I’ll be there for you…cos you’re there for me too…

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Throughout my teenage years, I was a massive fan of the television show ‘Friends’.  Not only was the show incredibly funny but I also loved the relationships between the six main characters – their strong bond of friendship and how they were constantly there for each other.  However, although the show was entirely fictitious, I also found myself feeling envious of the close friendship as unfortunately I had none of my own after my so-called friends abandoned when symptoms, especially the dizziness started interfering with my everyday life.  There is nothing like a diagnosis of a neurological condition, or any other chronic illness to show who your real friends are.

After leaving university and entering adulthood, the problems regarding friendships have not improved.  Many friends that I have made, unfortunately no longer in contact with me; despite my attempts to do so.  This is something that has hurt me deeply over the years, especially as I thought of them as close friends.  I am not sure the reasons behind the now lack of contact – the reason may lie in their own prejudices towards my conditions; or perhaps they failed to understand the reasons behind my inability to go out to certain places that I find uncomfortable and can precipitate an attack of vertigo.  Whatever the reason however, it hurts deeply and has often led to a decrease in self-esteem and self-confidence as a result.

In my last blog post I write how many of my symptoms have recently worsened and furthermore how I have struggled both physically and emotionally because of the sudden deterioration.  What has also made it harder is the loneliness and isolation that I have felt when in the house during this period.  It is during these times that I wished that I had friends living close-by that could pop-by for lunch or to take me out to distract me from my severe symptoms and make me feel that I am less alone in my struggles with living with this condition.

Although I may have a distinct lack of friends living in a close proximity, I have however made a lot of friends online that although the distance between us is large, they should not be excluded from this discussion into friendships and chronic illness.  These friendships that I have developed online through the blog and social media have come to mean so much, as they too also experience chronic illness or other long-term chronic conditions and therefore understand exactly what it is like to live with them and thus gives support like no other.  Furthermore, by using tags and hashtags on social media such as the term ‘spoonie’ (a person who is living with a chronic illness or chronic pain) is not only fantastic at connecting with others going through similar experiences but also makes us feel that we are part of a community, a fact that is important as due to our conditions we often feel excluded in other areas of our life.   And it is thanks to these online friendships that I now feel that I have people outside my family that actually care about me, and have also led to the feeling that I am worthy of such friendships (as I have been burned by many people in the past, I often felt that there was something wrong with me, or was not worthy of friendships).

It is surprising that these online relationships can develop into such strong and meaningful friendships, but for many of us living with long-term health conditions, or conditions which prevents us, or makes it difficult for us from getting out into the community we know that it is these friendships that are so important to us and makes life living with illness a little easier.  In my experiences, I have often found that the friends whom I have met online actually keep in contact with me, or even cares more about me then the people who are in my real-life existence.

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A favourite saying of mine is “Friends are like stars.  You don’t always see them, but you always know that they’re there…” and it is certainly true regarding my fellow chronically ill friends.  Just because I don’t see them, it does not make the friendship any the less important or real – what is important, however, is that they continually are there for me during my struggles and even through the good; and also that they show concern and support when I need it.  So, what if it comes through a computer screen instead of a face-to-face interaction, isn’t the fact that we have made a connection with another person the most important point?

But perhaps there are ways which I can develop these friendships further – perhaps swapping phone numbers with friends I have made online, or even start using Skype as a means in keeping in contact with people may be a start in gaining support when I am in need, and to also give support for when I am needed to support someone else in need?

 

So, I am interested – what are your experiences of friendships and life with chronic illness?  Have you still managed to maintain friendships with those in your real-life existence? Or do you rely on friendships that have developed through online communication?  Love to hear your thoughts and comments on this subject so please don’t hesitate by getting in touch by commenting below or even getting in contact via social media (links can be found by clicking the icons at the top of the page).

