Waiting

It is 7.30am and I have just taken my morning cocktail of medication. The Azapin (azathioprine, the drug that suppresses my immune system) is up to its full dose now and my steroids are down to a relatively low dose of 50mg. I’m coming up to the end of my second month off work, and week 4 of my official career break.

My first month off was filled with activity – tests, hospital, waiting, worrying. There was a lot to keep me busy. This second month has been different. Quieter. I keep waiting for something to go wrong but so far so good. I haven’t picked up an infection. We’ve got on top of most of the side effects of the drugs. I haven’t lost my hair. I’ve managed to keep my weight stable. When will the next thing go wrong?

The more things “go right” the more I feel guilty for not working. Could I work right now? No – definitely not. I have had a few good weeks post IVIG but I feel the energy leaving my muscles in the past couple of days. My legs feel weaker. I feel more tired in general. I find it hard to hold a conversation for too long – I lose track of what is being said and I find it physically difficult to produce sound after talking for more than 10 mins. I’m getting about 12 hours of sleep a day, and I still feel tired, despite the steroids. All of this means I really can’t work right now.

I’ve learned some lessons while I’ve been recovering though.

• Retail therapy is far too tempting. Buying things is a little thrill and I’ve been justifying much of it with ‘oh, well I’d run out of x’ or ‘but y is really good’. Nope – just say No, Lizzy. You don’t need and can’t afford all that crap!
• Food is also far too tempting. I live on a great street near some great cafes, as does J, so there is a tonne of stuff to literally sink my teeth into. I don’t need it. I have plenty of food at home. Again, just say no!

Some positive lessons:

• It’s ok to sit on the sofa and do nothing. You are recovering. This is what you are meant to be doing.
• A shower every day is amazing, especially when the steroids are making me so sweaty!
• Get out of the house every day, even if you just walk to the end of the road and back. Fresh air, people, daylight – all important.
• You don’t need to be doing anything right now. It’s ok. You don’t need to fill your time with plans and activities. Embrace the quiet.

I feel more tired in general. I find it hard to hold a conversation for too long – I lose track of what is being said and I find it physically difficult to produce sound after talking for more than 10 mins.

So, these are the lessons I will try and bring with me into the coming month. I have my dermatomyositis specialist appointment and some blood tests next week, so we will get a clearer plan of what that coming month looks like. We will see what impact the IVIG has had on my CK levels and what happens next. Until then, more waiting. Taking the good days as they come and trying to not feel pressured to fill them with useful and productive activity. Wish me luck!

What keeps you going when you are on sick leave or bed rest? What mistakes have you made? What lessons have you learned? I’d love to hear from you in the comments 🙂

You can also find me on Twitter: https://twitter.com/lizzysawrusrex

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