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In Chronic Illness

Rules for Dating a Spoonie…

April 11, 2014 No Comments

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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:

Date Night…We’ve seen some posts from Health Activists on dating tips when you have a chronic illness. What tips do you have for those looking for the one fish in the big pond?

This, I have to admit is another difficult topic for me to write about. Dating isn’t an area which I have a lot of experience in. Due to the neurological condition that I live with, and the symptoms such as the severe dizziness, weakness and trembling in legs and the many falls that is a daily occurrence, it therefore, means that I am unable to go out on my own. As a result, this can make it very difficult to be able to meet anyone, especially as I very rarely go out in the evenings or on nights out because of the crippling fatigue that accompanies my illness. How on earth are we able to date when dealing with such intrusive symptoms? Let’s face it, dating is a difficult subject no matter what your personal circumstances are, but factor in a chronic illness and it compounds the situation further.

Since the age of the internet, I suppose it has made dating easier when you are housebound a lot of the time, with the large number of internet dating sites out there. However, with them comes a whole host of different problems such as when to divulge information regarding diagnosis, as well as not knowing exactly who you are talking to online. Attending groups based on a specific interest such as a local book group, for example, can also be a great ways to meet other people who share the same interest and may even find the one.

So, when we do eventually find that perfect someone to date; what are some options for low-key dates for when fatigue and other symptoms are particularly bad? Here are some lovely options that I have stumbled upon whilst researching this very topic:

Indoor Picnic: Going out for dinner is something that I love to do; however, on occasion I have had to cancel because I have felt too unwell, weak or even been bed bound to attend. So, how about having a picnic with your date inside the house, or even the garden if you have one. It also means that you can wear comfortable clothes, or even pyjamas and do not have to be self-conscious about your appearance; as well as enjoying quiet conversation in a relaxed environment
Early Dinner: I always find that my energy levels significantly drop just after 7 in the evening, so therefore, going out for a late dinner date, would not be very feasible for me, and much prefer going out earlier in the evening where it is often much quieter and you can even arrive back home in time for your favourite shows! And another benefit that you may even save money by going for a meal early by taking advantage of early-bird menu options!
Movie Night: As regular readers of the blog know, I find it difficult being in large open spaces, with high ceilings. This therefore restricts where I am able to go, and am often unable to go to cinema to see the latest releases as they often make me feel very nauseous and increases the severity of the dizziness and vertigo that I experience. So, how about making a movie date night right in the comfort of our living rooms? As an alternative, each could pick their favourite movie and then share them with the other, discussing what makes that particular film so brilliant. Enjoy with ice-cream and popcorn and settle beneath a warm comfortable blanket. And as a bonus, you don’t have to be disturbed by the rustling packets of other people’s snacks or be blocked by the head of another movie-goer!
Game Night: They may have am unfair reputation for being old-fashioned and dull but games may be a great distraction from chronic pain and other severe symptoms that you may be suffering from. It can also prove a unique bonding experience and you may be surprised what you can learn about each other by playing games, specifically those which require tactics. My personal favourite is Trivial Pursuit! Or you can always complete a jigsaw puzzle together and time how long it takes you to finish it.
Personal Book Club: If like me you love books, you could always rope your partner into reading a particular book that either one of you love, and then spend time discussing that particular book. I love discussing books with others as often you find a new perspective on a loved book that you might not have even considered before, but what is also great, that you also gain and insight into another person’s insights and views of a variety of different topics depending on the book choice.

What is important, however, is no matter how you meet your potential partner, is that they except you for who you are. Chronic illness can be extremely difficult to live with, and not just for the person living with the condition. Finding a person who accepts just that, are very special. And the person has to deal with not just the condition but also understands the limitations and restrictions that it places on our lives, so our prospective partners needs to understand and accept that our date nights may not constitute the conventional and clichéd dates, but the need that we sometimes have to be alternative in our choices and find creative and low-key dates for when we are experiencing a flare in our conditions.

I would love to hear all of your thoughts! What are your experiences of dating with chronic illness? How did you meet your partner? How are some of the ways you spend date nights when you are feeling particularly bad and unable to go out? Feel free to share your stories in the comments section below!

