Back in the driving seat…

As I have been enervated by symptoms, almost leading to the feeling of being trapped in a prison surrounded by invisible tormentors.  However, I was not only trapped inside my own body; a metaphorical prison whilst enduring persistent and unrelenting symptoms but these were also keeping me inside my home due to their severity as well as the fear of the possibility suffering another fall in public.  It was as if the symptoms were acting as prison guards, keeping me imprisoned in my home and the same four walls in which I already spent the majority of my time to begin with.  I longed for adventure, to experience activity and excitement, like the characters in the books that had become my constant companion as I convalesced in my bedroom.

Adventure. Spontaneity.  Two words that is not synonymous with life with a neurological condition.  Going on an adventure when living with any chronic illness requires planning with almost military precision, and is reliant on a number of factors such as how you are feeling on the day that has been set out for the planned adventure.  Personally for me, big adventures are also dependent on whether or not my legs are being cooperative on the day, and if they are somewhat weak and the wheelchair is needed then it needs to be a mild dizzy day so the motion sickness does not present itself!  Spontaneity is near possible when living with a chronic illness!

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During a short reprieve from my condition and its accompanying symptoms, I made the decision to make a trip to Hay-on-Wye with my carer on a sunny afternoon in late May.  I say that it was a reprieve, but the symptoms were very much there but the severity of them was not as bad as it had been, so it did feel somewhat of a reprieve but at this point it felt that my condition and its symptoms had been very much in the driving seat dictating everything, from how I was feeling to what I could and could not do and I was tired.   I was ready to finally take back control and be the one in the driving seat instead of being the passenger on my own ride.

Hay-On-Wye is a small market town located in Powys, West Wales is a place that I had been before, but have desperately wanting to return to since.  It’s most famous as being the town of books with an impressive number of bookshops adorning the streets of the quaint little town.  As a massive bookworm myself, this beautiful place is like a little piece of heaven for me, and I was really excited to make a return to this mecca of literature.

The many wonderful bookshops of Hay-on-Wye
The many wonderful bookshops of Hay-on-Wye

The day itself was beautiful with majestic blue skies with a warm gentle breeze.  It was a beautiful start, the only problem being my extremely trembling legs, as unfortunately the place being somewhat unsuitable for a wheelchair, meant that I had to rely on what felt like incredibly unreliable legs.  But even that wasn’t going to stop me as somehow despite how tough things have been, I finally found my sparkle again.  And despite wobbly legs, several near falls and major fatigue I had a great time in this wonderful little town.  I  was able to browse the many quaint and unique bookshops, treated myself to lunch and just sat down and soaked in the sights and a little vitamin D.  It was a great day; probably the best I’ve experienced for a long while.

Above all I learnt just how much control I allowed my condition to have on my life, yes, some of this was because I had no physical control over this such as the severe weakness and trembling in my legs.  However, I let myself believe that because of the severe symptoms I was not able to do anything at all.  I thought this was my reality, when in fact it was only my perception of the situation.  On the day I discovered determination and strength I never knew I possessed. It felt like pain had my legs trapped in its vice-like grip, but determined to sought out lots of books, I carried on.   Yes, my legs were weak and uncooperative, ready to give way in a blink of an eye, but there are plenty of ways to still an enjoy a day out.  The use of a wheelchair, for example, or by taking regular breaks as we did in Hay (and the perfect excuse to enjoy a hot chocolate!). We may not be able to enjoy a long day out, or a day out like we used to but with appropriate accommodations we can still enjoy a day out somewhere special.  Are there any perceptions regarding your condition that you think to be reality?

Admittedly, I perhaps overdone things that day given the fatigue and amount of pain I experienced days after but even that cannot tarnish the memories and the experience of the day.  And above all it felt brilliant to be back in the car, even if I’m not always in control…

 

Surviving Christmas Shopping with a Neurological Condition…

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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…

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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!).

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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!…

A life changed through illness…

According to the Oxford English Dictionary; the definition of change as a verb is “make or become different.”   As a noun, change is defined as “an act or process through which something become different.”  In other words it is a transformation from one state to another.

Being diagnosed and living with chronic illness can be perfectly described by the word ‘change’ as our whole world is transformed from one of normality to one which includes numerous doctors and hospital visits as well as daily treatments.  But transforming from being healthy to one with a long-term chronic illness is not the only change that occurs when illness takes ahold of the patient.  Relationships, hobbies, like and dislikes as well as daily routines are all impacted by chronic illness and can change as a result.  Personalities can change also, from someone who was outgoing, bubbly and happy can change to someone who is quiet, reserved, and has a low mood as a result of being diagnosed with a long-term health condition.  Once, a person loves nothing but a night out with friends, but often when a chronic illness sets in then a night-in wearing comfortable pyjamas and watching TV seems like the idyll.   Illness changes every part of a patient’s life.

