Tag Archives: being seriously ill when young

Healthy Wealthy and Wise

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I might have the Wise part. Maybe. The other two have been in massive decline for the last decade or so.

I’ve been at my current workplace for just over 5 years. And it is a good place to work. Before that (when I first started this blog because I had free time), I was unemployed for nearly two years. We were just starting to get out of the financial hole from all that delay this last last summer… then Spot died. While the vet bills were very reasonable, we had already spent our ‘extra’ money on my bass guitar, flights to America and tickets to see Iron Maiden. And of course, then we got Lumi. He’s now on illness benefit and it doesn’t cover the bills, so back into the hole we go. At least we don’t ow tens of thousands to the hospital. 

The flights to the US never happened, as himself is too unwell to travel further than the stairs to the bedroom. Iron Maiden had to be done with himself in a wheelchair. He could stand and walk, but not for hours.

Best thing about a wheelchair at a concert? No queueing. Right in the door. Worst thing? Other concert goers who thought he was “brave” or “awesome” or “cute” when he got into the music and whipped his long hair around (like you should do, if you are a man with long-ass hair at a Maiden concert). One fucker actually patted him on the head like he was a dog. That twat is lucky I didn’t break his damn fingers.

We’ve learned a lot about how the world is not wheelchair accessible. I’m a strong woman, physically, but I got sore pushing him around on walkways that tilt to one side or the other. You wouldn’t even notice the cant on foot. Gravel? Forget it. A two inch curb? Not happening without him getting out of the chair first. Oh, that last one was learned at our local hospital. Of all places to be perfectly accessible to a chair, you would think a hospital would be top of the list, wouldn’t you? Nope. 

He has iGA necropothy, an immune disease that attacked his kidneys in October 2015 and left him with 30% kidney function. He will need a transplant one day, its incurable. The treatment to keep his function from continuing to decline was a very heavy doesage of steroids – which has lead to the rare (of course) side effect of pinching off the the blood supply to his left femoral head (the ball of the hip). So, the bone started to die. Literally. At first we thought his pain was gout. The iGA has done so much damage to his kidneys, which means they don’t filter correctly, and a buildup of ureic acid is gout. However, the pain went on too long in one single place. He was misdiagnosed twice by his GP with muscle or sciatic nerve issues. Once he was screaming and writhing in pain he was given morphine and sent for X-rays.

Which showed sweet fuck all, of course. Then an MRI after more waiting. Finally a diagnosis. I won’t go into how long it took to get his surgery, but the pain started March 15th and he had the surgery May 18th. So two months on addictive painkillers and nerve blockers, which of course is another worry for us. He is voluntarily weaning himself off of the painkillers this week. 

The surgery was core decompression. They drilled a bunch of holes into his femoral head in the hope that blood would start flowing to the bone again. No bone graft, no cartilage added, but between 7-20 holes were drilled. We don’t know how many. He was sent home the next day, about 26 hours after the surgery. We spent more time waiting in the hospital hoping to be seen over those two months than he actually spent in recovery.

He was handed a pair of crutches. Neither of us has ever had to use crutches, and don’t have a clue how to use them properly. He wasn’t given much education on using them, either. YouTube was more help. Thanks to the Aussie lady who helped us figure out stairs!

He’s put on a ton of weight due to the steroids, which he is still on, and of course that makes moving around on crutches even harder. He can’t put any weight at all on his left leg for six weeks (down to four now). His right leg and knee are sore, along with his arms, just from the amount of moving around the house he can do. 

I could talk about the issues he has just peeing, or having a shit. I’ll leave it at this – it is incredibly complicated, and I’m so very grateful that I have access to the medical equipment to help him.

Showering is even more fun. If he didn’t have long hair, it would be a shorter process. I don’t care: I love his hair and I’ll take care of it for him when he cannot. It took an hour and a half tonight to get him bathed and dressed again. The hardest part is the compression stockings he has to wear to prevent blood clots. Let me tell ya, those bastards are tight! I stuck my arm in one to turn it rightside out and holy crap, it was even tight on my skinny wrist. Trying to get them on his legs is a job and a half. I feel a bit shit that I can’t do the bath more than once a week as it wears us both out. 

We had a scare last week, too. His crutch slipped and he fell on the stairs, landing on the bad leg for a moment. He had also fallen getting off the couch the day before. His left foot, the bad leg foot, was sore to touch. So I rang his GP and asked what we should be worried about regarding this new pain … it turned into ‘a thing.’ His uncle came and drove him to the GP, who sent him to A&E because he was worried that the metatarsals were fractured, and that there might be a blood clot in the left leg as the pulse was slow in that leg. I was already at work and spent most of the day in a panic, but it turned out the GP had panicked instead. He had soft tissue damage to the foot, and no clot.

I’m tired. The worst thing is that I have to give an injection of blood thinners into his belly every day. He is a bit needle-phobic so no chance he could do it himself. Sticking a half inch of pointy sharp metal into someone you love is incredibly hard. I nearly threw up the first two times I did it. I’m better now, two weeks on, but his stomach is a mess of bruises now. It hurts to see what I’ve done to him. I know it is for the good but fucking hell, it sucks that I’m okay with it now. It’s just another thing like emptying a urinal or replacing a bandage or getting him a glass of water so he can take his pills.

Neither of us is happy with this version of life right now. He’s only 44. The world feels upside down and inside out, and not quite real. 

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