Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.
The first prompt reads as given:
Keep Calm and Carry On…Write and create your own “Keep Calm and Carry On” poster. Try to make it about your own condition! You can then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.
I have chosen this particular phrase for my own ‘Keep Calm’ poster as it reflects my life with my condition at this time in my life. As regular readers of my blog will know that my condition, and a symptom known as spastic paraparesis causes severe stiffness and weakness in my legs; as a result, my legs will often give way and often without any notice. In addition, the stiffness often causes a lot of pain (when I have feeling in them, that is!) and therefore unable to walk very far. As these symptoms have been increasing in severity, I am therefore required to use a wheelchair when I am out for long periods of time, or somewhere which requires a lot of walking.
The dizziness, that I experience however, makes it feel very uncomfortable to use the wheelchair due to the motion upsetting my vision and causing severe dizziness and vertigo. But, as my legs are often too weak and the pain and trembling make it considerably difficult to walk, then I need to disregard the dizziness, and use the wheelchair anyway.
In nearly four weeks, I am going on a cruise, and of course, part of the holiday is going on excursions to some of the cities that we are visiting. In doing so, it requires a lot of walking and due to the severity of the symptoms, I am going to have to use the wheelchair no matter how bad the dizziness is – and therefore I will have to just ‘Keep Calm and Carry on Wheelin’!
Welcome to the sixth day of the National Health Blog Month Challenge hosted by WEGO Health. Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based upon given prompts provided by WEGO Health.
Today’s prompt reads:
Say WHAT?! What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?
This is a tough prompt relating to my health condition as because it is rare and few people really know about it, then as a result I don’t really hear ridiculous things regarding my illness. So, I had to go back to the thinking board for this one. Then I remember a comment I heard whilst out with my carer. The incident happened a couple of weeks after I started using the wheelchair. This one week we arrived in our local town and decided to go for a drink and so after my carer got the wheelchair out of the boot of the car and set it up, I then got out of the car to get in the chair. To do this, I took a tentative and wobbly steps to the wheelchair, and when we were ready I wheeled myself to the local coffee shop. After ordering, and whilst waiting for the order to be ready, I went to look for a table for us to sit at, and as my carer was still at the counter waiting for our drinks, I began to check my emails, when i heard a conversation between a middle-aged couple at the next table. “Tsk, I saw her outside walking to the wheelchair; she obviously doesn’t need it! She must be lazy!”
I was so shocked and upset that I didn’t say anything to the couple and instead focused on my phone, and then as my carer arrived with our drinks, put a smile on my face and started a conversation. Afterwards, I was very angry – how dare they judge me! How dare they judge a situation that they don’t know and obviously do not understand. It saddens me that judgements regarding disability still hasn’t changed despite the so-called legacy of the Paralympics from last year. I’m not saying however that these judgements are representative of the majority of people, but there are still a minority who assume that just because I am physically able to walk, means that I am not in need of a wheelchair. I am sure they would think very differently, if they had seen me stumble around and legs giving way because of the weakness. Yes, I can physically walk but doing so not only causes great discomfort and pain but am also on edge and waiting for them to give way, so using such an aid not only saves me from endless falls but also allows me to enjoy trips out without the worry of when they are next going to give way.
Have you heard something ridiculous about your health condition> If so, what was it? How did you feel or react? Feel free to comment below…
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.”]
Welcome to the 18th post of the ‘National Health Blog Post Month’ – so we’re just over half-way through the month-long writing challenge!! Today’s chosen prompt asks us to write a post giving advice to a caregiver whom is caring for a patient with your condition.
I thought this was a great post when I read it – often caregivers are the forgotten ones in terms of health activism and general writing regarding chronic illness – so thought it would good to write a post which acknowledges the caregivers and to give them advice which would help them care for another patient like me. However, it could also be somewhat of a challenge, also, especially considering that my condition is unusual – not knowing other patients with the same condition means that the advice I will give will only be from my experiences and viewpoint.
