Goodbye to a friend…

Today I am sitting here alone in an empty and quiet house.  And why is that?  Well, sadly just over two weeks ago we had to make the hard decision to put our beloved dog Honey to sleep.

The last picture of Honey taken days before her death
The last picture of Honey taken days before her death

It was a comfort to know that we made the decision that it was in her best interests, as well as taking the pain that she must have been enduring in the final weeks of her life.  However, that does not take away the immense pain of losing a beloved pet, as she was such a big part of our family.  The loss is great, and the loss is even more evident as I am sitting alone in the house whilst experiencing unrelenting symptoms.  Honey was a great source of comfort and companionship on my worst days, especially those that were spent whilst devoid of any human companionship.  Although, if something such as fall were to happen, Honey would obviously be unable to phone or raise the alarm but just the presence of her was a comfort; during the worst falls that I have had over the years, Honey would always come to my aid, well with a quick sniff and lick to ensure that I wasn’t badly hurt before lying down by my side until one of her other humans came home.  On the days where it was just me and Honey and I was unable to get out of bed because of weak and trembling legs, Honey would regularly run upstairs to check on me before settling on her favourite seat back downstairs.  Other times, I would awaken from a nap to find Honey laying on the carpet beside my bed.

Now Honey is no longer with us, and its first time since her passing when I have both been on my own and experiencing one of my worst days and I am feeling much less secure and safe.  I feel like a small child whose security blanket has been snatched from their arms.  Without the dog around to comfort and protect me (yes, every little noise when left alone was seen as a threat to me and would be met with a lot of barking!) it has made this particularly bad day feel that much worse and feel a lot longer than the seven hours I would have spent alone.

For those like me, living with a chronic illness, pets can be a very important presence in our lives.  This is especially considering most of our time is spent in the house, often on our own as those we live with go off to school or work, and we are left in the company of a beloved pet such as a dog.  They help to ease our loneliness that we often feel when living with a long-term health condition, and shines a bright light during the darkest of days living with persistent symptoms.  Honey made me laugh so much, even on the days when it seemed I had nothing to laugh about, but she would only have to look at me with her big, chocolate-brown eyes, or do something funny and it would a big smile on my face.

Honey with a potato in her mouth!
Honey with a potato in her mouth!

Yes, they provide companionship and support, but also they become a substitute for friends in a way, our close allies to attempt to live a full and happy life despite chronic illness.  Our beloved pets, give us their unconditional love and support, and the fact that we live with unpredictable and often severe symptoms does not bother them in the slightest, in fact they often show us more love and affection because we do as they can sense that not all is well with us, and they only want to make us feel better in any way they can.  This has been only been my experience of living with a dog for the fourteen years we had with Honey.  Dogs in particular are incredibly non-judgemental, not caring what we look like or why we have cancelled on plans, unlike a lot of humans that we come across during our everyday lives.

There are an incredible amount of studies that have shown the many health benefits of owning a pet.  For example, it has been shown that pets can lower blood pressure, lessen anxiety and boost immunity as well as increasing exercise for those with dogs when taking them for their exercise!   There are also the social benefits to help kerb loneliness and isolation, such as the ability to meet new people whilst taking a dog for a walk for example.  And yes, I agree that there are numerous health and social benefits to owning a pet, but for those living with chronic illness and/or disabilities they can enrich our lives in so many other ways.

Thank you Honey for always being there during my times in need, and for constantly being a source of comfort and companionship.  Thank you for making life brighter when illness threatened to block out the light,

We will never forget you.

Sleep tight, old friend.

My beautiful dog Honey who provides comfort, laughs, cuddles and kisses during times of illness and being bed-ridden!

 

 

 

 

 

 

 

 

 

RIP Honey (2001-2016)

HAWMC Day 26: Navigating the Ups and Downs of Chronic Illness…

398362_10150737757134254_214524621_n

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 26th April: Make it a great day!

Life is full of ups and downs.  Sometimes, the type of day we have is out of our control, but other times, we can influence how our day is going.  Come up with 5 tips for changing your frame of mind when you’re having a bad day!

There is saying that says ‘Life is like a rollercoaster.’  And this saying, perfectly sums up what it is to live with a chronic illness.

