Idle Hands

If idle hands do the devils work, idle minds must be horrendous.  My point is that whenever I have been sick, or in hospital with not much to do the mind can wander.  And when you are already not at your best that can be terrible.  You can start to dwell on the negative and before you know it you can enter a spiral of depression and the way out is steep and treacherous.  Trust me.  I know, I've been there.

So why is this an issue for me right now?  Well if you have been reading my previous blogs you would know that I'm about to go to Chicago for anywhere up to three months for a stem cell transplant.  My sole reason for going is the stem cell transplant and in between all the tests, appointments, treatments, scans etc, I'm going to have plenty of down time.  Time for the mind to wander.  Time for the mind to play tricks.  Time for the mind to breed negativity and depression.

So how can I combat this?  Well, some people may think that I am not taking this whole procedure seriously, but I am also looking at it as an opportunity to do some stuff.  What that stuff is I don't quite know yet, but my theory is that if I can fill my head with positive, there will be no room for negative.

The first thing is, I have never been to Chicago, but I'm sure that there is plenty to do and see there, so in the gaps I hope to become a real tourist and do some sight seeing.  Second, I have friends that live in the States, and although limited and small there may be an opportunity to travel.

I understand that some people may thin that I have my priorities all mixed up.  But that is not the case.  I have to look after my mental health as well as my physical health.  Keeping my mind busy and active will help me stay positive throughout the ordeal.  Until next time, stay well:)

Movember's International Man of the Year

You have to admire the effort!

Depression - A personal note

Looking back through my blog I noticed I had left a couple of topics incomplete.  One of which is depression.  You may have thought I finished the topic, but I wanted to do one more thing and give you a personal reflection.

I have found this topic hugely confronting.  From the outside, I may look like a fairly open person, but emotionally I have up until recently been a closed book.  But I made myself a promise that when I wrote this I would be brutally honest with the way I felt.

I took me over a year to suck up the courage to write on the topic of depression, because I knew that if I was going to keep my promise to myself it would be akin to me opening Pandoras' Box.  And although it might not look like much to others I have done something that I never thought I'd do, or be able to do.

But I have, and although it has been difficult (really difficult), it has been an absolutely worth it.  Shakesandstones has given me an outlet to release some of my emotions and potentially help others in the process.  It has allowed my to have purpose and fulfilment, and I have really enjoyed writing it.

Well, I hope you have enjoyed reading.  I will continue to write so until then, stay well:)

If you know me, you're all right.

This is funny.  The only problem is most of my friends are completely mad, so maybe it should say "If your three closest friends are mad, then you're probably OK."  Which means I have nothing to worry about!  Stay well:)

Movember Movember

Available for purchase at http://au.movember.com/mospace/2596030

Movember Apology

Dear Tyson,

I must apologise, three times I have plugged your Movember page on my blog and so far I have not been able to drive one cent to your page!  Maybe I need to stop referring to you as sleazy pool guy, dirty porn star or gas station robber as these accusations are profoundly untrue (well inaccurate anyway.)

So one last crack!  Come on peeps, roll up and donate to Tyson, all round good bloke and legend in his own mind.  It's for two great causes, Beyond Blue and the Prostate Cancer Foundation, so empty your pockets and open your wallets and feel good about yourself because today you have done something special.  You have made a difference.  Thank you.

Dirty Flynn

Movember Update 2

Me thinks someone might be cheating?  Tyyyyyyyyysonnnnnnnnn!!!!!

Movember update

Oh my,  I think old Dirty Flynn(aka. Tyson aaka. T Bagger) has multi-personality disorder.  He hhas gone from service station robber to sleazy porn star in less than a week!

Dirty Flynn

Depression funny

I found this cartoon funny because it would have been the sort of thing I used to do.  The only problem with this is the longer you leave it, the bigger the issue becomes and the greater the stress.  Enjoy and stay well:)

Depression Control

Depression can reoccur.  Does that worry me?  Absolutely.  But I have been given the tools to identify if things are going backwards for me, and what to do if they are. Thankfully, things have not headed in that direction yet, and I guess the real test will come if and when they do.

