This post is deeply personal and difficult to write, but as I think it will resonate with many others who are forced to live with illness everyday, it is therefore an important one to write.
There are many times that I dislike myself and am ashamed of who I have become. If I could be anyone else, I would gladly choose anyone else’s life to live rather than my own. A lot of that is down to the neurological condition that I live with; everything that life with chronic illness has given me, I believe however that it has taken much more away. The symptoms that I endure, and the impact that it has on my life has stripped away friendships, my independence and ability to provide for myself through meaningful employment that was my aspiration after graduating university and before the deterioration of my condition. The dreams that I had and the direction that I wanted my life to take was snatched from me and was instead forced to reevaluate everything and take a different path.
I am sure that I am not the only person living with a chronic illness to feel or have felt this way. To look at others, measuring ourselves against them and ending up feeling rather superfluous in comparison. When I think of my family and seeing myself through their eyes, I often believe that I must be somewhat of a disappointment to them. After all I have not achieved anything substantial during my life thus far, rather my life consisting of being stuck inside the same four walls or attending one hospital appointment after another. These thoughts are not consistent and perhaps are worse during the darkest of days.
However, I came across the most beautifully compassionate and profound quote written by A.A Milne and famously said by his most famous creation, Winnie-the-Pooh.
Perhaps chronic illness are the largest part of ourselves that make us different but then without it then we wouldn’t be who we have become. Living with a neurological condition and its symptoms, for many years before being diagnosed, it has shaped who I have become as a person as a result. If not for living with a neurological condition, I may have become an entirely different person, but then it would not necessarily mean they would be a better person. I like to think of myself as a compassionate and caring person; someone who is there for others and perhaps this part of what defines me as a person is as a result of the experiences of living with this neurological condition.
We often think of chronic illness as being the defining feature of the negative aspects of our personality and lives in general – the loss of independence, loss of self-confidence and so on but perhaps life with a chronic illness may also be the influence for the positive aspects which what defines us. If it weren’t for chronic illness, I personally would never have been such an avid user of social media, or the author of a blog for example and as a result would never have found my close friends that I have made since sharing my experiences of living with a neurological condition. Furthermore, I may not have such a close relationship with my parents if it had not been for the condition that has affected them just as much as myself.
The difficulties faced when living with a chronic illness or neurological disorder are extremely difficult and as a result of living with these for many years we develop a strength and resilience that was not there prior to the onset of symptoms and may not have developed if not for chronic illness.
The people closest to me, can see beyond the neurological condition that I see as being such a big part of my life, and see my value despite the effects of chronic illness, and which I may not recognise in myself. They recognise the things that make me different from everyone else and yet still love me because it’s those differences that make me and despite me being ashamed of that which makes me different from others.
A.A Milne should be celebrated for not only his profound words and insights of life but also for making those who may feel different from everyone else be proud of those differences and allow themselves to celebrate their individuality.
For a couple of days this week, imagine my surprise that I awoke to no trembling or even pain in my lower limbs. None of the severe shakiness that makes me feel that I am balancing on jelly. No sign of the often debilitating pain that feels as if my legs are being squeezed in a vice, and which makes me wish that I could tear my legs off and discard them like many young children do with their dolls.
For these couple of days, my immediate thoughts after waking and realising that neither of these disabling symptoms had returned were “So that’s what normal feels like!” I had forgotten how it felt not to experience incapacitating pain and trembling in the legs. They had become such a part of my life, that without it, it felt almost strange (although was welcome, if it was only for a couple of days!)
Actually woke this morning with no #trembling in the legs and immediately thought 'So that's what normal feels like!' #ChronicLife
However that it is not to say I have always experienced these particular troublesome symptoms or to this degree as I haven’t, although I had struggled with them for so long now I am unable to recall when they first started. That’s the thing with living with a chronic illness; the unusual and disabling symptoms soon become the norm and part of our daily lives. Life with chronic illness slowly become our new normal.
A lot of people have experienced some moment in their lives when it feels that their lives have been divided into a before and after, whether it be through a bereavement, injury, illness or some other life event. A moment in their lives where they have to adapt to a new normal, the lives which they once knew becomes a chapter in someone else’s story.
Perhaps what is most difficult when living with a chronic illness is that we intermittently experience a glimpse into our lives before illness struck and its onset of debilitating symptoms. Times when our symptoms are mild, or even nonexistent and we are reminded what our old normal looked like. However, this preview of our ‘before illness’ soon ends and we are transported back to our new reality of pain, fatigue and the other symptoms that make up our conditions. It’s we have a brief glimpse into an old, familiar room before a door being slammed shut before we had a chance to step inside and familiarise ourselves with our old surroundings. A preview of an old life that although can be seen it is out of our grasp.