Everyday there are many ups and downs as a result of our chronic illnesses.  There are plenty of ‘up’ moments, little moments that make the day worthwhile and gives us a reason to smile.  However, inevitably there are just as many ‘down’ moments, usually as a result of the onset of symptoms, and other effects that are a result of living with a chronic illness.

Lifes-a-rollercoaster

It is true that we as individuals have control over how we are feeling and therefore influence how our day is going.  However, as those of living with a chronic illness will relate, often our symptoms and our long-term health condition very often dictates the type of day we are going to have.

Take yesterday, for instance, as my Mum has the week off from work, we were planning a trip to a local out-of-town shopping centre, which I was really looking forward to, especially as trips out, particularly those with Mum and Dad are rare.

However, on the morning of the planned trip, I awoke feeling exceptionally weak.  During the night, I experienced excruciating pain in my legs, and in the morning, I found that they were weak and barely strong enough to hold me up, never mind being strong enough to allow me to walk around shops for most of the morning.

Furthermore, the constant dizziness that I experience as a result of the brain stem lesion was exceptionally intense.  As a result therefore, I felt that I was too unwell to go on the planned trip, and instead spent most of the day lying on the sofa beneath my comforting duvet whilst my parents went shopping.  It was disappointing and frustrating not being able to do something that I was so looking forward to, and just one example of not being in control of our how day is going.

So, on these bad days, and the days in which we have no control over our day as a result of illness, how can we help change our frame of mind to make a bad day seem less so?  Here are 5 tips that can help change our day:

  • Practice gratitude: In my experience, using a gratitude journal and practicing gratitude can greatly help change our mindset.  In these gratitude journals it is useful to write at least 3 good things that happened to you during the day no matter how small or insignificant they may seem.  In my experience, in my doing so it helps to change your negative mindset into a positive one, and furthermore it also helps to make you appreciate the little gifts that each day delivers.2010-05-19-gratitudepic
  • Rewarding yourself: After a long day battling with symptoms such as pain, nausea, dizziness is a feat in itself! By planning to reward yourself, for getting through a difficult and stressful day, or for finishing a task despite dealing with debilitating symptoms it can help to give yourself something else to think about besides the symptoms currently being experienced.  Rewarding ourselves gives us something to look forward to despite the stresses of living with chronic illness. The reward does not need to be big or expensive; sometimes it’s finding pleasures in the little things in life.  My favourite reward?  A delicious bar of chocolate to savour at the end of the night!article-2238016-147A49E1000005DC-220_634x358
  • Listen to a favourite song and sing along!: Research has shown that listening to music that you like can actually alter your mood and alleviate feelings of depression.  Therefore, make your own ‘Feel Better’ playlist in your Mp3 player that includes songs that work for you and which lifts your mood.  Choose positive and uplifting songs that you can sing along to, such as the brilliant ‘Happy’ by Pharrell Williams.  It could really help change the outlook for the day! 

    tumblr_mp7uscB9qC1surf6zo1_500

     

  • Honour yourself and your body: On these days, where we feel that we have no control, is the most important time to practice some self-care.  It is important to practice these rituals when we need it the most.  Nuture yourself by taking a warm bath, schedule a massage, cozy up with a book, or relax with a cup of tea and enjoy some quiet time.

7453fb5de216c887510440be824d46b3

  • Smile!: Research has shown that in fact smiling really can turn a frown upside down.  When things seem bad smiling can actually make us feel more positive and happier about the situation, so let’s all try smiling!  And surround yourself with positive people and positive things – the positivity board that I have set up in my bedroom really does help when I am experiencing bad flares as a result of my condition.  It is a reminder that the negative situation is not permanent, it’s only temporary and as everything that is brief, it will soon pass. 

HAWMC Day 14: Trying to take on the world…

hawmc_2012_dayprompt-14

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.

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 seems now, therefore 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, visual disturbances are provoked by certain triggers, and although these symptoms are not constant, they still occur more than they used to.

Therefore, as I never get a break from living with the symptoms as a result, everyday can often feel like a struggle, and can feel that I am 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 is 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
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.

34942308_Next_290666c

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 in the store due to my symptoms.  I also notice that when I am able to 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 are able to take on the world.

