“Happiness comes from... some curious adjustment to life.” ... Huge Walpole, Sr.
During the almost two years that we've been dealing with my honey's MM, we've waded through many "curious" adjustments. Prior to his diagnosis, I'm not sure if I'd ever heard of Multiple Myeloma - but I knew, just by the suffix 'oma', it was some type of cancer. I was definitely eager to learn more, I HAD to learn more. I HAD to know what he (we/were) was facing.
I became very inquisitive, not only of his doctors and nurses, but of others who were also dealing with this rare form of cancer. I was thankful for my computer skills and quickly learned that everything online shouldn't be construed as gospel. Being inquisitve, and prying, took me to great Myeloma websites, lists, blogs, and put me in touch with other patients and caregivers on this same journey.
I now see others, on the various Myeloma websites, that have the same curiosity and are just as inquisitve as I was. I encourage curiosity and inquisitiveness, and I advise that everyone keep in mind that changes, improvements, advancements are being made everyday. It's wonderful to read that MM may soon be thought of as a "Chronic Disease".
We've had to make many adjustments to both our lives, while on this journey. One begins to understand that the damage the Myeloma causes to the bones may mean that former activities, once enjoyed (like golf or working in his shop), may no longer be possible. Walking long distances can cause pain and may even be impossible. Fatigue is a big issue, while balance and stability are even more so. Just recently, while getting ready to FINALLY try and get our RV back out on-the-road, my honey had a terrible fall in our kitchen. It can only be best described as a "stumbling, staggering, trying to stop falling" type of fall. It started at the kitchen door and ended when his head slammed into a cabinet across the room, and his knees hit the hard tile of the floor. Thankfully, no broken bones - just bruised and swelling and off his feet, with legs elevated and with ice packs to try and alleviate the swelling. This sudden, unexpected, (certainly not needed) fall has caused a set back.
And just as we have had to make adjustments for him.....I've made them for myself. No longer do I feel that I can "jump in the car" and go somewhere. Even though he would probably be okay, I don't leave him alone for very long periods of time. That's an "adjustment" that I haven't been very successful in making for myself - that feeling that he shouldn't be alone. I'm working on that one!
As another caregiver/blogger wrote, life tends to become a balancing act. We begin to realize that life isn't what it once was. We do what we can, when we can. We make adjustments. We often make plans that are unable to be kept.
Things that my honey once did, or were his responsibility, have (in many cases) either become mine.....or often just don't get done. He isn't supposed to lift anything that weighs more than 10 lbs. That's quite an adjustment for him, and he doesn't always adhere to that restriction. After all, it isn't very "manly" to allow a woman to do the lifting of heavier stuff......like a case of bottled water, etc.
Accustomed to going wherever we wanted, whenever we wanted, is no longer possible. My honey is unable to ride long distances (we loved road trips), unable to sit for very long, unable to stand for very long, unable to walk very far ....... you get the picture. We've had to adjust for all these new inabilities.
As Sean Murray, another MM "victim" and blogger, wrote in his column in The Myeloma Beacon, we've had to "say goodbye" to life as we knew it.
We're learning to balance this life with the days, weeks, months, and hopefully years that my honey has left. It isn't easy to "say goodbye" to the life we knew and enjoyed. Probably the best adjustment has been to learn to enjoy the life we have. Treasure each and every day. Take nothing for granted.
Happiness absolutely is whatever curious adjustments you need to make....to your life (let's just hope YOUR life doesn't include MM!)
And just as we have had to make adjustments for him.....I've made them for myself. No longer do I feel that I can "jump in the car" and go somewhere. Even though he would probably be okay, I don't leave him alone for very long periods of time. That's an "adjustment" that I haven't been very successful in making for myself - that feeling that he shouldn't be alone. I'm working on that one!
As another caregiver/blogger wrote, life tends to become a balancing act. We begin to realize that life isn't what it once was. We do what we can, when we can. We make adjustments. We often make plans that are unable to be kept.Things that my honey once did, or were his responsibility, have (in many cases) either become mine.....or often just don't get done. He isn't supposed to lift anything that weighs more than 10 lbs. That's quite an adjustment for him, and he doesn't always adhere to that restriction. After all, it isn't very "manly" to allow a woman to do the lifting of heavier stuff......like a case of bottled water, etc.
Accustomed to going wherever we wanted, whenever we wanted, is no longer possible. My honey is unable to ride long distances (we loved road trips), unable to sit for very long, unable to stand for very long, unable to walk very far ....... you get the picture. We've had to adjust for all these new inabilities.
