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

Regular readers of my blog, and especially those who follow me on social media will know that life recently has been very tough due to the symptoms that are caused by the neurological condition that I am now forced to live with. ¬†The symptoms associated with my neurological condition such as dizziness, fatigue, pain as well as the severe weakness and trembling in the legs have all deteriorated. ¬†And as a ¬†result of this deterioration, it has resulted in the loss in the ability to do a lot of the things that once came so easily, or those activities that I enjoy participating in. ¬†One example, is the great difficulties that I have experienced in visiting our local high street. ¬†Before this sudden deterioration, I found it so easy to be able to park in the town’s car park and walk the moderate distance towards the top end of the town to visit the shops that I like to browse and buy everything that I need. ¬†However, recently due to the deterioration in the symptoms in my legs (the pain, trembling and weakness) even the short walk from the car park to the shops have felt more like the prospect of walking Mount Everest.

Dealing with symptoms can often feel like an uphill battle...
Dealing with symptoms can often feel like an uphill battle…

As a result, my carer has instead had to use the disabled parking bays in the town centre itself, so that I am able to use the amenities that I need to use, and still be able to go to the shops that I like to visit.  This arrangement has been far easier as they are extremely close to all the shops that I regularly shop at, but in all honesty, some days it is still a struggle to go shopping because of the severe weakness and trembling in the legs.  The dizziness, has also caused a very big obstacle in going out because it has become so intense, and has resulted in me having to wear a hat when visiting places (wearing a hat helps to limit the exposure to triggers that can cause vertigo, double vision or make the dizziness worse).

Last week was a particularly bad week, and a trip to town was cancelled after my legs almost gave way in the middle of town. ¬†Instead, because¬†the pain and weakness was so bad, my carer and I returned to the house and watched a film. ¬†It is bad mornings¬†with chronic illness like these which can be difficult for our morale and self-confidence; and very often it can feel that our day is already over thanks to chronic illness, unable to accomplish anything because of debilitating symptoms and so¬†instead we find ourselves spending the rest of a ‘bad day’ spent in bed or lying on the sofa watching a marathon of our favourite TV series (my guilty pleasure of the moment is One Tree Hill).

However, I recently learnt that it does not have to be this way.  I found a blog post that read:

Today is not over yet.

And it is true. ¬†At the time, I wrote off the day that my legs decided not to work¬†properly and had to spend the morning watching a DVD instead of the shopping trip I had planned. ¬†But that was not the end of the day. ¬†After the film, and after I regained enough strength in my legs, my carer and I took a short drive to a nearby coffee shop and had lunch. ¬†It actually turned out to be a lovely trip out and exactly what I needed to take care of myself and my body against the effects that my condition has had on my life. ¬†And perhaps ‘Today is not over yet’¬†is a mantra that we spoonies need to remember. ¬†Just because a day has started off bad because of the effects of chronic illness does not mean the day will be bad. ¬†It does not even mean that the day is over.

Finding joy can often be like seeing a rainbow appearing behind clouds...
Finding joy can often be like seeing a rainbow appearing behind clouds…

We can find joy in the little things on the bad days – a letter or card from a dear friend landing on the doorstep, a cuddle from a furry friend, a favourite song on the radio, someone making our favourite meal. Our silver linings can come from the smallest of things.

So, our chronic illness may have meant that we have frittered away our time doing as little as possible, however as the quote suggests it does not mean that our day is over.  We are still here and we are still very much alive and as long as we are it is not to late to do something, to do anything.  It can provide the perfect opportunity to pursue some self-care practices in order to take care of not just our physical health but also our psychological health.  A few self-care activities may include:

  • having a soothing bath
  • meditating
  • reading
  • pampering yourself, e.g. getting hair done or even a manicure
  • crafting
  • can even be as simple as setting limits for yourself

Even if you do end up doing something, it may be¬†something that we hadn’t planned on doing or even wanted to do. ¬†However,¬†it might just end up being something we needed or better than originally planned. ¬†Just like my impromptu visit to a local coffee shop.

