I wish I can take you on a daily journey of my life. But then again it will be all too similar so it will be bit boring…
Monday 05.02.18 I came home from work at 14h45 and went to lay down on my bed. I got up 18h15 to eat a slice of bread and then I got up this morning 06.02.18 Tuesday 06h00 to get ready for work.
This is happening day after day after day. This is not abnormal for me. I feel so sick and tired that I cant get myself out of bed. I sleep like its night time and when night time comes I sleep again…
It is a fatigue that I can’t begin to explain. I woke up this morning at 06h00 but I only got out of bed at 07h22. I am tired, I feel like I never slept, and I will keep on snoozing my alarm until I know that I am going to be very late for work. I literally drag my feet to the bathroom and back. I sit from the one side of the bed to the other side whilst getting ready for work. When I’m done dressing I am soaking wet because I sweat so much and I’m dead tired. If I don’t sit and dress I lay down on my bed and dress.
I would like to try and explain to you how I feel but I know that my words won’t do justice. My head feels weird like im here but im not here, I don’t drink but I feel drunk. I am tired and cant wake up, not even my daughters alarm wakes me up. I am tired from my finger tips to my toes. Every single action or movement takes all the strength I have to complete it. It is not that I don’t want to talk, I can’t talk I am saving my energy for the task at hand and that is getting dressed. In between dressing I will use ointments and sprays to reduce the pain in my knees and in my heels. It’s stiff and painful which makes any movement excruciating.
Most mornings I don’t care how I look and if I had the same clothes on earlier the week. If its clean and presentable I will wear it again. When it comes to my hair I want to wear a head scarf, I just don’t want to go there, so in the end I do what I think I need to do and move on. My hair dryer falls every single day, the grip in my hand is less to nothing, I can’t hold things or I am in such a hurry to reach my bed that I forget to look where I am going.
For years and years I thought I wasn’t a morning person, but I am actually a morning person, when I am well rested and not tired I am a totally different person. I want to be up and out doing things.
By the time I reach my front door I am sweating like a pig. I can’t wait to get into the car and drive so that I can just enjoy the wind. The ride to work and back home is usually the same. I just want to sit there with the steering wheel in my hand, hands on my thighs, no changing of gears, no driving at all. I am dead dead tired, I don’t know how to begin to describe it to you, but my limbs my everything is tired.
Can you imagine holding on to every single thing, the chair, trolley, desk, walls, pillars, cars, etc. the whole time I just want support, I can’t do it on my own.
Yesterday I cancelled my weekly muscle and strength building session because I couldn’t get out of bed. I know I have to go, I need to be there but I can’t and it makes me sad every single time I have to cancel my plans and disappoint people.
When I am tired like today, I don’t have the strength to put my RIGHT face on. Today my ears ache and zings, my head hurts, my body is sore and tender, I can’t think straight… today is a continuation of yesterday but just ten times worst.
A lot of times when I sleep from one day to the other I don’t shower, the thought of makeup in the mornings are dismissed and doing my hair only works because my hair takes quick to get sorted. I stopped cooking 2 years ago due to the effects of my Oedema tablets, but now I’ve stopped taking them completely in the afternoons because I just feel too sick after work, I cant cook feeling like this, ive seen all the nonsense I catch on when im not well and I try to do something.
I feel heavy, I feel swollen, it feels like someone deflated me while I was sleeping, or someone put big rocks in my limbs so that I can’t function, I feel weighed down and can’t think clearly, my brain is fuzzy and my legs feel clumsy.
It feels like im having a very bad flu whilst being very drunk and oh yes I’ve got jetlag x 10! Can you imagine or try to imagine my fatigue… my disorientation, my struggle and my fight within… its HORRENDOUS!
I just don’t have energy, someone sucked out all of my energy that is why I am waking up tired in the mornings. My legs feel like they weigh a few tons, same with my arms and my head. My muscles feel weak and gravity is my BFF. I feel like Superman with his kryptonite, but I don’t know what my kryptonite…is I don’t know what’s my trigger, they say stress and obviously the Lupus disease, but hey, can you be more specific because my life is going up in shambles here…
I am just exhausted to the max. I made a stupid promise to myself that I will never ever use the sickbay at work and today I asked for the sick bay key… never went to collect it but it was soooo close…
On days like these I skip some of my meds, I just can’t deal with more tiredness and still maintain my sanity. That foggy dreamlike feeling will be ten times worst if I don’t skip some meds…
A lot of times I find myself telling patients and people that they need a break, they need to go and recharge but in my life I don’t have that… im always on charge but stays flat…I get to feel like a dirty washed out rag all the times, I get to feel like I’ve been hit by a truck the whole time…
I am angry, im outraged and I am still tired. I also have a family to look after. I have a university student son who couldn’t wait to get back to his dorm because it was so boring at home. If I wasn’t sick I was always in bed and when I was ok there wasn’t money… do we ever win?… will I ever forget the sadness in their eyes when they look at me when they realise there’s no point in asking or when the answer is “no”?
I am not the person that I use to be, I am not the mother that I should be, I am just here… and it’s not fair, why can’t they find a cure for Lupus?
So, when you cant imagine how your life would be like living like this, you are most welcome to join our fight to find a cure for Lupus…
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