CLICK HERE to submit your own entry, and to read about what others are up to as well!
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
Sheryl, thank you for hosting these link ups! I’ve been enjoying reading them and have been wanting to participate for awhile. I was excited that all these prompts lined up so well with what I’ve been experiencing and musing over this month.
Most welcome, Cassie! I too really look forward to seeing how others use the prompts every month, always fun to read! Thanks for joining us this month! x
Thanks for the prompts this month! It’s really interesting to hear how the sickness maybe re-set your immune system. I certainly hope that your lower pain will continue. That’s what everyone would love 🙂
Hi Lisa! Yes fascinating, isn’t it? We’re mutant after all, quite literally 🙂 I think it did help to reset it for a while but now I’m developing other problems so…welcome to a new ride 🙂
Condolences on saying goodbye to your special friend. I recently lost my little lhasa apso dog. It’s comforting to know they are not suffering but they are definitely missed!
It’s wonderful that you’ve maybe had a good side effect from the dengue fever. I hope it continues giving you a much needed break!
My system reacts horribly to probiotics. I suppose they work well for some and not well for others! Wish you the best in your continual investigations and treatment.
Thank you for providing the writing prompts and link up party!
Hi Selina, thanks for dropping by! Yea, it’s always sad when a pet you’re close to passes on 🙁
I think the good side effects are fading haha. Perhaps it just gave a temporary boost. May has struck me down with more normal people sick stuff again. Oh well.
Sounds interesting. My nutritional therapist mentioned that people with SIBO (small intestinal bacterial overgrowth) get reactions from probiotics. Maybe something worth looking into!
Thank you for the fantastic prompts this month, it’s been enjoyable finding ways to incorporate them in a post. And such positive prompts too so am hoping that it reflects a more positive frame of mind. I am sosrry to hear about the passing of your dog, I know from experience that it’s a painful and horrible time. I do hope you find a loving home for your parrotlet.
And best wishes for your reviving of Sick Lessons, it’s a great and hopeful blog for anyone living with chronic illness and, or chronic pain.
All the best
Hi Rhiann, thank you! I hadn’t noticed they leaned towards the more positive side, ha. Perhaps it’s a matter of perspective, too 😉
I too always enjoy reading your entries every month as they are rather different from mine, which makes it all the more interesting. Sending hugs!
I didn’t notice any loss of quality in this month’s post. I learned in April, that I really needed to pace myself. I wanted to help with a fund raiser, but didn’t think that I could due to huge amounts of fatigue, brain fog, and pain. However, I spoke with the organization president about my misgivings. (It’s a very small, local group.) Together we worked out tasks that I could do sitting down. Two weeks before the event, we started on these tasks so we didn’t have them all to do the week before. I packed my lunch and took the time to stop working and eat it. To my surprise I was able to do way more than I thought I could, over that two week period. Following the fundraiser, I was completely beat for the next week. It showed me that I could do more than I thought if I paced myself. I’m so glad that you’re feeling better than last month.
Thanks for the encouragement! 🙂 And I’m also happy that you managed to do more than you thought you could for a good cause! Pacing is definitely important but I’m known to suck at it 😉 Try I must! Sending love! xx
I’ve been away from blogging due to uni for the last month. This is one of the first posts I’ve read in a while and it was a lovely read! Once I finished uni I immediatly checked out what pompts you had chosen for this month as it is a perfect way for me to get back into writing, so I am really grateful that you do them!
It was really interesting to hear how you have been getting on. I relate a lot to boundry setting as I am sure a lot of chonically ill people do. Sometimes it is difficult to know which events are going to be “worth” the consequences. I might steal your idea of planning ahead so that I have a frame of reference.
Hope you are as well as possible! 🙂 xxx
Good to hear from you! How are things? I hope uni life has been kind enough to you!
I am honoured that you came to check out the prompts as one of the first things! To be honest I felt that this was one of my more disorganised and messy posts, heh. My thoughts are all over the place, but I suppose it doesn’t matter. Next month will come, and we can re-piece our lives over and over again (in a good way!) 🙂
Sending much love!
Things are good thanks! Looking forward to getting back into blogging over the summer.
I didn’t think it was messy at all, I thought it was great! But yes we can re-piece our lives again (which we have gotten quite good at due to chronic illness!) 🙂
Sending love back!
thanks so much for sharing! Love the image of getting moving ‘sloth style’! So very, painfully, true! My condolences on the loss of your dog, and I hope that the parrotlet is able to find a good home(you just can’t fight nature sometimes). The autoimmune process you’re talking about is fascinating! It’s amazing how complicated our bodies are, and the miraculous way they work(and the frustratingly small things that can go wrong, leading to huge consequences for us!)
I’m with you on the boundary setting concerns as well – my post this month is about my adventure in boundary maintenance.
Your ‘sick lessons’ idea is great, and I’m glad you’re working on reviving it! *hugs* best wishes to you – hope you can keep smiling and have more to smile about!
Hi Alison, thanks for reading! Haha yes, drop roll and run spoonie style 😉 Snuffles was a lovely dog (aren’t they all?!), and I’ll have some great memories with her always 🙂 Yes I miss the little parrotlet but it’s better this way.
And yes our immune systems are crazy (quite literally for us!). Don’t you wish they were more normal and boring sometimes :p
Yes I’ll take it slow and revive it calmly, for once, heh. Sending hugs to you too! xxx
Lovely blog. Glad to hear you’re smiling more 🙂
Thank you! 🙂