Easter Week was full moon week. I felt rough enough that week. I kept going though, and then when Easter was over and all the rush, excitement and stress had gone. I was hit with a ten tonne of bricks.
I began breaking out in rashes, my kidney’s started to struggle & I felt fatigued.
My weekly results came back with results we expected.
My white blood cell count was down to 2.7 from an already low 3.3 ( normal is 4-11)- the lowest they have ever been has been 2.6 and my neutrophils were down to 1.24 when they should be between 1.6-4. Neutrophils are the biggest family of white blood cells that fight infection. So my body has been using all its resources and left me exhausted.
My liver ATL was still in normal range which is good because at least my body is flushing out the toxins this could increase if the infections don’t pass and my body doesn’t bounce back.
We agreed to do check ups every 2 weeks because of my veins are getting tired and collapsing. With this blip however and with my rash refusing to shift I wanted to be re-tested next Monday.
Hopefully things will improve but I am feeling very fragile. Everything seems to be causing me issues at the moment and when life is like this you really do question WHY?!
You just want to wake up and for it all to go away. I don’t want these rashes scarring and being around over the summer months when we are expected and hopefully able to bare a little more skin in the better weather.
In times like these you feel most alone. You of course aren’t alone. Everyone is here with you, supporting you and offering buckets of love.
To the world you hold it together because you fear the judgements of not being the person they expect. It gets harder and harder. Yet I seem to fool many people.
You know deep down you can’t do the things you had on your mind. Your mind has you simply driving for food and thinking the crazy dreams like exploring Asia. It cuts you up. You don’t just deal with the physical pain but the emotional disappointment and realisations is another strain of pain. So many hard realities to get your head around and accept.
To love with no barriers, experience adventures without a second thought, to wake up pain free. The thoughts that roll through your mind 24/7.
You pray for change and improvements and try to think of ways to make things better.
In relationships, goal setting, careers and life. You don’t just sit and grieve. We have times when we need to cry, we really need a good cry. But that time makes up about 10 per cent, and is the time we use to ourselves - alone. The rest of the 90 per cent is the ‘kick ass’ mind set.
That kick ass state of mind can be amazing to keep focus and finding purpose in life but it can also means that people expect more of you. You are there, laughing, ‘looking well’ and seemingly untouched by pain. Their expectations make you put the extra effort in, to live up to their ideals. You must be well, you rock it every time? They don’t see the next day unable to move out of bed, throwing your body around hoping for the best, crying... crying, losing patience and feeling irritable and back in the doctors clinic with flare up symptoms.
They don’t realise that I put myself through hell, and cause myself 3 days of extra pain for one night of being the person I want to be, want to be remembered for and what people expect of me. I don’t just do it for the people that surround me. I do it for my own sanity. I, too want to feel life, see life, experience life. For myself, I deserve that. My desire for those pleasures outweigh a thousand times the extra pain I experience. I can’t admit my often ‘reckless’ decisions in person and retreat quickly if I begin struggling for I am so ashamed of losing that public ideal in person. My blog offers me a platform where I can be open, I can express my sadness and pain without seeing the disappointment and judgements on people’s faces. I know that seems a little cowardly but I am naturally a shy person and reaching this point has taken a lot for me. I’ve pushed myself in ways I didn’t think I ever would, so I may get over this fear and improve.
Pacing is difficult and a skill I am yet to master.
I am admittedly an all or nothing kind’a girl.
I am learning and adapting to accept only having one day at the weekend out rather than two, going later to parties and staying just for a few hours rather than 8 hours and so on.
Not always easy! Especially for a girl that easily gets bored and always wants to be proactive, not waste time. A girl that is that never late, on time is late. Having to adapt your own ideals and expectations of yourself is difficult.
School doesn’t teach you ANY of this.
I am lucky to have amazing friends and family who enjoy me and ask me to host events so I can feel most comfortable but see them all. ( they all have a fun time too - which is a massive bonus ). Their acceptance and them slowly learning my realities, like my blog allows me to be open and sometimes be little more fragile, real and open with them. That helps my overall health because, gosh. Simple events, often mean hours of preparation before the actual event even begins. They can help and support rather than me keeping my walls up and them not being able to see the true picture and understand.
The last few days I’ve felt very unwell. My digestion causing me massive upset too. We will see what Monday brings and although it frustrates me more than ever. The weekend will have to be paced. I won’t be relaxing all the time though - I would go insane... with pain.
We as always pray for better days but make the most of everyday.