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

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?

 

NHBPM Day Twelve: Invisible Disabilities vs. Visible Disabilities

 

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!

NHBPM Day Nine: This Community Care Package? Yes, please!

Welcome readers to another post for the National Health Blog Post Month with WEGO Health!  The prompt that I have chosen for today asks to describe the perfect care package for members of fellow patients.  This actually for my particular condition, with a neurological condition is actually extremely difficult as patients with neurological conditions can be likened to snowflakes – every one different from the next, each one unique.  Not every patient will experience the same set of symptoms, so in reality each patient will need an assessment by social services to really determine the support that they require to live a more independent life.  But, I will talk about my personal experiences with Community Care Packages and what has worked for me personally.

I was assessed by Social Services back in April, and was then allocated my own social worker (whom was now changed!).  I would recommend anyone with a disability to think about contacting their local Social Services and getting themselves a social worker, as personally mine has been extremely useful such as advising me ways in which I can become more independent and self-sufficient as well as helping me sort out problems such as those regarding benefits for example.  My social worker kindly wrote a letter supporting my application for such benefits and thankfully has seemed to work, as I had a letter on the weekend informing me that they have placed me in the Support Group, without needing to attend a medical!  This is the first time this has happened as I usually am denied such benefits after attending a medical, which I have had to appeal on a number of occasions.

The most helpful aspects of my Community Care Package are as follows:

• Access to ‘LifeLine’: Due to many of the aspects of my condition – the constant, dizziness, episodes of vertigo as well as the weakness in my legs means that I am at risk at falls.  In fact, I am constantly at risk of falls, and often experience many throughout the day (especially on very bad days!).  And very often because of the weakness in my legs and arms, I am not always able to get up without assistance from another person.  Now, although I live with my parents, due to work commitments, they are not always at home.  So, this is where ‘LifeLine’ come in very handy, as it’s a medical alert service: It works by whenever I have a fall and cannot get up, or if I become very unwell, all I have to do is press a button which is on a chain worn around the neck.  The receiver will then connect through to a call centre, who will ask me what has happened and if I need assistance.  They will then contact one of the three emergency contacts that I provided to them; and if no one can be contacted they will then alert the emergency services.  As you can see , it can be a fantastic support system for those who are frail, the elderly or the disabled who are at risk of falls and accidents; it really gives a piece of mind, for not only patients but family members as well
• As part of the Disability Team of my local Social Services, they have a Social Inclusion Officer; a designated social worker who is responsible for initiatives that support those who may be socially excluded from the wider community.  Those who, like myself have difficulties with being independent with going out and accessing local groups and amenities.  It was thanks to this initiative with my local council that I was able to find a group like ‘Life 4 Living’ and being able to get together with other people for a few hours.  Now, being the group’s secretary has really brought me out of my shell and given me confidence!  Initiatives like these really work and offer a fantastic lifeline for those who may be stuck in the house alone for long periods; giving the opportunity to not only have fun but also the opportunity to socialise
• Access to mobility aids can be a real benefit for disabled people.  They can obviously be purchased, but often are very expensive, so as part of the perfect community care package would definitely be an access to various mobility aids that will help and support the individual patient to not only mobilise better but also be able to be more independent.  As part of my community care package, I was offered a perching stool so I am able to sit down so I can safely do some cooking independently.  I was also helped to apply for a wheelchair, which due to the weakness in my legs stops me from being able to go out for long periods of time.  Now, with the wheelchair I can go out without the worry of my legs collapsing from under me, and can even go out for longer! – bring on those long shopping trips and days out!!   Although, if it were up to me I would make these mobility aids more fashionable especially for people around my age – available in lots of different, bright colours such as pink!
• Direct Payments: Also, as part of my Community Care Package, I was advised to pay for Direct Payments, which according to the Welsh Government:

This enables individuals to purchase the assistance or services that the local authority would otherwise have provided.  Direct payments support independent living by enabling individuals to make their own decisions and control their own lives.

Direct payments have gradually been extended to include:

• older people;
• carers;
• parents of disabled children; and
• disabled adults.

Thanks to the Direct Payments scheme, I have been able to employ a Personal Assistant, specifically to help me get out of the house and go shopping for items that I need, or for trips to places that I wish to visit.  This is a fantastic scheme, as it allows people like myself to lead a more independent lives and to be able to have help doing things that they wish they could do or go places but haven’t been able to because of individual circumstances.  Having a P.A. means that I can live more independently, go out more and be less dependent on my poor parents!

So they are aspects of my ideal Community Care Package for patients like myself.  Readers, what do you think of this package, are there services that I may have missed which could help patients like myself?  Please share any ideas or stories that you may have regarding Social Services and Community Care Packages!