1. Try to UNDERSTAND! Perhaps the most important advice that I could give for any caregiver. The condition which I live with is unusual and rare, so it may be useful for caregivers to learn about the condition – about the potential symptoms and effects that it can have on the patient; about any possible deterioration that the patient may experience and any signs that they should look out for.
If, like myself the patient has a personal assistant than that person may want to ask the patient questions about the condition, and all of the symptoms that the patient themselves experiences, and how they can help overcome some of the difficulties experienced during the time they spend with the patient. Find out the needs – for example, I often when using my crutch like to hold onto the arm of the person with me, to help keep my balance and to prevent falls. It is imperative for caregivers to find out the needs of the patient before all else, to let the patient have semblance of control over their lives.
Understanding….
And it also is important to remember that the condition like the one I live with can be very unpredictable – and often means that it can be very difficult to plan ahead of time; to plan days out and other activities as the patient will not know how they will feel as that particular moment of time. Trips might have to be postponed or cancelled at short notice. This can be very frustrating for not only the patient but also the caregiver. In these instances it can also be important for carers’ to be PRACTICAL and INVENTIVE, perhaps thinking of other activities that the patient can take part inside the house – this could be time spent playing board games, or a cinema afternoon playing favourite movies with popcorn and wrapping up with a quilt or blanket. I love to do these sorts of things on bad days when I am stuck inside with my Mum 🙂
2. Always be NON-JUDGEMENTAL: Like myself, I have many different symptoms that I experience as a result of the condition, including dizziness, vertigo, weakness in legs (often resulting in many falls) and so on. Often, these symptoms, just like the condition, itself can be difficult to understand; because of the dizziness and vertigo as well as the visual disturbances, it can cause me often to become very anxious and panic; so caregivers must not only be understanding but also non-judgemental and patient. To help keep me calm and relaxed when out; to keep the effects of the symptoms under my control, instead of the other way around.
Always listen…
It is also so important to LISTEN, be SUPPORTIVE and SYMPATHETIC. This is incredibly important after the initial diagnosis; the patient will be scared and incredibly anxious about what the future will hold – not knowing if the condition will become worse and so on. In this case show that you still love the person despite everything. Also, never assume you know what the person is feeling or experiencing on a daily basis. If they say they are feeling very dizzy, and finding it incredibly difficult and so cannot go out – then BELIEVE them! Give the person a cuddle – or go out and buy them a treat to put a smile on their face. They’ll be very appreciative of it – I know I did when a very dear friend gave me a beautiful bunch of flowers; or when another friend sent me a beautiful butterfly brooch as she knew how much I loved them and wanted to do something nice for me when I was going through a difficult time.
A perfect present to show how much you care!
3. To HELP with certain tasks that the patient no longer is able to carry out themselves. This would be very helpful for the patient; it can be very detrimental to one’s mental health when you struggle with certain tasks which used to come naturally. So helping the person with the condition, would certainly be helpful for the patient – we would certainly be very appreciative of any help that can be provided! And will also help us to save our spoons!
4. To keep a list of contacts somewhere accessible in case of emergencies – including doctors telephone number, emergency contacts and other information that will be useful. This is useful when dealing with conditions like mine, where falls and accidents can very easily occur. I have certain telephone numbers that I can ring if I hurt myself or an emergency crops up when I am on my own.
Keep those emergency numbers handy….
If the patient has deteriorated and mobility has become severely affected; falls and accidents are becoming more prone than I would definitely advise getting a social services assessment done as they can provide excellent resources and can offer assessments for adaptations for the home if needed, as well as offering services such as ‘LifeLine’ where emergency contacts can be alerted in the event of a fall or some other accident. They can provide peace of mind for carers when they need to go out but are worried for the patient’s well-being.
