Sunday, June 14, 2015

What happened yesterday?

Here is the last of the posts talking about some of the issues that I am currently dealing with.  Please remember these are simply my writings about my personal experience from my journals if anything in this raises concerns for you please see your dr or a medical professional for help.
The first two I dealt with the easier of the four major issues I am living with (though they might be easier to describe they are not necessarily easier to live with.)  The last post dealt with Functional Neurological Symptom Disorder and it's affect on me and the family, this post will deal with the memory and other cognitive issues that I am currently dealing with on a day to day basis.  
Let's be honest here, the memory issues are probably the ones that everyone is most curious about.  So, I will make you wait just a teeny, tiny bit longer deal with the other ones first.  Every day is exhausting for me mentally (which often translates to physical exhaustion) because everything that I once did naturally seems to take so much longer and be that much harder to acheive.  This is partly because of the memory, but I also have problems planning, thinking, concentrating, writing, even talking and listening is all really hard work for me.  
Sure for many people planning, thinking, concentration, processing, attention spans, writing, talking, listening issues are part of day to day life.  But for me in the before I used to do these things without having to think about every part of the process.  Imagine having to think about how to think every day, then add in I have to think about how to walk, how to use my left arm, how to put on a sock, or shoe, even how to dress myself.  This is exhausting (yeap I know I am saying that a LOT!) but there really isn't any other word to use.  The planning is even more frustrating for me especially when I am trying to write every day but the thoughts that are in my head feel like a huge jumble and to get them onto the page in any meaningful way is hard work.  This makes me really sad.  I understand that these posts read fairly well (I'm hoping anyway,) and they kind of have a start, middle and end what you can't see is all the screwed up pieces of paper that I have here from me writing words down and trying to organise that into something that makes sense to me.   Not only that but planning is something that we use every day without realising it, for most people this comes naturally now for me I have to write every single thing down and if I don't I honestly don't know what is going on.  
So when you then add in that I am having trouble concentrating and my attention span is that of a gnat it is easy to understand how talking and listening could also be issues.  Obviously anyone who knows me well would be shocked to know that I am doing a lot of sitting and not really saying a lot, especially in group situations or where there is background noise.  For me all of these things are just hugely frustrating and make me feel inadequate and want to hide even more, holding a conversation is hard work I need to listen carefully to follow what is going on and of course with the memory issues it is often hard to follow along because I simply have no idea what people are talking about so my attention just drifts away.  At the moment when I am in a group situation of more than really about two people I just shut down because I just can't follow conversations.  
Not only do planning, concentration etc affect social situations and also activities of daily living but for me they are one of the huge barriers to me being able to drive I quite honestly cannot process the steps and information required to drive a car in fact I am hard pressed to work out how to unlock it!  So actually driving one is just such a long way off right now!  In addition to driving, writing and all the other things I have mentioned, all of these things are affecting all the things that I would normally do to fill my days like crochet, knit, or even cooking.  These are the things I am missing most.    
Now onto the topic that I have probably had the most messages and questions about because it is really very hard for everyone to get their head around.  My memory.  If I describe a typical morning for me I wake up and I feel quite panicked inside because my head feels exactly like a blank piece of paper, or an empty space, my darling husband has to as quickly and gently as possible fill in the big gaps in my head so that I don't get a fright, I get information about the kids and how much bigger they are since the last time I think I saw them, I get told that we have dogs as cute as they are I just don't remember them, this morning I was shocked to see a beard (clearly it's been there a while but it's new to me), he reminds me about the walking stick, reminds me that we have done renovations and that he has changed jobs.  Imagine getting flooded with this information every morning and it slowly starts to fill in the emptiness in my head.  
Terrifying is a word that springs to mind, then there is actually seeing the kids, dogs and trying to get moving for the day.  Some many things feel unfamiliar in my house but clearly they are meant to be there because I am fairly confident in that my hubby is not up and building kitchens or bringing in new lounges or moving furniture in the night after I go to bed.  Then my day continues I will read my journals which really fill in the blanks of the last few months and some major events that have happened in that time relating to the last few years but they don't give me all the information.  I don't remember so many significant events that have happened in our lives, family holidays, Christmas, working, the worst part is that I don't remember things I've done both good and bad.  
