Christmas – it’s often known as the ‘most wonderful time of the year’. It is also however, a stressful time of year, with all the preparations that need to be made – the presents, food, decorating the home and so on. Add living with a chronic illness to the mix and the stress is exponentially increased. The fatigue that often accompanies many different chronic conditions makes it very difficult to plan for Christmas, or even to feel the joyfulness of this time of year.
Whilst everyone is making lists of all the material goods that they wish to be under the tree come Christmas Day; we spoonies are wishing to be free of the debilitating symptoms that affect our whole life. Simply, we wish for a cure; a cure that will end the chronic illness in which we live, so we can live a normal life.
Give back to those who help us throughout the year…
This year, however, whilst shopping with my carer for presents for my loved ones – parents, friends that have been there for me throughout the year, and of course my dog, made me very happy. It was then that I remembered the old adage ‘it is better to give than receive.’ And this is true, especially when living with a long-term chronic illness – Christmas allows us the opportunity to give back to those who are there for us everyday of the rest of the year. The presents we give, of course, do not have to be expensive, but they are simple small token of thanks for everything that they do for us.
Speaking to my close loved ones, they often speak of the helplessness they feel; they are not able to take away the hurt, upset and anguish that accompanies chronic illness, and as much as they wish they could cure me they obviously are not able to do so. However, instead they do what they can; they offer to help in the ways that make my life easier such as taking me to places that I need to go, be there for hospital appointments, do the little chores that I cannot do, as well as doing the little things that lifts my mood such as buying me chocolate or putting on my favourite film, and during holidays such as Christmas buying me little gifts to cheer me up as well giving me things that are practical.
Therefore, being able to give presents at this time of year, makes me very happy that I am able to do something, even if it is a small token of gratitude, and give back to those who give so much to help me throughout the entire year.
After all, isn’t giving to others encompasses the spirit of Christmas?
It’s November which means only one thing – it’s time again for the National Health Blog Post hosted by WEGO Health! And once again I am determined to take part and write a post everyday regarding my experiences with chronic illness.
As a member of the Chronically Ill community or a ‘spoonie’ as we are more commonly referred (see my post regarding spoonies and the spoon theory here) I need a number of different apps for a variety of different reasons – those apps to remind me to take my medications throughout the day; apps to help keep track of my personal health conditions such as the frequency and severity of the symptoms I am experiencing. But I also have a number of apps that I use regularly that although not health-related, they do help me through bad times due to chronic illness such as Twitter and Facebook to help me keep in contact with all of the friends that I have met during my personal journey with illness. And there are some games that I play to keep me entertained whether it be in bed when I am too weak to get out of bed, or whether it be for the long waits at hospital waiting for my appointment to begin. My personal favourites are ‘Candy Crush Saga’ and ‘Pet Rescue Saga’, and fun word games such as ‘4 Pics 1 Word’. I also use Instagram to not only document in pictures life with my neurological condition but also to help document successes such as going somewhere new or simply as reminders for fun times to look back on when things are bad.
There’s an app for that!
However, those are the apps that I have on my smartphone, but now technology has developed, I also have apps on my tablet computer which I use when I am stuck in bed or when I am pottering around the house to distract myself from the horrible symptoms. The apps that have made it on my tablet are more entertainment based for the reasons that I have given. For example, I have ‘Netflix’ so that I can watch films or TV programmes from the comfort of bed; and especially convenient as it saves a trip out of bed to put a DVD on as my legs are sometimes too weak to be able to do just that. As well as ‘Netflix’ there is also ‘Sky Go’ and catch-up services such as the ‘BBC iPlayer’ and ‘ITV Player’ to allow me to catch-up on programmes that I have missed. I also have a jigsaw puzzle game that helps distract me from the pain, trembling and dizziness which helps, and finally there is ‘Skype’ that I have just downloaded to my iPad that I intend to use to speak to my friends during times that I cannot get to my computer.
As both my smartphone and tablet computer are Apple Products I use the Apple App Store to find the apps that I own. But for those that are health-related such as ‘Pillboxie’ that I use to alert me to take my medications and the ‘Symple’ app to track the symptoms I experience it may also be useful to talk to other spoonies suffering from a similar conditions as yourself to find apps that they find useful. And always try the free app first and then if the app is right for you and your needs then purchase the full version.
