“Life isn’t about waiting for the storm to pass…It’s about learning to dance in the rain,”
- Vivian Greene
1. Choose the people that surround you.
When you get diagnosed with a chronic illness, especially a less common one, expect one thing: doubt. It may be from the people you love most, from your friends, family, work colleagues. Most of the people will become more aware of it and understanding as time goes by but some people won't and it's easier to cut them out of your life. Choose the people you keep in your life, you don't want them to be your demise.
2. Exercise.
No, I'm not talking about going for a morning jog. I'm talking about exercise of the mind. When you're going through a bad spell and you're on your own a lot of the time, you will drive yourself crazy and anyone you see, will also drive you crazy. Do meditation, do simple yoga or Pilates, scream, cry, sing at the top of your lungs (All methods have been tried and tested by me...they work!), do whatever stops you from losing your mind.
3. Don't isolate yourself.
This is one I still haven't quite got to grips with. I know I should see my friends and I know I should see my family but the harsh reality is, I don't. When I go through bad spells, for the first few weeks, I won't leave the house and I won't see a soul. It's not healthy and you get consumed by your thoughts. It's only as I'm nearing the end of month two of the bad spell now that I'm happy for people to come round or I'm happy to go to the park with my sister. Isolating yourself is dangerous when you're going through a bad time, so welcome company, if and when you can.
4. Get yourself out there.
No, I'm not saying take a hike up a mountain. Or go out clubbing and get drunk. But don't be afraid to go out. Set yourself realistic goals around how you feel on that day. Only you know how you feel and what you can manage so don't feel guilty when having a good day and the negative people in your life say, "oh well she's fine because she can go out for a few hours one day" - see tip one for what to do with those people. At the moment, I'm trying to get out at least twice a week. Even if it's to go and have a coffee with a friend, or sit round a family member's house, these little trips may be draining and you may need a nap after but they will help your sanity.
5. Be honest.
Not just with other people, but with yourself too. You can live in denial, pretend you're fine, pretend to others you're fine and you can tell your friends and family, "oh I can't come today because I need to clean the house". Everyone close to you knows you can't clean your house for more than 5 minutes without feeling like you're going to collapse so they know you're lying; this I've learnt the hard way. If you have something planned and you wake up feeling lethargic and dizzy, admit that to yourself and then tell the person you have plans with how you're really feeling; yes it's frustrating cancelling plans all the time, for both parties but they'll respect you and understand you a lot more if you're honest about what you're going through.
There's no manual for how to live with a chronic illness so you have to find out how to cope in your own way. It's taken me a long time to get to where I am now and I'm still not at the end of my journey but that's okay, because I'm getting there. Bear Grylls once called me his hero so I will finish with a quote by the man himself.
"Being brave isn't the absence of fear. Being brave is having that fear but finding a way through it".
- Bear Grylls
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