I am sure that for some this might feel like a put on and that it just can't be real but it truly is real and I would honestly give anything to have my memory back.  To have no memory of things is frightening I can't defend myself against anything and equally it is sad to not remember experiences that we have had as a family and with my friends.  I am told that this is autobiographical memory loss and it is quite likely to be a protective mechanism that my brain is doing to stop me from thinking too much (at least that is what I have written down!)  Essentially our brains do have a limited space for memory a lot like a computer and we are meant to process events and then move that memory from active, working memory to long term dealt with memory for the occasional recall, it is thought that I haven't moved much of my memory into the long term memory and I have stored everything in the active working space until it could store no more.  
Try living each day with no memory of the day before, then when you factor in the planning, concentrating, organisation, and then the physical walking and movement PLUS the depression and anxiety life is just a picnic for me and the family right now.  I need constant reassurance that everything is ok and will be ok and that I am not going completely mad.  I guess most people have seen the movie 50 first dates life for me is a lot like that only I don't live the same day over and over (at least I don't think I do!)  Once I wake up and start to fill in the blanks whilst nothing feels right to me and it all feels like I am in a story or a movie and it is someone else's life, I do remember it untill I go to sleep that night, but if I don't write the events down then they just didn't happen, we are not sure if the memories are being created and I just can't recall them or if they are not being created at all on time will tell.  The reality is that TRUST is central to my life right now which is frightening and also DEPENDENCE.  
Trust is a hard thing at the best of times even when you are fully aware of everything and what I know is that in the last few years (and when I say know I really mean what I have read in my journals and what I am told during each day - because there is actually anything from the last few years that I KNOW as fact), that I have broken the trust of those who love me in various different ways.  The hard part of this is that even though I accept as fact the things I am being told as I simply have no basis to not accept them and I have in as many ways as I can and most likely every time I find out again what I have done apologise over and over, until I can have some form of daily continuity it is incredibly difficult to rebuild that trust, though I hope that in some small way I am doing that, even if I don't remember hopefully those around me affected are seeing the things I do and remember.  But for me on the other end of the trust I have to trust implicitly in every single person in my life, I have to trust that what my husband or friends or other family tell me is truth, I have to trust in the bus driver that arrives when I have to go to rehab, I have to trust in the OT or psych or physio you name it I am handing over my life completely to strangers and loved ones alike.  This experience is simply terrifying, I have no idea from day to day if the person standing at the door is going to take me where I need to go but I trust!  
Hand in hand with this comes dependence.  I have a complete dependence on everyone around me for so many things.  I rely on people telling me who they are and what is happening, it is terrible really I hate the feeling of dependence (well today I do and that is all I can base anything on!) I am much more used to being the person people depend on rather than the other way around.  In addition to being dependent on others I am dependent on my writing and journals this is really something very new to me, I have always kept everything in my head and as such have rarely kept a diary, not only have I not kept a diary so much information about everything is stored in my head and for now it is just trapped there I hope it will come back.  
Where to from here - we hope that in time that as other issues are dealt with that slowly the memories will float back in but when and if I will get all my memories back for now we just don't know.  All I can do is work through everything and trust in the process.  
How can you help - if you want to visit or you have arranged a visit with me please send me a message letting me know that you are coming and just give me a prompt as to how I know you.  Often messaging through fb is great because I can cheat and look at photos and try to link everything together.  If you show up unannouced and I am looking at you completely blankly please just say hi it's blah we know each other through blah it breaks the ice I won't remember tomorrow so please don't be embarrassed.  Though pre-planned visits really are much better.  Please remind me to write things down so that I can remember to tell my hubby especially if you give me important information.  Most importantly please just be you, chat away to me come in make yourself at home, get yourself a cuppa and sit with me in time I am hoping I will get better but what better looks like we just don't know.  
Lastly, and most importantly thank you everyone who is supporting us in this journey, every single act of support for us is so very appreciated and we quite literally are overwhelmed by the community of people we have around us supporting us along the way.  Thank you really doesn't seem adequate know that even though I don't remember it all it makes an incredible difference to our family and without each and everyone of you this journey would be so much harder.
P.S Sorry for the length of this!!!  It has taken me days to write this!  

