I spent most of yesterday afternoon, making my Psyllium pancakes. Adam hadn’t been happy about me making them when he was out, he wanted me to wait until he was here today to help if I needed him. It took some convincing, but I managed to get him to accept that I was perfectly capable of just stopping and lying down when I needed to. He finds it hard to let me do anything by myself, he for some reason is always concerned that something terrible will happen and he won’t be here to help me. Actually it’s not for “some reason”, it’s because he cares and loves me and doesn’t want anything bad to happen to me. I do understand that, but it’s hard sometimes just accepting that and just to let him help me more than he does, simply for his peace of mind. Living this life is often a balancing act, between what I believe is possible and what Adam believes is impossible. I guess every couple who is in our situation has the same issues, the same desires and the same problems. I often think that being on my side of the scales is the easier one. I may be the one in pain, unable to do most things and easily tired, but I know all that and it is me that feels all of that. He can’t, he has to guess and assume then just watch and worry. If that wasn’t bad enough the worry only grows when he isn’t actually here to do the watching.
He was right, but I knew that before I even started to make the pancakes. It’s a long slow job and I am not up to doing it all in one go. Once I had made the batter, I went to bed for an hour while the yeast did it job and turned the solid lump that Psyllium forms, into a light fluffy substance that is easy to spoon and stretch into pancake forms in the frying pan. After an hours cooking, I was only half way through the quantity I had made and I was once again shattered. One of the beauties of this stuff is that it will keep for several hours, just cover and take a break, it will be fine. By actually just taking my time and doing it bit by bit, I got the job done without collapsing, falling or any of the other things I knew was running around in his head. This morning, I am paying the price. My pain levels are high and I am tired. Despite doing everything I needed in the kitchen while sitting on my perching stool, my legs and ankles are killing me. I am not the slightest bit surprised by any of it and I am sure he knew this would happen as well. I am sure that many who read this who aren’t ill will find my determination to put myself through something that would cause so many issues, as more than odd.
On the surface, I can see that. In fact, if Adam and I were in the opposite position, I would have argued it to the last minute that he shouldn’t do it. Adam knows that doesn’t work with me, argue with me and all I do is get angry and more determined that I will do what I want. He knows it as well as most chronically ill people do, our independence is incredibly important, as important as breathing. If there is something, anything that I can do for myself, I want to do it. The price I pay for that is just something that I accept. I accept it as I know that whatever the task is, I will have the satisfaction that I have done something by myself. My independence is precious. So all I did was make some pancakes, not exactly a big deal, but I did it all by myself. OK, it was in stages and I am paying the price, but I was for a few glorious hours, doing something other than sitting on my backside in front of a computer.
It can be difficult when your partner becomes your carer. Right now we are still stepping up more and more what Adam does for me. Every few months his support is needed more and my independence becomes less. Not because I am getting lazy, but because this illness is stealing more and more of it, and more and more of me. I know that he is happy to do whatever is needed, but it’s painful for both of us as we are both witnessing my decline. Adam knows perfectly well that when I ask him to take on something new, it is because I have no other option. Which just makes it harder for both of us. I can’t step into his mind, but I can empathise and at times he has slipped and I have seen it. No matter how much he says he doesn’t mind, I know that on some levels, he really does. No one wants a million jobs dropped on them that will eat up their once spare time. I admit that I held onto many for longer than I should, just for that reason. But the point eventually comes when you have no choice left. It has been and still is a long painful process for both of us. Our roles have changed so dramatically from the ones we had when we married. I was the carer, the homemaker and the breadwinner. Now I am none of them and he is all of them and so much more. Everything changes when your brain will no longer cope with even the little things when you have to ask someone to be your proxy brain. That is one thing I can’t imagine, how it feels for him to be doing things like reading my mail and sorting out my meds because my brain can’t deal with it. I can fully empathise with him over all the physical stuff, but being someone’s physical replacement is one thing, being someone’s mental replacement is totally different.
