And the nomination goes to…

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Welcome to the final 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:

That’s a Wrap!  Nominate someone for a Health Activist Award and write a post about why you nominated them!

 

I nominated someone for the ‘Health Activist Hero Award’ sometime ago.

The person was a very good friend of mine, Anya.  Anya also has her own blog ‘The Patient Patient‘.   Anya writes about living with several long-term health conditions.  However, this is not the only focus of her blog, but she also writes about the self-management of such health conditions, and how patients can and should be involved in their own care.

Not only does Anya write so eloquently and passionately about the issues she discusses in the blog, but she also chosen a career path in this particular field, and also mentors others, as a tutor for Self Management UK (formerly the Expert Patient Programme, and also speaks to healthcare professional and students regarding patient involvement and the biopsychosocial model of disease.  But, alongside all this, Anya is a great friend and there for me and others who are experiencing tough times due to long-term health conditions.

In my opinion, Anya is a Health Activist Hero who really deserves to be recognised for all she does; and for helping give patients a more active role in their own care, and educating future doctors to the importance of patients and how they can be an equal participant in their own care.

To nominate someone for a WEGO Health Activist Award; you can do so by visiting: http://awards.wegohealth.com/

Tooting that Horn! What makes me awesome?

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Welcome to the penultimate 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 read:

Toot that Horn!  Want to hear a secret?  You’re awesome!  (It’s actually not even really a secret).  This is going to be hard for you, O Modest One, but you gotta give yourself props today!  Wrote three things you love about yourself – things you’re great at – or just want to share.  Don’t you dare signpost or undercut those self-compliments!

Apparently I'm awesome?

Apparently I’m awesome?

I will admit, I have struggled so much with this prompt.  I am not one for, tooting my horn so to speak, and struggle with making lists of what I love about myself; or about what I am good at.  I even tweeted about this, as I was so stuck:

A great friend of mine, Anya replied to this:

The next day, whilst checking my email, I came across an email from Anya, who came up with a list of things that make me awesome.  In the email, she writes:

  1. You always support and think of others even during your own tough days
  2. You always tweet kind things
  3. You always rise even after falling
  4. And you rise consistently well!
  5. You are dancing beautifully despite the relentless rain and storm

 

 

What do I think makes me awesome, the question asks?  Here are some that I finally managed to come up with!

  1. I think that I am considerate towards others; for example, even when I am not feeling well, or even when my legs are weak I will still complete chores around the house to lessen the amount that my Mum has to do around the house.  I regularly do the washing-up, when my health allows, even when the trembling is bad so my Mum, who has worked all day, doesn’t have to do it.
  2. Keeping up with the blog and other social media is pretty awesome!  And on top of that I am involved with several project such as Life 4 Living, Neuro Nula and Unseen Magazine.  I like to keep busy, and advocate of==for other people with chronic health conditions as well as raising awareness for neurological conditions.  You could say that I am helpful?
  3. I still remain positive despite living with a chronic illness, which is pretty awesome as all of you will know living with any illness is hard and difficult, especially during the tough times.  I have even designed my own ‘Positivity Board’ with little notes and positive sayings to look at when I am in bed due to illness, and to generally cheer me up when times get tough.
My Awesome 'Positivity Board'

My Awesome ‘Positivity Board’

Those are the things that are awesome about me – through my own eyes and those of a close friend!  Are there other things that we have missed, that make me awesome?  If you have any then please comment below, and make my day as well as giving me something lovely to read and remind myself when I am struggling or just generally having a bad day…

A Time to Give Thanks!!…

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Welcome to the twenty-eighth 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:

A Time to Give Thanks: What’s the one thing you’re most thankful for?  Write a list of three things that you’re thankful for, excited about, or inspired by.

Although it’s extremely difficult living with a chronic illness, it still is however important to remain grateful and give thanks for everything that is good in our lives.  We must do this in order to remain positive and upbeat despite our journey through illness so we remain resilient.  So what are the things that I am most grateful for despite living with a neurological condition?

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I am thankful for my friends and family.  Having material items such as tablets, and other computer devices to stave off boredom and to keep me occupied whilst stuck in bed, however, it is the people in your life that are constantly there for you and make travelling the road of chronic illness so much easier.   For example, I blessed to have amazing and supportive parents.  Parents who are always there for me; taking me to places where I need to go, or do little jobs that I am unable to do.  For example, whenever I am stuck in bed, my Mum or dad regularly comes to my room and asks whether there is anything I need, such as a drink or something to eat, and they will bring them up to me, without any complaints.   In addition, a couple of weeks ago, when I was going through a particularly tough time with my illness, and as a result was constantly in tears, my Mum was there for me, whenever I needed her – she would phone me from work to see how I was, or would give me a cuddle, and wipe my tears for me.  My parents make it easier to live with my condition everyday, and no amount of words can adequately express my thanks and gratitude to them or how much I love them.

