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HAWMC Day 29: Massaging the Pain Away…

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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.

Wednesday 29th April: Product Review

What’s your favourite health-related product?  Share it with your community and tell them why you love it so much and how it has helped you on your patient journey.

The pain that I experience in legs as a result of the spastic paraparesis (stiffness and weakness in the muscles of the legs) is severe and unrelenting.  The medication, pregabalin that I take to control these symptoms, however only seem to dull the pain somewhat and as a result, I still live with these debilitating symptoms every day.

Last year, whilst on the cruise, the intensity of the pain had increased prior to leaving for the holiday.  I was prescribed co-codamol on top of the existing medication, but it only helped somewhat and found that it helped more with insomnia that I was experiencing as a result of the pain.  My Mum decided to book a spa treatment for her and myself; a luxurious 60-minute full-body massage.

Research has shown that massage is effective in helping to relieve and reduce pain.  Studies suggest that there are several ways that it does just that.  For instance, massage is thought to increase blood flow to sore, stiff joints and muscles, which are warmed by the extra circulation.  Furthermore, massage also triggers the brain to release natural painkillers as well as helping to speed the flow of oxytocin.  Oxytocin is a hormone that relaxes muscles as well as promoting feelings of calm and contentment.

It was pure bliss! After the massage had ended, I felt incredibly relaxed and found it also lessened the pain also! Bonus! The combination of the massage itself, and the oils used, which is said to ease the pain (the masseur asked of any medical issues prior to starting the massage to tailor it to my needs) really helped to ease the severe discomfort in my legs.  We were also if we would like to purchase the oils that were used during our massage, Mum purchased,  to use them at home to massage my legs when the pain was at its worst.

Massages, as I am sure you are well aware of, are incredibly expensive and as I am unable to work because of my condition, it is therefore not an alternative therapy that I can afford.  Obviously, we still had the massage oils to use, but as Mum has never been trained as a masseur, the effects were not the same!  After doing some research and after talking to people also experiencing chronic pain, I thought about buying an electric body massager to see if it would work in helping to ease some of the pain.

It would also allow me to massage my legs by myself without relying on another person, especially as I am often on my own in the house.  Being able to do it myself would allow me to be able to massage my legs when I really am in the need of one.

After a lot of online research, I purchased the Homedics Perfect Reach Massager.
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It’s great as its light-weight which allows you to be able to hard to reach areas, and as someone who struggles to hold heavy items, it’s light enough for me to be able to massage all areas of my legs.  The massager also has two different speed settings; which allows you to either choose a low setting for a relaxing massage or the high for a more invigorating massage.  I have found that on days where the pain is not quite as intense, the low setting is appropriate speed to relax the muscles in my legs; whereas the more invigorating setting really helps knead the muscles, allowing them to relax and to alleviate some of the pain.

The device also has 3 custom attachments, which includes an attachment which has a wide area for comforting larger muscles (very useful for the legs, I have found), a roller for kneading massage and a spot for targeted relief.

Using it has helped alleviate some of the pain that I experience, obviously, it isn’t a magic wand and therefore it still a symptom that I live with constantly, but is a tool that I find helps when the pain is at its worse.

And I have found that its positive effects do not just include pain management, but I have found that after having a massage I am more relaxed and less affected by stress.

I personally love the product and has a place in my comfort box as just one tool in my battle against chronic pain.

And it allows me to be able to have a regular massage without the hefty price tag!

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HAWMC Day 18: Here Comes the Summer!

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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.

Saturday 18th April: Summer is Coming

What are the 3 things you look forward to the most in summer?  Whether it’s the travel, the weather, family cookouts, or another activity, share with your readers why you’re excited for the summer!

It’s fast approaching the end of April, and as we enter into May we are ever nearing the start of Summer.

Hopefully, like last year we will be immersed in months of glorious sunshine and warm temperatures.

Summer is the probably the favourite season for most people if asked.  Living in the UK, and experiencing long and miserable winters, the summer, therefore, provides a welcome respite from the grey clouds and rain.

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With grey clouds overhead everything can look bleak and depressing.  In the summer, however, the same scene can look beautiful cast in dazzling sunshine and bright blue skies.  Also, if you ever notice being out and about during the winter, everyone seems in a rush; dashing in shops and buildings to escape the rain.  The same people during the summer, however, are much less hasty during their walks, taking their time whilst enjoying the feel of the warm sunshine on their skin.