 

HAWMC Day 7: World Health Day

428844_10150737740124254_36556179253_11203146_1591025267_n

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.

Tuesday April 7th: World Health Day 

April 7th is World Health Day – so let’s talk about daily nutrition and diet.  After your diagnosis, did you alter your diet or health routine?  If so, how so?  How do you maintain a health regiment?

Water.  Leonardo di Vinci, famously said that “Water is the driver of nature.” Drinking plenty of water and keeping well hydrated is vital for a healthy functioning brain and nervous system.  Therefore, when living with a neurological disorder, hydration and proper nutrition are not only critical to sustaining health but can also prevent a progression of the condition, or worsening of symptoms.

After being diagnosed with a neurological therefore, I take steps to ensure that I drink enough water throughout the day and even downloaded an app for my phone to remind myself to drink a glass of water, as living with symptoms such as fatigue, and brain fog, it can be really easy to forget!  And nowadays, water is generally the main beverage that I choose to drink.  I have never been one to drink hot drinks, such as tea or coffee, although I do enjoy the occasional hot chocolate for a treat!  But knowing all of the benefits of water for not just the brain, but the whole body I am happy drinking it, knowing I am doing something good for my health.

Doctors estimate that we need to drink around 8 glasses of water a day
Doctors estimate that we need to drink around 8 glasses of water a day

Since my diagnosis, however, I would not say I have taken huge alterations to my diet or daily health regiment.  I have been aware more of my diet and the importance of maintaining a healthy weight, especially as the weakness in my legs, and the other symptoms have made it difficult to regularly take part in cardiovascular exercise.  I am now therefore more aware of what I eat, and if we are having a take-away or eating out, then I will choose a dish that is healthy and not overloaded with salt or fat.  Recently, I have been opting to eat dishes with chicken, or seafood, especially king prawns, which not only have plenty of protein but are also low in fat.

Over the past couple of years, I have also developed Irritable Bowel Syndrome, which can result in agonising stomach cramps, bloating, and diarrhea.  As a result of this new diagnosis, I now have to be careful what I eat, especially for any potential trigger foods.  For example, dairy products can often be a trigger for an IBS flare, in particular cream and to have ensure that I ask for any desserts or my order of a hot chocolate not to be topped off with the whipped cream.  Luckily, in terms of the IBS, I have found a great friend in peppermint tea, as if a bad flare of the symptoms occur, after a mug or tea of the tea, I often find that the symptoms such as the stomach cramps eases off.  Yay for peppermint tea!

Would recommend for anyone with IBS to keep some peppermint tea handy in case of a flare
Would recommend for anyone with IBS to keep some peppermint tea handy in case of a flare

Exercise, as previously mentioned is often very difficult when living with a chronic illness, due to debilitating symptoms, such as pain, fatigue and weakness inhibits us to be able to do so.  However, last year I joined, what is known as a feel-good factory.  It is different from a conventional gym, as the equipment there consists of toning tables rather than giving a cardiovascular workout.  These toning tables are designed to rebuild muscle strength, tone, improve posture, increase circulation and mobility, just some of the examples of the benefits of the equipment.  And as the equipment consists of chairs and beds, I am not at risk of falls due to legs giving way.  Although I may not have seen improvements in the muscle strength and tone in my legs, it may be that without regularly working out at the feel-good factory, the weakness may be even worse.

FeelGood Factory in Llantrisant - photograph from their Facebook page
FeelGood Factory in Llantrisant – photograph from their Facebook page

All these steps, may not have had any effect on the symptoms caused by my neurological condition, which is evident by the recent worsening of my symptoms, however by taking small steps in maintaining a healthy regiment such as drinking plenty of water, and eating a healthy low-fat diet I can not only have control over aspects of my health that I can control but also helps to avoid even more health problems often caused by an unhealthy lifestyle.

HAWMC Day 4: The unpredictability of a predictable life…

389604_10150737726009254_36556179253_11203097_1278961839_n

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 4th April: Creature of Habit 

What good habits (health or otherwise) do you have?  Do you have a routine that you follow every morning?  Are there any bad habits you wish you could break?

As someone living with a chronic illness, my obvious morning routine consists of making sure that I take my daily medication to help manage the symptoms caused by my neurological condition.

