Its so weird when its time to take my meds, another topic that I find hard to put into words.
I will be ok, note that I am saying “ok”, not fine, not well, but ok when I get to work. I will be chatting a bit, catching up and having coffee and most probably breakfast. The morning will be pretty standard, most mornings the same feelings except when im not feeling well.
Between 9-10h00 am I will take my meds and it will consists of the following:
It is 11h12 and ive been quiet since I took my meds. Its not nice when I go from ok to NOT OK at all. The first thing is the smell of certain meds, its nauseating!… then it’s the effect almost like poison being released into my body. Headache and a weird feeling of euphoria, I am walking on air. Then it’s the nausea and the nausea alone would be ok but the headache makes it 1000 fold worst. My head feels so heavy almost as if it is too big for my body.
Within 10-20 mins I will be up and down to the bathroom. The push and urge to urinate doesn’t allow you to continue with what I was busy with, it doesn’t allow a conversation to be finished, it doesn’t allow me to linger nor postpone, I just have to go! I have found that if I take a little bit too long I have diarrhoea, so as far as possible I try to prevent it, but its inevitable, because I cant be part of a full conversation, I end up missing so much because of the in and out…
The first 2 hours is physically and mentally draining. It ends up being more tiring than working extra hard. It leaves me nauseas for so much longer; it leaves me with a dry mouth and just an overall weird feeling, not a nice weird though.
Its 13:09 and I am going to the bathroom less and less. I had an apple and some water in between just to stay hydrated, it doesn’t help with the nausea and the headache or dry mouth but in my mind I am staying hydrated.
Round about this time I am tired and need my bed. Because I am tired things will take longer and I will be so much slower than when I started. I will lose my voice, I will feel like a deflated balloon and the only thing is how fast I can get home so that I can lie down. My headache is still here and the nausea has been replaced with fatigue. I am not in conversations and I am not trying to do work where I might make mistakes that can cost me my job.
In less than an hour I will be on my way home and that drive will be something I won’t remember, I don’t know how I got home I don’t notice things on the road, I don’t recall seeing along the way, nothing. I am just too tired to focus, to notice or to even care. All I want to do is get home. You wont believe how many times I contemplated puling over and just taking a nap. If it wasn’t so dangerous to do it I would have…
As we always seem to make time to share the negative I am working on sharing the positive as well. Not because I don’t like sharing it, but i tend to forget and I am so relieved that the battle is won so i start planning to continue to fight the war. So it’s not deliberate it’s just how things plan out all the time. So my new year’s wish is to make time to share my positives. I must also say that when I am having a good day theres so much things to catch up on, house chores, kids, work, etc… not making excuses.
I got the news on Monday but had to deal with a sick child hugging the toilet pot … and Tuesday it was my time to be so sick that I hugged the toilet pot, it was just too horrible and today im better and Taryn is better so I can share.
I am super-duper happy to share with you that I won my Sanlam appeal. As you recall Sanlam declined my partial disability claim and said that they are not even going to pay for the Occupational Therapist reports that I need in order to appeal. My employer came to the rescue and paid for me to go see the OT in order to get a report issued. Then we could appeal Sanlam’s decision and this week its confirmed. The 2 hours that I can’t work each day Sanlam will pay for. So for the next 12 months hopefully I can focus on my health.
It might be nothing in an able bodied person’s life but in mine its time that I need to rest. I cannot manage Lupus, Diabetes, Chronic kidney failure, osteoarthritis and and and… somethings got to give… the reduced working hours and treatment plan after chemo is doing the trick.
Having Lupus is NOT for the faint hearted but the winning streak here and there makes it ok, makes me fight harder…
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