Chronic illness is a fine balance, and sometimes that balance can feel like a no man’s land, or a void where you’re treading water all alone. Surpass that and suffer the consequences of a pain flare. Remain in that state and guilt can start to creep up on you. Am I really in a state of rest and recovery, or just being a lazy, freeloading slob? Read as I share my thoughts in the July Linkup. It is a monthly community activity I host where we share about our lives with chronic illness using five shared writing prompts. You can find the link to join us at the bottom of the post. We’d definitely love to have you with us!
2019 has been harsh. And harsh moves fast. Yet it is a welcome pace, one that I’ve been familiar with almost all my life. It isn’t right, but I feel as if the severity of the pain or gravity of the situation helps to justify my ‘lounging around’ during the grey-area days. Days where I feel mostly fine for long stretches of time, yet am not working or doing much. The fact is, working full-time will lead to major pain flares after three months or so, yet this guilt leeches onto me.
I have been either bedbound or admitted to the hospital nearly every month this year, both due to ‘regular’ illnesses and emergency situations. In January/February it was bronchitis, severe enough to trap me in bed for a month. In March it was Dengue Fever; I was just an unlucky passerby for a hungry mosquito. April was actually a great month, somehow the Dengue virus had stimulated my immune system in a good way, and I had lots of fun.
Then May came by and I became a reluctant host to a stomach bug. I unleashed the full works of my mini home pharmacy (we have all one as a spoonie!) onto it, but couldn’t eat or drink much for a week. Resource is one of my goto drinks for sustenance in scenarios like this (I hate the milk flavoured ones).
Just as I was starting to feel better, I developed severe, unexplained headaches that lasted all day. My usual painkillers didn’t help much, until I discovered that Ibuprofen worked like a charm on them. The caveat: it’s a tricky drug for me as I’m on blood thinners, and NSAIDs can cause excessive bleeding.
After suffering this for two weeks, I went to the A&E on the advice of my neurologist. It’s a common protocol for those of us with a blood clotting disorder, as you never know if unfamiliar pains might be due to blood clots or internal bleeding, which can escalate and cause massive damage. By then, my head had swelled up into a heated ball of inflammation which I tried to soothe using cooling baby fever patches (hey I have a small head!). Swollen blood vessels popped up in visible red patches on my scalp and forehead, the vice grip of the internal pain creating external ones.
Swollen forehead from probable Lupus headaches.
Blood vessels? popping out.
But the tests proved inconclusive as I had predicted, and the discharge summary classified it as ‘migraines’. I also doubted this, having read many a migraineur’s blog. So I sat down at home to analyse the pain and situation I was in. After living with chronic illnesses for some time, you become somewhat familiar as to how your body reacts to your diseases. Not all of us have access to a private doctor on standby 24/7, so often we need to do what we can on own at home.
Here’s what I took into account: location of my pain, how it presents itself, the frequency and time of occurrence, the medications that work and don’t work, the effectiveness of said medications, my recent and long-term medical history, changes to my current drugs or protocols, and data from doctors and test results.
With these findings, I strongly suspected that these headaches were of an autoimmune nature. I then wrote down a list of actions I could take to try and deal with them, and emailed it to my doctor for approval. Thankfully the increase in my steroid dose worked, which just goes further to prove that the headaches were indeed autoimmune in nature. My doctor confirmed this when I next saw him, saying it was probably Lupus headaches (my Lupus tends to get bored and shifts around in my body). This might also explain the brain fogs I’ve been having, as they are all related to the Central Nervous System.
Sooo….June. I had a double corpus luteal cyst rupture which warranted a costly visit to the emergency department. It was a precarious situation as they always have trouble finding me blood due to rare autoantibodies, and I was bleeding massively. But I am going to stop my story here for now as it’s getting too lengthy, and I think this particular episode deserves an entire post on its own. (P.s. Post is out now! Read it here: What it Feels Like to be Refused Treatment by a Hospital’s A&E)
Phew. So there we have it, and we’re already at July. Chronic illness is hard work, in a lot of sense! I plan on taking July a little easier because I haven’t a choice, really. I’ve been planning to relaunch my work site, but every week presents new problems. So I think I’ll stop penning it down in my bullet journal, and do it spontaneously.
I don’t have plans for July; I think I’ll let July plan for me. What does it have in store for me? I guess it doesn’t really matter if I’m ready for it or not, as it’s already here upon us.
Thank you for reading, and I hope to read your responses for June’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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Justifying rest time with chronic illness is always tough. I’m constantly telling myself that it’s necessary for me to keep going at a steady pace, but it’s so hard to do that when you feel “okay.” I definitely relate to your comment about letting July plan for you. Sometimes, you just can’t predict what your month has in store
I know it’s late in the month, but I hope that the following months bring better luck to you.
Hi Ella, it’s probably one of the most frustrating thing about chronic illness, isn’t it?! At least if we knew a mega pain flare were upcoming, we could try and plan around it haha. I hope you have a good upcoming August! x
I didn’t realize all you’ve been through until this post. Something about listing every thing out. I think that taking care of your health is your full time job right now. No guilt over resting allowed!
Hi Kathy! I’m sure we all have some bad years like this, so no problems. Just sucks but that’s life. Sending love, too! xxx
So sorry to read about what all you have been through. Gentle healing hugs coming your way ?.
