Look Me Up

I used to have the motto "I will sleep when I'm dead" and was a member of the #nosleepcrew. I was approaching Fourty and for the life of me, I couldn't slow down. And then I relapsed, and while in relapse had my identity stolen, a partner desert me, had hardly anyone check on me and my kids, and it was bad. It was crazy and I had no help.

When I came close out of the relapse, my place was a shambles and there was a pest infestation in the building I was in and I just wanted out because management wouldn't move me or resolve the problem. Because I wouldn't pay the rent,  I had to go to eviction court and because I could not speak for myself due to nervous feelings, I got evicted. I didn't have it in me to fight, so  I began to find my way back into the world. I had a lot of Fatigue, but I pushed through. I was on about twenty active meds at the time, and was scaling them down slowly but surely. Pills kill. That was in 2011. My, how time flies.

"My best advice for anyone that doesn't understand MS is to load them up with books, watch "When I Walk" available on Netflix, or have them attend an MS dinner with a good program.... Youtube has some very good videos as well.  If they are unwilling to learn more, ask why"  posted someone in one of the MS support groups I'm in. People truly don't get it yet, and I hope they will soon. I go through so much and yet I'm still here, just fighting for a chance. I'm blogging while laying on my back and before I laid to the side then before that I propped myself on my elbows. I can't sit up very long without hurting and I have to move around and pretty much lay in all kinds of positions to find comfort. It's exhausting..really everything hurts but I'm treating for the pain. I'm learning to grow my own medications and this means I will live longer. I don't want what happened to me before to happen again ever. I'm safe now, but I don't want to be sick any longer. I'm fighting for a cure.

Please take the time out to research Multiple Sclerosis. I say look me up, but what I want you to do is research this disease that I have. I share my story so that it's told, and also to help others. I am writing 4 MS awareness. There's no cure but I'm fighting to live and hopefully by spreading awareness I can help save others from what I've experienced. My advice to anyone with MS is to build their support team so that they can take care of their family and take care of their health. I'm fighting so hard and I'm tired...and I choose to sleep now because Fatigue is kicking my but, but I'm not dead.

Being in the plains near the mountains, I'm  in fresh air and sun. The sun is hot for me since Colorado sits high and is closer to the sun. I can't perform in the heat but when it cools down I go outdoors. I do yard work and climb stairs and walk dogs everyday, so I'm getting plenty of exercise (and soreness). By nightfall I'm tired already and with my treatment I'm able to fall asleep with no problem. Day 15 with no Temazepam... And for an insomniac like me its amazing.

Our teacher had me watch Super Soul Sundays and it really hit me back on my path. Rafael is ensuring that I get better and this is the first time I've been supportive of a MS treatment...most times non of the pills actually work and do more harm than good.

In July 2015 I'm still dealing with identify theft issues, but I'm also pill free. Now I have to find the treatments for some of the other symptoms. I'm trying to document more so that we have records. So much of my life has disappeared from my memory so I want to capture the rest of it by writing so a cure can be found. If I can help other MS patients live a drug Free existence, I will.

Cannabis is not a drug. It's a plant. And GOD gave it to us. It's our right and our hope for today.

 

Me vs the sun

It's 9:22am. It's too hot to go out. I'm disappointed. I knew I would be. The sun makes it impossible to get anything done until its cooler. Heat or high humidity can make many people with multiple sclerosis (MS) experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently. Most people with MS avoid hot baths, hot showers, and heated swimming pools.

Some of the things I do require assistance. Most things, actually. Motivation is needed. This is depressing because in my heart I want to do so much. I suppose it's fair that I have to wait on others since so often they have to wait for me, but this is truly handicapping. The Aviary is really too heavy for me to complete alone, so when its too hot we can't do anything.

Last year I never got things done. Housework was impossible because nobody wanted to help me and I have issues lifting,pulling, bending,pushing,etc. This year I have to do better about making better choices for myself, and to get the help I need. It worries me when I can't get help. Oftentimes money is the obstacle. Or willingness.

Fighting depression is a task for anyone. I'd feel so much better if my daughter was near me. Today will be a better day...just gotta be patient.

The bigger picture

I'm pushing myself so hard out here in Colorado. It's amazing to see myself do things I never thought I'd be able to do. I'm exhausted, though. With every little feat, I'm perspiring and light headed. But I've got my eye on the prize.

I suffer from MS Fatigue, and that's why I'm exhausted. "Web MD" does a decent job in describing MS Fatigue, something that so many of the MS patients I know suffer from, including our roommate Des, another MS Patient.

"Multiple Sclerosis and Fatigue

Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone -- it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night's sleep solves the problem.

Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved bysleep. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life.

According to the National Multiple SclerosisSociety, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity, and comes on more easily and suddenly than normal fatigue."

7:33 am and I'm waiting on Rafael so I can start my day. Honestly all I want to do is lay down, but if I did it would mean admitted defeat, and I can't lose. Putting up this Aviary means that when something crosses out path, we are up for the challenge. It symbolizes getting better and stronger. I need this just as much as the birds do.

Being a part of a cause bigger than yourself inspires you to do more. It's imperative that my team helps me win, because I'm going to help them win. These birds deserve a better life and our teacher deserves happiness (she does so much to help others).

As I rise, my hope is that my day goes well and that I'm able to do my part without obstacles getting in my way. After this task is complete I hope to complete the new MS program I'm working on. This Colorado air will do MS patients good. I see the bigger picture.

FATIGUE OR JUST TIRED

NORMALLY THIS WOULD BE A GREAT PIC FOR WHEN I'M FEELING WOBBLY.  IT HAPPENS.  BUT TODAY I DIDN'T TRIP....

I had a fatigue attack today.  

I'm not in the closet with my MS at all.  I used to be.  I had such a stressful morning that by the time I got back home,  I began to get extreme fatigue and nearly passed out.  Which was fine because I was at home near my bed. When I got up, the stress was a bit better...but still stress. Now I'm going to go talk to a MS support group and some other support groups I'm in because obviously I can't handle this on my own.  GOD is LOVE and so I have that on my side.  Now I just need to take care of me a bit better. 

Life is stressful. As a married woman, there's additional stress sometimes.  I have a really good marriage but we have some issues that sometimes can be a bit stressful for me.  I'm trying my hardest to remember the lessons in life that I've learned along the way. One of the greatest lessons I've learned is not to allow anyone to steal my joy. 

I have to remember now what a joy it is to wake up each and every day. I have to remember that when I'm pacing around looking for something at the  last minute and it causes my husband to stress, to remember that my pacing around is not me, and so I am not the cause of his stress. That's his. He is stressing because he loves me and doesn't want to see me pacing around looking for lost items.  He doesn't have to stress over me stressing; I suppose that's just his way of loving me or his way of handling things.  I don't know. I have to not get stressed, though,  because he is stressing about me stressing...because that just adds to my stress.  I'll probably forget it next time it happens and it may take a few times of me trying to remember not to, but thankfully this blog will help me go back over these little tid-bits about ME. 

http://www.gofundme.com/write-4msawareness