Tag

long-standing brain stem lesion

Browsing

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

Hello, readers new and old – hope you are all well.

Or much better than I have been lately anyway – it really hasn’t been a great time for me, with legs giving way much more, becoming weaker, even leaving me in bed for a whole day a couple of weekends ago.  Whenever I attempted to stand, my legs would just collapse from under me…

A lot of people, would think it would be great to spend a whole day in bed, not doing anything – no chores, nothing instead spending the day watching TV, films or listening to music.  However, let me tell you the reality of it – it is so boring being stuck in a bed, I would much rather be doing something much more constructive than watching endless episodes of CSI, despite it being one of my favourite shows.

On topic, I was recently reading an excellent blog post regarding a person’s experience of a condition in which she describes as having ‘many voices’ and in which the community of people with the same condition is large – each sharing their own personal experiences of living with a chronic illness.

And that got me thinking of my condition – long-standing brain stem lesion and spastic paraparesis.  To search information about it, is extremely difficult – most being medical journals, to difficult to understand for those without a medical degree!  And the big fact that I have not met one single other person with either diagnosis.

Many of the information that can be found regarding my condition are those usually found on websites about Multiple Sclerosis, as MS can present with brain stem lesions, and spasticity of which I suffer is a common complaint within the MS Community.

However, I do not have MS, so therefore am unable to really approach MS organisations for support and information.  Near to me is an organisation for people with brain injuries called Headway, however many of the case studies that I have read suggests that the organisation provides support and help for those with acquired brain injuries – usually those sustained in adulthood as a result of an accident or trauma.

So where do I turn for help and support with my condition? I feel as if I am one person, on my own living with this condition with nowhere to turn, or for people to listen and understand just exactly what I am living with day-to-day…

Image: http://www.bbc.co.uk/wales/audiencecouncil/sites/your-voice/

 

Image: http://abledis.com

I think I have previously mentioned that I was taking part in a fantastic project entitled the ‘12-12-12 Project: 12 Month, 12 Journeys, 12 Lessons‘ over at my great friend Marissa’s blog, Abledis.

As part of the project, Marissa featured my condition – long-standing brain stem lesion and spastic paraparesis on her website, learning all about it, and the effects it has on my life and so on.  Also, Marissa asked me to complete a podcast interview with her about my health condition and life, which we completed last week, and is now up for everyone to hear.  You can find the podcast here:

April Podcast Interview: Rhiann Johns

And there was also a special guest featured!!  Who? You’ll have to listen to find out!!

Pin It