Could it be Lyme Disease?

As many of you know, our son has battled illness and some shocking symptoms for the last couple of years.  At first they were certain that he had MS.  Tests showed negative and none of the many doctors he saw had any answers.  He spent time researching his symptoms and also had people suggest to him that he might have Lyme Disease.  After finally getting in to see one of the very few doctors in Perth who treat Lyme patients, he received a clinical diagnosis.  This was then confirmed (after a negative result from testing in Australia) by sending blood overseas to Germany.  He has started treatment and is improving.  He still has his ups and downs but is soldiering on (the side effects of treatment can be horrendous).  He has his own blog and if you are interested, you can find it here.

Lyme disease is usually caused by a tick bite carrying bacteria/s.  More information is available here.

Can you believe my astonishment when at my last appointment, my Pdoc said he wanted to test me for Lyme Disease?  I told him that our son had been diagnosed earlier this year.  I was gobsmacked!

I had a simple blood test done and the result has come back negative.  Apparently this is not surprising as the testing in Australia is very inadequate.

So, I have an appointment at the end of the month to see an LLMD (Lyme Literate Medical Doctor).  I am quite anxious about this as I know that you can get way worse before you get better.  On the other hand, it may explain a lot.  My symptoms did initially start after a family holiday in the USA.  My Doctor also initially thought I had MS also.  Who knows?

So for now I am just waiting.  I will see what this new Doctor has to say and take it from there.

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Let’s Get Up To Date

 

Well I suppose the best place to start is with my current diagnosis:

Major Agitated Depression

Generalised Anxiety Disorder (bordering on Agoraphobia)

Hashimoto’s Thyroid Disease

Meningioma (benign brain tumour)

 

My worst symptom at the moment is that I am always feeling off-balance, dizzy, have leg muscle weakness and I constantly have jerking (mostly affecting my head and shoulders).   My speech is also affected and I stutter a lot and sometimes I simply cannot think of the word I want to say.  This restricts me so much as I cant get up and walk around doing things without feeling like I am going to fall over.  I have to concentrate so hard to walk and talk.

Like I said in a previous post, I am receiving excellent medical care.  I cannot thank my Psychiatrist enough for his patience and absolute professionalism, leaving no stone unturned.  The back-up support offered by my long standing GP is one of friendship, support and encouragement thrown in with the occasional dose of reassurance (when I see him on a bad day).  My new community nurse is absolutely wonderful.  He is challenging me (supporting me in the process) and is just one of those people that would be very hard not to like (even though he is a Dockers supporter!).

There are a couple of obstacles that I need to overcome, I believe, until I can really see myself making leaps and bounds on that good old road to recovery.  Please keep in mind that Agitated Depression and GAD are very difficult to treat.  I am therefore on quite a bit of medication that make me ‘zonked’, especially of a night time.

Which leads to my first obstacle. Regaining my balance and stopping the jerking.  I am sure that if I can overcome this, I would be dealing so much better with life.  My Pdoc is of the opinion that this is caused by a bad reaction to my anti-depressant and we are working slowly to reduce my dose.  I really hope this works.  But this will take time.

The next obstacle is that I am sleeping until about 10 am every morning.  Sometimes I wake a little earlier, but no matter what time I take my night meds or get to sleep, I don’t seem to wake any earlier.  It then takes an hour or two until I feel ‘awake’.  I have tried setting my alarm to wake earlier, but I either sleep through it or turn it off and go back to sleep. I also have days where I feel thoroughly exhausted.  Very frustrating!

On top of everything else I have the depression and anxiety, but these are improving over time and my moods seem to be more stable lately.  I usually get very down on the days that my jerking is very bad.  These are the days that I spiral downwards into my own private pity party.

I do have good days also 🙂  Today started off poorly, but I pushed through and managed to do housework and ironing.  I know that doesn’t sound like a big achievement to many, but to me it is wonderful!  I also managed to go shopping with hubby this week and went off on my own into a couple of shops.  I love these days!

So, if I have been a distant friend of late, please understand that the nature of this beast leaves me withdrawn.  Most days are an effort to get up and about and do a few little jobs to help out around the house.  But this will all change when I am well again. I promise!

