Recent 5 Challenges and Small Victories

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

5 Challenges & 5 Small Victories…Make a list of the 5 most difficult parts of your health focus.  Make another top 5 list for the little, good things (small victories) that keep you going

Again this is a post that has been part of the Health Activist Month Challenge before; I had thought of skipping this prompt, however, I then realised that life with chronic illness can change overtime and therefore, I have decided to do the and write about the challenges and victories of life with my neurological condition.  I will think of the recent challenges and victories that have been in my life, and without looking at the previous post that I had written and can then compare how my condition has changed over time.

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Challenges 

  1. The first challenge that has been rather large in my life recently is definitely fatigue.  The fatigue recently has been constant and unrelenting.  Often I have no energy, and when I do find the little energy to do things, then I am so shattered afterwards that I find I may need a nap but often that does not help the tiredness that I feel.  After being out with my carer, I often find myself collapsing on my bed, and before I realise I have fallen asleep.  It has also left me with a lack of energy to be able to do the simplest chores around the house, for example, my ironing has been piling up recently as I have had no energy to be able to tackle the pile of clothes there waiting for me.
  2. My legs have also been challenging for me as late.  If I am not battling against the pain, weakness and trembling in my legs then I am dealing with loss of sensation in them.  The last few days the pain and trembling has been particularly bad and therefore makes walking both painful and challenging, but more than that it has also led to several falls resulting in cuts and bruises on my body.  I am unable to stand for very long because of the spastic paraparesis, which in itself is a challenge as it prevents me from being able to chores such as ironing or cooking without the aid of aids.
  3. The dizziness is another symptom which I have also found to have worsened recently, which has made it extremely difficult to go out, especially when needing the wheelchair.  Because the dizziness has been so severe recently, I have had to rely on hats whilst out on trips with my carer.  Wearing a hat allows certain visual disturbances which worsen the constant dizziness I live with, or induces the vertigo to be eliminated from my eye line, therefore decreasing the severity of the dizziness and vertigo. The dizziness has been very severe lately, and because of it I have even had to cut short trips out.  More time has been spent lying down in a quiet room as the vertigo has been so intense; and suppose it has been such a challenge to live with, that I am not living life as I should.
  4. I have needed the wheelchair a lot more recently which is also a challenge; because of the severity of the dizziness just being in the wheelchair feels very uncomfortable due to all of the movement and visual stimuli that I am subjected to.  It seems that recently I have lost all confidence in using the wheelchair, but on the other hand I really need to use it because of how weak my legs are – am often in a catch-22 situation!  It is also a challenge as I am due to go on a cruise in 3 weeks, and will need the wheelchair a lot more, especially when off the ship, visiting the cities which we are stopping at such as Rome and Florence.  It will be a big challenge trying to cope with the severe dizziness and being in the wheelchair at the same time.
  5. Feeling reliant on other people most of the time.  It can be very demoralising when you are unable to do things that once came so naturally, and needing other people to help you.  I wish I could be a lot more independent, and feel so helpless when I cannot even go out somewhere on my own.  It’s very frustrating!

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Victories

  1. I have mentioned this in a recent post entitled -’I went and I conquered‘ but a recent victory of mine was definitely going into Next, a local retail store and being able to shop in there!  This was a big step for me – because of the dizziness, stores such as Next can aggravate the dizziness and vertigo and makes them a lot worse because of the layout of the store, the height of the ceiling as well as the fluorescent lighting used.  My carer and I have been trying for a long time for me to even set foot in there.  It such a joy, knowing that I can shop in-store, save myself the cost of postage and packing, and even trying clothes on; something I haven’t been able to do for such a long time.  I have since shopped in there several more times since the original blog post and bought several items that I need for the holiday we are soon to embark on.
  2. This actually links in with a challenge listed above regarding the use of a wheelchair.  Yesterday the weakness in my legs was significantly bad, and so as my carer and I were headed to a local garden centre, it was decided that I very much needed to use the wheelchair.  The dizziness was severe, and so I was nervous about using it.  But, I actually was victorious against the dizziness, and managed to stay in the wheelchair and even managed to wheel myself around.  I felt in control whilst using the wheelchair for the first time in a while.  This is a victory as it has really boosted in my confidence at the thought of needing to use the wheelchair on holiday.
  3. I think another recent victory was keeping up with the Health Activist Writer’s Month Challenge especially considering how severe the fatigue has been recently.  It has been difficult to do anything as I have felt so tired but being able to keep up with this writer’s challenge has been a real victory for me as it has been very difficult doing it, but shows that I am able to push through and come out the other side.
  4. One thing that really keeps me going are the networks that I have created thanks to social media.  The friends I have made really keep me going through the dark and difficult times and is always a ray of sunshine, receiving a message of support on a day in which you are really struggling.  I am really proud to be involved with a new online community for those with neurological conditions, and it is the work behind the scenes which at the moment is really giving me a purpose which is a great and important victory especially as living with such conditions can make you feel so dependant on others.
  5. My positivity board is a real victory and one thing that does keep me going despite living with a chronic illness.  A lot of people have contacted me regarding my board, and have even created one for themselves!  I love that I have inspired others and help make someone stay positive through their own illness or troubles.

