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 on given prompts.
Saturday 25th April: Word Cloud
Use Wordle to make a cloud full of words that come to mind when you think of your blog, health condition, interests or community. Pro Tip: Use a thesaurus to make the branches of your ‘tree’ extend further.
Well, again this has been a post that I have completed before.
In previous years, I have used the opportunity to share all the words that I associate with myself and the neurological condition that I live with.
This year, therefore, I have decided to share the positive words that I personally associate with the spoonie community.
A community that I have personally been involved with for the past three or four years.
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 on given prompts.
Thursday 23rd April: Health Activist Choice
Write about whatever you like! Got a great story, opinion, or tip to share? Tell us here.
On days like today, when we are giving free rein to what we can write about, it can be difficult to know what to say.
Add, a very bad day because of debilitating symptoms and it’s even more difficult.
I looked through books and pages on the internet, but due to the way I was feeling, all I really wanted to do, was to throw on a pair of pyjamas, crawl into bed and stay there for the foreseeable future (or at least until the symptoms subsided to a manageable level).
And then it hit me! Why not write a post about pyjamas?
In my opinion, pyjamas are very often the top of a spoonie’s wish-list. In my experience, when I am doing some online shopping, or on the rare occasions I venture into clothing stores, I am always browsing the nightwear section and lusting after more lovely and comfortable pyjama sets.
And why is this?
As a spoonie myself, it often seems that when I am experiencing a bad flare in the severity of my symptoms, as I am experiencing currently, then I spend a lot of time wearing pyjamas.
Even when I haven’t worn pyjamas for the entire day, I still like to get changed into mine straight after dinner! My perfect day would involve wearing pyjamas whilst enjoying a film and munching on some popcorn! Bliss!
Pyjamas, you could say are the uniform for the chronically ill! There are several different reasons for this:
The fatigue is so bad that we do not have the energy (or spoons) to get washed and dressed
They are so much more comfortable and comforting than regular clothes
They are easy to put on and are warm
They are fun!
Fashion bloggers are always providing us with new inspiration on the latest fashions and advising us what to buy. But, unfortunately for spoonies, pyjamas are often left out, so I thought I would share some of my favourite pyjamas:
Duvet Day Pyjamas – Next £26
These sum up the spoonie lifestyle brilliantly, don’t they? Everyone needs a duvet day sometimes, but these days are much frequent when living with a chronic illness. Perhaps a pair to wear on bad days that tell friends and family that you are struggling.
Stripe Slogan Pyjamas – Next £18
I love these PJ’s as soon as they saw them as it immediately made me think of my cruise that we are going on in September! And the slogan provides a little bit of positivity which is very much needed during a flare or relapse
Butterfly Print Pyjamas – Next £16
I could not resist adding these as they have butterflies, which as you all will know by now is one of my favourite things!
Florence + Fred Butterfly Print Pyjamas – Tesco £10
Need I say any more? And with ‘Do Not Disturb’ adorning the top, it’s a great way of telling people to stay away when life gets tough (know how sometimes we need to be left alone and be by ourselves when things are really bad).
F + F You are My Sunshine Pyjamas – Tesco £10
I saw these and thought they would be a lovely gift to put inside a care package for a person with chronic illness.
Very practical as PJ’s are always desired and needed when living with a chronic illness, but also remind them that they are loved and well-though of.
Those are some of my favourite pyjamas that are out there at the moment – what are yours? And you love pyjamas as much as I do? Would love to hear your thoughts!
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 given prompts.
Wednesday 22nd April: Hobbies
Running and 3PM dance parties are some of our favourite hobbies at WEGO Health. Tell us, what are YOUR hobbies? Love to crochet? Can’t stop collecting rocks? Take photographs of everything? Share your favourite past times.
Sitting here preparing the post for today, I feeling particularly bad due to the symptoms I experience as a result of the brain stem lesion. The dizziness and vertigo are making it difficult to do anything due to the severity, and the trembling in the legs is so bad that it has already lead to several falls, and it’s only early afternoon.
Today’s prompt above asks us to write a post about our favourite past times that makes us happy and provides us with a respite from life with chronic illness. This is a post that I have already written during a previous #HAWMC and which you can read here.
