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| Dr Paradise aka Dr Parachute |
Well, things have been slightly chaotic in the “Hill” household with many unexpected turns of events that have made the past few weeks far from boring.
Before I launch into the personal side of things I want to explain why, in such crazy times, I have continued to carry on regardless. It’s called CONTROL…..
People that know me, are fully aware of my almost pathological need to be in control. It started as child when I had to have the last word, much to my Mother’s frustration. Little did I know, that it was preparing me to fight the biggest challenge of my life so far.
Everyone manages their lives differently but when living with a disability, life threatening or long term chronic illness, there are times when you feel that you have jumped on to a giant snakes and ladders board and slipped back down the back of a brightly coloured serpent to square number 1. It would be very easy to give up at this point, pull the duvet over your head and think that you will face it “head on” tomorrow. The problem is that tomorrow may always be a day away.
To get me through the last few weeks I have actively, as my illness has ramped up, taken control over how much it impacts me and my family’s life. No longer do we call the paramedics but drive in and call the ER up front. This knocks off about 50% of my time in hospital. I now also have an arrangement in place with my local medical facility that if I am having a reaction, and they are available, I can go there for the IV infusion. This has a total turn around time of an hour. I know it sounds very matter of fact but apart from work time, my life has been taken up with medical establishments so any time I can claw back is precious. One thing that has been suggested by the paramedics, if you fall out of the normal drugs administration protocol is to get a "personal paramedic plan". The plan will be the authorisation they need to give the medication required at scene. In an emergency situation this can really help.
My time for “non-ill Sarah” is at work. I’ve made very effort to go in and continue as normal. For me, this is a form of therapy as it allows me to socially interact with others when I would have been indoors on my own feeling sorry for myself. With my colleagues I laugh, chat and forget that my hands and arms are trembling….it’s well worth the effort. But we are all different and act accordingly.
I have found an article on the 5 stages of acceptance of chronic illness. Now, I know that we have already heard of the stages but I have brought them to the fore again as it is important to understand that a long term illness can vary in its severity therefore life can change very quickly. It may help when you fall on to a “why me” day…… and we are all allowed those J
The article is below with the web link
Living with Chronic Illness and Disability
Receiving a diagnosis of a chronic illness or permanent disability means that your life is changed, perhaps forever. It can happen at any age and can be frightening and daunting to face the challenges ahead.
By learning more about your condition and doing what you can to manage it, you can feel stronger and more able to take it all in stride.
Health problems are categorized as "chronic," if they're a long-lasting health condition, as opposed to "acute," which is over fairly quickly, such as the cold or flu.
Chronic illnesses usually begin and progress slowly. They can be difficult to diagnose and have multiple causes, including heredity; lifestyle factors, such as smoking, lack of exercise, diet, etc.; and environmental exposure. Some common chronic illnesses include arthritis, asthma, emphysema, cancer, diabetes, digestive disorders, heart conditions, pain, and sleep disorders -- to name a few.
Sometimes, it takes a long time to find out exactly what is wrong. Although you may have been relieved to finally have a name for your suffering, you may also have felt like some of your worst fears were coming true. With dozens of unanswered questions churning through your mind, you wondered what, if anything, the future held for you.
That’s a perfectly normal reaction. It’s also normal and even necessary to go through a period of grieving. You need to grieve any significant loss in your life. With chronic and debilitating illnesses for which there is no cure, it’s important to grieve the loss of the kind of life you had always pictured for yourself. It’s through grieving your loss that you are able to begin to build a new life.
Although that life will be different than you had planned, it can be every bit as rich and fulfilling.
The journey of grieving usually involves five stages. There’s no set time frame for each stage. You may pass through one stage very quickly or even skip it. You may linger in one stage for a while or even move back and forth through different stages more than once. The crucial thing is to keep moving. While it’s important to give yourself permission to experience each stage as it comes, don’t allow yourself to get stuck in any one stage.
Stage 1: Fear and/or Denial
Often your first reaction to a diagnosis is, “Not me! The doctor must be wrong. I’ve just been pushing myself too hard. If I take better care of myself, I’ll be fine.” You’re afraid and don’t want to believe that this could be happening to you.
At this point, although you have a diagnosis, you probably have very little factual information. Your circle of family and friends may know little to nothing about your illness. Frequently you feel very alone in this stage. The best thing you can do to help yourself move through this stage is to educate yourself. Gather as much factual information about your illness as you can find and study it carefully.
Stage 2: Anger
As the reality of how significantly your life is changing begins to settle in, you will probably be angry – angry at God for allowing this to happen to you, angry at your doctors for not diagnosing you sooner or helping you more, angry at your family, friends and employer for not understanding what you’re going through.
Although anger is a normal reaction, dwelling on your anger will only increase your stress level, making you feel worse, and it will isolate you from the people you most need on your side. The most productive way to deal with anger is to channel it into determination. Set your mind to finding the treatment plan that works best for you.