 

A Personal Experience of Cruising with a Neurological Condition

As mentioned in my previous post, I concluded that in my opinion cruises are a perfect option for  those with disabilities due to the excellent accessibility of cruise ships by large companies such as Royal Caribbean and the fantastic care that the staff provide for those passengers with disability.  It is also preferable to using air travel because of the lack of waiting around for hours in a large airport.  However, as the first post was a general overview of cruising with a disability, I wanted to write another post, writing about my own experiences of going on a cruise with a neurological condition.

As regular readers will know, one of the main symptoms that I experience as a result of the brain stem lesion is dizziness and problems with my balance.  As a result, I was hesitant about going on a cruise because of the severity of these issues that have been increasingly become worse recently.  In fact, a few days prior to leaving for the holiday, I was in floods of tears stating that I couldn’t face going on the cruise because of how bad I have been feeling.  Furthermore, the attacks of losing my vision also came back the days before the start of the holiday, and as a result I just felt that I wanted, or even needed to stay at home to be among the familiar surroundings and those items that give me comfort.  I was frightened of these episodes occurring when in unfamiliar surroundings and somewhere where I do not know the layout.  I was eventually talked round into going obviously, and had to go anyway as it was too late to cancel without losing a substantial amount of money.

I so wish that I could write telling you, I had an amazing time.  I wanted so much to be well enough to enjoy the whole cruising experience as well as visiting new places such as Rome and Florence.  However, unfortunately I found the majority of the holiday feeling very unwell.  The dizziness and vertigo were severe for the entire trip, and has not settled since returning so I am hoping it is not yet another deterioration in my condition.  A lot of people who I know that have been on cruises assured me that these ships are so large that you cannot feel them moving at all (apart from the times when the sea is rough!), however my experience was far different.  Even when the cruise ship was docked at the ports, I still felt the ship moving; for the entire holiday by world was awash with constant motion.  Perhaps due to the neurological condition and the problems with balance as a result, I am hypersensitive to any type of motion.  Furthermore, as a result of the increased problems with my balance whilst onboard, the number of falls that I experienced increased as a result and therefore had to rely on my wheelchair for most of the cruise.  However, having  said this for me a cruise was preferable as if my severe symptoms suddenly presented themselves then I would not be too far from the cabin where I would be able to lie down and recuperate until the symptoms dissipated and I felt well enough to rejoin the fun onboard again.

I didn't manage to get off the ship during the cruise but didn't miss out on the amazing sights that were on offer from the ship itself.  This is an amazingly beautiful picture of Nice

I didn’t manage to get off the ship during the cruise but didn’t miss out on the amazing sights that were on offer from the ship itself. This is an amazingly beautiful picture of Nice

The symptoms however did not dissipate or I recovered enough to fully enjoy the experience, and therefore unfortunately was unable to leave the ship and visit the various destinations that the ship docked.  The symptoms were just too severe for me to feel well and strong enough to get off which is such a disappointment for myself as I so wanted to visit these places, and those in Italy in particular.  Instead, I had to make the most out of what I could do, which was not much because of the severity of the symptoms and due to the weakness in my legs.  Instead, I stayed in the cabin and slept due to the fatigue or spent the time reading.  It might sound as if I didn’t accomplish much, however I did manage to read a rather impressive 6 books during the 15 night cruise, some of which I have wanted to read for a long time but hadn’t found the time.  A positive therefore is that the holiday gave me time to rediscover a love of reading and losing myself in stories that for a short time took my mind off the dizziness, trembling, weakness, fatigue and pain.  And talking of pain, I spent a lot of time using the Solarium and enjoying the facilities including the warm jacuzzi, sauna and steam room.  I found that spending time in the jacuzzi was excellent to relax and unwind from the stresses and worries of my condition as well as helping to ease the pain that I experience in my legs.  In addition to using the jacuzzi my mother also splashed out for us to have a massage at the spa onboard Adventure of the Seas, which again was incredibly enjoyable as well as being incredibly relaxing.  The masseuse noticed the stiffness in my legs, as well as my cold toes, which apparently is a sign of poor circulation so was even recommended on some oils which we could use at home to ease the pain and increase the circulation in my legs.  It was very pricey but really was worth every penny.  My highlight of the holiday!

