Saturday, September 19, 2020

Two Years at Home

It was two years ago today that Mrs. F.G. brought me home from the hospital in London after 7 long months of first surviving and then recovering.  We have been given two more years of life together which is a huge gift compared to my dying 31 months ago!  At least in our brighter moments we both rejoice that we've had this time together.  In our darker moments we have to remember that every day I'm alive is a gift.

I won't disguise the fact that it's been tough.  Our lives are now so limited compared to what they were.  My lack of mobility severely constrains what I can actually do, and Mrs. F.G. is stuck in the chief caregiver role which is very demanding.  We don't travel as we used to, and I'm in constant pain.  We have to always watch out for the complications that come with paralysis.  My age certainly hasn't helped, though I would never wish this on a younger person.

One of my favourite pictures of me, out and about - 
this was heading out on a trail in Harrison Park last fall.

I would venture to say that we've succeeded in reaching a plateau in my recovery now.  I'm about as mobile as I'll ever be I think, though I intend to continue improving my strength.  And at least some parts of the care I need are going well.  And, given the paralysis I'm as healthy as I can be with no serious lung, skin, bowel or bladder issues though all these are seriously compromised.

Mrs. F.G. is amazing and I'm very lucky to have her.  Not only has she picked up all the work I used to do, she's also doing everything she used to do herself.  She's an expert on details, organizes everything, and does all the driving.  This morning she's outside with our garden helper working on more planting.  The patio was her idea, as is the plan to turn all the surrounding yard into garden.  Next summer this will make a big difference to my life, and be a continuing source of joy for her.

I do wish people would understand more of the difficulties a paraplegic faces, and the wide differences they experience.  People seem to see you in a wheelchair and think it's just a mobility limitation, solved by making places more wheelchair accessible.  Nothing could be further from the truth.  Let me list some of the other issues.

The pain! - our medical system can work miracles, and millions are invested in 'cures', but they've never come up with a good way to handle nerve pain.  This is my biggest daily frustration.

Health issues - the other bodily problems you're always watching out for, those skin, lung, bowel and bladder issues.  Hours are invested every day in preventative care.

Travel - for us travel, whether locally or further away, has been a big part of our life.  Trips give you something tp look forward to, and thereby transform your entire life.  It's very difficult in you're paralyzed!  

Photography - my photos are pale shadows of what they used to be, and I can’t get close to any of the things I’d like to take close-ups of.  Because the big camera is so heavy I'm mostly limited to my iphone.  Sometimes when I’m posting my blog I find it very frustrating.

Sidewalks - these are a bane of my existence. You have no idea how painful it is to drive over every little bump in a sidewalk and the big bumps are horrible!  I'm slowly getting brave enough to just drive on the road and to hell with it!

Guilt - I feel horribly guilty for Mrs. F. G. having to give up her former quilting life when she spent hours in her sewing studio almost every day. Sadly I am taking that away from her.

As you can imagine some days are tough. I have no sympathy whatsoever for people who complain about being kept at home during the pandemic!  That's just normal life year-round for a paraplegic!

On  the other hand, we have many of the 'learning how to care for me' things sorted out. We have good caregivers every morning and evening, we have good doctors, and we manage things in the house at least relatively well.

I have the feeling we are on the verge of next steps - a better social life, time for Maria to sew, and more challenging activities for me.  I hope we can get out and about a little more too.  We need to find ways to have a life, not merely survive.

So wish us luck as we head into our 3rd year here in Meaford.  And I'll be thinking of you too.




  


24 comments:

  1. You have come a long way, FG. With the progress you’ve made thus far, I cannot imagine you not finding that life.

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  2. I am sure that I cannot begin to imagine the difficulties involved, nor the pain, nor the sheer frustration. It is a great testament to the human spirit that you have been able to face adversity of this magnitude with fortitude and the sheer determination not to be vanquished by it totally. My admiration for you, and also for Maria who has stood by you this whole time, knows no bounds. May you both continue to find the inner strength to continue to love and support each other in a manner which should find each of us staggered by its depth and complexity. I salute you both.

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  3. I hear you. I took care of my late husband for his last nine years, the last three as a quadriplegic. He and I both knew well what it took to keep him well. When people used to say oh how well you look! little dud they know the daily hours required for even the simplest care and grooming. He felt guilt but I used to say shut up, you're worth it! And we did have a life, as you say.

    So I'm very hopeful for you both. I wish pain were not so present. But the building out of the patio, something to accomplish and then look forward to using, that was a great idea.

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  4. I understand so well, but to a much lesser degree. Hugh has constant pain, the result of sciatic nerve surgery done way too late, and that nerve has permanent damage. Constant pain, the leg has sensations he sometimes cannot describe, he now walks with a walker all the time, getting dressed is difficult, we do not go hiking, camping, ( I am TOO old for that now thankfully) or do big trips like we once did. But as our GP said, every morning you wake up is a good one. Your spirit and inner strength continue to show me how you have managed with so much to deal with, the bodily daily necessities that not many people even want to mention, Mrs F.G. and the sewing that takes a back seat, the two years is a huge milestone for you both. Fondest greetings from NZ where spring is easing into our days, lambs, bulbs, green grass, and budding trees.Even the odd bit of sewing as well.