When we are given a chance to experience aspects of our past life, however, what is most surprising is that it no longer feels normal, it feels odd as if that life no longer belongs to us. When living with chronic illness, the abnormal soon becomes the norm and without us even realising, we forget what the old normal looked or felt like. When experiencing our old normal, therefore, it feels abnormal and strange, as if that life no longer fits.
The new normal just becomes normal; erasing our past life and who we once were paving the way for life with a long-term condition and who we are now.
Our holiday had started the day before we got on board ‘Adventure of the Seas.’ To avoid the stress of travelling and rushing to get to the port on time, my parents and I drove to Southampton on Wednesday and stayed overnight in a Premier Inn close to Southampton Port. I will admit that the anxiety levels were high, and did work myself up about going on the holiday. However, the anxiety was not about the cruise itself, but rather about the reaction of my neurological condition and the symptoms while being on a ship with the constant motion that it brings. This anxiety was particularly evident before the cruise, the symptoms that I experience have deteriorated with the trembling in the legs increasing in severity, as well as the dizziness becoming much more powerful. Furthermore, a couple of days before the start of the holiday I experienced a total loss of vision. Regular readers of the blog will know that I suffered this particular a few months ago. However, I have not experienced these attacks for some time so as you can imagine it was very disconcerting for them to occur right before going away.
Therefore, due to these circumstances, I was very hesitant about going at all, but my parents and a great friend reassured me that I would be fine, reminding me of all the positives of going such as time away from the house where I spend the majority of my days. Admittedly, the condition is horrible at home, and therefore it would feel the same on holiday as it would at home anyway so may as well take advantage of the change of scenery. But as many spoonies will you relate, when you are so unwell, and symptoms are severe it’s a real comfort being in familiar surroundings with items which bring comfort on the dark days. Therefore, that was one of the worries I had – that being in unfamiliar surroundings and away from all of my items that bring me comfort, I would not be able to cope.
But instead of taking flight away from my fear, I instead I fought against it and on the morning of Thursday 8th May, along with my parents we made our way to Southampton Port and got our holiday started. It is this part of the holiday that I understand why many disabled travellers prefer cruises to air travel. The boarding process was easy and relatively quick! We dropped off our luggage with the porters and parked the car in the long-stay disabled car park, and then carried our hand luggage to the arrivals lounge. In the arrivals lounge, there was a separate booking area for those people like myself, with disabilities. A desk to check passports as well as for having a photograph taken for your sail pass. The sail pass is a credit card sized pass which acts as a form of identification throughout the cruise as well as an onboard payment method linked to a credit card. We then made the short distance along the gangway and then onto the ‘Adventure of the Seas’ for the start of our holiday. We were on board for approximately 1.30 pm, several hours to explore before the ship was due to set sail for the Mediterranean.
Without the hassle of waiting around an airport for hours ready to board, a cruise holiday begins as you step onto the ship. However, it can take a number of hours to be reunited with the luggage that you left with the porters. Therefore it is advisable to take a piece of carry-on luggage with you containing essential items such as any medications, and perhaps a change of clothes for the evening and a swimsuit so you can take advantage of the facilities straight away. As we arrived at our stateroom, I was very pleased.
As I was going to be using the wheelchair for the most of the holiday, we booked an accessible stateroom. Our first choice was a cabin with a balcony, however as all those staterooms were fully booked we settled instead for an inside cabin overlooking the Royal Promenade; a long, open, level area which is home to a series of shops and bars and even offers entertainment on some nights. So, it might have been for the best as, where our stateroom was situated meant that I had a great view of the parades, and so had the choice of watching them from bed if I wasn’t well enough to attend them on those nights. Our stateroom was on the seventh deck, and a short walk to the ship’s library – perfect for a bookworm like me! Advice that I would give if considering a cruise, is to book early to ensure that you can get the type of stateroom that you desire, especially true if wanting a balcony room as they are often the most sought after. The wheelchair accessible stateroom like ours is 1.5 times bigger than the traditional sized staterooms, with widened doors, a wet room, and a raised toilet. The only downside for being a disabled passenger is that to ensure an accessible cabin for your trip (they are only a small number available) you need to book early, and as a result, often miss out on special deals and offers.
