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.
Wednesday 15th April: Get Excited!
What revs up your internal engine? When you see, hear, feel this it gets you excited and ready to face what comes next. Tell us what it is!
In my recent experiences with dealing with severe and debilitating symptoms due to chronic illness, it is often very difficult to get excited about anything.
In the mornings, experiencing severe symptoms such as dizziness, pain, nausea and trembling, it is often a struggle to get through the day with enthusiasm and joy.
Recently, however, I have joined several groups through the internet, where you can meet and become pen pals with other people. A couple of these groups are especially for those living chronic illnesses, or other long-term health conditions.
It is lovely receiving small gifts, or letters through the letterbox especially when they arrive unexpectedly. Reading positive, inspiring and motivational words from others can be a real boost to start the day, especially on the days which are particularly bad. These words are especially special and meaningful when they come from other people also living with chronic illness and therefore can understand the challenges and difficulties that I face living with a neurological condition.
Receiving cards and letters are much more personal than emails for example and are lovely to keep and look back on when we really are in need of a lift or a reminder of everything good.
Writing and keeping in contact with other people also allows me a connection to the outside world and as a way of making new and maintaining existing friendships, as the severity of the symptoms I live with keeps me in the house a lot of the time, and as I am unable to get out of the house unless I am accompanied by another person.
It is not just receiving cards and letters that evokes happiness. It is also writing and sending cards and letters to others that brings me joy and happiness; the thought that the cards and words that I write will cheer up and help somebody else is also pretty exciting!
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 14th April: “I feel best when…”
Write about moments when you feel like you can take on the world. Where, when and how often does this happen?
Again this is an extremely difficult prompt for me to answer. For some time now, too long to remember when it started, but the symptoms have become much more severe and debilitating. As well as the deterioration in the severity of the symptoms, the symptoms themselves over the years has become constant.
It now seems that I never get a respite from the symptoms such as the dizziness, trembling in the legs and pain. Not all the symptoms, however, are constant, for instance, certain triggers provoke visual disturbances, and although these symptoms are not consistent, they still occur more than they used to.
Therefore, as I never get a break from living with the symptoms, every day can often feel like a struggle and can feel that I never feel my best and able to take on the world.
This is especially the case when going out after a restless night’s sleep due to pain, which has been the case for a few months. Furthermore, as the trembling and dizziness are so bad, it is a struggle to be able to get out of the house, never mind finding the stamina to take on the world.
Although, I do find that when I am feeling at my worst due to the pain and trembling in my legs as well as the dizziness and I somehow find enough strength and determination to achieve something that I have struggled to do, such as going to a place that is difficult for me (e.g. retail stores which have high ceilings or a lot of fluorescent lights).
When I do, I suppose it is the closest I can feel to being able to take on the world; I experience a surge of confidence when I have been able to battle through the debilitating symptoms to achieve a goal. I cannot remember when the last time it happened, but I can remember feeling so happy and proud of myself after managing to stay in a local Next store despite struggling to cope with severely trembling legs and horrendous dizziness.
The symptoms were so severe that during the entire trip, I felt like I needed to get out of the store and go home. However, despite how bad I felt, I fought through the symptoms and managed to stay in there, even long enough to queue and buy an item of clothing. For me, at this time it was an immense achievement as there were many times when I was unable to go to the store due to my symptoms.
I also notice that when I can push through the symptoms and able to accomplish a goal, I am also able to do more and go to other places too.
Perhaps it is the little achievements that we as spoonies manage to carry out despite living with debilitating and continuous symptoms that can make us feel like we can take on the world.
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.
Saturday 12th April: Pet Pal
Write a thank you letter to your furry, feathery, or fishy friend for always being there for you. How have they helped you cope with your health condition?
Dear Honey,
It seems strange writing you this letter, as for you are a dog, and therefore cannot read. But this is a letter of thanks. A letter of thanks to you for your many years of love and loyalty that you have not just shown to me, but to the entire family. A letter to thank you for always being there for me through the good and the bad.
Who knew that when we first got you fourteen years ago from The Dog’s Trust that we would have been on this long and arduous journey together. It is true that even back then, I was ill; suffering from unexplained dizziness and problems with my legs but we had no idea the cause or that it would be long-term.
Even more incredible was the connection that we developed. Do you remember the times when you suddenly started crying? We do, and the times we would try to figure out the reason behind it! And then we noticed the correlation between the crying and the onset of the dizzy spells that I was experiencing – you were warning me when the dizziness was going to start. It wasn’t just this, of course, which solidified our connection, but also the fainting spells that happened a couple of years after you came into our lives. I don’t remember the moments before the attack, however, but I just remember coming to and seeing you standing over my body and licking my face. How clever and loving you are!
