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Walking Through Life with Shaking Legs…

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Recently I have been reading many blogs written by others who also live with chronic illness.  In some of these posts, chronically ill bloggers have been sharing their stories of living with their worst symptoms, and as a result, I thought that I would share my own personal story of life with trembling legs caused by a neurological condition.

If someone had asked me a few years ago what was my worst symptom, then I undoubtedly would have replied with “the constant and unrelenting dizziness.”  The dizziness leaves me with the feeling that my entire perception of the world was off-balance, and at other times my world was spinning around me, leaving me feeling disoriented and sick.  The dizziness can be so severe that when I am out in the big and open world, I feel unsafe and vulnerable as well as the feelings of unsteadiness that I need somebody with me to hold onto due to the fear of falling over.

Now, however, I would have to admit that the trembling in the legs has become my most troublesome symptom.  Like the dizziness, the trembling is constant, unrelenting and has become life-altering.  The severity of it does vary from day-to-day, sometimes minute by minute.

Life has become increasingly unpredictable.

This morning, I woke up at around 8.30.  Although I was awake, when I attempted to get out of bed, I was not able to because the trembling was so severe that I was incapable of standing or even to walk and therefore had to remain in bed until the trembling subsided.  It did after half an hour or so and was able to get up and start the day ahead.  This is unfortunately not uncommon, and recently it has become an increasingly familiar part of my morning routine; a rest from my broken body even before rising from bed.

It doesn’t just affect me in the mornings, however, suddenly finding my legs being uncooperative and too weak to do their job can happen at any time of the day.  Many times I have found myself abruptly crashing to the floor as the shakiness won the battle, leaving my legs giving way.

[Tweet “Life has become increasingly unpredictable.”]

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Of course, as someone living with a chronic illness, the trembling of the legs is not the only symptom that I have to contend with – of course, the dizziness is still a constant feature in my life and am also dealing with chronic pain which at times is excruciating.  So what makes the trembling my worst symptom?

It’s because that out of all my symptoms the trembling is the symptom that I have no treatment for, and therefore no respite from the unrelenting shakiness of my legs.  Even though the dizziness is constant, I do have periods of breaks from the severe bouts, and when the volume is turned down on it, then I am able to find ways to distract myself from the feeling of the earth being tilted on its axis.

It’s the same with the neuropathic pain caused by my neurological condition.  Yes, for the most part, the pain feels like hell, but there are some small periods of time when the pain is bearable and am able to tolerate living side by side with it.  Also, the dizziness and neuropathic pain can be treated with medications, although they seem to be merely a band-aid which can easily be ripped off instead of a cure.  But at least there is some comfort in knowing there is a treatment plan for these symptoms; for the trembling however there does not seem to be anything to treat this particular symptom, and not even distraction techniques help to take my mind off the sensation.

The trembling, dizziness, pain and the other symptoms that make up the neurological condition I live with does get me down, but through all the trials and tribulations that they cause I try to focus on all of the positives in my life.  Such as the amazing support that my friends and family show me every day.  Living with chronic illness can be messy and complicated, but I choose to believe that there are still plenty of silver linings to be found.

[Tweet “Living with chronic illness can be complicated, but silver linings can still be found. “]

So, tell me what is the worst symptom that you live with?

Feel free to comment below!

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I Blog Because…

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I was recently received a DM on my Twitter account from fellow blogger John Sennett asking me if I were interested in taking part in a campaign that he created called #iblogbecause, an initiative to spread positive messages around the blogging community.  Here is his original post on the idea for the campaign to find out more and perhaps even to take part yourself.  So here is my contribution on the reasons behind why I blog.
IIn my personal experience living with a neurological condition has in some ways stolen my voice and effectively trapping me amongst the same four walls in which I spend the majority of my time.

The pain and torment that the symptoms associated with my condition create in my life remain invisible to the rest of the world, of course, there are subtle signs of a life filled with pain and illness if one chooses to notice.  But largely, the life I live with constant and relentless symptoms remain unseen, trapping me in a bubble that only I am aware of as the rest of the world walks on by.