My sanctuary onboard Adventure of the Seas

My sanctuary onboard Adventure of the Seas

Even going down for dinner was difficult for me – the lighting, the varying ceiling heights and the loud noises  all seemed to bother me,, making me feel very dizzy and setting the vertigo and although I felt silly for wearing it, I needed the security of my hat with me, the majority of the time in order to block out the stimuli which were making my symptoms worse.  I was unable to attend the shows because of the strobe lighting and flashing lights being used, as they too are a trigger for the episodes of vertigo that I regularly experience.  However, I did attend an ice show which used such effects, and was very unwell afterwards, with the inability to even get dressed the very next day.  People did stare and felt very self-conscious but I remembered a great quote by Dr Seuss “Those who mind don’t matter and those who matter don’t mind.”  A lot of people who we met during the cruise were lovely and very understanding such as Gemma and Stan, a granddaughter and granddad who sat on our table at dinner.  Both were lovely and we enjoyed their company during the cruise.  Although even attending dinner was difficult as positive is that, during most of the holiday I still managed to go despite the severe symptoms I was experiencing and very much enjoyed dressing up for the formal nights.  Arriving back at the cabin we were on some nights greeted with the fun and cute ‘towel animals’ created by our wonderful room attendant (who nicknamed me Rihanna during the holiday!).  They also helped put a much needed smile on my face!!

 

Being so unwell and suffering with severe symptoms so much on a holiday was incredibly difficult and as a result was very difficult to remain positive.  For obvious reasons, did not have room to take my positivity board along with me on the board which is a main tool of mine to remain positive despite chronic illness.  I did however take my gorgeous Book of Strength and Book of Motivation along with me, which helped me to cope during the difficult times.  Then whilst browsing the shops onboard, I saw a gorgeous necklace, depicting the word ‘hope’.  In replace of the ‘O’ was a ribbon using silver stones.  A silver ribbon, I remember reading is used for a variety of different including brain disorders (or neurological conditions) and as a result was drawn to it, and thought it would be a perfect piece of jewellery to remind myself to remain positive despite living with a neurological condition and remain hopeful on the days where dark clouds are appearing in the same way the positivity does for me when at home.  A couple of days before the cruise, they had a jewellery sale – this time selling charm bracelets by the jeweller Bella Perlini.  There were many bracelets to choose from in a variety of different colours; so many that I had trouble to decide which to buy.  Then I found a plain silver charm bracelet, which had the words ‘Live, Love, Laugh and Dream’ engraved and again the inspiring positivity of this piece of jewellery really spoke to me and so had to buy it.  With these pieces of jewellery it is like wearing a piece of my positivity board and carrying it with me wherever I go.

To conclude, the cruise was a difficult holiday for me, with the deterioration and severity of my symptoms.  A cruise, however does offer several benefits such as the easy and fast booking and check-in day on departure day, and the short distance to your cabin when chronic illness strike.  Although, the cruise was difficult and felt very unwell for most of it, I am glad that I went; if I hadn’t there would always be that ‘What if?’ question being asked in the back of my mind.  In addition, if my parents were to go on a cruise again, I would not feel as if I were being left out or jealous that they were going away and I wasn’t because I am aware of the effects that the constant motion of the ship has on my particular symptoms.  But as unwell as I was during the cruise, there were several highlights of the holiday and positives of my time away.  Would I do it again?  Probably not; perhaps the only way, would be if the doctors were able to cure the dizziness that I experience.  How, likely that is I don’t know.

 

Make plans…our bodies laugh

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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:

Summer Lovin’…Summer is coming up.  What plans do you have?  Any family vacation?  What do you look forward to in Summer 2014?

