Have courage and be kind
**Random quotes found on the net that touch my soul…
Category: Ramblings
It really is OK!
I haven’t slept all that well for the past couple of days. Might have something to do with my 1 PM wake up call yesterday and the very strange sleep that went along with it. š¤ I’m not OK. It’s not that anything is wrong, it’s just that the reality of my life sets in every once in a while and grabs a hold. Small things, like watching a movie and someone rolls over in their bed and cuddles their pillow, causes tears to fall from my eyes. Oh how I wish I could roll over on my own and cuddle my pillow! āļø (I know it’s a cloud I couldn’t find a pillow, LOL)
The funk that I’m in is bound to pass soon. I just get so frustrated being trapped 24/7/365. Lately I’ve been very angry at myself for becoming depressed. My new positive outlook is making everyone so happy that I feel like I can’t have a bad day. š¤·š»āāļø I have to remind myself that I am human. I have to remind myself that my situation is pretty fucked up. But, I also have to remind myself that I will get through it. It is kind of funny to my twisted mind that I’m worried about upsetting people if I get upset so I’m trying to say happy so that everybody else is happy so that no one is upset. Wrap your mind around that one. š¤
As I am sitting here, watching a horror movie trying to write this blog, the theme from the ‘Banana Splits’ show is going through my head.
The banana splits TV theme song:
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
One banana, two banana, three banana, four.
Four bananas make a bunch and so do many more.
Over hill and highway the banana buggies go
Comin’ on to bring you The Banana Splits Show.
Makin up a mess of fun
Makin up a mess of fun
Lot’s of fun for everyone.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Four banana, three banana, two banana, one.
All bananas playing in the bright warm sun.
Flippin like a pancake, poppin like a cork
Fleagle, Bingo, Drooper and Snork.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la lad la.
Tra la la, la la la la.
And that my friendsā¦ Is how my mind works. š
Have courage and be kind!
One minute at a timeā¦
When my alarm goes off at 9 AM to remind me to take my morning medication, I grab my bed remote sit up a little bit, take my meds. Then, normally I will call to my son to bring me a cup of coffee and try and start my day. Ā However, for the past week or so my alarm goes off, I will grab my remote to sit up and take my meds, and then I just lie back to go to sleep. I was in that mode of, why does it matter if I wake up right now, the same thing that happened yesterday itās going to happen today so who cares. When youāre bedridden, one day rolls right into the next. Every night I go to bed I know that the next morning I will be in the same place doing the same things for the whole day.
Then, finally, at around 1 PM I told myself and to pull up my imaginary bootstraps and wake the hell up. It was really hard to do. I literally saw no reason for me to actually awaken. But, I did, and I made it through this day. Ā Minute by minute is the only thing I can hold onto. Any longer than that and Iām not sure what would happenā¦
The one thing I do know and I am very sure ofā¦ I AM an MS Warrior!
Have courage and be kind!
Holy elephants Batman, which way is up
Right now it is 2:45 PM on Thursday. I just woke the hell up. I guess itās better than yesterday when I woke up at 3:30 PM. I went to bed at reasonable hours both nights but my body just does not want to wake up. Maybe itās because I know what itās waking up to. Ā Maybe after all this time Iām just sick and tired of dealing with it. Iām just not quite sure why it all is hitting me so hard right now, but itās Ā itās as if the light at the end of my tunnel is a locomotive coming right at me. Iāve been searching my mind as to why everything is hitting me so badly and I cannot figure it out. Nothing has really changed in the last 4.8 years of being completely bedbound, fuck it the last 5 years ( yes I am rounding up )Ā to make me feel so lost right now. Or maybe that is the problem, that nothing has changed. I am a grown ass woman who has never been afraid to speak my mind, tell it like it is, Ā or go toe to toe with someone who is a complete dickwad. š But, this piece of shit MonSter that is MS is a different kind of enemy. Ā It is very sneaky and it takes away from your soul not just your body. It not only affects the recipient it affects everyone around them that loves them.
