Trust that my writing finds you well today.
Today I am just going to have a general chat about Lupus and what life with Lupus is like. If you ever wondered why my posts are so negative, why its not up building and life changing… here’s some reasons why… hopefully you will be able to see how hard I am actually trying to put a smile on my face. This is why my reply as to how I am will always be “fine” as I cannot begin to describe my real feelings, emotions and struggles. I am not in denial about it but it’s a heavy load to bear.
Because it’s a invisible disease there’s mixed feelings about life with Lupus. So I am going to give you a glimpse of my life and then you can decide. Every day I battle extreme fatigue. Today is no different, its 12h47 and ive been contemplating crawling under my desk to take a nap since 11h00. It comes out of the blue, like a thief and it sucks you to the point where picking up your hands is a chore… where engaging in a conversation is a struggle and not to mention working. I’ve been struggling with fatigue for the past few weeks and I am at the point where I am emotional. I haven’t cried but there’s forever tears in my eyes… I’m sad about my life. What I can tell you however is that the link to the extreme fatigue and the medication is super clear. As soon as I take my meds then all of these things happen, not usually in the same time frame but its on the cards. The same goes for daily diarrhoea, where the one moment I am fine and the next I ant get to the bathroom fast enough because something is terribly wrong.
Imagine being my age and having to have clean up sessions after you’ve used the bathroom, Imagine having to travel with a extra pair of underwear, imaging having to clean up your trousers because you messed on yourself. Imagine the humiliation and the pain of having to go through all of this and having to pretend that its normal and ok. So if you can look pass the nausea and the cramping, then you can deal with the rest of what’s happening, day in and day out.
I am experiencing terrible sensitive stomach problems, something as stupid as my morning coffee can have an extreme effect and send me to the bathroom and it will continue for the rest of the day. I know that I am lactose intolerant so I try to monitor my dairy intake as far as possible, but sometimes I am having yoghurt after I had a cheese sandwich and it can trigger everything all over. I cannot say it’s a humbling experience, I can’t say that I am learning anything from what I’m going through… its work in progress for me, as I haven’t accepted my life with Lupus yet.
I am typing as things pops up in my mind so please bear with me.
Yesterday morning my daughter told me that I am making her nervous in my sleep as my whole body shakes/twitch. She wanted to know why I am doing it, if im dreaming or something, so I asked her to show me what I am doing. In the end I just made it off as nothing and said I think im dreaming, its ok. But it stuck in my mind… I know that its not noting… something else I have to add to my list. It took a lot for her to tell me, she is always so weary about what she shares with me and I know it must have taken a lot from her to tell me her fears.
My eyesight is a mess. Due to meds like nevaquin my eyesight went from being able to watch tv without my specs to I don’t even go to the bathroom without my specs. I stand in my door and cars stop in the road and if I didn’t recognize the voice I wouldn’t have known who it was. I am so deaf I can’t hear myself. I think this is linked to the brain fog that I’m experiencing. I feel like a lip reader, if you speak without looking at me so that the sound can travel clearly I can’t hear what you are saying… what is that all about???
I am falling asleep with bone pain and I wake up in the middle of the night with bone pain… I am not taking anything for the pain, so I will see how long I can keep it up. I took 18 tablets this morning, its nauseating, I can’t think about taking more meds…
So with all the above said or typed, I can tell you how my life is going to end. Its going to end with me being lonely and alone. With my tummy trouble I don’t go out that much because I don’t know when this mess is going to hit me. When I take my water tablets I cant go out anyway, so now I have to add this erratic and ridiculous tummy issues and for both of them I must be indoors.
Daily, dry mouth, itching eyes, nausea, headache, bone pain,
When I leave work I basically head straight to bed. I have nothing to say, I don’t want to do anything, I just need my bed and to close my eyes for however long time. If it’s a Friday we will have cleaning scheduled for after work and school, but that will have to wait until I feel better. When I can’t I just can’t and there’s absolutely nothing I can do about it. Yes I try to force my way and try to do my chores or my to do list but always with not so nice consequences. My driving sucks when im not well, I drive to fast because I want to get home and my judging of speed and spaces are totally gone. But I have to try, otherwise I will be In bed for days on end, no life and definitely no living happening.
I save my brave face for my kids and for my work place but most days I just cant hide or get away from it…