Physically and Emotionally Drained

I am tired.

I am emotionally drained. 

My body is physically exhausted. 

It has been a while since I have done a blog post.  I have been going through personal hell.  

I was meant to start new medication on June 14th after my MMR boosters but... My low blood pressure started to rear it's ugly head and I ended up wearing a 24hr BP Monitor. 

We learnt my low blood pressure is low.  It's lower than we excpected and the only time it raises is when I climb behind the wheel of my car.  So I need to stop driving my 2.5 XC60 and my seriously, I am awaiting a heart echo.  The heart echo needs to be done just to ensure I have no damage or peculiarities.  This need to be done before I can start the Mycophenolate as, you have guessed it the Mycophenolate has a side effect of low blood pressure.  Low blood pressure + low blood pressure = deadly combination. 

So after processing this and trying to stay positive about starting the Mycophenolate at a delayed date, I started a period of rhabdomyolysis, this is were my muscles break down and the CK blocks my kidneys causing my urine to turn dark.  I also had the return of a couple of old friends - my rash all over and the oedema in my legs, the nurse at work dipped my urine which raised some issues.  I then 2 days later in routine appt with my GP decided we would run some bloods and a have a fasting blood test..... 

You guessed it - diabetes back with vengeance. After 6 years on diabetic meds in my early 20s, I am now back on medication. 

So, now I need to stabilise my low blood pressure as well as control my blood glucose and live with this condition. 

STOP, the world cos I fucking want to get off. 

I cried.

I cried some more.

Honestly, I even went to some extrey dark places in my mind. I thought of a few ways to end it all, thus ending my pain and my suffering.  

Then my line blocked for the second time during our lock and clean session at home.  8.40pm on a Wednesday night with nobody to call for help, so we have another sleepless night wondering if this is curtains for the line.  Whole day at Kent & Canterbury getting it clear.  We TPA it and then we know it has from Thursday to Monday to flush through and break down any clots.  

Monday came and was a fucking nightmare.  2.30pm, I arrive on the ward for session 1/3 and the Line decided it would block and would not allow me to connect to plasma machine.  More TPA and 2 hours to waste at the hospital, fast approaching 5pm, I knew we would still be running treatment at 8.30pm. Blood pressure tanked, in bed tipped up having my wife give me a cup of tea through a straw.  9.45pm we get in the front door knowing I would need to go through another 2 afternoons.  

2nd session much the same, tanked blood pressure and overwhelming desire to vomit.  I have recently lost 6 kilos which also means an increase in volume.  

3rd session, blood pressure tanks and Pre Calcium shows that has tanked aswell so we need to push fluids to attempt to control blood pressure, push more calcium to stop heart attack while on machine.  

Hand on heart, worst 3 sessions I have ever had. 

I am now 10 days into diabetic meds and can clearly see I have lost weight in the last 10 days. 

Echo is scheduled for third week of July. I have telephone consultation on Monday with Consultant at Kings.  

Unfortunately, I have just had two days off work being sick.  

I feel at a crossroads but cannot currently take any of the forks.  

Being tired both emotionally and physically has also made me realise I am mentally tired.  I am stuck in a messy cycle and some of that is negative and I currently feel that each time something unravels, everything gets a little worse.  I am not melodramatic, I am just real.  

Everyone around me keeps telling me it will all be ok and I need to remain positive.  I am glad I can be honest and open with 3/4 people outside of my family who understand what it is like to have a long term condition.  One has Crohn's, one has Myasthenia Gravis and my 'twin' Daniel has duchenne.  The fourth person I can cry too is my wife, oh and Lindo but she doesn't understand.  

Intuitively, I didn’t think a rest was what I actually needed, I am not making light of mental illness but what I wanted was to drive the XC60 off of the white cliffs and end it all.  

So what is my cure for the escalating demise of my body?

What is my grand plan to beat my current frame of mind?

My self-image, has changed alot over the last few years.  Self image can be extremely vague and often is always changing, but I know that it has a big impact on my life.  I know that when I spend time talking to the 3/4 people about how I truly feel and just by listening to them about their day to day life, it helps me and I believe as a little group we help each other grow, I believe we benefit from each other’s positivity, and the boundaries of what we believe is possible.

I've spent a long time crying recently, I believe I am not coping, I cannot handle my body declining, my condition declining.  My emotions come and go, I am trying to remember they are just experiences and do not define me.  

I’m only human,  like everyone around me, I’m constantly forgetting and re-remembering things.  Sometimes it’s as simple as noticing the differences in my mood changes between morning and evening, and sometimes it’s more profound, such as doing something I never before thought possible.

Right now, for me even the mere act of reaching out to others, I know has saved my life.