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April was a bit of a whirlwind month for me. There was the post-dengue fever recovery, my birthday, and work to catch up on. There was also the loss of some pets – our first, only and dearest dog, Snuffles, who died from a cardiac arrest. We will miss her, but I’m also glad that she’s no longer in pain from her cancer, horrible itching, and arthritic joints.
We also had to give away one of our parrotlets because he was starting to become of age, and began to pursue the female in the other parrotlet couple. Whilst she enjoyed the attention, I’m pretty sure we’d end up with one dead male parrotlet, if we were to keep them both. Cute little things they are though, with their angry, high pitched ‘eep eep’ squabbles.
So here I am, regathering my tools and stepping into May, almost half a year gone by. I’m retracing and catching up on tasks – yet again. Re-assessing my energy levels – as always. And hunting down (‘eep eep’ style) my targets and plans – all over again. Drop………/\…/\…….roll (sloth style), and limp.
So, something interesting seems to have happened to my body with the dengue. They took me off my main immunosuppressive drug, cyclosporin, while I was in hospital. It’s been over a month now, and we haven’t re-introduced it back into my system yet, because guess what? I don’t seem to be in as much pain as usual. I’d imagine coming off one of my biggest drugs would cause intense pain by now, but it hasn’t.
I discussed this with my doctor, and he did say that there was a very very slight possibility that the dengue virus had messed with my immune system, and somehow reset it in the process. Something to do with T-Cells and neutrophils. The likelihood of this happening is so rare, he can count the number of cases on his fingers, and he’s been in the medical profession for decades.
To put it briefly, neutrophils are akin to the scouts of our immune system, and T-Cells are the berserkers or cavalry. Without neutrophils, T-Cells do not know where exactly to strike. Communication is key. The dengue virus had probably interrupted their communication (which was faulty to begin with anyway).
Anyway, the acid test for this is whether I can cut down my steroid medications or not. That’s the other main drug I rely on to keep my immune system well-behaved, and also my biggest physical pain remover (not reliever) when the big flares hit. That’s my mission in May. Fingers and toes tangled up.
Autoimmune disorders are complex with many factors involved, both external and internal, so it can be extremely difficult to tell what’s doing or affecting what. Even as I type this sentence, the variations in my daily life serve to complicate my investigations, even though I’ve kept it as constant as I possibly can.
I first started using the Quell for pain relief upon discharge from the hospital. This makes me unsure if that might also be helping with the pain, and exactly how much. It was a novelty to actually have the occasional pain-free day, which was a strange but welcome ‘feeling’! (I put ‘feeling’ in quotation marks because – whilst pain is a sensation, is ‘pain-free’ one, too? I think so…feeling ‘nothing’ feels awesome!)
I’ve tried adding a few other supplements and protocols to help give my body a healing boost as well, such as an ultra binder detoxification supplement, a new probiotic with different strains, and lymphatic drainage massages with essential oils.
Stimulation of the immune system is something that many healthy people classify as a good thing to do. For those of us with autoimmune disorders however, this could mean pain and destruction, as our immune systems are already hyped up on a regular day. Unfortunately, I think the new probiotic was too full on for my body, so I’ve been limping around with cramps and joint aches the entire week. Other factors that have messed with my ongoing investigations in between, some of which I cannot control:
- Sudden downpours and thunderstorms after weeks of *intense* sun.
- I spent nine hours out in one day, attending two events that only happen once a year/rarely.
- My INR (blood clotting time) went haywire for unknown reasons.
The clues have fallen apart and are lying around in a mess, and I will need to piece them back together again, perhaps from a different approach. Slow and steady is really the name of the game. These investigations will probably be a lifelong one, to be honest. I also understand that in order to conclude if something works or not, sometimes I may need to backtrack and so, there *will* be pain involved. The irony.
In any case, I would like to write more about this in a separate post, as one small section here doesn’t do it justice. As you can clearly tell, even my summarised thoughts here are all quite messy and haphazard.
On a different note, ‘original’ Sheryl is a rather impulsive and impatient character. With the improvement in my pain levels, I admit that I’ve been a little careless with my energy and behaviours. I guess I’m allowed to seize the day and celebrate a little, but I also need more discipline 😉
Eustress after all, is still stress. And stress as we all know by now, can channel back into our system as a pain trigger. I don’t want to restart the vicious cycle all over again (if it hasn’t already), especially over things that aren’t worth it. I’d like to guard my energy better. Or rather, to nurture it lovingly.
I’ve been using the extra energy I’ve had of late to do a bit more cooking and cleaning. (Though I’ve had to bribe myself with dessert or Game of Thrones reruns.) I’ve also been meeting people, laughing and smiling more. Social interactions are vital for our mental wellbeing, yet is the first thing that goes when you’re in pain.
I do have difficulties when it comes to setting boundaries in certain scenarios, or dealing with certain toxic personalities, however. Thus, I will need to sit down to explore these personal issues. I tend to either panic or compromise too much each time it happens. So I figured that I could plan some of my decisions in advance. A frame of reference so to speak, of where I draw the line, when to say no, etc, to protect my own energy and wellbeing.
Reviving an Old Project, ‘Sick Lessons’
Finally, I’m not sure if you remember this project of mine, sicklessons.com. I abandoned it for awhile because I wasn’t able to devote equal attention to both blogs at the same time, and chose to focus on A Chronic Voice.
But I’m thinking I don’t have to keep that project perfect. It’s allowed to be shoddier than A Chronic Voice, a bit more raw that is. There are still so many stories and life lessons waiting to be heard. Whilst this blog aims to do that too, they run on slightly different tangents.
‘A Chronic Voice’ focuses on articulating lifelong illnesses through various voices and perspectives. I do this through publishing personal and guest posts on my blog, and through lots of sharing via my social media channels. It’s a lot of work!
‘Sick Lessons’ focuses more on the lessons that people have learned, specifically from being ill. Things that they have been forced to come to terms with, or gems of wisdom dug out from the dirt. Lessons that can be applied to our own lives, and reflections to ponder over. If you’d like to help revive this project and contribute a short lesson, you can do so here.
Thank you for reading, and I hope to read your responses for May’s prompts too! Click here to submit your own entry, and to read about what others are up to as well!
*Note: This article is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
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For More Insight:
- What Are the Different Types of T Cells? (celiackidsconnection.org): http://bit.ly/2IX3eTJ