So next time, you have had a bad start (or at any point of the day, really) to the day and your thought is navigating towards writing the entire day off as a bad one, just remember:

Today is not over yet.

Struggling with Storms but hoping for a Rainbow…

Well, today marks the start of a brand new start month.  The start of something new Рwhether it be a new day, month or year.  It is like a fresh, white piece of paper, in which the past and everything that has come before is forgotten and instead we are allowed to start afresh.  To start our story anew.  It opens up new possibilities and opportunities and allows us the hope for a better today and tomorrow (and beyond).

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And this is most important when living with a long-term health condition.  To live with illness everyday is most difficult; and perhaps one of the most difficult aspects of living with a chronic illness, is the unpredictability of it and the unknown of what each new day will bring.  Even with every little sign of illness such as a headache, for example brings the fear of the start of new symptoms or even the possibility of a deterioration in our illness narrative.  Therefore, hope is a vital thread for us to hold onto as it allows the possibility of a life without chronic illness and our lives dictated to by our symptoms.

During the recent weeks since by last blog post, I have been trying to remember these points.

As much as I have been trying to remain positive and to hold onto the invisible thread of ‘hope’, I however have been living with the storm clouds above my head. ¬†Just before the beginning of 2015, I had the hope that this will be a really good year. ¬†Don’t get me wrong, I do not have the irrational belief that I would miraculously be cured during the coming year, but as I had a few good weeks before Christmas, I did have the hope however that it would be the year that my symptoms would not deteriorate and I would experience a decline in the severity of my symptoms.

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It would seem that this particular thread of hope has unravelled.

In fact these past few weeks has been the hardest weeks that I have experienced in relation to my chronic illness for a long time.  It often feels that my body is taken a severe battering from all of my symptoms.  The dizziness has been so severe, that even doing the simplest things extremely difficult.  The trembling and weakness in the legs has also been very severe, that as my legs are feeling extremely jelly-like, that recently I have lost all confidence in being able to visit our local town centre and walking around the shops.  Using my wheelchair is obviously one option, however due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even worse.

Everyday of late has felt like an uphill battle from the moment I get up out of bed until I go to bed later that day.  Because of the severity of the dizziness, nausea, weakness as well as the increased levels in fatigue, has meant that I often just want to go to bed and burrow myself under my covers and stay there for the forseeable future.  However, I have not given into my longings and have been pushing myself to still going out, although am finding my trips out have been considerably shorter than previous months.

During my last post, I discussed the feelings of loneliness and isolation that can often accompany chronic illness, and during this recent battle these feelings have unfortunately only increased.  Perhaps one of the main reasons is not letting anyone in my close circle of friends and family know just how bad things have gotten.  Of those who are in my close circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  This has often only increased the feelings of depression.  Often thoughts of whether I am liked within my circle friends often follow, stupid I know but perhaps illustrates how difficult things have gotten recently.

I am trying to think of some ways to widen my social life, and perhaps make way for new friends, perhaps even considering the social network Meet Up and setting up a group for those like me who are living with a chronic illness or disability and who are also socially isolated because of it, just a thought in progress at this stage but would love to hear your thoughts and whether anyone has had any success with the site.

At the moment I am dealing with dark storm clouds still have hope of the appearance of a bright and beautiful rainbow in the hopefully not so distant future…

RainbowShower

 

Life in a Spin

Dizziness.  Giddiness. Vertigo.  Lightheadedness.  Wooziness.  Disequilibrium.  Unsteadiness.  Faintness.

Whatever word you choose to describe it, dizziness is defined as “having or involving a sensation of spinning around and losing one’s balance.”

It is also a symptom that I have lived with since early childhood.  The reasons for the dizziness is as a result of my neurological condition; a long-standing brain stem lesion.  Although we know the cause of the dizziness, we are unsure of the reason why the dizziness and vertigo occurs, and what it worse we have no way to treat or cure this very life-limiting symptom.  In the past I have tried various medications as well as undertaking vestibular rehabilitation exercises but unfortunately nothing has worked in even decreasing the severity of the moving sensations that I have to live with twenty-four seven every day.

