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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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NHBPM Day Seventeen: Health Playlist! My Condition in Song!

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Welcome to the 17th Post for the annual ‘National Health Blog Post Month’ – and the prompt I have chosen for today is a really fun post!  We have been asked to make a playlist for our health community!  I thought I would include some songs which tie in with the symptoms I experience (as I will find none relating to the condition itself!), or lyrics that I am able to relate to.

1. Tommy Roe – ‘Dizzy’

This is quite obvious why I chose thing song, as it’s plainly obvious by the blog and previous posts, that dizziness is the main symptom that I experience on a daily basis, and can really relate to the lyrics “I am so dizzy, my head is spinning, like a whirlpool it never ends…”  None of the other lyrics really apply to my life, but those lyrics really describes my daily life!!

2. Tenth Avenue North – ‘Worn’

I found this on another fantastic blog, I read, and when I listened to the song, I immediately fell in love with song and its beautiful lyrics and downloaded it straight away!  It can really apply to any illness or condition, and can really relate to the lyrics, which include “I know I need, to lift my eyes up, but I’m just too weak…”.  Great song!

3. Katy Perry – ‘Part of Me’

Although, many pop lyrics pertain to relationships and love, if you look beneath the lyrics, they can really be applied to any situation.  In the song, Katy sings “This is the part of me that you’re never going to take away from me”, and this really applies to all of us battling chronic illness, no matter what form that takes.  We may wish that it could be taken away, but with a condition, like me, it is a part of me, something that cannot be removed…

3.  Les Miserables – ‘I Dreamed a Dream’

I watched the musical from its 25th year Anniversary at the O2 Arena in London about a week ago, and found it to be the most beautiful and breath-taking musical, most of us are familiar with the song ‘I Dreamed a Dream’ thanks to Susan Boyle after she famously sang it at her audition on Britain’s Got Talent.  I instantly fell in love with the musical and its songs, and ‘I Dreamed a Dream’ can be one in which chronic illness sufferers can relate – well kind of!  All of us battling illness everyday, am sure is a million miles away from the ambitions and life they had imagined; dreams which because of illness hasn’t been able to come to any fruition.

4. Kelly Clarkson – ‘Because of You’

I mentioned this song in a previous post about the song; how I related the lyrics to the dizziness and how it males me feel.  You can read that particular post here.

A Little Playlist to remind all chronic illness sufferers how special they are and to encourage them to keep strong!

1. Bruno Mars – ‘Just the Way You Are’

2. Kelly Clarkson – ‘Stronger (What Doesn’t Kill You)’

3. Avril Lavigne – ‘Keep Holding On’

4. Christina Aguilera – ‘Beautiful’

5. Gavin DeGraw – ‘I Don’t Want To Be’

6. Lady Gaga – ‘Born This Way’

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NHBPM Day Sixteen: What would it be to travel with this condition?

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A brand new day, and a brand new post for the WEGO Health ‘National Health Blog Post Month’.  Today is the 16th day of this month-long writing challenge; and once again I have chosen to write a post based upon one of the bonus prompts provided.

The topic I  have chosen as you may have guessed by the title is travel.  The prompt asks to write about what it is like to travel with your condition.

Admittedly, I haven’t actually been on holiday for around six or seven years (it’s actually been so long since I have been on holiday I cannot actually remember the year I last went on holiday!).  Instead, I have decided to write a post on some of the challenges, I would face if I were to go on holiday – and if anyone has any ideas on how to overcome these challenges, I would love to hear them, so get in touch via Twitter, Facebook or email, or add a comment to this post!

If I were to go on holiday, my dream holiday would definitely be Italy – I love the food, and it just looks like such beautiful scenery.  I have especially wanted to go and visit the country after watching the film ‘Letters to Juliet’ – especially, as the beginning of the film is set in Verona, which is the place within Italy I would most like to visit, as Romeo and Juliet happens to be my all-time favourite play, and so would love to visit the balcony etc!

Some of the scenery in Verona

So, what about some of the challenges I feel, I would face whilst travelling.  For starters, if I had to fly to go overseas somewhere, it would not in fact flying that would prevent me from doing so, but instead the airports themselves!  If you have been reading my posts, you would know, that I have problems with high ceilings, as they increase the severity of the dizziness, and also increase the incidence of the episodes of vertigo.  Obviously, most airports have high ceilings, so spending time in such a place for approximately 3 hours (not including delays!) would be incredibly difficult for me, and would certainly make me feel incredibly unwell – all before even leaving the UK!!

So, what are the other options – I know that local bus companies offer a holiday to Lake Garda, including a trip to Verona; or perhaps an option would be a cruise?  However, my fear there would be all the motion from the bus or cruise ship would also make me feel very unwell, and could potentially make the dizziness or vertigo even worse.  My balance is incredibly poor on dry land, so i can only imagine what it would be like on a ship!!  Then there’s the weakness in the legs, recently, I was invited to a meeting regarding the introduction of a Life 4 Living group elsewhere in the South Wales area, and was collected by a Social Worker who runs the group in Pontypridd.  I cannot remember how long we travelled for, but it must have been over an hour – and by the time we arrived at the venue, my legs were so weak, and incredibly stiff, and was in a lot of discomfort afterwards.  And this was only after an hour, goodness what I would experience after several hours travelling on a bus.

Another potential problem is the unpredictability of the condition; never knowing which days I am going to be well, or even how I will feel an hour from now.  It would be a shame to spend a lot on a holiday only for me to be laid up in bed for a day or two; it would feel like a wasted trip especially considering the costs involved with holidays.  Often, the symptoms are often exacerbated by fatigue and overexertion (too much walking for example), and very often on holidays, there is a lot of walking involved, whilst sightseeing and many people report feeling fatigued whilst on holiday or immediately after – so what would a holiday do to someone like myself living with a chronic illness.  I would certainly have to use a wheelchair that has been recently been given to me, although before I even think about going on holiday with it, I will really have to learn to be able to get used with using the wheelchair (at the moment I am having trouble adjusting to it – but will save that for another post!) in places that I am familiar to, before going somewhere unfamiliar.

I know a lot of people, often spend holidays lying on the beach or around the pool at the hotel they are staying in, but that has never really been me – I have always preferred to go out and soak up the atmosphere and culture of the place where I am staying.  I love to go and experience local museums, art galleries, or other tourist attractions – I would much prefer to be doing something rather than just lying around somewhere – even though it has become more increasingly difficult as the illness has progressed, becoming worse and its symptoms becoming more evident.

What are your experiences of travelling with a chronic illness?  Are there any tips that you could share that would make it easier for someone living with a chronic illness to travel and go on holiday?  Share your thoughts!

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NHBPM Day Fourteen: Anatomy Post – Affected by my Symptoms

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Welcome everybody; am writing this post on a quiet Sunday afternoon.  For today I have chosen a short prompt as this particular day I really am not feeling well.  I have chosen a prompt from an earlier date.  In the prompt entitled ‘Anatomy Post’ it was asked that we re-labelled an anatomy picture with new names or descriptions the body parts.  I have chosen to label the different parts of the body which are affected by the differing symptoms that are caused by my condition; some of them are invisible such as the dizziness and vertigo so I have used the body part in which these symptoms originate (i.e. the brain).

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NHBPM Day Twelve: Invisible Disabilities vs. Visible Disabilities

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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!

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