12 Months…
Today sees the 12 month anniversary of my dates with Dai #dialysis shocking where the times goes but also the longest 12 months ever! If I’m really honest..the hardest 12 months that only 2 people really understand..Lee and myself.
Putting a few things down in print..maybe to share my experiences/thoughts with others going through it, maybe to help you understand if you’ve read this far… maybe therapeutic for me too.
In no particular order, just putting it all out there, so here goes…
12 months of…
…being poked and prodded, (blood tests, x-Rays, MRI scans, ultrasound scans, treadmill tests (me on a treadmill..don’t laugh!) for both Lee & myself in what has seemed like endless tests
…being afraid/dreading to go to #Dai every session
…the not knowing what will happen on the day
~ low blood pressure leading to me passing out
~ low blood sugar
~ headaches of migraine proportion
~ the needling..the pain..inability to find the fistula (to get the blood to even start dialysis)
~ having to have oxygen
~ being sick
All regular occurrences
..hearing the question ‘had a good day then?’…aaaargh, I never have a good day! It’s
not a jolly day out! One day I hope I won’t get asked that!
…the embarrassment of having to be wheeled out to the car because I can hardly
stand let alone walk out after my date
…explaining what’s going on and people just not interested..I shut up now and just don’t
bother..its a lonely planet sometimes
…fearing the transplant op and everything that’s involved with it…one being away from
home and Amber!..let alone the complications of it all for us both..yes, I’m a scaredy
pants, always have been, no doubt always will be!
…being so tired after my date that I can barely string a sentence together!
…having to sleep all afternoon after my date and dying for hours..not hearing the phone
Lee coming in the house!
…generally feeling quite rubbish every day.
It’s no fun.
I must say, no matter how much I hate kidney failure, dialysis and all to do with the..the Consultants, doctors, nurses and healthcare staff are fantastic and always greatly appreciated..thank you!
So, to finish of these 12 months…
…Lee has another test on the 27th..then should get his referral to Cardiff and his surgeon
…I’ve had my referral appointment..I’m off to meet my consultant/surgeon on 1st May in
Cardiff! Scared shiteless is an overstatement!
It certainly is all going in the best direction!
12 months shared with you all. Hope you understand a little bit better about what’s gone and going on! And why I’m such a grump quite a lot of the time! Hope I’m here in another 12 months to explain how great it is to have Lee’s kidney in me and giving me a second chance in life!
I couldn’t have described the last 12 months any better than you have Ann. I know exactly how you feel. Friends and family just don’t understand why we are the way we are and what we have to cope with daily. The amount of times I am asked by people “are you still doing dialysis?” They must think it is curable like cancer with treatment. I have given up trying to explain. We have just got to stay positive and hope that one day we will be back to our old selves
You’ve had a tough year Ann but hopefully the next few months will change your life for the better.
I know what you and Carol mean about people not understanding; just before I started dialysis, when I was very ill, I found out that my then HR manager was telling people there was nothing wrong with me! Once I was on dialysis so-called friends simply didn’t know how to handle it and disappeared from my life.
Sounds quite similar to my last 2 years Ann. I really hope what you are trying to make happen, happens, and the Transplant is a great success xxx
Hello
Ann I particularly can relate to the embarrassment about being wheeled to your car as I to have experienced that. It was following an occasion where my potassium had gone dangerously high a few years ago which made my legs unbelievably weak. I also had to use a walking stick for a few days. A very scary and horrible experience. The tiredness and not being able to string a sentence together also resonates as quite often my mind goes blank when I’m speaking, or I’m just not listening to what other people say because of pure exhaustion. A very good account of our daily struggles!