I am on day four of bed rest following another stint in hospital (more on that shortly) and I am BORED OUT OF MY SKULL!
I have watched EVERYTHING on Netflix, and other associated streaming apps. I am in that horrible phase of recovery where you are no longer so exhausted that all you want to do is sleep, but you are still too tired to do anything productive like some sewing, or crochet, or cleaning out the cupboard under the sink. I am, however, hopeful that some energy will return to me over the weekend, and I will be well enough to get back to work on Monday. *Fingers crossed*.
So, I thought now would be a good time to update you on a few things…
Things have been going pretty well…mostly!
There have been a lot of wins recently for us. My partner and I got married in April, in an absolutely beautiful and perfect ceremony on a beach Thailand. I got a promotion at work, and the bit of extra money means that working part-time is now less of a struggle for us financially. I also got moved onto a really interesting project at work, which I am enjoying a lot.
But, as those of you on the D-train (dermatomyositis-train…can I make that a thing?) know, life with a chronic illness is rarely without its challenges.
As amazing as all of these recent wins have been, things on the health front have been tough.
My liver hates me
Some of you may remember that I had an extended stay in hospital last November thanks to drug-induced liver failure. It’s still unclear whether that was caused by one of my pain medications, or my methotrexate, but after stopping pretty much everything my liver enzymes started to return to normal.
Following a couple of rounds of Rituximab, my specialist wanted to try me on CellCept as, at the time, you couldn’t get Rituximab on a recurring basis in Australia unless you had tried all other methods (Imuran, Methotrexate, and CellCept). So, onto CellCept I went and felt immediately awful. I didn’t really think anything of it – I’d been warned that CellCept would make me feel rough, so I got on with wedding-planning and tried not to worry about it. I went for some routine blood-tests before I left for Thailand, but pretty much immediately forgot about them, focusing instead on how to fit my wedding dress into my carry-on, and on testing multiple N-95 masks to figure out the best one to protect me on the long-haul flight.
The day of the wedding, I got a call from my specialist as I was doing my makeup– you need to come in immediately, your liver enzymes have gone off again, and we need to check you out:not what you want to hear on your “special day”, and certainly not what you want to hear after painstakingly planning a trip amidst a pandemic to a remote island with only a small medical facility. I reminded her I was in Thailand, getting married!
My specialist is a total legend, and after chatting through some of the symptoms I’d been having (that I had brushed off as pre-wedding jitters or travel related stuff), she felt it was safe for me to remain on the Island, and gave me a list of things to do and not do (sadly this included not drinking the lovely Prosecco we had chilling in the fridge for the wedding toasts), and we made arrangements for me to go straight in for follow-up when we landed back in Australia.
I told my soon-to-be husband what was happening, and we agreed not to let anyone else know. We wanted them to not worry, and to enjoy our amazing day. We did have a chat with the resort manager, who was fantastic, and reassured us that if I needed to we could be at the mainland hospital within an hour.
Thankfully, stopping the CellCept was all that was needed. We were able to mostly enjoy the rest of our holiday/honeymoon (thanks to the copious quantities of Ondansetron and Targin I had brought with me which managed the pain and nausea I was having), and when we got back to Australia, tests showed my liver was on the mend. CRISIS AVERTED!
I AM INVINCIBLE! Or am I?
The wedding was amazing, and I came back feeling almost invincible. I’d avoided liver failure, AGAIN! I threw myself into work, feeling like I had to prove myself as a newly-promoted Director, and totally failed to account for the impact liver disease has on your body and, more importantly, on your body’s ability to manage energy.
A couple of months later, I crashed and I crashed HARD. I went from being able to do a 20k hike in May, to not being able to walk to the corner shop without two breaks, my walking stick, and a HR of 140. Little old ladies had more stamina than I did.
I ended up taking some time off work, and was told by my psych, my sleep-doctor, my specialist, and my GP that I had totally unreasonable expectations of my body, and that if I didn’t slow down, I would end up very unwell. Apparently it can take up to a year for your body to recover fully from liver failure, and I had been trying to do too much, too fast.
I became a permanently exhausted pigeon
So, I heeded their advice, cut my hours back at work, and have been practicing this strange thing called “resting” as much as I can. It has been painfully slow progress. But, the doctors, as always, know what they are talking about, and the rest and reduced workload is slowly helping. I am walking now without my stick (most of the time) and am managing about four hours a day of work. I’m looking forward to being able to incorporate a bit of exercise into my day, and possibly being able to take on some more hours at work in the new year.
The good news always seems to come with some bad
After three years now of managing life with this disease, it does feel a bit unfair that good news always seems to come with a layer of bad – no progress comes without sacrifice. I get to a point where a medication or lifestyle choice is supporting me in one area, but destroying me in another. It’s a juggling act, trying to balance all these different medical needs, with the life I want to live and the way I want to live it…it’s never easy. Of course, it doesn’t help that, like most people with an autoimmune disease, I have co-morbidities: PCOS, Hypersomnia, OCD, and GERD. What helps one condition doesn’t always help the others.
