Archive for May, 2016

I Really Need to Blog About This

May 31, 2016

Possum is 10 years

Bandicoot is 7 years 10 months

Little Princess is 5 years 5 months

Today I was dismissed from hospital on a four month at-home, self-management trial. You would think that this was cause for jubilation, wouldn’t you? A mark of success? Instead I feel forsaken.

It has been a long road to get to this point. About a week before Christmas I started to feel ill. Then the headaches kicked in. Finally the ache in my back, that I had woken with each morning for a good six months, upped its game. By mid January I was nearly paralysed with back pain and spasm.

So started a five week stint in hospital. This has been followed by full day treatments at the hospital a couple of times a week ever since, interspersed with tests and specialist appointments.

The upshot? I have three bulging (including one slightly ruptured) discs in my lower back. (Permanent.) And I also have spinal inflammatory disease (Episodic, but degenerative.) There miscellaneous and still undiagnosed pain in my pelvis, which is often crippling and possibly the most debilitating part of all of this. And I have Chronic Pain.

Oh, I am in a much better state now than I was. I travelled too and from the hospital today by car, albeit hospital transport, as I am still unable to drive. I arrived at the rehab hospital (from the critical care hospital) in an ambulance, moved about on a gurney and a pat-slide. So yes, that is an improvement. I could even leave my crutches at home, once I had used them to get down the two stairs at the front of our house to get to the car. The hospital is single level with wide corridors and no Lego on the floor.

I should be happy.

But I feel like I have been dumped. Kicked to the curb.

The thing is, over the last three weeks, my condition has deteriorated. The assessments that were run on me today to determine my progress where on a different time frame. One compared me to six weeks ago. (I take one less step over 10m than I did six weeks ago, although the test was not run in the same way today as it has been in the past.) The other compared me to three months ago. My current deterioration cannot be taken into consideration.

I don’t really want to have to go the hospital for one or two days every week. It is hard on our whole family. But I had hoped that they would continue treating me until, say, I could go out from home on my own.

That day was supposed to come a long time ago.

I have thought about blogging this journey since I was an inmate – er, sorry, inpatient – back in January. However, I kept thinking this was a small blip, not an ongoing deal. I also have had so very little extra energy. I guess this is why I have not found a lot of stories of others to read. I will try and tell you more about this journey. I may even copy snippets from my diary or from letters I have sent to friends.

This is a story I need to share. Not all days are as bleak as today.