So how do I identify if my depression is returning.  When I first started getting symptoms many years ago I had no idea what was happening.  My biggest weapon in identifying a relapse is awareness.  I know what it looks like and I know what it feels like, but I also have to be wary of false indications.

In my post titled Finished Up, I touched on this, as after my IVIg treatment I felt awful, but this did pass.  Sometimes you're just going to have a bad day.  What needs to be done is differentiating between a bad day and a relapse.  For me the sighs are:-

1. Having negative emotions (anger, anxiety, sadness) for three days or more.
2. Waking up in a bad mood.
3. Withdrawing myself from social situations.
4. Procrastinating about things I have to do.
5. Not doing things I would normally want to do.

If any of these things are occurring, I have to stop and ask why.  If the reason is isolated I can deal with that and move on.  If it is bigger I can utilise the following tools to help:-

1. Think positive.  What we think effects the way we feel, and the way we feel effects the way we think.  I is very hard to change are emotional state, but we can change the way we think.  This allows us to reverse the trend and put us back in the right direction.
2. Make sure that any issues both now and in the near future are dealt with now.  Waiting, will only allow them to fester and breed negativity.
3. Remind myself of my achievements.  This allows me to feel useful.  This blog for example, allows me to feel productive and useful.
4. Go and see my psychologist.  If I can't figure it out by myself, I know I can always go and get some help.

Well that almost wraps it up now for me and depression.  There will be a couple more posts on the subject, but I will leave the exact nature of those a mystery.  Until next time, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Depression Gone

It was a long road, I think in all I was suffering from depression for about eight to ten years, five of those I was just trying to get myself better, something I feel I have only just achieved.  In brief, I did it by following the following steps:

1. Identifying the problem.  For so long I didn't realise I had a problem.  Once it had been identified and diagnosed the depression felt more tangible and solvable.
2. Get help.  In the fine words of Bono, "Sometimes you can't make it on your own." That is so true for people suffering depression.  It's OK to ask for help.  Everyone needs help at some point in their lives.
3. Anti-depressants.  They are not the answer but they do help and assist you in getting to the next step.
4. Validate your feelings.  It's OK to feel the way you feel.  Once you have acknowledged this and validated it you can move on to dealing with it.
5. Rectify past mistakes.  For me certain things I did, or more accurately did not do, were hanging over me like the sword of Damocles.  I was never going to finally conquer my depression until I had sorted them out.

I guess the question is "Am I cured?"  That is an extremely difficult question that can't be answered with a simple yes or no.  Depression is not a switch with an on off button.  It is measured on multiple scales, which makes it extremely hard to evaluate.  So, am I cured?  I am a great deal better than what I was, and if you were after a medical term I think that they would say I was in remission.

Which leads to another question.  Could I relapse?  The answer to this one is much more simple. Yes, absolutely, and it worries me.  Looking back it is somewhere I don't ever want to be again.  But it could happen.  It is not like one day I will just take a wrong turn, I would just simply be there and again I would have this horrendous mountain to climb.  

So what can I do about it?  Well luckily there is a point six.  Tools for identifying a relapse and rectifying it early.  But that is the post for next time.  Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Shakes, Stones and Shady Mo's

A friend of mine is doing Movember.  To tell you the truth it makes me feel kind of guilty because it is two brilliant causes that I really believe in and I'm not doing it.  See the links Below:-

Prostate Cancer Foundation of Australia

and

Beyond Blue

So I think apart from growing my own mo the best thing I can do is promote old Dirty Flynn (aka. Tyson Sheean).  Please don't let the fact he looks like he just knocked over a gas station dissuade you from donating, he is really a nice guy.

His page is linked below:-

Dirty Flynn

If anyone else wants to show off there movember page, just put the link in a comment for this post or send me a message and I'll do it for you.  Stay well:)

Depression Continued.

During my depression I made a lot of mistakes.  It was not so much with the things I did, but with what I failed to do.  In a way, dealing with the medical problems was easier.  I had little control over the problems that I was confronted with medically, but the other problems I had created by my failure to do what was necessary.

Since 2002 I had been running my own business.  With that comes certain responsibilities.  Responsibilities that I had to fulfil.  To run a successful business you have to work hard and be proactive. To run a business there is a bare minimum that you have to do.  I was doing less than that.

It could have been viewed as me being greedy or selfish.  The truth was that in reality nobody was hurting more than me.  If you told me in 2002 that I would be in this situation, I would have laughed at you.  But in that moment where work had to be done and decisions had to be made, I would pick up the edge of the carpet, shovel everything under there, walk outside and bury my head in the sand.  For five minutes I would feel better.  Inside my head my problems would disappear, but hen they returned they would be worse and harder to deal with.

It was not a good space to be in.  I felt tremendous amounts of anxiety and guilt, and I had felt like I had let a lot of people down.  But it came time to deal with it all.  I realised at the time that I could not deal with my medical problems and run a business.  My medical problems weren't going to step aside, so I had to take a leave of absence from my business.

I order to do that I had to let a couple of people in on the problems I had created.  This was extremely hard.  I was embarrassed and guilty and the people I confided in were really great.  I couldn't have blamed them if slowly but surely they left, but they didn't.  Instead they helped me deal with it.  I was really surprised, but also extremely grateful.

As it stands now, I have a very solid business.  The problems I faced although tough have been dealt with, and although I am still not involved with the business on an operational level, I am still very proud.  I started it, I created it, I moulded it into the company it is today, and although it was others who took it that final step, I set the foundation.  I am also no longer guilty about where we are positioned.  We are strong, healthy and moving forward.

Next time I will talk about where I am at now and what tools I have to stop me falling backwards.  Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Depression Smack Down!

When I last posted to you, I had just felt like I had really made some headway tackling my depression.  I had taken myself to a point where things actually started to feel possible.  I had issues that needed addressing, and now I was in a space where that was possible.  If I had tried to skip straight to this point I would have failed and probably ended up in a worse spot.

Every step I made I did in consultation with my psychologist.  We discussed each step, what I needed to do, how I was going to do it, when I was going to do it by, what my expectations were, and most importantly, what I would do and feel if it didn't go as planned.

The first things I needed to address were my medical issues.  Be proactive not reactive.  I had three major issues that I needed to counter. Kidney stones, CIDP and tremor.  In terms of my battle with cystinuria and kidney stones I had been losing the battle for a long time.  Throughout my 20's I hadn't really been very good at looking for a medical solution.  If I wasn't symptomatic, I would pretend I didn't have a problem and carry on living my life normally.  If I was symptomatic I would get my stones dealt with surgically.

Truth be know, in my late teens and early 20's this actually worked quite well.  When I was not symptomatic I could go about my business as a regular uni student, and when I was symptomatic I had the time to go and have surgery and my young fit and healthy body would recover well and quickly.

However, when I got older, time was more precious and the surgery took more of a toll on me until I finally had my mega hospital stay in 2006.  Something had to change.  I organised to see a different nephrologist, who I liked and respected a whole lot more, and instructions I was much more likely to follow.  I also went and got hypnotised to help me drink more water.

With a metabolic disorder like cystinuria, you are never going to get rid of the stones completely, but I went 3 years after then without one stone!  Something I hadn't done since my first stone in 1994.  Next, I set my sights on CIDP.

I was extremely focused on getting better, but I had tried nearly every known treatment there was already, so where to from here?  My answer was to hit the disease with multiple treatments all at the same time.  I had in the past been treated by IVIG, plasmapherisis and mycophenalate, but never all at the same time.  So that is where we headed.  

Unfortunately, that didn't work, and in the past it would have wrecked me, but with my counselling I had prepared myself for that eventuality.  I was disappointed, but I could carry on.  But there is hope, as I have been researching the possibility of an autologous stem cell transplant.  But that is another story for another time.

Lastly, I had to combat my tremor, and since I was hitting it hard, it was time for the deep brain stimulation surgery.  There was an element of fear, but I realised that it was something I had to do.  I was done with my diseases dictating my life, I was in charge and I was going to have the surgery.  I have blogged about this surgery extensively, but if you haven't read it before, it went great.  In contrast to the CIDP, where I didn't let the bad news set me back, I certainly let the good news from this surgery carry me forward.  For the first time in a long time I had experienced the joy that came with success and triumph.  Positive emotions rock!


