Wednesday, 9 October 2013

Damon: The Husband's Tale. Dysautonomia Awareness Month

Today's guest post is something a little different as it is from the perspective of a carer, Damon. Damon and his wife Zen, who has been diagnosed with POTS and generalised Dysautonomia, hail from The Land of The Long White Cloud aka New Zealand. Damon talks about what it is like to be the one standing next to the person they love who is traversing the complexity of illness. I love his last point and his evident love for his wife. Thank you so much for sharing, Damon.

(Damon and Zen on their wedding day with their little one.)

About four years ago it was very frustrating because doctors kept saying my wife's illness wasn't physical. I knew it was, because my wife (Zen) wasn't mentally ill. Her mental acuity was certainly not impaired. She was getting more and more exhausted just from walking, and she'd always been a big walker before that. She was in physical pain after walking, too.

(Damon and Zen, shortly before Zen became ill)

When the GP ordered blood tests, the results were screwy. They indicated thyroid problems, and her internal organs were struggling. The doctor settled on overactive thyroid. The thyroid went back to normal pretty fast, but Zen was sicker than ever. She was having horrible attacks where she went very pale and cold in her hands and feet, and shuddered a lot. She would writhe around quietly, and sometimes be gasping for breath. She would need to be cooled down with water and ice. I thought she was dying.

One day she took a strong tranquiliser because the doctor said she should see if it helped. She was on the couch totally out of it, but with all the same symptoms. Sweating, needing water tipped on her, having difficulty breathing. One day Zen was sitting talking to the doctor, and she had an attack. The doctor looked at her funny because she went all pale, and he told her to go over on the bed because he thought she was about to faint. Zen didn't want to go up on the bed because she said everything was spinning, so she sat on the floor and tipped water all over herself and ripped her top off because she felt so hot. At that point the GP seemed to realise something was very wrong. He sent my wife to a specialist who told her after the first appointment that she had POTS. I took her to the hospital for a tilt table test and they said it was the worst case of POTS they had seen.

(Zen and Damon shortly after they started going out)

I started having to take a lot of time off work to take Zen to doctors, and to look after our daughter more. I had to do all the things we used to do as a family, just with our daughter instead. Zen was in and out of hospital a lot.

It's four years on now. Zen has been diagnosed with generalized dysautonomia possibly brought on by a virus, but she has had symptoms all her life. Zen hasn't really gotten any better. The medication just keeps her out of hospital a bit, but she can't do most of the things she used to do. Some doctors act like her illness is nothing. Other doctors say her illness is awful, and it's very unfortunate there is no cure for her. None of the doctors seem to want to help.

Zen is always trying to do stuff around the house and I have to tell her to stop it and sit down because she starts banging into things and dropping things. Even though her body has given up, she hasn't. Zen always gets more sick the more things she does. I can see that she gets very frustrated. When I first met Zen she always wanted to go out on adventures. She was never happy to just stay at home. She used to sing a lot, and play the saxophone. We even said in our wedding vows that we would never stop climbing trees and singing in the branches together. I watched Zen go skydiving and doing so many crazy, fun things like skinny dipping at the beach.

These are the main things that have changed for me since my wife was afflicted with this condition:

I lost all my old friends.

It's harder to keep up with work. I gave up on my career aspirations and have kept the same job that has the flexibility I need to look after my wife and daughter.

Almost every time my daughter and I go out, Zen isn't with us anymore. I spend the whole time worrying about Zen at home alone, and checking my cellphone.
I feel a dread when I leave the house.

I have given up on hobbies.

I don't get to go on dates with Zen anymore. We used to have a lot of fun in the city.

I am now my wife's main caregiver. Every morning I refill her drink bottle, cook food and/bring it to her, empty the bed pan, bring my wife medication, and basically do whatever she needs doing.
When I get home in the evening, I have to start washing the dishes, clean up the kitchen, and cook the dinner straight away. I am often tired. Sometimes Zen needs me to stay up very late because she feels too sick.
(Making Zen's second dinner)

My wife and I have a good routine. After our daughter goes to bed, I make Zen's second dinner. She has to eat two dinners to keep her weight steady these days. We watch a show together. Then we listen to a comedy radio show and Zen usually falls asleep during it. I switch it off, empty the bed pan, turn off the lights and go to bed. We can't sleep in the same bed anymore because sometimes Zen got very weak muscles from me turning over in the bed, and it was horrible. A couple of years back, in the middle of the night I had to call the ambulance because she could hardly breathe when it happened.

(The nightly routine)

Some positives:

I have a closer relationship with my daughter because I do more things with her now than I would have otherwise.

We've caught up on a lot of TV shows that we didn't have time to watch before.

I have filled the master bedroom with my comics.

I decided to get Zen a cat because I know how therapeutic they are. We got the first one on my birthday last year. Since then I rescued another cat that was stuck in my car, and they are very entertaining. The cats love to sleep all over me.

Zen still manages to do things for the family. She sorts out the budget, pays all the bills, orders the groceries and organises the outings for me to take with our girl on the weekends.

What I would like people to know is that even if your partner becomes sick like this, their brain still works and it would be hurtful to them if you gave up when they don't have that option. It could have easily been you that got sick, and you would want your partner to stick by you. You can make a routine that works for your family. Collect small moments of happiness whenever you can.

******************************************


For those unfamiliar, a short explanation of Dysautonomia can be found here.

One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.

Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.