I have to admit that I currently have no plans for the Summer of 2014.  Why is this?  For starters, in my opinion making long-term plans whilst living with a neurological condition or chronic illness like myself, can be extremely difficult.  It can be extremely difficult because everyday is an unknown.  We do not know what each day will bring; how severe the symptoms associated with our condition and how we will feel from one day to the next.  Sometimes especially when experiencing a bad flare in our conditions, we do not know how we will feel one minute from the next even, and so therefore making plans can often be problematic as there is always the worry that we will need to cancel.  And cancelling plans not only disappoints those with whom we have made those plans with, but also leads to disappointment for ourselves.  You know that phrase “We plan, and God laughs” – never has a saying been so true for life with chronic illness, except that it is our bodies that laugh and not God.

"People plan and God laughs" or the Spoonie equivalent is "We plan and our bodies laugh!"

“People plan and God laughs” or the Spoonie equivalent is “We plan and our bodies laugh!”

By the time that Summer arrives of course, I would have already have been on my holiday.  The first holiday in fact that I have had for several years.  At this very moment, I am a mixture of being very excited but also very nervous.  Living with my neurological condition can be very difficult, and therefore I realise that going on holiday may at times be very difficult due to my symptoms such as dizziness.  However, as I am going on a cruise, it has a variety of benefits, such as being able to set the pace for the holiday itself.  I can be as active or passive as I want; and in addition if I suddenly become unwell, I can simply head straight back to our cabin without the hassle of travelling back to a hotel from the beach or from somewhere further afield.  Also, being on a cruise ship could also lead to more independence away from my parents as I can (with hope) wheel myself around to areas of the ship where the activities that I want to take part in are held.  For example, I have learnt that often cruise liners hold art and craft sessions, such as lessons in jewellery making or scrapbooking and so as I have found art and crafts to be useful in distracting myself from symptoms such as dizziness and chronic pain and so therefore may be beneficial for me to attend such onboard activities.

I also know that it may take a while to recover from the cruise and from all of the added activity that comes from being on holiday.  The start of the Summer therefore may be recovering from the holiday.  Unfortunately, the Summer may also see more hospital appointments as am waiting for an MRI to be conducted before seeing my consultant again.

Although I don’t have definite plans for this Summer, I do hope however for more lovely, relaxing and fun days out with my carer and enjoy the most of the warm weather.  Day outs to nearby tourist attractions, days out shopping or simply a trip to our favourite coffee shop, I don’t really mind as long as the Summer isn’t spent in my house with only my symptoms for company.

Dear Rhiann (at age 16)…

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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:

Dear 16-year-old-me….Write a letter to yourself at age 16.  What would you tell yourself?  What would you make your younger self aware of?

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This particular post is one which is both extremely personal and difficult to write.  Life for me was extremely difficult for me when I was 16 – I didn’t really have any friends, I was experiencing depression and anxiety as well as living with symptoms of the neurological condition even though it was undiagnosed at that time.   As you can imagine was not a very happy time for me at all.  Now, I look back at that time in my life,  I realise how much I have learnt about myself and life in general since then and furthermore how far I have come since that difficult and dark period in my life.  And, so there are so many lessons that I would share to my 16 year-old self, given the chance.  Here is a letter that I have written to my younger self.

Dear Rhiann,

You may not believe this but this letter is from you but a you from the future. Yes, that is right, as I am writing this I am actually 28 years of age and the year is 2014.  I am actually writing this letter just less than two weeks before going on a cruise around the Mediterranean – yes, that’s right – I (and the future you!) will finally get to experience the beauty and history of Italy; a place which I remember you have always wanted to visit.  So, that is one lesson that I would like to share with you – that although you may not realise it now, and despite how life is difficult for you right now, there are still many good things that are and will happen during our lifetime.  That even what may seem completely impossible right now, because of the way you are feeling and the severity of the dizziness that I know you are experiencing, the impossible is still within your grasp.  The trip may not be easy, and will at times be extremely difficult but I promise it will be so worth it.

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I know you are going through a very painful and difficult time in your life, having formally been diagnosed with depression, and having to start taking antidepressants a couple of days before your sweet sixteen.  Writing this, I remember how sick they made me feel for the first couple of weeks, only being able to eat very little before I felt full.  I also remember the incredible loneliness I felt back then, especially during school, having no friends and walking around in a daze, trying to pass the time until lessons started back after lunch.  But I want to reassure you and let you know that things will get better and there is so much more in life for you to enjoy and experience.