So, those are my recent challenges and small victories!  To read about what I had written previously then please go to ‘HAWMC Day 27: 5 Challenges and 5 Small Victories…

What about your own challenges and victories – have they changed over time as your condition has changed?  Would love to hear your thoughts and suggestions.  Please feel free to post your comments below…

 

 

 

Keep Calm and Carry on Wheelin’

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The first prompt reads as given:

Keep Calm and Carry On…Write and create your own “Keep Calm and Carry On” poster.  Try to make it about your own condition!  You can then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.

 

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I have chosen this particular phrase for my own ‘Keep Calm’ poster as it reflects my life with my condition at this time in my life.  As regular readers of my blog will know that my condition, and a symptom known as spastic paraparesis causes severe stiffness and weakness in my legs; as a result, my legs will often give way and often without any notice.  In addition, the stiffness often causes a lot of pain (when I have feeling in them, that is!) and therefore unable to walk very far.  As these symptoms have been increasing in severity, I am therefore required to use a wheelchair when I am out for long periods of time, or somewhere which requires a lot of walking.

The dizziness, that I experience however, makes it feel very uncomfortable to use the wheelchair due to the motion upsetting my vision and causing severe dizziness and vertigo.  But, as my legs are often too weak and the pain and trembling make it considerably difficult to walk, then I need to disregard the dizziness, and use the wheelchair anyway.

In nearly four weeks, I am going on a cruise, and of course, part of the holiday is going on excursions to some of the cities that we are visiting.  In doing so, it requires a lot of walking and due to the severity of the symptoms, I am going to have to use the wheelchair no matter how bad the dizziness is – and therefore I will have to just ‘Keep Calm and Carry on Wheelin’!

Being visibly invisible: The debate of stigma and invisible vs visible illnesses

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Welcome to the seventeenth 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 post reads:

Invisible Illness versus Visible Illness: What are some stigmas you have experienced with your invisible OR visible illnesses that have made you feel invisible?  How have you tackled them?

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Etymologically the word ‘stigma’ derives from the Greek word stigma, meaning a mark of disgrace either made from branding or pointing.  The mark was used to mark individuals who were seen as different, and by branding such individuals with visible marks it made it possible for society to avoid them.  In modern times, although many groups of society are not marked in this way, they still are shunned by society.  And those individuals living with illnesses; either visible or invisible are just one example of a group that are still being rejected by the wider society.

As I am someone who has lived through illness at times when it has been both invisible and visible, I can categorically state that stigma occurs in both of these categories.  Obviously, when the illness is invisible, however, it is harder for people to stigmatise individuals with such conditions as you cannot tell that there is a problem with them, unless it has been divulged to them.  These social networks however may be an example of a group that stigmatises an individual because of an invisible illness.  For example, I know many people who constantly live with fatigue, and often as a result have to cancel appointments or plans with others because of it.  Friends and acquaintances however do not tolerate or accept this behaviour as they cannot imagine or accept that tiredness can have such an adverse impact upon a person, and as result can perceive the individual as being lazy or uninterested in their friends.