And so I blog because it gives me a voice.

As someone who is somewhat of an introvert and not eloquent in the slightest when it comes to public speaking, I am unable to use my voice to raise awareness of issues and life with an invisible neurological condition.  However, give me a pen and paper (or a computer and keyboard) and I am able to write as some people tell me quite eloquently and to use this to write what life is like with such a condition as well as issues that affect and are important to the chronic illness community.  To have a voice and say in such matters despite symptoms keeping me from being able to leave the house.

Writing can be a cathatric experience...
Writing can be a cathartic experience…

I blog because it enables me from being able to meet others and making friends with such like-minded people and those experiencing similar realities to myself.  I have read a lot of blogs from others also living with neurological conditions or other chronic illnesses and reading their experiences and thoughts has almost mirrored my own and reminded me that although we have different diagnoses and live in different parts of the countries or even living on different continents there are more that unites us than divides us.  Blogging has allowed me to make friends and meet a wide range of different people, people who are there for me and able to lean on for advice and support perhaps even more than I had in my life before I started my blog and utilised social media as an extension of my writing.  Through writing and this blog I am able to inspire others and in turn, inspire me.

I blog because it gives me a focus and an escape from being ill, despite that being the focus of the blog.  Writing allows a cathartic release and escape from illness and pain.  Writing, especially blog posts that are planned, rewritten and edited before being published in the blogging stratosphere takes my mind off being ill and from the symptoms that are making themselves known.  Being able to write and have a focus beyond watching a film or a TV show, quietens the symptoms and allows me a creative outlet for everything that bothers me about living with a neurological condition.
I blog because it is something that I enjoy and above all, it gives me a purpose beyond that of living with chronic illness.

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The things that make me different are the things that make me…

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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.

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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.”]

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Goodbye to a friend…

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Today I am sitting here alone in an empty and quiet house.  And why is that?  Well, sadly just over two weeks ago we had to make the hard decision to put our beloved dog Honey to sleep.

The last picture of Honey taken days before her death
The last picture of Honey taken days before her death

It was a comfort to know that we made the decision that it was in her best interests, as well as taking the pain that she must have been enduring in the final weeks of her life.  However, that does not take away the immense pain of losing a beloved pet, as she was such a big part of our family.  The loss is great, and the loss is even more evident as I am sitting alone in the house whilst experiencing unrelenting symptoms.  Honey was a great source of comfort and companionship on my worst days, especially those that were spent whilst devoid of any human companionship.

Although, if something such as fall were to happen, Honey would obviously be unable to phone or raise the alarm but just the presence of her was a comfort; during the worst falls that I have had over the years, Honey would always come to my aid, well with a quick sniff and lick to ensure that I wasn’t badly hurt before lying down by my side until one of her other humans came home.

On the days where it was just me and Honey and I was unable to get out of bed because of weak and trembling legs, Honey would regularly run upstairs to check on me before settling on her favourite seat back downstairs.  Other times, I would awaken from a nap to find Honey laying on the carpet beside my bed.

Now Honey is no longer with us, and its first time since her passing when I have both been on my own and experiencing one of my worst days and I am feeling much less secure and safe.  I feel like a small child whose security blanket has been snatched from their arms.  Without the dog around to comfort and protect me (yes, every little noise when left alone was seen as a threat to me and would be met with a lot of barking!) it has made this particularly bad day feel that much worse and feel a lot longer than the seven hours I would have spent alone.

For those like me, living with a chronic illness, pets can be a very important presence in our lives.  This is especially considering most of our time is spent in the house, often on our own as those we live with go off to school or work, and we are left in the company of a beloved pet such as a dog.  They help to ease our loneliness that we often feel when living with a long-term health condition and shines a bright light during the darkest of days living with persistent symptoms.

Honey made me laugh so much, even on the days when it seemed I had nothing to laugh about, but she would only have to look at me with her big, chocolate-brown eyes, or do something fun and it would a big smile on my face.

Honey with a potato in her mouth!
Honey with a potato in her mouth!

