My Brain Lesion and Me

The Struggles Continue….

2013-05-17T09:10:21-07:00

Time for a brand new post; I know I have not written a post in a while, and for that I apologise. The truth is that for some time now I have been struggling with my condition, and in particular the dizziness which I live. For whatever reason. the constant dizziness has become much more severe. I do not know whether the severe dizziness that I have been experiencing is a relapse, as the severe dizziness has happened before, or whether the dizziness is simply getting worse.

My reality

I have not been able to talk to many people regarding the sudden deterioration in symptoms; I often find it hard to talk about – when I try I just end up crying and in bits afterwards. Perhaps I find it more difficult to talk to others, such as my family and friends as I do not want to worry them. On top of this also, is the deterioration with the trouble with my legs; both the weakness and trembling in them have become worse. The severe trembling and dizziness, however has recently made it very difficult when out; at both the social groups that I attend as well as the days out with my personal assistant. These symptoms are so troublesome that the places and activities that were so easy for me, has now become much more difficult. Yesterday, I had difficulty in getting back to the car which was parked further away from the garden centre then we usually park – it was not that much further, but because of the severe trembling in the legs, I almost didn’t make back to the car in one piece.

The wheelchair that I have is obviously a solution when my legs become so severe that they hold me back from doing what I want; but alas the dizziness makes it difficult for me to be able to stay in the chair, as I feel so dizzy even when sitting down. What am I to do? A lot of you reading this, may think that I am weird and not able to understand this quandary, heck even I don’t understand it – but unfortunately this is my reality; one in which I face everyday.

Everyone I know keeps suggesting that I go back to the doctors. People constantly ask me to describe the condition and what I go through everyday with it.

But how am I expected to describe something which I do not understand myself? Even the doctors are unable to understand my condition and its symptoms recently the doctor who has been dealing with my condition and has left the practice that I am registered with and so as a result have had to find a new doctor to deal with. Whenever I do go and see the doctor, however, and report in the deterioration and severity in my symptoms I am often met with puzzlement – which obviously doesn’t inspire much confidence!

Recently, my parents booked the cruise that we have been looking at for a while, and although I am excited and very much looking forward to the holiday, this sudden deterioration in symptoms does make me worry slightly about how I will feel next year. Will the severe dizziness still afflict me? Will the dizziness withstand a cruise? Only going on the cruise will i be able to determine this. But looking at the silver lining at least it will be an experience I will never forget, and it is these memories that are priceless…

Wordless Wednesday: How I Have Felt Lately…

2013-05-15T01:46:14-07:00

Sick to Chic!

2013-05-12T06:08:46-07:00

With all the falls that I have been experiencing lately, the crutch that I bought myself last year has taken quite a battering! The crutch itself has dents, scratches – some of the damage that has been caused by the falls has even caused some cuts on myself. Where the paintwork on the crutch has flaked, it has caused the paint to sharpen; and it is these sharpened points that has been causing cuts on my legs and feet when I have had falls in the house.

Also, the anatomical moulded right-handed designs have become uncomfortable, and where it has rubbed against my fingers, a callous has formed there! So I thought that I would treat myself to a new crutch – one which would be more comfortable and not cut me! I remembered reading online on a forum that I often visit, that one lady recommended an online store that sells crutches at a reasonable price. And therefore I headed to Chic Aid Crutches to look at the range that they offered.

And what I found was impressive! Chic Aid Crutches offers an impressive range of different crutches, including full cuff crutches, half cuff crutches, designer crutches and even folding ones! And even more impressive is the wide range of colours that are available! We have all seen the standard NHS crutches – they are heavy, uncomfortable and the grey colour just looks dull and boring. Using them, feels depressing as they are just not fashionable! Why should we be sick and be unfashionable with it? Especially when we have the option to use a bright, colourful and fashionable mobility aid which feels comfortable, lightweight and what’s more is fun! It does not feel like a mobility aid but rather a fun fashion accessory!

After purchasing the crutch, the delivery time was fantastic – I only waited a day for it to arrive, and the crutch was also well-packaged and with no damage to the crutch whilst it was in transit.

Lately, I have really come to love the colour orange – its bright, fun and is a colour that instantly cheers me up. It’s a reminder of a beautiful sunset. And it’s because of this, I chose an orange colour for my new crutch. A beautiful and cheerful colour that will look lovely during these Summer months.

My brand new crutch

And it has some great features – a padded foam covered handle – which is very comfortable to use and what is even more great is that it doesn’t rub against my finger. The height can be adjusted in tow places – the height from the floor to the handle, and between the handle and the cuff. This is great for me, being short! It is also very lightweight and is quiet when it’s being used; great for when I am in the house and my Dad is in bed after working nights, as the NHS standard crutches can be noisy when being used. Another fantastic feature and incredibly useful is the black Pivoflex ferrule, which provides increased stability with their ‘flex’ action – a feature that is great for me, due to my balance problems, and so a mobility that aid that provides increased stability really is a must-have feature.