We need supportive friends when living with an invisible illness and to be believed and supported

We need supportive friends when living with an invisible illness and to be believed and supported

Also, with many invisible illnesses, those suffering with such conditions do not always look sick, and consequently many do not acknowledge the fact that they are in fact sick, and the term “But you look so good!” is therefore banded about.  It is this lack of looking unwell, that results in many not believing a person when they do divulge that they are sick and has become one of the most common stigmas of invisible illnesses.  Another common stigma associated with invisible chronic conditions is the train of thought that such individuals do not deserve such privileges such as a disabled blue badge; a stigma that I myself have faced on several occasions and have written about in a previous post entitled ‘Becoming Visible in an Invisible World‘.

Being in a wheelchair can make you feel as if you are invisible!

Being in a wheelchair can make you feel as if you are invisible!

However, as I am at the stage where I need a wheelchair going out, my condition therefore is now much more visible, so what are the stigmas that I have faced whilst living with a visible chronic health condition?  The first that I have really noticed is the feeling that the condition and disability is taking over my  personal identity; the often feeling that people see me as the ‘girl in the wheelchair’ rather than the person I am.   An example, of this is the fact that when I have been out recently, people often talk to my carer or the person I am with instead of talking directly to myself.  This can be demoralising, and feels as if people perceive all individuals with disabilities as being unable to hold a conversation.  My problem is with my legs and not my intellect, I often feel like screaming.  It’s as if that because people need to look down on us, in the literal sense, then it must mean we all need to be pitied or looked down upon, metaphorically speaking.

When people do not talk to me directly, which I have encountered on numerous occasions, this definitely makes me feel very much invisible.  The way I have tackled this problem, is by holding my head up high and starting conversations with people on checkouts; and in shops as a way of subtly letting them know that although I am in a wheelchair I do not need someone to talk for me; I find it does work and the same cashiers have not done it again!

 

Do you live with an invisible or visible health condition?  What are some examples of stigma that you have personally faced?  As ever would love to hear your thoughts and experiences as well as any other comments you may have!  Feel free to comment 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!…

Please, don’t judge me…

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Welcome to the sixth day of the National Health Blog 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 upon given prompts provided by WEGO Health.

Today’s prompt reads:

Say WHAT?! What’s the most ridiculous thing you’ve heard about your health condition?  Was there any context? What did you think at the time you heard it – and what do you think of it now?

 

This is a tough prompt relating to my health condition as because it is rare and few people really know about it, then as a result I don’t really hear ridiculous things regarding my illness.  So, I had to go back to the thinking board for this one.  Then I remember a comment I heard whilst out with my carer.  The incident happened a couple of weeks after I started using the wheelchair.  This one week we arrived in our local town and decided to go for a drink and so after my carer got the wheelchair out of the boot of the car and set it up, I then got out of the car to get in the chair.  To do this, I took a tentative and wobbly steps to the wheelchair, and when we were ready I wheeled myself to the local coffee shop.  After ordering, and whilst waiting for the order to be ready, I went to look for a table for us to sit at, and as my carer was still at the counter waiting for our drinks, I began to check my emails, when i heard a conversation between a middle-aged couple at the next table.  “Tsk, I saw her outside walking to the wheelchair; she obviously doesn’t need it!  She must be lazy!”

I was so shocked and upset that I didn’t say anything to the couple and instead focused on my phone, and then as my carer arrived with our drinks, put a smile on my face and started a conversation.  Afterwards, I was very angry – how dare they judge me!  How dare they judge a situation that they don’t know and obviously do not understand.  It saddens me that judgements regarding disability still hasn’t changed despite the so-called legacy of the Paralympics from last year.  I’m not saying however that these judgements are representative of the majority of people, but there are still a minority who assume that just because I am physically able to walk, means that I am not in need of a wheelchair.  I am sure they would think very differently, if they had seen me stumble around and legs giving way because of the weakness.  Yes, I can physically walk but doing so not only causes great discomfort and pain but am also on edge and waiting for them to give way, so using such an aid not only saves me from endless falls but also allows me to enjoy trips out without the worry of when they are next going to give way.

