I’ve been falling quite often lately I guess physically this past week or so I’ve been deteriorating. I was doing quite good, I made it to my fiancés birthday at her house and her family Christmas celebration to open gifts and be with my nieces who are beautiful by the way, such fun loving little children at ages one and three years old. I truly enjoyed watching them open their gifts with anticipation and getting just what they wanted. However depression has set in as the past week or so my physical weakness has only gotten worse and worse by a significant margin. My parents and fiancé are so afraid of me using the bathroom because my walker, wheelchair, basically all of my utilities to help walk do not fit in there so I fall often going in and out of that room and it’s all tile so that hurts quite badly.
In fact what spurred this article is me waking up to pain at 4AM EST this morning and then having to go to the bathroom. What’s the procedure for that? I have to wake someone up, luckily my fiancé doesn’t have to work tomorrow so I chose her since she’s on the recliner right next t the couch where I am sleeping. She got my wheelchair and let me push off of her shoulders to get myself stood up and turned around before collapsing into my wheelchair. I turned off the locks and off we went to the bathroom once arriving I engaged the locks and used her support to slowly rise again holding on tightly as we walked towards the toilet. Embarrassingly I can barely pull down my own shorts to go without falling but I managed this time and did my business. Afterwards is when all the trouble began and the shit really hit the fan even though it wasn’t the worst of all falls.
I got up off the toilet with my fiancés support holding onto her shoulders for dear life and then suddenly I feel a familiar weakness in my knees and ankles, my arms were giving out too being so weak yet using them so often to keep my grip. Suddenly all strength gave out in both knees and ankles then boom I went down hitting the tile floor and slamming my back against the door. I am now lying on ice packs after a heating pad for a little bit and typing away as I wait for the pain killers to kick in, if they do at all. The pain is definitely a 10/10 and I am once again holding back tears. This wasn’t my most dangerous or worst fall this week though. I legitimately thought I would die when I fell 2 days ago full force hitting my head on the side of our porcelain toilet. I was dizzy and having visual issues for a few hours after that fall and my father who has gout, poor guys has to pick me up with those knee problems, and he picked me up off the floor and rolled me back to my spot on the couch in our den. So I’ve spent more time than usual on the couch sitting and I am hating it, I just wish I could be more independent but right now I am completely dependent upon others for everything even a simple soda or to get my O2 or even medication. It just seems like no matter what tests I agree to, no matter how much pain I endure, no matter who I have connections with, and even if I am seeing some of the best doctors in the USA literally I am still lost with a failing treatment plan.
My point is I want to live and right now my vasculitis is giving a lot of indications it’s getting violent I need to stop it before it begins attacking my main organs. Last time I just lost a small portion of my bladder after urinating blood purely for 3 weeks and having a cystoscopy. I won’t let this illness take my life from me. I have enough already with the chronic migraines every day, cluster headaches, asthma, and small fiber neuropathy which is autoimmune based and was found via biopsy so we know that diagnosis is correct. I just ask that in the New Year my readers and followers support me as right now I’m going through one of the most painful and helpless periods of my life, I appreciate everyone who takes care of me but I want to recover. I want to be able to get my own drinks, own medication, and go to the bathroom, shower, and dress myself. It’s slightly embarrassing to me still that I’m 24 and my mother or father or fiancé still do all of that for me because I am incapable. The good side to all of this is I know for sure I picked the right woman as a fiancé, she’s wonderful I love Venus. Not only that but I have a damn good and caring family who like so many don’t accept my illnesses and don’t torment me about being lazy or anything humiliating like that.