Balancing rest and recovery with myositis

I must learn to accept that I cannot rush my body. It needs rest. I cannot change this. I can change my attitude to this...4 min


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2 comments, 47 points
Balancing rest and recovery with myositis

Forgive me reader, for I have slipped. I have not blogged in a month. I started this leave of absence with so many plans – I would swim every day; I would blog every week; I would get up at 7 am and take my meds and be productive, even if I was on long-term sick leave.

An optimistic start

I had such optimism. Every time I see my rheumatologist, I ask, ‘Can I go back to work yet?’. She looks at me with wide eyes, and says very clearly, ‘No!’.

Even when I was in the hospital for most of June, I would see my specialist team and say, ‘so, you’ll just give me some pills, I’ll go back to work and this will all be over soon, right?’…

Let me give you some context. I’m a management consultant by trade. There are jokes, which you can find on Instagram, that show a ‘normal’ person’s sick day (cold or flu), and then a management consultant’s sick day (on a breathing machine in hospital). This is painfully true. I contracted bacterial meningitis once, spent a night in hospital, and came in the next day apologetic that I hadn’t been able to do much work on the ‘deck’ (this is what management consultants do – build powerpoint presentations that we call decks). The fact that I can sit here and type this makes me uneasy – I should be able to work right now! But, the reality is, dermatomyositis is really kicking my a** at the moment.

I’ve been off work since June. We are in month four of this journey into Dermatomyositis. I’m not in any pain, really (some pain in my muscle biopsy scar, some pain in my hips) but this is managed with CBD oil, heat therapy, and magnesium (note: upcoming blog on navigating snake oil and supplements – stay tuned!). I spent the first couple of months trying to fill my calendar and days with activity. J, my lovely boyfriend, set me ‘homework’ of video games to play and tv shows to watch. He is a good egg and I made a good attempt. Friends came out for brunches and took me out for occasional drinks when I was well enough. I would literally sweat it out and do my best to feel normal but I would pay for it the next day with exhaustion.

But now, I am on week eight of full dose Imuran and, as many of you will know, Imuran takes about twelve weeks to kick in and I am at the point where man is it starting to kick. My last blood tests showed mild neutropenia (low white cells) so it is starting to work. The downside, unbelievable fatigue. I’m sleeping about 12 hours a day, and the rest of the day, I just lie on the sofa watching Nurse Jackie on Stan, and listening to podcasts.

So – how do we balance rest and recovery? And when does rest turn into recovery? 

I wish there was an answer. I have been resting more, and as a result, feeling better. But, when does it end? How long do I need to stay home and knit and drink tea? I want to be able to go out and do things and not be exhausted. I am terrified that I will not ever be well enough to go back to work, and I adore my job. I love it. I love the people, the work, even our clients (most of the time!). I love the intellectual and physical rigors of a difficult project. My career coach is great and is staying in touch. I am seeing her in October but I know I will likely still not have the answer we all want to know – when can I go back to work?

Myositis patients, donate plasma

I must learn to accept that I cannot rush my body. It needs rest. I cannot change this. I can change my attitude to this – I can learn to accept the current limitations of my body, and try and have faith that this will pass. I will get better. The fatigue is my body fighting. I need to give it time and space to rest.

I want to be able to do more exercise. I enjoy swimming, but even walking to the shop at the moment is too much. I walk from the lounge to the kitchen and my heart-rate spikes to 120bpm. I sit on my shower-chair in the shower and can barely hold my head up. I struggle to find the strength to get out of my seat. Even the duvet is starting to feel too heavy to lift. Am I making myself worse by not pushing through? Am I letting myself slide into decrepitude?

Spoiler alert for those who aren’t up to date on Nurse Jackie – she goes to AA meetings at the moment, and I am faced with the serenity prayer: “Grant to us the serenity of mind to accept that which cannot be changed; courage to change that which can be changed, and wisdom to know the one from the other”.  This applies to workaholics like me as much as it does to AA. I must learn to accept that I cannot rush my body. It needs rest. I cannot change this. I can change my attitude to this – I can learn to accept the current limitations of my body, and try and have faith that this will pass. I will get better. The fatigue is my body fighting. I need to give it time and space to rest.

Does this mean everything stops? 

I am slowly finding a balance, but I still believe it is important to try and get out there and do normal things:

  • I am playing board games with friends this weekend, even though it will be exhausting, they are lovely and will be patient with me.
  • My friends and I are going to a gaming expo in October (PAX) and we have booked me a wheelchair so I can manage my exertion and they will be helping push me around for three days!
  • My boyfriend and I will spend some time at the Melbourne Show next week petting sheep and eating good burgers. I’ll take my walking stick and he will carry my bags.
  • I am looking forward to a feminist literature festival in Melbourne in November – it is ten sessions over two days and it will totally kill me I think, but I want to try and do it. I have emailed them some accessibility requirements and they are happy to help out.
  • I am going to the Gold Coast for my birthday. Five days of lying next to a pool in the sun (with adequate sun protection, of course, important for DM) relaxing and reading books.

Life doesn’t stop, but I am recognising that it needs to slow down. I can’t fill every day as if I was well. I am sick, I need rest. It is ok to rest. I keep repeating this mantra to myself. I AM NOT BROKEN, JUST REPAIRING.

What do you do to balance rest and recovery? What have you got that you are looking forward to?

Also, let me know if there is anything in particular you’d like to see me blog about! 

 


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Lizzy Finn

I am a consultant on a career break, fighting a recent diagnosis of dermatomyositis. Sharing my experiences, and trying to get through the day with lots of decaf tea!

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  1. @lizzysawrus – What a great, and relatable, article about your experiences. Finding that balance is tough. Knowing when to push and when to rest. When to worry and when to relax. Having such a great boyfriend that keeps you involved in “regular” activities is awesome. Communication is so important in any relationship, but with chronic illnesses like myositis, I think it doubles in importance and something I struggle with. I look forward to more of your experiences!

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