But how has it changed my life?  This is a great question, especially the long-term condition which I live with started during infancy.  In this instance the changes have been more subtle; slowly progressing but changes nonetheless.  Before my condition started progressing and becoming worse, I had no problems with walking, sure, my legs started feeling stiff and uncomfortable but other than that I could walk fine.  Then, the condition progressed, making my balance worse as well as worsening pain and weakness in my legs.  And as a result mobility accessories was another change that presented itself in my life – first was my cane, then the crutch and now I rely on a wheelchair when I go out.

Relationships in my life has also changed, once I was a dutiful daughter, happy to complete chores to help out around the house, now however, I am increasingly reliant on my parents for help  – help cleaning around the house as well as my bedroom, help making meals and sometimes even simpler tasks such as making a sandwich, as well as helping me get to the bathroom when my legs are really bad.  Often it feels as if our relationship has changed from that of parent and daughter to that of carer and patient.  Friendship has been a constant change too in my life; often than not, friends don’t seem to stay very long in my life, whether or not they get bored with me saying no to day or nights out because of illness.  Or perhaps they feel resentment for the need to pick me whenever we make plans because of my inability to drive due to my condition.

A lot of the friends I have met through the blog and Twitter who are also battling chronic illness has also talked about the change in their lives but I like to think that although there are a lot of negative changes that illness inflicts upon our lives it also has many positives, such finding each other through illness and finding connections between our lives because of it.  Through illness it has helped us make very real, supportive and life-long friendships that will long remain.  But also, living with a life-long chronic condition can also make us more understanding,  and emphatic towards others.  Illness does not mean the end but can change us into more beautiful and understanding human beings.  Perhaps this can best be summed up by the proverb:

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This post is for the October edition of the Patients for a Moment Blog Carnival which is being curated by Life with RA is a Pain.

WEGO Health Advocating for Another Carnival: These are a few of my favourite things!…

Welcome to the second post in the WEGO Health Blog Carnival. Today’s prompt says the following:

List time! Write 5-10 of your favourite things about your health community. Celebrate their uniqueness and be sure to tell us why those are your favourite things.

Today’s prompt asks us to reveal a few of our favourite things regarding our health community in a Sound of Music style!

What would be some of my favourite things regarding my health community as a whole?

Well number one would definitely be that I feel the community that I am a part of is that the people are much more understanding and less judgemental. Living with an invisible chronic illness makes you far more understanding of others and their circumstances, and less judgemental of certain behaviours or symptoms exhibited which healthy people may see as being odd. This is a really positive attribute not only for health activism but for life in general. And I believe that living with a chronic illness also teaches tolerance. Often people are suspicious and fear those who are different to themselves, those who are not congruent with the image that one holds of themselves. However, those who are chronically ill or disabled are brought together with an understanding of the difficulties experienced and which cannot be broken by those which more commonly divide – such as colour of skin, race, nationality, gender and so on. We are our own community, our own little family.

Another thing I love about the community is having to use time effectively – I used to procrastinate all of the time, always putting off chores until tomorrow. But now, as I never know how I will feel from a day-to-day basis I need to complete chores or tasks that need to be done when they arise, as I may not able to do them tomorrow. Also, comes in handy when I am able to go shopping – hated those days when Mum and I would spend endless hours trawling through different stores. This for me, and many others is now longer an option, so now am only able to go in and get what I need as quickly as possible, not wasting any time and not depleting my minimal energy. Then I have more time to spend on the things that I love (and able to complete without pain or fatigue) such as reading, writing, or simply watching my favourite feel-good film. Having time for ourselves is so important when living with a chronic health condition, important for our psychological well-being and great to do something that we enjoy during periods of remission or feeling well.

Another thing I love about my community is how everyone now embraces technology and social media. These new technologies and social media sites such as Twitter and Facebook, allows us all to stay connected with each other, posting comments of support through the bad times and send congratulatory messages during the good times. Many people assume the Internet is used for bad, and is a force for negativity and evil, such as ‘trolls’ sending messages of hate to others. However, the Internet can be used for good, it can be a positive form of communication. For me, and many others within the health community, going out of the home proves to be very difficult and so using the internet and the different social media that exists as well as support forums makes it possible for much-needed social interaction. And has an even more beneficial use if you take into account rare conditions such as mine, in real-life it may be very unlikely to meet anyone with the same condition but the Internet may make it possible to connect with the same condition. One group I participate in even uses Skype for group chats with members, which brings us all closer together and provides a more interactive experience.

The next point, I would say I love is being able to gain practical support from my health community. Often I find myself not knowing the best solution to a problem that I am experiencing; so asking others and brainstorming ways around the problem to find an effective solution which may even lead to more productive and independent life. And another great thing about being involved within the health community is the reciprocity – learning different tips and tricks on how to cope and overcome different obstacles and passing these onto others! Sharing information is so important in terms of health advocacy.

And the last thing what I love and think is great about my health condition – is that we are all unique and special in our own ways. Just like a snowflake, no two patients are alike and each exhibiting a different set of symptoms. Everyone is beautiful and special.

Hope you enjoyed the post – feel free to leave any comments….