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Tips for handling MG on a daily basis

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Courtney_J

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25/04/2022 at 00:45

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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1,280 comments posted | 17 in the Myasthenia Forum

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Hello everyone,

Hope you've been doing well lately.

MG can be quite difficult to cope with on a daily basis. How did you adjust your daily life when you found out you had MG? What helps you manage your daily activities?

Do not hesitate to share your tips with the community.

Take care!

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Courtney_J

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11/05/2022 at 00:24

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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1,280 comments posted | 17 in the Myasthenia Forum

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I think this thread does not have much visibility, so I'll tag some of the members here in case they haven't yet seen it ;)

@AlmostFrench @Eve134 @chezza2409 @Heathergem @Geraldine4459 @Darukswoman @silson @Lindybee @Ellielay @kerryab1 @NicoleS @Trishna @AndrewJackson @michelle.oliver @sschishaq @1234Mysthenia56 @RebeccaCopson @Priscillajess @Amyanna @Aurelie @LiudmilaTerekhova @dave125norco @jonscfc

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Courtney_J, Community Manager, Carenity UK

Tips for handling MG on a daily basis https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/tips-to-handle-mg-on-a-daily-basis-4575 2022-05-11 00:24:49

RebeccaCopson

11/05/2022 at 09:32

RebeccaCopson

Last activity on 11/05/2022 at 09:29

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Unfortunately I had to stop working and now my life is very different from before. I now take each day as it comes and try not to get stressed about things. Do gentle exercise then rest and repeat.

Tips for handling MG on a daily basis https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/tips-to-handle-mg-on-a-daily-basis-4575 2022-05-11 09:32:39

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Courtney_J

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27/06/2022 at 00:21

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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1,280 comments posted | 17 in the Myasthenia Forum

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@RebeccaCopson Hi, sorry to hear you had to stop working! What did you do for a job?

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Courtney_J, Community Manager, Carenity UK

Tips for handling MG on a daily basis https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/tips-to-handle-mg-on-a-daily-basis-4575 2022-06-27 00:21:38

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11/05/2022 at 11:08

I can't seem to get a middle so to speak I'm either feeling worse or just slightly better

Tips for handling MG on a daily basis https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/tips-to-handle-mg-on-a-daily-basis-4575 2022-05-11 11:08:39

Courtney_J

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11/05/2022 at 23:46

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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1,280 comments posted | 17 in the Myasthenia Forum

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@RebeccaCopson Thank you for commenting!

Do you think that quitting your job helped you in any way? Feeling less tired, for example, or having more time to take care of yourself?

@dave125norco thank you for commenting!

What do you think helps you feel better (when you do)? Do you do anything special for it?

Thank you both for sharing!

Take care,

Courtney

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Courtney_J, Community Manager, Carenity UK

Tips for handling MG on a daily basis https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/tips-to-handle-mg-on-a-daily-basis-4575 2022-05-11 23:46:37

Unregistered member

11/05/2022 at 23:53

I tend to just try to gather myself a bit take 5 mins out that happens about 6 times a day

Tips for handling MG on a daily basis https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/tips-to-handle-mg-on-a-daily-basis-4575 2022-05-11 23:53:35

Zaphod001

13/06/2022 at 14:31

Zaphod001

Last activity on 03/09/2024 at 14:01

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The true snowflake disease. No 2 days are the same, no two people experiences are the same! A major predictor of a bad day for me is if I start sweating when I get up in the morning even at relatively mild temperatures. The fatigue can be the most difficult to deal with. I think you have to find your level and remember that you need to rest between activities. Get used to the new you! If you don’t have the energy to do something - just don’t do it. There is always tomorrow. I don’t think you can push through, you’ll just make yourself worse.

Tips for handling MG on a daily basis https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/tips-to-handle-mg-on-a-daily-basis-4575 2022-06-13 14:31:18

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Courtney_J

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27/06/2022 at 00:22

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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1,280 comments posted | 17 in the Myasthenia Forum

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@Zaphod001 thanks for sharing!

How would you describe you good and your bad days?

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Courtney_J, Community Manager, Carenity UK

Tips for handling MG on a daily basis https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/tips-to-handle-mg-on-a-daily-basis-4575 2022-06-27 00:22:57

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SAMANTHACARTER

10/11/2022 at 18:18

SAMANTHACARTER

Last activity on 24/08/2023 at 22:29

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I had got Myasthenia Gravis In June 2021 and thanks to The Royal Hospital in Leicester NHS team got into the Royal very quickly. I had 7 days in the hospital and I was released has they had managed the MS through lots of pills. When in Hospital I met several Doctors and they had teams with them to understand MS especially as I had the full MS which i was told very rare. For myself I was able to live with MS and in the main I have no issues with what the MS gives and i just take it as we can beat it.

Hope that helps and I look forward to being in carenit

Tips for handling MG on a daily basis https://www.carenity.co.uk/forum/myasthenia/living-with-myasthenia-gravis/tips-to-handle-mg-on-a-daily-basis-4575 2022-11-10 18:18:52

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MaggieMG

Edited on 18/11/2022 at 16:13

@Courtney_J My symptoms came on rather suddenly, almost overnight. I thought at first I was having a stroke because you hear about the face drooping when that happens. Then I thought it was stress or fatigue but then when it didn't go away I knew it was something else. I went to my GP who told me to go to an eye doctor. Then there was some back and forth with the GP who finally ordered tests for me. It was awful waiting for the test results.

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Unregistered member

21/11/2016 at 15:19

I had a hip replacement 16 months ago due to osteoarthritis. I can honestly say it was the best decision I have ever made. Yes I was not looking forward to everything post op, but I am now 100% mobile and after not being able to walk any distances I now enjoy walking again and I've managed to lose 2.5 stones. Totally pain free and I've had lots of comments about how much happier I look - my face was obviously showing my pain. If you have any questions please ask!

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MaggieMG

Edited on 18/11/2022 at 16:13

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Unregistered member

21/11/2016 at 15:19

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