Links to Apps that I have found useful:
Symple: An elegant symptom journal for your iPhone. Easy to use, and flexible enough to meet any set of symptoms, regardless of condition or disease
Pillboxie: Pillboxie is the easy way to remember your meds. Other med reminder apps are either too complicated or just downright boring. Pillboxie is easy because it lets you “visually” manage your meds. Scheduling a reminder is as easy as dropping a pill into a pillbox
In 1969, the Swiss American psychiatrist Elizabeth Kübler-Ross published her groundbreaking book called ‘On Death and Dying’. In the book, she introduced the now famous ‘Five Stages of Grief’. Her theory suggested that there are five stages of adjustment after a loss, which are:
Denial
Anger
Bargaining
Depression
Acceptance
The theory described the five stages of grief concerning the mourning of a loved one. However, these five stages have also been used to describe many areas that involve a loss.
These five stages of grief can also apply to a diagnosis of a chronic illness or the onset of a progressive disability. Mourning the loss of good health, the loss of a future that we may not have as a result of the diagnosis. And for the activities that we once enjoyed but which may be prevented by the symptoms of the chronic illness or disability.
[Tweet “The 5 Stages of Grief can be applicable when diagnosed with a chronic illness…”]
The 5 Stages of Grief
An example of these stages in action can be as follows:
Denial
We immediately are in denial of the new situation and cannot accept that it is true. Regarding chronic illness, we may question the doctor and ask whether he is confident that the diagnosis is correct. A request may be made for further investigations as we cannot accept the diagnosis as fact. We may also not be open to new medications or treatments suggested as that would mean the condition is real.
Anger
Like many others, anger is a normal feeling when living with chronic illness. We are angry at the illness itself due to the severe symptoms that it causes; angry at the limitations it places upon our lives; doctors who made the diagnosis as well as those who didn’t believe you. We are often angry at people around us who are still able to do all the things that we are no longer able to do. Anger is one of the five stages that those living with chronic illness reverts to, especially when symptoms are particularly severe.
[Tweet “Anger is a stage those living with chronic illness reverts to, especially when symptoms are severe.”]
Bargaining
Although anger stays for a while, we eventually progress to the third stage which is bargaining. Often, when living with a chronic illness, we become lost in a world of “What if” and “If Only” statements. We want to return to the life we had before illness, so we attempt to bargain with our bodies.
We promise that we will take all our medications correctly, and keep to a healthy diet in exchange for the condition to disappear. A promise is made to do anything in exchange for a cure and to be able to return to a normal life.
[Tweet “When living with a chronic illness we become lost in a world of “What If” and “If Only” statements.”]
Depression
As times passes; we slowly realise that bargaining isn’t working. As there is no sign of a cure or a return to our old life we begin to lose hope. Often, we slide into a depression. The depression isn’t a sign of a mental illness however but a response to the loss of our previous life. We turn inward and withdraw from life, and get stuck in a fog of sadness, despair and hopelessness.
[Tweet “As there is no sign of a cure or a return to our old life we can slide into depression.”]
Acceptance
The move into acceptance is a slow and gradual process. To reiterate it is not a state of being perfectly fine with being chronically ill but is perhaps a state in which we have more good days than bad ones.
However, this is not a single process. These five stages of grief are linear and one in which we often regress to previous steps. The need to work through them all over again, especially at times when the condition gets worse. As we worsen we return to the first stage of denial and we need to work through all the stages just like we did after the initial diagnosis. As our health deteriorates, we are essentially mourning the loss of another piece of ourselves.
[Tweet “Acceptance is about finally recognising and acknowledging the permanence of chronic illness.”]
The importance of acceptance can be brilliantly summed up by a famous quote by Joseph Campbell:
This post is about acceptance – to acknowledge the changes in our situation and declining health. It is not about being completely fine or deliriously happy about the illness or disability. Acceptance is about finally recognising and acknowledging the permanence and reality of life after diagnosis.
To learn to readjust to our new reality we need to embrace the life we have now. Acceptance is not about giving up.
[Tweet “Acceptance is not about giving up but to learn to readjust to our new reality.”]
I thought about the ‘Five Stages of Grief’ recently after a day out with my carer. As my regular readers may be aware, I have had to start using my wheelchair on a much more regular basis, especially when out for hours due to the worsening weakness in my legs.
Last week, my carer commented on how much more confident I seemed since I started using the wheelchair and how I seemed to enjoy days out much more. A reason for this is because I am in the wheelchair, I am not always on edge that my legs will give way, or on the days when the weakness is severe, I am not waiting for my legs to collapse.
