Tag

spastic paraparesis

Browsing
In Chronic Illness

NHBPM Day Fourteen: Anatomy Post – Affected by my Symptoms

No Comments

Welcome everybody; am writing this post on a quiet Sunday afternoon.  For today I have chosen a short prompt as this particular day I really am not feeling well.  I have chosen a prompt from an earlier date.  In the prompt entitled ‘Anatomy Post’ it was asked that we re-labelled an anatomy picture with new names or descriptions the body parts.  I have chosen to label the different parts of the body which are affected by the differing symptoms that are caused by my condition; some of them are invisible such as the dizziness and vertigo so I have used the body part in which these symptoms originate (i.e. the brain).

by
Keep Reading
In Chronic Illness

NHBPM Day Eight: O Health! What do I think of thee? Let me count the ways!

No Comments

Dear health,

I am not sure quite what to say to you, as I have never written a letter like this before but I will try my best.

I find you very odd; I experience so many fluctuations in my health and how I feel, and the severity in which I experience the symptoms that you cause me.  These fluctuations not only change day by day, but can also change hour from hour, or even minute by minute!!  And it’s these fluctuations that stops me from leading a normal life. This condition does not allow me the ability to make plans for nights out with friends, or holidays or full days out, as I never know how I will feel on that particular day, or even I am having a rare ‘good’ day, I have no knowledge whether it will remain that way, or if I will be taken ill sometime during the trip.

Living with you day-to-day is hard, and it’s particularly hard when questions are raised by others about you.  You are rare, and not understood, even doctors can be baffled by you.  This then causes the mammoth task of trying to explain you – what you are, how you affect me and so on.  I would wish no chronic illness on anyone, but one which is especially difficult as you are is particularly hard to deal with.  The loneliness and isolation that you cause, can often be overwhelming; no one can understand exactly how I feel, or what it is exactly like living with you.  There are no support groups for people like me, living with you, no friends who I can call on when times are tough and I really need to vent; I have several confidantes – some online, some I can see in real life, but still no one that can just get ‘you’ and how you treat me; how you affect me.

It can be hard finding the right support with a chronic illness – especially one which is rare

I have lived with you for so many years now; many of those years I did not even know of your existence.  Now, you are constantly making your presence felt, like a loud, harsh scream being blasted in my ear.  Every turn I make, you are their, like a shadow; a dark figure lurking, waiting.  And then within a blink of an eye, my legs will give out; lying on the ground, unable to get up due to the weakness in the legs.  You causing embarrassment; you causing injuries and pain.  The doctors tell me that there’s nothing that can be done – no treatments to help, no reigns that I can attach to keep you under control.  When I was diagnosed with you, at first there was relief – relief at knowing that there was a name for you; relief that finally I had validation from the doctors’ that you were very much real, and not in my head as it was often claimed.  Then, I have felt despair; despair at realising that there was nothing anyone could do to treat eliminate you from life.  It was like being blindfolded and then left in the middle in the centre of a garden maze where I am expected to find the exit without any guidance and without the ability to see exactly where I was going.

Life with a chronic illness…like navigating through a large maze!!

You have made me your victim, from something that I cannot escape.  Never will I escape you; you live deep within me, deep within my brain, there will you be there forever.  But I will not let you win, I will not let you beat me, and I will be happy despite you, that I am determined of.  Because of you, I have found inner strength, have found things that I am good at, and have found ways in which I can help others and participate in social activities and pastimes. Despite you, I have found friends whom I can talk to and despite the problems you cause, they like me for who I am, and look beyond my imperfections.

I may not be able to beat you, but because of you, I am stronger than I have realised; have made me aware that I can overcome certain obstacles and overcome challenges that come within my path.

And for that I thank you.

Rhiann x

by
Keep Reading
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

NHBPM Day Three: “I don’t know about this but I’d like to…”

No Comments

This prompt for the National Health Blog Post Month is all about what we would like to know but don’t.

For me, I would like to know more about the spastic paraparesis that plagues my life. I know the basics – it causes severe stiffness and weakness in the legs. But that’s about all I know about the condition, and something which wasn’t even explained to me by the neurologist whom diagnosed it – I had to learn about it from reading a letter he sent to my GP!! There have been some journal articles that I have come across which mentioned the condition in some detail however as it was from a medical journal it was very technical and a lot of medical jargon that I probably couldn’t pronounce let alone understand!!

Wordle: Spastic Paraparesis

Not even searching Google or other search engines have shed any more light on the subject; most of what is written concerns hereditary spastic paraparesis or tropical spastic paraparesis, which may be of some use but might not correctly explain the condition as it pertains to my individual circumstance.

It would be of use to know why I have developed the spastic paraparesis and how the condition itself relates to the long-standing brain stem lesion; how these two conditions fit together and causes the symptoms that I experience on a daily basis. In addition it would be of use to know the prognosis; whether it would be something which could deteriorate over time or which should remain stable for the remainder of my life. Signs which I should be looking out for which could forewarn me about possible deterioration – information such as this is vital for someone with a chronic illness; it gives the ability to plan ahead for the future and to make contingency plans if the worst case scenarios were to play out.

And lastly there is the case of the possible treatment options for the condition. From the little information that I have been able to gather regarding spastic paraparesis one of the options is physiotherapy. Unfortunately, after many sessions of physiotherapy with a neurophysiotherapist (a physiotherapist whom specialises in treating patients with neurological conditions) I was discharged as it was apparent that there was no improvement and the physiotherapy was not working. Neither the physiotherapist or my GP offered any alternatives to the physiotherapy and besides the medication that I take to ease the neuropathic pain I experience; therefore knowing alternative and all other treatment offers would be a must!

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
Pin It