Yes, they provide companionship and support, but also they become a substitute for friends in a way, our close allies to attempt to live a full and happy life despite chronic illness.  Our beloved pets, give us their unconditional love and support, and the fact that we live with unpredictable and often severe symptoms does not bother them in the slightest, in fact they often show us more love and affection because we do as they can sense that not all is well with us, and they only want to make us feel better in any way they can.

This has been only been my experience of living with a dog for the fourteen years we had with Honey.  Dogs, in particular, are incredibly non-judgemental, not caring what we look like or why we have cancelled on plans, unlike a lot of humans that we come across during our everyday lives.

There are an incredible amount of studies that have shown the many health benefits of owning a pet.  For example, it has been shown that pets can lower blood pressure, lessen anxiety and boost immunity as well as increasing exercise for those with dogs when taking them for their exercise!   There are also the social benefits to help curb loneliness and isolation, such as the ability to meet new people whilst taking a dog for a walk for example.

And yes, I agree that there are numerous health and social benefits to owning a pet, but for those living with chronic illness and/or disabilities they can enrich our lives in so many other ways.
Thank you, Honey, for always being there during my times in need, and for constantly being a source of comfort and companionship.  Thank you for making life brighter when illness threatened to block out the light,

We will never forget you.

Sleep tight, old friend.

My beautiful dog Honey who provides comfort, laughs, cuddles and kisses during times of illness and being bed-ridden!

RIP Honey (2001-2016)

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A Spoonie Norwegian Adventure

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At the end of May came the time that my parents and I have been looking forward to – our annual cruise.  And this year, I have been particularly excited as this year we booked a cruise around the beautiful scenery of the Norwegian Fjords.

As the symptoms associated with my neurological condition had worsened somewhat over the past few months, it did incite some anxiety.  However, after the successful trip to Hay-On-Wye the week before our departure did lessen this somewhat; in fact, I almost felt like Stella after getting her groove back!

The excitement for the trip returned, and the Queen hit ‘Don’t Stop Me Now’ became my new anthem as I had an unfathomable determination that nothing was going to stop me from enjoying this much-anticipated cruise, not even pesky symptoms such as trembling legs.

Time to be monkeying around! (one of our amazing towel animals during our stay created by our lovely state room attendant
Time to be monkeying around! (one of our fantastic towel animals during our stay created by our lovely state-room attendant

Of course, as much as a holiday is a brief escape from the realities of our everyday life, and our enduring physical surroundings, there is no break however when living with a long-term health condition however and all of its accompanying symptoms.

[Tweet “As much as a holiday is a brief escape from our lives, there is no break from chronic illness.”]

There were many times during the cruise that I was overwhelmed by the painful sensations flowing throughout my legs, as well as fatigue dragging me under into its grasps.  As a result, I ended up crashing in our cabin after dinner; curled up in bed in comfortable pyjamas and binge-watching a comforting television programme via Netflix.

And one of the many reasons why I love to cruise is that sleep is much more straightforward to come by then when I’m at home, consumed by chronic pain, with the gentle (sometimes not so gentle) rocking of the ship.

Our cabin on Navigator of the Seas
The view from our room!

At first, there was the inevitable FOMO (fear of missing out) on all the evening entertainment on offer (as well as the embarrassment of knowing that there were young children out longer than myself!).  I  could push through the fatigue, pain and other symptoms to stay on and party through the night.   Then, however, I inevitably will end up missing out on more by being too unwell enough to venture off the ship and explore the beauty of Norway for myself (although granted I was able to enjoy some of the stunning scenery from our cabin with its panoramic ocean view).

[Tweet “I could push through to party throughout the night… but then I would miss out the next day.”]

Also bearing in mind, however, that one of the significant benefits of cruising, especially with Royal Caribbean is that some of its entertainment can be enjoyed from the comfort of your cabin through its broadcasting channel on the TV.  So, I wasn’t always even missing out on the fun, and best of all I could do it in the comfort of my PJ’s!

Every spoonie’s dream!

