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“I Still Remember…”

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Welcome to the twentieth day of the National health Blog Post 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 on given prompts provided by WEGO Health.

Today’s prompt reads:

I Still Remember…Free write a post that starts with this line and describe an unforgettable moment in your health journey (for example; a cancer free diagnosis, etc)

I still remember the first dizzy spell that I experienced when I was eight years old.  Although my Mum suspects I may have experienced dizzy spells when I was really young, however the one that I experienced when I was eight, is the one that I really remember experiencing, and started my long journey living with dizziness.

It was December, and my parents and I were browsing a local DIY store in search of new wallpaper for the living room.  I remember the bright, twinkling lights from the Christmas decorations that were in-store, excited for the upcoming holidays.  We were browsing the aisles when out of nowhere, the dizziness came on out of the blue.  It felt as if I were moving in a room that was still and silent, even though I was actually standing still.  I remember being so afraid of falling, that I suddenly grabbed my Mum’s hand and squeezed so tightly as if it were the only thing that was going to stop me from floating away from my parents.  The increased  sensations of the weakness and trembling in my legs; worried that they were going to collapse.   I was so frightened; unaware of what was happening to me and unable to adequately describe the sensations or the experience of what was happening to me. I felt sick and very warm, and just felt an urge to escape the store and go back to the comfort and security of home.

I can still remember going back to the car, sitting down, but still feeling incredibly dizzy, which continued for some time after leaving the large store.  I thought how scary the whole experience was and that i wished so desperately for it to never happen again.  But as we all know, sadly it was not to be the last dizzy spell that I would experience; instead it would be the first of so many.  Dizzy spells that would not only increase in the frequency, but also increase in the severity, until I would live with it constantly as I am now.  Yes, I still remember….

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Top 3 Tuesday: Pieces of advice for ‘Top Caregivers’

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Welcome to the nineteenth day of the National Health Blog Post 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 on given prompts provided by WEGO Health.

Today’s prompt reads:

Top Three Tuesday: Give three pieces of advice that you would give to a caregiver.

Caregivers are such an aspect of the lives of patients with a chronic illness.  Caregivers fight for us; advocate when needed; care when we are unable to care for ourselves and give us a lot of support through the bad times, when hope seems impossible.  And as they are such an important part of our lives whether they be a parent, a child, a spouse and so on, they too deserve to have plenty of support and advice offered to them when it is necessary.

Caregivers are like superheroes! Working and taking care of those suffering with illness!
Caregivers are like superheroes! Working and taking care of those suffering with illness!

As a chronically ill patient, the top three pieces of advice that I would give to caregivers would be the following:

  1. Try to understand the patient and their situation, whatever that may be.  It is true that it is very difficult to understand the predicament someone is going through, unless you have been through that situation yourself, and this especially applies to the experience of chronic illness.  However, if you are caring for someone with a chronic illness, and particularly those like mine which can cause unusual and unexplained symptoms, listen to what it is like for them and try to understand how frightening it must be for them to go through.  Learn about any possible triggers that can cause symptoms and help them through when they occur by holding their hand or speaking words of encouragement; whatever works for them
  2. 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.
  3. Be understanding and patient.   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.  Or perhaps one of my favourite hobbies – making cards!
If you are a caregiver - then take time for yourself; get your hair done, or find a new pastime or hobby. Love yourself!
If you are a caregiver – then take time for yourself; get your hair done, or find a new pastime or hobby. Love yourself!

But perhaps the most important advice that any caregiver should be given is to take time out for themselves; such as taking up a hobby that takes them out of the house.  It is important that carers do this to prevent them burning out and as a result become unwell themselves, and to generally be able to provide the care that the patient needs.  Also, in my opinion any caregiver deserves a treat and time out for themselves as they definitely work hard in caring for others’ needs.

As ever, please feel free to leave any comments or suggestions below!  Are there any other tips that you would share with your caregiver?  Comment below…

Congratulations if you said that the incorrect statement from yesterday’s post was Number 2 – “Spastic Paraparesis only affects my legs” was the incorrect answer.   You are correct!  I find that my arms are also affected with them feeling stiff and weak some of the time, although not as badly as my legs.

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Think you know my health condition? Then can you spot the incorrect statement…

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Welcome to the eighteenth day of the National Health Blog Post 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 on given prompts provided by WEGO Health.

Today’s prompt reads:

Three Truths and a Lie: Tell us three things that are true about you, your condition, your Health Activism, or your life.  Now tell us a lie.  Do you think we will be able to tell the difference?

 

So, you think you know my health condition?  Let’s see!  Can you spot the incorrect statement from the four statements below?

  1. The dizziness that I experience is constant
  2. The spastic paraparesis only affects my legs
  3. Both hot and cold weather affects my legs
  4. The vertigo is triggered by visual disturbances

Do you know which is the incorrect statement?  Choose which one you think the wrong statement is in the poll below and I will reveal the answer tomorrow!

 

 

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Being visibly invisible: The debate of stigma and invisible vs visible illnesses

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Welcome to the seventeenth day of the National Health Blog Post 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 on given prompts provided by WEGO Health.

Today’s post reads:

Invisible Illness versus Visible Illness: What are some stigmas you have experienced with your invisible OR visible illnesses that have made you feel invisible?  How have you tackled them?

