This post is genuinely personal and difficult to write, but as I think it will resonate with many others who are forced to live with illness every day, 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.
[Tweet “Chronic illness has given me so much. However, it has taken much more away.”]
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 somewhat 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. Instead, my life consists 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 is the most significant part of ourselves that make us different but then without it then we wouldn’t be who we have become.
[Tweet “Without chronic illness then maybe 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 living 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 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 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 strength and resilience that was not there before 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.
[Tweet “It’s those differences that make me, despite being ashamed of that which makes me different.”]
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 as 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 disabling 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.
[Tweet “That’s the thing with chronic illness; the abnormal slowly becomes 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.
Image: Google
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 reminding us of our old normal.
[Tweet “The times when our symptoms are mild, we are briefly reminded what our normal looked like.”]
However, this preview of our ‘before illness’ soon ends and again we’re 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 past surroundings. A preview of an old life that although can be seen it is out of our grasp.
When 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 about our old normal. When experiencing our old normal, therefore, it feels unnatural 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 happiness even 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.
[Tweet “A worry about travelling is that you will not be able to cope being in unfamiliar surroundings.”]
The magnificent ‘Adventure of the Seas’
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.
[Tweet “The boarding process for going on a cruise is so easy and relatively quick!”]
My copy of the sail pass card; the card is used for purchases made onboard as well as used to book on and off the ship thereby acting in a similar way to a passport
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 some 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.
[Tweet “Take a piece of carry-on luggage with you with any important and necessary items.”]
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; an extended, 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 traditionally 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.
[Tweet “You need to book a cruise early to guarantee an accessible stateroom.”]
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 rushed 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 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 vessel as there is plenty of room for both abled passengers and those in wheelchairs to steer around 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.
[Tweet “It’s amazing that it never felt crowded on the ship despite a large number of passengers onboard.”]
I would like to thank all of the staff on ‘Adventure of the Seas’ as the majority of the team 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 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 would like to know more? If so, please leave a comment in the section below.
[Tweet “I felt that being in a wheelchair and going on a cruise was a perfect fit.”]
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…’)
A fantastic benefit of using social media as a means of communicating about chronic illness
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’!
