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NHBPM Day Twenty-Three: Spring Cleaning!!

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Welcome to Day 23 of this month-long writing challenge!  Today the prompt asks us to clean out our fridge or closet in written form, and to describe what is in our closet and how it might reflect our personality.

My closet, is rather big – taking up nearly half of an entire wall in my bedroom!  So what’s in there?  Well, first there is obviously all of my clothes – trousers, tops, jumpers, coats and so on…

In my wardrobe there are a lots of pairs of jeans – I used to live them in, but since my condition has become worse I have had problems with manual dexterity due to trembling hands, so doing up buttons have become increasingly difficult.  As a result I now live in jeggings and leggings.  I have a variety of tops – some casual, which I tend to wear on the days where I am stuck in the house, or when I am feeling unwell  – loose-fitting clothes; I even have a couple of pairs of loungewear – which are kind of like nightwear, which you can wear all-day!

I also have a range of tops, tunics which are more smart for when I go out somewhere – as I do like to make an effort if I am going out; like to look my best even if I do not feel it!  A few of my tops have butterflies on them too!!  I suppose these items would suggest that I am feminine, and that I do care about what I look like, and what others may think of me also.  All these tops with butterflies would surely suggest that I like butterflies – so they would be right!!  This also is reflected by my jewellery which includes necklaces with butterfly necklaces, butterfly charm bracelet and butterfly earrings!!  Although I do own jewellery with pendants of a flower and other paraphilia but still reflects me being a girlie-girl.

In  my closet, I also own a slanket – basically, a big blanket which you wear, has big sleeves for your arms, and a big pocket for your feet!  I bought mine on QVC in bright pink – another suggestion that I am feminine.  It would suggest that I like to feel comforted; which I do and the slanket does just that – it feels like a massive hug whilst wearing it.  I feel warm, and protected, like being in a cocoon, and great for those days when I am under the weather as well when it is extremely cold outside.

Another part of my closet, is more of the entertainment centre – it has a lot of my books, especially those by Jodi Picoult, as well as others.  This would suggest that I am a bookworm, and love to read, as well as learn as some of the books are non-fiction.  And of course a range of books on dizziness, health and the brain, so would further suggest that I am detail-orientated – if something is wrong with me, I like to know all the details that I can so I can make an informed decision on any potential plans regarding treatment or further tests.

As well, as books my closet also contains my entire DVD boxsets and films – a whole range from thrillers, dramas through to comedies and romantic comedies and dramas.  The only genre which I don’t really watch is horror films, as they scare me too much!!  These would suggest that I am a film and TV addict – as well as reflecting my wide range of interests in different areas, such as forensics, science as well as medicine and so on.

This is the inside of my closet – what is inside of yours?  And what would it say about you?

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NHBPM Day Twenty-Two: Changes…

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It’s Day 22 of ‘National Health Blog Post Month’.  One of today’s prompt asks us to write about we are thankful for – as I have already done this in a recent post (Day 5: Giving Thanks!) I have decided to use the second prompt.  The second prompt asks us to write about change.

Well, my life at the moment are going through some changes.  The biggest change is that I am going out more, and to new places, thanks to my new personal assistant whom I was able to employ thanks to a grant provided by the local council through a scheme called ‘Direct Payments.’  When I am out with my Personal Assistant, I am not just visiting places that I need to go – but am also starting to visit new places, or places that I have not  been able to access for a long time.  And for the first time, I do not even have to rely on my parents to buy essentials for me, such as shampoos and conditioners, shower gel for me anymore – I can get them myself and even decide on the brand for myself!

                 

The house – outside and inside has also seen some changes this week.  A few weeks ago, I had a visit from a Community Occupational Therapist, to have a chat with me and to look around the house, and whether any adaptations could be recommended to make my life easier moving around the house, and of course, to prevent accidents.  For example, outside my house there are steps leading to the front door, steps which had no rails to hold onto – this for me, causes a real problem, as when I need to circumnavigate steps or stairs of any kind, I need something which I can hold onto, to prevent stumbles and falls, especially when the visual disturbances presents itself as I cannot always clearly see the steps to safely walk down.  Before now, i used to walk down a little grass banking at the side of the house to get to Dad’s car – the Community Occupational Therapist saw a potential danger with doing that – as if when in the case of heavy downfall (which happens a lot in Wales!) the grass will get slippery, and leads to the increase risk for a fall.  So, she referred me for some adaptations to be done to the house – such as external rails for the outside steps, an internal rail for the stairs (we already have one, but the OT thought a second one on the opposite wall would be beneficial) , and a drop-down rail for the bathroom.

