Live.

Work and rest.

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Life on planet EGPA.

New agendas.

You will find that much of your time gets filled with EGPA driven events, hospital tests, consultants, medication and so on. Also the simple tasks in life like getting up and having breakfast will take much longer than they used to. Working and relaxing are going to take some serious scheduling!

Working.

Work will be the most challenging issue unless you have already left all that behind. Some, even if financially independent, will still want the cut and thrust of a career, while most will need some kind of compromise position.

Some jobs lend themselves to a more sedentary lifestyle. If this is where you are, that's great but you may still not be able to cope with long hours. Other jobs which are more manually demanding or require the operation of dangerous machinery are likely to be too challenging.

Resting.

Resting is easy, just put your feet up, right? However, if you are travelling you will need to think things through, things that you never considered an issue before.

Getting back to work.

Engage your employer.

Hopefully your employer is understanding, if not you may have difficulties ahead but here are a few tips which might be helpful.[3]

  • ☑ Make sure your employer knows what has happened to you at the earliest practical date. No point in trying to hide it.
  • ☑ Phone regularly with updates and confirm in writing.
  • ☑ If there are aspects of your work that can be done from home, try to get this organised as soon as practical.
  • ☑ If your work is likely to be too physically demanding, is there another job in the same company which is more suitable?
  • ☑ If it all looks like going pear shaped, brush up your c.v. and start looking around.

Inform others.

Think about your new circumstances and how this might impact on tax, benefits, disability concessions and so on. This will of course vary, depending on your country of residence.

Decrease the pressure.

You probably need to accept that you will have to work fewer hours or in a less demanding role than before. If you believe you are made of sterner stuff than that, then please take care to recognise any warning signals of a relapse. Be in close contact with your doctor.

Learning to relax.

Set time aside.

Note what makes you tired and schedule time to relax with your feet up. A good balance of exercise and rest will help in your recovery.

Have a good holiday.

This is a good aspiration and goal, after all you have been through tough times, you deserve a break! Make sure it doesn't turn into another nightmare though, it doesn't have to if you recognise the challenges and pitfalls.[4]

  • ☑ A local city break may be a simple start!
  • ☑ Look for easy transport, disabled facilities, no stairs and so on. Walk though how you will get through each day in your mind's eye.
  • ☑ Longer breaks, particularly if going abroad will need more careful thought.
  • ☑ There are insurance companies that cater for people with rare conditions, you should check with social media sites as this type of information changes frequently.
  • ☑ Check with your consultant that what you are planning to do is advisable.
  • ☑ Make sure you take the right medication with you and enough of it. Keep it in hand baggage.

Above all, be certain that you are ready.

New challenges.

There is a sense too that you need to challenge yourself with new leisure activities to replace some of the old ones. So don't just try to replicate the past but in a lower grade way, do something you have never done before, or have always promised yourself but never got round to it. Wouldn't it be great if you could start to associate your EGPA with some of your best moments!

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