Have you heard something ridiculous about your health condition>  If so, what was it?  How did you feel or react?  Feel free to comment below…

Acceptance: It’s not about giving up but living life despite chronic illness

In 1969, the Swiss American psychiatrist Elizabeth Kübler-Ross published her groundbreaking book called ‘On Death and Dying’ in which she introduced the now famous ‘Five Stages of Grief’.  Her theory suggested that there are five stages of adjustment after a loss, which are:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

The theory as suggested by the book was to describe the five stages of grief in terms of a bereavement of a loved one.  However, these five stages of adjustment have been applied to many areas that involve a loss, or a change in a person’s situation such as an end of a relationship and as most spoonies would be able to relate, these five stages of grief can also be applied to life after a diagnosis of a long-term chronic condition or the onset of a progressive disability – mourning the loss of good health, the loss of a future that we may not have as a result of the diagnosis  as well as mourning for activities and other situations that was once was enjoyed but which may be prevented by the symptoms of the chronic illness or disability.

 

 

The 5 Stages of Grief

The 5 Stages of Grief

 

 

An example of these stages in action can be as follows:

Denial 

We immediately are in denial of the new situation and cannot accept that it is true.  In terms of chronic illness we may question the doctor and ask whether he is absolutely certain that the diagnosis is correct or even ask to be retested as we cannot accept the diagnosis as fact.  We may also not be open to the new medications or treatments being suggested as that would mean the condition is real.

Anger

Like many others, anger is a regular feeling when living with chronic illness.  We are angry at the illness itself due to the severe symptoms that it causes; angry at the limitations it places upon our lives; doctors who made the diagnosis as well as those who didn’t believe you.  Honestly, we are often angry at people around us who are busy getting on with their lives and who are able to do all the things that we are no longer able to do.  In my opinion, anger is one of the five stages that those living with chronic illness reverts to, especially during times when symptoms are particularly bad and in times of a flare.

Bargaining 

Although anger stays for a while, we eventually progress onto the third stage which is bargaining.  Often, when living with chronic illness we become lost in a world of “What if” and “If Only” statements.  We want to return to the life we had before illness and so we attempt to make deals with our bodies.  We promise that we will take all our medications correctly, and keep to a healthy diet as well as exercising regularly in exchange for the condition to disappear.  We promise to do anything in exchange for a cure; anything to return to a normal life.

Depression 

As times passes, however we slowly realise that bargaining isn’t working.  As there is no sign of a cure or a return to a normal life we begin to lose hope and instead slide into a depression.  This isn’t a sign of a mental illness however but a response to the loss of our previous life.  We turn inward and withdraw from life, and get stuck in the fog of sadness, despair and hopelessness.

Acceptance 

The move into acceptance is a slow and gradual process.  To reiterate it is not a state of being perfectly fine with being chronically ill but is perhaps a state in which we have more good days than bad ones.

However, this is not a single process, however but one in which we often regress back to certain stages and the need to work through them all over again, especially at times when the condition gets worse – and so we are back at the denial phase and need to work through all the stages just like we did after the initial diagnosis.   As the condition gets worse or we go through yet another flare we are essentially mourning the loss of a piece of ourselves whether it be the loss of mobility, freedom, loss of relationships or the loss of a career.

 

This need to move into acceptance is brilliantly summed up by a famous quote by Joseph Campbell:

 

 

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This post is about acceptance – to acknowledge the changes in our situation; the ongoing changes in our health.  It is not about being completely fine or deliriously happy about the illness or disability but rather about finally recognising and acknowledging the permanence and reality of life after diagnosis.   To learn to live with the illness as best we possibly can and readjust to the new reality and as the quote above suggests to let go of the past and the plans we once had and to embrace the life we have now and move on the best way we can.   Acceptance is not about giving up.

I thought about the ‘Five Stages of Grief’ recently after a day out with my Personal Assistant.  As my regular readers may be aware, I have had to start using my wheelchair on a much more regular basis, especially when out for hours due to the worsening weakness in my legs.  Last week, my personal assistant commented how much more confident I seemed since I started using the wheelchair and how I seemed to enjoy days out much more.  A reason for this is because I am in the wheelchair, I am not constantly on edge that my legs will give way, or on the days when I am bad I am not waiting for my legs to collapse.