Dizziness is not just an unpleasant symptom; it is also one which is life-limiting (Click to Tweet)

Dizziness can send you into a spin
Dizziness can send you into a spin

This condition and the symptoms, such as the dizziness has changed me.  It has also affected every part of my life.

Dizziness has not only changed me but it also affects every part of my life (Click to Tweet)

I cannot stand without feeling my body swaying due to the balance problems that the dizziness and vertigo causes; I find it difficult to be able to leave the house on my own due to the disorientation that dizziness and vertigo can cause.  Some days that I am so dizzy and the spinning is so extreme that I am unable to get out of bed.

Through this whole experience and after living with dizziness for so long, I have come to learn how little dizziness and vertigo is understood within the medical community.  According to some online resources, dizziness is one of the most difficult complaints to assess because it is a subjective sensation with many differing descriptions of the experience.  Furthermore, doctors are also unable to directly and objectively measure dizziness.  And mirroring my own experiences, patients complaining of dizziness and vertigo will see a number of different specialists, as dizziness and vertigo can be caused by a multitude of different pathophysiological processes, thereby making diagnosis particularly difficult.

As a result of it not being understood within the medical community, it is therefore also not understood within the wider community.  That is why awareness events are so important.  Now, there may not be an awareness week for my particular diagnosis, but the American organisation VEDA (Vestibular Disorders Association) is this week helping to raise awareness of Balance or Vestibular Disorders this week (September 15th РSeptember 21st) of which dizziness and vertigo is a classic symptom.

The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. – VEDA website

Vestibular disorders can also include the following symptoms:

  • Visual-spatial problems
  • Clumsiness
  • Fatigue
  • Holding head in a tilted position
  • Difficulty in concentrating
  • Tendency to touch or hold onto something when standing
  • Poor hand-eye coordination

See this informative infographic from VEDA to find out more about these disorders.

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There may not be an awareness week for my neurological condition anytime soon but I am happy to support an awareness event to raise awareness of a symptom that greatly affects my life. ¬†I may not live with a vestibular condition myself, but after living with dizziness and vertigo for so long, I can understand and empathise with those who do. ¬†So, I will help VEDA and stand in solidarity with everyone affected by dizziness, vertigo and balance conditions and do so whilst wearing my ‘Dizzy not Drunk’ t-shirt!!

 

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

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

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

I’m supporting Balance Awareness Week! Will you?

Every year in September VEDA (Vestibular Disorders Association) aims to raise awareness for vestibular conditions.  They also aim  raise money for research into these disorders which causes dizziness and affects the balance system.

According to the VEDA website:

The goal of Balance Awareness Week is to reduce the time it takes to diagnose a vestibular disorder. We help patients recognize the symptoms of a vestibular disorder and urge them to seek help from a professional specialist. We also encourage family and friends to learn more about vestibular disorders so they can support their loved ones’ who are suffering from dizziness and other debilitating symptoms.

Although, I do not suffer from a vestibular disorder myself; dizziness and disturbances in my balance is a large part of my life. ¬†Due to a neurological condition, I am constantly dizzy as well as frequent episodes of vertigo and as a result my balance is affected with these symptoms affecting my gait (the way I walk) and causing falls. ¬†Therefore, I understand and have experienced the loneliness, frustration and isolation these symptoms can cause and as a result I am supporting the ‘Balance Awareness Week’ (September 15th – September 21st 2014).

One way in which I have already shown my support for VEDA and raise awareness for Balance disorders is by purchasing a t-shirt designed by my great friend, Marissa. ¬†Marissa has been a fantastic advocate for everyone affected by dizziness and vestibular conditions. ¬†Marissa not only blogs about her own battle with dizziness and balance issues at her site Abledis.com, but she also founded ‘The Spin Sisters’ a podcast that discusses life with chronic dizziness and coping with a chronic condition. ¬†To find out more about why Marissa is raising money and helping VEDA, then you can read so by viewing her personal campaign page here.

balanceawarnesstshirts

There are two t-shirts available in the Balance Awareness storefront – one funky and lighthearted design that features the phrase ‘Dizzy not Drunk’. ¬†This is because many people who suffers with vestibular disorders often are accused of being drunk because it can result in an unsteady gait when walking which is also a sign of intoxication. ¬†The other design is a simple and plain design with the hashtag ‘Cure Dizziness’ and ‘Balance Awareness Week 2014′ underneath. ¬†The ‘Cure Dizziness’ design is available in adult (men and women) and youth sizes.

