Wednesday 15 January 2020

Me, myself and i

I'm laying in bed this evening with tears streaming down my face. 

I type various word combinations into google looking for help, something to take the suffering away, to find answers, to find a purpose.

You see living with chronic illness doesn't come with a manual on how to cope, how to grieve the loss of your past life, but the grief changes day to day as you realise somethings you could do a week ago you can no longer do.

What is my purpose I ask. What do i give to society. 

I realised today that doctors aren't going to cure me. I thought i had stopped hoping but as i sat crying in my gastro doctors office, i became apparent that this is probably it. 

Only i can help myself now, but how do i do that while feeling so unwell.

Maybe it would be better for my mental health to accept the here and now and stop searching, because when my mind is on the future, I'm missing the now.

One day i hope there will be medical psychologist to help people learn how to cope. But for now it's just me, myself and i.

Tuesday 14 January 2020

Long overdue update

Gosh I didn't realise how long it had been since I updated my blog. Last year was really tough mentally and physically but I'm still here. There were times I didn't think I would be or even wanted to be.

The end of last year things got abit better. I managed to get my new electric wheelchair which has made life alot easier. Just a recap for people that don't know me. I have ehlers danlos syndone, postural orthostatic tachycardia syndrome, gastroparesis, spinal issues and exhaustion which is beyond exhaustion. I've been a fulltime wheelchair user for nearly 8 years now. Wow it's gone so quick.

My electric wheelchair broke early last year and through people's generosity i managed to get a new chair. It has a tilt on it as i have blood pressure issues and it helps to tilt backwards. Also i have a riser on it so i can now reach my kitchen cupboards 😂 Massive Thankyou to everyone that has donated.


I didn't want to write to much in this post so I'll do another update soon. Hopefully not in 7 months time 😂 

Love Hayley x