Routine is something which is defined as ‘a sequence of actions regularly followed’.  Therefore, a routine follows a predictable pattern.  The only thing predictable about living with a chronic illness, however, is the unpredictable nature of our daily lives.

As a result, being able to maintain a regular routine is extremely difficult as we never know how we are going to feel from one day to the next.  We do not know whether our bodies are going to cooperate on that particular day.  In relation to my own experiences of living with a chronic illness, due to spastic paraparesis, my legs are weak and often there are days that I am unable to get out of bed due to the severity of the weakness.  When these days occur, therefore any routine and habits that I do follow become impractical.

It is not only the physical symptoms that make it difficult to successfully follow a daily routine but other symptoms such as pain, insomnia and fatigue are also obstacles in the ability to maintain a regular routine.  Due to fluctuating pain levels, I often find it difficult to sleep.  As a result, my sleep patterns become disordered and out of kilter; finding myself waking early in the morning one day and sleeping in late the next.  And fatigue is the biggest hurdle in my opinion as very often you feel too exhausted to be able to do anything besides lying down and watching television!

In terms of wishing if there were any bad habits, I would like to break, I suppose I would choose to checking my phone less!  I do check it often, as it often feels that it is my biggest connection to others (through social media) and the world outside my house.

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

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.

30 Things About My Invisible Illness You May Not Know 2014…

imgres

I originally completed the ’30 things you may not know…’ meme back in 2012.  However, I thought it might be fun to complete these 30 questions again, not only to meet new (and old!) fellow bloggers but to also see how my answers have changed during the past two years.  It is true that as my condition has progressed and am now have the need for mobility aids such as a crutch and sometimes a wheelchair, my condition it could be argued is no longer invisible.  To some extent this may be true, however, I have also found that when I do use these mobility aids I do so with suspicion from others because I look ‘fine’ and in their minds I have no need for such assistance.  It’s as if they are expecting someone with a legitimate illness or disability to have a specific mark, branding them as such.  It therefore does raise the question about what exactly defines an ‘invisible illness’ doesn’t it?