Friday, June 12, 2015

Functional Neurological Symptom Disorder (FNSD)

Here is the third of the posts talking about some of the issues that I am currently dealing with.  Please remember these are simply my writings about my personal experience from my journals if anything in this raises concerns for you please see your dr or a medical professional for help.
The first two I dealt with the easier of the four major issues I am living with (though they might be easier to describe they are not necessarily easier to live with.)  This post will deal with Functional Neurological Symptom Disorder how that is affecting me and then I will deal with the memory and cognitive issues in another post.  
Functional Neurological Symptom Disorder is a big long name that describes a big long list of symptoms that occur due to a problem with the function of the nervous system and how the brain is sending or receiving messages.  It has also been referred to in the past as Conversion Disorder (the brain is converting the message into something that the body isn't receiving correctly) or Somatoform disorder (we have all heard the term psychosomatic before - meaning it is a disorder relating to the interaction of the brain and body.)  What we know is that with Functional Neurological Symptom Disorder there is no physical damage to the brain such as tumour, MS, stroke etc.  If we think of the brain as a computer then the brain itself is the hardware and the nervous system is the software then Functional Neurological Symptom Disorder is a problem with the software and not the hardware.  The good news with this is that for the most part symptoms of Functional Neurological Symptom Disorder are not permanent and in time with the right targeted therapy or even just time alone you will get better or back to normal (better and normal might be different to what they were in the before FNSD world though).  
What are the symptoms of Functional Neurological Symptom Disorder?  There is a huge long list of different symptoms such as hemiparesis, limb weakness, headaches, etc and if you are interested I will include a website that has a lot more information that you can read.  My particular symptoms are that I have functional left side weakness (or hemiparesis), my arm and leg are affected, they feel different in fact if I had to describe it I can actually feel them and I am extremely aware of every single movement my arm and leg make.  If you think about your limbs I know for me I am not conscious of how my right arm or leg work/move I just use them to do what I want and they do it.  But my left arm feels like it has a heavy, heavy weight sitting on it and to get it to move I have to think really hard sometimes it works and sometimes it doesn't.  I was told by my physio today that my leg movement is improving out of sight and that I am no longer dragging it as I walk, which is all good news.  
To get around I am using a walking stick so that I don't fall over though that has happened a few times and my arm even though it kind of works is incredibly weak.  A strength test that I did today with the Occupational Therapist measured my arm strength in my left arm as approx 1kg and my right as 26kgs.  Though my walking stamina on a treadmill has increased and I can now get up to 16mins which is a 10min improvment on 8 weeks ago.  I now pretty much had full range of movement with my left arm it is still a little weaker and every now and then feels numb but mostly my arm is good.  My balance and dizziness is still a huge issue so I am still using the stick and I am not good at judging distance so I seem to be forever hurting my left foot. *
This means for me that getting around is very slow and sometimes my arm/leg don't do what I think I am telling it to do  and it takes a huge amount of concentration to acheive the same task with my left side as my right side.  At the moment I am not driving, and we don't know how long that will be for.  I can't carry anything heavy in my left hand like a cup of tea and walk across a room because the concentration required to tell my leg to walk and the concentration to tell my arm to hold the cup compete!  We tried this at OT and I spilt the tea!  Showering, drying myself, drying my hair, doing pretty much anything that requires two hands is not happening unless I have figured a way to do it mainly with my right arm and using my left for support.  This has all improved greatly!  I can shower and dress and wash myself most of the time but I am still using a chair and hand held shower most of the time it is just easier.  I am cooking most of our meals and I can certainly carry a cuppa which is huge!  All of that said I don't do anything except make and carry a cuppa, when there is no-one home in case I fall over or loose my balance! *
As you can imagine this is all incredibly frustrating for me and the family.  I hate relying on other people to do things for me and I am sure that there are times that they get annoyed having to do lots of things for me!  Of course this loss of independence has a huge impact on my mental health and if I didn't already have issues there I am sure I would now coping with this!  
I am lucky I had a good dr who recognised what this was very early and was able to ensure I got the right approach to treatment.  For me that is a multi-disciplinary approach, OT, phsyio, psych, neurology, neuropsychiatrist.  I am only seeing OT, physio and psych on a weekly basis and the others as needed.  The challenge with rehab is to ensure that I have the right balance between doing enough to ensure that there is improvement and not too much that I go backwards.  
Functional Neurological Symptom Disorder is for the most part cause unknown.  The researchers think that for some people stress and past trauma can have an impact however, this is not the case for all people so why some people will get this and some people won't is really unknown.  Though for me from reading my journals I would think that stress and past trauma have played a huge part for me.  Most definitely if there was no psychological issues that were part of the cause they would certainly become part of the problem with the time it takes for diagnosis for many people.

