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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

In Chronic Illness

HAWMC Day 10: Food, glorious Food!

April 10, 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.

Friday 10th April: Comfort Food

We’re not all 5 star chefs, but we all need to eat! Tell your readers how to make your favourite dish. Does the recipe hold a good memory for you? Is it the act of cooking itself that brings you joy, or the people that come together to eat it?

Admittedly, because of my condition it is incredibly difficult for me to be able to cook – weakness in the legs and the potential for them to give way with no prior warning therefore makes it dangerous to be able to cook dinner for myself or others.

Consequently, I have to rely on my parents, particularly my lovely Mum to cook dinner in our household. Not that I don’t do any cooking at all; in fact once a fortnight I help prepare the lasagna. Usually on a Friday afternoon, ready for Saturday night. And as the dish is for the next night, it means that I am able to take my time and do the preparation and cooking of the meat sauce in stages, taking breaks when I need them and relying on my perching stool when my legs are trembling badly.

After the meat sauce is cooked, my Mum makes the bechamel (white sauce) sauce before assembling all the layers in the dish, letting it rest and placing it in the fridge. Even just preparing the meat sauce tires me and leaves me feeling weak so in some ways I am glad that I do not have to cook on a regular basis. I do enjoy the process despite this however, and it makes me feel useful and that I am contributing a little to our household.

I love food, although for some quite time I have been experiencing a lot of nausea and as a result I am not always in the mood, or enthusiastic about mealtimes. However, by living with parents, I am encouraged to eat even when I don’t want to!

However, the favourite dish that I am going to tell you all how to cook, is one that we first made recently, and is one that is special as it is a meal that my Mum and I cooked together, spending quality time with each other and is also a time that despite experiencing a lot of nausea, it was a meal that I thoroughly enjoyed and felt good after eating.

It is also a meal that is healthy and low in fat and as it is a dish that includes spinach it can help with symptoms including fatigue due to the iron!

LINGUINE WITH GARLIC, PRAWNS & SPINACH

Serves 4

300 g linguine (or spaghetti if you prefer)
salt and freshly ground black pepper for seasoning
4 tablespoons of extra virgin olive oil
1 garlic clove, sliced
150g spinach leaves
400g uncooked prawns, peeled
4 tablespoons chopped flat-leaf parsley
grated zest of 1 unwaxed lemon
10 cherry tomatoes, quartered

Cook the pasta in a large saucepan with plenty of boiling salted water until al dente
As the pasta is cooking, heat the oil in a large frying pan over a medium heat and fry the garlic for 1 minute until golden. Then add the spinach and cook for a further 2 minutes
Add the prawns with the parsley and season with the salt and pepper. Stir well and continue to cook for a further 2 minutes or until the prawns are pink
Once the pasta is cooked, drain and add to the frying pan with the other ingredients, then lower the heat
Add the lemon zest and cherry tomatoes and stir everything together
Serve and enjoy!

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In Chronic Illness

HAWMC Day 9: Getting out of the Comfort Zone

April 9, 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.

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.

We may be missing out on incredible adventures and challenges if we don't push our comfort zones — We may be missing out on incredible adventures and challenges if we don’t push our comfort zones

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!