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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30 responses »

  1. Holy shit, woman, the rubbish you two are putting up with… Down here on the other side of the globe I’m powerless to help, except to suggest you climb straight onto Facebook and take a look at setting up a Go Fund Me page to pay for some help caring for your man. Nursing aids, a part time carer, access to a pain specialist, a decent wheelchair that can cope with uneven ground, that stuff. Tell this story, and watch people give a damn, for a change.

    • Nooooo I couldn’t. We are able, just broke as hell. I do work for a healthcare company so if I want or think we need a scooter, etc, I can get one. It’s just eye opening seeing how little thought is given to those in a chair, even temporarily! He doesn’t want to be seen in town in a chair at all, and his mother…well. She is in denial. She sees a chair as death, pretty much, rather than a useful tool to help when needed.

      • Good grief, I’d rather be in a wheelchair than a mobility scooter, myself! I seriously urge you to think about the GFM idea, it would mean you could get some help around the place and pay for stuff you need, it’s not a matter of can you, but should you. And I think you should. And now I’ll shut up…

        • I wasn’t raised that way, and his family would die of shame if we tried it. It’s a small ass town, everyone knows everything. It’s hard enough when his family gives us cash or takes him to the Dr.

  2. Oh dear — I’m so sorry to hear this. All strength to you. I’m touched by the love you’re showing. Flowers. That’s all I think of to say. Flowers, and hope that you can get some rest where you can find the chance. Sending more love your way.

  3. You are a strong lady. It is harder on the caregiver than the one who needs the help. It is frustrating to be unable to do for yourself, but it is even more frustrating trying to keep up with everything when it all falls to one person. That person has to work, get supplies of food and stuff, take care of themselves, take care of the one who needs help… it just goes on. It is a grand love you two have that you are not tearing at each other over this. You have a grand spirit to see past the disability to the man you love. SIckness can affect not only the physical but the emotional as well so I am so glad you both went out to the concert. Being trapped at home sucks royally. I can see why your hubby is upset with his situation, he is young and active and having a disease that wacks your health and limits what you can do is scary, especially when you think of all that could go wrong in the future. You both are grand brave people and I respect you. I do have one suggestion. I can’t do crutches. So I use a walker. I have three. I have one I don’t use that has no wheels. I have one I use when I am like your husband and can’t put any weight on one leg and that has wheels in the front and no wheels in the back. That is the one I use now. I also have a four wheel one I use when I can use both legs and just need a little help with stability. I hope you will think about the two wheel walker, it really saves the body if you have trouble with crutches. If you need me, even just to talk, please text. I care so much. Best Wishes to all. Hugs

    • Thank you, Scottie. You are a good man. I can get him any of those, of course. I think the crutches, as hard as they are, make him feel as though this is temporary (and it is, please). A walker would feel more permanent.

  4. I know you don’t have any other choice but to hang in there,so I’ll simply say how sorry I am that all of this is happening and you both have to deal with it.
    You are both on my thoughts and prayers.
    The head-patting thing is strange. I was trying to understand it today, because a woman passed me in a hallway where I was chatting with another colleague and she patted me on the head and said hello as she walked past. She’s intelligent, kind, the same age and height as me. I don’t think she meant anything negative …but who pats another adult on the head like they’re a dog? Weird.
    I reconciled it to the “Sometimes-A-Person-Screws-Up Category.
    May healing and peace walk with you.

  5. So very sorry to hear the tales of woe. It does seem like a complicated life right now. If the hip heals and there’s more mobility, that would be a fine thing. Thinking of you all and hoping you get a spot of luck soon.

  6. Lord love a duck, who would have thought that you have been going through such a difficult time!! Especially since your husband is so young (including you). I agree with Barb, hang in there, take care of yourself, find some peace in your flowers and animals. I pray all things get better with time.

  7. Wow … that is heavy. A seriously badass situation. I feel for you.
    Don’t ever doubt that you are one helluva brave woman, and your man is fortunate to have you.
    Hang in there.

  8. You are really having such a horrible time. I hadn’t heard of this autoimmune disease before, but it really sounds like a tough deal. I hate it when the medication that is supposed to help makes things worse. It is so true when they say your health is your wealth. And I am right there with you when it comes to being a carer and you end up having to give those injections that leave your loved ones battered and bruised. Have you looked into the carers allowance? You may qualify. I am only down the road so if I can offer any assistance, picking up groceries, lifts to hospital, anything at all, I would be more than happy to help. You will need lots of strength to get you through this and I hope you find it.

    • Ah, thank you for the offer! It seems there isn’t much anyone can help with really – his one uncle took him to the doctor and the hospital last week as I was at work already. His mam is walking up and down the town getting prescriptions refilled. I could use a dog walker that the dog would come back too if she slipped her lead being scared of … everything.

      • Maybe you should see the dog walking as a way for you to get some fresh air and clear you head – not easy i am sure. There is a website my sister was walking about where I think people offer to bring dogs for walks / dog sit etc – I will see if I can find it for you.

        • She is afraid of me, sadly. I messed up when she was little and scared her, and she never forgot! I can’t seem to find the time, I’d rather sit and read to decompress than walk more as I’m on my feet all day at work.