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Etymologically the word ‘stigma’ derives from the Greek word stigma, meaning a mark of disgrace either made from branding or pointing.  The mark was used to mark individuals who were seen as different, and by branding such individuals with visible marks it made it possible for society to avoid them.  In modern times, although many groups of society are not marked in this way, they still are shunned by society.  And those individuals living with illnesses; either visible or invisible are just one example of a group that are still being rejected by the wider society.

As I am someone who has lived through illness at times when it has been both invisible and visible, I can categorically state that stigma occurs in both of these categories.  Obviously, when the illness is invisible, however, it is harder for people to stigmatise individuals with such conditions as you cannot tell that there is a problem with them, unless it has been divulged to them.  These social networks however may be an example of a group that stigmatises an individual because of an invisible illness.  For example, I know many people who constantly live with fatigue, and often as a result have to cancel appointments or plans with others because of it.  Friends and acquaintances however do not tolerate or accept this behaviour as they cannot imagine or accept that tiredness can have such an adverse impact upon a person, and as result can perceive the individual as being lazy or uninterested in their friends.

We need supportive friends when living with an invisible illness and to be believed and supported
We need supportive friends when living with an invisible illness and to be believed and supported

Also, with many invisible illnesses, those suffering with such conditions do not always look sick, and consequently many do not acknowledge the fact that they are in fact sick, and the term “But you look so good!” is therefore banded about.  It is this lack of looking unwell, that results in many not believing a person when they do divulge that they are sick and has become one of the most common stigmas of invisible illnesses.  Another common stigma associated with invisible chronic conditions is the train of thought that such individuals do not deserve such privileges such as a disabled blue badge; a stigma that I myself have faced on several occasions and have written about in a previous post entitled ‘Becoming Visible in an Invisible World‘.

Being in a wheelchair can make you feel as if you are invisible!
Being in a wheelchair can make you feel as if you are invisible!

However, as I am at the stage where I need a wheelchair going out, my condition therefore is now much more visible, so what are the stigmas that I have faced whilst living with a visible chronic health condition?  The first that I have really noticed is the feeling that the condition and disability is taking over my  personal identity; the often feeling that people see me as the ‘girl in the wheelchair’ rather than the person I am.   An example, of this is the fact that when I have been out recently, people often talk to my carer or the person I am with instead of talking directly to myself.  This can be demoralising, and feels as if people perceive all individuals with disabilities as being unable to hold a conversation.  My problem is with my legs and not my intellect, I often feel like screaming.  It’s as if that because people need to look down on us, in the literal sense, then it must mean we all need to be pitied or looked down upon, metaphorically speaking.

When people do not talk to me directly, which I have encountered on numerous occasions, this definitely makes me feel very much invisible.  The way I have tackled this problem, is by holding my head up high and starting conversations with people on checkouts; and in shops as a way of subtly letting them know that although I am in a wheelchair I do not need someone to talk for me; I find it does work and the same cashiers have not done it again!

 

Do you live with an invisible or visible health condition?  What are some examples of stigma that you have personally faced?  As ever would love to hear your thoughts and experiences as well as any other comments you may have!  Feel free to comment below…

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The People I Love to Follow…

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nhbpm_daycount-15

Welcome to the fifteenth day of the National Health Blog Post 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 on given prompts provided by WEGO Health.

Today’s prompt reads:

Favourite Fridays: Who are your favourite people to follow on social media?  (Twitter, Facebook, Instagram, etc.)

 

 

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The first person that I love to follow on Twitter is of course my best friend and surrogate sister @AishaJemima.  Aisha is a truly inspirational woman; who is determined to fight for all those suffering with chronic illness through her work establishing ‘Unseen Magazine’; a magazine coming soon for everyone living with or caring for someone with a chronic illness.  Although, fighting with a chronic illness herself, Aisha works very hard behind the scenes on the magazine, but more than that despite everything she has to contend with her tweets are always extremely positive and uplifting and as well as this she is always sends a lot of support to a great many number of fellow ‘spoonies’.

An example of the positive and uplifting tweets I have received from Aisha:

 

Another person on Twitter who I love to follow is another ‘spoonie’ friend of mine @anyadei.  Anya is a very compassionate and intelligent young woman who is extremely passionate about patient advocacy and self-management of long-term health conditions.  On social media such as Twitter Anya, always raises great and though-provoking questions regarding  topics relating to healthcare, self-management of long-term health conditions and patient issues; as well as tweeting links to a variety of different articles relating to issues she is clearly so passionate about.  And as well as all this and working in this particular field and battling several long-term health conditions herself, she still remains extremely supportive of myself and other spoonies on social media; with supportive tweets sent on days which are proving to be very bad.  It is tweets such as these which really make these bad days bearable.  Thank you xx

And finally…

An organisation that I am involved with and following on various forms of social media is @NeuroNula.  As someone who is living with a long-term neurological condition myself, I know how little support there is out there for neurological conditions.  And not just support but also information regarding other services and organisations that can provide services for patients with neurological conditions.  Therefore, that is why I love following Neuro Nula on social media as well as sharing or retweeting messages that they have posted – if it can help one person to feel like they are not alone in this journey of living with a neurological condition as I have done for so long then it is a job well done.  I really look forward to seeing the final website and meeting other people with neurological conditions and gaining new friends along the way!

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