Furthermore, in my personal experience, and depending on whether the temperatures do not get too high, I find that the chronic pain that I experience as a result of spastic paraparesis eases slightly during the summer months compared to the excruciating pain that the very cold temperatures during the long winter months cause.  Taking part in activities such as swimming also helps relieve any pain and discomfort that I do feel, and there is no better time of year to do said activity than the summer.

Look at that view basked in beautiful sunshine and blue skies filling the sky. Bet it wouldn't look half as beautiful when there are grey skies!
Look at that view basked in beautiful sunshine and blue skies filling the sky. Bet it wouldn’t look half as beautiful when there are grey skies!

A few months ago, I wrote a blog post about the reasons to love winter.  Not an easy article to write, and often felt that I was taking the reasons for hating the season and putting a positive spin on them.

I have the opposite problem with writing this post about summer; there are so many reasons for looking forward to summer, that choosing only three is extremely difficult!

Here are my reasons for loving summer:

  • Summer Fashion: Although I love my winter wardrobe as mentioned in my post on the reasons to love the season, with the chunky knits and thick, comfortable leggings, I prefer the summer fashion with all the bright colours such as orange, yellow and pink, all of which to me represents happiness.  I also adore wearing maxi dresses and white trousers, all fashions that look lovely and fresh during the summer months!  Recently, going shopping and noticing the new looks for summer, with the bright colours everywhere in the shop looked cheerful.  And the swimwear collections, reminding us that holidays are also looming
  • Good Times: The choice of activities during the winter months can be quite limited in part due to the changeable British weather.  However, if you are a person who likes to be busy and active, you are certainly spoilt for choice during the summer, as there is so much to do.  Summer fêtes, open-air theatre productions, outdoor concerts and music festivals to name but a few.  Tourists besiege the popular destinations, making the summer feel like one long party.  With so much to do and the fact it’s light early in the morning, and the days are long, we get to see much more of our friends and families, enjoying barbecues, picnics, playing games and gossiping until late. Making memories that will last forever.
  • Nature: There are lovely natural sights to behold during the summer months.  Beautiful, bright butterflies fluttering around.  Dazzling, exquisite flowers in full bloom.  The smell of freshly cut grass.  The sound of birds chirping.  Everything feels alive and exuberant during summer!

There must be something special about summer, I mean even a snowman wants to experience it!

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HAWMC Day 16: A Focus on the Present…

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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.

Thursday 16th April: Life Goal

What’s one thing that your 10-year-old self thought you would do?  Can you still do it?  How would you approach it to make it happen?

Me at ten years old really seems like a lifetime ago; more than the nineteen years that have passed since.

In all honesty, I cannot remember anything that I thought I would do as an adult.  By that age, the dizziness that now is constant in my life had started.  At ten, the dizziness was not constant but was experiencing episodes of severe dizziness and vertigo.  These episodes were becoming very frequent, and as a result, it felt like most of my time was spent waiting for the next attack.

As at the age of 10, I was not really aware of what was happening in regards to my health and the reasons for the dizziness; but experiencing frightening symptoms at a young age can be anxiety provoking.  It makes you aware of the present, constantly on edge for the next attack. As a result of waiting and worrying for the next attack of the dizziness, I was therefore not thinking or making plans for the future.  I was too preoccupied with the present and the symptoms that were afflicting my life.

Life often has a way of making us to look at the past, present and future
Life often has a way of making us look at the past, present and future

Although, as a child who has always been studious, I suppose that I have always had the wish to further my education and attend university.  At that age, like many children at that age, my career aspirations were constantly changing; from wanting to become a teacher at one point to wanting to become a nurse during another.  Even if I do not make any more of my past aspirations a reality, at least I have made that university plan a reality, gaining a degree in Psychology.   Attending university and getting that degree whilst living with a neurological condition, and battling against the dizziness, fatigue, and pain was not easy and had to have a lot of help (such as a buddy to take me to lectures) from family as well as the university staff to make it happen.

Fast forward to me at twenty-nine and I suppose I still tend to focus on the present (and occasionally on the past) and not on the future.  It can be scary and worrisome to make plans for the future when living with a chronic illness, as we have no control or even an idea as to what our health will be like in months or years to come.  Experience from having to cancel plans with friends as a result of chronic illness, warns us of the perils of making short-term plans, so making more long-term plans is even more difficult.