 

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A Little Ray of Sunshine

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It has always been my dream that when I retired and had the time to properly care for a dog, I wanted a little white lap dog.  Hubby had always said “no”, as it would be too much responsibility if we wanted to go away etc.  Deep down, he was fearful of loving and losing.  He had lost his last childhood dog under tragic circumstances and was using all the excuses in the book to put the idea out of my head.

When I left hospital, the nurses and other medical professionals had asked whether or not I had a dog. My answer was always the same.  A sad “no, but we have a psycho cat!”.  And then I would tell them about my dream of one day….  They had thought that it would benefit my recovery to have a dog to look after.  They said a dog could bring so much happiness to my life. The nurses were trying their best to convince my hubby.

Monty (our cat) is not affectionate and really does his own thing.  We purchased him from the cat haven as a grown cat and fear that he had had a traumatic beginning.  At first he almost seemed feral, but he has adapted better and now snuggles on my feet when I am in bed, but he still doesn’t like a lot of touching etc.  Even tho we call him a psycho cat, we love him dearly and he is now getting on in years.

June 16th, 2013 – My dream comes true!

It was a Sunday afternoon and the phone rang.  Hubby answered it and said he had to duck out for 20 minutes.  He wouldn’t tell me where.  I can tell you it was to our local pet shop to meet my son and his girlfriend to look at a puppy for me!  They had been planning this for two months since my discharge, but hadn’t found a suitable pup.  Hubby returned home and said that I had to wait on the lounge for my son and his girlfriend to get home and that they had a surprise for me.  I jokingly said “have you got me a puppy?”…..

Yes they did 🙂  With my eyes closed, they put a 1.7kg furball into my hands.  I couldn’t believe it!! I sobbed with joy.  She is so small and adorable.  I immediately said I was calling her Sunshine, Sunny for short as she would bring sunshine into my days.

Sunny is a toy Papillon/Maltese cross and was born 2/4/13, so she is still very young.  At first, I found it very difficult to have this added responsibility, I can’t deny that.  I had messes to clean up and she needed constant care.  I felt that I was neglecting her if I left her in her room, so that I could take a break.  But that is where the family has really picked up the slack and helped out.  They get up to her in the morning while I am still sleeping, take her for walks and we all pitch in with her training and play time.

She has brought so many happy times to our family already.  She keeps me company during the day.  Her antics make me laugh and I love her to bits.  She claims anything left lying around the house (jocks, socks, shoes etc) and puts them in her bed.  She has claimed a portion of our back garden as her own and digs and buries her hide-bones and toys and then digs them up again.  She knows how to sit, shake and most times responds to the come and stay commands, just depends if she gets distracted or not.

Gary absolutely adores her! *phew*  He gets her ‘wound up’ and they chase each other and I laugh hysterically.  Her little legs go sliding over the hard floors and she slides across the floor.  Monty, although still wary has gotten over the initial shock and has accepted her also.

Every night, she snuggles with me on my bed and we have quiet time together.

I call her my little ‘healing’ dog xoxo

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Homeward Bound

It’s amazing how much ‘junk’ one can accumulate over a period of 3 1/2 months!  But the car was loaded and I was on my way home…

As happy as I was to be home and also for my family to finally have me home, we knew it was going to take some adjusting for me to settle back in.  There had been major changes in the household since I had been gone.  My son’s girlfriend had moved in and I was anxious as to whether or not she would and could accept me or even understand what I was going through.  I needn’t have worried as she is so loving, compassionate, understanding and non-judgmental.  I know that she has brought love and companionship to my son, but she has also brought the same to me.

It took a good two weeks for me to settle in.  Spending days alone in the house, having to prepare my own breakfast and lunch, trying to fill my days with distractions to keep my anxiety at bay….  I was really struggling.

