One thing I love about blogging is the blessing of reading like minded blogs. I do love ALL people who work on their creative side for pleasure and/or purpose. I have added a link to a great blog spooniesanctuary.com I found very relatable. I have no doubt Spoonies or anyone with a chronic illness will find the same. Thank you to Karley for allowing me to publish her post.
I read so much of myself in this article. Definitely a good read 💕✨
I haven’t blogged since January, so first an update. I did get over that bout of sick on Sick but had about a month of being stuck upstairs because my legs weren’t obeying my brain. This seemed to be fairly specific to my legs rather than my general health, I’m doing relatively okay cognitively. A neurology follow up appointment is in the offing.
Much more positively, I have “returned to work” after 5 years! This returning doesn’t actually involve going anywhere, I can work in bed if needs be. It’s a very part time contract on a new chronic illness research project with Catherine Hale and the Centre for Welfare Reform. You will hear much more about this soon, including how you can get involved.
To do with starting this work, my “rest” mind wanderings have been frequently landing on thoughts about chronic illness identity. I’m particularly curious…
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Have you heard of the spoon theory? The spoon theory was written by Christine Miserandino (www.butyoudontlooksick.com) It started with a conversation she had with a friend about being chro…
I am a 30+ year old woman, I live with my husband and 2 Children (child 1 and child 2). I have been ill for just over two years and I used to have a life before all this started. I have a chronic i…
Source: Have you tried yoga?
It’s been a while since my last post. I have another inflammation in my lungs landing me the in the hospital (again), this time for a week. Doctors are still working on stabilizing my lungs. I do enjoy challenging people but I really believed they would have found a treatment by now. But the specialists are still working on it, so kudos to them for not giving up on me. And I hope they do find one and soon. I am not too exited over the idea of a double lung transplant. But, like anyone with a chronic illness, patience is key. Hope is scary. And the unknown causes anxiety. We each deal with this in our own way and writing is a good outlet for me.
So, the reason for this post.. Out of hospital I was prescribed oxygen (O2) at home for exertion. One part of this is a machine that is plugged into our electiricty with a 50 ft tube so I can literally go anywhere in my house. So if I am climbing our stairs, cooking, walking on the treadmill, etc. I can use the oxygen that helps to both save energy and reduce my shortness of breath. I also now have access to portable O2 tank, which comes in a heavy ass shoulder bag, for when I go out. We are hitting my worst season, summer. Anyone with a respiratory condition I am sure can relate, so without a doubt the portable tank will get a lot of use.
I can go for walks outside when the weather agrees, go to the mall, out for dinner, visits with friends. It has made a huge impact on my ability to go places and see people, that without the oxygen, I could not. I still get bad days however, which can be discouraging, because once you have a small taste of what able bodied people can enjoy everyday without thinking twice about it, it really is addictive. My therapist is thrilled at how much I have done to date. I was stuck in my bed or at the very least, in my house for a majority of the time. I am sure I don’t have to explain the emotional toll that takes on a person. It’s hard.
With this new found freedom, my illness has changed from being “invisible” to “visible”. It almost reminds me of those programs that do social experiments on unsuspecting people to see how they would react to seeing someone bullied, drop a $100 bill, slack off at a coffee shop or what have you. For me, before the O2 tube, no stranger would know how truly sick I am. I am on predisone, so that has a certain look to it. But you wouldn’t automatically guess that I am taking that medication to help control my lung inflammation. So my chronic illness was truly invisible.
Before the tube, people would be very impatient at how slow I walked. Many times I would get loud sighs, as in, can you move a little quicker here, I haven’t got all day. People would bud in front me, seeing me heading to a register and quicken their pace to get ahead of me. Something my lungs don’t allow me to do is walk quickly. I have gotten many surprised looks about being on disability. A look that seems to me is “nice, someone else taking advantage of the system”. Some of this may be me being sensitive to peoples perceptions but I really don’t think I am too off the mark.
Now that I am wearing the O2 tube, while outside the house, there has been a noticeable shift at how people look and talk to me. I was very self-conscious at the beginning, feeling as though everyone was looking at me. I would study their face as they passed me just to see if they did look and if they stared. And man, do they ever ! Doesn’t matter if it is a man, woman, their age, their own condition. I had a 10 year old boy stop on his bike and ask me “what is that thing on your face?” If he was closer to me I probably would have kicked him off his bike! I would be humiliated if either of my kids talked like that to a stranger, much less in such a rude way. And while out shopping in a clothing store, which takes a lot of breathing power actually, I came out of a waiting room with the tube on and a an older woman, sitting on a walker no less, said to me “poor you”. I again was shocked that first of all she wouldn’t get that people of all ages are affected by illness and secondly to comment there is something to pity. Again I was insulted. In my mind I thought if you knew how this appartus has changed my life you would be saying “lucky me”.
