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Any Advice For Coming Off Medication?

A MyNarcolepsyTeam Member asked a question 💭
South East/Greater London, England, United Kingdom
August 8, 2023 (edited)
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A MyNarcolepsyTeam Member

Wow! I feel that Ryan B really nailed it his response to you. While some may look at his words as negative, I understand exactly what he is saying. I was a single Mom when diagnosed, working full time. By the end of a work day, I was so exhausted that my evening role as a willing tutor for homework and my efforts to ensure my little family had the experience a "weekend warrior" mentality can provide, went quickly by the wayside.

Sarah S. was also on point when she confirmed the challenges parenthood presents for EVERYONE - not just those with a chronic
& life-changing disease. In your situation, I would encourage you and your husband to make a workable list of what the role of parent will require in your specific situation. Remember that they are not only household chores/obligations: who can be the much-needed after-school chauffer that enables your child to participate in after school sports, music lessons, etc. Paramount is the emotional support your kids need from you. If you are having emotional difficulties with your Narcolepsy, that is going to affect the dynamics if the entire family.

All of these points can be worked out. Make sure that you plan accordingly with a BIG dose of reality and you will be fine! Good luck!

August 17, 2023
A MyNarcolepsyTeam Member

Thanks for your honesty and I am sorry to hear you feel you made a mistake.

I absolutely agree it is a monumental task for anyone even without an added challenge.

We are very lucky to have a strong support system around us so I am confident we are up for the challenge.

My concern is more the time between coming off and falling pregnant when life still carries on as normal with working etc.

August 13, 2023
A MyNarcolepsyTeam Member

Sarah, most folks have a certain amount of anxiety and doubts about having children, and well they should. It is a monumental job and many couples are not really up to the task. If you and your husband are mentally and emotionally up to the challenging tasks that parenthood will bring, go for it. But if you have any doubt, lack the emotional and financial strength required to bring a new life into this world, pause and reconsider this giant step. Narcolepsy is so pervasive and it affects every part of one's life in a negative way only, i.e., there is no upside of having narcolepsy, and you two must consider how much you will be able to deal with in the future. I am not trying to be critical or negative here. I made a big mistake when my wife and I decided to have children, and I hope whatever you do will be the right thing for you. I wish you health, wealth, and a lifetime of happiness.

August 12, 2023

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