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  5. I believe the nerve pain would be the hardest for me. I suffer from intermittent bouts of nerve pain and find it to be really hard to deal with. I can't think of anything else when it occurs. But I remember when this all happened two years ago, and I couldn't imagine that you would be able to adapt and refine your life so much. My admiration extends also to Maria, who makes it all possible.

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  6. I have to say that you are both heroes to me as you go about your daily adventures. You both seem to be always doing something or are off to find something! Some people would have just given up1 Bravo to you both.

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  7. Two years! I have learned so much of the hardships you face from reading your blog and also that you are an inspiration to others with your attitude and thankfulness. Mrs FG is an inspiration too in how she cares for you. God Bless you both!!

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  8. Wow, time flies, although I'm certain that for you some days seem interminable. Even though we helped care for H's mother after she had a stroke and was partially paralyzed, it's hard to really understand when you're only a caregiver. Indeed, you are fortunate to have Mrs. FG -- it must be extremely unpleasant to have a partner who isn't really a partner in life. Sounds like you're as lucky as I am in the ladies we share our lives with.

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  9. my husband age 80 he is my full time caregiver. 2 heart attacks and 2 strokes. now must either use a cane or walker. this is our last year of camping. 5 hours up and 5 hours home. he has to put ever thing in and then take ever thing out. now he must do most of the cooking. our 62th anniversary is sept.27th and my b.d. oct 2. but hey life is good.

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  10. I understand well as my late husband had a spinal cord injury. Keep looking forward!

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  11. I have been reading your blog since right before this happened. I think it is amazing what you can do and how you get around. I cared for my late husband for 11 years through COPD and kidney disease so I can understand some of what Maria is going through. My husband thanked me numerous times for caring for him, but I told him that I meant those words I said when I married him and I can tell you now that I would take care of him much longer if I could have him here with me again. He has been gone since May, 2019. So thank your wife, but also realize that she loves you so much and is probably very glad to do things for you. She came very close to losing you. I hope you can do more things in the future. Ann M

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  12. Congratulations and well done to both of you! Very best wishes for the coming winter.

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  13. My admiration and very good wishes are with you both.

    All the best Jan

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  14. You are a trooper as is Mrs FG...she is a trooper too...you are lucky to have her in your life...but you know that!
    It is good that you talk about the physical things that you confront everyday...you keep educating us.
    I once heard that Doctors have no idea how to prescribe some meds as they only take on Pharmacy Class. My advice is keep on asking what is new for nerve pain...what works for some does not work for everyone. Gabapentin is used often and some people say it does nothing. My husband has been through the mill with nerve pain control...accupuncture...injections ... the pain has a mind of it's own...so I understand and feel sorry for anyone with nerve pain...it is a constant battle.
    Take care and onward into a new year! :)

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  15. Yes, I think that is a great photo of you as well. That outdoor garden is a great idea for you to get out and be a part of it. I have never been close to experiencing the kinds of difficult things you have to deal with on a daily basis. Looking at your days I should never complain about mine. You and Maria have both been an absolute inspiration to everyone out here reading your posts. By the examples you have set you are both leaders in different ways. Despite the set-backs, turmoil, frustrations and anxieties, you both share a true love for each other that carries you both through the darkest days.

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  16. i admire you both as the struggle is real for both of you!! that is a great picture of you, you are two beautiful people who have inspired me to no end!!!

    and the outdoor garden will be awesome for both of you!!

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  17. Congratulations on still being here, two years later. A new life indeed, but a life with your love. I had a comment written but lost it as I wasn't connected to wifi. Duh! I'm sure Mrs. FG has no regrets about setting her quilting aside as YOU will always be her first choice. Neither Bill or I can fathom what you have had to and will have to go through and feel selfish to even complain about our choices and gripes sometimes. No idea. I'm so happy that Mrs. FG is so creative as you garden and patio areas will continue to give you both endless pleasure. As for the pain you endure on a daily, hourly basis, I sure wish there was some relief. A simple shoulder pain or shingles ache has us grumbling; although the latter is just a part of my existence now too. Minor stuff. You both know better than most exactly how far a sweet word, a loving kiss and a touch of the hand goes towards a happy life. That part you need no help with.
    Stay on the path, FG, you are our inspiration too. Hugs!

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  18. This is a very illuminating post. It helps many of us understand. Thank you for sharing this.

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  19. That's a great photo of you! I think I may understand your circumstance somewhat. I totally get the nerve pain issue, as it is what is keeping me up tonight. Congrats on 2 years! I am celebrating 8 weeks of recovering (not recovery). I hope the coming year continues to be positive for you and Maria.

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  20. I worked 15 years as a nursing assistant with Hospice, caring for people in their homes,some of them paralyzed like you, so I am very aware of the care complications involved. I continue to be amazed at how you have met so many challenges with a good spirit and determination. You are a wonderful inspiration to others, Furry.

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  21. So many can learn from your experience. I think I told you way back I cared for Mom at home in her condo for over two years after she lost the use of her legs following a freak blood clot in her spine. I had no idea about how to be her caregiver and would have loved to draw information from someone like you and Mrs. FG. Mom and I learned as time went by and got tips from part-time caregivers we hired to help us out. Mom was 93 when it happened but never gave up and always helped me with her positive attitude and love. - Margy

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