Chronic Illness Archives – Page 37 of 89

In Chronic Illness

Back from cruising…but writing hasn’t stopped!

May 24, 2014 No Comments

Welcome to all readers new and old.

Sorry for the lack of content recently, but as some of you may remember I wrote a post as part of the WEGO Health HAWMC on how I was about to embark on a cruise; the first holiday that I have been on for some considerable time ( you can read the post here). Anyway, yesterday I arrived back from that very cruise. I would love to say that the experience was amazing and completely enjoyable, but unfortunately the neurological condition and the symptoms that go along with that, very much got in the way and made the holiday experience very difficult at times. I will write a post all about my personal cruise experience in due course, but at the moment life is busy with unpacking and sorting through all of my many emails!

Anyway, just wanted to make you all aware that again I have contributed to the wonderful ‘The Pillow Fort Magazine’, which is a fun, positive and inspirational digital publication for young people suffering with chronic illness. The premise of the magazine and the wonderful community that the editor Lizzy has established is to provide a safe, positive and fun sanctuary for those battling chronic illness to be uplifted, inspired and make the experience of living with illness a little more fun, or in the words on the website ‘make chronic illness suck less.’ Inside the magazine there are approximately 20 submissions including written articles and beautiful photography from a variety of young spoonies battling with different chronic conditions (of which I am one!). Each page is beautifully designed as well as being unique. It is a wonderful magazine, and one which is particularly uplifting on those bad days stuck in bed. The articles are beautifully written and thought-provoking in the sense that it makes you look at living with chronic illness in a different way. As an example there is a wonderful article on the similarities between various superheroes and those living with chronic illnesses.

Here is a sneaky peek at my pages in the magazine!:

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To read more of my article in the new issue of the magazine and be generally uplifted and inspired by each and every contributor then you can go and get your own personal (digital) copy of the magazine here

And please get in touch and let me know what you think of my article or on the magazine in general! Feel free to leave any comments or suggestions in the comment section below…

In Chronic Illness

The end is here….

May 1, 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 final prompt reads as follows:

You did it!…You’ve crossed the #HAWMC finish line. Recap the past month for us. What did you enjoy, what didn’t you enjoy? Favourite prompt?

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Well, I have made it!! I have managed to write ALL 30 posts in 30 days! And what a journey it has been – one full of ups and downs. Celebration of triumphs over certain neurological symptoms in the post ‘I went and I conquered!‘ and reflecting on the tough times as a result of chronic illness in posts such as ‘Dear Rhiann (at age 16)‘ and ‘Escaping the monotony and boredom of chronic illness…‘. Some posts were deeply personal and regarding my own life and experience with chronic such as the letter to my younger self, ‘Reflection of a life with illness…‘ and ‘Lesson Learned! Don’t walk down the stairs with trembling legs…‘ whilst other posts explored what is it like to live with a chronic illness in general in posts such as ‘Clichés often heard when dealing with chronic illness…‘, ‘The representation of chronic illness on TV…‘ and ‘Rules for dating a Spoonie…‘.

Although there were a lot of difficult aspects of completing such a monumental task such as writing everyday for 30 days, it has been a challenge that I most enjoyed. The challenge allowed me the opportunity to focus on something other than on my symptoms and feeling unwell; it gave me focus and also gave me a purpose. Another aspect of the challenge that I also enjoyed was the opportunity to connect with other bloggers and learn more about their lives and experiences with chronic illness. Although many of the blogs that I read or have read during the course of this writing challenge are about all different types of chronic conditions, it is surprising therefore reading others’ experiences and thoughts regarding living with chronic illness and seeing my own reflected in their words. It shows that we don’t have to find other people with the same diagnosis to find support and a connection with other patients. I have particularly enjoyed reading the wonderful and eloquent writing of Jessica Gimeno on her lovely and inspiring blog ‘Fashionably Ill: The Sick Woman’s Stylist‘. I have also had the pleasure to meet a new blogger named Kerry Wong who has a wonderfully positive and inspiring blog named ‘Float Like a Buttahfly‘ and finally I have discovered a very informative and interesting blog about living with an Autistic Spectrum Disorder at ‘What’s the ASDeal?‘