I have had this invisible vs visible illness discussion with a number of people who are close to me, for their thoughts on people’s intentions when they stare or make comments. My husband thinks no one notices. Which I always find amusing. He is constantly trying to minimize my self-critism, which I was very hard on myself adjusting to the tube in public. My daughter, studying to become a nurse, gives an evil eye back to those who stare and has the opinion, why would people not ‘get’ that a person would feel self conscious already wearing a tube & that staring at them makes them feel uncomfortable ? My son’s opinion is, if it makes you feel better, who cares what other people do or think ? Finally, my friends believe people are not trying to be hurtful, they are just curious about someone so young needing oxygen. And saying something like “poor you” is just a person trying to be nice.
After many years of being sick, I have come across a lot more people who judge and criticise then those who are kind and supportive. I keep very close to me the latter, and lucky for me I have quite a few in my life. I am not sure between the two, having my illness hidden or out there for all to see, which is better. I know what makes me feel physically better is having my O2 tank.
To be honest, I have stopped looking into people’s faces for reaction, approval, ignorance because at the end of the day, I am getting out there. I am feeling productive. And that makes me happy. To be able to go shopping with my kids, pick up a few groceries,dinner with my husband, get my hair done …. this is all good stuff. Given the choice, I obviously want to enjoy some “normal” quality of life, regardles of what anyone thinks about how I look. And quite frankly, if it makes them uncomfortable that’s their issue not mine.
PIC 1 : torontobraininjuryblog.com
PIC 2 : www.pinterest.com
I have NSIP which stands for non specific interstitial disease. The following is medical definition. “Definition of Interstitial lung disease describes a large group of disorders…
Source: So I have this thing …
I feel very fortunate to be writing a blog about the experience of living with a chronic illness and the response I have gotten to date. I started just a few months ago but with each post I write, I realize how cathartic and therapeutic this has been for me.
So imagine my surprise when a fellow #spoonie blogger nominated me for The Liebster Award. I am very thankful to Abbie Chandler from livingwithjhs.wordpress.com. I feel blessed to have such amazing support from both the blogging community and from those who too are living with any physical or mental chronic illness. I am grateful.
The Rules :
- Thank the person who nominated you, and post a link to their blog in your blog.
- Display an image of the award in your blog.
- Answer 11 questions that are provided by the person who nominated you.
- Nominate between 5 and 11 bloggers to receive the award.
- Create 11 questions for these nominees to answer.
- List these same rules in your blog.
- Inform those people who are nominated, that they are now nominated for the Liebster Award, and provide a link to your post so they can learn more about it.
My Answers :
1.Who is your biggest inspiration, and why ?
I would have to say my mom has been my biggest inspiration. She grew up poor in Newfoundland, became a teacher, married twice & widowed twice. Gave birth to four children. She had a severe form of RA and had many other health issues over the years. Even in pain, she managed to hold many family celebrations (Thanksgiving was always the best). She never forgot a birthday, nor to send a valentine to my kids, would go every year with me back to school shopping with my endless list and use her teacher discount to help save us money. She taught me how to cook, maintain a household, budget, hold true to my beliefs, was my biggest cheerleader when I too became sick, the list is endless. I would not be the person I am today without her inspiration to keep going. She passed away in 2012 – I have and will always love her deeply.
2.How do you like to chill out with your friends ?
Either shopping or having a girls night in with a good movie and an even better bottle of wine.
3.What is your favourite memory?
I have so many it’s very hard to choose one. I guess looking back it would have been playing catch with my older brother. Our dad died when we were quite young (I was four & my brother was eight). As we grew up, he was mature beyond his years and became a “quasi-dad” to me. We lived in the country, so after dinner my mom would tell my brother to go play catch with me. And he did not hold back. He whipped the ball at me as hard as he could & expected me to throw the ball directly where he held his glove. Learned many life lessons on that front lawn – if you miss the first time, you have to work twice as hard to find what you are looking for, concentrate on the task at hand, get daily exercise, love your family & celebrate your victories.
4. Sweets, chocolate or savoury?
Savoury. I do have the odd craving for chocolate thanks to Mother Nature, but if you every tasted Newfoundland stuffing – the secret ingredient is Newfoundland savoury, you would eat it with everything ! I chose to skip dessert for a delicious appetizer every time.
