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So, Chloe. I know you're panicking but read this and try to be PATIENT.
- Drink plenty of water. I know it's a faff getting to the loo, but it's going to make you feel more fatigued and down in the dumps if you don't drink enough.
- Don't be tempted to drink alcohol...even if your daughter has done something momentous! The steroids make it taste horrible and it makes you feel queasy and it doesn't help your symptoms at all.
- The symptoms you are feeling ARE normal, you just don't have relapses that often so you've forgotten.
- Don't panic if something new crops up, like the left hand 'claw'. Just because it's new, doesn't mean it's going to stick around for ever.
- You NEVER feel better while you're taking your steroids. You should have remembered that one at least! You'll feel utterly crap and helpless for the 5 days, then it's normally at least a couple of days after finishing before you start to feel a little better....so HANG IN THERE.
- Staying in bed and feeling sorry for yourself isn't a bad thing. You're completely entitled to. However, you always feel a bit brighter if you get out of bed and have a change of scene..even if it's just sitting on the sofa.
- Don't freak out about having to use the wheelchair. It's only temporary and you will get stronger. Even when you do feel better, use the chair as an option so you can take part in things and go places. Just because you can walk and often don't look disabled, doesn't mean you don't qualify to use the wheelchair. You know your symptoms and you need to stop worrying about what people think of you.
- Try and get some fresh air every day.
- Have a cry. It makes you feel better.
- BE PATIENT! Recovery takes time, so don't get down in the dumps if you're not back to normal after a couple of weeks. Think about what your body has gone through and how important it is to give yourself time to recover. Even if you feel better, you don't REALLY feel better. Not 100%. So don't try and get back to 'normal' life straight away. You'll just prolong the inflammation and the time it takes to go down, which is dumb. Your body needs to REST and MEND.
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I have to say, thank you and I really love this post. Its like i've written it :) x
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