I also wanted to share a secret with you – the dizziness that you are experiencing?  It’s not in your head, and you are certainly not imagining it as some doctors have led you to believe.  Because of the rules of letting me write this letter to you, I am not allowed to tell you what is wrong, but there is an explanation for it.  So, please don’t listen when the doctor’s keep telling you that the dizziness is psychological and a result of an anxiety disorder.  Advocate and fight for yourself and your health instead of being timid and compliant like we are, as well as putting doctors on some sort of pedestal because they have had professional training and  “they know what they are talking about”.   One thing that I have learnt through years of navigating the medical field is that doctors are not always right; they are not infallible and they make mistakes.  Listen to that voice inside your head that knows that something is wrong and don’t give up on finding answers to the reason behind the dizziness.  Please keep fighting for answers.   And don’t give up and lose hope that the answers will never come, because they do – it might take some years in the future but they do come.  Trust me.

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I cannot say it isn’t going to be easy, or that it’s going to get better and you are going to live a full and normal life, but I believe that you are stronger than you think you are…and you can handle a lot more than you think you can…

And the loneliness you feel – it will go away, you are going to find people who will accept you for who you are, friends that are going to support you in times of need.  I remember at sixteen being teased and ridiculed for who you  are– just remember that no-one has a right to make you feel that you need to apologise for who you are.  Don’t be ashamed to be yourself… You will find people who love you for exactly who you are and make you feel important and valued.  It won’t happen overnight but those people are there waiting to find a wonderful friend like you are.

Before I forget  – the heaviness and stiffness that you feel in your legs?  The feelings that have been with you, since you can remember?  Well, those feelings, they aren’t normal and isn’t something that everyone experiences…Maybe mention this at your next doctor’s appointment.

And good luck for your GCSE exams in a couple of months – not that you need it, you are going to do just great.  You probably won’t believe it, but you will.  Stop doubting yourself.  Next stop will be your A-Levels, and then who know maybe even to University  ;-)

Take care of yourself and cherish this letter – keep it as a reminder for hope and the knowledge that life will get better and that everything is going to be OK.

From

Rhiann (aged 28)

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…

 

 

 

Wordless Wednesday: Result of trembling legs and falls…

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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 prompt reads as given:

Wordless Wednesday…We all know a picture is worth a 1,000 words.  Post/share a picture that relays a message or story to the viewer.

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Falling Down A Vortex…

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Remember, Alice in Wonderland when she fell down the rabbit hole and found herself in a different world?  Well, recently that has felt like my life.  Except, that instead of finding myself in a world filled with the Cheshire Cat, the White Rabbit and the Mad Hatter; I have instead found myself stuck in world of pain, dizziness, depression, falls and loss of feeling in legs.

No, recently it has not been a happy time, and one of the reasons why I haven’t updated the blog for a while.  Writing in the midst of pain and depression has proved too difficult.  I think, i have also not wanted to wrote about the tough times, as I often worry about sounding too negative and self-absorbed.  However, a good friend recently reminded me that a blog about living with chronic illness should document the bad days as well as the more positive posts.  To keep a blog is to be truthful and to be reflective of life; and life for everyone has its ups and downs, especially when you factor a chronic illness into the equation of life.

The depression crept up on me out of the blue.  I suppose, it wasn’t a surprise that the depression has reappeared; it is only natural, when living with severe and debilitating symptoms for so long,  And the symptoms that have been severe lately has not just been the older symptoms such as the dizziness and weakness in the legs, but the newer symptoms have also been problematic.  Before now, I had only experienced short periods where I have lost all sensation in my legs.  Recently, however the periods with no sensation in my legs, have become much longer; lasting all day even.  For me, it feels so strange and unnerving to feel no sensation, and means that walking is much more difficult as you really need to concentrate and look to where my legs are – and walking become a lot slower than normal!