My psychologist thinks that I have been in one way or another manifesting symptoms of FNSD for years I had a period of hysterical blindness where my eyesight couldn't be corrected with glasses to be legal to drive but it corrected itself this was after a particularly awful trauma, I had about 12mths with no voice after an incredibly stressful period in my life, I have always been a migraine/headachey person.  In all of these other instances the symptoms eventually self resolved when either my brain had processed the trauma enough to be able to cope or let go of the stress enough to move forward.  This is typically not how it works.  There is no causal link between x and y causing z.  There are often lots of contributing factors and even the immediate pressing trauma, grief, incident, stress etc could actually be another symptom of FNSD and it is in fact accepting that there is a neurological condition and treating that will aid recovery most.  Obviously if there are other issues that are pressing and need to be dealt with it is important to work on those as well but generally working on the psychological issues alone will not resolve FNSD.  

In my case it is thought that something came to a head this in turn reacted with all the other past trauma including some of my closest relationships, muddled everything up in my head and started sending out muddled signals to my arm and leg, so it was almost as though my brain was in one big constant panic attack and didn't know how to stop the cycle.  I understand that I spent significant time in hospital addressing the physical symptoms, and I was discussing with my psych today that I get this sense that there was this feeling or expectation that if I just accepted and faced up to my issues then I would be back to normal and better.  I can't be certain I really have nothing at all to base this on and I don't even know what hospital I was in or who was treating me.  So it is a strange thought to have.  She actually affirmed what I was saying and that is most definitely a common misconception about FNSD, people and often these are our treating physicians or those closest to us just want us back to "normal" or "better".  What is normal and what is better in the after of a FNSD diagnosis can be very, very different to what would have been "normal" or "better" in the before.  

The reality is for me and many like me the "event" that was the end result that appeared to be the "cause" of the FNSD but is thought to be really another symptom that also needs to be worked through. So in my case facing up to my demons helped more with my psychological recovery (which still has a long, long way to go and is ongoing) than my physical or cognitive symptom recovery from FNSD.  Either way it was and is an important thing to do and whilst it might read like I am writing in code the truth is I do not know or understand or remember, the how, what, why of the event.  I know (through my journals and sessions) that this has been resolved and everyone has moved forward.  I may never get access to that part of my brain to give me that information.  My psych tells me that all I really need to know is that it has happened and dealt with and it is time to move forward.  Time to start finding the "better" and "new normal" for me.  These could be very different from the before me and could be difficult for people around me to get used to as regardless of what the cause was I am different and I am changed as I process the things in my head.  

Most importantly, I am improving as hard as that is and as slow as the recovery may feel (though too be entirely honest I don't remember yesterday so maybe it isn't that slow at all!) I am improving.  Of course as with any recovery I have good and bad days which is to be totally expected, but hopefully there are more good days and less bad days.  Typically people tell me I look really good better than they have seen me looking in a long time so I MUST be doing better.  The truth is I know that my illness is invisible and that because it is invisible it is hard to understand.  There are no physical outward signs (except my stick for balance/dizziness) and I probably do look better because I am finally getting help for my misfiring brain.  Sometimes people can think that an invisible illness is a "fake" illness but the truth is that for most people with any type of invisible illness (could be neurological like Parkinson's or MS, Dementia, FNSD, or psychological like depression, anxiety, bipolar or something else like Crohns, Chronic Fatigue, Epilepsy, Seizures, Endometriosis or more) they are actually faking being WELL, because they are over their illness just as much as you are.  