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Over the past several years, the symptoms caused by my neurological condition, have become increasingly worse, so looking ahead to the future is a frightening prospect at the thought that in the years to come, my condition will be even worse than it is, therefore, perhaps when living with a chronic illness it is best to live in the present and appreciate all the little happy moments that happen in the here and now.

Today's a gift. That's why it's

 

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HAWMC Day 9: Getting out of the Comfort Zone

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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.

The magnificent ‘Adventure of the Seas’

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!
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A Bad Day Does Not Mean The End of the Day…

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Regular readers of my blog, and especially those who follow me on social media will know that life recently has been very tough due to the symptoms that are caused by the neurological condition that I am now forced to live with.  The symptoms associated with my neurological condition such as dizziness, fatigue, pain as well as the severe weakness and trembling in the legs have all deteriorated.  And as a  result of this deterioration, it has resulted in the loss in the ability to do a lot of the things that once came so easily, or those activities that I enjoy participating in.  One example, is the great difficulties that I have experienced in visiting our local high street.  Before this sudden deterioration, I found it so easy to be able to park in the town’s car park and walk the moderate distance towards the top end of the town to visit the shops that I like to browse and buy everything that I need.  However, recently due to the deterioration in the symptoms in my legs (the pain, trembling and weakness) even the short walk from the car park to the shops have felt more like the prospect of walking Mount Everest.

Dealing with symptoms can often feel like an uphill battle...
Dealing with symptoms can often feel like an uphill battle…

As a result, my carer has instead had to use the disabled parking bays in the town centre itself, so that I am able to use the amenities that I need to use, and still be able to go to the shops that I like to visit.  This arrangement has been far easier as they are extremely close to all the shops that I regularly shop at, but in all honesty, some days it is still a struggle to go shopping because of the severe weakness and trembling in the legs.  The dizziness, has also caused a very big obstacle in going out because it has become so intense, and has resulted in me having to wear a hat when visiting places (wearing a hat helps to limit the exposure to triggers that can cause vertigo, double vision or make the dizziness worse).

Last week was a particularly bad week, and a trip to town was cancelled after my legs almost gave way in the middle of town.  Instead, because the pain and weakness was so bad, my carer and I returned to the house and watched a film.  It is bad mornings with chronic illness like these which can be difficult for our morale and self-confidence; and very often it can feel that our day is already over thanks to chronic illness, unable to accomplish anything because of debilitating symptoms and so instead we find ourselves spending the rest of a ‘bad day’ spent in bed or lying on the sofa watching a marathon of our favourite TV series (my guilty pleasure of the moment is One Tree Hill).

However, I recently learnt that it does not have to be this way.  I found a blog post that read:

Today is not over yet.

And it is true.  At the time, I wrote off the day that my legs decided not to work properly and had to spend the morning watching a DVD instead of the shopping trip I had planned.  But that was not the end of the day.  After the film, and after I regained enough strength in my legs, my carer and I took a short drive to a nearby coffee shop and had lunch.  It actually turned out to be a lovely trip out and exactly what I needed to take care of myself and my body against the effects that my condition has had on my life.  And perhaps ‘Today is not over yet’ is a mantra that we spoonies need to remember.  Just because a day has started off bad because of the effects of chronic illness does not mean the day will be bad.  It does not even mean that the day is over.

Finding joy can often be like seeing a rainbow appearing behind clouds...
Finding joy can often be like seeing a rainbow appearing behind clouds…

We can find joy in the little things on the bad days – a letter or card from a dear friend landing on the doorstep, a cuddle from a furry friend, a favourite song on the radio, someone making our favourite meal. Our silver linings can come from the smallest of things.

So, our chronic illness may have meant that we have frittered away our time doing as little as possible, however as the quote suggests it does not mean that our day is over.  We are still here and we are still very much alive and as long as we are it is not to late to do something, to do anything.  It can provide the perfect opportunity to pursue some self-care practices in order to take care of not just our physical health but also our psychological health.  A few self-care activities may include:

  • having a soothing bath
  • meditating
  • reading
  • pampering yourself, e.g. getting hair done or even a manicure
  • crafting
  • can even be as simple as setting limits for yourself

Even if you do end up doing something, it may be something that we hadn’t planned on doing or even wanted to do.  However, it might just end up being something we needed or better than originally planned.  Just like my impromptu visit to a local coffee shop.

So next time, you have had a bad start (or at any point of the day, really) to the day and your thought is navigating towards writing the entire day off as a bad one, just remember:

Today is not over yet.

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