There is only six days left on the t-shirt campaign, so please if you can then purchase your own to show support for everyone affected by dizziness and balance disorders.  These disorders can affect anyone at anytime and is something that could affect at you at some point.  As Marissa says:

Rocking an awareness t-shirt means we all get to stand in solidarity with those suffering in silence‚Ķ PLUS you’re getting a cool looking t-shirt!

 

If you aren’t able to get your own t-shirt then please ¬†help spread the word and raise awareness about such conditions on social media and help all those who are suffering with such conditions in silence. ¬†Awareness is a catalyst for a change so help and be a change agent!

In the dark and in the unknown…

This is a very hard post to write.  Not only because of its contents but also because of the way recent events has left me feeling, which is very down if I am to be honest with you all.

This is because last Tuesday, I had yet another hospital appointment with the neurological consultant that I am under.  The purpose of this visit was a follow-up on how I have progressed since the last visit but also to find out the results of the tests that I have had conducted as well as the findings from the other consultants that I have seen, since the last time that I saw him.  All of the test results came back clear, however and as a result we are no more closer to finding a diagnosis than we were before.

Of course, it is a relief to know that there isn’t anything seriously wrong, but at the same time I was devastated at the lack of positive test results and as a result no diagnosis. ¬†During another neurological examination, when asked to slide my ankle¬†down the opposite leg, the bent leg started going into spasm. ¬†At this finding, the neurologist’s face became puzzled, but at this he could tell something is¬†wrong but is at a loss what it could be. ¬†Interestingly, he noticed findings that were not present during the last examination.

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So what now?  Well, now he has decided to test for some genetic causes to explain my symptoms, including:

  • Dopa-responsive dystonia
  • Dystonia
  • Spinocerebellar ataxia

I think I am partly becoming down because of the unknown of this situation.  The unknown of what exactly is wrong with me as well as the unknown of what I am facing.  In my opinion, not knowing is often the worse than the reality.  If I had a definitive diagnosis, then at least I would have an idea of what may happen and to make plans accordingly.  However, not knowing is similar to being stuck in limbo; stuck in the middle of nowhere and at a lost as to the direction my life is headed.

“Not having a definitive diagnosis is like being stuck in limbo…” (Click to Tweet)

I am also worried that if the doctor’s are a loss as to the cause of my symptoms than they are eventually going to be labelled as being psychological. ¬†It is true that in the past I have had problems with both depression and anxiety but I am positive that these were as a result of my undetermined condition. ¬†For example, I know that the anxiety started after the dizziness – who would not become anxious after experiencing something so unpleasant and not knowing what was happening? ¬†Then there were the thoughts that I should have asked more question, for example should I have asked for a MRI with contrast – could that have shown something a regular MRI would not? ¬†Although I am worried about this, the neurologist that I am under seems to be¬†determined to find the cause of my symptoms and is even willing to refer me to someone else in the department or even a possibility of being referred to a specialist neurological hospital in London.

But in the meantime, it looks like I may be stuck in limbo for the forseeable future…

 

So I am interested in hearing your stories of diagnosis…How long did you wait¬†¬†for a diagnosis? If you are still waiting for a diagnosis, how do you feel about it?

Am also interested in the views of those living with the disorders that are mentioned above…How long did you wait to be diagnosed? ¬†How were you finally diagnosed?

Feel free to comment below…

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

tumblr_lr8hwvvEai1qmupweo1_500 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.;

Tweet: The term ‘spoonie’…makes us feel that we are part of a community… http://ctt.ec/XB4rF+ via @serenebutterfly

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. images 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.

Tweet: Friends are like stars. You don’t always see them, but you know they are always there http://ctt.ec/HUlcN+ via @serenebutterfly

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).