Instead, I have decided to write a post about the little practices and routines that help me during a particularly bad flare. By doing so, I not only hope to help others who may find comfort in these during their own relapse, but also by reminding myself of the little things that give me comfort and pleasure even during the bad days, I can also help myself in the process.
An important aspect of living with chronic illness, is in my opinion, having your own personal sanctuary; for me, this is my bedroom. My little haven where I can go to escape from the stresses of everyday life, and where I can receive comfort when chronic illness is beating me. It is also an homage to me, filled with everything I love.
I love butterflies, as they are a symbol of hope and change, and as a result there are a lot of decorative touches with butterflies throughout my room. The space therefore, for me is not only comforting but is also a space where I would love to spend a lot of time, which for someone living with chronic illness is vital. Little touches such as soft and luxurious cushions also gives comfort for the times when there is a need to stay in bed for long periods. I have also added things like inspiring quotes and affirmations throughout my room, cards pinned to my positivity board, prints hanging on my wall, or on little trinkets to keep in my comfort box. Including these affirmations and positive quotes in my personal space, is a reminder that despite the struggles faced as a result of chronic illness, things however will get better.
Some inspirational quotes
Furthermore, living with chronic illness and as a result spending most of the time at home can lead to feelings of isolation and loneliness. Making new friends and maintaining existing friendships can be difficult. As a result, I have used the internet and social media to meet other people also living with chronic illness, and have even made several pen pals. Writing is something that I love, and so using this hobby, I write letters and cards to others who are also struggling in the hopes to help lift their mood. By helping someone else, it also helps to lift my spirits also, and is reciprocated by lovely and thoughtful cards dropping on to my doorstep.
When it seems that chronic illness is controlling my entire life, and due to the severity of my symptoms as mentioned above, a lot of time is inevitably spent in the bedroom, lying down and trying to find any relief. During these time, I find that entertainment is a vital tool, not only keeping myself occupied but also to distract myself from symptoms such as pain, dizziness and trembling in the legs. I often find solace in various films and TV shows on streaming services such as Netflix and Amazon Prime.
Recently, I have loved watching episodes of ‘Once Upon A Time’, often watching several episodes concurrently. During times of painsomnia (insomnia as a result of pain), I also find watching films or TV series on my tablet to occupy my nights without disturbing anyone else! Books are also fantastic distraction tools, as they often pull you into the story, that you lose yourself in the plot, forgetting about everything else. Audiobooks are a great alternative when symptoms makes it difficult to physically be able to read.
Addictive viewing amidst a bad flare in symptoms
As mentioned in earlier posts this month, colouring books are the new craze and one which I have bought into. They are incredibly relaxing as it helps the mind focus on the present and not on any stresses that may be troubling an individual. I have found it particularly effective in helping to distract my mind from the pain in my legs. I love the intricate patterns and detail that appear in the adult colouring books, which are coming popular and provides you with some artwork to decorate your living space! I also enjoy other craft projects such as making cards, and sometimes even a go at jewellery making. Also, a great way of being productive amidst being physically incapacitated by symptoms.
Painting my nails is just another hobby and activity that I like to do during the bad times as a result of chronic illness. Living with a variety of symptoms affecting the body, and even sometimes noticing physical changes, as a result, can be difficult and lead to issues surrounding body image. For me, living with constant trembling in the legs, and very often in the hands can be miserable and very uncomfortable, noticing small tremors in my hands serves as a physical reminder that there is something very wrong with my body, so to make me feel better, I like to paint my toe and fingernails some bright and bold colours puts a smile on my face and makes me feel better and more confident about my appearance despite these troublesome symptoms.
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 on given prompts.
Tuesday 21st April: Reflection
This is a day to reflect. For the WEGO Health family, we reflect on the inspiring and tireless work Health Activists do every day. Reflect on your journey today. What are your thoughts and hopes for the future?
Currently, I am reading an emotional and uplifting book, called The Life List, by author Lori Nelson Spielman. It tells the story of loving daughter Brett Bohlinger, struggling after the death of her beloved mother. In the book, she is left not only struggling with the death of her mother, but also is then left to pick up the pieces of her shattered life, after also losing her job at the family business, and then learning that her mother’s will, has one big stipulation – to receive her inheritance, Brett must first complete the life list of goals she’s written at the age of fourteen.