Ā I really am trying to find that blessing. It just seems so out of reach. I know everyone says that Iām lucky because I have the gift of life. And believe me I completely understand that. But is living in a bed every day, every night, every week, every month, really living? Ā I donāt think that people understand that this part of my journey is not going to change. Ā I canāt do any of the treatments so Iām as will continue doing what it does and it will continue to progress. So what does somebody do with that? How do you find that blessing knowing that the help that is out there now for your disease, you are not allowed to do. So I think I just have to say fuck it Ā and be like cookie monster and when itās unpleasant just eat the fucking cookie. A medicated cookie but you get the idea. š
Ā Tomorrow is my pain management appointment with Dr. Nasser. Once a month like clockwork. I have a list of things to ask and the way Iām feeling Iām pretty sure Iām going to end up being a little forceful when I ask. By forceful I mean I will probably be in tears begging for someone to help me. šĀ Yes, ugly tears. Iām already scared to death to go because I know how bad the pain is going to be when Iām lifted in that Hoyer lift and put in my wheelchair. Hell, just rolling me over to fix my clothes and get me in the lift sling is Is making me sick to my stomach. Fuck fuck fuck you multiple sclerosis!
A little bit of advice before I goā¦ If you yourself have MS and are still able bodied, make a list of everything you want to do and do it now! Donāt put anything off because people with our illness we have no idea what the next day will bring. And if youāre Normie, a person with no afflictions, the same goes for you. Make a list and do the things you want to do now, because even though you donāt have an illness, shit can happen Ā in the blink of an eye. So do what you want to do now. Please Ā I beg of you, donāt put it off for another second.
Ā Have courage and be kind
The prison that is my body
To literally and figuratively be trapped in your own body is tantamount to living in a horror movie. Horror movies are my genre and most days I feel like Iām staring in my very own movie. I wonder when Iāll get my star in Hollywood? šĀ That feeling of claustrophobia that feeling of been unable to move is a feeling no person should ever have to endure. Unfortunately many of us have to live this way every day of our lives. The Normies ( people without any type of illness ) go about their day in a bubble. I know, I was there once. While I was always a person to help others, by opening doors for someone in a wheelchair, by reaching things for people who couldnāt, or just to have a kind word for someone, the truth is Ā I never really saw the person. Ā I could feel for them and wish I could help them in other ways but I never quite understood just how it was living that way. Now that I am that person that needs help I realize just how much our country needs to wake up and give love instead of hate. Iāve had people push me aside in my manual wheelchair because they needed to get something and they couldnāt reach reach something with me in front of them. It didnāt matter that I was looking at something to purchase, all that mattered was I was in their way. I was a third class citizen that didnāt even need to be asked if I could please move for a second. Trust me that person never did that to anyone else ever again once I was through with them, but what if I had been someone that didnāt have a voice.
Thatās the question in my mind every single day. How will I break free, or will I ever be able to. If Iām truly honest with myself I know that I will not get back what I have lost. Iām not saying that in a sad or depressing way, Iām saying it in a medically proven way. If only one doctor had said this to me I probably wouldāve laughed at him, but itās been Ā several doctors have said this to me. I know theyāre not trying to discourage me or hurt me theyāre trying to give me reality. They donāt want me to get my hopes up so theyāre giving me statistics regarding people with my severity of the disease. With primary progressive multiple sclerosis you constantly progress. There is no remission there is no 10 minute break.Ā šĀ There is no relapse that you will come out of and be OK. You just continue to get worse. Ā So now Iām trying to resign myself to the fact that my future, at this moment, isnāt very bright. As you noticed, I said at this moment. While I am a realist, I am also a dreamer. So I will continue to do my exercises, I will continue to fight this MonSter. Ā But Iām scared. Even those with MS will, I pray, never have to be trapped like this. The disease itself is horrific but the thought of spending the rest of my life trapped in this bed is Ā completely and utterly paralyzing. And I can say, with the upmost truth and honesty… I want to live, not just exist.