I have promised myself that no matter what, I get up every day and shower and do at least two jobs around the house.  These are usually just tidying the kitchen/family room and running a broom over the floors.  I find on some days I can do more and may manage to get the washing done.  The amount I can do totally depends on how dizzy, off-balance or jerking I am.  Unfortunately, some days I can only manage to shower.  These are the days that I am so exhausted, my muscles are so weak that my legs are like jelly and the only respite I can get is to spend time in bed.  I hate this 😥

I have continued to see my Pdoc weekly and have had adjustments in medications in an effort to help.  He tells me that my recovery will take a long time.  I also see my GP regularly and he sets me small goals and I try with all my heart to achieve them.  Sometimes I am successful.  I had a community nurse who was very unreliable and have recently started with a new one, who so far seems wonderful. I see a chiro and physio weekly also as the muscle tension from the jerking is painful.

My life since returning home has been up and down.  I have had good periods where I have managed to spring clean the formal lounge and dining rooms (and finally take down the Christmas tree).  I have been able to go to the shops with hubby and keep all of my appointments.  I have even driven my car on a handful of occasions.  🙂

Unfortunately, mostly my days have been a struggle.  I am on some pretty heavy meds and I find my sleeping pattern is not so great.  I normally don’t wake until 9-10 am and it takes me an hour or so to ‘get it together’.  I hate showering as I am so unstable that I have to hold on to the shower head or support myself on the walls.  I cry anxiously at the thought of even putting myself through this some days.   I hate the feeling of water on my head!  I spend my mornings in bed on my laptop, staying connected with the outside world via facebook and emails.  I then try to get up and shower and tidy up if I can.  As I cant drive at the moment, all of my appointments are booked for the afternoons so that hubby can take me.  He encourages me at every opportunity and reassures me that I can and will get better.  But the little demon in the back of my head is always worrying or catastrophising in an effort to hold me back.

My thyroid is still out of control and I now see a new Dr for treatment.  She has introduced a new thyroid med to my regime and I am not really noticing any benefits yet.  It is supposed to help with energy and depression. She also has me on HRT in an effort to help.

I am receiving excellent medical care – why can’t I get better?

I have so much support from loved ones and friends.  But I have withdrawn and avoid connecting with most as I know how much they want to hear that I am progressing and even feeling well again.  I find it overwhelming to say how poorly I am doing and how unwell I am.  I feel I am letting everyone down.  It is better to avoid these discussions as they distress me too much and that in turn distresses the people who care for me.  But lately I have opened up more to the special people in my life who phone, email and text me.  I know they only want for me to be well and are not going to stop supporting me.  In some ways this has been the catalyst for this blog.  I can let it all out and no-one can hear my broken voice and crying.

The thing I find difficult to accept is that when I am having a good day, usually the following day is not so great.  I know, two steps forward and one step back. But I will never give up the fight to keep moving forward….

 

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Unhappy New Year

What a way to see in the New Year!  This was not the way I had hoped to start 2013….

But I knew they could keep me safe.  I needed reassurance and answers.

Looking back and laughing ironically now, I remember quite clearly telling my Pdoc that he had until Friday to sort me out as I had a wedding I had to attend on January 5th.  I was given leave to attend the wedding, but by 10:00pm, my mind and body were exhausted and I felt terrible for leaving early.

Little did I know that this was going to be anything but a short stay.  In fact, my discharge date was April 12th!  Yes, 3 1/2 months in a single bed, away from my family, having my life controlled by doctors, nurses, regulations, group therapies, schedules and let’s not mention the food!  And in all this time, my darling hubby came every afternoon and stayed for dinner – he only ever missed 4 days!  He would not give up on me, even though at times I could tell how painful and frustrating it was for him. Oh God, how I love him! xxx

Overnight leave was not allowed, but I was allowed day leave and hubby would take me home on weekends if I was up to it.  But I wanted a night at home.  I wanted to sleep in the arms of my adoring husband… so I plotted.  In true ‘Terri’ style, I walked up to the very straight faced male Nursing Co-ordinator and pleaded my case for one night at home on the grounds of sexual frustration!  OMG the look on his face was priceless.  I told him it had never been denied before for this reason and he promptly told me that no-one had ever asked for this reason.  Needless to say, after thoroughly embarrassing him, he approved and I did get my night at home 🙂

So, medically, it was decided that I would be taken off the anti-depressant immediately to try and control the jerking.  Overall, I was on/off three or four different meds in this time and nothing seemed to help.  I was either wracked with anxiety or medicated so heavily that I felt like a zombie.  I even underwent another course of ECT, but sadly, this did not work to lift my mood either.  I did however have a period of time that the jerking subsided and I wasn’t walking around with legs wide apart trying to keep steady on my feet, but it didn’t last.