I did manage to take in one show during our week long-stay on Navigator of the Seas; the ice-show with fantastic ice dancers, which I thoroughly enjoyed.  The flashing of the strobe lights did trigger some episodes of vertigo, however, but with the new mindfulness and meditation exercises I have been practicing, I was able to keep the anxiety under control and not react, i.e., panic when these symptoms arose.

I have written about the benefits of cruising when living with a chronic illness or disability previously so I won’t repeat the points that I have already made.  What I will say however is that Norway is hands down the best cruise destination that I have experienced.  Not only does it offer the most amazingly beautiful scenery but found the style of living in this spectacular country to be incredibly relaxing.

We are so used to observe people rushing around here in the UK, busy and in a hurry to get to somewhere, so it was refreshing to be in a country which appears to be much more laid-back and where life runs at a slower pace.  As someone with a body that is continually weakened and tired by constant and incessant symptoms; always trying to keep up with the fast pace of the world around me, I welcomed and embraced this different lifestyle to our own.

In my opinion, I also believe that the Norwegian Fjord itinerary is the ideal choice for those considering their first cruise, or those travelling with a disability.  As many of the ports are within the centre of the city or town, therefore, when disembarking the ship, you are to explore the area at your leisure as all the local amenities are within easy walking distance.

[Tweet “A Norwegian Cruise is ideal, as the local amenities are within easy walking distance. “]

For me, I found this much less stressful than some of the other places we have visited on other cruises, especially those which require a shuttle bus to transport you from the port, which demanded some waiting around in large and claustrophobic crowds.

Bergen, the first port of call we visited, did require shuttle bus transport from the port. However, the minibus for those with wheelchairs was ready waiting for us as we departed the ship which took the stress out. As fatigue descended upon all of us and we were ready to wave goodbye to Bergen, the minibus was again primed and waiting for us right where it dropped us off.

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Bergen on a grey and damp day

The second port of call, Olden which greeted us straight away with its majestic and beautiful views is often a favourite for those who love to hike, but as someone with mobility problems, I am unable to pursue such adventurous pursuits.  I was not to miss out, however, as a little land-train greeted us from the parking area where the ship was moored, which took us around one side of its lake before travelling down the other and back to the ship.  A must for anyone who wishes to take in the beauty of Olden but has mobility difficulties or is in a wheelchair.

[Tweet “The land-train…a must for anyone wanting to see the beauty of Olden but has mobility difficulties.”]

Unfortunately, when we arrived at the third port of call, I was too unwell to be able to venture off the ship to explore the cosmopolitan town of Alesund.  But instead of dwelling on that what I could not do, I instead focused on everything that I had achieved during the holiday despite the wobbly legs and other symptoms that I was continuously fighting.  Thankfully, the day of rest was exactly what the doctor ordered, and I found myself fit enough to go off the ship and enjoy the wondrous city of Stavanger.

[Tweet “I chose to focus on everything I achieved despite chronic illness instead on what I couldn’t do.”]

Mum and I enjoyed the time to walk around this fantastic city and take in some of the more familiar shops such as H and M, Zara as well as observing the all-too-familiar sights of McDonald’s and Starbucks!

My favourite part of the day was taking a wander up to the old town of Stavanger to appreciate the quaintness of its old cobblestones and the cities old homes. It was on this day that my stubborn streak regarding the use of the wheelchair, insisting that I didn’t need it and pushed through the pain.

Of course, by the end of the day, the pain was excruciating, and I was in need of a long soak in one of the whirlpools aboard the ship, which only seemed to ease the pain for a short time.  That would be a piece of advice for fellow cruisers – a mobility aid is there for a reason – to be used, so don’t become a martyr to the pain or other symptoms that may require you to use the chair.

By doing so, you will be able to do and enjoy much more than if you didn’t use it!

To conclude the adventure of exploring the gorgeousness of the Norwegian Fjords, I would have to affirm that this has to be one of my all-time favourite holiday destinations and that I am now a tiny little bit in love with Norway!

[Tweet “I am now a tiny little bit in love with Norway! “]

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