If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Next time, I will talk about all the other issue that I had to confront and face as part of my depression recovery.  Until then, stay well:)

Finished Up

It's ironic that my treatment post comes at the same time I am blogging about depression. Why? I hear you say. Well now my treatment is over I can safely say I feel like crap, and my symptoms are depression like. All I want to do is go to bed, shut off the world and sleep. Everyone can just go away and leave me alone. Well, bring me chocolate and then leave me alone.

The question is should I be worried? And the answer quite simply is no. During my therapy I learnt skills that allow me to identify whether I am slipping back, or whether I am just having a bad day. This is the latter. I can tell for two reasons. First, I have dragged my sorry arse out of bed long enough to write this post, and second and more importantly, I feel like this every month, which would indicate to me that it is temporary and will pass.

If I still feel like this in three days, I will know I have a problem. Until next time, stay well:)

I'm Back!

I was going to call this post 'Back to Normal'.  But what is normal?  For a while my normal was feeling depressed and all the baggage that came with that, so I've just gone with 'I'm back!'  Back from that nasty place from which I don't ever want to return.  Also in terms of our emotional constant, our normal is forever changing.  My normal from ten years ago (the last time I could be sure I wasn't suffering from depression) is different today.  So I'll simply say I'm Back! Back experiencing positive emotions, back feeling useful and productive.

But the question remains how did I get here?  In my post titled "Not so Silent, Not so Deadly", I commented on how I had made baby steps to solve my problem.  But they weren't really baby steps as much as one big step.  And that was creating a foundation for myself to tackle my depression.  I had talked to my doctors and was receiving professional help.  I was on anti-depressants which although weren't the answer, stopped me from reaching the punishing lows I had once experienced, and I had made mistakes which allowed me to see which direction not to go in.

So, where to from here?  I realised that I still needed help, so it was back to the GP.  This time he referred me to a different psychologist, but I realised that I had to make the change.  I had to be completely honest with my new psychologist, and not leave anything out.  That was a really tough thing to do.  I have always found it hard to open up to even the people closest to me, let alone a complete stranger, so I kicked off my first consult by letting her know this little conundrum I faced.  As insignificant as that seems, I had started to let my guard down, which lead to open honesty and a path to correcting my problem.

That first consult also marked a huge point in my treatment.  We talked about how I felt about all my medical problems.  I felt ripped off, like I'd been robbed, and inside I was upset and angry.  I had never shared this with anyone because I didn't want to be branded a whinger, or burden my problems with people who clearly would prioritise their own issues and would not want to hear mine.

So there I was, laying it all out on the table.  For me it was not the talking about it that really helped.  It was the unexpected response I got.  I was expecting a response like "Suck it up! Its the lot you were given you just have to deal with it." Or, "It's not so bad, think about all the people in the world worse off than you."

Instead, what I got was complete validation of how I felt.  Total and unconditional validation.  For the first time I felt justified in the way I felt and all of a sudden it didn't feel so bad anymore.  Instead I felt strangely calm.  The relief was the first real positive emotion I had felt in a long time.  It proved to me that I could get back.  I felt like I did not just have to fight the fight, but I wanted to.  What is more, I wanted to win.

Next time, I will talk about the battles I had to fight and how it all unravelled.  It was still a long road, but personally, a rich and fulfilling journey.  Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start.  There website is:-

www.beyondblue.org.au

Not so Silent, not so Deadly.

In 2006, I finally had an unofficial diagnosis from my neurologist, and she referred me to a psychiatrist for an official diagnosis and treatment.  Realistically my recovery started then.  Just knowing that it wasn't normal to feel this way, and that I wasn't alone, and that there were treatments available.  It was a really important step.  It got me off rock bottom and the strength to go a little bit further.

However, I then stagnated for a bit.  I went and saw the psychiatrist, and I have to say he wasn't much help to me.  His appointments were only fifteen minutes long, and his initial diagnosis came from a questionnaire I filled more than the actual consultation.  After that his only recommendation was anti-depressants.  I resisted the treatment partly because I didn't like him and also because I felt (and wrongly so) that the only people on these drugs were psycho cat ladies and suicidal teenagers.

