What do you do if you're having a difficult day (either mentally or physically)?
Are there certain things that help?
Have you learnt strategies for coping?
Let us know in the comments 💬 It could be a relaxing bath, gentle exercises or a chat with your friends....
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We look forward to an early bed, and hope the next day is less challenging. We look forward to Netflix. Our garden is another haven to go to in this good weather. Friends aren't always the solution, because our life is so different to theirs, and - no matter how kind they are - they still have their own agenda, which is NOTHING like ours.
Thanks for sharing the ways you manage a difficult day. The weather is perfect for spending time in the garden at the moment. Do you find the time of year impacts on how your feeling? And your condition? I can understand why friends may not always be the solution as no-one can really understand how it is for you. We hope this community will provide a space where people in a similar situation and facing similar challenges can come together to support each other 💙
Time of year makes no difference. Feeling healthy, and having a good night's sleep are the crucial factors for dealing with my adult son, who has cALD and AMN. I'm lucky, as a carrier, because I have few symptoms myself - even though I am 70 years of age.
Thanks for your response. It sounds like you've found the things that are important to look after you - which mean that you can then look after your son. It's good to hear you haven't got many symptoms yourself, are these physical symptoms? Is there anything that helps manage these?
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drugs for 8 years old boy suffering ALD
Difference between AMN and ALD
Genetic testing for under 16s
I have 3 sons who have just been diagnosed with ALD