Tag: chronic illness

All Beginnings Begin With An Ending

Bones

I find myself on the floor, in the fetal position, alarmingly often these days. Much has happened in the last several years, and honestly, I haven’t felt able to really communicate it, either here or to friends, let alone to family. It’s as if I am paralysed by something, the words stopping before they can fully form and trickle down my fingers to the keyboard.

But now I am at an ending. I am packing up my home, the one I have lived in for the last 5 years, and moving to the other end of the country. I am packing up my treasures.

I am packing up the lie of a joined life I have lived for over half a decade. I am realising, in packing, how separate, how alone, I have been, living with the human I thought the world of.

I am packing up the ashes of the pets I have lost. Their mementos. A halter here, a collar there. That chair that my old cat vomited on so many times I just gave up and put a sheepskin down.

And now I am at a beginning. I am moving into my own home, one I will share with no other human, for the first time in my life. I am moving into a rural environment, where I see naught but paddocks out my windows, for the first time in my life. I am moving to a new city because I want to move there, for the first time in my life.

All beginnings begin with an ending. I am mourning the ending so that I may fully embrace the beginning.

Belated Farewell to 2022

Bones

Well the years start coming and they don’t stop coming, as Smashmouth said so many years ago, and it is painfully true. The hits also keep coming, but we roll with them, because the alternative is to break, and ain’t nobody got time for that.

This year has been its usual mix of ups and downs – I got through this year of university with my service dog at my side, my wrist has healed, and I can do things. I still have to do a lot of things off-handed, but I can still do them, and that’s what counts! I’ve realised some things about myself and my amazing human being that have settled much anxiety on my part, and are pushing me towards a new and exciting

Well the years start coming and they don’t stop coming, as Smashmouth said so many years ago, and it is painfully true. The hits also keep coming, but we roll with them, because the alternative is to break, and ain’t nobody got time for that.

This year has been its usual mix of ups and downs – I got through this year of university with my service dog at my side, my wrist has healed, and I can do things. I still have to do a lot of things off-handed, but I can still do them, and that’s what counts! I’ve realised some things about myself and my amazing human being that have settled much anxiety on my part, and are pushing me towards a new and exciting future.

Amazingly, and I’m going to do a full write up of this, I have found some medications that have considerably helped with improving my energy levels, physical resilience, and recovery times. With that, careful exercise, and a collapsible mobility scooter (seriously if you don’t have one you should absolutely get one), I have had more energy to put into things I love doing.

This next year is going to be a slog, one more year of intense university to go, but then I am free to decide on the future I want.

Farewell to 2021

Bones

I won’t look back on 2021 with fondness, and I won’t sugarcoat it by highlighting the few silver linings. I will mention them, but I will not say “they make the bad things worth it” because, to be honest, they don’t.

2021 sucked. It was hard, it was painful, it was stressful and expensive. I was diagnosed with postural hypotension, and discovered that I would convulse if the almost-fainting episode was severe enough (I suspect this is convulsive syncope, but there’s no real way to diagnose it, unless I have an observed episode). I was dismissed by doctors for both that and my munted wrist.

My narcissistic ex-husband finally sorted out paying me (and my mother) for his debt / things he borrowed, and while that was great, the nightmares I experienced during this were something else. At least now I can file for divorce.

I gained and spent a small fortune. I’m still kicking myself for spending that much. I have so many regrets about that it physically pains me to think about it. I still don’t know how.

Because of my ruptured triangular fibrocartilage complex, I was unable to attend university last year. I was also unable to work. Unable to knit, crochet, write. I became very depressed, which resulted in me becoming one with the couch for the majority of the year. I gained another 8kg.

I had surgery for my ruptured triangular fibrocartilage complex at the start of November. They found a lot more damage than they expected. They repaired a ligament connecting the medial and proximal carpal bones in my right wrist, admired the joint capsule I had busted up, and took a redundant ligament from my inner wrist to become my new ECU sheath. Since late December I have been permitted to begin moving my wrist, though it remains sore and stiff. The scar tissue adheres to the underlying tissue so quickly, I must keep massaging the extensive scarring to break down those bonds.

There were bright spots in 2021. I got away to the beach for a bit with the dogs. I have increased my energy levels considerably. I’ve worked hard to gain more fitness and strength. I have made it to the end of 2021 with the same number of animals as I went in.