Stage 3: Bargaining
At this point you may try to “strike a deal” with God, or something similar. You might think: Maybe if you’re good enough, this will go away. It’s important to understand at this stage that your illness is not a punishment for something you’ve done wrong. It is simply one of many diseases that are a part of life here on earth.
Stage 4: Depression
When the reality of your condition sets in, it is not unusual to experience some degree of depression. Your lifestyle is probably changing and you may no longer be able to do some of the things you once enjoyed. Your once hopeful future may seem like a big blank space with a gigantic question mark at the end of it. It’s perfectly normal to feel depressed over these changes. Who wouldn’t?
This is often the stage that is most difficult to move through. Depression brings with it feelings of hopelessness and a substantial decrease in energy. You may feel like going to bed, pulling the covers over your head and waiting for the world to go away. You wonder how you can possibly face the rest of your life with this illness.
The first thing to remember is that you are going to have some good days and some bad days. The more you learn how to take care of yourself and which treatment options help you the most, the more good days you will have.
If your depression is severe or you are feeling suicidal, please talk with your doctor. You may have a chemical imbalance that can be helped with medication. And don’t hesitate to seek counselling. It can really make a difference to have someone help you work through the changes and challenges you are facing.
Your life may not be what you expected but it can be good. In fact, when all is said and done, it may actually turn out to be better than you imagined.
Stage 5: Acceptance and Re-evaluation
Acceptance is not resignation. It is understanding – understanding that your life will be different, but that different can be good; understanding that you can accept your illness without becoming your illness; understanding that your life can still have a positive and productive purpose.
At this stage, it’s time to re-evaluate your life and your lifestyle. When you were healthy you were able to participate in a variety of activities that interested you. Now your energy and physical abilities are limited. Many things in life will catch your eye or spark your interest, but only a few will capture your heart. Now it’s time to focus on what captures your heart. Pursue your passion. Let the other things go. Spend your time and limited energy on what is most important to you. If you do that, you will find your life to be more rewarding and full of purpose than you ever dreamed possible!
You are a unique and special individual, and you will progress through this grieving process in your own way and at your own pace. There is no “right” way to grieve. There is no timetable. Look at each stage as a learning process and a step of personal growth. Then once you’ve made it into that final stage of acceptance, you can begin to manage your illness instead of letting your illness manage you.
By learning more about your condition and doing what you can to manage it, you can feel stronger and more able to take it all in stride.
Health problems are categorized as "chronic," if they're a long-lasting health condition, as opposed to "acute," which is over fairly quickly, such as the cold or flu.
Chronic illnesses usually begin and progress slowly. They can be difficult to diagnose and have multiple causes, including heredity; lifestyle factors, such as smoking, lack of exercise, diet, etc.; and environmental exposure. Some common chronic illnesses include arthritis, asthma, emphysema, cancer, diabetes, digestive disorders, heart conditions, pain, and sleep disorders -- to name a few.
Sometimes, it takes a long time to find out exactly what is wrong. Although you may have been relieved to finally have a name for your suffering, you may also have felt like some of your worst fears were coming true. With dozens of unanswered questions churning through your mind, you wondered what, if anything, the future held for you.
That’s a perfectly normal reaction. It’s also normal and even necessary to go through a period of grieving. You need to grieve any significant loss in your life. With chronic and debilitating illnesses for which there is no cure, it’s important to grieve the loss of the kind of life you had always pictured for yourself. It’s through grieving your loss that you are able to begin to build a new life.
Although that life will be different than you had planned, it can be every bit as rich and fulfilling.
The journey of grieving usually involves five stages. There’s no set time frame for each stage. You may pass through one stage very quickly or even skip it. You may linger in one stage for a while or even move back and forth through different stages more than once. The crucial thing is to keep moving. While it’s important to give yourself permission to experience each stage as it comes, don’t allow yourself to get stuck in any one stage.
Stage 1: Fear and/or Denial
Often your first reaction to a diagnosis is, “Not me! The doctor must be wrong. I’ve just been pushing myself too hard. If I take better care of myself, I’ll be fine.” You’re afraid and don’t want to believe that this could be happening to you.
At this point, although you have a diagnosis, you probably have very little factual information. Your circle of family and friends may know little to nothing about your illness. Frequently you feel very alone in this stage. The best thing you can do to help yourself move through this stage is to educate yourself. Gather as much factual information about your illness as you can find and study it carefully.
Stage 2: Anger
As the reality of how significantly your life is changing begins to settle in, you will probably be angry – angry at God for allowing this to happen to you, angry at your doctors for not diagnosing you sooner or helping you more, angry at your family, friends and employer for not understanding what you’re going through.
Although anger is a normal reaction, dwelling on your anger will only increase your stress level, making you feel worse, and it will isolate you from the people you most need on your side. The most productive way to deal with anger is to channel it into determination. Set your mind to finding the treatment plan that works best for you.
Stage 3: Bargaining
At this point you may try to “strike a deal” with God, or something similar. You might think: Maybe if you’re good enough, this will go away. It’s important to understand at this stage that your illness is not a punishment for something you’ve done wrong. It is simply one of many diseases that are a part of life here on earth.