The Life List by Lori Nelson Spielman
In the book, therefore, she is reintroduced to the goals and ambitions she made as a child and to reflect on the choices she has since made and the life she is currently living.
During my formative teenage years, although I never made a written list of the goals that I wanted for my life, just like anyone else I envisaged what my future would look like; marriage to a wonderful and kind man, a couple of children, and a successful career helping people for instance.
It is interesting though to ask about the efficacy of making such life lists. Are they a useful tool to direct your future toward a life that you wish to live? Or, do they only serve for disappointment when the life you saw for yourself is so far removed from your current reality?
For those living with chronic illness, for example, none of us or wanted or imagined the life that we have been stuck with.
There is nothing we want more than to be productive members of society, but unfortunately, our bodies have other plans.
Once upon a time, we imagined a life full of love, happiness, career successes, but instead, our lives revolve around our symptoms, hospital appointments and cancelled plans.
What would your ideal life list look like?
Admittedly, if I were to compare the life that I saw for myself as a teenager, like Brett in the book, and the life that, as if often seems, was planned for me, I would feel enviable disappointment regarding my life, and envy for those who are still able to pursue their life-long dreams and ambitions.
In the book, however, Brett embarks on a personal journey in search of her adolescent dreams, and by doing so she finds that life’s sweetest gifts can be found in truly unexpected places, and happiness can look remarkably different to the life that we imagined or had planned in a life-list.
And I believe that living with a chronic illness can also teach similar lessons; our lives may not have turned out as we imagined, but sometimes we may find little gifts which make life better than the one we imagined. For instance, if it were not for the neurological condition I live with then I would not have found a passion for blogging, and I like to think that although I do not have a career which entails helping people, I do good work maintaining this blog and perhaps helping others in the process.
Another gift I have discovered on this chronic illness journey is the wonderful friends I have made along the way, and continue to make every day.
The support and friendship among the ‘spoonie’ community are astounding, and every day I am discovering new friends who are special and making friendships that will last for many years to come.
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 on given prompts.
Monday 20th April: Travel Time
If you could travel anywhere in the world, where would you go and why? Maybe you’ve already traveled to an exciting place and want to go back. We know travelling with a chronic illness can be challenging, so any tips for others that you can share would be great!
“Don’t float through life, make waves…”
– unknown
Travelling has never been an activity that I have particularly enjoyed.
I am very much a home-bird; never happier when I am at home surrounded by the comfort of the familiar. Packing for holidays has also been something that I have found stressful, with my parents constantly barking at me to get everything I am taking with me ready, and then asking if there is anything that I have forgotten!
As my condition has steadily worsened over the years, holidays, as a result, has not been a priority and therefore have stayed with family whilst my parents have gone on holidays including a trip to Canada, and their first cruise to celebrate their thirtieth wedding anniversary.
The debilitating symptoms and love of the familiar are not the only reasons why travelling is just not my bag. Living with a long-term condition in which the symptoms fluctuate, and as a result makes life very unpredictable. Life with a chronic illness is often extremely unpredictable, never knowing how we are going to feel from one day to the next, and never knowing when symptoms are suddenly going to appear. And it’s this unpredictability therefore that makes travelling particularly difficult and daunting also. As my condition, and particularly the dizziness and vertigo worsens in buildings with high ceilings, such as airports, for example, flying abroad is also very problematic and therefore has prevented me from being able to travel. Because of this it just seemed easier not to travel and instead enjoy the sights on one’s doorstep as an alternative to travelling long distances.
However, two years ago and after experiencing difficult times as a result of the neurological condition I live with, my parents decided that we were all in need of a relaxing holiday and away from the stresses of illness, hospital appointments as well as those experiences in everyday life. And somehow, they talked me around to going on a Mediterranean cruise visiting France, Italy, Spain, and Portugal.
