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In Chronic Illness

HAWMC Day 15: The Joy of Letters

April 15, 2015 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 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.

Something really special about receiving letters, don't you think? — Something really special about receiving letters, don’t you think?

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!

Writing and receiving letters is a real joy

In Chronic Illness

HAWMC Day 14: Trying to take on the world…

April 14, 2015 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 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.

Living with symptoms which are constant can make it difficult to be able 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.

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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.

In Chronic Illness

HAWMC Day 13: In Need of a Dose of Self-Confidence

April 13, 2015 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 on given prompts.

Monday 13th April: Perfect Comeback

Tell us about a time when you felt marginalised or stigmatised by someone because of your health condition. Maybe at the time you didn’t speak up, or maybe you did – what did you say or what you have said to take back control and let them know that they were out of line?

It is an extremely difficult prompt for me to answer.

I guess that I am lucky that I have never been in any situations where I have felt marginalised or stigmatised because of my health condition. One reason, for this, maybe is because the disorder which I live with is neurological, and therefore invisible.

By just looking at me, you could never know about the battle I always live with regarding my health and mobility.

Sure, I use a crutch when I am out of the house, but even when I am out with the mobility aid, I have not encountered any negative comments from other people. Some ask questions about the reasons behind it, often assuming that the crutch is temporary due to an injury to my leg. A situation which does not warrant confronting them about being out of line, I am sure you will agree. Others comment on the look of my crutch, loving the orange colour of my stick.

A bright and funky crutch can be a real talking point

The only examples of when I may have been stigmatised are times when I have been in my wheelchair, and when in shops, for example, people have started talking to my carer instead of myself, assuming that I was unable to speak for myself. Looking on social media, and reading other blogs by fellow spoonies, unfortunately, this assumption is widespread with many reporting that they have felt people have spoken to them as if they are stupid when in a wheelchair. Why this is, I cannot say, but perhaps many are misinformed about disabilities and failing to distinguish between physical and intellectual disabilities. These anecdotes suggest that many people are wrongly assuming that those in wheelchairs due to physical limitations or conditions also have an intellectual disability.

Being in a wheelchair can be lonely and isolating enough without people assuming that we are also stupid!

In this situation, I could have said something to educate them on the facts. I could have informed them that there was no need to talk to somebody else besides myself, as someone holding a degree in Psychology, I am perfectly capable of speaking for myself. However, I didn’t. Why is that?

Well, as somebody who was bullied at school, I lack self-confidence and as a result, find it difficult to speak up for myself. Even all these years since, assertiveness is a skill that I struggle putting into practice. Whenever someone says a snide comment, I am unable to think of a good comeback remark to the person, and if I did, I am too timid to say it to them. Even when in need of complaining about bad service or product, I am much more confident and adept at putting my thoughts in writing. I am somewhat of an introvert, being more comfortable with reflecting on social interactions rather than being comfortable in participating in them.

So, during those situations when a person has wrongly assumed that I am stupid or unable to talk for myself, honestly I am not sure of the appropriate response or how I would respond if the situation arose again. But, perhaps maybe this prompt has made me aware of the need for assertiveness training and a dose of self-confidence.

In Chronic Illness

HAWMC Day 12: When in Need of Self-Care…

April 11, 2015 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 given prompts.

Sunday 12th April: Day of Rest

Kick your feet up! What is your ideal day in? When you’re having a bad day, or a long week – how do you relax, recharge, and reset yourself?

Self-care can be defined as the process of maintaining health and managing chronic illness through health promoting practices and self-management. It could also be defined as coping strategies during relapses or flares of symptoms. Self-management are behaviours that are performed in response to signs and symptoms of illness.

When living with a chronic illness, therefore it is important to embed self-care and self-management practices into one’s routine. Perhaps one important aspect of self-care is having a day of rest on days in which symptoms are particularly bad, or even days following a relapse to allow the body rest and recuperation, and a chance to regain depleted energy levels.

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Recently, the symptoms associated with my neurological condition such as pain, dizziness and the trembling and weakness in the legs have been debilitating; often finding they become worse days after trips out with my carer. As a result, I have been in need of days of rest myself, so this post should come easy!

These are some of my top tips for activities to put into place on those bad days, or just for when you need to relax, recharge or recuperate from life with chronic illness:

Date with Netflix (other streaming service are available!) or DVD: When I am having a bad day, or in need of a quiet or relaxing day, then watching a film is one of my favourite ways to spend my time, especially for someone who is somewhat of a film buff. In particularly I love romantic dramas or even a good romantic comedy. Nicholas Sparks adaptations, such as Safe Haven, The Best of Me and The Notebook are amongst my favourite films to watch when having a bad day. Or, the need of a quiet and relaxing day is a perfect opportunity to discover new films to enjoy
Art Therapy: The pain that I experience in my legs has been really bad of late. So bad that it is hard to concentrate or think about anything else. A while back, however I remembered an article that I read that discussed the new craze and resurgence of colouring books for adults. In the article it suggested that the art of colouring-in is very beneficial for relaxing and beating stress and anxiety. Colouring allows a person to concentrate and escape from their thoughts and daily life in a similar way that mindfulness does. At the same time, I seen advertising for a new magazine called Art Therapy, which has pages of different patterns and designs for users to colour-in, also including pages dedicated to insights regarding to mindfulness and relaxation. Basically the magazine allows for quality time with yourself. I subscribed almost straight away and after receiving the first issue, I have been colouring during my days of rest and has found it has been a great technique to distract myself from the pain. It’s also really fun!
Pampering!: Nothing like a bit of pampering to relax and give yourself some self-love. If I am feeling down or had a bad week, then I love nothing better than to use one of my luxurious nail kits and paint my nails. Whilst Mum and I were in Bath, and my pain was bad, she went into the local Lush store and bought me a Massage Bar which includes an oil which has been shown to increase serotonin levels in the brain. A great way to give yourself a little pampering and lift your mood at the same time!
Create a happy and relaxing playlist: Music has been shown to have a positive effect on mood and well-being. And I love music and have songs on my iPod that triggers a special memory or instantly makes me smile. So, why not create a playlist of happy and uplifting songs to put on your MP3 player for when you need a pick me-up, or relaxing and chilled music for the times you need to unwind and recharge.
Create a Comfort Box: I have written about the concept of a comfort box in previous posts. But simply, a comfort box is a box that you can fill with things that brings you comfort, joy and relaxation. Ideas to put in a comfort box include craft kits, pictures of happy times, favourite books, films or television boxsets. Other examples include scented candles, favourite snacks or even a journal. The comfort box can even be placed under or near your bed so that it can even be of use when stuck in bed due to chronic illness.
Example of a Comfort Box
Spend time stroking your pet: Take time stroking a pet (if you have one) as research has found that doing so can lower your blood pressure, helps the body release a relaxation hormone, and even helps cut down levels of a stress hormone. And it has beneficial effects for the animal too!

In Chronic Illness

HAWMC Day 11: A Spoonie and her Faithful Friend…

April 11, 2015 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 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.

Gorgeous picture of Honey :) — Gorgeous picture of Honey 🙂

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.

This is a picture of Honey on 'Rhiann Watch' on a day in which I was in bed due to severe dizziness and incredible weakness in my legs. Was home alone so Honey saw it has her duty to keep me company and make sure all is well! — This is a picture of Honey on ‘Rhiann Watch’ on a day in which I was in bed due to severe dizziness and incredible weakness in my legs. Was home alone so Honey saw it has her duty to keep me company and make sure all is well!

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.

Lots of love from your loving owner

Rhiann