexone. I’ve read that in can help with a range of symptoms from everything like brain fog and PEM to MCAS and more. The goal is to get to 4.5mg daily but I started at a very low dose of .5mg daily and increase the dosage .1mg each week. I have read that vivid dreams and feeling very wired at night are some side effects so I take my dosage in the morning after breakfast to mitigate this. So far, the only side effect I have noticed is that I do get pretty nauseous the first few days after upping my dose, especially if I take it on an empty stomach before breakfast but it seems to have virtually no risks and the nausea is manageable so I plan to continue to take it. I have read from other users that it can take up to 6 months to take effect so I will continue to give my updates on this. More info on LDN and LC here.

• I also started using these nicotine patches in my regiment as there is some research out there that nicotine may help in recovery from LC, particularly around brain fog and fatigue. I buy these 7mg patches and use half a patch at a time for a 3.5mg dose. I only wear mine during the day and remove before bed. Also, this article talks about some of the scientific mechanisms of why nicotine may help through methods such as:

  • Activation of nAChRs: These receptors are involved in almost all synaptic nerve signals. Nicotine may help restore their function, which could be disrupted by the SARS-CoV-2 virus.

  • Cholinergic Anti-Inflammatory Pathway: Nicotine binds to α7-nAChRs on macrophages and nerve cells, activating a pathway known to reduce inflammation.

  • Increased ACE2 Expression: Nicotine may upregulate the production of ACE2 receptors, which play a role in modulating inflammation and blood pressure.

  • Vagus Nerve Activity: Nicotine has been shown to increase vagus nerve activity, which is critical for autonomic nervous system balance.

  • Reduction of Chronic Inflammation: By activating nAChRs, nicotine may decrease systemic inflammation often observed in Long COVID.

• Additional resources on nicotine usage for treating LC:

  • This protocol for dosage and duration

  • Further information here

Lastly, here are some more great general resources I’ve been finding really helpful for me at the moment

• I’ve been working on stimulating my vagus nerve for all the benefits it has on regulating your nervous system. I am currently reading this book ‘The Great Nerve: The New Science of the Vagus Nerve and How to Harness Its Healing Reflexes’

  

• I’ve been following Faith Ashenden on Instagram and reading her blog. She posts a plethora of free tips and resources on how to regulate your nervous system and what she did to recover herself from chronic illness.

• Based on some of the daily mantras Faith Ashenden posted, I created some of these mantras into phone screensavers to use as daily reminders to take a moment to breath. Enjoy them yourself here, here and here.

• Alex Howard’s ‘Decode your fatigue’ series

• Last, this just made me laugh. Some chronic illness humor.

Here’s to a healthier & happier tomorrow,

Lauren, The Wellness Aesthetic

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