Have courage and be kind
…
If only we knew when the darkness would endā¦Ā Ā Have courage and be kind
Fear!
I try to live my life minute by minute because anything else is overwhelming. I know that every living person wonders about their future and what it will bring. Unfortunately when you live with chronic illness that wonder many times turns into fear. Every night I go to bed knowing that when I wake in the morning nothing will be different and it may possibly be worse. š¢ I will still be trapped in this bed, I will still have pain, and I will still have sorrow. Ā But, I will still wake up and try to get through my day as best as I can.
I am human and I canāt stop thinking about what may happen. Statistically I know exactly what itās going to happen to me. I have an aggressive form of primary progressive MS and it isnāt going to get better. I have now been bedridden for four years and eight months and it doesnāt look like itās going to change anytime soon. Unfortunately, for me, rehab aggravated my back fracture that I never knew I had. With that has come so many problems. Whenever my hips are put into the proper aligned position the pain that comes with that seriously makes me not want to move at all or even try to Ā make it through the day. The pain has been going on for a few months now and it is taking over my life. The pain in my lower back is also Ā excruciating to the point where I canāt even sit up straight for a period of time without becoming nauseous. We discussed a facet block but Iām not sure even that will help with my lower hip pain. My husband needs a facet block but unfortunately our crappy insurance has denied it. Even though heās had them before. So now we must fight the appeals process. I cannot do mine until he gets his done, so I think weāre both shit out of luck.
Again, I know everyoneās future is unsure. Ā Hell the minute we are born we start to die. But most people can look ahead in their future talk about wonderful vacations they may be going on family get togetherās etc. I cannot do that because at any given time I may not feel well enough to do anything. Unless they can figure out something with my pain I really have no life to speak of. All my future has in it is this bed in this room surrounded by these four walls. When youāve been bedridden for as long as I have been you canāt just get up get into a wheelchair and go about your day.
Itās an adventure trying to out to get me dressed, in the Hoyer lift, and then into my wheelchair. After that Iām already down for the count. Just doing that pretty much takes away all my spoons for the day. š„š„. Ā And the pain comes with doing that is like Michelle Pfeiffer in the movie witches of Eastwick. š³ Itās hitting me hard today because I had a shower Ā Saturday night, Ā two fucking nights ago and it completely wiped me out. The pain was worse than itās ever been and the nausea was off the charts. So Iām trying to find something and some reason to keep holding on. How do you come to terms with the fact that your future may include you being always trapped in a body that doesnāt work and left in a bed? Ā Lately when I watch movies all I can do is cry. Ā I cried for what mightāve been and what should have been. I also try very hard to understand and live with my new ānormalā. Iām not trying to get pity or be a Debbie downer, but sometimes this shit just really gets to me. I donāt understand what the fuck I did to deserve such an aggressive form of this disgusting disease. When I was diagnosed I had three babies under three and my life was torn apart.
Iām just so tired. Even Warriors fall apart at times. Iām just not sure how to put myself back together this time. It was just a fucking shower and my whole body feels like it just wants to curl up and die. And the doctors donāt listen. They donāt seem to care about my back fracture, they act like itās not a big deal. Itās almost as if they feel like, hey she has multiple sclerosis sheās bedridden thereās nothing to do. The way the pain is affecting my life I may just have to do their morphine drops under the tongue. Sadly cannabis isnāt even helping me now. So what, theyāre just gonna throw morphine under my tongue and leave me to die in a bed. The worst part is if I wasnāt stricken with multiple sclerosis they would be able to fix my knees, fix my hips, fix my back. But because of my disease itās not worth it to anyone. Ā Regarding the back fracture, my God, maybe thatās the reason my legs completely stopped working in November 2013. Maybe it wasnāt the MS. But they have no answers for me about that. They basically just said possibly but thereās never any way to tell. Ā So now I am stuck wondering and really wondering what am I gonna do for my future. Ā Have no worries, I will get through this and I will continue to fight. Hell, Iām a fucking MS Warrior! š¤
Have courage and be kind
Inspire
Have courage and be kind
Minute by Minute
One day at a time. More like one minute at a time for me. I really need to believe this and follow it. As of late Iām finding myself wondering about my future with this MonSter of a disease. Ā I need to stop torturing myself. All I can see in my future is nothing but this bed and this room. I donāt mean to be a Debbie downer, itās just whatās been going through my head lately. I know the odds for people with aggressive forms of primary progressive MS. Ā I try so hard not to dwell on what might be, but itās very hard sometimes. I watched a documentary of Annette Funicello and my heart was broken. I know that she would not have wanted to be remembered that way. I could be way off base and maybe she wanted people to see her like that, but there was nothing in her eyes anymore and I wept for her. Ā I am well aware that this disease is the snowflake disease and no two people are alike, but itās still hard to watch someoneās struggle with a disease just like yours. Just like I tell people not to google their symptoms, I probably shouldnāt watch movies or documentaries about people like me. šĀ Again, I need to follow my own advice.