I really love my new crutch and perhaps one day I will buy more from Chic Aid Crutches and look chic and fabulous whilst being sick!

Thank you Chic Aid Crutches!

Wordless Wednesday: Sanctuary from Chronic Illness

2013-05-01T01:11:33-07:00

Where I often spend my ‘burnout’ days – my bed

HAWMC 2013 Day 30: Recap!

2013-04-30T01:21:59-07:00

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:

You made it! 30 posts in 30 days! Today, write a recap of your experience. What was your favourite prompt? Least favourite? What have you learned?

Well, I did it!! For the second consecutive year I have managed to complete all 30 days with no need to use the ‘free-pass’ cards!! It feels like a huge accomplishment especially as I have experienced several bad days. Preparation seemed to be the key this year, especially as I am busy with other activities such as the Monday and Wednesdays groups that I am involved with and the day out once a week with my Personal Assistant means that I am not in the house all of the time, so I had to write many of the prompts before the day that it was published.

Just like last year, I immensely enjoyed the month-long writing challenge – I loved the challenge of all the prompts. The prompts are not only a lot of fun to write but I also feel that the prompts enable us to look and write about our particular health conditions differently than we would normally. For example, some of the prompts required me to write about topics that I might never would normally. For example, the topic of burnout was selected to be discussed from one of the prompts, and if it wasn’t for the HAWMC I might never have written about the topic. One of the prompts that I found particularly challenging was the Acrostic Poem from Day 13 (Acrostic Poem of my Health Condition) – it wasn’t necessarily the subject matter that was challenging as the whole blog is about living with my health condition, but the form itself. I haven’t written a poem in many years so it was quite a challenge being asked to write one – just glad that I prepared in plenty of time and was able to write a decent attempt!

The prompts like always were a mixture of being, fun, challenging as well as being thought-provoking. One prompt I really enjoyed, but initially found very challenging was the post regarding Adversity (“The flower that blooms in adversity…”). I initially found it very difficult to write especially regarding when I bloom best. However, although I found it challenging, I thought in the end it was one of my favourite and best written post! I also loved the prompt which asked us to ‘spread the love’ and thank some of our favourite health activists; this was such a great opportunity for me to thank those who have supported me and helped me through some tough times with illness (Sharing the Love! I would like to thank…).

I would also thankful for the Wordless Wednesday posts, as it gave a break from writing long posts and was fun coming up with creative photographs and drawings to dictate something without using words! Would love to make this a regular feature but would need some ideas! If anyone has links or ideas to do this please comment below and share!

Least favourites? Perhaps some of the prompts that I had written about during previous writing challenges such as the post regarding caregiving (Carers, How to treat those you care for), and discussing favourite social networks (Why I Love to Tweet) to name but two.

Anyhow, regardless of the good and the bad through the experience of this writing challenge it was a challenge that I thoroughly enjoyed and look forward to taking part next year! Thank you WEGO Health!

What did you think of my posts for the HAWMC? What were your favourite posts to read? Any you didn’t enjoy reading? Loved to hear your views so please feel free to leave any comments/suggestions!

HAWMC 2013 Day 29: Celebrating Awesomeness!

2013-04-29T03:01:57-07:00

Today’s prompt reads as follows:

We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

This I have to admit is a difficult post for me to write as I am not very good at paying myself compliments. Often, I a self-deprecating and very rarely think about my positive qualities – I often have to ask people to help me pick out my best qualities as I have no clue!

Recently, I have started tapping into my creative side and making greeting cards. At first, I started making them for myself to give to relatives and friends during times of celebration. However, after taking them into my afternoon social group, I instantly had orders from the members asking if I could make some for them to give as cards. Not only do I find it very relaxing sitting down and making the decopauge cards, it also takes my mind off the pain I experience. I have had a lot of compliments from people regarding my cards; so at least other people think that it is something that I am good if I don’t always believe it myself! Here are some of the cards that I have made:

Writing is something that I love doing, and this blog has turned into a big passion of mine. I love sharing my experiences and thoughts with others, and there is nothing more satisfying as a writer than receiving comments from others and telling me that they enjoyed my writing and they were able to relate to what I wrote in that particular post. I have had the fortune to receive comments on my blog, Facebook or on Twitter how much people enjoy my writing, which means so much. Writing is something that I have always been good at, and so was the main reason why I decided to start the blog as a way of raising awareness of neurological conditions.

Another thing that I love is my breadth of my general knowledge! I love nothing more than playing general knowledge quizzes whether this is watching quizzes on television; playing board games such as Trivial Pursuit or taking part in a pub quiz. At my local group, one of my nicknames is ‘Quiz Bandit’ as I tend to know the answers to a lot of the questions asked, and many times have seen my team to victory!