In Chronic Illness

Acceptance Speech: I would like to thank…

April 10, 2014 No Comments

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 prompt reads as given:

And the winner is…You! You just won an award and are on stage, holding your trophy. Write an acceptance speech. Who do you want to thank? How did you get to where you are today? Don’t worry, we won’t rush you off the stage!

Wow, this is an amazing honour and so I think the first people that I need to thank is those who voted for me, as without them I would not be standing here today.

I would also like the opportunity to thank my family, especially my parents who have gone beyond the parental duty in their support that they shown me during the journey through illness, diagnosis and life after. I would like to thank them for all their help and care over the years. For picking me up when I have fallen, for taking me to every hospital appointment, and just by being there for me during the bad times. Just for being your caring and wonderful selves. I appreciate you both so much and cannot express how much you both mean to me.

I would also like my wonderful and supportive friends who I am very grateful that I found, particularly Claire, Aisha, Anya and Hayley. All of your messages, cards and gifts have meant the world to me, and have helped me during the bad times. You girls have shown me what friendship means and also that I am not alone in the journey through chronic illness. To Claire, thank you for all of the enjoyable and fun nights out which we have shared, they have been exactly what I have needed to take my mind off my condition and the symptoms, as well as the opportunity to have a break from being inside the house and enjoying lovely food!

My friends are definitely like stars...they make my life shine a lot brighter — My friends are definitely like stars…they make my life shine a lot brighter

To Aisha – I cannot find the words to describe exactly what you mean to me. Finding you has been like finding a diamond. During my childhood and adolescent, and even into adulthood, friends have come and gone. It felt as they could not accept me as I am, and therefore I am so grateful to have you in my life and know that I have friend that I can always count on during the good times and the bad. You have become more like a sister to me, and I look forward to our many years of friendship.

Anya, thank you so much for all of your support; not just for me but for my blog also. We both connected with each other through our blogs; and you inspire me with your eloquent writing and all of your amazing work in the field of self-management.

And finally, to Hayley who has worked tirelessly to create a fantastic community for those affected by neurological conditions; I am so blessed to have found a place where I belong, and thank you for making me a part of it and giving me a sense of purpose. And to every person who has contributed to Neuro Nula, whether it be through sharing your own personal experiences and stories of living with a neurological condition or connecting to the community via Twitter, each and every one of you are inspiring; thank you for shining a light on what it is to live with such a condition as well as making me and other’s like me feel less alone.

I should also thank all of the readers of my blog ‘My Brain Lesion and Me’. Thank you everyone who has taken the time to read, share and comment on my posts, as well as all of my lovely and loyal Twitter followers. Thank you for your kind and generous words, and a special thanks to everyone who has sent me words of encouragement and support during the darkest moments, or just have taking time out of their day to ask how I am feeling and generally making me feel less alone in the world.

I must also thank to all of the doctors and consultants that I have seen over the years; unfortunately there are too many of you to mention personally, but those doctors who believed me and diligently looked for the underlying cause of my symptoms. For so long, I believed that I was strange; that everything I was experiencing was in my head and after all of you took the time to perform tests and take a thorough history, all of you took some part in arriving at the eventual diagnosis. I now know that it is not in my head; and that is down to all of your hard work. Thank each and every one of you for your patience, diligence and support. We now know that there aren’t many options in terms of treatments; no cure, but that does not stop you trying for me and attempting to give me a better quality of life.

And lastly a thank you to my condition. Yes, it may be strange thanking something which makes my life extremely difficult, and as a result have to live with such severe symptoms on a daily basis. However, despite this I would like to thank the neurological condition for making me stronger; for making me aware that with perseverance I am able to overcome obstacles and challenges that are placed in my way. I have found an inner strength, that I didn’t know I possess and perhaps if it wasn’t for this condition I would not have found the things that I am good at, such as writing.

Each and every person I have thanked has shaped the person I am today, and without all of you I would not be standing here today.

