Lupus DVD

Hi all,
Super short post today. I just glanced at the shelf and saw something you may be interested in.

The Lupus UK site have great resources, amongst them a DVD created to help patients understand Lupus.

Real patients and their families discuss Lupus and it’s a really relatable DVD.

Visit the Lupus UK website and search the shop for other great resources.
(Ps I don’t work for Lupus UK, I just wanted to recommend, especially if you are newly diagnosed.)

And before I forget, there’s a film called Love Simple that you might like. The main female character has Lupus. As it’s rarely represented in the media, (unless you watch House) You might find it interesting.

Til next time,




Hi all,
I wanted to write about pacing because it’s only January 20th but it already feels like April!
Basically, I’m exhausted – but I know I’m not the only one. (Accidental Sam Smith lyric, sorry!)

Pacing is something I’ve mentioned in the earlier posts but I think it’s a good time to recap. Lots of us have set goals and resolutions and so may already be doing too much. This post isn’t just for people with Lupus, but anyone with chronic pain and chronic fatigue.

We all use pacing as a way of reaching goals. A good example is someone with little running experience deciding that they want to run a marathon. If they’re smart, they’d want to pace their training instead of going from the couch to attempting the 26 mile race.

Pacing is a skill that can take a very long time to master. It’s the process of planning ahead so that we’re able to fulfil our obligations/carry out daily activities in a sustainable way. It should also help to lessen the exhaustion and pain that comes with trying to live at the same pace as a person free from illness.
If we pace ourselves, we’re more likely to achieve our goals, therefore feeling better about ourselves. And lastly, pacing should prevent the crash and burn that we’ve all experienced by taking on too much.

Below is a short but helpful list of things I learned during a Lupus education course in Bath.

The 3 P’s:

Prioritise: Is it really necessary to do everything on my list today? Is there anyone to help me?

Plan: What do I need to be able to achieve this task/goal? Can I break the task into stages? What exactly does the task involve?

Pace: How can I pace this? How I can I determine a baseline for the task? (The baseline is the level that you are able to sustain certain activities without exertion. This means you can perform them more regularly on both good and bad days. And always stop before you feel completely exhausted.)

We need to find a balance between rest and activity. You may find it useful to keep a diary recording your daily routine and rate the pain and fatigue from 1-10. You can also download My Pain Diary from the App Store and record info on this. Look out for a review on very soon.

In the past, advised by my physiotherapist, I kept an activity chart for a week or so. I highlighted the high energy tasks in red, low energy in yellow, resting in green and sleep in blue. A visual representation is a great way to look at the areas in your life that use the most energy. Are there changes that need to be made? Are you getting enough rest?
It’s also a great piece of info to show a loved one or even your employer.

With pacing, you have to find the correct balance for your lifestyle.
You also need to be kind to yourself. There will be times that you pace and plan and your body decides that it’s the perfect time to catch an infection or sickness bug and this will cause a setback. Using myself as an example, if I get flu, I’m normally still feeling the impact a month later. As my body is trying to fight the infection, I’m left with much more pain and fatigue. At times like this, the laundry can wait, the best intentions to exercise can wait, everything else on my to-do list can wait. However, the important thing is that I have a setback plan to help me get back on track.

I’m currently awaiting an appointment for Rituximab treatment with the hope to eventually come off steroids. It’s been over 10 years on prednisone and it’s taken a toll on my body. I’ve gained a massive amount of weight and this has to go! I’ve heard that it can take years for the body to return to ‘normal’ and for the weight to start coming off and this is very daunting. I’d love to be able to get fitter and to be more active in everyday life but it will be a process of pacing, planning and goal setting. My body is so de-conditioned and my tolerance for activity is pretty damn low. With time, I know that my activity baseline will increase and I’ll have a much better quality of life. I’ll only achieve this if I continue to pace and plan.

Have you found any of these principles helpful? leave a comment on the Sick of Lupus Facebook page and we can discuss!

Til next time