I will work hard to make sure 2022 is a better year than the last one.

Taking Responsibility For Your Chronic Illness

Bones

This is a delicate topic because we often equate responsibility with fault. Indeed, I still do, and I am consciously working at changing that.

So I will explain what I mean right at the beginning. What has happened to you is not your fault. Your chronic illness and how it has progressed is not your fault. The things you now can and cannot do because of your chronic illness are not your fault.

How you manage your chronic illness is your choice. How you manage your chronic illness is your responsibility. You’ve been dealt a crap hand. What you do with that hand is up to you, and that is what I mean by responsibility.

We have a choice of how to manage our chronic illness, and every minute of every day is a reflection of our choices. Some days I choose to manage my chronic illness by being proactive and booking myself treatments (acupuncture, personal training, chiropractor, etc.). Other days I choose to manage my chronic illness by going back to sleep. My choices change depending on what my chronic illness is doing – this is a necessity. While I could choose to go on a run on days where I’m in a lot of pain and fatigue, that would be an irresponsible choice, because the next day would be worse. However, if I choose to have a nap on days where I’m in a lot of pain and fatigue, or do something that requires limited energy expenditure, that is a responsible choice, because it gives my body the rest it needs and sets me up for a (hopefully) better tomorrow.

This is what I mean by ‘take responsibility for your chronic illness’. Don’t passively allow things to happen, make choices. Even if that choice is to stay in bed, consciously make it. Taking ownership of your actions and reactions is incredibly powerful, even if you don’t do anything differently to what you always have. It gives you a sense of strength, a feeling which I regularly find myself lacking in. It can also give you a sense of achievement. You choose to do a thing, you then do the thing, you have achieved what you set out to do. That’s an amazing thing. Yes, even if that thing is having a shower!

Last year I really grabbed the bull by the horns and took responsibility for not only my chronic illness, but also a substantial injury to my wrist. I decided I would do everything I can to improve my body so that when I did go through surgery, and the subsequent immobilisation of that arm, I would have a lot of good fitness and wellbeing to fall back on. Since then I have attended personal training twice a week (most weeks), acupuncture, and a chiropractor. The first several months I slept around those appointments, as each treatment took everything out of me. I went through months of napping in the morning, in the afternoon, and then sleeping through the night. Now, after almost a year later, I am able to walk around without my cane. I went for my second Couch to 5K ‘run’ (it was a slow jog). There are days where I don’t need a nap. This is all down to making an active choice to change the status quo, to respond to my injury and chronic illness by working to improve my fitness and overall wellness.

Sometimes the good choices are hard choices. Sometimes the good choices are easy choices. Sometimes you don’t have the energy to make the good hard choice so you make the easy choice. This is okay. This is being responsible for your chronic illness and for your life.

(I just point out here that I am incredibly aware of my privilege with this. I am privileged to have enough money to be able to afford these treatments. I am privileged to have enough time and energy to be able to attend these treatments. I am overall privileged to be in a position where I have these treatments available to me. Not everyone does, and not everyone can. Be kind to yourself above all and do what you are able, and do not beat yourself up for what you are not able to do.)

Remember To Take Your Meds

Bones

I have a really good pill taking routine. I’ve been taking the same pills for years now: one lot in the morning, one lot in the evening. I take them at specific times, and I even have specific alarms on my phone to remind me. My amazing human even reminds me to take my meds each evening. It’s a good routine. It works.

Except when it doesn’t!

I took in a foster kitten, so my evening routine changed slightly to accommodate kitten cuddle time. This put everything out of whack and, as a result, I forgot to take my evening Pregabalin.

Don’t do it, folks, it’s not worth it. Remember to take your meds.

I woke up hot and feverish, sweat dripping down my back and joints burning. My feet felt so swollen they could burst and every step was agony. I hobbled into the kitchen, took my meds, poured myself a cup of kava, then curled up on the couch and went back to sleep.

I’ll talk more about kava in a later post, but suffice to say it’s been a godsend, especially for days where I stupidly forget my meds.

I slept all morning and by early afternoon everything had kicked in and more or less righted itself. I still couldn’t quite manage normal life, but I wasn’t in quite as much pain.

So yeah. Remember to take your meds!