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
Seriously, some days I wonder why the hell I even bother waking up. No, I donāt mean the alternative. It just gets harder and harder it seems, to be trapped in this bed. Three months ago I was at the point where I didnāt care anymore. I kept my self medicated so I didnāt have to think about being in this prison. But then, I got help. My mind set changed and I saw that there was some hope left. Ā In a perfect world I wouldāve been able to remain there until I could actually get up on my own. And no, I donāt mean up being a dancing fool, just able to transfer myself from my bed to my wheelchair. Ā In this world, insurance would have none of that. š³