Without a doubt, both of us are walking the same tightrope wire. It doesn’t matter if it is the physical help or the mental assistance, both have a huge psychological impact on both of us. Neither of us want to hurt the other, or even upset the other, but we both have very clear and often opposite views of what I am able to do. That is the tightrope, I have asked for and given him permission to take over so much of my life, but I still need my independence. It is a hard balance for both of us and I am very aware of it from both our sides. Once you are on that tightrope there is no way off, no way of turning it back into a nice wide road. Well, except if my brain checks out totally, but other than that, our future will always be a balancing act. We are always going to be protecting each other and doing and saying what we think is right, regardless what the other thinks. I know that if I find it odd having someone else having so much control over what I do. I also know that he must find it even odder to be so much in control of another person. We didn’t choose to be in this situation any more than I chose to be ill, but here we are, tiptoeing around and trying to do what is right. I fully admit that at times I let him have his way, even when I don’t actually agree with him, but sometimes we have to accept the help we don’t want, to get the help that we do. It avoids disagreements and loud unmistakable exasperation and it lets me demand my independence when I really want it.
All marriages are partnerships, ours though has become somewhat unbalanced. It’s hard to sit and take and take again when all you have ever been was happy to give. What I can give now is so little, yet somehow I still feel we are a partnership, that we still share and we still care for each other and we still feel like equals. It’s an odd one, though, as it’s not like any other partnership that I have ever come across before. None of us marries expecting to be in either of our positions. It is a thing that is out there in the dim and distant future, something that old age might bring your way, but not expected. For a marriage to last through chronic illness seems to be about a fifty-fifty chance. We have been together over 16 years and it’s now 14 since my diagnosis, we have had our ups and downs like all couples, but there is one thing that I believe is true. Our relationship has been made stronger by my illness. I once feared that it would be the end of us, that he would run in fright of what it all meant, but that was a long time ago and didn’t last long. I guess the truth is that there are no handbooks on how to make your marriage last through chronic illness any more than there is one for surviving that chronic illness itself or being a carer to the person who has it. We all write our own ones, as being individuals means we can’t write it for anyone else, all we can do is try and give hints.
We haven’t reached and are still a long way from the end of that tightrope. What I know of our future tells me that it will only get harder. I will on my bad days need him more and more to do even the basic things for me. On my good days, I know I will insist that I can do everything myself, despite the fact we both know I can’t. But that is life with a pigheaded ill person.There will be days when we will be exasperated with each other and days when we still totally adore each other, probably a few which are both. If there is a secret to making this life work I guess more than anything it is just holding onto the love you have for each other and to push through those bad times, as the good ones always come around. We both know that I will have to hand over more and more of my life into his control, that he will have to take on the few things that I still do. We equally know that I won’t let go of them without a fight and if independence comes down to just brushing my own hair, I will brush every single one of them alone and be happy.
I have found great happiness in both my marriage and even the situation I find myself in now and that has a great deal to do with my fussy, fussing and frustrating, but always adorable husband.