  1. The illness I live with is…
    A neurological condition known as a long-standing brain stem lesion, as well as spastic paraparesis.  However, there is some debate that there may be more going on and therefore am going through tests and seeing more consultants to determine this.
  2. I was diagnosed with it in the year…
    2010
  3. But I had symptoms since…
    As long as I can remember, I am certain that I have had the stiffness and weakness in the legs since birth but went undetected for so long because I hadn’t realised that there might be a problem with my legs as I never knew anything different!  The vertigo and dizziness started in early infancy also but the exact age I am unsure of but I was very young.
  4. The biggest adjustment I have had to make is…
    Accept the limitations regarding my mobility and accept my need for a wheelchair.  I am often incredibly stubborn and will refuse to use my wheelchair, and by the end of the day I am in a lot of pain as well as having trouble moving around because of severe weakness in the legs.
  5. Most people assume…
    That because I am able to stand and walk sometimes when I have the wheelchair then it must mean that I am faking it all for sympathy or because of laziness.  Many people need to learn that because a person uses a wheelchair does not automatically mean that they are entirely dependent on one.
  6. The hardest part about mornings are…
    It has to be getting up out of bed!  Fatigue is another symptom that I suffer as a result of my condition and therefore it is very difficult to get out of bed as I still feel so tired.
  7. My favourite medical TV show is…
    It’s still has to be Grey’s Anatomy, although I am also addicted to Private Practice!!
  8. A gadget I couldn’t live without is…
    This is a tough question as like most people I own several gadgets which are all so useful in my daily life living with chronic illness.  But having to choose just one I would have to say my smartphone (Samsung Galaxy Note 3) as I am able to do so much with it and can be with me wherever I go.  For instance, thanks to applications such as Facebook, Twitter, Instagram and Pinterest I can work on things related to my blog and keep in contact with fellow spoonies, which is fantastic on days which are struggle and need someone else to talk to.  More than this I can take photographs, be reminded to take medications on time, play games, watch videos or listen to music – generally be entertained and distracted from pain, dizziness, and life from a chronic illness in general!
  9. The hardest part about nights are…
    Trying to switch off from the pain and trembling that I experience in my legs due to the spastic paraparesis.  I often experience insomnia because of these symptoms and it’s even been known to wake me up!
  10. Each day I take __ pills and vitamins…
    9 pills
  11. Regarding alternative treatments I…
    Do not use any, as in my case the condition is not treatable even with conventional medical treatments, only can attempt to control the symptoms.  I did enjoy a lovely and relaxing massage whilst on holiday earlier this year which I did find help with the pain
  12. If I had to choose between an invisible illness or visible I would choose…
    An invisible illness could be more positive in the way that people are more likely to treat you as everyone else
  13. Regarding work and career…
    I would love to have a career and full-time job but often worry if anyone would hire me due to the amount of time that I am unwell and also would question if I could hold down a job due to my legs giving way a lot and the inability to stand for long.  Am also not allowed to drive due to the severity of the dizziness and vertigo, and public transport is not an option as it requires standing for a significant period of time
  14. People would be surprised to know…
    That despite living with a neurological condition and dealing with severe symptoms everyday that I still manage to be positive!  Many people expect me to be depressed because I am stuck inside of the house for most of my time, and so am surprised that I am positive and upbeat.  Also, a lot of people love my positivity board which contains letters from friends, cards and posters with positive quotes and photographs of happy memories, all of which help me stay positive.
  15. The hardest thing to accept about my new reality has been…
    I am not like everyone else my age and cannot achieve the milestones that I was once looking forward to, passing my driving test being one.  Another example, is going out at night with friends, which I am unable to do due to the weakness in my legs, as well as the intense fatigue I experience at night.  It has also been hard to accept that I may need to use a wheelchair as my legs keeps becoming worse over time.
  16. Something that I ever thought I could because of my illness which I did was…
    It has to be going on a cruise.  Not only did I think it was out of my reach due to the severity of the dizziness relating to my neurological condition, but also I never expected me to be able to handle it, but I did and looking back the holiday was a fantastic experience, and between you and me we have just booked to go on another one next year around the Canaries!
  17. The commercials about my illness…
    Are non-existent as the condition is rare.  In fact it is so rare that I haven’t met anyone else with the same condition.
  18. Something I really miss doing since I was diagnosed is…
    Going on shopping trips with my Mum to our local city centre (Cardiff).  Since my legs have become so much worse am unable to go as a lot of walking is involved as well as not being able to queue in the big department stores as my legs often give way.  Also, large cities such as Cardiff can be very difficult for me to handle because of the dizziness, as it makes me very disoriented due to the large crowds, fluorescent lights in the shops and high ceilings and so on.
  19. It was really hard to have to give up…
    Doing all the exercise that I enjoyed such as going on my exercise bike or going on walks as not only is it beneficial physically, I often found it helped with mental well-being.  I also miss walking my dog as it’s something that both her and my Mum and I enjoyed doing together.
  20. A new hobby I have taken up since my diagnosis is…
    Blogging and writing.  If I had not ben diagnosed with this neurological condition then I would never have started blogging or meeting all of the wonderful people I have as a result of my writing.  I also never would have had the opportunity to contribute to the inspiring digital magazine ‘The Pillow Fort Magazine’ especially for those battling with chronic conditions.
  21. If I could have one of feeling normal again I would…
    Spend the whole day out of the house with dinner afterwards and maybe headed to a party after that!
  22. My illness has taught me…
    To listen to my body, and that we all know when there is something wrong.  To never settle when doctor’s are telling you there is nothing wrong when you know there is.  To keep moving forward and to never give up until you find a doctor that will listen and is determined to find out what is wrong.
  23. Want to know a secret? One thing people say that really gets under my skin is…
    “There are people much worse off than you”.  Yes, I understand this but it still doesn’t help!!
  24. But I love it when people…
     