I had severe stomach pains for well over a month and had an endoscopy.  I was treated for H-Pylori with a very strong course of anti-biotics.  It didn’t help.  I would wake with anxiety around 4.30 am every morning, shivering and absolutely freezing (even though I had 4 blankets and had my air con set to 26 degrees in the middle of summer).  I had another MRI to compare to the previous one of four years ago and this time the news was not so great.  I was told that I have a benign brain tumour and some small lesions in my brain.  They compared it to the previous MRI and they noticed that the tumour had been there then and had been missed as it was tiny.  The Neurologist wants to remove the tumour but told me I was in no condition mentally to have the operation.  We will ‘wait and watch’ and I am due for another MRI early next year. My thyroid also decided to get in on the mix and was swinging from hypo to hyper. I had to adjust my dose of thyroxine on more than one occasion.  God, please give me a break……

I was told that I had Major Agitated Depression and Generalised Anxiety Disorder.  And it seemed to be treatment resistant.  My next option was to try a drug called a MAOI, but this would mean that I would have to adapt to a restricted diet and could cause serious complications if accidentally taken with other medications/supplements.  I decided that I didn’t want to subject myself to this and through discussions with my Pdoc, I convinced him that after a 4 year break from Zoloft, I would rather give that a go again.  It had worked so well for 16 years…. why not give it another chance?

I could tell that my Pdoc was frustrated with me at times.  I was so agitated and highly irritable, I knew I was not the easiest patient to treat.  I just wanted to go home.  So he doubled my dose of benzos to try and ease the anxiety.  He also started me back on Zoloft.  By now, I had withdrawn.  I barely left my room.  I cried and cried – I wanted to go home!  The decision was made that I was not making progress in hospital and I could be discharged with the arrangement of seeing my Pdoc weekly and also having a community nurse visit weekly to check on me.

As wobbly and off-balance as I was, I couldn’t pack fast enough…………

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Here we go again…

December 2012……

I knew exactly what was happening,  I knew this miserable feeling all too well.  Anxiety and depression had been creeping up on me for a couple of months.  I had put it down to the pre-Christmas rush-around and the fact that I had recently changed jobs from working 3 days a week to 5.  It got to the stage where I couldn’t go to work without taking Valium to help my anxiety.  I was still on anti-anxiety meds from my last bout of illness but nothing was working!  It was so close to Christmas, surely I could make it through and enjoy a few days off to rest and recover.

But something new to me was about to change my life.  On what would become my last day of work, I came home for lunch and ‘something’  just came over me and I became actively suicidal.  I had decided I couldn’t go through ‘it’ again.  It felt as if I wasn’t myself … but I was telling myself what to do and how to end it all.  How fortunate for me that in my altered state of mind, time had stood still.  I had returned to work to complete the last 2 hours of my shift, came home and sat down with pen and paper.  How devastating for my darling hubby to come home from work  to find his wife writing him a suicide note!  I will never, ever forget the look on his face, the tears of his anguish and our shared desperate feelings of helplessness.  I don’t know whether subconsciously I knew hubby would be coming home, whether I would have taken all those pills or not….  All I do know is that I was glad my hubby came home to a wife who was still alive!  I finally let out all the details of just how poorly I was coping.  He knew more than I thought I had let on… he usually does.  There and then I promised that if I ever felt that way again, I would call him or someone, anyone to help me.

We decided that I wouldn’t return to work as I felt that was the reason behind my decline.   I had had a very heavy workload for the last few months and I just needed time-out.  I was pretty numb and upset with myself for the next day or two but then Christmas would be upon us and …….