I didn’t dislike any part of the challenge, however there were aspects of the month that were incredibly difficult, such as dealing with severe symptoms whilst needing to write posts. Not easy when living with fatigue and you are constantly tired. To help this, I planned the posts ahead of time, which came as a real help especially as some days I was unable to get out of bed due to the severe weakness in my legs and as the posts for those days were already written I was just able to proofread them and then hit the publish button from the comfort from my bed. In addition, some of the posts were also similar or even exactly the same as prompts from previous years of the Health Activist Writer’s Month Challenge. An example of such a prompt is the ‘5 Challenges and 5 Small Victories‘ and the reasons for why we write. It was therefore difficult to find new ways of answering these particular prompts without repeating what I have written before.

I have to admit that I am not able to choose a favourite post as I enjoyed writing them all. The one post that did get the most traffic though was ‘Clichés often heard when dealing with chronic illness‘ so perhaps that was the readers favourite post. I did particularly enjoy the prompt that asked us to write an acceptance speech – I really liked writing the post as it allowed me to thank everyone who has supported me and helped me during my journey from diagnosis of the neurological condition to where I am now. I even showed this post to my Mum whom I mentioned in the acceptance speech, and she even teared up a little so it must have been well written and a wonderful post. Which post from the last 30 days were your favourite? I would love to hear your thoughts on the whole challenge! Please feel free to add any comments, messages or suggestions below…

In Chronic Illness

Wordless Wednesday: Hope exists even in darkness…

April 30, 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:

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 viewer

In Chronic Illness

Make plans…our bodies laugh

April 29, 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:

Summer Lovin’…Summer is coming up. What plans do you have? Any family vacation? What do you look forward to in Summer 2014?

I have to admit that I currently have no plans for the Summer of 2014. Why is this? For starters, in my opinion making long-term plans whilst living with a neurological condition or chronic illness like myself, can be extremely difficult. It can be extremely difficult because everyday is an unknown. We do not know what each day will bring; how severe the symptoms associated with our condition and how we will feel from one day to the next. Sometimes especially when experiencing a bad flare in our conditions, we do not know how we will feel one minute from the next even, and so therefore making plans can often be problematic as there is always the worry that we will need to cancel. And cancelling plans not only disappoints those with whom we have made those plans with, but also leads to disappointment for ourselves. You know that phrase “We plan, and God laughs” – never has a saying been so true for life with chronic illness, except that it is our bodies that laugh and not God.

"People plan and God laughs" or the Spoonie equivalent is "We plan and our bodies laugh!" — “People plan and God laughs” or the Spoonie equivalent is “We plan and our bodies laugh!”

By the time that Summer arrives of course, I would have already have been on my holiday. The first holiday in fact that I have had for several years. At this very moment, I am a mixture of being very excited but also very nervous. Living with my neurological condition can be very difficult, and therefore I realise that going on holiday may at times be very difficult due to my symptoms such as dizziness. However, as I am going on a cruise, it has a variety of benefits, such as being able to set the pace for the holiday itself. I can be as active or passive as I want; and in addition if I suddenly become unwell, I can simply head straight back to our cabin without the hassle of travelling back to a hotel from the beach or from somewhere further afield. Also, being on a cruise ship could also lead to more independence away from my parents as I can (with hope) wheel myself around to areas of the ship where the activities that I want to take part in are held. For example, I have learnt that often cruise liners hold art and craft sessions, such as lessons in jewellery making or scrapbooking and so as I have found art and crafts to be useful in distracting myself from symptoms such as dizziness and chronic pain and so therefore may be beneficial for me to attend such onboard activities.

I also know that it may take a while to recover from the cruise and from all of the added activity that comes from being on holiday. The start of the Summer therefore may be recovering from the holiday. Unfortunately, the Summer may also see more hospital appointments as am waiting for an MRI to be conducted before seeing my consultant again.