This beautiful picture taken during our last cruise is one I will forever treasure. Even when experiencing debilitating symptoms, I appreciated the extraordinary beauty of my surroundings
All my research assured me that this type of holiday was ideal for those with disabilities or chronic illnesses; not only is cruising extremely relaxing but also has the benefit of having your cabin close by for when symptoms appear out of the blue and suddenly being taken ill. Cruise ships are also fully accessible if a wheelchair is needed, and unlike air travel, there are no long waits or delays at airports, so much less stressful than flying to holiday destinations!
Regular readers of the blog will know about the trip which I wrote about in a past post. The cruise was difficult for me due to a sudden deterioration of my symptoms which occurred a couple of months before the start of the holiday. As a result, I was unable to get off the ship at the different ports and go on the excursions. Most of the holiday was either spent in the cabin reading or sleeping, or in the solarium relaxing, in the attempts to ease the excruciating pain in my legs.
Despite this, however, this year I am once again going on another cruise, even going on the brand new Royal Caribbean cruise ship, Anthem of the Seas!
A lot of you, are probably wondering why I would choose another holiday after my first experience last year. Well, yes, the holiday did not go as plan and was left unable to do many things that I was looking forward to before leaving due to severe and debilitating symptoms, but that did not mean the experience itself was awful. We needed a holiday to relax, unwind and switch off from the stresses of everyday life, which despite the pain and other debilitating symptoms affecting the holiday, I still managed. The cruise was not an awful experience, and there were plenty of moments that I thoroughly enjoyed (such as dressing up) during the trip.
Furthermore, I thoroughly believe that we cannot let one bad experience put us off from trying again. Just because I experienced a relapse in the debilitating symptoms last year before and during the cruise, does not mean that the same thing will happen this time. This cruise will be my second, and therefore will be easier, as I am more aware of what the experience will entail and am able to put actions plans into place for when symptoms arise or when I am suddenly taken unwell.
In addition, the last holiday also helped me realise the need for a break from seeing the same four walls every day and the same routines we live out; the cruise was a welcome break from constantly being stuck in the house, or held up in my bedroom due to severe symptoms.
It was an opportunity to see new sights and experience things that I could never encounter at home.
This time around, however, we will be cruising around the Canary Islands and visiting ports in Spain and Portugal also. It again will be a welcome respite from the stresses of living with a neurological condition, and endless medical appointments, as well as the opportunity to absorb plenty of vitamin D with its many health benefits.
With the first cruise on the new ship being imminent, and therefore being inundated with photographs of the beautiful decor and the many new activities to experience onboard via social media, I am beginning to get very excited about our cruise in September. I am determined to forget about the disappointments caused by the previous cruise, and even more determined to enjoy and soak up as many new experiences as possible this year.
What about any tips that I could offer for travelling with a chronic illness? There are plenty that I could offer after my experiences last year but here are some of my top tips:
Let the travel company know of your medical condition and any help that you may need. When booking a cruise, or booking a hotel room, book a wheelchair accessible cabin/room, if a wheelchair is required for the holiday (it may be best to hire one if you do not own your own especially if symptoms such as fatigue is a problem).
Carry all your medications and other necessary items with you in your carry-on luggage. When cruising, your luggage is taken from you after arriving at the port and you do not see them again until you are in your cabin. However, with a lot of passengers, onboard delays can occur so any important items are best to pack in your carry-on luggage. Also, include items such as swimsuits too so you can make full use of the amenities as soon as you are onboard.
Expect the best but prepare for the worse. Chances are, you may not be able to participate in all the activities and trips during the holiday. So, as a result, prepare for some quality time by yourself in the cabin or hotel room. Bring books, audio books, MP3 player or anything else you can do to keep yourself entertained whilst resting. Wi-fi may not be available so perhaps try downloading some movies before you leave in preparation
Don’t overdo things. It can be so easy to get carried away on holiday, and push your limits to keep up with everyone else, but don’t forget to listen to your body and take a break if you need to, because if you don’t you may pay for it later
Prepare yourself mentally for leaving and accept your limitations. Experience has taught me that you need to know your limitations and accept them before you leave, as chances are, you will not be able to do everything that you want during the trip and it’s best to accept this before you go and instead of worrying or getting upset by it, instead make the most of everything that you can do and enjoy them