    Listen to me and tried to understand even though it can be difficult due to the unpredictable and unusual nature of the illness.
  25. My favourite motto, scripture, quote that gets me through tough times is…
    It has to be “Life isn’t about waiting for the storm to pass but learning to dance in the rain”
  26. When someone is diagnosed I’d like to tell them…
    It is not the end.  You still have a lot to offer just need to be open to new opportunities.  You need to find a new normal instead of focusing on the past and everything that once loved doing but can no longer do.
  27. Something that has surprised me about living with an illness is…
    Although that I do not know anyone else with the exact same condition, I am still not alone.  There are many other people who experience the same struggles as myself and whom I can learn from and can support each other through the tough times.
  28. The nicest thing that someone did for me when I wasn’t feeling well was…
    Sending me a care package with things that I love and a beautiful card to add to my positivity board
  29. I’m involved with ‘Invisible Illness Week‘ because…
    To spread awareness of the difficulties faced when living with a chronic invisible illness; to educate people that although you cannot see the problem does not mean that it doesn’t exist.  That people with invisible illnesses are not faking or are lazy and that we should be careful when making snap judgements about people.  It’s a cliché but it’s true: ‘You cannot judge a book by its cover”.  It would also be nice to connect with others living with invisible illnesses like myself for support and friendship.
  30. The fact that you read this list makes me feel…
    I feel validated and supported so thank you!!

Lesson Learned! Don’t walk down the stairs with trembling legs…

483468_10150737753774254_36556179253_11203223_1461372361_n

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 prompts given.

Today’s prompt reads as follows:

Lesson Learned…What’s a lesson you learned the hard way? Tell us a time when you made a mistake and promised never to make the same mistake again

There are many lessons that you learn when diagnosed with a chronic illness, such as acceptance is not about giving up and you are not defined by your diagnosis.  But it is not these big life lessons that you learn whilst living with a chronic illness but you learn everyday on how to live with your specific condition.  For example, I have learnt that in order to cope better with the dizziness that is a good idea to wear a hat, with a fisherman’s hat being the preferable choice, as it blocks out more visual stimuli than other styles.  I have also learned to tell when I need to use the wheelchair, or when I need to take a nap.  However, one lesson that I should have learnt a long time ago is one which I learned the hard way…

The style of hat that is most effective in lessening the severity of the dizziness
The style of hat that is most effective in lessening the severity of the dizziness

The lesson happened one night in late February, Mum and Dad had gone out to see a concert and so I was left home alone.  On that day, I remember it was one of my bad days, with the dizziness and the trembling in my legs particularly bad, and so before they left my Mum had done the washing-up as I was unable to stand for long.  And so they left me in front of the television with a packet of sweets; as my legs was so bad, I probably should have known just to stay lying on the sofa and find a film to watch.

But instead, I thought it was a good idea to walk upstairs to grab my Kindle as there was nothing to watch on the television and walk downstairs.  However, instead of walking down the stairs, I fell down them as I had suddenly lost all sensation in my legs (probably should not have wished for the trembling to stop!).  Fortunately, I was fine – a little shook up, but I hadn’t broken anything.  Well, I hadn’t broken any part of my body, but the Kindle that I was bringing downstairs?  That was indeed broken – the screen had cracked and so became completely unreadable.

The casualty from my tumble down the stairs...
The casualty from my tumble-down the stairs…

 

As an avid reader, this really upset me as it was one of my gadgets that I regularly use, and as I was saving towards the holiday I could not afford to replace it.

The story does have a happy ending however; after it happened I talked about the incident on social media, I think partly as I was on my own and still shook up about what happened and it was my way of having company, or at least some version of it.  A few days after it happened I was sent an email from an employee at Amazon UK who had heard about my fall via social media and the company was offering me a replacement Kindle free of charge!  It was an amazing act of generosity that I will never forget and I am now a happy owner of a new Kindle and reading books on it to my hearts’ content!

But a lesson that I learnt from the incident is when the weakness and trembling is as bad as it was that night, then to stay sitting or lying exactly where I am and not to exert my legs in doing more they can handle.  An important lesson but one which I learned the hard way! (And you will be happy to know that I no longer walk down the stairs holding my Kindle!)

A special thank you to Amazon too!!

What are some of the lessons you have learned during your life with chronic illness?  Are there any that you learned the hard way?  As ever would love to hear your thoughts and comments on the blog post, or the blog generally.  Please feel free to leave your comments below…

 

 

Surviving Christmas Shopping with a Neurological Condition…

nhbpm_daycount-27

Welcome to the twenty-seventh day of the National Health Blog Post Month Challenge hosted by WEGO Health.  Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Black Friday and Holiday Shopping: In preparation for Black Friday holiday shopping, give some advice on how to survive the long lines and packed stores.  How do you find the best bathrooms?  How do you stay comfortable on your feet?  Give us some tips before heading to the stores.