 

              

These changes have now all been installed and ready for action – and are already been incredibly handy for me!

Another change that has happened for me lately is the move from using a crutch all the time when I am out and about to using a manual wheelchair.  The reason for this is the worsening of the weakness in the legs, which for me leaves me unable to stand or walk for long periods – obviously when I am with my Personal Assistant, this requires me to be out for pretty much the entire day (around 7 hours), and so need a wheelchair to be able to manage this.

This doesn’t come without its problems however.  One of my main symptoms, as you all know by now is the constant dizziness.  The dizziness, can still be really bad, even when sitting down; a symptom which really won’t go away.  And so the dizziness, is causing a real problem when I am using the wheelchair – being pushed and seeing everything whizz past, doesn’t do anything to help the constant movement that I already live with – and almost makes me feel really unsafe sitting in the chair.  Using the wheelchair going into shops is also a problem, as it causes the need to look up to see items – and tilting my head back to look up is one of my triggers – and can set the dizziness to high!!

 

 

 

I would love to hear others’ stories about being new to using a wheelchair and perhaps some tips to help me adjust to the new experience of using a wheelchair.  Any tips would be greatly appreciated!!

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NHBPM Day Twenty-One: Mental Health – Why the Stigma?

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Welcome to another post of the WEGO Health ‘National Health Blog Post Month’!!  It’s Day 21 so, the end is nearly nigh!  I hope you are all enjoying the posts so far.  Ready for the next one?

Today, I have chosen the prompt asking to write about mental health.

As you may now already know, I have a BSC in Psychology, and currently volunteer for a local Mental Health Charity, so this topic and area is of importance to me.  I suppose, I decided to study Psychology at University and later to volunteer for a mental charity because of my own battles with mental health difficulties – that of depression and anxiety.  But what I have found with studying Psychology, volunteering and living with mental health conditions myself is still the stigma attached with mental illness.

We have all been told the statistics – that 1 in 4 people will at some point suffer with a mental health conditions themselves.  The statistic for the prevalence of dandruff, to compare is 1 in 5 people!!  Fancy that, mental illness is more common than dandruff!!  Yet, having dandruff doesn’t have the same negative stigma attached to it!!

In my 3rd year of University, I decided to study the stigma of mental health for my dissertation.  The results were shocking, especially considering that the population that took part in my study were well-educated students; a generation that were supposed to be open-minded and less judgemental.  However, after reading a statement regarding a hypothetical person with paranoid schizophrenia, this all changed.  They deemed the person to be dangerous, less inclined to give the person a job and less inclined to give the person a place to live.

Schizophrenia although producing symptoms such as paranoia, voices inside their head, and often delusions, they are seldom a danger to others – in fact, after reading several pieces of research for my dissertation, a person with schizophrenia is more likely to be the victim of a violent attack than the perpetrator.  So why the ever-increasing negative attitudes towards mental illness?

Well, it could be said that the majority of the blame could be placed at the media’s door.  Although, it is said violent crimes carried out by patients exhibiting mental illness is said to be rare, there are however endless reports in the media, of patients, among them schizophrenic’s, being the perpetrators of such attacks – often resulting in the loss of life of members of the community.  Although, these instances are rare, when they do occur however, they are headline news; published on the front papers with sensationalist headlines – making the connection of their mental illness and the crime.

So, although these crimes are rare, when they do occur and become headline news, they stick in our mind, therefore, making us think that they occur much more regularly than they actually do.  This is known as the availability heuristic.