In Chronic Illness

Wordless Wednesday: Spoons for a Spoonie…

April 9, 2014 No Comments

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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 prompt reads as given:

Wordless Wednesday: We all know a picture is worth a 1.000 words. Post/share a picture that relays a message or story to the reader.

In Chronic Illness

Writing for my health…and my life

April 7, 2014 No Comments

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.

In Chronic Illness

A Perfect Sunday Dinner Party …

April 6, 2014 No Comments

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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:

Sunday Dinner…Who are 5 people you’d love to have dinner with (living or deceased) and why?

I don’t know about all of you, but Sunday Dinners are possibly the best family dinner of the week. Every Sunday, my small family and I make the effort to sit around the dinner table and eat our dinner together. So who would be my favourite dinner guests that I would enjoy a lovely Sunday dinner with?

As a Sunday dinner is a time to spend with people who are important to you, I have therefore chosen the following people:

My best friend Aisha
Another great friend Anya (blogs over at ‘The Patient Patient‘
Another great friend I have made along the way of my journey with chronic illness Hayley who has set up the fantastic community over at ‘Neuro Nula‘
My Mum
A great friend Claire who I regularly see IRL (in real-life)

A lot of people, I am sure would choose favourite celebrities whom they admire or those who they find attractive, I however, wanted to choose people whom I know and have supported me throughout my journey with illness.

Each of the people on my list above, and have all helped and supported me in very different ways. Of course, my Mum is a person whom I see everyday, and share many meals such as Sunday dinner. However, she is one person whom I would immediately choose for my dream dinner party, as she is a person I adore and admire. She is a fantastic Mother, and a person who always supports me in everything I do, as well as doing things to help me when my condition is very bad, and does so with no complaints. But more than that, she is a fun and wonderful person.

Mum is a wonderful carer who always looks after me; even sometimes neglecting herself

Aisha, Anya and Hayley are all people whom I have met on Twitter, however, although we have no met in real-life (but would love to if the opportunity arose) it does not make them any the less great friends. All these girls have experience of illness themselves, and so they are a fantastic support system to have in place. But most of all, I really appreciate the support that they have shown, and the friendships that we have developed mean the world. Aisha is the most amazing friend that I have ever known; despite living with chronic illness herself, she nevertheless always makes the effort to check in on me to see how I am feeling, and is constantly thinking of ways to ease the symptoms that I am experiencing. Furthermore, I will never forget the most beautiful bouquet of flowers that arrived at my house on my birthday from her. These flowers instantly put a smile on my face and made the day so special. I cannot express how much she means to me.

Beautiful flowers from the most wonderful friend :) — Beautiful flowers from the most wonderful friend 🙂

Anya is another wonderful friend who has always supported both me and this blog; and when I am experiencing a bad flare in my condition she sends me a lovely message on Twitter. Receiving a message on the bad says really helps, and although cannot ease the symptoms, it does however remind you that you are not alone in this journey with chronic illness. And furthermore, I will never forge the lovely cards and packages that have arrived unexpectedly on my doorstep – a lovely gesture and something which always brightens the day and puts a smile on my face.

Then there is, Hayley, whom I have gotten to know through her project organising a community for those with neurological conditions. We have been friends for a short time, but I will always remember the support that she has shown in not only me but also the blog and my writing in general. Furthermore, she has also trusted in my judgement and asks my opinion on aspects of the Neuro Nula community, and has trusted me in the social media aspect of the community. She is a friend that has made me feel valued given me a purpose in life, and for that I can never thank her enough.

And finally Claire – she has been the most wonderful and generous friend. For example, she invited me to stay with her and her family whilst my parents were away for the weekend. Furthermore, I will always cherish our nights out, mainly to Harvester’s and the wonderful meals out which we have shared. Often, these meals have come at exactly the right time; when my life with my condition and have been tough, and just being able to get out of the house, with a fun and supportive friend has been exactly what I have needed. Me and Claire share such a great laugh when we go out together, and really appreciate the ability to do so and be able to forget all my troubles and to some extent the symptoms that I live with, even for a short time. Thank you Claire.

These five women mean the world to me and there is no one else in the world who would make a dinner party more wonderful than them ( no, not even Tom Hiddleston!).