There is a long way to go in gaining a wider understanding and acceptance of FNSD both within the medical community and with patients themselves.  Often the hardest thing of all for patients with FNSD is that they can feel incredibly alone and isolated because they have never heard of FNSD, their Drs may have a limited understanding and most importantly others have never heard of FNSD.  The single most important fact to remember about FNSD is that IT IS a neurological condition, and it has at this point no known cause, it can have a psychological component for some people but not everyone.*

Further reading can be found at

Here is a video put together by an organisation in the US FND Hope that also explains it a little bit.  
*  Edited 29/1/16 to add all the new information that has been part of my psychological recovery and more information I have learnt about FND.  

Thursday, June 11, 2015


Here is the second of the posts talking about some of the issues that I am currently dealing with.  Please remember these are simply my writings about my personal experience from my journals if anything in this raises concerns for you please see your dr or a medical professional for help.  
I've chosen to start with the easiest two of my symptoms the ones that most of you have heard of and probably already know someone living and dealing with Anxiety or Depression.   That person may be you and you are feeling alone, hopefully my sharing will let you know you are not alone and are in fact quite "normal". 
You probably know what feeling sad or down feels like, well depression for me feels nothing at all like that.  Depression for me is like this heavy weight that is sitting on every single part of my body.  Depression is the deepest, darkest hole you can imagine with every piece of dirt collapsing in on top of you suffocating you, there is no light, no joy, and at times a weight so heavy that I just want to die for it all to end and any happiness I might feel is fleeting and short lived.  
It makes me feel tired, angry, irritable, lonely (and a loneliness that you can't put into words!), sad, apathetic, overwhelmed, unhappy and guilty.  There is such a sense of isolation and darkness that I am not even aware of any light around me.  In addition to these feelings the common thoughts I have are I am useless, worthless, hopeless, that everyone would be better off without me and a failure.  All of this comes on top of physically feeling unwell, exhausted and living with constant headaches.  So all in all not a lot of fun at all and believe me if there was anyway to just wake up and be happy I would in a heartbeat this overwhelming sadness and heaviness is absolutely not a fun way to live.  
Many days I just don't care enough to care and that then makes me sad and then I worry about all the things I am not doing, can't do, that I am failing at and then the anxiety sets in and then I get sadder and so the hole gets deeper.  You get the picture the games that are being played out in my head.  That said it isn't all darkness there are fleeting moments of joy and happiness but they pass so quickly and then I am left alone and in the dark once again.  It is like a roller coaster ride that I just can't get off it takes forever to climb to the peak for a fleeting moment of happiness and all the while there is the anticipation of the plunge that you know will come into the darkness and you are so used to doing it alone that it is so hard to reach out and tell anyone.  For so many reasons for me I keep writing that I just didn't know I had this much support and why didn't I reach out sooner, I think honestly the reality is that I just couldn't see what I had around me that the darkness of the depression had taken over.  Plus it is embarassing the truth of being diagnosed with a mental illness is that it is not something people talk about so it is hard to tell people even your loved ones and closest friends.
It seems that I got so practised at telling everyone that I'm fine that people actually believed me.  The main problem was I was drowning not waving, but nobody knew.  If only I had realised just how not fine I really was.  My psychologist thinks that I stopped coping about 3-4yrs ago and that my brain moving from coping to functioning and even then only just, but enough to not listen to the warning signs and get help.
During this time of just functioning I have somehow managed to shut out whole parts of my life.  I have made bad choices in all areas of my life that I have then also shut out which then added to the pressures and stress that I was already feeling and then I dug a deeper and deeper hole.  
Depression has invaded every aspect of my life.  It has robbed me of so much and got a hold of me in a way that has completely overwhelmed me.  But there is a way out of the hole and it is at the moment grain by grain but in time we will get to shovels and truckloads until I am standing on solid ground again.  
What I understand now is that Depression is not a choice, it is an illness in the same way that asthma is an illness.  For me I am now taking medication to help with everything that is going on in my head.  However, medication is only part of the solution,  I am having regular therapy, facing up to my mistakes (which won't be easy and for a time could actually make things worse for me) and also accepting that I am not super human.  All of these things are hard but they are a necessary part of my journey to getting well.  This is coupled with huge truckloads of love and support from my family and friends all of whom I couldn't get through this without, especially in my darkest moments knowing that there are people who love me and are there for me when I feel like I just can't go on anymore and who really want me to get well regardless of what has happened means the world.  Of course, what well looks like is yet to be determined but it has to be better than the here and the now.  
How can you help?  Just be there, be you and understand that whilst I might have a smile on my face inside I could be dying.   The smile is how I have been coping for a long time now and is really for everyone else, I am learning that this is not healthy for me and it is important to speak up though I really find this hard to do.  But understand that if I say I'm fine I might be too, today could be an ok day, "I'm Fine" isn't always code for I'm drowning not waving and I really don't expect you to be a mind reader and work that out.  I am getting better at saying I'm not fine and knowing that you are there and care helps with that.  
In many ways the practical support for me with depression are similar to that of anxiety just be there for me (or my family because I am more than aware of how this is affecting them and more than anything I want to shelter them from everything), we have been blessed with an amazing community of friends and family who are providing lots of practical support which is awesome.  I simply can't say thank you enough for everything.  
Again these are reflections from my personal journey and if anything here resonates with you please seek help.  Here is a link to the Beyond Blue website and their factsheets on depression for more information