As Sean Murray, another MM "victim" and blogger, wrote in his column in The Myeloma Beacon, we've had to "say goodbye" to life as we knew it.
We're learning to balance this life with the days, weeks, months, and hopefully years that my honey has left. It isn't easy to "say goodbye" to the life we knew and enjoyed. Probably the best adjustment has been to learn to enjoy the life we have. Treasure each and every day. Take nothing for granted.
Happiness absolutely is whatever curious adjustments you need to make....to your life (let's just hope YOUR life doesn't include MM!)
Oh Sarah, it's not at all easy to get used to the "new normal" as one of the other MM people called it. My FL did one of those falls a few months back, ripping the towel rail off the bathroom wall and ending up flailing in the bath like an upturned beetle! Luckily I heard the crash and he hadn't locked the door and nothing was broken, but it does make me worry when I am out at work for 8 hours at a time - anything could happen! And yet we just have to keep on with the daily routine while we can, adjusting to new ways of managing the day-to-day. Getting used to him going to bed on his own at 9pm is my "new normal". Once I got over the lonely feeling, I realised I could get a lot of reading / sewing / knitting done while he sleeps. And then he's still there to snuggle up to - it's fine really! Just... different! You're doing great! :)
ReplyDeleteRoo: You still work and yet you do all the reading, sewing, knitting!! As well as taking care of your FL.....where do you find the energy??
DeleteMy honey is usually in bed by 7:30, so I need to take up some activity (other than the computer)!!
I love all your creations....how talented you are.
Hugs.....
dear sarah, what a wonderful post. you put perspective and encouragement forth in such a down-to-earth way. i can relate to both you and roo with the stupendous falls - i still see a series of ones that happened in slow motion, shuddering and sometimes muttering my horror aloud, but hugh shrugs them off and just goes on. in regards to finding activities to fill in with a lot of alone time, i am finally starting a knitting class next week. i love the new look of your site, and am so glad to hear from you; you are truly an inspiration to all us MM caregivers, doing a great job "making adjustments" with grace and your steadfast devotion to your honey. warm hugs, karen s.
ReplyDeleteKaren: How surprised I was when you mentioned the "new look of my site".....I wasn't aware the change I was looking at had been made public!! Looks like it needs some work.
DeleteYou, my sweet lady, are the one that is an inspiration....with all you have in your lives.
I HAVE to find something to occupy my time (other than dogs and laptop)!! Let me know how the knitting goes. I don't think my fingers could work, in concert, enough to do that. But can't wait to see what you're making.
Hugs.....
We are so grateful for the added years we're having with our relative with MM... and it would be a wonderful leap to know that this disease is more chronic than terminal, but recent announcements of those recently departed is a harsh reminder that not all are in the 'chronic' phase. We adjust our lives - and with baby twins yet! - to meet the limitations of the family member with MM, and after some sleepless nights it is a harsh reminder that what could be done as healthy adults at 25 takes a huge toll at 45 with MM as part of the equation. Still, we are blessed to have a respite from the crisis mode of several years ago, and are hopeful as more and more research is done that perhaps this new 'normal' can become an acceptable normal for years to come.
ReplyDeleteSandy: How blessed you are to have twin babies....and how busy!!
ReplyDeleteYou are so right - the recent deaths of MM "victims" is very sobering. Makes one realize how this disease is always in control.
Thanks for reading about our journey......
Hugs to you and yours....
I was on a 10 lb lifting limit for about 9 months before I graduated to 25 lbs. I am lucky, still working and still smoldering. You can read about my adventure at http://couldausedanotherday.com if you'd like.
ReplyDeleteAs a caregiver myself for a patient with aggressive MM cancer, I've had to adjust how I look at life too. It hasn't been easy, but the worst thing is to see how much my husband is suffering. If he could just get a break from the pain and nausea so that he could even go for a short car ride or a trip to the store. Most weeks the only outing he gets is to the treatment center for his blood tests and chemo.
ReplyDeleteI also hate to leave my husband alone. I've recently made the decision to not work outside of the home because I noticed he would suffer more depression when I was away. Plus I worried about him being alone anyway so I wasn't much good to any employers. I feel such peace now about making that decision. So far he hasn't had any falls but he is very unsteady on his feet so I worry about that constantly.
Thank you for sharing the positive way you are walking through this journey.
Sarah;
ReplyDeleteThanks for sharing the "new normal." I wish you both the best going forward. It is reasonable to expect that things will improve for your husband. I rebounded during my 2nd year with MM. In December, it will be five years. I'm not cured but I'm learning to manage the fatigue.