Weekly Photo Challenge: Wrong

There are many definitions of wrong.  These include:

a) not in accordance with what is morally right or good

b) deviating from truth or fact; erroneous

c) not correct in judgement, opinion, method, etc

d) not proper or usual;  not in accordance with requirements or recommended practice

e) out of order; awry; amiss

Many people make false judgements based on appearance, colour of skin, race, gender and so on.  Below is a picture of me on a night out:

Looking at the picture you might assume that I am healthy, that there is nothing wrong at all in my life.  However, this would be wrong…

This was taken on a rare night out; usually I am too unwell to go out in the evening; instead putting on a pair or pyjamas and watching television cocooned in my snuggie.  Often my legs are far too weak to be able to enjoy a good night out, too dizzy and sick to sit in a restaurant with lots of stimulation surrounding me.

This is also a problem with the disability benefits assessments; too many false judgements are made; on one occasion where I had failed a medical, the report commented on how I looked well, dressed smartly.  So, does that mean that just because I suffer from a chronic illness and am disabled that I cannot dress in nice clothes and look smart?  Seeing me for approximately 20 minutes which mainly involves sitting down, that made a judgement that I was able to walk a certain distance, where in reality it was completely inaccurate, instead my legs give way and left unable to walk very far.

I think it is an important lesson for us all; not to judge people on a first meeting or just by looking at them – as the saying goes ‘When you assume , you make an “ass” out of “u” and “me”! 

Love to know your thoughts and comments – what does the word ‘wrong’ look like to you?

Taking Part in a New Project!!

Hey Everyone

Hope you are all well, sorry I haven’t updated for a few days but again have not been feeling well – some were even spent bedridden as it was so bad, legs feeling so weak and every part of my body feeling so lethargic.  Also, have been quite busy – I have now for a couple of months have been attending a new group within my local area, many of the attendees like myself suffer with some form of disability or illness, or perhaps those who for a number of reasons find themselves stuck in the house alone.  The group, called ‘Life 4 Living is an initiative of the Pontypridd Disability Team, a branch of the RCT Social Services, the ethos of the group being to encourage friendships and for its members to spend time in a friendly, relaxed and fun environment, focusing on how to get the most out of life and to develop a positive attitude to living life to the full despite the circumstances that life has dealt you.

Anyway, recently we have formed what is called a ‘constituted group’ – to make the group more official, and hopefully be able to apply for some funding for trips for all the members – places of interest and fun activities that all members can partake in.  So, to form a constituted group, there needs to be a committee and I am happy to announce they have all voted for me to become secretary!!  So, in the times that I have not been so ill in bed, have been preparing for my new role!

And on to another piece of news…As some of you may remember, I took part in a challenge back in April called the Health Activist Writer’s Month Challenge.  The organisation that ran the challenge is WEGO Health, a fantastic health online community that empowers health bloggers like myself to connect with audiences and each other to spread the word of the health cause or condition that we write about.  Well, they have just launched a brand new project entitled:

It’s called the ‘HealthSecret’ which is based upon a project, PostSecret by a man called Frank Warren whereby people mail their secrets anonymously on a homemade postcard.  So, WEGO Health are asking all health activists or bloggers to mail their secrets to them on a postcard, letter or note – just as long as it gets to them via ‘snail mail.’

They are not even looking for ‘secrets’ per se, they are asking for people to write about themselves, their health condition or health community that affects them and may not be widely known.  It could even be a letter telling others exactly what it is like to live with the condition they have, or even sharing knowledge with people who may have been recently diagnosed.  Basically anything that the health activist wants others to know about their particular health cause or condition.  And with all of the postcards, letters or notes sent in, the people at WEGO Health are going to compile them into a great e-book which you can sign up for here 

So, I think this is a wonderful idea, and gets us all to be a little creative and to spread the word about out particular health conditions – I personally love handwritten mail, they just seem so personal and a sense that a lot of time and thought has gone into writing it and I am looking forward to sending in my contribution.  I have even bought a new writing set especially for the project!!:

So, if you are someone perhaps with a condition which is uncommon or perhaps one which is misunderstood by the general public then get involved in HealthSecret and shine a light on the truth as it is for you!!

You can send all letters, postcards or notes to:

WEGO Health

180 Lincoln St.

5th Floor

Boston

MA, 02111

HAWMC Day 17: Learned the Hard Way…

Welcome again to another day, and another post for the 30 Days, 30 Posts Challenge for WEGO Health Activist Writer’s Month Challenge – and some of these posts have certainly been a challenge!!  I hope you have all enjoyed reading the entries so far, and today’s prompt is another one which really requires a certain degree of reflection:

Learned the hard way…What’s a lesson you learned the hard way? Write about it for 15 minutes today.

There are a great many lessons that someone with a chronic health condition can learn through the journey of being unwell.  However, the one I have chosen was inspired by a quote I found on my Pinterest page, and says the following:

There are so many times where I have sat and wondered what my life would be like if I didn’t have the long-standing brain stem lesion and spastic paraparesis.  Where I would be in life, and what I would be doing with it? Would I even be living in my own place, away from my parents?  So many times, have I dreamt of the life that I so desperately wanted – a good job, my own car and house, good friends to share good times with and so on.  And also been many times where I have wanted to be anyone else but myself.