The ship itself is beautiful and decadent, and what makes these holidays great is that there are no inaccessible places for those in wheelchairs. There are plenty of lifts onboard, although they are extremely busy during peak times such as before shows, or prior dinner so if you are cruising with a disability I would recommend arriving at places such as the theatres and the dining room earlier to avoid the crowds of people using the elevators. If wanting to watch a film in the Screening Room for instance in your wheelchair, then you really need to arrive in plenty of time before the start of the film as disappointingly there is only one wheelchair seat available and so plenty of disabled passengers are often left disappointed when unable to watch a movie. The ship is spacious and is easy to navigate around the ships as there is plenty of room for both abled passengers and those in wheelchairs to navigate the public areas; the hallways are even wide enough to allow a wheelchair and a person to walk past each other. Although there were plenty of passengers onboard, it often didn’t feel very crowded, however, which perhaps speaks to the size of the ship.
I would like to thank all of the staff on ‘Adventure of the Seas’ as the majority of the staff were extremely helpful, and spoilt us during our stay onboard. Our room attendant, Roseanna was extraordinarily lovely, and always stopped to say hello and made us feel special, such as always remembering our names which for the number of people she must look after cannot be easy! As I spent a lot of time in the cabin, I often saw her as she came into our cabin to make up my bed and every time she asked me how I was feeling and if there was anything I needed, and also had a special nickname for me – Rihanna!
And the food onboard was incredible – the meals were delicious with a variety of choice and most incredibly offering gluten-free or lactose-free varieties on some of the dishes, so those with food intolerances are well taken care of on board. It was such a pleasure to enjoy a starter, main and dessert every night; a decadence that I am most certainly not familiar. Starters such as Crab Cake, Spinach Dip and Chilled Pina Colada Soup were among my favourites. My favourites among the main courses I enjoyed on board was the Asparagus, Peas, Scallops and Crab Spaghetti Pasta and the Ravioli Mare Monte (cheese filled pasta in a crab and mushroom sauce). The desserts most surprisingly were not my favourite dishes during my time on the cruise but did particularly enjoy the Orange and Almond Cake and the low-fat Peach Melba.
All in all, I felt that being in a wheelchair and going on a cruise was a perfect fit – no hassles in airports with the endless waiting around, and cruise ships are fully accessible with helpful and attentive staff, I would say it is so easy for a person in a wheelchair to enjoy a holiday in style.
I thought that I would write a little introduction and overview of what is like to go on a cruise with a disability. In the next post, I will speak about the trip from a personal viewpoint and how I felt on the trip as not only with someone with a disability but also as someone with a neurological condition living with symptoms such as dizziness and issues with balance, etc. Is there any information that I might have missed out on which may be useful to know, or just would like to know more about? If so, please leave a comment in the section below…
Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.
Today’s prompt reads as follows:
Why I write…Tell us why you write about your health. How long have you been writing? What impact has it made on your life? Write for 15-20 minutes without stopping.
Why do I love to write about my health and my life with it? Well, for starters I would like to think that writing is something that I am good at; when living with a health condition, particularly one which is rare and unusual it is therefore only natural to want to raise awareness of the particular condition with which you have been diagnosed. For some people, raising awareness may involve organising events, or even speaking in public regarding their life and their condition. However, as I am an introvert and extremely shy, I therefore do not feel comfortable with public speaking and feel much more comfortable in expressing my thoughts and feeling on paper rather than speaking them out loud. Writing allows me to process my thoughts and feelings regarding my life and the condition that is a large part of it – writing is a very cathartic experience by writing down all my thoughts and feelings, especially the bad. Writing enables you to process your emotions, letting you to let off steam and providing a safe emotional release from the pain and anguish that often accompanies life with a chronic illness.
Another reason why I decided to start the blog and utilise social media as a part of documenting my journey with living with a neurological condition was to connect with others. For such a long time, I felt so lonely and felt as if I was the only person in the world experiencing what I was going through and therefore, I reached out to the health community in a bid to gain support that I could be provided with by the medical community. Friendship and knowledge from others experiencing chronic illness like myself was also something that I wanted to find through the health community as my world had gotten smaller, and as I am unable to get on my own, it is therefore difficult to meet others in real-life. Furthermore, I also thought that keeping a blog, would occupy my time and give me a project that would help with the boredom and monotony that comes with living with an illness and being stuck in the house for long periods as a result.