4. And lastly, it;s important for carers’ not to burn out themselves so I would advise for them to take time out for themselves – perhaps, join a support group for other caregivers’ or take up a new hobby or past-time. Generally keep fit and healthy so that you are able to provide the care that the patient needs.
So there are my top tips for any potential carers’ for a person with my condition – or any similar to it! What would your top tips for carers’ or loved ones’ be?
Another day, and another blog post as part of the annual WEGO Health ‘National Health Blog Post Month’. Again, I have decided to use one of the bonus prompts provided for today’s post. The prompt that I have chosen really caught my eye; and even more so now, as before my condition deteriorated and started using mobility aids such as my trusted crutch, my condition was very much invisible – even when I am not using the stick, you would never realise that there was anything wrong by looking at me; some may say that I look perfectly healthy. However, slowly and surely it has become more evident that I do have a disability – from using my crutch, to my unsteady gait. And now, when I am out and about for long periods, I have the use of a wheelchair. So now my condition/disability has gone from invisible to become a visible one.
Which got me thinking about the pros and cons of both invisible and visible conditions/disabilities. If you were to become ill – which would you prefer a visible one or an invisible one? Let’s discuss some of the advantages and disadvantages of each…
For starters, in terms of invisible conditions, in my opinion you are much more in control regarding the disclosure of the condition to others, whether it be friends and acquaintances, or employers. Some conditions can produce symptoms which may be embarrassing and hard to talk about; or perhaps the condition is difficult to explain; or the disability may have a huge stigma attached to it, such as fibromyalgia or major depression. However, as these are invisible, then you are under no obligation to disclose such information to avoid such discrimination.
However, those with visible disabilities, obviously have no choice but to disclose the exact nature of their condition, as unlike with invisible disabilities, those which are visible are immediately obvious. This then causes a lot of questions to be asked, and one of the cons of visible disability that people may immediately judge the individual’s abilities – which of course, may be completely inaccurate. They be patronising and condescending towards the individual; treat them as they do not have a brain or a child that needs to be handled with kid gloves. For instance, last week saw the first time I needed to use my wheelchair for an extended period of time, and found that in some shops they spoke to my personal assistant than myself, as if they thought that because I was in a wheelchair and obviously disabled than I didn’t have a brain and couldn’t speak for myself!
So, a major pro of invisible illnesses is that people treat you like everyone else – obviously as they have no idea that there is anything wrong. There are no judgements made about the abilities of the individual. The individual is seen for the person they are instead of the condition that they have.
However, on the other hand, life with an invisible disability is hard; if people in their life know about the condition, then it is often the case that those people are suspicious of the invisible disability or condition as they are no outward signs that there is anything wrong. People often assume that as the person appears normal and healthy than there couldn’t possibly be anything wrong; that it must ‘be all in their head’. Invisible disabilities and conditions are very often misunderstood and stigmatised; even doctors are often sceptical when patients exhibit symptoms such as stomach aches, dizziness; symptoms whose outward signs cannot be seen, and are subjective. When I presented with dizziness, and no cause could be found (not that they really tried searching for answers) then they came to the conclusion that it was due to psychological factors such as anxiety and stress that was the cause. These assumptions are often made by doctors whose patient has an invisible condition; and which often leaves them waiting a long time for a diagnosis.
That must be another pro for the visible disability side – it must be the case that visible disabilities are much easier to diagnose – as there is that outward sign that there is something wrong. An advantage in that there are no suspicions that the person may be faking or exaggerating their symptoms. Although, many places within the UK may disagree as there have been reports attacks against disabled people have increased, when I used the wheelchair however, I found that people were incredibly friendly towards me, and more willing to help, such as opening doors for me, shop assistant more willing to help me find what I needed from the store as well as helping my personal assistant to lift my wheelchair onto the pavement when there were no flat ramp.
I would love to know all of your thoughts – imagine you were to have a chronic health or disability – would you rather have one which was visible or one which was invisible? And why?
Or are there any pros and cons that I may have missed? Let me know!