However, as the quote says, dreaming about a life that we don’t have, very often stops us from living a life that is out there waiting for us to grab it with both hands…

Very recently, myself and my parents have referred myself to Social Services.  To find out what help there may be to help me live a fuller life - maybe help to get me out of the house more instead of being stuck indoors the majority of the time, to gain a more independent and active social life.

And as I have found out, it looks like I am eligible for help.  For instance, there is a scheme called ‘Direct Payments’ where a person is given a grant from the local government in order to employ a personal assistant.  On personal circumstances, and the needs of the person themselves, these personal assistants may be for someone to come in to the house and clean, or in order to pursue social activities in the wider community – trips to the local cinema or theatres, using the services of the local leisure centres and so on.

In addition, I may be eligible for an assessment by Occupational Therapists for mobility aids and adaptations to help me around the house and in order to prevent accidents and falls. It may be that I could have a wheelchair to help get outside of the house more, and to prevent falls outside and without the worry of my legs giving way.  A wheelchair may be a fantastic idea, as it would give me the opportunity to visit more places, and to visit them for longer as I’m finding that whenever I am going out, it is only for short periods of time due to the weakness in my legs and the fact that I am unable to stand (and therefore walk) for long periods of time.

There are also schemes which take disabled or people are otherwise unable to get out of the house on day trips to places outside of the local community as a means to getting to know others and to help starve the loneliness that they may otherwise face.

Therefore, if my days weren’t spent dreaming of a life other than the one that I have, it may be that I may have looked and found help sooner.  I may have thought about the possibility of gaining help from Social Services before it was suggested to us my somebody else if I weren’t wishing away my condition or dreaming about being anybody else other than myself.

If I hadn’t done that I may be living a different kind of life that was waiting for me and just within my grasp - met all different kind of people, made new friends and contacts, and seen different places that I may otherwise not have seen, instead of being stuck inside with no company to speak of…

This is the lesson that I have recently learnt, and learnt the hard way…

HAWMC Day 7: ‘In a Perfect World’…

Hello Everyone, me again!  Time for Day 7 of WEGO Health Activist Writer’s Month Challenge.  Today it is up to the Health Activist to choose what to write about.  So, I have decided to have a look at the bonus prompts that were given to us at the start of the challenge:

In a perfect world…Wrote about one thing you wish you could change.  It can be in your own life or the world at large.

So, I though I would choose ‘world peace’ but though that would be too obvious!

As my blog is about my daily struggles with my condition…I would obviously choose to change so that I would not have to endure the daily symptoms or the struggles that I have to face.

It would certainly make my life so much easier, I would be able to have so much more independence and would not be a burden on my parents or family.

I remember when I was younger, approximately 15 or 16 I was so excited and looking forward for the time when I would be able to start driving lessons.  I would imagine how exciting to would be to pass my driving test and then having my own car – being able to take myself off and going where I wanted, anytime I wanted.

In addition, after finishing my psychology degree, I originally wanted to work within the mental health sector, perhaps as a support worker for those suffering with psychological disorders.  However, in recent years emphasis has been placed on community care and away from hospitals.  Therefore, this means that the majority of jobs in the field require employees to visit people at home, and so is now a job that requires being able to drive or at least the ability to use public transportation.

However, due to the condition that I have – and the constant dizziness, as well as the unpredictability of the vertigo and visual disturbances that I experience, it means that I am not allowed to drive as it would be too dangerous for me to do so…and due to the spastic paraparesis, the weakness in my legs, and due to the fact that they very often give way with no warning and I am unable to stand for very long, would make it near impossible for me to be able to use public transportation and walk long distances to visit people in their homes.

Not having this condition, would also make it much easier to be able to make friends – and keep the ones I have made.  This condition, and the dizziness that I have endured for so many years, have made it so difficult to make and keep friends.  At school, I was often ostracised from my peers as many often thought I was strange.  And even at university when I did make friends, they have not stayed in contact, although I do not know the reason why, it more than likely is due to my condition due to the fact that the dizziness makes it very difficult for me to go out to places, such as large shopping centres or to nightclubs due to the way that they make me feel and how they can bring on episodes of vertigo.  Unfortunately, these places are incredibly popular with my age group and where most people my age want to go when going out with friends.

I have tried to make contact with those who I were closest to at university but none have made contact… So, it seems at the moment I lead a very lonely existence, sure I have my parents, but would be nice to be able to spend time with other people, or even people my own age.

It also incredibly difficult leading a normal life with the spastic paraparesis…especially as I am unable to stand for very long – no more than around 10 minutes,  This obviously causes a problem when thinking about going shopping, hence the reason why I still live at home, as Mum and Dad are able to do the majority of chores such as food shopping, and the like.  And if I do go out then I have to take regular breaks, such as going for a drink so am able to sit down – making it an expensive trip out!!

Also, causes a problem with being able to perform chores effectively – I have to regular breaks and sit downs when I have chores to do, making it take twice as long to do.

Therefore, I would choose to change the dizziness and spastic paraparesis so I would be able to live a normal and more to the point a life that I would want to live….