But, also I thought it would writing about my experiences with a chronic illness and disability, I could help and do my little bit to educate people on the issues that me and others in a similar situation face. For example, that not all disabilities are visible. I have heard great many stories of people with ‘invisible’ conditions having abuse thrown at them, for example when using disabled parking – even though they had the necessary permits and had a legitimate excuse for using the disabled parking spaces. This particular anecdote is extremely common amongst those with invisible disabilities, and have even experienced this myself, which I have written about in a past blog post (see ‘Becoming Visible in an Invisible World…’)
Another story I read, concerned a gentleman who suffered with Ménière’s Disease, a vestibular condition which produces similar symptoms which I suffer from – dizziness, poor balance and co-ordination, and who was arrested for driving under the influence of alcohol after he was unable to walk in a straight line when asked to perform a sobriety test. Therefore, it is important for those, like me suffering from a chronic and life-long condition to stand up and speak out and to make people understand that just because a person may look fine and ‘normal’ it however does not mean to say they are – their disability or illness may be hidden underneath what we may be able to see. This reminds me of the many times when I have gone such as to the doctor’s for an appointment, where I have had my crutch with me and having a few people stare at me, as if they were judging me and wondering why on earth I was using such an aid as I didn’t have a broken leg and looked perfectly healthy.
To conclude, writing and blogging about chronic illness provides an excellent means for an emotional release of the emotions that accompany life with a chronic illness, to connect with others who are living in a similar situation and to educate others’ on the issues that we often face because of chronic illness and disability.
Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.
The first prompt reads as given:
Keep Calm and Carry On…Write and create your own “Keep Calm and Carry On” poster. Try to make it about your own condition! You can then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.
I have chosen this particular phrase for my own ‘Keep Calm’ poster as it reflects my life with my condition at this time in my life. As regular readers of my blog will know that my condition, and a symptom known as spastic paraparesis causes severe stiffness and weakness in my legs; as a result, my legs will often give way and often without any notice. In addition, the stiffness often causes a lot of pain (when I have feeling in them, that is!) and therefore unable to walk very far. As these symptoms have been increasing in severity, I am therefore required to use a wheelchair when I am out for long periods of time, or somewhere which requires a lot of walking.
The dizziness, that I experience however, makes it feel very uncomfortable to use the wheelchair due to the motion upsetting my vision and causing severe dizziness and vertigo. But, as my legs are often too weak and the pain and trembling make it considerably difficult to walk, then I need to disregard the dizziness, and use the wheelchair anyway.
In nearly four weeks, I am going on a cruise, and of course, part of the holiday is going on excursions to some of the cities that we are visiting. In doing so, it requires a lot of walking and due to the severity of the symptoms, I am going to have to use the wheelchair no matter how bad the dizziness is – and therefore I will have to just ‘Keep Calm and Carry on Wheelin’!
Welcome to the sixth day of the National Health Blog Month Challenge hosted by WEGO Health. Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based upon given prompts provided by WEGO Health.
Today’s prompt reads:
Say WHAT?! What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?
This is a tough prompt relating to my health condition as because it is rare and few people really know about it, then as a result I don’t really hear ridiculous things regarding my illness. So, I had to go back to the thinking board for this one. Then I remember a comment I heard whilst out with my carer. The incident happened a couple of weeks after I started using the wheelchair. This one week we arrived in our local town and decided to go for a drink and so after my carer got the wheelchair out of the boot of the car and set it up, I then got out of the car to get in the chair. To do this, I took a tentative and wobbly steps to the wheelchair, and when we were ready I wheeled myself to the local coffee shop. After ordering, and whilst waiting for the order to be ready, I went to look for a table for us to sit at, and as my carer was still at the counter waiting for our drinks, I began to check my emails, when i heard a conversation between a middle-aged couple at the next table. “Tsk, I saw her outside walking to the wheelchair; she obviously doesn’t need it! She must be lazy!”
I was so shocked and upset that I didn’t say anything to the couple and instead focused on my phone, and then as my carer arrived with our drinks, put a smile on my face and started a conversation. Afterwards, I was very angry – how dare they judge me! How dare they judge a situation that they don’t know and obviously do not understand. It saddens me that judgements regarding disability still hasn’t changed despite the so-called legacy of the Paralympics from last year. I’m not saying however that these judgements are representative of the majority of people, but there are still a minority who assume that just because I am physically able to walk, means that I am not in need of a wheelchair. I am sure they would think very differently, if they had seen me stumble around and legs giving way because of the weakness. Yes, I can physically walk but doing so not only causes great discomfort and pain but am also on edge and waiting for them to give way, so using such an aid not only saves me from endless falls but also allows me to enjoy trips out without the worry of when they are next going to give way.