However, as my regular readers will know, I live with constant dizziness and regular bouts of vertigo and as a result of the constant movement whilst in the wheelchair, it was very difficult for me to use it.  So why do I seem so much more confident using the wheelchair than sitting down, and enjoying being out much more when it causes such symptoms?  One possibility is that as suggested by the theory discussed, I have finally accepted that I need the wheelchair.  Perhaps, I have finally moved through the these five stages and now accepted my new reality.  Before, I was also not only worried about the wheelchair’s effect on my vestibular systems but also worried about the judgements of other people, however, that no longer is a concern of mine and happy to be in the wheelchair.  Perhaps, it is much easier to live with a new situation when we have accepted that new situation.  We need to embrace the new reality to live life to the fullest despite any limitations that chronic illness has placed upon out lives.

Becoming Visible in an Invisible World…

 

Last week (9-15th September 2013) was National Invisible Chronic Illness Awareness Week.  The idea behind this particular Awareness Week is to raise awareness of invisible chronic illnesses (which there are many!) as well as providing support to those suffering from such conditions, who may feel misunderstood by others, who often disbelieve their illness because they ‘look so good’.

What does a person with an invisible chronic illness look like?  The truth is, they look just like you or me.  Look at the person sitting next to you.  That person although may look healthy and normal , but their body may be hiding a secret.  That person could be battling a hidden illness such as fibromyalgia, ME, lupus, or MS.  They may look perfectly fine, but they may be in excruciating pain, dizzy or suffering from fatigue or other such symptoms often associated with invisible chronic conditions.

The symptoms associated with my condition such as the constant dizziness, bouts of vertigo, the trembling, stiffness and weakness in my legs are all invisible to the outside world.  No one other than me feels the trembling sensations or can feel the world spinning.  To look at me, I look normal, healthy.  Going out the only clue would be the crutch I use; but often people assume it’s used because of a temporary injury.  Often when I bump into someone I knew either from school or University days, or just a person whom I haven’t seen for a while asks “Oh, what have you done to your leg?” assuming the crutch is temporary and not because I am suffering from a permanent disability.

Nowadays, however the somewhat invisibility of my condition has become much more visible.  Because of the severity of the trembling in my legs, and the fatigue that has become so much worse, I now have to use my wheelchair much more regularly.  On the days where I am out with my carer, I am in my wheelchair more than I am out of it, to avoid falls and because the stiffness and trembling in my legs makes it so difficult to walk far.  It’s still true that the dizziness is bad that being in the wheelchair is difficult for me, but as the falls are much more regular and the trembling is so severe that now I have learnt I have little choice but to use the wheelchair.

 

Me out and about in my wheelchair

Me out and about in my wheelchair

 

 

Last week, whilst out with my carer, we went to our regular coffee shop for our favourite hot drink, is when I overheard a conversation between a middle-aged couple about me.  “I saw her walk a few steps before getting in the wheelchair, so she can’t really need it; she must be faking”.  This unfortunately isn’t a rare statement against those with invisible chronic illnesses who occasionally need to use a wheelchair or other assistive devices.  Those who are healthy can’t seem to fathom that a person can fluctuate between needing to use a wheelchair, or other assistive devices such as a crutch and feeling well enough to being without such assistive aids.

It raises interesting questions whether such awareness weeks and events are working and are successful in raising awareness of invisible chronic illnesses when there are still such prejudice and discrimination against those battling with such conditions.   How can we raise awareness within the wider community and population about chronic invisible illnesses and disabilities and the impact they can have on those living with them.  How can we teach others that wheelchairs are needed for not just those who are paralysed or missing limbs; that wheelchairs are not always a permanent fixture in someone’s life but can be used for certain situations or when a person experiences a flare in symptoms; a common feature with invisible chronic conditions.

During the National Invisible Chronic Awareness Week, people blogged, tweeted and shared information and took part in discussions on Facebook to raise awareness and connect with others facing similar situations but it seems that we have more work to do in educating the public, to help the end the prejudice and discrimination when those with invisible illnesses when using assistive devices as well as using disability badges…

 

NHBPM Day Five: Giving Thanks!

Today’s prompt is all about giving thanks for what we are grateful for; or what we are excited about or inspired by.  Thought I would cover all three!!