So there are 3 things that I am good at! Took me a while to even come up with these – but in the end I managed it! So, what are some of the things you are good at, or love about yourself? As ever, please feel free to comment below….

HAWMC 2013 Day 28: You Must Follow These Brilliant People…

2013-04-28T03:01:14-07:00

Today’s prompt is as follows:

Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, bloggers, or Facebook pages.

I so wish that I could share some fantastic resources and tweeters who share the same condition in which I live, however, the condition seems to be rare and have yet to meet anyone with the same diagnosis. However, I have had the pleasure to meet some truly fantastic people through Twitter, and who often sends me words of comfort or support through my own struggles and have become great friends in the process. So, if you are on Twitter please follow them and find out for yourself how kind and beautiful they all are:

Image Credit: The Daring Librarian @ Flickr

Marissa Christina – @MarissaAbledis

Pamela Sloate – @dystoniamuse

Anya de Longh – @anyadei

Aisha Bukari-Clarke – @AishaJemima

Unseen Magazine – @unseenmaguk

Sarah Levis – @GirlWithTheCane

Chronically Awesome Foundation – @ChronicallyAFnd

Patients Association – @PatientsAssoc

Peggy – @moyamoyagarden

The Spin Sisters – @TheSpinSisters

I have met so many wonderful people on Twitter but I was only able to choose up to 10 to share with you today. For all those not included, know that I truly value your friendship and kindness you have shown me. Thank you x

Who are your top tweeters/bloggers/Facebook Pages? Please get in contact and share them below!

HAWMC 2013 Day 27: The Story of My Life….

2013-04-27T02:19:57-07:00

Today’s prompt is as follows:

If you wrote a book about your life, your community, your condition, or your health-activism – what would you title it? Come up with 5 working titles.

Perhaps someday I may write a book about my experiences with my condition; certainly as writing is something that I enjoy immensely. I am not sure whether the book will be of any interest to others however. So, what are some of the titles that I could call the book that would chronicle the condition in which I live and the experiences that I have had living with it. Let’s brainstorm:

Well, the first title that I have come up with is the title of this very blog ‘My Brain Lesion and Me.’ What a better title than that of the blog in which started me on the journey of writing and chronicling my experiences with living with the condition in which the book delves into. The book is also quite self-explanatory and informs the reader straight away about the theme of the book.

Another title that I have brainstormed is ‘A Medical Malady.’ I have chosen this particular title as because of the many generalised symptoms that the brain lesion causes; meant that the condition went undiagnosed for many years. For many years, I was sent to various specialists in many areas of medicine to try and get to the bottom of the cause of the severe chronic dizziness that I was experiencing. And when this didn’t occur however, I was labelled as suffering with an anxiety disorder, in which the doctors put all my symptoms as the result of this particular psychiatric diagnosis. I remember whilst at University and was undertaking a variety of medical tests and hospital appointments, after the dizziness became worse, a friend once said that I needed to see Dr. House from the television programme of the same name, as he would surely get the answers that I needed. I was a medical malady indeed!

An alternative title could also be ‘Fractured Storms’. I thought this was an interesting title and one in which is ambiguous; not letting potential readers in on the secrets that the book contains. I often will pick up books with interesting titles; titles that catch my eye and makes me wonder what the book could be about! The brain lesion is indeed similar to that of a fracture; of a scar lying within my brain stem and causing the ‘storms’ or symptoms that affect my daily life. The storms causing symptoms such as the constant dizziness, episodes of vertigo, as well as the spastic paraparesis affecting my legs which results in pain, weakness and stiffness.

Another working title that I have come up with is ‘The Life and Times of a Neuro Patient’. Again, this title instantly informs the reader of the subject matter of the book, and would be an instant interest for other neurological patients. After making contact with other patients with other neurological conditions, I have found that there are many similarities regarding our experiences regardless of our differing diagnosis. Very often people diagnosed with a neurological condition like me, have to wait many months before seeing a neurological consultant. Recently, I have had to be referred back to the neurological department of my local hospital because of deteriorating symptoms, and have been informed that I have a six and a half month wait to be seen. This however is not uncommon amongst neurological patients. How I wish that when I was first diagnosed that I could have read a book by someone who was also living with a neurological condition like myself; and whom also experienced similar problems that I was facing. I would have definitely bought a book that was entitled ‘The Life and Times of a Neuro Patient.’

And the final working title that I have chosen is ‘A Disequilibrium Life’. Again, as most of you know, the dizziness and balance problems have long since been with me; ever since I can remember I have been battling dizziness. Therefore, much of the hypothetical book regarding my life and my chronic illness would document the problems with dizziness, vertigo and balance, so the title should reflect this too.