5. What is the best holiday you’ve been on ?
Our family trip to Cape Cod one summer tops the list for me. Because of my lungs, I am unable to swim in anything chlorinated. Makes for a long summer. When we went to The Cape, swimming in the ocean, watching my kids play in the waves, my husband relaxing and soaking up some sun, digging our feet in the sand, going whale watching, the savoury bites of seafood. Life really doesn’t get any better than that.
6.When you’re having a bad day, what cheers you up?
I would say eating, but that is just a coping mechanism. Honestly, it’s my funny husband who literally can make the kids and I laugh at the most ridicilous things. He will do anything to make me smile on a bad day, including chucking a full moon at me. And he treats me like a queen. I married the strongest and sweetest man I know. I am a lucky girl.
7. What is your greatest achievement ?
I completed my University Degree in Law & Commerce while living independently, not receiving any funding from my mom or loans. It was very challenging and also very rewarding. I learned I could pretty much do anything I set my mind to.
8.What is the last book you read ?
“The Help” by Kathryn Stockett. I bought the book to read to my mom while she was in the hospital. Unfortunately, she died before I could finish reading it to her. But I did finish the book (as I promised) and it was excellent.
9.Do you have any pets ? If so, what do you have ? If not, would you consider having any in the future ?
I love animals and so does my family. Our dog, Daisy is a border collie mix, a rescue from our local Humane Society, and she never leaves my side. My last post I wrote was about my relationship with her. We have a big male tom cat, Mr. Nelson, rescued from a cat mill and is my daughters cat but he is happy to cuddle with just about anyone. We also have a female cat, Cedar, name such as someone dumped in her in a cedar hedge across from my house when she was was too young to be separated from her mother. And finally, Gigi, my son’s guniea pig, who is an active little girl who likes everyone but me.
10.What is your favourite time of year, and why?
Spring ! Oh, all the lovely smells, seeing the snow melt away, the new buds coming up. It’s like a rebirth every year. And it is still cool enough for me to walk outside when I am not feeling too sick. Plus my birthday is the first day of Spring, so there’s that.
11.Finally, what inspired you to create your blog ?
My friends were my encouragers to start writing … anything ! I really didn’t think there would be much point – who would want to hear about the day to day life of someone with a chronic lung disease. But, not giving up, they nudged me lovingly until I decided to give it a try. I forgot how much I love to write. My favourite part of university were the written assignments. And as I have said, it has been very therapeutic. I love connecting with other who also have a chronic illness and am inspired by the many excellent blogs I read.
My Fabulous Nominations :
My Questions :
- Who has been the most influential person in your life & why ?
- How does your family cope with your illness ?
- What’s your favourite clothing item that you couldn’t live without ?
- Who was your best teacher & why ?
- What value do you your friends add to your life ?
- If you are on medication, what is the worst side effect ?
- What is your favorite time of the day ?
- Preference : writing, reading, watching ?
- What is one aspect of your life you most proud of ?
- What makes you laugh until you pee ?
- Name the one part of your body you love the most ?
That is it in a nutshell. This has been a very interesting experience, thinking of the great questions Abbie had for me. I hope I did her justice in response. I think highly of all nominees and look forward to reading your answers. Good luck to you all.
I have been wanting to write about this subject for quite some time, but every now and again, the subject matter means so much to you it seems overwhelming to do it justice. I have a chronic illness & my closest companion is my dog, Daisy. A close member of my family suddenly lost their dog yesterday so I decided to write about Daisy while my heart is filled with love and not with loss.
I have lived with a dog most of my life. While quite young, my family had a very protective German Shepherd who was sweet to us but would rip the pants right off the oil man when he came to fill the tank. When she grew old and sick, my mom and older brother took her to the vet to be put down. My brother has been and is a stoic person. My mother said it was the first time she had seen him cry. We all loved that dog and my brothers’ expression of sadness was a dedication of what a great dog we had growing up.
Next, while I was a late a teen, our family had a Beagle, who loved to chew my text books and eye glasses, even when left high on a table. My mom would ask me, why do you leave things where he can get at them? As I gawked at her in disbelief, a part of me was still impressed this pot bellied stubborn dog would do anything just because he could. He was treasured by my younger brother and I will admit, even though the dog cost me a mint to replace university books, I had a soft spot for him.
When I moved out, I was never quite settled long enough to commit to a dog relationship. I believe once you make a commitment to an animal, they are yours for life. However long that may be. When my husband and I weren’t quite ready for children, I begged him for a dog. We were living in an apartment, so not the best of circumstances, but with love and a good home, dogs adjust. We bought the dog from a pet store, after I had visited the store and fell in love. She was a hound dog and beautiful. Being a first time owner, I made all the classic mistakes. Treated her like a baby (we even had a toy bag we would bring for her everywhere we went). And she did go with us everywhere. She also spent a lot of time alone as my husband and I worked full time. She would destroy things from boredom and attention. She actually managed to rip apart our loveseat right down to the springs.