I am grateful for…

  • Firstly, I would say that I am grateful for the good days that I do have.  The good days seem to be rare these days, but I am grateful for when they do come around.  Having some many bad days, and feeling unwell, fatigued and weak; as if though if everything is an effort; so when good days present themselves, boy are you grateful!!  Having a little more energy to do chores, legs being stronger, and not as dizzy is a real blessing; and means that I can accomplish more and manage to have a little bit of fun!!
  • My new wheelchair: I am giving thanks to this new mobility aid, as it will enable me to be able to get out of the house a lot more, and more importantly it will enable me to stay out for longer.  Before I acquired the wheelchair, I was only able to go out for short periods of time due to the severe weakness in my legs, and especially as they give way if I am on my feet for very long.  Therefore, much of my time was spent in the house, much of the time alone.  Now I have the wheelchair however, I can go out for full day trips taking in shopping, or local tourist attractions.  Looking forward to it!
  • My family and my dog!: They have to be the biggest thing that I am grateful for – whenever I am unwell or feeling down, they are always there to pick me up and comfort me.  If I need something or need to go somewhere then they my parents will pick what I need up when they are out, or take me to appointments or wherever I need or want to go. They are all simply the best!

I am inspired by:

  • Other bloggers: I love to read other bloggers and health activists blogs.  Every one that I read are truly inspiring and shows a lot of strength and courage to spread awareness of their particular condition, as well as talking and discussing the painful or unpleasant symptoms that each of us face.  It would be so easy to just simply hide away and curl up in the duvet when chronically sick, but all health bloggers and health activists want to make people more aware and to understand their particular health condition (or the condition their loved one is faced with) and to provide support to those who are also living with the same condition – truly an altruistic act!
  • Reading – I absolutely adore reading – especially as my mobility problems have become worse and cannot move around as easily, so is truly blissful to be able to snuggle up with a great book.  Love those books that are able to transform you to different worlds, or experience other cultures – sometimes it’s as if you are taking a holiday without leaving your home!
  • Nature: I love how beautiful nature can be – the bright bold colours of flowers such as sunflowers or peony daisies, the different patterns and colours on butterflies.  Research has also found that flowers can actually reduce depression! Now if that isn’t a great reason to buy some flowers for a sick friend, I don’t know what is!

I am excited by:

  • I absolutely adore the writer Jodi Picoult and actually own every one of her 19 books, so one thing that I am definitely excited about is the release of her latest novel, usually released in March or April every year.  I always pre-order the latest release, and look forward for when the book gets delivered to me so I can start to devour it!
  • I get excited sitting down and relaxing in front of my favourite television programmes – it feels like an event, and particularly love the American TV dramas such as CSI, Grey’s Anatomy and Bones.
  • Volunteering – I enjoy and get excited by going down to volunteer at a local mental health resource centre every week, and feels really worthwhile giving a few hours of my time to help others

A few of my favourite things!…

What are the 3 things that you are thankful for, or inspired by or those things that get you excited?

An Update…

Hello readers!

I know, I know I have been slacking lately in my writing recently but have been relatively busy and having stuff to deal with!

Firstly, I went away for a few days whilst my parents enjoyed a mini-break in Prague (lucky things!),  A friend of mine, kindly offered to let me stay with her, and I had a great time – it was lovely to have a break from the house, also known as ‘my prison’ and basically have a change of scenery.  The day my parents went away, was all a bit of a rush as in the morning I had an appointment at my local GP’s office for a wheelchair.  Now I am all measured up for my own wheelchair which I am hoping will give me more independence and will enable me to go out for longer periods of time.

And after, I came back from my break the hunt began for a personal assistant for myself.  An employee whom I can hire via a grant given by the local council.  With this I can employ a person to support me and take me on trips into the community and so on.

And yesterday I had two interviews with the applicants whom applied for the position – both were excellent and were extremely nice, as well as experience caring for others.  And now I have chosen one with whom I felt more rapport.  And soon I will be going out more, and really looking forward to start swimming regularly at my local swimming pool, hoping that it will help with the spasticity in my legs and ease the severe discomfort.