However, one silver lining from all of this was that, after running some tests to make sure nothing other than liver issues were going on, my specialist thinks that my Dermatomyositis is actually under control!!! I’m not on any DMARDs, I’ve come off my pain killers, and I’m weaning off my steroids. This is so exciting! I am on 2mg of steroids as of today, and within two weeks will finally be free of the insidious little pills!!!! I’m also finally out of the cancer-scare window (see my previous blog about The Big C) so no longer need annual PET-scans (we are dropping to once every two years).
Progress is never a straight line
So, if all is going well, and my Dermatomyositis is under control, how did I end up in hospital, again…?
There’s a saying about hoofbeats and horses and zebras that many in the chronic illness world like to apply to themselves, particularly if they have a rare disease like myositis: when you hear hoofbeats, think horses, not zebras. Sometimes though, it is a zebra, and sometimes, it is just another horse.
When we start to feel unwell, it is understandable that our immediate thoughts (and the thoughts of our doctors) turn to what is known already. But, funnily enough, dermatomyositis has rarely been the immediate cause of my health problems. Most of my stints in hospital have been from an infection, or because of a side-effect of a medication. Admittedly these are DM-adjacent, and I wouldn’t have developed these problems if I wasn’t immune-suppressed, but the DM isn’t actually the one setting the fires, it is just fanning the flames.
I really cannot say enough how fantastic my doctors are: instead of just writing off some recent nausea and pain to just dermatomyositis, they took it seriously, and sent me in for some blood work, a CT scan and an ultrasound. My liver enzymes were elevated again, but we caught this in time before it could cause any problems (another drug-induced issue, so we have stopped the drug and my enzymes are returning to normal). It seems I am now prone to liver-injury post liver-failure, so really need to be careful about what I take, at least for the next year or so to give my liver time to heal. This time, the culprit was [dramatic drumroll please] COLITIS!
This is my third -itis (I’ve now had duodenitis, hepatitis, and colitis – no prizes sadly for ticking off three of them) and it is definitely one of the more unpleasant ones. I ended up in hospital after about three days of not being able to eat or drink, so was hooked up to IV fluids, admitted, and put on “colon rest” for 48-hours. This involved more fluids, and bland food. Luckily, things started to improve, and I was sent home after about four days where, after more rest, and more fluids, I am starting to feel better at last.
Living life in the middle-ground
I used to obsess over every new medical setback – how did it happen, why did it happen, what would need to happen next, etc etc etc. Now, I pay much less attention – I trust my doctors, that they know what they are doing. I know now that there is rarely some magic piece of information that will solve everything – I got an infection, don’t know where from, and it made me sick; rest and fluids, and I am getting better. Pretty boring, right? It’s all become very mundane for me. Is that a good thing? Should I worry more?
I think living life in this middle-ground, accepting the good and the bad, not looking for reasons and solutions, but instead focusing on the things that keep you happy (in sickness and in health), that seems like a sensible way to live right now.
You can’t live life at 11, constantly worrying about what could go wrong – that I learned through my OCD recovery. So, I think living life in this middle-ground, accepting the good and the bad, not looking for reasons and solutions, but instead focusing on the things that keep you happy (in sickness and in health), that seems like a sensible way to live right now. Hospital is the worst, and I hated being away from my family, from my work, from my home. But I know I will end up in there again at some point. That’s ok. The doctors will do their thing, and I’ll be a patient patient, and I’ll either get better, or I won’t. That’s really what it all comes down to in the end. We carry on. Or we don’t. And that’s the same for everyone, regardless of illness. I find that comforting.
Lizzy’s top tips for surviving a hospital stay
So, in conclusion, hospital sucks. But, life goes on. The good, the bad, bring it on, I am here for it all.
If you find yourself stuck in hospital, I have some top tips to make it a bit more bearable:
1 – Bring an eye-mask, and ear-plugs:hospitals are noisy and there are machines beeping and even at night there is stuff going on. So, block out the light and the noise and do your best to get some sleep. Ask for a sleeping pill if needed and your doctor can usually chart one for you
2 – You will be too hot or too cold:you’re already sick, you’re probably feverish, and hospital gowns are not the warmest thing to wear. I highly recommend getting some thick socks to wear, and adding in a vest under your gown which you are usually allowed to wear. Or you can get some bamboo PJs for your hospital bag as they are good at keeping you at the right temperature.
3 – Podcasts are life savers:you are too sick to concentrate on a book, or a movie, but not sleeping all the time. Podcasts to the rescue. Stick on a nice long one, put your headphones on noise-cancellation, and you’ll be dozing off before you know it.
4 – Eat and drink what you feel like:don’t worry about your diet and eat and drink whatever takes your fancy. I spent one day eating only jelly, and drinking only ice-chips and that’s ok. You’ll lose weight, or you’ll gain weight, let your doctors worry about that. Eat what feels good.
5 – Data and an iPad are amazing: hospital Wi-Fi is awful, and the TVs are terrible. If you can borrow an iPad with some data on it, you are golden. Eating a bland dinner of bread and chicken broth is a bit more enjoyable with an old-favourite episode of the Simpsons on in the background.
If you are reading this in good health, I wish you more of the same. Those of you, like me, who are currently unwell, or recovering, know that this too shall pass.