Now of course, being diagnosed with a neurological condition which has deteriorated quite significantly since the time we first brought you home with us, a lot has changed. For instance, I am home a lot more as I am too weak and unwell to leave the house unaided, and in addition, because of the weakness in my legs, I can no longer take you for walks either by myself or with Mum.
But what hasn’t changed however, is the love, loyalty and companionship that you show me. The love that you obviously feel for me; the wag of your tail when you see me, how you bark at me when my legs are too weak and not stopping until I am safely sat on the sofa. Often my symptoms are severe, and a lot of those days, both Mum and Dad are at work and therefore home alone, but having your presence with me is comforting. It makes me feel both comforted and protected having you snuggling with me whilst I am lying on our sofa with a blanket, too weak to move. Or when the weakness is so severe and stuck in bed, and you will come upstairs regularly and check on me, or lie next to my bed makes me feel loved and well looked after and managed to raise a smile on a bad day. I feel so guilty on these occasions as I am unable to get up to feed you, and although you do constantly harass me to do so, you never hold it against me that I cannot do so. You still show me a lot of love and affection. And I reciprocate; I even love you coming into bed with me, even if you do somehow take up most of the bed!
You have brought so much joy to our family during the last fourteen years; you make us laugh with your silly antics and especially the cheekiness that you are exhume on an almost daily basis. But most of all I love our cwtches (so cute when you lean against me and tuck your head into my neck) and the kisses that you give when I am feeling at my worst.
I feel so fortunate and grateful that we found you from The Dog’s Trust that September fourteen years ago, although sometimes it feels that you chose us than the other way around. There is an old saying that ‘a rescue dog loves you more’ and I really think that you are the perfect example as I can’t imagine another dog loving and taking care of me they way you have. You will always be a loved member of our family. We certainly will never be able to forget you. Thank you for everything you have done for me, and always being there when I am in need of comfort. I know nothing lasts forever, and you are getting old now, but I still hope that we still have several more years ahead of us together.
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.
Thursday April 9th: Challenger
Share with readers about a time you had to overcome a daunting challenge. What words of encouragement would you share with others who find themselves facing similar difficulties?
The last daunting challenge that I had to face, and one of the biggest challenges that I’ve faced for a long time, was our holiday in May of last year.
The holiday was a fifteen-night cruise around the Mediterranean Sea, visiting ports including Cadiz, Barcelona, Livorno (Florence) and Civitavecchia (Rome).
Not only was the first time that I was to go on a cruise, but it was also the first holiday I would have been on, since the deterioration of my symptoms such as the dizziness and weakness in my legs.
I mentioned in a recent post, about the anxiety provoked by going to new places or experiencing anything new can be for someone living with a chronic illness. Not only do visiting or experiencing anything new raises a lot of ‘what if’ questions (What will I be like? What if I become ill? for example) but as chronic health conditions often flare, we therefore do not know how our conditions are going to be around the time we are away.
Furthermore, as someone living with a chronic illness, familiarity is comforting. Being surrounded by everything that is familiar is comforting; they hold special memories, and know familiar places like the back of our hands and if we become ill we know exit strategies or places easily accessible to recuperate until we feel better.
Being out of our comfort zones, therefore is uncomfortable and scary. The fear of the unknown is overwhelming. And this is exactly how I felt for days leading up to the cruise, especially as I was also experiencing a bad time with my symptoms at the time. There were times, I admit that I really didn’t want to go, but looking back, I was so glad that I did. Here are some words of advice and encouragement that I would give for anyone in the same position:
Talk through your fears and worries with somebody else, preferably someone going with you on the holiday (or whatever situation you are in). Our minds will very often catastrophise things, and these thoughts often become out of control when we bottle them up. So, talk through the worries and anxieties with another person and then talk through coping strategies and action plans for various possible scenarios
Make an appointment with your GP and ask for some extra medication to see you through the holiday. I was so glad that I did, as because I was experiencing a sudden deterioration in symptoms, the doctor prescribed me some extra medication for the worsening pain which really helped during the cruise and helped with sleep
Do not focus on what you cannot do, but enjoy and make the most of what you can and what you enjoy! On the cruise, as I was feeling so bad for the majority of the time, I found that I was unable to do things that I was looking forward to such as getting off the ship and visiting places like Rome and Florence. At the time, however, I spent so much time being upset and frustrated at not being able to do it, that I forgot to enjoy the little things that I was able to do, such as the relaxation and pampering in the solarium and using the wonderful facilities such as the jacuzzi, which really helped to ease some of the pain
Relax and enjoy! Holidays are all about resting and relaxing (in my opinion), and everyone has different ideas on what this entails. If this means, lying on sun loungers all day, or reading by the pool then do it! Don’t compare your holiday experience with somebody else. Make the most of what you are able to do.