Have you heard something ridiculous about your health condition> If so, what was it? How did you feel or react? Feel free to comment below…
In 1969, the Swiss American psychiatrist Elizabeth Kübler-Ross published her groundbreaking book called ‘On Death and Dying’ in which she introduced the now famous ‘Five Stages of Grief’. Her theory suggested that there are five stages of adjustment after a loss, which are:
The theory as suggested by the book was to describe the five stages of grief in terms of a bereavement of a loved one. However, these five stages of adjustment have been applied to many areas that involve a loss, or a change in a person’s situation such as an end of a relationship and as most spoonies would be able to relate, these five stages of grief can also be applied to life after a diagnosis of a long-term chronic condition or the onset of a progressive disability – mourning the loss of good health, the loss of a future that we may not have as a result of the diagnosis as well as mourning for activities and other situations that was once was enjoyed but which may be prevented by the symptoms of the chronic illness or disability.
An example of these stages in action can be as follows:
We immediately are in denial of the new situation and cannot accept that it is true. In terms of chronic illness we may question the doctor and ask whether he is absolutely certain that the diagnosis is correct or even ask to be retested as we cannot accept the diagnosis as fact. We may also not be open to the new medications or treatments being suggested as that would mean the condition is real.
Like many others, anger is a regular feeling when living with chronic illness. We are angry at the illness itself due to the severe symptoms that it causes; angry at the limitations it places upon our lives; doctors who made the diagnosis as well as those who didn’t believe you. Honestly, we are often angry at people around us who are busy getting on with their lives and who are able to do all the things that we are no longer able to do. In my opinion, anger is one of the five stages that those living with chronic illness reverts to, especially during times when symptoms are particularly bad and in times of a flare.
Although anger stays for a while, we eventually progress onto the third stage which is bargaining. Often, when living with chronic illness we become lost in a world of “What if” and “If Only” statements. We want to return to the life we had before illness and so we attempt to make deals with our bodies. We promise that we will take all our medications correctly, and keep to a healthy diet as well as exercising regularly in exchange for the condition to disappear. We promise to do anything in exchange for a cure; anything to return to a normal life.
As times passes, however we slowly realise that bargaining isn’t working. As there is no sign of a cure or a return to a normal life we begin to lose hope and instead slide into a depression. This isn’t a sign of a mental illness however but a response to the loss of our previous life. We turn inward and withdraw from life, and get stuck in the fog of sadness, despair and hopelessness.
The move into acceptance is a slow and gradual process. To reiterate it is not a state of being perfectly fine with being chronically ill but is perhaps a state in which we have more good days than bad ones.
However, this is not a single process, however but one in which we often regress back to certain stages and the need to work through them all over again, especially at times when the condition gets worse – and so we are back at the denial phase and need to work through all the stages just like we did after the initial diagnosis. As the condition gets worse or we go through yet another flare we are essentially mourning the loss of a piece of ourselves whether it be the loss of mobility, freedom, loss of relationships or the loss of a career.
This need to move into acceptance is brilliantly summed up by a famous quote by Joseph Campbell:
This post is about acceptance – to acknowledge the changes in our situation; the ongoing changes in our health. It is not about being completely fine or deliriously happy about the illness or disability but rather about finally recognising and acknowledging the permanence and reality of life after diagnosis. To learn to live with the illness as best we possibly can and readjust to the new reality and as the quote above suggests to let go of the past and the plans we once had and to embrace the life we have now and move on the best way we can. Acceptance is not about giving up.
I thought about the ‘Five Stages of Grief’ recently after a day out with my Personal Assistant. As my regular readers may be aware, I have had to start using my wheelchair on a much more regular basis, especially when out for hours due to the worsening weakness in my legs. Last week, my personal assistant commented how much more confident I seemed since I started using the wheelchair and how I seemed to enjoy days out much more. A reason for this is because I am in the wheelchair, I am not constantly on edge that my legs will give way, or on the days when I am bad I am not waiting for my legs to collapse.
However, as my regular readers will know, I live with constant dizziness and regular bouts of vertigo and as a result of the constant movement whilst in the wheelchair, it was very difficult for me to use it. So why do I seem so much more confident using the wheelchair than sitting down, and enjoying being out much more when it causes such symptoms? One possibility is that as suggested by the theory discussed, I have finally accepted that I need the wheelchair. Perhaps, I have finally moved through the these five stages and now accepted my new reality. Before, I was also not only worried about the wheelchair’s effect on my vestibular systems but also worried about the judgements of other people, however, that no longer is a concern of mine and happy to be in the wheelchair. Perhaps, it is much easier to live with a new situation when we have accepted that new situation. We need to embrace the new reality to live life to the fullest despite any limitations that chronic illness has placed upon out lives.
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.
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.
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.
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.
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?
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!
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:
parents of disabled children; and
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!