Perhaps, these false beliefs are also due to the lack of knowledge of such disorders – people simply, believe what they read or hear, without gaining all the facts.  Fear born out of ignorance and misinformation, perhaps?  Or perhaps, the mentally ill are so heavily stigmatised as they deviate from the norm, and as history has shown society has often marginalised people who are different from the society’s view as being ‘normal.’

So, how as we as health activists, and society as a whole start to destigmatise mental illness?  Should media outlets encourage stories of mental illness in a positive way – show that there is hope for people who have been unwell from mental illness? To encourage celebrities and other well-known faces who has been inflicted with such illnesses, so that there is a face to mental illness; to make it less fearful and show that the mentally ill are not so different to the rest of us after all!

I have had the pleasure to meet, through my work as a volunteer to meet many wonderful people who have been touched with a mental illness, from depression to schizophrenia, and can say that they have been the most friendly and kind people I have come across.

So why still the stigma surrounding mental illness?

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NHBPM Day Twenty: Regrets? I’ve had a few…

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Today, is all about the moments that as health activists or as patients we regret.  The moments that looking back on, we wished we had done things differently.

Mine happened during my first year at University.  Around this time the dizziness was becoming increasingly worse, and was also experiencing at the time periods where I was fainting and losing consciousness for a few minutes.  This obviously caused some alarm, not only for myself but also for my parents.  I found myself on a couple of occasions I fainted whilst out walking the dog; waking to find Honey looming over me, licking my face, trying to make me come to!

 

 

After a couple of these episodes, my parents and I made an appointment with the Doctor; he checked my blood pressure, which has always been low, but he wasn’t overly concerned, and didn’t think it was the cause of these blackouts.  He then referred me to see a consultant at the local hospital, but warned me that it would be a wait.  He suggested that if I experienced another episode then I should visit the ‘Accident and Emergency’ department of the local hospital, which may fasten the process.  A couple of weeks later, whilst out with a meal with Mum, I fainted whilst in the bathroom, and so she phoned my Dad, who then came to pick us up and drove us to the hospital.

It wasn’t long after that, I received a hospital appointment with a consultant.  It was in what they called the ‘Day Hospital;, an outpatient department with beds, where if needed you would need to stay there all day to go through endless tests.  Thankfully, I wasn’t there all day, but he examined me throughly, and noticed a couple of abnormalities with my legs, exaggerated reflexes, I think was  the concern.  It was then he referred me for a CAT scan of my brain and spinal cord, as he suspected that it may be caused by some sort of neurological disorder.  After the appointment, I went home, and like most people I googled about the procedure.  It really didn’t seem like such a big deal, but at that time the dizziness was so bad – and was quite bad when lying down staring up at a ceiling, which obviously happens during a CAT scan.

A CT scan

 

Anyway, a few weeks later the appointment came through – my Mum was working so it was Dad who accompanied me.  I admit, that all hospital tests and procedures scare me a little, and was particularly worried about this one, especially as my Dad wouldn’t be able to come with me as CAT scans uses radiation, and I did work myself up because of my anxieties.

I worked myself up so much that I had a panic attack after lying on this small, narrow bed that would be used during the scan, I just felt incredibly dizzy, and didn’t like how open the room was; it felt like I was going to fall of the bed or something!  I just couldn’t go through with it, and so the test was cancelled and I went home.  The tension in the car on the way back home was horrific; Dad was so angry, especially as the trip was wasted.

Looking back on it, that was my one big health moment that I regret.  Not only did I waste my Dad’s time but also the hospital’s time – that cancelled appointment could have been used for someone else that needed it; wasted resource that would surely cost the NHS.  But I also regret it because there was that possibility, that they could have found what was wrong with me a lot sooner – I wouldn’t be diagnosed for at least another four years after that.  Maybe I couldn’t go through with it as at the time I was scared about what they would find; maybe I was not emotionally ready to find out what was wrong with me.  Although, perhaps if they had found out the cause sooner, especially the problem with my legs, then I could have entered physiotherapy a lot sooner, and perhaps my legs would not be as bad as they are now.  But now we will never know; there will always be that ‘what if’…

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NHBPM Day Eighteen: How should I care for someone with your condition? Well, you should….

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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?

 

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