I thought I was having it bad, but reading about your struggle helped me look at it from another perspective.
As I get older,I am also finding it harder to cope. But all a spoonie can do,is soldier on.
Hi there, it’s not as bad as it sounds, really, therefore my guilt! But then again, I keep comparing it to my ‘worst ever episodes’ which isn’t quite fair either as they are moments of life and death! No matter what it is, your pain is also valid, and I’m sending you lots of well wishes and hugs today xxx
Great Post. I’m sorry that this stuff keeps happening to you. It is an exhausting battle with our bodies trying to keep up with all the games it plays on us. I am crossing my fingers that the remaining month is a time of you feeling your best.
Thanks Laurie! No worries, all of us are fighting our own battles, too. I am hoping things turn too for the rest of the year for us all! Sending hugs!
Hello again Sheryl for another month, thanks again for some wonderful prompts. I am so sorry that this year, so far, has been a tough one for you, I am hoping that it will improve for the remaining months of 2019. Yes, I can totally relate to feeling great guilt when needing rest and a slower pace of life, I’ve recently had a giant pile of ironing that needed doing, but no strength or energy to do it, and kept feeling the guilt eating away at me every time I looked at it. But, if anyone deserves some rest and recuperation it is you. Take it easy and see you again next month!
Thanks Rhiann. It isn’t the toughest I’ve had, and therein lies another form of guilt. I think you understand what I mean! I can have low pain days, then a sudden burst of emergency episodes, or a month of high pain. When the low pain days are ‘longer’ than usual, I sink into that guilt of not finding a ‘proper job’. Thank you for your kind words. Step by step, get back on our feet. That’s all we can do x
I’m sorry you are having such a tough time Sheryl. I hope the second half of the year brings improved health.
Hi Jo, not to worry. We all have our lot, hey! Yes let’s hope the second half is kinder! x
What a year you’ve had omg I don’t know how you managed to get through all that. I think your plan for July is solid. As much as I like to think I can tick off my tasks sometimes we have to admit there’s other plans for us, which you’ve accepted so gracefully this month. Fair play to you getting to the bottom of the headaches. I can’t believe they conveniently wrote it off as migraine. I have one everyday and never seen a reaction like your forehead had. Like you said not once in any platform on migraines seen that mentioned. I hope July takes care of you this month xx
It hasn’t been a great year, but it hasn’t been my worst ever either, so therein lies the problem haha. Yea and it was a neurologist professor who wrote it off as migraines, but I think they just needed a discharge diagnosis before further investigations. Yea I’ve had migraines before when I was much younger and they were nothing like this! Quite different I would say. Thank goodness the steroids worked, though now I’m having other problems. It’s like a ship with holes and we’re just trying to throw buckets of water out constantly, hey? Haha we’ll manage just fine 😉 Sending hugs! x
Wow, isn’t that the way with the wrong diagnosis stuff. We get so good at interpreting our own symptoms because doctors so often do such a poor job. I landed in the hospital at the very end of May with what was probably a cyclic vomiting syndrome flair, but who really knows. My doctors sure have no idea. I’m glad that part of your story seems sorted out, but the cyst situation sure sounds scary! As for now, well, we all just keep on keeping on, right?
Hi Allison, thanks for reading! Yea though sometimes we need those machines and blood tests and stuff at the hospital to really know for sure! I bet if we had the equipment at home it’d be brilliant… :p The cyst stuff isn’t so scary because I’m grown numb to it, although it most certainly can be a life or death situation. And yes, all we can do is carry on, fortunately and unfortunately!
Ah, the familiar ‘am I being lazy or do I need the rest?’ self-flagellation process! I face that often and utterly agree that it’s frustrating! You’ve fought through a lot this year, and it sounds like you’re coping as well as you can 🙂 It sounds like you’ve been doing some really good self-analysis and self-care, and I’m so glad that you have at least some doctors who can work with you rather than ordering you around or standing by their own odd assumptions. Hope your July runs more smoothly!
Self-flagellation is the right word, thanks for summing it up! 😉 Thanks for the encouragement, and yes, I’m grateful for my team of doctors, I really am 🙂
I’m so sorry you are having such a rough year Sheryl, if anyone needs to rest then it has to be you and you should do it guilt free. I truly hope the second half of the year treats you much better. x
Hey Anne! It’s not so bad, really, I guess? Haha. I hope we all get the rest we need and deserve x
Hmmm seems like we are both having a rough go of it lately for different reasons. But my pain has been at Epic levels for no reason I can determine but every single day. Not even counting the migraines. It has been hellish. And I have not been able to do much at all, which then makes me feel worse.
Hey Nikki, yea having followed you on your blog, your year sounds super rough, rougher than mine in a lot of ways. Daily vertigoes would really be hellish 🙁 I hope you get some relief ASAP 🙁 x
Thank you for explaining so well what it’s like to oscillate between knowing you need rest, and then feeling guilty or lazy for doing what you need! This is a topic I have been talking about with some friends recently, and I have found their validation to be very helpful in allowing myself to rest.
I hope that July is kinder to you!
Hi Cassie! Thanks so much for reading and commenting, I appreciate it 🙂 Yes it’s a topic I think we all feel when stuck with anything chronic. It really feels like a dead zone, doesn’t it? Sending hugs!