Post 655 I am tired but still, my fire... - My MSAA Community

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Post 655 I am tired but still, my fire burns 22 Jun 2020

RoyceNewton profile image
9 Replies

G’day my ms family. This disease is a lot to bear sometimes. Okay, a lot of the time. I find it very hard in Summertime. Like most people with my disease, I find summer very hard. Long ago I used to be excited watching the morning aviation weather and thinking about how lucky the pilots in Arizona were. Getting warmth and sunshine as I still shivered in Atlanta. How nice it must be, Now I am in Arizona I dread the moths stuck inside my house because of the heat. I can not even go for a drive because everywhere is hot. I still do but the driver still complains because I have the air far too low. I think 70F is a good temp but others disagree.

The tensions around the world are certainly no help. It really stresses me that I can do nothing about it, merely be a victim of the waves crashing against the civilized shores of the world

. It is a lot like ms. I am a victim. As are “YOU”. There is nothing that I can do to stop it. I can not make it go away. I do not even know where it came from, what did I do. NOTHING, it just is. It happened to “US”. it is now time to live with it. Be frustrated, angry. At times despondent, but always to live with it

I will not surrender, I will not cave in and hideaway in a cold dark hole. NO, I will not live my years like this. I have many years ahead of, as do “YOU” I may never again be able to bask in the bright sunlight. I may forever be trapped in the twilight of my ms dungeon, but I CAN accept this. I WILL make a life for myself here. Sometimes I may wander closer to the light, but I am fasted to always retreat back into my dim shadows. This is my lot in this life and I mostly accept it. “YOU” might as well.

I believe I will try to make what I can around my bright and fresh. There is no reason to retreat totally into the gloom of this illness. Try to make your surroundings bright. Give your knitting bright colours. Make your life bright and hopeful. This disease creates every advantage that it can to drag “YOU” into that gloom and sadness of despise, weakness and fear. There is a better way, there is a way to thwart it.

Know technically what ms is doing to your mind and body. If “YOU” are willing to know this “YOU” will Know what is happening to to your body. Know what is happening and perhaps “YOU” can find away around it/, if even just a little. Find a little way to thwart it and “YOU” give yourself some advantage. “YOU” are fighting back, even if it is just a little, “YOU” are taking back a little control. Do not be disheartened by setbacks, ms is a wily and cunning enemy, but “YOU” are a homo Sapiens. This is a game that “YOU” can play and play very well. There is no reason to surrender and give up. “YOU” can adapt, find new ways forward. Accept setbacks and never give up. “YOU” are much better than a mere disease. MS bit off more than it can chew when it bit “YOU”. I bite-sized morsel, “YOU”
 are NOT.

Within “YOU” there is a strength. A fire that is growing stronger by the moment. Feed it, make it a massive firestorm. Let “YOU” be seen from space, be a light that others can follow. that they can warm themselves around, be that beacon of hope and strength that somebody else may need. “YOU” can because “YOU are “YOU” and “YOU are strength. Thank you for being “YOU”.

Royce (your ms writer)

I see your light

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RoyceNewton profile image
RoyceNewton
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9 Replies
MixedBag profile image
MixedBag

I am a vampire that goes to sleep at 10:00. YUCK. I don't know what to do. I used to be that light. Now at 5000 feet I dance around the light You can get a sunburn in the car at that altitude even if it's70 on the inside. I thought you posted a picture of Chicago burning?

Smithnova profile image
Smithnova

So, so agree with you. I used to be the freeze baby, now at 72 degrees I am melting. Every season presents a new challenge. Summer is too humid, too hot. Never thought I would say that, use to love being outside soaking up the warmth. Winter elevates the pain with the cold and dampness; but no need for bulky clothing anymore. Love, love those cool breezy spring and fall days.

MS is a huge forceful bully, but find your peace, except the challenge. Yes life is completely different, I barely know me anymore; but every day I push forward. Anger and frustration are daily, as each day I find a once easy task now a struggle. But depression, that I fight. I will not allow this MS to take my mind. It may take my abilities but it will not not take my way of thinking.

Make every day, every struggle, worth the power you have control of, it's inside you. Most of all stay cool, avoid negative triggers and find your new joy, your new strength. Curse MS.

2littletime profile image
2littletime

Thank you, Royce...you did it again! Every time I read one of your posts, I feel stronger, more able & way more capable! I am surely ready to face my day...👍😋

Violonchelo profile image
Violonchelo

👍

carolek572 profile image
carolek572CommunityAmbassador

And I see your light, Royce :-D

RoyceNewton profile image
RoyceNewton in reply tocarolek572

and I yours, life is good today, hot but good

carolek572 profile image
carolek572CommunityAmbassador in reply toRoyceNewton

Stay cool :-D

Sandydemop profile image
Sandydemop

Dear Royce, the end of your post really spoke to me when you said MS bit off more than it can chew when it bit me. That's the truth. I am trying new things. new eating, new exercise, new spiritual stuff. Everything. I am determined to be the light i want to see in others. thanks for your inspiration.

RoyceNewton profile image
RoyceNewton in reply toSandydemop

No problem at all I hope it helps a little

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