Anyone who knows me knows how much I love Christmas!  I take special pride in taking time to think about the gifts and wrapping them as nicely as I can.  I love spending time with my family and this year we were hosting Christmas lunch at our house.  We were Blessed with a beautiful day, a table full of yummy food, swimming in the pool and having fun…. I should be having the time of my life right?…..except I felt ‘wrong’.  I was irritable, anxious and really trying my hardest to make the day an enjoyable one for all, but feeling like I was failing. I was exhausted!  Too many people, too much noise,  I couldn’t keep up the facade much longer.

I know people say ‘just pull yourself together’ – but this is the last thing a depressed person needs to hear.  With all my might, I was trying to keep strong, push through and yet not only was I not improving, I was actually heading downhill at a rapid pace.   I started the dreaded jerking movements again and then things spiraled out of control.  My mind was catastrophising and I was telling myself that I was being poisoned by the meds all over again.

I made an emergency phone call to my psychiatrist and was admitted back into the private clinic on New Year’s Eve 2012….

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I have a blog!

Hmmmm…. thinking, thinking….  Where do I start, what do I say?

I suppose the fact that I am having many health problems at the moment has me struggling.  I want to write and write and write as it has always helped.  I have always kept a journal during my ‘down’ times and then tend to forget about it when I am feeling well.  I suppose the reason for that is that I am too busy ‘living’ when I am well and on the other hand I do everything in my power to simply ‘exist’ when I am unwell.

My life changed 4 years ago when I became extremely depressed and anxious.  It all happened so fast.  My first symptoms were that I was bumping into things. I would misjudge a door, desk, wall etc.  This progressed into muscle spasms that were so extreme, I couldn’t even hold a pen.  Coinciding with this were the hot flushes and night sweats.  What started as cautious concern soon turned into full blown anxiety.  I was very frightened and unwell.  I was referred to a psychiatrist who admitted me to a private psych clinic where I was diagnosed with Seratonin Syndrome and was told I was peri-menopausal.  This was after a diagnosis of Multiple Sclerosis was ruled out via a CAT scan and MRI.

SS is usually a result of someone taking an overdose of anti-depressants.  Or in my case, taking an anti-depressant for a long time and usually at a high dose.

So, lets rewind to 16 years prior. At that time, I had given birth to our son.  He was a very sick baby will multiple anaphylactic allergies. I also developed a thyroid auto immune condition called Graves Disease. I had to have a hysterectomy at age 30 and to top it off, I had a head-on car accident – not my fault (just had to add that!).  I became depressed and had panic attacks, which led to agoraphobia.  After a short stay in hospital, I was eventually placed on a new type of AD called Zoloft, which works on the seratonin in the brain.  I was never taken off this medication and in hindsight I should have been more pro-active in asking to be taken off them.

So (in 2009) after 16 years on this medication, the diagnosis of Seratonin Syndrome seemed pretty straight forward to me.  But this diagnosis brings it’s own set of problems.  I had to be taken off the medication at a very quick rate and this did not help my depression/anxiety at all.  In fact it only served to make life more bleak for me. How to treat my depression now?  I was given medication which helped with the anxiety, yet I was not responding well to  AD medications.  I reached a stage where I started having suicidal thoughts and thinking the world would be a better place off without me in it!  My body was also attacking itself with a change from my previous diagnosis of Graves disease to Hashimoto’s disease.  In other words, my body thinks that my thyroid gland is a foreign, awful thing that I can live without and is constantly attacking it to kill it off.  My antibodies for this were extremely high and I had multiple med changes to compensate.  This only aggravated my depression and I felt I had run out of options and decided to undergo a course of ECT.  I had a secondary psych treat me at this stage and during the course of treatments, he started me on a new AD and an old tri-cyclic one.  I slowly started responding and improving.  By 2010, I was working again and felt life was returning to normal.

I am happy to say that for the period of early 2010 – late 2012 I was functioning and ‘living’ again (albeit with hot flushes and my thyroid continuing to play up).  We enjoyed a cruise to celebrate our 25th wedding anniversary, we celebrated mine and Gary’s 50th birthdays, spent wonderful time with family and friends and although I had minor anxiety at times, it never held me back.  I was hopeful for a ‘normal’ life again……

Whew, guess I pick up from December 2012 in my next entry.

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