ramblings of a crazy lady living with MS
I call this issue my spiders. It feels like thousands of teeny tiny little spiders are running all across my body. But alas, there is nothing there. Although, one night, I found an ant on my arm. š¤š
Unfortunately thereās not much you can do for it. Itās just another issue we learn to ādeal withā š¢Ā And that is why we are WARRIORS!! š¤šŖ
Have courage and be kind!
#MSWarrior #TheBedriddenLife #MarchIsMSAwarenessMonth #NeverGiveUp #PPMS
This popped up in my memories on FB and I really needed to see this today. Iām starting to not feel very strong and the last couple of nights I can not get comfortable at all. At night my legs become very heavy I guess thatās how to describe it and thereās moments when I canāt feel them and it scares me. I have become very anxious and ready to let go but then something happens and I make it through. Iām starting to really hate being trapped in his bed. Itās been five years and two months and Iām seriously fuck Iām not even sure anymore. š
I really do believe Iām going on a little mad. LOL oh well life goes on and so will I. š¤š
I think the hardest part is I know what needs to be done but we donāt have the resources to do it. Ā And when I said above that Iām going a little mad, there are times I really think I am. š Iām having issues again with sleeping and falling asleep Ā because I really believe my body doesnāt know what it is supposed to be doing. Itās always at rest so how does it distinguish between when it should be asleep or awake. We are using pillows to slowly help keep my legs in more of a proper position but I donāt even know if itās gonna work. They have been flopped to the side for so long trying to put them back in the position is Ā horrifically painful. The key here is baby steps.
I donāt want to sound like a downer but I just donāt know if I can do this for another five years. When I say Iām bedridden I donāt mean that I can transfer into my chair and get up and cruise around I mean Iām trapped in this bed. The only way to get out of this bed is with the Ā Hoyer lift. And being lifted up and that is so painful I think thatās whatās keeping me trapped in this bed. Just donāt know anymore. Iām scared, Iām angry, but at the same time Iām ready to kick some ass and fight. I just hope my fight stays stronger than my fear.
Have courage and be kind
Lately I think I do a lot of this in regards to doctors appointments etc. My procrastination comes from the fear of the pain it will cause to go to said doctors appointments etc. Just taking a shower is painful AF. And itās all about my hips due to the fact my legs have been frog legs for over five years now. Ā And my husband rolls me over on my side I canāt explain the pain in my hip joint area. And then the moment I am in my Hoyer lift and he starts to raise it up, as my hips turn in their joint to the proper sitting position all I can do is cry. Ā My left hand which I have problems with, already ends up in a claw like fist when the pain hits and I literally canāt speak or function. And therein lies the main reason I donāt want to get up anymore. I can no longer handle the pain. I donāt even want to go to my pain management doctor because asĀ I stated above it hurts to get up and be a normal person sitting like a normal person. So what can I do? I try to move my legs as much as possible on my own which is sometimes futile. My family canāt do it they have lives of their own and my husband doesnāt have time to work with me every day.
Unfortunately like you see in the movies people that are ill have caregivers that come in and out of the home. Itās not like that in real life Ā unless you can afford it or the state provides it. Ā Neither of which will happen for me. We live paycheck to paycheck but supposedly we make too much to be allowed help. Go figure š¤·š»āāļøĀ I wish it were like the movies because then I would have a physical therapist helping me daily, someone to help with my meals, showers, and my well-being. But itās not like the movies. Lately Iāve noticed people are talking about the celebrities that have been diagnosed with MS blah blah blah. I feel for them, I do, but I donāt believe they go through the same types of issues that many of us have. They can afford getting the help they need and all that comes with being a celebrity. Ā I completely feel for them because theyāre stuck with this fucked up disease, but I guarantee having money makes Ā having chronic illness a bit easier. Or maybe it doesnāt. What do I know?!
I really donāt mean to sound so bitter, but I am a little bit. LOL I think this is all coming out right now because itās a new year and I am very clearheaded and I am confused and afraid because I really donāt know where to begin or how to get myself better.
Fuck itā¦ Iāll think about it tomorrowā¦ Because tomorrow is another day.
Have courage and be kind
Most people at this time of year are thinking about their New Yearās resolutions getting ready for all the new things to come. Iām lying here completely lostā¦ I feel like Iām in the twilight zone. This year my house was not decorated for Christmas and it was actually just another day. The holidays are not the same for me anymore because I can no longer get up and get my home decorated and make it feel Christmasy. Ā Iām telling you the Christmas times when I was better my house was decked the fuck out and looked awesome! Ā Oh how I miss that!
Iām just void of emotion right now. Ā Like everyone on the planet none of us knows what tomorrow will bring. Although I do knowā¦ Itās just going to bring more of the same of me lying in my bed looking around at my four walls wondering why Iām even here anymore. What is my purpose? Ā What is the point of life when you canāt live it. I know Iām blessed that I get to wake up every morningā¦ But thatās about it. I wake up and I have a couple choices; watch TV, play on the computer, watch TV, play on the computerā¦ Ā you get the idea.Ā š
Iām not trying to be a Debbie downer I am a realist and quite honestly I hate being a realist. I never was until this piece of shit disease put me in this bed for the past five years. And before that put me in a wheelchair. Iām angry, just like I mentioned in a blog a couple of days ago. I donāt know how to get rid of that anger. I look around and I see a lot. I watch people complain about every day issues like not having enough time in the day to get their kids wherever they need to be or to grocery shop or clean their house. What I wouldnāt give to have those issues. My wish for people is too slow the fuck down and see the beauty around you because quite honestly it could be taken away from you at any moment. A dirty house is a beautiful thing because it means itās been lived in. And having to run around and take your kids everywhere isnāt a chore itās a blessing that you are able to do it. I know that I took so many things for granted and I wish I could go back and spend time on certain memories and open my eyes more and be more present. But you cannot go back so please I implore you, be present and if thereās something you want to do do it now. Because one day you may not be able to and I guarantee you will Ā have so much regret. And trust me, regret is paralyzing!