Please read my blog from 2 years ago – 09/08/2013 – Time to face it
I spent some of yesterday making decisions, not major ones really but ones that have actually made me feel that bit better in myself. I set to on the list of bookmarks that have been haunting……
I NEED A FAVOR: I WORKED FOR 40 YEARS. FOR THAT,I WAS REWARDED WITH,KIDS WHO DON’T CALL.ONE STILL LIVES HERE,ALONG WITH A MALE (THE GOVERNMENT TOLD US WE WERE MARRIED)).NOBODY ASKED ME.I RECEIVE ENOUGH MONEY,TO PAY THE BILLS FOR THE 3 OF US.I SIGN, THEY TAKE.IF I WANT SOMETHING,I ASK.BOTH WORK. THEY SPEND MONEY ON ANYTHING THEY WANT,WITHOUT ASKING ME.YESTERDAY I ASKED FOR A SMALL AMOUNT OF MY MONEY,TO MAKE ME FEEL JUST A TINY BIT BETTER. I WAS YELLED AT,LIED TO AND MADE TO FEEL LIKE A MOOCH.I WALKED THRU THE HOUSE, TO FIND CLOTHING AND EVEN A PIECE OF FURNITURE WITH THE PRICE TAGS STILL ON EVERYTHING .I’M SICK…NOT STUPID.I NEEDED A 10 DOLLAR CREAM TO HELP MY MUSCLES.I’M STILL WAITING. WHAT IS MY FUTURE LOOK LIKE,IF I’M BEING TREATED LIKE A MUSHROOM NOW???((MUSHROOMS ARE KEPT IN THE DARK AND FED A LITTLE FERTILIZER. IN TRUTH, MUSHROOMS ARE A FUNGUS . I AM NOT FUNGUS. YOUR POST TODAY MADE ME REALIZE THAT I HAVE TO HELP MYSELF, BEFORE I GET WORSE, BECAUSE I TRULY AM ALONE. THANK YOU FOR LETTING ME GET THIS OF MY CHEST.LOVE YOU BOTH…..NEVI
Nevi, what ever it takes you have to get out of there! I have been in an abusive relationship and it wears you down. I wouldn’t be surprised if you had your own freedom, you would probably feel so much better. Don’t you have a case worker who you could turn to for help? I know you don’t like the medical profession but they might just be the people who can give you the contacts needed to get the life you should have. You might not actually need to go anywhere, those taking from you, might be the ones who have to move out.
I don’t know your situation in detail and nothing about how things work in Canada. But I know well enough in this country, there are a string of charities which you could turn to, or even just the social services. It can’t be so drastically different over there, there has to be help for you, you just need to reach out for it.
THANKS FOR YOUR CONCERN.AT LEAST ONE PERSON CARES…LIKE YOU, PAMELA, I CAN’T LEAVE THE HOUSE OR TAKE A PHONE CALL, WITHOUT TRAUMA TO MY HEALTH..I’M LIVING IN A CATCH- 22 I CAUGHT MY DOCTOR, PRESCRIBING MEDS FOR HERSELF. I YELLED AND THREATENED HER AND THE PHARMACIST. ROB (MY HUSBAND$?), TOLD HER I WAS UNSTABLE.NOW SHE GETS THE MEDS ON HIS NAME; BUT IT’S STILL MY DRUG CARD.MY RESPONSIBILITY.THE SCAR DOWN MY CURVED SPINE..AND MORE,GET NO ATTENTION.I JUST DETERIORATE.ROB HAD A FEW STITCHES ON HIS FINGER AND GETS BETTER PAINKILLERS THAN I DO.A LAWYER I CAN’T AFFORD.MY ONLY OPTION: GO TO HOSPITAL,BE PLACED IN ASSISTED LIVING;(A ROOM WHERE A STRANGER COMES AND CHECKS ON YOU 2 TIMES A DAY) THEN THEY TAKE YOUR MONEY AND FORGET ABOUT YOU. THE ONLY DIFFERENCE? I CAN’T TAKE MY LITTLE DOG, IF I LEAVE…..THANK YOU FOR LISTENING. I AM WORKING ON SOMETHING THAT MAY HELP ME.FINGERS CROSSED,MY LAST CHANCE….SENDING LOVE, NEVI
I know the pain I have and I know it doesn’t come close to what you deal with. But after being very sick waiting for a liver transplant I lost the ability to do everything. I couldn’t even hold a pen and write my name. I typed with on finger. My husband even had to wipe me when he took me to the toilet. Bathe me. dress me. I spent several years. I was lucky to have someone in my life. But even now, 3 years after surgery, my old liver ruined my bones. I shrunk 2 1/2 inches. What I’m leading up to – is making myself do things, like cooking and washing dishes knowing it is going to put me in pain that will make my eyeballs roll into the back of my head. I love to cook and I’m not going to let anything take these things away. I write music. Sitting at my piano is very hard. But it won’t stop me no matter what. There are some things we have to do no matter what. I had a surgery 5 days ago that will hopefully help with that pain, after I heal from the surgery. One pain to help with another pain.