Stage 4: Depression
When the reality of your condition sets in, it is not unusual to experience some degree of depression. Your lifestyle is probably changing and you may no longer be able to do some of the things you once enjoyed. Your once hopeful future may seem like a big blank space with a gigantic question mark at the end of it. It’s perfectly normal to feel depressed over these changes. Who wouldn’t?
This is often the stage that is most difficult to move through. Depression brings with it feelings of hopelessness and a substantial decrease in energy. You may feel like going to bed, pulling the covers over your head and waiting for the world to go away. You wonder how you can possibly face the rest of your life with this illness.
The first thing to remember is that you are going to have some good days and some bad days. The more you learn how to take care of yourself and which treatment options help you the most, the more good days you will have.
If your depression is severe or you are feeling suicidal, please talk with your doctor. You may have a chemical imbalance that can be helped with medication. And don’t hesitate to seek counselling. It can really make a difference to have someone help you work through the changes and challenges you are facing.
Your life may not be what you expected but it can be good. In fact, when all is said and done, it may actually turn out to be better than you imagined.
Stage 5: Acceptance and Re-evaluation
Acceptance is not resignation. It is understanding – understanding that your life will be different, but that different can be good; understanding that you can accept your illness without becoming your illness; understanding that your life can still have a positive and productive purpose.
At this stage, it’s time to re-evaluate your life and your lifestyle. When you were healthy you were able to participate in a variety of activities that interested you. Now your energy and physical abilities are limited. Many things in life will catch your eye or spark your interest, but only a few will capture your heart. Now it’s time to focus on what captures your heart. Pursue your passion. Let the other things go. Spend your time and limited energy on what is most important to you. If you do that, you will find your life to be more rewarding and full of purpose than you ever dreamed possible!
You are a unique and special individual, and you will progress through this grieving process in your own way and at your own pace. There is no “right” way to grieve. There is no timetable. Look at each stage as a learning process and a step of personal growth. Then once you’ve made it into that final stage of acceptance, you can begin to manage your illness instead of letting your illness manage you.
So why the title above……
Plasma – some of you know that I have been undergoing a rather drastic form of treatment called “Plasma Exchange Therapy”. Oh my goodness, it was amazing. The machine takes your blood out, seperates the plasma, exchanges it for new plasma and then puts your blood back in…..I would love to have been in the room when the Dr/Scientist said “Right, I have an idea about a plasma machine”. The idea is to give my body a rest and a little time, I said a little bottom would be more use…..
In true form we named the machine Optimus Prime because it unfolded like a transformer….truly wonderful piece of kit.
Polyester – after all my hospital visits I needed cheering up and friends came to the rescue to get me out one evening for a night for of full belly laughs and fun. We went to a local venue that appeared to have every single lady over a certain age supporting peroxide blonde hair and polyester dresses. Now, I know I sound mean, and they all looked splendid, but with the moves they were showing on the dance floor mixed with all the peroxide and polyester I was checking out the fire evacuation process as I was sure the combination must have been a fire hazard. I haven’t laughed so much since I feel ill and even though I was almost bed ridden for the following two days it was most definitely worth it. I think my partners in crime probably suffered even more than me……
And finally but definitely not least Dr. Paradise…….Before I was admitted into hospital we had a few trips to the local ER, in a short space of time, to get the “magic juice” administered and luckily the registrar was a doctor called Dr Paradise (yep, his real name). On one of the occasions my friend, Pip and Boo, my 8 year old daughter, came with me. Well, he was an instant hit with both. The man is amazing at putting people at ease and his “George Clooney” ways had my daughter completely in awe, not to mention Pip. Whilst I was being sorted out he swapped sunglasses with Boo and she was taking pictures of him. I think that every ER should have a Dr Paradise, he immediately makes you feel slightly better regardless of how ill you feel or are. He should be on prescription…..
That night whilst Mark was putting Boo to bed, she sleepily turned to him and said “That Dr Parachute was lovely Daddy” even now it makes me giggle.
I did tell him on the following night during my next ER adventure, I think he was impressed J
So, that’s where I currently am. The HUVS is somewhat unpredictable unlike the person with it. I have predictably booked my next night out with the girls, already thinking of outfits and shoes, and looking ahead to the Bank Holiday Weekend.
The past few weeks have made me face up to the severity of my illness but they have also allowed me to re-evaluate how I can manage it. There have been friends who, at a moments notice, have dropped everything to support us. I want to thank Caz, Jax, Philly, Lisa and Pip. I also want to do a big Hi 5 to my parents who have now witnessed the attacks and been there in the ER with me making me laugh while they have cried. And of course to Mark, Jacob and Boo, no thanks needed there……they are the reasons I haven’t stopped fighting……and will continue to be my motivation and inspiration.
Right enough of the soppy stuff, until next time my fellow HUVs followers…..
Sarah x
Sarah x