Don't forget to check out the other awesome guest posts:
1. Claire: The ups and downs on the journey to diagnosis.
2. Amity: Art from the heart.
3. Claire: Finding your personal treatment regime. A spoonful of this and a teaspoon of that.
4. Belinda: Coming out.

Love Damon's choice of song. Gorillaz On Melancholy Hill.

15 comments:

  1. tearing up, you are an amazing husband, and I'm so thankful for my husband who is just the same. "Collect small moments of happiness wherever you can" is just the best thing!

    ReplyDelete
  2. Damon, thanks so much for sharing. I love how much you love your wife. You guys are an amazing team and an inspiration to us all. :-)
    Rachel Cox

    ReplyDelete
  3. Damon, thank you for being a hero for your wife... I don't know how I would have lived through these last years without my husband's support. He kept me going when I wanted to give up, and he can still make me smile even on my worst days -- even if the smile is weak and crooked...

    ReplyDelete
  4. I was pretty much an invalid from POTS at one time but I can live a mostly normal life now with good strategies and the right med. My prayer is that Zen will get better too someday. Bless you Damon for your loving support of your wife.

    ReplyDelete
  5. Thanks for posting - as a fellow husband/carer it's made me realize that it could be a lot worse - my wife can walk around the house for a few minutes at a time at least.

    I can definitely empathize with losing touch with friends and hobbies - my life also now is a continuous cycle of work/housework/kids.

    ReplyDelete
  6. What a lovely man. Being 'the patient' makes me feel very guilty about all the stress I cause my husband because of the things he has lost, like Damon his 'friends' are no longer part of the scene, (but that seems par for the course if you ask a lot of Dys patients) so the carer has lost a lot of their support too, and it makes me very angry that human beings can treat each other this way, almost as if you are no use as a friend anymore because you might want them to do something to help you!
    Sorry, will stop the rant. Damon you are doing a fantastic job, and I know strangers 'pats on the back' won't change your life, but from personal experience I can say that knowing there are some 'ether friends' who care and can empathise with all the moans, whinges and worries that others turn a deaf ear to is a great support, like your wife, I am very lucky as I too have a wonderful husband, who married me after my diagnosis, knowing what he was in for, so 'You Rock' Damon, Mr Grumpy and of course my Mr Patient!

    ReplyDelete
  7. beautiful post. it's sad, but important to see how dysautonomia affects many people. damon is such a wonderful, caring man. i'm very glad zen has someone so special to help her.

    ReplyDelete
  8. Thanks for sharing this. I laughed at your comment about the comics. May I ask, how do the two of you deal with being frustrated with each other? I mean, Zen can'just walk out on you and leave you alone when she's had it with something you do or say, can she? I don't have dysautonomia but I have other conditions that make it impossible for me to do lots of things on my own. This creates somewhat of a difficult power dynamic where, when my husband is frustrated with me, he leaves me alone for a bit, while I can't do the same when frustrated with him. You say the brains of people with dysautonomia (and other illnesses) are fine, and even if they aren't, it's not appropriate to treat an adult like they're your child even if you're their carer. You make a good point of sticking with your wife in spite of her illness, but that is what made me wonder.

    ReplyDelete
  9. Thank you, Damon. It's great to hear from the spouse like this. I thank you for caring for one of 'ours' and I thank you for sharing like this.

    ReplyDelete
  10. Wow. Wow wow wow wow. Just... wow. I don't have dysautonomia (that we know of), but I am pretty damn sick. We had an MS scare a couple of months ago, and we were facing the reality that our lives may very well look like this at some point. It was eye opening to have the discussions that we did, and it is very eye opening to see things from the point of view of the spouse. We talk about how the patient loses so much, and their life changes so drastically, but so does the significant other's.

    It made me sad to read that you two can no longer sleep in the same bed. Being able to cuddle up to my honey on days when I can is something that helps keep me going. But then, he also doesn't need another bedroom to put up his comics and dragons, as he's already got a computer room to himself for that. :)

    ReplyDelete
  11. Your article made me cry. My twin sister suffers from pots, disautomnia, and cyclical vomiting. Her husband met her when she was ill. Your wife is lucky to have you bit is very hard on healthy love ones to watch their pain and struggles. As a twin, I feel awful and feel it should have been me and not her. Thank you for your post.

    ReplyDelete
  12. Hello Astrid. Because Zen is not able to just get up and leave, then I have to get up and leave if she wants time out. When Zen is tired I just let her sleep and make sure our daughter is doing something quiet. From your husband's perspective, maybe he doesn't have anything to go to if he were to leave the house. I use my comics as lot as a way to escape. I've got thousands of comics and I just read through them all the time. I also get comics out from the library.

    ReplyDelete
  13. Hello anonymous carer. I spend quiet time at home reading comics and I also watch history documentaries with my daughter because they don't teach History at school. My outside the house hobbies have stopped, as well as my art but at least I still have the comics. How old are your children? When they get older they can help around the house and because they like spending time with you they don't mind doing it. My daughter even though she is eleven, still loves it when I kick the ball around with her in the garden.

    ReplyDelete
  14. Thank you for the messages. It is good to have a strong family. I'm just doing my job.

    ReplyDelete
  15. Damon, thank you for writing this entry. My biggest fear is that my husband will leave me some day. He's never given me any reason to think that, it's just that I can't imagine how anyone would want to stay married to someone as ill as I am. This illness has destroyed my self esteem, and I don't feel like I deserve a carer, not to mention a husband. I feel like such a burden all the time. I feel like I have nothing to contribute to the relationship. How can I get past this?

    ReplyDelete

All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx