Tag

dizziness

Browsing
In Chronic Illness

NHBPM Day Two: The Annoyance of Living With a Neurological Condition!

No Comments

What I have chosen to write about doesn’t really constitute as being ‘weird’ but more of a ‘nuisance.’  What is the nuisance aspect of my health condition?

It would have to be the unpredictable nature of the condition – never knowing when I am next going to become unwell; when the vertigo is going to come on.  One minute I can be feeling quite good (due to the constant dizziness I never feel one hundred per cent) and then BAM out of nowhere it comes on and catches me by surprise.   Life with a neurological condition like mine is really like living on a rollercoaster!

Similarly, with the weakness in my legs, and the problems I experience with them giving way can also be unpredictable and will do so suddenly out of the blue.  On occasions I have gone out, browsing the stores in my local town and then all of a sudden I am on the floor as my legs have collapsed from under me.

As you can imagine this can be a nightmare, especially when making plans with others especially in advance as I can never know how I am going to feel on that particular day; or whether I will become unwell at the event or night out.   And my legs also makes it very difficult to make plans or even to go out as I have no idea when the next time they are going to give way, and as I am often unable to get up after a fall it can make it very awkward and embarrassing if I do suffer one when out, which means that I am only able to go out for short periods of time when I do to decrease the risks of any collapses as standing for too long or over exertion can be a trigger of these attacks.

And there is the suspicion of other people as the randomness of how one minute I feel fine, and the next I am absolutely giddy for no apparent reason confuses them.  It’s easy to assume that the person is faking or exaggerating the symptoms when they seemingly appear out of nowhere; but this isn’t the case, believe me I would much rather feel absolutely normal in my daily life and set out to achieve everything; to live a normal and exciting life – to able to travel, hold down a full-time job, or simply by going out with friends to parties or nightclubs.  However, my conditions stops me from doing these things; and sometimes it’s just a struggle to get up out of bed every morning and to complete the little chores that need to be completed.  I would much rather be living my life rather than by simply existing within it.

by
Keep Reading
In Chronic Illness

Invisible Illness Panel: Journey to Diagnosis with an Invisible Illness

No Comments

Hello to all my readers

I would like to take this opportunity to thank Christine Miserandino (@bydls) of ‘But You Don’t Look Sick‘ and WEGO Health for inviting me to take part in the Health Activist Roundtable yesterday as well as the other participants: Michele (@lifeaftertrauma), Andrea (@thegreatbowelmovement) and Amy (@abeeliever).

Unfortunately, there were some technical difficulties on my end which prevented me from fully participating so thought I would take an opportunity to discuss my thoughts on some of the issues that were discussed.

Topic 1: How did it feel to have symptoms but no succinct diagnosis? 

As with most people, I think that frustration is the first emotion that people feel when experiencing symptoms without an accurate diagnosis.  My frustration seemed to stem from the lack of understanding from the doctors, a lot of what is written regarding dizziness seems to be directed towards senior citizens, so when I presented with dizziness at the age of 8 many doctors were simply stumped.

Frustration is certainly a key word in terms of invisible illness – frustration as the problems and all what is associated with it cannot be seen so is often met with scepticism from medical professionals, as if we are faking and just want some attention.  Frustration as often with many illnesses, test after test comes back clear, and no cause can  be found and so that cycle continues time and time again, with a definitive diagnosis taking months and sometimes years to come to fruition.

Then instead of doing full investigations on what may be the cause, I was stuck with the label of ‘anxiety’, stating that the anxiety was simply psychosomatic – the easy diagnosis, the one doctors seem to use when they are truly stumped and  haven’t a clue what was going on or are too lazy to carry out full investigations or even write referrals.  Another emotion is loneliness and isolation – all caused by the lack of knowledge or understanding of what is going on inside of me, and having no one around who is going through the exact same experiences as myself.  This all started when I was 8, when the internet was still in its infancy and was something that I did not have access to, and social media certainly did not exist.  If only it happened when I was older and had access to the internet and social media sites, then I may not have felt that loneliness and isolation.  I just felt so different from my friends and peers from school, something was happening to me, something which isn’t visible, and so was not really understood by anyone.

Interestingly, in terms of the problems with the legs and the symptoms of the heaviness and stiffness associated with the spastic paraparesis, I only found out about them after the diagnosis.  As the cause happened at birth, I have always experienced these problems with my legs, so thought they were normal as I hadn’t known any different.  So, is important to remember that every little experience inside of your body that feels different or normal should be noted and talked about with the doctor – after all it could hold the key to getting that final diagnosis…

Topic 2: How did you navigate the health system during your quest for a diagnosis?

This is an interesting topic in terms of the UK Health System, as obviously it is extremely different to that of the US Health System.  As in the UK we have a National Health System, so we do not pay to go and see medical professionals or even for treatment after receiving a diagnosis.

This obviously provides challenges in itself, such as long waiting times to see specialists and consultants, especially within certain specialities such as neurology.  So, often GP’s will only send referrals when it is really needed.

And as I was labelled with a ‘psychosomatic related condition’ then doctors became very sceptical regarding any symptoms that I was experiencing, linking them all to the anxiety disorder and depression that was diagnosed. Once you are stuck with a certain label it is certainly very difficult to get rid of that particular label, and instead of investigating the problems, I was referred to psychologists, psychiatrists, occupational therapists and other mental health professionals – they didn’t seem to want to believe me when I said the anxiety problems that I was experiencing all started after the dizziness, and the panic attacks that I eventually had started after the dizziness had come on.  I became dizzy and then I started panicking, instead of the other way around.

Deep down, I had always known or at least suspected that there was something wrong, that there was an problems inside of me that was the cause of all these symptoms, and it wasn’t until I left university and grown up somewhat, I became advocating for myself and pushed for being referred to consultants and specialists as I just wanted to find out what was wrong or at least put my mind at ease that it wasn’t anything serious.

Advocacy is an important part of the journey towards diagnosis, you really need to learn to stand up for yourself with doctors and other medical professionals!  Trust me,  if you stay quiet and meek as I often was you may never find out those all important questions!

Topic 3: Did the internet or social media help you in finding your diagnosis?

As I said before, when all of the symptoms started I was very young, and the internet was still in its infancy and as I had no real access to it as we didn’t have it at home.  Once I got a bit older, I admit I did ‘google’ the symptoms I was experiencing.  This was when I found that much of what is written about dizziness and balance related problems, will often regard it as something which affects the senior population, and could not find any information regarding these problems within my particular age group.

No, the internet and social media really didn’t help through the particular diagnosis stage, but has really helped me since then.  The support I have found since then has been incredible and have been lucky to have found life-long friends from various support groups as well as people I have met through Twitter, Facebook and of course, WEGO Health!

Topic 4: have you turned to the internet with symptoms or how your symptoms relate to your diagnosis and what goes with it?

Before the diagnosis, I had to really stop myself from constantly ‘googling’ my particular symptoms as it can be extremely frightening, especially when all the worst-case scenarios are presented on the screen.  As often what happens with new medical students you will convince yourself that you have something terribly wrong with you!

However, since the diagnosis I have done some research on the brain stem and much on neurology, and have found that damage to certain areas of the brain stem certainly explains the symptoms I have experienced and continue to experience.  Looks like the doctors were finally right!

Topic 5: How did you feel to finally get your diagnosis? 

I found it to be a very bittersweet experience, on the one hand I was so relieved to have the diagnosis – I finally got the validation from the doctors, that all what I have been experiencing wasn’t in my head after all, and instead was caused by damage to an area of the brain.  However, it was also quite upsetting as the consultant informed me that there wasn’t anything that can be done to treat or cure the condition, only certain medications that could attempt to control the severity of the symptoms, which unfortunately I have found not to be effective and continue to be severely affected by certain symptoms.  The consultant further informed that the symptoms and the lesion to the brain stem seems to be stable and there should be no further deterioration in symptoms.  unfortunately this hasn’t been the case as certain symptoms have deteriorated, some quite markedly where I am the point of being assessed for a wheelchair due to the weakness in the legs.

Another point to note is that doctors do not know everything; even these top consultants!

Topic 6: How did the diagnosis change the way you thought of your health and body, etc?

As I said before, I finally felt validated and relieved that there was an explanation of my symptoms.  Now that I finally knew after years of searching and endless doctors appointments and hospital visits I could finally live instead of merely existing within my body and my life in general.

Topic 7: How did your diagnosis change the way others thought about you and your health?

I’m not sure as I haven’t really discussed it with anyone but I now notice that nobody really says things like they used to.  Things like “You should get out more”, “You need to push yourself to be able to do things” and so on.  They have now come to realise that the symptoms were not imagined or psychosomatic, and there was a physical reason for them.  It’s like they think no longer think that I am to blame for what has happened to be and how I am – it’s like they now think I have a valid excuse to be how I am.

Topic 8: Do you have any tips for those currently searching for a diagnosis; now that we are over that bridge what would you tell someone still on the other side?

I would advise someone still looking for that validation  and important diagnosis to not to give up, and to not be afraid to challenge doctors or to ask questions.  We all need to speak up and to advocate for ourselves – if my parents and I didn’t then I may still be where I was 2 years ago; without answers, validation or that diagnosis.

 

Thank you, and thanks again to everyone at WEGO Health and to Christine for being a wonderful hostess!

by
Keep Reading
In Chronic Illness

How do you solve a problem like…a high ceiling?

No Comments

Sorry for the lack of an update this week – truth be told, I haven’t had the greatest weeks with most of it spent lying on the sofa with the comfort of a quilt and watching endless hours of television (or at least trying to!!) feeling particularly dizzy, weak, nauseous and with frequent episodes of the ‘room spinning’ motion.

It started Wednesday evening and I believe that the deterioration in my condition was due to the afternoon I spent at ‘Life 4 Living’; a local group I attend every week which promotes enjoyment, positivity and friendship.  Don’t get me wrong, I love my time at the group, and is something that I really look forward to, however, this week we had a local singer coming to the group to perform and so we left the confines of our usual room to conduct the session in the Day Centre’s Main Hall.

Now as I may have mentioned before that one of the triggers that seem to affect me much more than anything else are high ceilings.  The very first dizzy spell I experienced was in a DIY Superstore with vast ceilings and being in a place with high ceilings can bring on an attack of vertigo, causing my vision to become out of focus, balance becomes even more unsteady.  I have no idea why these places affect me so much but they just do – if anyone knows any such explanation I would love to know!!  The ceiling wasn’t particularly, much lower than what you would find to expect in a superstore for example, but as there was dips within the ceiling itself – progressing from higher to lower and so on just threw me for a loop – as if it was too much visual stimuli for my brain to process!

Unfortunately for me everywhere and every new store that is opening up seems to be big vast and open as well as the problematic high ceilings – as if the world I live in now no longer is fit for me, a lot of places coming out-of-bounds for me and my condition, nowhere being accessible for people ‘like’ me.

My Nemesis!

We had prior warning to the change of venue and knew what it was like in there beforehand so I was able to bring my Mum along for support and to help me if taken unwell. On a positive note, I did manage to stay in the hall for the entire group session (close to 3 hours) but even so I uncomfortable and unwell the entire time, and my balance was really bad also – thank god Mum was there to get me drinks and to help me get my food from the buffet.  As much as I did want there, I just wanted to enjoy myself with my Mum whom I do not get to go out with anymore on account with the severity of my symptoms as well as the awkwardness of spending a long amount of time out causes due to the weakness in my legs, and Mum was also looking forward to seeing the singer perform so didn’t want to spoil it for her.

The most embarrassing part came towards the end of the afternoon when coming to leave my legs seized up on me causing me to crash to the floor!! But still a good time was had by all!

And since then, I have really gone downhill, legs weak I have hardly been able to stand and generally feeling weak and lethargic – as if those three short hours just took everything out of me.  So here’s to a quick recovery in time for volunteering Monday and especially to the next meeting of ‘Life 4 Living’!!

by
Keep Reading
In Chronic Illness

My Life…My Truth

No Comments

You think that you know, but you have no idea what living with my condition is like.  People make snap judgements based upon many different factors such as appearance, body language, posture and so on.

So, I have decided to write a post regarding misconceptions regarding my condition and my life that people may have, inspired by WEGO Health’s ‘True Life Tuesday Blog Party’.

The first misconception has that as I appear ‘normal’, I cannot possibly be disabled.  However hidden disabilities do exist and exist in many different forms – such as mental illness, learning disabilities and many neurological conditions such as my own.  Hidden disabilities can create significant limitations for the person, the only difference is that we cannot see these limitations and barriers as we can with those who are blind in a wheelchair.  Take my case for example, the weakness in my legs are not visible to the outside world, but it does and affects me greatly such as not being able to stand for very long and experiencing many falls daily.

Image: BBC News

“Your dizziness is caused by anxiety; you just need to learn to relax” is one misconception that I have experienced by many people over the years – especially by doctors.  However, although anxiety does play a part as I often felt anxious about the dizziness, which only seemed to magnify the unpleasant symptom even more.  Although relaxation and breathing exercises did help with feeling calmer and less anxious, it did not help regarding the dizziness, and was still very much present in my daily life.  As anxiety and other psychological problems was not the root cause of the dizziness but instead a by-product of it.

“You are constantly falling over, you must be drunk” is another misconception that many people may think when seeing me, as I am often swaying or stumbling and falling over, many symptoms people exhibit when intoxicated.  However, with neurological disorders such as mine and many others, the unsteadiness and constant imbalance is caused by the lesions that exist within my brain stem – causing dizziness, problems with balance, and in my case stiffness and weakness in my legs.  The spastic paraparesis often causes great difficulty with walking, especially when they are weak, as they often just give way from under me with no warning causing falls.

“You don’t look sick, you must be feeling fine” is one which I am sure many people with hidden disabilities or invisible illnesses such as mine often experience in daily life.  People make judgements based solely on appearance – but just because someone may look fine doesn’t necessarily mean they feel good on the inside.  Due to the long-standing brain stem lesion, I experience constant dizziness with frequent episodes of vertigo and consequently often feel very unwell, but as a young woman, when going out I don’t want to look ill, so I use make-up to hide the dark circles under my eyes – to give me a natural healthy glow.

And  my last misconception is based upon glances I receive when I am out using my crutch.  These stares and looks seem to say “Why the hell are you using that crutch, you don’t seem to need it”.  Again, as I am not exhibiting a broken leg or some other sign of injury, I couldn’t possibly need to use an aid such as a crutch, to look at me I look perfectly  ‘normal’ and ‘healthy’ but hiding deep inside are lesions causing imbalance and weakness in legs and so on, often leading to stumbles and falls, and using a crutch makes me feel much more stable when walking.

So, these are the misconceptions regarding my health condition.  Try and imagine a person exhibiting some of the symptoms I experience, are these any other misconceptions or judgements that you might make regarding that person? Would love to hear your thoughts and suggestions…

by
Keep Reading
In Chronic Illness

HAWMC Day 27: 5 Challenges and 5 Small Victories…

No Comments

Welcome Everyone to another edition of ‘My Brain Lesion and Me’.  A new post for a new day of the WEGO Health Activist Writer’s Month Challenge, in which I have been writing a new post every day throughout the month of April.  Today’s prompt reads the following:

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.