Eventually I relented though and lucky thing too as the anti-depressants were an integral part of my recovery.  But the drugs were by no means a cure.  They stopped me from feeling the dark, dark lows, but they didn't make me feel good.  I was still lethargic and procrastinated a lot, and I certainly wasn't looking forward to anything, no matter how much fun it was.

Realising I wasn't going anywhere I decided to talk with my GP.  From here, he took over my treatment from a medication point of view, and referred me to a psychologist who would treat me therapeutically.  This was a positive step for me as I was starting to take charge of my own treatment, but I still had the line share of the work to do.

In hindsight I don't think I was ready to see a psychologist, but I needed to do it anyway.  I think I needed time to get used to talking to someone about me, and not just the good parts, but everything.  It was very confronting, and as a result I steered the conversation in areas I didn't mind talking about and ended just telling him what I thought he wanted to hear.  Looking back it seems like a colossal waste of time, but realistically, it was a very important step.

Eventually I stopped seeing him and I went for a follow up consultation with my GP. After that, things really started to get interesting and better, and although I hate to keep you all in suspense that story is for my next post.  Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start for help.  There website is:-

www.beyondblue.org.au

My Symptoms of Depression

There are many symptoms of depression.  As is the case with many diseases, no two people have quite the same set of symptoms.  But these are the ones I felt as I continued down the track.

One of the first symptoms I felt was anger, but it was very closeted.  For example, driving to and from work I would get really angry with other drivers, and I would shout and yell at them.  As long as they could not see or hear me  I didn't mind.

I became quite withdrawn.  Unless I had to do something or go somewhere I would stay at home, and I would actively minimise my calendar so I had less to do.  However, I actively encouraged my wife and kids to go out so I could spend time by myself.

I would get frustrated by anything.  The tremor didn't help.  I would get so annoyed if I did something trivial like mess up tying my shoe laces.  I was not the fact that these things were harder with tremor and CIDP, but because I let them get to me.

Procrastination and avoidance.  If I had something to do I would put it off for as long as possible, and if I could manage it not do it at all.  Sometimes I would leave something so long, eventually someone else would do it which would be exactly what I wanted.  However, instead of thanking them, I would have a go at them stating I was going to do that!  Avoiding certain issues nearly got me into a whole world of trouble.  This trouble would only serve to make things worse for me, as they say, a spiral of depression.

During this period I also felt emotionally numb, but only when it came to positive emotions.  I remember a time about three years ago, I took the family to the UK for a family wedding and a holiday.  And what did I think and feel.  All I thought about was the effort and hassle of plane travel and dealing with tired and cranky kids.  As a result I felt tired and cranky too, not excited, happy and enthusiastic like I should have been.

Because of all of the above there is an overriding sense of guilt.  I was not the person I expected myself to be and I also felt that I had let everyone down.  Coupled with the fact that I wouldn't let anyone else in meant I had to shoulder all of this by myself.

I still feel like these problems still surface from time to time.  The important thing is now I have the skills to identify them and the tools to deal with them.  But that is another post for another time.  Until then, stay well:)


If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start for help.  There website is:-

www.beyondblue.org.au

Silent but Deadly

No, this is not a crass attempt at a fart joke.  It is something really serious.  Something that I have battled with for many years and approximately one in ten adults suffer from, many without knowing.  It is depression.  It has many causes, many manifestations, it hides inside us like a thief in the night, and if left unchecked can have fatal consequences.

As with many of my subjects, my experiences with this are way too big to cover in one post, so stay tuned, it will take a while to cover it all.  I will start with my history with the disease.

I don't know when I officially started to suffer.  It was not like my first kidney stone, which was marked down as the 30th of April 1994 at approximately 11.00am with excruciating pain and a trip to emergency.  It was suddenly just there.

I didn't actually know about it until late 2006 when I had an appointment with my neurologist and she informed me that I might be suffering from depression.  In hindsight the evidence was astoundingly obvious.  But when you are right in the centre of it you can't see past the end of your nose.

I'm sure that I was suffering in May 2006 because during my huge surgery I convinced myself that it was never going to get better and I would spend the rest of my life suffering until I finally died.  I did have suicidal thoughts, my thought process was that if I was going to suffer for ever, why not end it now?  I'm so glad I didn't.