Lets's start preparing for the holidays...
Lets’s start preparing for the holidays…

Living with a neurological condition, and the symptoms that go along with it, such as the constant dizziness, weakness in legs and the fatigue, can make Christmas shopping a complete nightmare!  Shops are incredibly busy, crowds of shoppers swarm around like flies, and the queues are exceptionally long.  So, how can other people living with a neurological condition like myself survive Christmas shopping?   Here are some tips to survive this time of year:

Surviving Christmas Shopping with a Neurological Condition...it can be done!
Surviving Christmas Shopping with a Neurological Condition…it can be done!

Take lots of breaks when out shopping

As Christmas shopping, and generally being at shops during this time of year, can be very stressful and demanding, it is important therefore that a person living with a neurological condition paces themselves.  Instead of visiting shops during the busiest times, such as on a Saturday, perhaps it is best therefore to consider doing your Christmas shopping on a weekday instead.  In addition, as Christmas often means a lot of presents to buy, it is important to take regular breaks so that it doesn’t all become too much.  Find benches or seats to sit down on, or treat yourself to a hot drink at your favourite coffee shop every so often. By taking breaks, and going to the shops when it’s quieter will be firstly less stressful, and is a sure way of conserving much-needed energy,especially if fatigue is an issue for you.  Also, you will be less likely to burn out and become unwell, which certainly would spoil your Christmas Day.

Wrap up Warm during shopping trips to avoid unnecessary pain...
Wrap up Warm during shopping trips to avoid unnecessary pain…

Wrap up warm…

Many people with neurological conditions, such as mine, or other conditions such as MS, for example, can exhibit symptoms such as neuropathic pain in various parts of the body.  Additionally, many people report that their neuropathic pain, worsens during the cold weather.  Therefore, if this sounds like you, I would advise that you wrap up warm when Christmas shopping as it can be very cold walking around all of the shops, and wearing thermals and other warm clothing such as scarves, hats and gloves will help not to worsen the pain.

Use a ShopMobility Scheme to help conserve energy and help you get around this Christmas
Use a ShopMobility Scheme to help conserve energy and help you get around this Christmas

Consider hiring a wheelchair or mobility scooter, or take your own to help you get around…

With the neurological condition that I live with, I experience severe weakness in the legs, and as a result of this my legs can suddenly give way,  causing bad falls.  In addition, to the weakness; fatigue can also be an issue for me and other people living with neurological conditions.  To prevent yourself from becoming too tired or you find that you are unable to walk far because of pain, weakness or fatigue, it may therefore be worthwhile in taking your wheelchair during trips Christmas shopping so that you can stay out for longer, and not become as exhausted as you would normally.  If, however, you do not have your own wheelchair, you may instead consider hiring a wheelchair or mobility scooter from a branch of Shopmobility.  Shopmobility is a scheme which lends manual wheelchairs, powered wheelchairs and powered scooters to members of the public with limited mobility to enable them to still visit leisure and commercial facilities within local towns, cities or shopping centres.  Furthermore, the scheme is for anyone – from the young to old; from temporary to permanently disabled.

To find out more and find where your local Shopmobility scheme is; you can visit their website at http://www.shopmobilityuk.org or by phoning 0844 41 41 850.

Planning is key for an organised and stress-free Christmas...
Planning is key for an organised and stress-free Christmas…

Be organised…

If memory issues are as a result of a neurological condition, it may be advisable to make a list of all those you have to buy for, and perhaps even ideas for gifts to buy them for Christmas.  This not only ensures that you don’t gorget anyone you have to buy a present for, but can also save time whilst out at the shops.  For example, if you already know what you want to buy them, then when you go to the shops you just have to find the items and then pay at the till – saving you time and much needed energy.  If you do not know what to buy them, but already know what shops they like, then you can even use the internet to research for gifts before heading to the shops.  By thinking ahead, you also reduce the amount of pressure and stress placed upon you during the season.