However, as I also live with constant dizziness and regular bouts of vertigo and as a result of the continual movement while in the wheelchair, it was challenging for me to use it. So why do I seem so much more confident using the wheelchair than sitting down, and enjoying being out much more when it causes such symptoms?
Accepting the need for the wheelchair has made going out so much easier and more enjoyable
One possibility is that as suggested by the theory discussed, I have finally accepted that I need the wheelchair. Perhaps, I have finally moved through these five stages and now accepted my new reality. Before, I became worried not only about the wheelchair’s effect on my vestibular system but also with the judgements of other people. That however no longer is a concern of mine and happy to be in the wheelchair.
Perhaps, it is much easier to live with a new situation when we have reached acceptance. We need to embrace the new reality to live life to the fullest despite any limitations that chronic illness has placed upon our lives.
[Tweet “It is easier to live life despite the limitations of living with a chronic illness when we have reached acceptance.”]
I was reading the Weekly Writing Challenge over at WordPress ‘The Daily Post’ and I loved the idea of writing a recipe to describe someone and thought maybe I could use this prompt to write a recipe to describe the life of a chronically ill patient! So here it goes:
Recipe for a Chronically Ill Person
Main Dish:
4 cups of pain
2 tablespoons of dizziness
3 cups of fatigue
1 teaspoon of depression
2 afternoon naps
8 oz. of determination and strength
Pinch of wobbly legs
2 oz of awesomeness
1 comfortable bed
All the spoons you can find!!
To Garnish (optional):
1 wheelchair
6 falls
1 awesome carer
1 pet to comfort you during times of sadness and misery
Instructions:
Mix all the ingredients well in a very large bowl with a wooden spoon. Stir well. When everything is combined; pour into a dish and place in the fridge overnight. If desired, add the garnish and serve!
So, if you were to write a recipe for a chronically ill person, what ingredients would you suggest for it? Let me know your thoughts and comment below!
Today I am participating in WordPress Daily Prompt Challenge. I have never done so before, but after seeing today’s prompt, I decided to do so, as it fits in nicely with what my blog is all about – me living with my neurological condition. The prompt is entitled ‘Take Care’ and asks the following:
When you’re unwell, do you allow others to take care of you, or do you prefer to soldier on alone? What does it take for you to ask for help?
This is a fantastic prompt for both me and spoonies everywhere, as living with illness is what we do on a daily basis; day in and day out we are unwell. The prompt, perhaps was meant for those who are, for the majority of the time healthy – asking when in the instances they are ill, what do they like to do – but I am going to write the prompt from my perspective; as a spoonie living with an illness 24 hours a day, 365 days a year (366 days in the event of a leap year!).
Living with a chronic illness is very much like being in constant war with our bodies. Sometimes, the illness wins the battle; leaving our bodies drained of all energy and will to carry on. But with determination and very often needing the help of others we battle on, determined to winning the overall war. Each individual though obviously has their own way of dealing with their illness, but whatever that coping strategy may be we have no choice but to solider on and get through it the best we can; we all need to live our lives the best way we can, whatever our individual circumstances may be.
Living with a neurological condition, when I am bad because of it, I have very little option but to rely on the help of others to see me through. My balance and legs are bad much of the time; I am unable to stand for very long before they collapse from under m, leaving me a crumpled heap on the floor! Sometimes, my legs are so weak that I am unable to get out of bed, and so am reliant on others to help me to the bathroom, or to bring me food and drink whilst I am confined to my bed.
Often, I am too stubborn to ask for help; preferring to soldier on regardless to how my body feels. But, as I am lying on the floor, dizzy, legs too weak for me to be able to get back up, I am reigned to the fact that I am in need of help and call for help (if I am on my own, however, I need to press my lifeline for someone to come and rescue me from the floor). Perhaps it is hard to ask for help because, the condition has progressed gradually, and a few years ago, I didn’t need this level of help in my daily life; I didn’t need someone to help me off the floor after a fall, or needed supporting when walking around the local shops. In my head, I am still abled and not disabled…
That is not to say that I don’t need my alone time – I do; I like sometimes to shut myself in my bedroom from my parents and the outside world. To have some peace and quiet is all I crave when things become too much; often when I am feeling incredibly low because of the condition is bad. I like to stick my headphones on and listen to music, watch a film on Netflix, or even read a book to take me away from the reality of illness and to escape to another world.
Perhaps the way of getting through illness, is not to soldier alone or even to ask constantly for help, but to find a healthy balance between the two…
