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NHBPM Day Twenty-Five: If I had unlimited spoons….

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Welcome to the 25th Day of ‘National Health Blog Post Month’.  Today, I am going to use a prompt from yesterday.  One of the prompts asks us to write about how we would spend our time if we had more than 24 hours or unlimited spoons.

So, I am going to write about how I would spend my day if I had unlimited spoons – and so had a full day with little to no symptoms and unlimited energy for the entire day ; to be able to do what I liked without worrying about the consequences or whether I would be able to do anything the next day.  How I would love unlimited spoons!

So, if I were to have unlimited spoons, then I would travel to Bath and spend the entire day roaming the streets of the city and all of its wonderful architecture and amazing attractions that it offers.

In the morning, I would have a substantial breakfast to give me plenty of energy for the day ahead.  After breakfast, I would have a shower and get dressed, and prepare a bag for the trip with everything I would need for a day sight-seeing.  My purse, phone, a digital camera to capture the memories of the day.  A map of Bath would also be useful, so I need not get lost in the unfamiliar surroundings of Bath.

 

The City of Bath

Then, I would head to Cardiff to catch a train that will take me to Bath.  It take just over an hour to get from Cardiff to the train station that is central to Bath, with quick access to the City Centre.  I have really wanted to visit Bath for some time now, a lot of people have told me what a lovely city it is to visit.  My first stop would definitely be the ‘Jane Austen Museum’.

I am a big fan of Jane Austen’s works, have read them all, and seen many of the endless adaptations of her works on both TV and film.  My favourite book of hers, is probably ‘Sense and Sensibility’.   I am also interested somewhat, in fashion, and Bath has its own Fashion Museum, so that would be a must-see attraction for me!  Someone I know recently visited Bath, and recommended a little Tea Room, called ‘Sally Lunn’s Historic Eating House and Museum‘ and serves the most famous delicacy that Bath has to offer – the famous Sally Lunn Bun, and the museum shows the original kitchen in which Sally Lunn baked her infamous buns!

A trip to Bath isn’t complete without a visit to the Roman Baths, which is the heart of the World Heritage Site; an honour that the city of Bath was given in 1987.

After visiting some of the main attractions that Bath has to offer, I thunk I would spend the rest of the day exploring the shops that bath has to offer., and then finding somewhere for some dinner at a lovely local restaurant.  And after, I would head home to Wales, for a well-deserved rest!!

If you had an endless supply of spoons for the day; how would you spend it?

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NHBPM Day Twenty-Four: Being there for someone with a Chronic Illness…

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Welcome everyone to Day 24 of the WEGO Health annual ‘National Health Blog Post Month’.  Today, instead of writing one of the prompts provided, I would instead write a follow-up piece to the Day 18 Post ‘How should I care for someone with your condition?  Well you should…‘

What if your friend suffers with a chronic illness?  What type of things could be done to help them?  For friends, it can be harder for them to fully understand the condition on which someone lives with, especially as the friend does not see them everyday, and therefore may not see the full extent of how the condition affects their friend.

Living with a chronic illness can be challenging and frustrating for everyone involved.  The symptoms often fluctuate, for me they can fluctuate frequently; symptoms which can change instantly.  Symptoms can also be unpredictable – never knowing which days are going to be bad and which days will be good; often patients do not know how they will feel one minute to the next.  This can make plans for going out incredibly difficult and challenging.

With a condition like mine, it can also be challenging to know how well I can function from one day to the next; or one minute to the next.  One minute my mobility can be relatively okay, using my crutch and then  the next I can be on the floor after my legs have given way.  This obviously can make incredibly challenging to go out, and often plans need to be made to cover all eventualities.

So, how can you help a friend who suffers with a chronic illness?

Well for starters, to be a friend of someone with a chronic illness, in my opinion you should be non-judgemental and understanding.  It can help if the person educates themselves on their friend’s condition.  To learn how the condition can fluctuate and change, and all of the symptoms which can come with the condition.  With my condition, it can affect mobility, vision, cognition, and also constant dizziness and episodes of vertigo.

It can also be helpful for the friend to learn the changing needs of the patient and never make assumptions of their capabilities of the person.  Often, the person may look really good, but the reality may be the complete the opposite.  So, always, ask the person what mobility aids that they think they may need for the trip out somewhere and also to ask them if there is anything that you can do to help them.

The biggest think that I feel that you can do to help your friend whom suffers with a chronic illness is to take them out on outings for a few hours.  The biggest challenge that I often face is socialising.  Due to my condition, I am unable to drive, and due to the severity of the symptoms and the problems with my mobility, I can not go out alone.  I am unable to cope with public transportation such as buses, as it requires a lot of standing around waiting for its arrival, which as my legs are weak, I just cannot do.  These limitations have severely affected my friendships.

I could invite friends to visit me at my home; but often feels that I am inconveniencing them due to the travelling that they would have to do to reach my house.   Also, when I am having company; I like to make sure the house is clean and tidy for them, so all the preparation that I would have to do, really would deplete the number of spoons for that day, and by the time that they arrive I may feel so tired that I am really not up to socialising or playing hostess to the guest.

When I am invited to spend time with friends ( although I really only have one friend who is able to physically take me out) it really cheers me up,; makes me so happy to see someone I haven’t been able to spend the time with, that I would like.  It is really useful for the patient when being invited out within the wider world for a few hours; for me, a lot of my time is spent inside the house, so anytime that I do get to go out for a few hours is special.

If the person has a chronic illness has, like myself have difficulties with their mobility, then for the friend it is important to consider transportation – if a group of friends, for example, is meeting for a meal, then it is important to include the person with the chronic illness, and to check whether they have means of getting to the venue, and if not then help them with the planning for transportation that will be suitable for the person.  If you are able to drive, then volunteer to pick them up and drop them at home afterwards.

When friends go to these efforts to be inclusive and help us with chronic illnesses, it can make us feel valued as a friend and just makes us feel special, and are always so appreciative of any help that friends offer.  Life with a chronic illness can often be very lonely and isolating, so knowing that friends are there for us, and are willing to go the extra mile to help us with things like going out, and helping with transportation can be so uplifting – and reminds us that we are not alone, and that although it may  not always feel like, we have friends out there who care 🙂

Although, friends should be made aware, that there is always that possibility that we may need to cancel plans at the very last-minute due to the unpredictable nature of chronic illnesses.  This can be very frustrating, and know how upsetting it can be when plans are cancelled.  It is also extremely disappointing for the patient too as when plans are made, we often really look forward to go out and have fun, and to then being unable to function and need to stay at home can be demoralising as we spend so much of our time at home anyway!  So, friend always be understanding when plans have to be cancelled and to never blame the person – it’s not their fault but their condition!  If blame is directed towards the chronically ill person that it can often make us feel even worse.

Another big tip that I can give is to keep in regular touch with the person.  Send a message, whether it be a text, message via social media.  Just to let them know that you are there for them and more importantly that you care.  Often, I find myself totally alone, and the loneliness feels even more evident, so it;s really lovely when I do receive messages.  It makes me feel connected to the world and to others even though at the time it may not feel like it.

So, those would be my tops tips for friends of the chronically ill?  Are there any tips that I have missed out?  Let me know….

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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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