Wednesday, June 10, 2015


As promised here is the first of the posts talking about some of the issues that I am currently dealing with.  Please remember these are simply my writings about my personal experience from my journals if anything in this raises concerns for you please see your dr or a medical professional for help.  
I've chosen to start with the easiest two of my symptoms the ones that most of you have heard of and probably already know someone living and dealing with Anxiety or Depression.   That person may be you and you are feeling alone, hopefully my sharing will let you know you are not alone and are in fact quite "normal".
Anxiety for me is the most awful feeling my hands sweat, sometimes they shake, my chest tightens, I feel like I can't breathe or catch my breath, my heart feels like it is beating through my chest, sometimes I get a sick feeling in the pit of my stomach, sometimes I get pain in my chest, sometimes I get all of these things together, and finally I get an overwhelming feeling like I need to flee wherever or whatever it is that is making me feel this way and usually there is absolutely nowhere I can run to so I have to find a way to cope until the feelings pass.  The biggest problem with this is that often these feelings just don't pass quickly for me.  
It is important to mention that stress and anxious feelings are important in our everyday lives, they help us to meet deadlines or to perform under pressure and most importantly it is a biological response to danger, I am sure you have heard of the fight or flight response.  So stress can produce the right hormones in our bodies to help us in dangerous or scary situations so it is possible that you might feel some of these things from time to time but the key difference is that when that situation has passed you return to feeling normal, for me every hour of every day that I am awake (and even sometimes when I dream!) I am living in this heightened state of awareness.  The only way I can describe it is if you could imagine your very, very worst fear ever and then times it by 1000 and imagine living with that every day.  
For me the feelings come on at anytime and at the moment there is no pattern or obvious trigger.  Most things in a day can induce these feelings reading my journals, noise, sensory overload, a knock on the door, leaving the house, being out of control, going to rehab, seeing people, being a passenger in the car, there almost feels some days like there is nothing except hiding in the house that doesn't bring it on but then some days even being at home is hard.  
For me it feels crippling, I am trying every day to push through in little ways but it doesn't seem to be easing the feelings at the moment.  As you can imagine there are things that need to be done everyday and avoiding these things will only make it harder next time, plus I am part of a family who love me and want to share the exciting things that are happening in their lives with me.  However, pushing myself through the necessary means physical and mental exhaustion by the end of the day and even though I am extremely tired I am struggling to sleep.  Also, pushing myself through the necessary also means that there is very little energy left for anything else like seeing people, crowds, shops, etc.  If there is a situation that we can pre-plan for and have an exit strategy then it is a possibility but overall I am using everything I have to get through day-to-day.  
In many ways the anxiety for me is worse at the moment because of my memory issues (that I will write about in another post), to put it into context briefly though for you I have no recall of the last 3-4yrs and fuzzy recall of the last 4-5yrs so if you met me prior to 2011 I will have a good chance of knowing who you are and where you fit, between then and now it's hit and miss.  As you can imagine there are many events that have happened, things I've done (good and bad,) and people I've met that I just can't recall and that it is really hard because pretty much everyone else remembers me or the event or they way we know each other.  So as you can imagine life and thinking is pretty much hard work.  
How can you help, just be there, be you and understand that whilst I might have a smile on my face inside I could be dying.   The smile is how I have been coping for a long time now and is really for everyone else, I am learning that this is not healthy for me and it is important to speak up though I really find this hard to do.  
What does this all mean in a practical sense:  
*  that I am learning to say no, this is not easy and really doesn't come easily (except to you know special people like family lol) 
*  being at home feels like the safest place for me but I am also very aware that if I never leave the house the harder it will become
*  if you see me out and about don't assume that I am coping it seems that I have become a master at masking so I may be holding things together just when I am out only to fall apart at home
*  I am working hard to recognise/reduce my triggers but this will take time and those who know me well will know that patience is not something I am good at
* I am also trying to practise breathing techniques to help when things are feeling out of control
*  I still like to see people but for now this needs to happen one on one or no more than two and at home, and please understand if I say no it truly is me not you.  
Again these are reflections from my personal journey and if anything here resonates with you please seek help.  Here is a link to the Beyond Blue website and their factsheets on anxiety for more information 
A good video to watch to explain I am anxiety