It was due to the loss of sensation which led to a very bad fall down the stairs, the other evening.  Typical, that I has alone for the night when it happened, having no one around to help me.  Luckily, the fall didn’t result in any broken bones or other significant injuries – just a lot of bruises and a cut on my leg.  The only casualty from the fall, was my Kindle, which now is broken and in need of replacing.  This really upset me, probably more than it would have, if not for the depression.  As many of you know, I have a love of reading, and my Kindle was a lifeline for me on the days where I am unable to get out of bed as it allowed me access to books when I am unable to go to my book shelves.

The casualty from my tumble down the stairs...

The casualty from my fall down the stairs…

However, as the loss of feeling in my legs ended; the feeling coming back, it only resulted in pain, and after the fall, pain like I have never experienced before.

The constant battles with the dizziness and depression; and the battle between pain and loss of sensation in my legs have really thrown me down the vortex and transforming the world that I thought I knew.  But, life with chronic illness can be like that; symptoms disappear and replaced with new ones.  It’s a world that keeps changing.  But hopefully, perhaps one day I can fall down a vortex that leads to my very own Wonderland…

Hospitals, results and losing hope…

Hello to all my readers

Sorry that I have been quiet recently and a distinct lack of posts from me.  Recently, I have been struggling with fatigue, and as well as this have had several hospital appointments which follow the appointment with a consultant specialising in audiovestibular medicine.  For those who do not follow my blog, or who do not know what audiovestibular medicine is, it is a branch of medicine which specialises in the diagnoses, medical treatment and rehabilitation with disorders of hearing and balance.  Doctors who specialise in this area, concentrate on patients with a variety of different problems including dizziness, hearing loss, tinnitus, speech disorders and abnormalities in eye movements.

My first appointment with the registrar back in November, revealed a problem mentioned above.  He noticed that whilst following his pen with my eye, there was a slight delay with my movements which indicated a neurological problem.  The doctor referred me to have some balance tests conducted to determine whether the dizziness is due to a vestibular dysfunction (inner ear disease) or not.  Here is a video which outlines the VNG test:

The test, which happened a fortnight ago was not pleasant and afterwards the dizziness was worse.  Last week, I returned to the hospital for the results…

During the consultation last week, I was asked to perform a test was I was not able to perform the previous week during the VNG test.  This test is known as the Diz-Hallpike test and involves the patient lying on a table with the head hanging over the end of the table. The doctor will then turn your head 30° to 45°.  The doctor during the test will watch your eyes for involuntary eye movements known as nystagmus.   The timing and appearance of the vertigo and nystagmus determines whether the vertigo is caused by an inner ear disorder or the brain.

After completing this particular test, my parents and I were taken back to the consultant’s room and were unfortunately informed that an inner ear disorder have been completely ruled out, and that there were some abnormalities during some of the tests which indicated a  problem with the central nervous system, i.e. the brain.  We were also informed that there is little that can be done, and although they are sending me to a rehabilitation therapist to learn some exercises to try and ease the severity of the dizziness, the consultant was not confident that they would help.

This was obviously not the outcome that we were hoping for.  It is not the first time that I have been told my a medical profession that the dizziness is very likely caused by a neurological condition; and it is not the first time that it is not anything that they can do to treat the dizziness – however, every time that I hear these words, it is like hearing them for the first time, even after accepting them after a previous appointment.  In addition, after repeatedly hearing that the dizziness is a life-long symptom that I will have to deal with, a little part of me still gets extremely upset and despondent.  I have always realised that the dizziness is very likely a neurological problem, and very unlikely to go away but after having it confirmed after various hospital appointments is still feels as if the small glimmer of hope that is inside of me becomes extinguished after hearing those words again and again.