  9. When it rains it pours. Topsy-turvey world.
    Glad you got to the concert. Maybe some people there weren’t used to seeing people in wheelchairs living life? Weird.
    I do hope eventually all wheel chairs will be the all terrain ones that crawl up and down stairs and ground or the motorized ones that allow the person to stand up and be at eye level and feel more normal. Bound to be expensive right now. No rental places there?
    We are seeing a lot of a new rolling transport assist for those with one bad leg: it’s like a 2 foot high bench/scooter on wheels with a tall steering bar – the good leg is straight and pushes while the injured leg/foot is bent at the knee in right angle (backwards). When people get tired they sit on them to rest. Wold something like that work? (images on Amazon under steerable knee/bench scooters or there’s a hands free crutch – not sure his knee is ok with either…) Crutches sound exhausting and dangerous.
    We do what we have to do for those we love. Do take some time for yourself and get enough rest.(I expect your next post will be about how you rigged a pulley to haul him up and down floors like a bale of hay…if I was there, I bet we would be hilariously inventing some elevator/pulley/chair gadget…and he’d refuse to even try it – showing good sense there.)
    Hugs to all and keeping you both in our thoughts and prayers. A mountain stream doesn’t bubble, giggle and toss light diamonds in the air without the rocks boulders obstructing the stream. Be the river…flow around what you can’t move out of the way and find the music of laughter

    • That was lovely, the river analogy. I’m good in a crisis, usually. It’s just getting wearing on both of us now.
      I work for a medical supplies company, and we do have those knee walkers! Made in Australia actually. But he can’t put weight on the hip bone so it’s not a goer. My place rents all the good equipment and would let me have it free – but we can’t fit an electric wheelchair in our car or in the house. Tiny Ireland!

      • I thought that might be an issue…maybe down the road. Not being mobile gets on your nerves. Better now with the internet/tv/phones than in early colonial times? You have to wonder how they managed decades ago when people had long term illnesses.
        I’ve read about the bone drilling to stimulate growth and circulation. Medical procedures are so intriguing – but not if it’s you/yours.
        Hmmm, not giving up on the hay bale pulley idea- ramps on stairways are just asking for trouble (snorts allowed here..hey it could be a Shark Tank idea!)
        Hang in there. πŸ™‚

  10. Oh, my heart goes out to you and your husband! What a huge tiring and frustrating time for the both of you. I just wish there was something I could do. But know this, although it seems trite my prayers are with both of you!!

    Love

  11. Oh this sucks. I am disgusted — but not surprised — to hear how half assed and inattentive the medical intervention was, and how much crap is involved in wheelchairing around. One of my clients with a rare neurovascular syndrome needs a chair intermittently because she can navigate on foot for short times or in low output situations, but definitely requires a chair for excursions or public events. And people are assholes about “but you seen able to walk around just fine” or even worse, treating her like the furniture or asking her to hold things when she’s in a queue. The head pat incident made me nearly spit.

    Walker does not sound like a bad idea actually just for a change from the stresses the crutches cause. I work on a lot of people recuperating hip surgery and just varying the pressure is like a vacation.

  12. Wow, I’m really sorry to hear all this. Both me and my ex partner have/had parents who had joint and organ damage at young ages, and it is tough. My ex’s mom knows all too well about how inaccessible the world is for wheelchairs. I really wish you the best, and healing and recovery. The world is already difficult without having to deal with all this. Will be thinking about you!

    • Thanks! It’s exhausting for sure. I’m not used to being the one who does everything! He did say he will cook dinner tonight, but I have to get him the pan, buy all the food, and clean up afterward. Simple things take four times longer than they should and trying to remember it all is draining.

  13. So much in this post brings back memories for me and I can understand some of what he is going though. Trying to pee in a full leg cast was a nightmare, crutches are a fucking curse, the only good thing for me was after my surgery I was able to weight bear. Actually the injections I didn’t find too back and after initially telling them there was no effing way I was going to be able to jab myself every day I gave in and tried it and stabbed myself stupid for about 6 weeks. The little stubby ones were great, the Dr’s surgery gave me long ones, they hurt like hell.

    There’s a whole process he’ll go through yet, the anaesthetic takes it’s toal and you’ll find he’ll get a bit own if he isn’t already, partly because of it and then the lack of mobility. Tell him he will come out the other side.

    I know it’s easy for me to say, but you need to look after you too, because if you keel over who’s going to wash his lovely hair 😦

    I so wish I could help, but if you need a recuperation beside a beach for a couple of days you know to come up north!

    • P.s – I got cast cover things for the shower out of the chemist, they leaked a little but by and large meant I was able to step into the shower. Check them out to see if they help. I was scared in the shower for a while because leg surgery plays with your balance.

      • Yes we sell those too, but won’t work for him. It’s just the incision that can’t get wet, and that is up on his hip. I’ve waterproof bandages for it. What we got (again from my lovely work) is a swivel shower seat. Sits in it facing out of the bath, I grab his legs and lift them into the tub and voila! Luckily the shower head is one of those detachable hose ones!

    • I’d like that! I love the water…
      He won’t be weight bearing for another 4 weeks so is mostly useless. I’m getting all kinds of fun stress reactions that I’m not telling him about πŸ˜‡
      Next is getting off the opiates. He is cutting them down slowly.

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