Eventually, I became pregnant with my first child. We moved to a townhouse and our hound had a lot more room. Unfortunately, our actual baby took her spot in the “pack” and she was not happy about it. Our well trained dog, peed and pooped all over the carpet where our baby played. She would growl if our daughter came near her. Was terrible to walk, or should I say she took me for a drag ! But we made the commitment so we put up with her antics hoping she would grow out of it as our daughter became older.
Then I became pregnant with our second child. At this point I was a stay at home mom and with a two year girl and a baby on the way, had little time or energy to devote to our hound. She acted out even more. Tearing up dirty diapers and smearing them across the carpet. Lunging at anyone coming in our door. She escaped once and nearly ripped into a man crossing the street. We found out around this time we were having a boy. My daughter was very mild and gentle but I heard that boys were much more energetic, curious and hands on. We decided at that point it was time to re-home our hound. It was and still is one of the most heartbreaking decisions I have had to make. I loved her but had become afraid of her. I knew we were not meeting her needs plus I had serious concerns about the dog around my daughter and my son.
My husband found a friend from work who lived in the country who was willing to take her and bring her into his family. He had a large property, his children were older and it seemed like a good fit. I was seven months pregnant when I said good bye to her. I wasn’t strong enough to go with my husband to her new home. Which was selfish. And I have never seen or heard about her again as my husband switched jobs. A number of years went by and although I still felt an absence in my life without a dog, I felt after giving away our hound I didn’t deserve a dog. I had done the one thing I promised myself I would never do. I still feel the heart ache for our hound and wonder if she had a good life.
I did want my children to grow up knowing what it is like to have a dog in their life. And I missed the companionship. So behind my husband’s back I secretly started searching for a dog that needed rescuing. After many months, the local Humane Society had an ad for collie/retriever pups. My best friend and I went to check them out. When we got there, only two pups were left – a male and a female. So they put me in the room with both dogs and I felt drawn to the male dog. As I sat on the floor he ran over and bite my mouth. And puppy teeth are damn sharp ! The female came to me, crawled on my lap and almost immediately feel asleep. Her name was Dottie. And she picked me. We had to go through some formalities and I made many promises to my husband but the four of us brought her home that night. My son was still quite young and kept calling her Daisy. And that name seemed to suit her better.
I did follow through on my promises. I took her to puppy kindergarden. She was taught how to eat while the kids touched her bowl and her food. Because I was her main trainer and spent the most time with her, she became “my” dog. As she grew she resembled a border collie and had many traits of that breed. She loves to fetch, loves to swim, loves the kids, even likes our cats. She had her puppy destructive period, but hey, we needed a new floor in our hallway anyways.
As she grew and matured she has become a lovely dog. I learned from my earlier mistakes and am proud of the part I played to help her become a truly wonderful pet. She had it in her all the time, it just took proper training for her to learn. And she is smart !
Cue my chronic illness. Because my illness is in my lungs I became unable to walk her. I had trouble getting in and out of bed so the walks which helped to manage her energy slowly came to a stop. I was worried that at this point she might start acting out. My husband, daughter & best friend all attempted to walk her but she would struggle off the leash and head straight to our front door and bark until I let her in. At first I thought she just wasn’t used to being walked my anyone but me. I soon realized it was much more than that. As I struggled to do anything in the house, she was my shadow. Watching me, comforting me, even urging me to keep trying. When I could do no more, I rested on the couch and she lay on the floor right in front of me. Only moving when I did.
When we began to see doctors to find out what was going on, I became very anxious. I was scared and because they knew the cause of my illness but not how to treat it, the uncertainty was frightening to say the least. My kids were 10 & 7 when this began. I was worried for them and my husband. But Daisy would stay by my side, put her head on my legs as I cried, laid beside me as I slept – which was and still is a lot. The doctors put me on prednisone & oxygen so I was stuck with a tube in my nose everywhere I went & thanks to the meds, the mood swings were anywhere from OCD, to depression, to anxiety … Not too many good ones. Daisy managed to side step the tube as she followed me. Sensed anxiety so would sit near but make no demands from me. I never had to ask for anything from her, she seemed to know what I needed from instinct.