Then there is my dog Honey, and although she can be incredibly cheeky, and naughty at times, she is at other times the most sweetest, caring and loyal dog.  For example, whenever I am having a bad day, or feeling depressed, she is giving me cuddles and kisses.  Or, if my legs are particularly bad and I am falling over constantly; she is there by my side instantly to make sure that I am OK and not hurt.  And then she will follow me around; never wanting to leave me out of her sight until I am safely lying on a sofa or on my bed.  Last week, when my parents were out of the house doing shopping and other chores, and I was unable to get out of bed, Honey would regularly run up the stairs and peer into my room to check on me and satisfied that I was fine, she would return downstairs to lie on the sofa.   Once I fell whilst on my own, and was unable to get up afterwards, and she lay down beside me the whole time, until Mum came home approximately 20 minutes later, soon as she came through the door Honey rushed to her to alert her that I needed help.  She is a super dog!!

And I am finally thankful for my best friend, and surrogate sister Aisha.  Aisha has been my rock, and her friendship and support has meant to much to me.  Every day she sends me a message on an instant messaging service or via Twitter to see how I’m doing and if I am having a rough time, or need someone to talk to, she is always there.  And even during tough times, she always makes me smile with her words, and take comfort in her encouraging speeches. Once, there was a time, where friends were walking out of my life and cutting all contact with me, so I am blessed and grateful that I have found such a wonderful, caring and supportive friend.

Looking back at this prompt, I have learned that it isn’t the little material items that we should be grateful for but instead be thankful for the people (and pets!) that are in our lives and make life with illness easier and more tolerable.

What things are you grateful/thankful for?  As ever would love to hear your thoughts so please comment below…

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…

 

Top 3 Tuesdays: Fellow Spoonies, tell me…

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Welcome to the twenty-sixth 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:

Top 3 Tuesdays: List three questions you have for other patients.

As I have yet to meet another patient with the same condition as myself, I have decided to ask questions that could be answered by any patient with any chronic illness.  This prompt could provide excellent dialogue between myself and readers of the blog, so please comment if you have any answers to the questions that I will ask during the course of this blog post.

How do you make being bed-ridden more fun?

How do you make being bed-ridden more fun?

How do you make spending time in bed fun?

As I am writing this post; I am doing it from my bed.  Today, my legs have decided not to work and so I am forced to being stuck in bed; unable to walk or even stand.   I hate being stuck in bed; I find it dull and tiresome as there is only so much one can do from bed.  I am fortunate to have my own television set in my bedroom, which thanks to my parents has access to satellite television, as well as my iPad in which I can watch films from my own collection or through those shown on Sky or through Netflix.  However there is only so much reading and watching television a girl can do before becoming bored.  Therefore, one question that I wish to ask other patients is: How do you make spending time in your sick-bed fun and tolerable?

How you stay calm before attending hospital appointments?

How you stay calm before attending hospital appointments?

How do you cope with hospital appointments and make attending more bearable?

I know that no patient likes attending hospital appointments, but no matter how much I try, I am always so nervous before leaving the house to travel to the hospital.  When that letter first lands on my doorstop; the nerves begin it kick in, and the appointment is the only thing that is on my mind until the appointment day arrives.  The night before, I feel sick and anxious, with thoughts running through my mind about what will happen at the appointment; what the doctor might say and generally imaging all the worst case scenarios.  As a result my next question for other patients would be: How do you cope with endless hospital appointments? How do you relax before an appointment?  Are there any routines you have to make the day fun and tolerable?

How to keep calm and carry on with chronic illness...

How to keep calm and carry on with chronic illness…

How do you cope with living with a long-term health condition?

My my final question for patients with chronic illness, like myself would be related to how the cope when the illness becomes too much to handle.  Lately, the dizziness that I constantly live with anyway, has become even more severe.  In addition the pain, fatigue and weakness in my legs has also worsened.  As a result of struggling with this, the depression that often accompanies chronic illness has reappeared and I have been struggling to cope in dealing with everything.  So, my final question, would be: How do you continue to cope when your illness becomes too much to handle? How do you distract yourself from the pain, depression and other symptoms you experience?

There are my three questions for other chronically ill patients.  Do you have any other examples of questions to ask to other patients?  As ever would love to hear your thoughts, comments and suggestions! And don’t forget to comment below if you have any answers to the above questions.  Thank you xxx

Preparing for the Holiday Seasons…

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Welcome to 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:

It’s the Holiday Season! Give us some tips you use to balance the holidays and your health.  How do you stay within your own boundaries and make sure you follow your health regime/plan?

Lets's start preparing for the holidays...

