Chronic Illness Archives – Page 41 of 89

In Chronic Illness

I went and I conquered!

April 12, 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:

Health Activist Choice Day 1…Write about what whatever you want today!

I thought long and hard about what I wanted to write about for today’s post. As we all know living with chronic illness is like riding a rollercoaster with a number of highs and lows; and unfortunately many of these are lows. However as much as I struggle living with my neurological condition, I try my best to remain positive despite it, and so therefore I would like to write about an achievement that I have finally managed to accomplish. As most of you may know, due to my neurological condition (a long-standing brain stem lesion) one of the main symptoms that accompany the said condition is severe and constant dizziness.

The dizziness, as we have found out is triggered by certain visual stimuli, such as large stores with its open spaces, high ceilings and fluorescent lighting. This therefore, restricts me into where I am able to shop, for example the clothing store Next, which also happens to be my favourite clothing store. A few years ago, a Next opened up in a local retail store near to where I live, however, I was unable to shop in there because the store itself would trigger the dizziness and vertigo, and as a result make me feel very unwell. When my carer started working for me, approximately fifteen months ago, we made one of my goals to be able to go into the store that was one of my favourite retailers. Over the months we have tried and tried to no avail; sometimes we got as far as the door but the dizziness became so intense that we had to go straight back to the car.

However, last Thursday on a whim I decided that we should give it another try. As we are due to go on holiday soon, I still need some new clothes to take away with me and seen some clothes that I liked whilst browsing their website. I have to admit, I love browsing their website and their delivery options are fantastic, for example you are able to order certain products by 9 PM and have them delivered the very next day. However, there is a delivery charge, and when you order as much as I have done over the years, it really adds up.

I did it! I managed to go into store, and what’s even more is that I managed to shop and browse their lovely clothing and accessories for nearly an hour! And even managed to buy a couple of items! I cannot describe the sense of accomplishment that I felt when I paid for my items! I actually did it! I defeated the dizziness and vertigo; pushed through and won. I admit, there were a couple of moments that I nearly collapsed, and even went back to the car at one stage; and apparently at one point I even went green when the dizziness became so severe it made me feel very sick. The trembling in my legs was also quite severe, but I took along my wheelchair which made it much easier; and even when I was just pushing the wheelchair it have me a sense of stability, and at least I didn’t have to contend with the worry of my legs collapsing beneath me.

A gorgeous top that I fancied whilst browsing the Next website

The style of hat that is most effective in lessening the severity of the dizziness

I really have to thank the entire staff of Next at the Talbot Green Retail Store, who really made the experience much easier and were very helpful towards me and my situation. One staff member noticed how unsteady I looked and offered to open up one of the cash registers to save me from queueing. And the members of staff who diligently looked for items that I was looking for; going up to the stockroom to show me some of the options that were in stock. It is fantastic customer service that really helps when suffering from a chronic illness or disability and more than makes us more likely to return.

So, I managed to conquer a very debilitating symptom and managed to physically shop in a store which I love. Now, I have done it once, I look forward to many more visits to Next…

I hope you have enjoyed the new blog post! Have you conquered any fears or battled through severe and debilitating symptoms to accomplish something that you have wanted to for so long? As ever I would love to hear your comments and stories of triumph over our symptoms and conditions!! Feel free to share below in the comment section…

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

Hi Ho! Hi Ho! It’s off to work we go (Spoonie Style)…

April 8, 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:

Off to work!…What advice would you give to those on the job search? How do you juggle your job and a chronic illness? Any tips for the interview?

Looking at all of the prompts for this month’s writing challenge, this is probably one of the more difficult blog posts for me to write as I myself am unable to work because of my condition and therefore have no experience of juggling working and a chronic illness. So, as a result I have researched online and have found some useful tips for looking for work whilst chronically ill as well as juggling work and illness.

Job Hunting and Chronic Illness:

Get into a routine: Whilst being unemployed, and especially whilst living with a chronic illness, it is often easy to become stuck in a rut, such as sleeping in late and not having a schedule. However, if you are at the stage where you are able to start thinking of getting a job despite chronic illness, it is therefore advisable to practice getting into a regular routine beforehand so that you do not find it difficult getting up early and so on
Re-examine your CV: Living with a chronic illness really limits us in what we are able to do; however it also provides us with attributes that we might not have possessed before. Therefore, make sure that your CV currently reflects your current abilities and attributes that you can bring to a job position. Stress your accomplishments to show that you are more than your illness.
Do your research: With my condition, a lot of places such as buildings with high ceilings, or those with wide open spaces can make my dizziness worse, and therefore there are certain working environments which would not be suitable for my particular situation. For example, being in a call centre with the noise and open spaces would make the dizziness extremely severe. Therefore, for me and those in a similar situation to myself, it may be advisable to research the place of work and perhaps organise a visit to see if the place would be a suitable place of work. Or perhaps enquiry whether they could make certain adaptations for your needs, for example, I often feel better if I am close to a wall; near the edge of the room where it is usually quieter and with not as much visual stimuli occurring

Working with a Chronic Illness

Provide the basic information to employers regarding your health condition so they are to provide you with certain accommodations: Depending on your personal situation, if there is a need for you to work or if you are simply able to work but need certain accommodations to make this possible, then you would need to discuss this with your employers. For example, you may need a different work schedule to accommodate treatments, or frequent breaks because of fatigue and so on.
Prioritise work tasks: If you are struggling at a certain point, and you feel that you may need to take time off because of your condition then perhaps it would be advisable to prioritise your work, and complete tasks which are urgent before those which are less important so that you are able to be productive despite living with a chronic illness. Make to-do lists, for example, as many illnesses causes memory problems. , and
Maintain a good work/life balance: Many jobs nowadays require a lot of energy, and therefore working whilst living with a chronic illness may use a lot of spoons. If there are a lot of deadlines due, then you may find that when getting home from work, as a result you may not have the energy to do anything else. Therefore, pace yourself at work, perhaps ask for certain accommodations that ask for a lesser workload so that your life foes not revolve around work and your chronic illness.