As the years have gone by, Daisy has been a constant comfort to me. Not able to work any longer, she is my company during the day. She lies with me and never gets out of bed until I do. She is extraordinarily protective and sounds like Cujo if we are alone and someone rings the door bell. Even as I am writing this, she is lying beside me, patiently letting me type my heart away without a peep. I can’t imagine my life without her. She is so much more than a pet. And I deeply love her, bad breath and all. I hope I have added to her life as she has added to mine, but I don’t think that’s possible. I understand that not everyone is a dog person, or even an animal person but everyone knows a true & loyal friend is very hard to come by. Well, this is what Daisy is to me. The most loyal, loving, true friend I have ever had. I am thankful for everyday we have together. She is my best friend.
This post is dedicated to Cosmo who will be greatly missed by his “pack”.
I have to say, I feel like I am almost an expert on prednisone, patient wise at least, as I have been taking it intermittently for 8 years now. Currently, I am on my longest usage at almost 14 months. Starting at 60mgs per day and varying. Daily now I am on 15mgs per day and holding.
The first time I was prescribed prednisone my lung function was extremely low. I had trouble doing ANYTHING. Just rolling over in bed would leave me breathless. I took the stairs in my house on my bum because I couldn’t vertically climb them. I hadn’t been examined by a specialist at this point, but during a pulmonary function test, my stats were so low I was immediately hospitalized. I was given oxygen and prednisone and within days my breathing became easier.
I thought at the time – this is a miracle drug ! It not only helped my breathing but because the dosage was so high, my energy level was supernova. Little did I know then within a very short time I would gain 40 pounds, my cheekbones would disappear, as did my eyes aka moonface & the mood swings were unreal. What moods sank in the most was depression with bursts of anger & sadness.
Prednisone did save my life – so was absolutely necessary. The side effects, for anyone who has been on it for more than a few days, were incredibly difficult. Not just for me but my family as well. I still break into tears from a hug, a look of sympathy, a kind word. Anger props up over someone eating the last bite of chocolate in the house, the shoes not being aligned properly, any comparison from others saying “well I have taken prednisone and it’s not that bad”. She-Hulk emerges and look out for the shit-storm. I try to explain it’s the side effects of a very strong medication but not everyone is understanding.
I have been told that I cannot blame everything on the side effects of prednisone. Ummm, ya, I can. When you have been on it as long and as much as I have, please judge away. If not, I would prefer you say nothing. Or even better something supportive … What ? Supportive ?
If you have never been on this drug long term, you can have no idea what this drug does to a person physically & emotionally. I have discussed this with my therapist and he laughs when he hears someone has downplayed the emotional tole that prednisone takes. He is a specialist for patients with chronic illness so is very familiar with this drug as it is prescribed for many inflammations. He said he has had patients that have halluncinations, seeing a marching band cross their rooms, or believe they are King Henry VIII. Comparatively, I guess I am not too bad off. It still makes me cry or freak out when I try to explain but am dismissed.
Because my lung disease is rare, I have yet to meet anyone with it or be treated for it. My lung specialist is determined to get me off prednisone (except in rare occasions which I can accept). I have tried Imuran, which my body rejected immediately. I am now trying Cell Cept, with prednisone of course, but this drug takes 8-10 weeks to see if it will decrease or stabilize my lung inflammation – which we are all hoping it does. At that point, I can start to taper off prednisone.
Which takes me to my next point about prednisone, the tapering process. I am not sure which is tougher, being on it or being taken off of it. I am exhausted all the time. I have no energy or will to participate in anything. This adds a layer of guilt of what a bad mother and wife I am, no matter what my husband and kids say. They are the true heroes of my life – living with me cannot be easy.
As hard as I try, I am just so tired that all I want to do is cry. Part of the depression from the prednisone, part of my sadness at this situation. I would, as any one of us with a chronic illness, change this if I could. The lung disease is scary and I have no control of when the inflammation is going to flare up. But my ugly friend prednisone is always there … a necessary evil.
I do have amazing support from close family & very close friends who are understanding and have seen the effects of prednisone first hand. They let me cry, create a fury train, rant and rave, sleep, visit anytime I ask and remind me that they love me no matter what. I have given all of them the option to walk away and God bless them, they have stayed by my side. I cannot explain (and here comes the tears) what these people mean to me. I cannot express my gratitude enough.
This a short version of my experience with prednisone. Anyone who takes it as part of of their daily med has my respect, because you my friend, are a warrior. This is not an easy road, which is very much an understatement. But I have hope. Hope that my ugly friend will only be necessary for a few more months. That I will be able to say, thank you for saving me. You are kind of a bitch, but I do appreciate what you have done for my lungs. Now go back where you came from and don’t let the door … well, you know !