Bottom of the well.

Many people talk about their depression as a black dog. Mine doesn’t feel like that. I feel like I’m at the bottom of a deep well, I can see the light, but every time I am about to climb out, I lose my hold and fall back. Sometimes I only fall a short …

The cheek of it!

Prepare yourselves for the biggest moan EVER! Mike is off at the hospital for his immunoglobulin infusion. He called me just as they were starting it off (after various tests and pre-meds that took 90 minutes!) to say they had started. He cheerily…

Not much change.

I seem to have depressed everyone with my last two posts. It wasn’t my intention, but not glossing over stuff has that effect. Mike is pretty much the same. The hospital have given us (him) a different antibiotic to try as the sputum sample he gave the…

Oh my goodness.

So yesterday we saw the “big” man himself (he isn’t actually big, in fact he might be better described as petite!) We hadn’t seen him since before our holiday, back in August, Mike’s appointments in the meantime had been with the CNS team or on one occ…

Apologies. x

Good morning world! I bet you all thought that I was gone for good, leaving you all on the edge of your seats about Mike. I’ve been to the blog several times, meaning to update you all, but I didn’t seem to be able to find the words and then as time pa…

Is there no end? Day 20

I had a call from Mike yesterday. His mouth is still so sore that eating anything solid is still impossible. They are still feeding him through the tube and he is still having those lovely milkshakes. So far so good.

Mike also told me that they have moved him out of intensive care back to the ward where he has his own room and his own bathroom. This would be good, except he realised that he can’t actually get out of bed, his leg muscles have wasted so badly that they will no longer take his weight. He can’t walk or stand and needs physiotherapy. Yet another hurdle, something else to stop us ever getting back to some sort of normality. 

Please don’t tell me it will all get better unless you can guarantee that he will be normal again by September. I’m so angry with the whole world right now. 😭😡

The verge of adulthood day 18

It’s nearly a week since I posted. I should have posted progress before but I couldn’t find the time or brain space. For those who don’t FB I will recap.Sunday +12: Mike went backwards. Monday +13 Mike stuck backwards. Very frustrated wi…

Passing the 11+

Today is +11. I am back from the hospital and can report that Mike was a bit brighter today. His blood pressure is still far too low, he has an infection that could still see him off and he still isn’t eating, but through the codeine cloud of nons…

Health Warning – A bit sad.

I have to warn you all that this is a rather sad post, so if you are feeling delicate please click off. I have warned you.Well if you insist.Mike 2004.Yesterday I arrived at the hospital to discover Mike had taken a real turn for the worse. His bl…

A week on day +8

Well a week has passed and nothing much has changed other than Mike’s blood numbers. They have taken the expected nosedive and have yet to make any improvement. Mike hasn’t been able to keep anything down for a week now. There seems to be little anyone can do, the hospital certainly don’t seem to be bothering to try. Mike is all alone in a room by himself, I have tried to get to see him most days since last Tuesday, but my stay is limited to just a few hours, the travelling to and from takes around four hours if I have to use public transport, and I can’t always get a dog sitter. I can’t get to see him today, my plans had to be changed at the last minute. It is all so frustrating.

It was around day 8 last time that Mike truly went downhill, I’m scared that when I visit tomorrow he’ll be even worse than he was yesterday. Well meaning people tell me not to worry, that they will be taking good care of him and can’t we Skype or talk on the phone. Mike is in no fit state to talk to anyone. He doesn’t open his eyes while I am there, I question if he even really knows I visit. 

There’s lots of cheer leading from people on the sidelines, telling me it will all be forgotten in a few weeks / months and Mike will soon be back to normal. They forget that our normal is dialysis five days a week and there is very little joy to be had in that. 

I’m not a quitter, so I’m not going to pack my bags and leave him to it, but I do find myself feeling unloved and unappreciated as a wife, I’m just the live in carer these days. 😢😭