Oh, and I nearly forgot to mention that I have been nominated for a 2012 WEGO Health Activist Award!!  I have been nominated in the ‘Miss/Mr Congeniality Award’ which is awarded ‘to someone who always has a kind word, a positive note, and a virtual hug’!!

So, whoever it was who nominated me thank you so much!!

P.S.: And for all my readers I have recently set up a Facebook Page!!  If you click on the ‘like’ button on the Facebook widget, which can be found on the right hand side of the page and you can get updates on everything happening with the blog or myself concerning my illness straight to your Facebook timeline!!  So click ‘like’ today so you don’t miss out on the latest news!!

 

Unsure of the Path I’m On…

Hey Friends

Me again, for another post to my blog.  Hope all of you are OK.  I have to admit, lately I am struggling – feeling down, alone, sometimes I feel as if I have no friends or no-one that I can turn to – although absolutely no idea as to why I have been feeling like this…

May be down to the deterioration of my condition – the dizziness, which has been constant for some time now, seems to have become more intense, as well as the episodes of vertigo becoming much more frequent, and are often times are worse to deal with than the constant dizziness, especially when you take into account the visual disturbances – vision becoming foggy or blurry and unable to focus on anything, sometimes not even being able to recognise what I am looking at.

As well as that, my legs seem to be gradually becoming worse too – experiencing many ‘drop attacks’ in which my legs suddenly give way from under me, with no warning.  That is the one of the hardest things to deal with also – the unpredictability of it all – going out perhaps, not knowing whether my legs will collapse, and when you take into account that often I find myself often unable to get up after these ‘attacks’ making plans to go anywhere becomes very difficult.

Take one example: on a Monday, I volunteer for a local Mental Health charity, which I have done for a couple of years now.  So, on my way, my Dad takes me to a local supermarket to go and buy some lunch, and last Monday was no exception.  However, whilst  buying my lunch, my legs gave way, and like on several occasions found difficulty in being able to get back on my feet again as my legs were so weak, and felt as if they were trembling a lot, so consequently  my Dad had to take me back to the car and buy lunch for me.  Legs never really recovered after that, so felt as if I wasn’t much use at the Centre, but often is nice just to get out of the house for a few hours.

Later on, had another appointment with the doctor.  Basically, told him of all the difficulties I have been having, the seemingly progression and deterioration of the condition, etc.  And once again was told “unfortunately, with conditions like these it isn’t much that we can do, and  no drugs are going to help with the weakness…”, basically another way of saying “There isn’t anything we can do, you just have to live with it.”  Mum even asked whether there was any possibility that I may need to use a wheelchair in the future, and the doctor just nodded his head in agreement, that may be my future…  I was shocked and a little upset, as I honestly never really thought that I may need one, people have said that maybe I should, but never really thought that I may need to actually us one, more so for going out, as still need to use the muscles so they don’t atrophy.  But if I need one, then so be it, as there are worse things in life, hey?

I have been often told that I need to exercise and make use of the muscles as often and as much as I can, however, as I am unable to stand for very long, it makes finding any forms of exercise that I am able to do very difficult, my legs and problems with balance and co-ordination, etc. My exercise bike has been increasingly difficult to use as often feel that I am going to fall off, and the Wii Fit that we have does not often recognise me during some of the games as when you are required to stand still, my body is swaying back and forth…

However, I have recently bought a machine that hopefully may increase the strength in legs (although isn’t  guaranteed that it will work) and also keep me fit and in shape.  It is called an Aeropilates Machine  -  a machine that incorporates pilates exercises with a resistance machine….

AeroPilates 4695 4 Corded Machine and Cardio Board

AeroPilates 4695 4 Corded Machine and Cardio Board

“Pilates was invented by Joseph Pilates in the 1920s as a way of incorporating a full body workout to build muscle and core strength. Over time pilates has come to be the preferred means of exercise for a wide range of people from athletes and dancers to those with common household injuries like injured backs. It’s benefits are wide-reaching and provide not only fitness and toning, but also help with injuries that you might have. An aero pilates machine apply the basic principles and effectively ‘super charge’ your workout so that you reap the rewards of pilates with an aerobic workout that aids with blood flow and muscle growth.”

Anyway, I’ll be off now, doing some exercises on my new AeroPilates machine – fingers crossed that I will see some benefits soon…