Tuesday, June 9, 2015

It's complicated

It's been a little while since I have updated everyone.  I was reminded about the blog I started up a long time ago now and I have spent some time re-learning and writing myself some instructions on what to do with it.  I thought that rather than sharing crazy long posts on my personal fb I would put them onto my blog and I have worked through setting up a blog page on fb that I will share them on.  If you want to follow along this journey perhaps pop over there like the page and that way if there is something that touches you or your life you can share it more easily.  
I am not entirely sure why we are on this path but it is the one we as a family have found ourselves on for now.  I hope that by me sharing as much as I can (which most likely won't be all the time because it takes an incredible amount of time and effort to put things together for me), that perhaps our journey will spark conversations, or even just give some insight to what things are like when "normal" is no longer your "normal".  
Life for me is still quite complicated (actually complicated is an understatement.) I still have issues with my left side and significant issues with my memory, concentration, planning, as well as the depression and anxiety. 
I thought what I would do because I have had a few messages asking what it is like I would share in separate posts how each one of these things are affecting me and how these impact not only my daily life but also things for Andrew and the kids.  
From my daily readings of my diary and journals I simply cannot express enough thanks to all the many, many people who are helping us get through this time.  We are incredibly blessed with lots of love and support both emotionally (through messages, phone calls, cards, the little things that people do to let us know we are not alone.  But also the physical support and this has been invaluable especially the meals, lifts for me and the kids, the assistance getting the kids to school, the visits (tough as they may be for me) and everything else that I may have forgotten.  We simply could not have come this far without all of that.  Thank you doesn't to me feel enough but they are the only words that I can find right now.  
Life for Andrew and the kids is ticking over as normally as possible, well this is what has become our new normal.  They go to school and work and activities and I go to rehab.  Rehab from my journal is hard work and according to my therapists, Drew and my parents I am improving at least physically, this is hard for me to judge given I don't remember yesterday so I am not sure how far I have actually come, the most important thing is that there is improvement.  
That is really pretty much it.  I will do up posts about each symptom as to put them all in this would be too hard for me to organise things into a meaningful structure and it would be far too long for anyone to read.  Please know that I read all the replies and messages I get from you all, I often don't answer because by the time I have organised my thoughts into something meaningful the moment is lost.  That is why this is good I can write my thoughts down and play with them until they make some sort of sense.  
Thank you all again especially Andrew, the kids, my parents, our wider families and of course our incredible friends we simply couldn't do this without you.