Advice for us all: msERS, most of us know... - My MSAA Community

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Advice for us all


msERS, most of us know but some do not. Start keeping records. Be very anal about it at first and as time goes by ease up on yourself a little. With everything, I will go until I fall down or can do no more, that is how YOU learn your limits. I understand that I will suffer consequences, but this is me controlling something. I may have ms, a chronically disabling chronic lifelong illness but I decided this, I have the control. YOU may be in despair, scared and lost, but everytime that YOU can win a little victory is a plus for YOU. A small deposit is made in your ms bank account. A positive for those days when everything seems to be draining YOU. I was glad of my nice balance when trigeminal Neuralgia came knocking at 1 am for several months. To have the memories of past wins was a huge strength.

Find some of your own & remember them. ms is quite mischevious and the more good things that YOU have, the better YOU will be when ms comes knocking. Remembering always that YOU can not win. The aim is not to win. Your aim must always be to play so well that ms is stopped, for awhile at least.

Imagine a bank vault. Empty at first, but with every good experience, sit up, the sensible healthy meal you ate makes a deposit of a gold coin. Soon YOU can have a large pile of gold, that you can draw on when YOU need strength. Very similar to Gringotts Goblin bank in Harry Potter stories. Of course, our goblin is called ms.

Laughter also builds on our bank balance. Find some humour somewhere and in something. Laugh at yourself, give others permission to laugh with YOU. NEVER AT YOU, but certainly WITH YOU. Have pride in yourself, but do not take everything seriously.

Be kind to your spouse or any potential spouse. It is hard on YOU so think of what it must be like for them sometimes. Having said that if they have to go let them, holding on might end up being destructive for both of Y(OU. Goodbye does not have to be a shattering event, though it likely will be quite traumatic. Mine was anyway, turned out to be the best thing for me. Even though at the time nobody could tell me that. I ended up finding the true love of my life, and she had a pretty cool dog as well.

LEARN to accept that life is a little different now. No more sunbaking at the beach, but YOU are still a beautiful person. Get your nails done, that hair coloured. Just because YOU have ms does not mean that YOU have to let yourself go. If YOU can not do it today, resolve to try again tomorrow or maybe the day after. YOU only have ms, it is no biggie. With some proper management and lots of thinking this my friend is a very doable event in your life. Just rather long term.

Because YOU have read all of this, YOU will have noticed my strange phraseology. Everything seems to be minimised. Trigeminal Neuralgia which is like having ice picks stabbed in your face, soiling yourself over dinner, are no more than a whatever events. Something looked at humouressly afterwards but NEVER a soul-destroying suicidal event. Merely something to be understood, managed and handled. It is all in the way YOU look at it. This breaks some, but YOU, know YOU can, YOU will, YOU are able to do this. Anything that ms throws at YOU, is nothing. YOU can YOU will YOU do, do this illness because it IS DOABLE.

Watch your words they can be very powerful. Always choose the words that give YOU STRENGTH and POWER. ms is a lot of choices, decisions, pick the best ones for YOU, and if YOU make a mistake, shrug your shoulders and say "guess that was kind of dumb, so lesson learned" do not do it again.

Relapsing-Remitting ms is not the end of YOU, merely a sharp unexpected left t0urn in your life. Learn about, be strong, do not be gullible and get on with your very9 long ms LIFE.


realist8ic but very optimistic

2 Replies

Always good and helpful to keep a journal of your health in all aspects, not just MS records, but other doctor visits and why. Medicines & vaccinations. Keep info about your insurances, etc. All of this will be helpful when talking with your doctors or assistants. I hate keeping records, but do what I need to do.

Way to go. just do what YOU have to

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