Iām not sure how much more of a fight I have left in me considering thereās nothing for me to fight with. There are no medications I can take so I just have to pray that my MS will be kind to me and not keep progressing. OK Iām kind of laughing at that last sentence because I am primary progressive so I know that it will keep progressing… Iām just asking it to slow down a little bit. LMAO Ā I really wish that MS were a person because I would beat the living hell out of it.
I think the worst part about being trapped in a bed is the loneliness. Nobody really wants to sit in your room with you whole are you lying in your bed, even though Iām funny as hell and quite enjoyable to be around. šĀ I really am! Ā If it werenāt for my beautiful doggies I honestly donāt know if I would still be here. I canāt expect my family Ā to constantly hang out with mom. They have their own lives. And my husband cannot spend every waking minute in here with me either. Everyone complains that my room is so cluttered and I really should throw things away. I donāt think they understand that this room is my whole life. What they see has junk and clutter are things that make me smile. Stupid things like my living dead dolls or my Lucy collection, my lava lamp, etc. Things that to someone else wouldnāt mean anything but to me they mean everything because they are all that I have! š¤
So please, for me, do me a favor and instead of making resolutions just make a promise to yourself to be present for every moment that comes your way. It could quite possibly change your life.
Have courage and be kindā¦
I canāt help it, I love that movie and that part of the movie. One of my favorite movie lines! #MrDeeds
My blog title has nothing to do with how Iām feeling though. Living with so much uncertainty in life sucks! Ā Iām always waiting for that other proverbial Ā shoe to drop. Ā I ask myself every day why do I even bother getting up in the morning err waking up because I donāt really get up at all. š¤
Most people have something to look forward to they can make future plans. I donāt have that option. I have no way to a slow or stop my progression of my MS so I really do wonder why I bother. Ā But, I will wake up every morning and lie this bed and figure out a way to get through each day lying in this bed. I think I need to invest in a good mattress LMAO but that wonāt happen until pigs fly out of my ass. šš¤£ Good mattresses are too fucking expensive. What a rip off.
That is all for nowā¦ I know youāre happy about that. Remember, have courage and be kind!
What do you do when there is nothing for your type of illness? Yes there is a medication now for primary progressive, Ocrevus, but is it really for us. Most of the studies I see have been done on people with relapsing remitting or secondary progressive. They already had medications. LOL what do you do when thereās nothing for you? Itās too dangerous for me to take any of the DMD medications. So how do you live your life knowing nothing, and letās face it, no one can help you. How do you fight when there are no tools to help you fight? The only way to slow or stop the progression of multiple sclerosis, any type, is to be on one of the disease modifying drugs. So, please, tell me how do I fight? There are people out there that wonāt take those medications because they feel the side effects are too dangerous. I would give my right arm to be on one because I can tell you MS will fuck you up a lot more than any of the side effects from the medications. MS is always working in the background and I donāt care how great your diet is or that you exercise 24 hours a day, š that will not slow or stop the progression of multiple sclerosis! So if you are not on one of those medications, Iām so sorry, but you are a special kind of stupid!
I really donāt mean to sound like a bitch, but I have nothing to help me and it angers me. How do you go on with your life knowing that you Ā can do absolutely nothing to help yourself. Yes I can watch what I eat and shimmey in my bed to keep movement going but thatās not slowing or stopping my progression. I am so fucking angry. I hate the fucking holidays because I cannot physically do anything for anybody not even myself. I donāt know if people really grasp the concept of being bedridden. Someone told me they were bedridden but that they could get in their wheelchair and cruise around whenever they needed to, that they could still transfer and things on their own.Ā š¤Æ UMMM Ā then youāre not fucking bedridden if you can get up all by yourself and get in n out of your wheelchair on your own. Ā What the actual fuck! Iām so glad I wasnāt near that person because I wouldāve seriously opened up a can of whoop ass on them. LMAO when youāre bedridden you canāt get up out of your bed whenever you feel like it. Then you wouldnāt be bedridden! DUH I cannot even sit up on my own. I can’t even roll over on my own. I am stuck lying on my back for however long I stay in this universe. Itās a whole production getting me dressed and out of my bed and that is probably why I donāt do it very often. And itās very painful… so there you have it.
Yes Iām angry!!
And every now and then you hear of a new celebrity just diagnosed with multiple sclerosis and they make it sound like they are some sort of martyr. For any chronic illness money talks. Granted it sucks that they are also struggling with this illness but they are able to get the resources that the majority of us sorely need but cannot afford. Ā I would love to have someone at my home helping me every day. Then I could get out of my bed and I could maybe maybe one day get better. I donāt mean get rid of the MS but physically get stronger and mentally having someone to help me could change my life. But unfortunately the majority of us cannot afford Caregivers nor can we afford to handicap accessorize our homes. Ā So while I feel sad for the celebrity, I would trade places with them in a heartbeat. I donāt even know where Iām going with this blog today. I can just feel that Iām not in a good place so I just needed to get shit out. As always Iāll be OK but sometimes I wonder how Iām going to be OK.
Have courageā¦ And be kind
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