Everything seems to have a price to be paid in pain. I was sure I wasn’t the only one who simply had to do things regardless, independence, goals and achievements keep us alive. Although I have come across some who use their illness as an excuse to not do what they don’t want to.
I’ve seen people like. They have miserable lives and make everyone around them miserable. I’m alive when I shouldn’t be. I full everyday with the many things I do, working to push everything ahead. I don’t have enough time to do everything, even if I have barely left my bed. The world is a big place. You just have to reach and grab a piece – and you do – and that is a good thing!
I KNOW MANY, WHO USE THEIR ILLNESS AS AN EXCUSE.FOR NOT DOING F@#K ALL. I WOULD GIVE ANYTHING, TO BE ABLE TO DO,THE THINGS THAT PEOPLE TAKE FOR GRANTED. MY BIGGEST GOAL TODAY, IS TO TAKE MY DOG FOR A WALK.I WILL TRY,BUT I’LL PAY FOR IT FOR THE REST OF THE DAY.A MONTH AGO,I WAS OFFERED A JOB AS A MANAGER FOR AN UP AND COMING SINGER/MUSICIAN. I CAN’T EVEN TAKE A WALK,HOW CAN I TRAVEL ACROSS THE COUNTRY,PROMOTING THEIR MUSIC??
That’s hard. Wanting to do what you love and can’t. For ten years I had store in Key west where the cruise ships dock. I got too sick to work. I had stopped doing gigs after a few clubs there so this store. I had worked so hard for. I had close it up and walk away, come north and get on the transplant list. It was such a loss. But afterward I realized I had to start writing music again. It is who I am. In life, suffer what there is to suffer. Enjoy what there is to enjoy. Regard both as facts of life and keep going no matter what. Yes, to walk your dog will bring more pain so enjoy the walk to the fullest.
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I HOPE THAT YOU HEAL AND HAVE LESS PAIN. I KNOW HOW PAINFUL A PROCESS THAT IS.MY SURGERY TOOK 8 HOURS.ALL IT ACCOMPLISHED: MIGRAINES WENT AWAY AND I’M NOT IN A WHEELCHAIR YET. HOWEVER,I CAN ONLY WALK A FEW FEET, BEFORE I NEED MY CANE.I NEED MORE SURGERY ON MY SPINE (IT’S COLLAPSING).THIS TIME I AM OPTING OUT. I HOPE YOU NEVER FEEL THE WAY I DO AND THAT YOU RECOVER BETTER THAN EVER…….NEVI
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I used to suffer from migraines that sometimes didn’t let up for months. Right now they are better. So there is one positive for you – no headaches. Your problem sounds like my friend. She knows it will continue to progress. What cause my back problems was when I had cirrhosis with the old liver. it sucks out calcium. After the surgery bones started fracturing. My bone density was so bad it didn’t even register on the chart. I shrunk from 5’6 to 5’3. How could it not cause problems. I wouldn’t take the awful medications for osteoporosis but have been taking something else – raw calcium and strontium. There has already been some improvement and I should get another density test. it won’t fix what is already there but I want to stop more damage. Now, next week I start on the new HEP C drug – less side effects than interferon and better success rate. The treatment is 12 weeks. My friend also had a spinal cord stimulator put in that i just did. she came to see me yesterday. She loves it. She’s been able to get off every single medication. She was in a bad place when we met and was on a lot of drugs for pain. She was negative and the people around her didn’t like her. I said – Whoa – I don’t want any gossip. I’ll go get to know her and judge for myself. What I saw was a woman in pain. A year later I see a different woman. She took control of her life. The problems are there, but her attitude toward her problems and limitations have changed. Now she smiles. It’s really hard to feel negative when you smile.