Truth be known, 2006 was simply my lowest point.  I had been sinking for a while, I just didn't know it.  I had this zombie like way of just making it through the day until I could finally retire to bed where I would want to stay for ever.

I think that looking back it was all the bad news I kept getting medically that started it.  All the bad news took up so much of my energy that I began to neglect all the other areas of my life.  Slowly but surely, they then added to the problem.  Before I knew it, it was way more than I could handle.  I guess that is why it is called a spiral of depression.

Reading back through this post I have to admit it does sound pretty depressing, but this is just the start of my story.  It does end well.  Next time, I will talk about the symptoms that I experienced with my depression and then I will talk about my treatment regime. Until then, stay well:)

If you think you may be suffering from depression, go and see your GP.  They will be able to assess you and point you in the right direction to get help.  If you don't feel ready to see someone yet, type "depression help" into google and that will give you a list of resources you can use for help.  In Australia, Beyond Blue is a great place to start for help.  There website is:-

www.beyondblue.org.au

My story

Below is my story (medically) so far. I wrote it for the WEMOVE website, so bear in mind that it is aimed at people with movement disorders, but I think it is an entertaining and accurate account of where I have been. It is a little longer than normal, but it is a good read;)

At the young age of just 18 I must have angered the gods. I was young, had just finished school and started university. I was naive, full of dreams and my aspirations for the future were limitless. In short I was ten foot tall and bullet proof. Then I made a horrible mistake. I said these ever-fateful words to a close family friend when he showed concern about me. "I am 18 years old, I am in perfect health. I exercise regularly and eat well. What could possibly go wrong?" Well, the gods didn't like it so one week later I had my first (of many) trips to the hospital.

I hear you ask, “Why did you need to go to hospital?” Well, it actually has nothing to do with a movement disorder, but I will get to that. I had a kidney stone. The first of three I had that year. I was diagnosed with a condition known as cystinuria, which means I have to battle kidney stones regularly. Sometimes I won, mostly I lost.

In the year 2000 things got worse when I was diagnosed with a condition known as Chronic Inflammatory Demyelinating Polyneuropathy. Wow, try saying that ten times in a row quickly. I will simply refer to it as CIDP.  It was a very stressful time.  It took an eternity to diagnose, and once diagnosed nobody knew what caused it although I have a few theories.

The kidney stones were still a big problem for me, and on top of that I now had CIDP a peripheral nerve disorder which left me with weakness and slowness in my arms and legs. At the time I was trying to lead a normal life, I was not accepting of my conditions and as a result I was bitter and resentful of the ailments I had been given.

Two years later it would get even worse when I was diagnosed with essential tremor (ET). Truth be known I had actually had the tremor for since I was about 15, but it had never really bothered me. I was always able to do the things I wanted to with the minimum of fuss, but that was now changing. I found it difficult to eat, drink and write. I felt this and the CIDP the worst because it was in your face 24/7. It could not be ignored, no matter how hard I tried.

Although other things in my life were going OK, medically, I was about to embark on five years of hell. I tried a variety of treatments for CIDP and ET with limited or no success. In 2006 I had complications from kidney surgery. I was laid up in hospital for 3 weeks and over three months I had seven operations. It was the worst time of my life, but also it was turning point for me.

When it was all over I started seeing a psychologist who diagnosed me with depression, probably caused by all I had been through. I realized that I could no longer refuse to accept my conditions, and instead I decided to take charge. I learnt about the conditions and treatment options and where applicable I changed doctors or even found some new ones. For example I now consult with two neurologists and two urologists, not one. I also changed my nephrologist (Kidney specialist) completely.

I also took time to work on my mental health and let myself know that what I had really did suck and it wasn’t fair. The validation of that point has really been a godsend for me. Now, I no longer live in denial about it all. I am not cured of my problems, but now I am accepting of my limitations and I am much more in control of my conditions. Recently I just had DBS to help with the tremor which has been great, but I know there is still a long way to go. I have blogged about my experiences as well. They are at shakesandstones.blogspot.com. Thank you all for taking the time to read, take care and stay wellJ