Although I don’t have definite plans for this Summer, I do hope however for more lovely, relaxing and fun days out with my carer and enjoy the most of the warm weather. Day outs to nearby tourist attractions, days out shopping or simply a trip to our favourite coffee shop, I don’t really mind as long as the Summer isn’t spent in my house with only my symptoms for company.

In Chronic Illness

Dear Rhiann (at age 16)…

April 28, 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:

Dear 16-year-old-me….Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?

This particular post is one which is both extremely personal and difficult to write. Life for me was extremely difficult for me when I was 16 – I didn’t really have any friends, I was experiencing depression and anxiety as well as living with symptoms of the neurological condition even though it was undiagnosed at that time. As you can imagine was not a very happy time for me at all. Now, I look back at that time in my life, I realise how much I have learnt about myself and life in general since then and furthermore how far I have come since that difficult and dark period in my life. And, so there are so many lessons that I would share to my 16 year-old self, given the chance. Here is a letter that I have written to my younger self.

Dear Rhiann,

You may not believe this but this letter is from you but a you from the future. Yes, that is right, as I am writing this I am actually 28 years of age and the year is 2014. I am actually writing this letter just less than two weeks before going on a cruise around the Mediterranean – yes, that’s right – I (and the future you!) will finally get to experience the beauty and history of Italy; a place which I remember you have always wanted to visit. So, that is one lesson that I would like to share with you – that although you may not realise it now, and despite how life is difficult for you right now, there are still many good things that are and will happen during our lifetime. That even what may seem completely impossible right now, because of the way you are feeling and the severity of the dizziness that I know you are experiencing, the impossible is still within your grasp. The trip may not be easy, and will at times be extremely difficult but I promise it will be so worth it.

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I know you are going through a very painful and difficult time in your life, having formally been diagnosed with depression, and having to start taking antidepressants a couple of days before your sweet sixteen. Writing this, I remember how sick they made me feel for the first couple of weeks, only being able to eat very little before I felt full. I also remember the incredible loneliness I felt back then, especially during school, having no friends and walking around in a daze, trying to pass the time until lessons started back after lunch. But I want to reassure you and let you know that things will get better and there is so much more in life for you to enjoy and experience.

I also wanted to share a secret with you – the dizziness that you are experiencing? It’s not in your head, and you are certainly not imagining it as some doctors have led you to believe. Because of the rules of letting me write this letter to you, I am not allowed to tell you what is wrong, but there is an explanation for it. So, please don’t listen when the doctor’s keep telling you that the dizziness is psychological and a result of an anxiety disorder. Advocate and fight for yourself and your health instead of being timid and compliant like we are, as well as putting doctors on some sort of pedestal because they have had professional training and “they know what they are talking about”. One thing that I have learnt through years of navigating the medical field is that doctors are not always right; they are not infallible and they make mistakes. Listen to that voice inside your head that knows that something is wrong and don’t give up on finding answers to the reason behind the dizziness. Please keep fighting for answers. And don’t give up and lose hope that the answers will never come, because they do – it might take some years in the future but they do come. Trust me.

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I cannot say it isn’t going to be easy, or that it’s going to get better and you are going to live a full and normal life, but I believe that you are stronger than you think you are…and you can handle a lot more than you think you can…

And the loneliness you feel – it will go away, you are going to find people who will accept you for who you are, friends that are going to support you in times of need. I remember at sixteen being teased and ridiculed for who you are– just remember that no-one has a right to make you feel that you need to apologise for who you are. Don’t be ashamed to be yourself… You will find people who love you for exactly who you are and make you feel important and valued. It won’t happen overnight but those people are there waiting to find a wonderful friend like you are.

Before I forget – the heaviness and stiffness that you feel in your legs? The feelings that have been with you, since you can remember? Well, those feelings, they aren’t normal and isn’t something that everyone experiences…Maybe mention this at your next doctor’s appointment.

And good luck for your GCSE exams in a couple of months – not that you need it, you are going to do just great. You probably won’t believe it, but you will. Stop doubting yourself. Next stop will be your A-Levels, and then who know maybe even to University 😉

Take care of yourself and cherish this letter – keep it as a reminder for hope and the knowledge that life will get better and that everything is going to be OK.

From

Rhiann (aged 28)