My 5 Challenges:

  1. The fact that the condition is invisible, unable to see the suffering that I go through or when everyone presumes that I am healthy because I look ‘normal’.  Especially when going to see doctors and consultants, sitting there and having to justify why you have taking up an appointment to see them as you look fine and healthy.  Having some doctors not believing the symptoms that I am experiencing are real, and using the “it’s all in your head” excuse when they can’t find an explanation for the symptoms
  2. Not being able to make plans – It’s very hard living with a condition which fluctuates between ‘not  feeling too bad’ and able to function on some level and ‘feeling absolutely terrible’ and being hold up in bed, feeling as sick as a dog! And as I am unaware of how I am going to feel on a particular day or not knowing when symptoms are going to arise, it makes it so difficult being able to make definitive plans on going anywhere.  Am unable to book those tickets to see a concert that I want as I do not know how I will feel on that day, and so on.  And as you cancel plans on going out with friends, they soon stop calling and asking, and then are left with feelings of loneliness and isolation, even as if your friends are ostracising you, as if your condition is somehow contagious.
  3. Not being able to leave the house unaccompanied due to the risk of injury or the onset of an attack of vertigo.  This is particularly hard, especially as friends have come and gone in my life, which only really leaves my parents taking me to places where I may want to go or need to go.  And of course they both need to work, leaving me the majority of the time being stuck in the house alone, lonely and depressed without company.
  4. The weakness and unpredictable nature of my legs – As I have previously mentioned due to the spastic paraparesis, my legs are incredible weak and tend to collapse from under me with no warning, and also means that I am unable to stand for very long.  This means that if I am going out anywhere, it can really only be for only a short period of time, or if I am going out for a while for any reason, I need to take regular breaks to sit down in case of a fall and to prevent an injury occurring.
  5. Being reliant and a ‘burden’ on other people.  I would love to be much more independent and being able to do much more things for myself.  There are so many ambitions and little things that I have wanted to achieve such as passing my driving test, which I am unable to do because of the condition.
My 5 Small Victories:
  1. The friends that I have made on Social Networks such as Facebook and other support groups.  These amazing people have really kept me going through the dark and painful times in my life.  I live for the meetings on Skype, where we discuss our conditions and how we are feeling, picking those up when they are down and celebrating our achievements.  They have become like a second family to me, and are all amazing and special people. It’s also amazing to have people there who can relate and know what I am going through and reminds me that I am not alone.
  2. Being able to achieve little goals such as doing some chores around the house for my Mum, or doing a little bit of cooking for myself, is at times a major achievement for me as I often feel so unwell, and often having to battle through especially when I have the tremors in my legs, making it so difficult to stand.  And is also a great reminder that even though I do have a disability that I still have skills and other things that I can offer.
  3. Going somewhere new without any problems is sometimes a major victory for me, especially as I often feel anxious about going somewhere new, not knowing what it’s going to be like there, as particular features such as high ceilings, or particular lights can set off an episode of vertigo.  It also creates anxiety as even if it hasn’t any features which I find triggers vertigo, I still am unable to determine how I am going to feel once I’m there, or if my legs are going to collapse from under me leading to a fall, which can be very embarrassing in public places with everybody looking.
  4. Completing voluntary work every week is a small victory that I can say that I have achieved.  Even if I feel relatively unwell, or am having troubles with my legs I still am able to push through to go to the Resource Centre, where my voluntary placement is based.  It provides myself with the opportunity to leave the house for a few hours every week, being able to talk to new people, and being able to make themselves feel good about themselves or helping them in some small way is fantastic and again is a great reminder that I still have things I am able to offer.  It can also be a great way to forget about your own troubles for a while, and to focus on others can be very uplifting.
  5. My major accomplishment that I have achieved has to be completing my degree in Psychology.  Having the problems that I do, made it so much harder to achieve – but I still managed it.  Just goes to show that even with a chronic condition as myself doesn’t have to stop you from achieving something that you want from life – I’m unable to drive or even learning to drive but gaining a degree is something that I CAN achieve!!
This has been a great prompt – and has been a great way of thinking differently about my condition and the ways in which it affects me.  The Small Victories section and was great at being able to think positively and ways in which we with health condition such as myself can still contribute in the community at large.  Thank you WEGO Health!
Again would love to hear from you all regarding your thoughts.  What are your Challenges and Small Victories in life?
by
Keep Reading
Pin It