Feel the fear and do it anyway! If there is anything that I learnt during the daunting challenge last year, it was definitely to worry less and enjoy it more. Going on holiday with a chronic illness is challenging, however, it is also very worth it. It allows not only a break from the ‘spoonie’ routine of doctor and hospital appointments but also allows a welcome respite from the confines of the four walls of our homes where we spend a lot of our time. So, just go and make wonderful and lasting memories to cherish 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 upon given prompts.
Sunday April 5th: Breaking News The top story of today is…YOU. Share with your readers your proudest accomplishments in the last 5 years. Don’t be shy, tell us everything!
It often feels that chronic illness robs us of our lives. As a result of the debilitating symptoms we constantly live with, the majority of our time is very often spent inside the safety and comfort of our homes. Sometimes much of our time is even spent stuck in bed. It very often feels that chronic illness is controlling us rather than the other way around. And because of these feelings of inadequacy and grieving over the life we have lost takes place in our conscious thoughts. I know from personal experience, that very often we feel that because of our time spent living with illness, we have not accomplished anything special, especially when witnessing the many accomplishments and big life events of our friends and family on social media. We forget to celebrate the small victories and accomplishments that we achieve without us ever realising it; sure, they may be inconsequential to an outsider, but fellow spoonies and our close friends and family will know how big these triumphs are, especially as it shows our strength at not letting our chronic illness win and dictate our lives. So, as the prompt asks, I am going to share with you all some of the small victories and accomplishments that I have achieved during the last five years:
Going on a cruise – This is probably the biggest accomplishment that I have achieved. A lot of people are afraid of the unknown, but as fellow spoonies will relate, this fear can become worse when living with a chronic illness. So, going on a holiday, and especially a holiday that we have never been on before can provoke worry. What will it be like? How am I going to feel during the cruise? What if I become ill? A lot of questions are raised when going on holiday and a lot needs to be thought of when living with a long-term health condition. But despite the worry and the severity of my condition at the time, I still went on the fortnight cruise and had a wonderful time
Going to Bath – I am a fan of Jane Austen, so it has been of one my dreams for sometime to go and visit the Bath, a city in which she lived for several years and influenced several of her novels. And last week, I made it there. At the time I was disappointed as the trip to the museum was the only visit I accomplished during the time, Mum and I spent there. The rest of the trip was spent lying on the bed in the hotel as I was too unwell to do anything else. But looking at it positively however, the trip was still an accomplishment as not only had I visited a new city that I had never been before, but I also visited someplace I wanted to go for sometime.
Going to the Cinema – Due to the dizziness, going to places such as the cinema is very difficult for me, as it’s not only due to the extensive sensory overload which can make the dizziness worse and cause vertigo but due to the neurological condition, I am unable to cope with buildings which have high ceilings. However, despite this when the film, Les Miserables came out I really wanted to go and see it as it’s one of my favourite musicals. My carer took me to a smaller cinema, but it was still quite the ordeal and really had to battle against the dizziness and nausea. Somewhere, despite all of this however, I managed to stay and watch the entire film and so therefore this was quite the accomplishment.
Started shopping at Next – Due to the problems with large buildings being able to go and shop in stores located in local retail parks is also extremely difficult, and as a result mostly use online shopping to buy clothes from my favourite store, Next. However, before my cruise last year, I wanted new clothes to take with me. So, once again I pushed myself to go in there, it was not easy and often had to leave the store and go back and sit in the car because of the severe trembling in my legs but the determination I had gave me the strength to try and try again. Now, I regularly visit the store, even if it’s just to look around, and can even push myself to spend more time in there then I previously could.
Visiting new places – A lot of spoonies, I am sure can relate to the difficulty and worry of going somewhere we have never been before. We spoonies often love the familiar. Going to towns or cities which we know well is far easier when living with a chronic illness as we know where certain facilities are such as the toilet for example. For me, suffering with severely weak legs and dizziness I often need to sit down somewhere quiet, and therefore when shopping in familiar surroundings I know where there are suitable places to take a rest. When going to new places, however, we do not know any of these types of information, so visiting someplace new can cause worry and anxiety but during the past year or so I have managed to push myself to visit new places, which I have throughly enjoyed and although there have been problems such as legs giving way when I have not found any places to recuperate when symptoms flare, I am glad I have given myself the opportunity to experience new places and now have new places I love shopping!
What have been your recent victories and accomplishments? Celebrate them all – even if they seem small and inconsequential! Being a spoonie, even getting out of bed and having a shower is an achievement, especially on a bad day!