Post by nikkim58 on Aug 16, 2016 13:29:15 GMT -8
This is a rant and I don't expect anyone to either read or respond to it. One of those days and when I get to the bottom of the page, i will be able to get back to 'normal' again 
i'm just back from yet another Hosp pod appt. At the mo, not going to dermatology weekly coz Consultant on hols.
I'm feeling so down at the mo and it's becoming harder and harder to keep smiling and saying yes, everything's ok, when it's not.
My family have some idea of the pain and understand that I can feel down but they don't have an idea of what everything altogether feels like.
Following a Traumatic spinal injury and given wrong advice from union meant I missed out on a compensation claim. I eventually walked out of my job after fighting twice to get back, due to discrimination. Went to tribunal and won but head teacher didn't even get a slap on the wrist but I had inadvertently thrown away my career and couldn't get any type of job in teaching.
Following the initial accident, I wasn't believed and my notes stated that ..... I was having them on....nothing wrong with her....just wants compo etc... A year later got diagnosed with syringomyelia, cysts in spinal cord. But Cauda Equina had set in.
Been thro major spinal surgery 3 times and learnt to 'walk' again. Now as I get older, I am collecting other problems that go back to spinal injuries.
Type 2 Diabetes diagnosed after a week of being barely conscious, then a month later, week of being barely conscious and now critically ill with pneumonia and obstructive sleep apnoea.
Diet and media for diabetes, but being in w/chair, hard to find metabolic rate and number of carbs needed to get blood sugars in normal range.
Obstructive sleep apnoea more troublesome. Found that oxygen levels in my blood were around 75%, should be 98-100%. 95% is considered serious. Now have to sleep without moving head, partic face. Sleep with a very tight fitting oxygen mask and ventilator. Even that isn't good enough, now have to have oxygen as well as ventilator. More major problems when going anywhere overnight.
Last week, couldn't get mask to stay on or ventilator to work. Next morning, very confused and hard to rouse until 8pm that night!
I have woken and realised that I'm breathless and have to really make myself calm down and not panic. My tinitus is making this hard to write.
i have lost all cartilage in 1knee, will replace except have a very large and painful non-healing ulcer, 18mths old now. My knee bends backwards at an alarming rate and it forces off the splint. 3 months for appt to see about a new one!
The reason for the rant... Put in for disabled facilities grant. Been saving so hard as our windows are barely stopping in, the kitchen is falling apart and I've not been able to get out the house without help since Christmas. My husband may be out of a job in Feb and then on a pension. Because I worked all my life, I have to pay towards the alterations, thousands the OT said. Not got actual figures yet. Will have to use saved money towards the grant, won't be able to get a loan, husband 63, and if I was on the income related benefits, I would not have to pay anything and then today I saw in my notes that I have fluid around my heart and now in respiratory failure.
There, now I've said it, I feel so much better and will now get back on with my life
Thanks for the opportunity to write this down, coz no one has to read or respond to it.