Lets’s start preparing for the holidays…

Christmas is perhaps my favourite time of year.  Although it’s extremely cold and miserable weather outside, in my opinion the season still provides a lot of joy and fun for everyone.  However, although it’s an extremely wonderful time of year, it does provide a number of challenges for anyone living with a chronic illness or disability.  So, the question stands: how can we deal with the upcoming holidays and still have fun and merriment and still look after our health and well-being?

The first must-do, especially at Christmas is to pace ourselves.   Although, the Christmas season is a very hectic time of year, and there is plenty to do, it is important for anyone living with a long-term health condition to be realistic about how much you are able to do and cope with.  Perhaps, use a diary and pre-plan your days of what you can do to plan for the holidays and mark down when you plan to carry out specific tasks relating to the holiday season such as when to do the Christmas shopping, going to visit family and friends to drop in presents and cards, as well as finding time to put the decorations up, and so on.  By planning and making time each day to prepare for the holiday season, we can ensure that we can also make time to rest and recover any energy that has been depleted whilst planning for Christmas.  This is especially important, as if we do too much and take on more responsibility than our bodies can handle , then we run the risk of becoming ill and suffering a relapse in our condition, and will therefore have an impact on our enjoyment of the holidays.

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

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

Planning is also key in having a fun and carefree Christmas and New Year.  Make lists of everything that you need or plan to buy for everyone you are buying a present for.  This will certainly help alleviate any extra stress that Christmas can place upon a person.  This is especially important for anyone with a chronic illness as stress can exacerbate illness, which can then lead to a relapse.  Also, it is important not be afraid to ask for help when needed, or when everything is becoming too much as it inevitable can during this time of year.  Again, doing too much can be dangerous for anyone living with a long-term health condition as we then run the risk of becoming ill during the Christmas season, and as a result it would not be an enjoyable time for you, as it should be.

Of course, as a result of the Christmas celebrations it means that we often deviate from our usual routines – we stay up later, get up later, and we may eat, drink and do a lot of different things that we are not used to.  However, it is therefore imperative that although our routines may be disjointed from usual, we still must remember to take our usual medications.  If memory is an issue for you, then remind yourself by setting an alarm on your watch or mobile phone to prompt you to take them.  Also, the Christmas seasons may mean invites to a lot of parties and other social gatherings, so think about perhaps either arriving later or leave early to avoid tiring yourself out, or alternatively ask the host if there is anywhere that you can sit or lie down to rest and recover during the party.

Also, although it may be tempting to join in with everyone else, in enjoying a lot of alcohol, it may be that you need to watch your intake of alcohol, especially if on several medications as it could have an adverse reaction with them.  Check with a pharmacist if it is safe to drink alcohol.  In addition, as I always do before the holidays, make sure that you have enough of your medication to last throughout the holiday seasons,  and ensure that any prescriptions will be processed in time, allow plenty of time as there may be a rush on Christmas Eve; also stock-up on over the counter medications as they may too be needed over the holiday season.

There are my top tips for surviving the Christmas holidays with a chronic illness!  Do you have any other tips for the readers?  How do you live with a chronic illness but also ensuring you enjoy the Christmas festivities?  As ever would love to hear your thoughts, suggestions and other comments you may have!  Comment below…

Taking the high road…

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Welcome to 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:

Taking the High Road: Write about a time you had to be the bigger person and take the high road.

A while ago, I was having a conversation with somebody online, and they enquired about my life with my health condition.  As I explained the symptoms that I experience, the person responded “Surely, dizziness isn’t that bad to live with.  I’ve experienced it a few times, and it wasn’t that bad…”  At first, I was astounded, and really wasn’t sure how to respond.  Then, I got really angry, and wanted to shout (or in this case type!) “It’s not that bad!  You try living with this constantly and then try telling me it isn’t that bad!”

As much as I wanted to, however, I didn’t and took the high road, and instead responded “Well, I am glad your experience with dizziness wasn’t bad”.  That was the end of the conversation, and instead opted for safer conversations such as books that we both like, and films and so on.  Looking back on the conversation, and after having conversations with other people suffering with chronic illnesses, I realised, that although the person’s comments were not said to be malicious or hurtful, although I found them to be just that; it is very difficult however extremely difficult to imagine  the severity of any symptom that a person suffers with, unless you have experienced it yourself.

Never a judge a person or indeed their illness if you haven't experienced it yourself...

Never a judge a person or indeed their illness if you haven’t experienced it yourself…

Perhaps, when people, whose words we perceive to be hurtful, in relation to our illness, we need to take a step back and instead of shouting and hitting back at their words, we can take instead it take as an opportunity for educating others’ about our particular health conditions, and becoming an advocate for everyone who lives with the condition.  It provides an excellent opportunity to really discuss with others’ what it is like to live with the illness, and to dispel popular myths that exist in the media and wider community.