Living with the dizziness, is like living with a permanent shadow following and lurking behind me wherever I go.  Always present and ready to strike at anytime. The dizziness at present is constant, as well as being severe and at times debilitating and coming to the realisation that it is life-long is a hard concept to get my head around and even harder to accept.  There are a number of people that has told me to hold onto hope that there is someone out there who could help me and that there is something that can be done – however the question is; is it wise for someone with a chronic illness after being told that it is a life-long condition to hold onto hope that a cure is out there?  Is holding onto such hope, only going to lead to more heartache and upset? Is it best however, to accept the reality as it is, and move forward with your life as the best you can despite the limitations that the chronic illness places upon the life of the sufferer?  As Joseph Campbell said “We must be willing to let go of the life we have planned, so as to have the life that is waiting for us”.  So, does keeping hold onto hope of some kind of cure, stops us from living the life that we may have not planned, but our new reality?

Do I go in hunt for a cure for the dizziness, which may not even be out there? Or do I simply learn to live and accept the dizziness as a constant part of my life.  It is very hard to accept that this dizziness may never go, and honestly it has really knocked my confidence on going out, but more importantly on going on our cruise in May.  If the dizziness is this severe then, how will I ever be able to enjoy myself?  Will I be able to cope with the dizziness whilst on holiday?  These are the questions that are currently running through my mind.

Simply losing hope but attempting acceptance…

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.

Talking Mental Health…

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Welcome to the twentieth-first 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:

Mental Health Meld: Mental health issues can affect many other conditions.  Write about mental health, emotions, and challenges as they relate to your condition. How does your mental health affect your overall well-being?

Let's talk Mental Health...

Let’s talk Mental Health…

Regarding yesterday’s post about the start of the dizziness in my life, entitled “I still remember..“; it also triggered an anxiety disorder.  Due to the intense dizzy spells that I experienced as a young child and becoming worse as a teenager, it resulted in me worrying about everything; worried about the when the next time the dizziness will occur.  And then when it occurred in places such as a supermarket, or in a particular shop, I would worry that it would happen again and so would avoid that places, in the hopes that I would avoid an attack of the dizziness.  However, this obviously did not stop the dizziness from the occurring; but only resulted in my world from becoming smaller and smaller as I avoided more and more places.  In addition, as a result the dizziness that I kept mentioning to the doctor was put down to the anxiety disorder that I was diagnosed with.  This is the problem with being diagnosed with a mental illness; it is widely acknowledged that mental health patients face difficulty in getting diagnosed and treated for physical illnesses as doctors will often blame their psychiatric diagnosis or the medications that they are taking on the symptoms that patients are experiencing.

A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition...

A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition…

In the end, I got help and treatment from the anxiety disorder, and thanks to therapy and graded exercises my world once again started to become larger as I started to visit the places, I once avoided.  The relaxation techniques that I were taught, helped with the anxiety I was experiencing; although the dizziness was still very much there and still as intense.  Now, I still find that anxiety is still an issue; an issue that can affect my mental and physical health,for example when  the dizziness becomes so intense when out, my first instinct is still to panic and become anxious, although the anxiety I find is something that I am able to control, unlike the symptoms relating to my neurological condition, such as the dizziness, and the weakness and trembling in my legs, etc.

It is not only the anxiety, however that can be a problem for my mental and physical health however; depression is also another mental health issue that I have experience of, and can which still be a problem, years even after it first started.  The depression, can still rear its ugly head, when I am experiencing bad flares in my condition.  I often experience the depression, when my symptoms have been really severe for a long period of time; for example recently the dizziness has been so bad for several weeks now, and that has been making me feel down a lot of the time because of it; and because of the depression, the fatigue that I already experience becomes even worse, and that has a knock-on effect on the rest of my symptoms.

Depression can appear during flares in my condition...

Depression can appear during flares in my condition…

That is the thing with mental health conditions when already living with a physical health condition – it is a vicious circle and one of the health conditions become worse, it automatically affects the other.  So, to survive living with a physical health condition, we also need to look after our mental health…

Do you find that the best way to live well with your chronic illness is to also look after your mental health?  I would love to hear your thoughts and comments regarding this issue.  Please comment below…