If the stress of Christmas particularly gets to you, then perhaps one of the best pieces of advice for anyone with a chronic illness is to start as early as possible.  Perhaps even starting your shopping for the next year in January when there are massive savings to be had during the sales.  By doing this and buying little things during the year, means there is much less to do when Christmas season does start.

If mobility and fatigue are a real issue for you..then save your legs and feet and surf the internet for all your gifts!
If mobility and fatigue are a real issue for you..then save your legs and feet and surf the internet for all your gifts!

If all else fails…turn to the internet…

If however, heading to the shops, with all the crowds makes you tired and stressed, or if your mobility problems are so severe that you cannot walk far, you may want to avoid the high street altogether.  If you have the internet at home, then why don’t you log-on and browse all your favourite stores whenever you want and at your own leisure?  Enjoy looking at the product and gift ideas for Christmas whilst snuggled under a blanket, with a mug of your favourite hot drink and chocolates.  Alternatively, you can browse mail order catalogues, and are another home shopping option that will help save energy – look out for special offers, free delivery and online-only deals that could also save you money, as well as conserving your energy levels.  The internet, is also a great opportunity to find gifts that are unusual and may be hard to find on the high street.  For example, I have just discovered a gorgeous online retailer, that sells some unusual and beautiful gifts for every member of the family (even well-loved pets!) and which suits all budgets.  Find out more by logging on to ‘Not On The High Street‘.

Alternatively, you can also use a ‘Click and Collect’ service that many online high street stores now offer; and then ask a loved one if they wouldn’t mind heading to the shops and picking your shopping up for you!

So, those are my tops tips for surviving Christmas Shopping with a neurological condition!  Do you have any other tips that could help people survive shopping during the season holidays whilst living with a chronic illness?  As ever please feel free to add any comments and suggestions below…

 

Chronic Illness and its awkward situations can be embarrassing but they can also make us grow…

nhbpm_daycount-16

Welcome to the sixteenth day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads:

Well, that was embarrassing…  What’s the most awkward situation your health condition ever put you in?  (Don’t be bashful, we’re all friends here).  Maybe you can look back on it now and laugh, but it wasn’t so funny then

I suppose, one of the benefits of living with an invisible health condition is that when you are out of the home and walking amongst the healthy, others are not aware that you have a chronic illness and you are able to bask in the pretence that you are just like everyone else.  I used to be able to do just that; walk around as if I was perfectly healthy, ignoring the dizziness, pain and weakness that was reminding me that I wasn’t like everyone else.

However, after the condition started to worsen, the awkward phase of my neurological condition began to present itself – frequent fall in public.  Yes, it happened in shops, at home, at houses of friends and family as well as the centre where I used to volunteer – my legs would suddenly give way which resulted in my entire body collapsing to the floor.  I found this extremely embarrassing , especially at the times when I was unable to get up straight after the fall because of the weakness in the legs.  Looking back I do not think it was just the situation that I found awkward and embarrassing, which I did especially given my age and partly because at that time I didn’t know what was wrong with my body.  No, it was also the attention that it caused from others who were around, the stares and the fuss that these falls caused; it was especially embarrassing when it happened in shops and being helped by elderly people who were much older and obviously fitter than myself!

Of course, this happened, not just the one time but happened extremely frequently for several years.  Then, once it happened right in the middle of a popular clothes store in town when I was out with my carer, and because of the weakness in not just my legs but throughout my entire body, I was unable to get back up for approximately ten minutes and so had to be helped by several members of staff and my carer to a stool that they had lent me.  The shop at the time was quite busy and there were several members of staff, so as it happened in front of so many people was very embarrassing especially given the stares and people asking me if I was alright and if there was anything they could do (don’t get me wrong I find that to be very kind and thoughtful but still it doesn’t make any less embarrassing!).

imgres-1

Looking back at this particular incident however, I now realise that it was an important part in accepting the deterioration in my mobility and overall condition and finally accepted the need for the wheelchair.  Perhaps, it is an incident that was awkward but one which was enlightening and shone the light on an aspect of my life that was changing but could do something to help me adapt to the new situation.  It also shows that awkward and embarrassing situations, although can be upsetting and distressing, they can prove to be situations that cause us to learn and grow…

Has your health condition caused you to have an embarrassing incident?  Would love to hear your comments and thoughts as ever!  Please leave any comments below!…