So, what do you think of these working titles for the book regarding my life and battle with the long-standing brain stem lesion with which I live? Which title do you like best?

As ever would love to hear your comments/suggestions, so please get in touch and comment below!

HAWMC 2013 Day 26: A pain-free pass…oh what a joy that would be!

2013-04-26T02:03:32-07:00

Today’s prompt is as follows:

What’s a day that you wish you could have used a pain-free pass (either in the future or the past)? How would being pain or worry-free impact that day?

It is ironic that I should be writing this post on a day when the pain I experience is bad. Oh, how I wish that I could use a ‘pain-free’ pass for today, although perhaps I would prefer to save the pass for another time; perhaps a time in which a pain-free time would be beneficial. The group I attend ‘Life 4 Living’ encourages us to write a bucket list – all those little things that we would love to achieve before we die. Recently, we have had a couple of deaths within the group; which has reminded us how short and previous life can be, and as a result I would love to use a pain-free pass to be able to complete something from my own personal bucket list…

Recently, as some of you may remember from a recent post entitled ‘To Go or Not to Go‘ my parents and I are looking into possibly going on a cruise next year. It has been my dream to visit Italy for sometime, but because of my health, certain ways of travelling are unsuitable for me, such as flying or travelling by bus for example. Therefore, going on a cruise is the last option for me to achieve my dream of visiting Italy.

One advantage for sufferers of chronic illness of going on a cruise, which you are unable to get with other holidays, for example, is the times that you become unwell or pain becomes unbearable is that you can go straight back to your cabin with very little hassle.

However, if I were to use a pain-free pass, it would be on day when the cruise ship is docked in Italy itself, especially in Rome and Florence. Why? If I were pain-free I would go exploring and go sight-seeing within these beautiful cities without any pain and also the worry that pain will suddenly appear, spoiling the enjoyment of the day and making precious and exciting memories. I could go and visit the Sistine Chapel; the Colosseum and the Trevi Fountain as well all the other beautiful scenery and architecture within the beautiful city of Rome. Of course, a day out to a new city is complete with some retail therapy! And the chance to soak up a different culture; to experience authentic Italian food and ice-cream – and all for myself instead of hearing about others’ experiences of travelling or reading about it in books or seeing the sights on television. What a dream it would be!

How amazing would that be? A pain-free day; and a day free of any worries! A day in which I could spend it exactly how I wanted without the worries that chronic illness often presents in our lives. A chance to enjoy just a special day with family during a once-in-a-lifetime holiday without my condition getting in the way or spoiling it as often happens during my daily life. Now, we have to try and make it happen! Fingers crossed….

What would your ‘pain-free’ pass day look like? Share your thoughts below and comment! Always love to hear from readers…

HAWMC 2013 Day 25: What I have learnt from other Health Activists!

2013-04-25T02:11:47-07:00

Today’s prompt reads as follows:

Share something you learned from another Health Activist (that everyone should know!)

For this particular prompt; I didn’t just want to single out just one health activist because I have learnt so much from every health activist and blogger whom I have had the pleasure to come into contact with either through the blog itself or my Twitter account. Each of these amazing writers’ and health activists have so much knowledge to share to everyone. Obviously, the main advantage is that through reading others’ blogs, I have not just learnt their personal stories and whom they are as people, but have also gained a breadth of knowledge on a variety of different conditions.

However, by doing this and particularly after taking part in the ’12-12-12 Project’ over at Abledis.com and reading all the amazing stories of all the fantastic, and inspiring stories, it dawned on me how similar the experiences are for everyone who are chronically ill. Regardless of the diagnosis; there are common themes that seem to be universal for everyone battling chronic illness; examples of these include:

Loneliness
Fatigue
Pain
Sadness/depression
Frustration
Lack of understanding from GP’s
The same old responses by others’ such as “But you don’t look sick!”

Before starting on this blogging journey, I often felt lonely, isolated and down regarding my diagnosis and not finding anyone else with the same diagnosis. However, this is not the case anymore, as I found a large number of new friends; all with different conditions or disabilities. Despite that, however, I have found we still have so much in common regardless of our diagnoses, and the support and camaraderie have been amazing and have gotten me through all the bad days; and the times where I have been low. Christine Miserandino and the ‘Spoon Theory‘ is an excellent example, how a simple analogy can be used to describe the experiences of chronic illness for many – regardless of people’s diagnoses, the ‘Spoon Theory’ is one which everyone living with chronic illness can relate to.

So, if I was to share any advice to others who may have been recently diagnosed and are feeling low, and perhaps are lonely and isolated, then I would tell them don’t be – there are plenty of support online, on Facebook, or Twitter that can help regardless of gender, location, race, nationality or even diagnosis! Seek out all ‘spoonies’ and gain support from some amazing and caring individuals!