Iām just so over this MS thing! I just want to give it back and get a refund. šĀ Itās like, Iāve tried it I donāt like it, please take it back. In a perfect worldā¦
That is all, for now.
Have courage and be kind! ā„ļø
Bedridden…
bedridden
[bed-rid-n]
1. confined to bed because of illness, injury,etc.
āāāāāāāāāā
Ā Iām not sure whatās going on right now. I am starting to have a hard time being confined to my prison that is my body. Itās now been four years and eight months that I have been in this bed 95% of the time. I think Iām going a little mad. š³ More Ā so than normal. š There are so many things that need to be done in my home and itās making me crazy that I canāt do any of it. And with this finding of my fracture of my back at L1 my mind canāt stop thinking. Ā Is that fracture what caused my legs to completely stop working or is it the MS? The doctors say thereās no way to tell. Will that fracture make it so Iāll never be able to stand or transfer again? Thatās a question I completely forgot to ask at my last pain management doctor appointment. I could just hit myself for forgetting to ask that question. But when Iām there I am so confused and I donāt feel like they even care about it. I mean why should they, right?!
Ā Is it completely futile to keep trying to move? I woke up this morning when my alarm went off and slept right through it. My thoughts were, whatās the point? Ā I might as well just sleep because I canāt do anything else. Ā Around noon I woke up, raised my bed, and my son brought me coffee. I did a few things around Facebook and then came in here to write this blog. I donāt even know what Iām trying to say. I have so many ideas in my head of things I wanna do to help my family. But then reality hits and I canāt really do much to help anyone. I canāt even help myself. I donāt mean that in a pity way. I literally cannot do things for myself. When I talk bedridden thatās exactly what I mean. Ā Maybe bedbound would be better because I am bound to my bed. š¤
Ā I think the part that makes me crazy is that I know what needs to get done in my home and thereās no way to get it done. My kids work, my husband works 50 hours a week and has a three Hour round-trip drive – sometimes more depending on traffic. We canāt afford someone to come in and clean and help me, so WTF! š„Ā Even on the rare occasion that I get up in my wheelchair to go to a doctors appointment, I canāt do anything around the house because the pain is so paralyzing.
Ā The one thing I cannot stress enough people, is if you have the chance to do something and you are able, do it! Donāt wait. Ā I guarantee if you do you have regret for the rest of your life.
Ā I know, Iām kind of all over the place with this blog because, as I stated above, Iām not sure what Iām even trying to say. Iām working so hard about keeping a positive attitude. Ā There are days when itās very hard to do so. I know that right now Iām just having a Ā few bad days and itās not a bad life. Ā Right?
Ā Iām trying, I really am! Ā Iām just waiting for the universe to cut us a break. We need help and Iām not sure how to get that help. Iāve always taking care of things even from this bed and now I feel pretty hopeless and helpless. But, I truly am a warrior, and I will fight and I will find a way for my family if itās the last thing I do! And the reason why, is because Iām the mommy!! š¤
Ā Have courage and be kind!
Making it Through the Rain 