You never know what’s around the corner….

Writing my last blog entry has changed so many things.  I thought I felt the need to do so on a therapeutic level, you know, get it all off my chest.  Then it became a choice to be candidly open so that my family and friends knew exactly what I had been through, am going through and let them choose whether they wanted to follow my journey or not.  It did however, turn in to one of the most emotional experiences for me.  It was painful at times to relive my experiences and it was joyful to finally feel that a load had been lifted off my shoulders.  What I didn’t expect however, was the overwhelming support and encouragement I received.  Not only in comments on my post but from the many comments on facebook, texts and personal messages.  I would like to say a big THANK YOU to all who contacted me in one way or another to offer friendship and support, share their experiences to give me hope and to thank me for being so brave to put my story out there.

I have now been on Pyrimethamine for four weeks (increasing weekly) and I am supposed to increase again tonight.  I think I might delay this increase for a few days. It is not a nice drug.  Even though I am titrating slowly, I have had times of excrutiating stomach pain, headaches, nausea and chest pain.  Stubborn me is persevering as long as I can, as I see my lyme Dr next month and I am hoping things will have settled down a bit by then.

My depression and anxiety have been mostly manageable.  I would go so far as to say that they are the best they have been in over a year.  I think that the Modafinil may be contributing to this lift in my mood.  It has taken the edge off my fatigue, enabling me to be slightly more active and this makes for a happier Terri 🙂  Although I am still having times of tearfulness and have woken the last two days with high anxiety, I feel more able to ‘float’ through these feelings and are way more confident that they will pass… and they do!  Any respite is a welcome relief.

Then I get hit with something out of the blue that rocks me to my core.  After having quite a good day yesterday, I was feeling tired late in the afternoon as I had restocked my pill boxes, helped hubby with some business paperwork, tidied the kitchen and family rooms and then really went all out and washed the floors.  I had lunch, showered and then went and had my Cpap machine tested and a new mask fitted.  By the time I got home, I was spent.  I was resting on my bed and could literally feel a change come over me.  This happens frequently and I knew my mood was about to plummet or I was going to crash with overwhelming fatigue.  Something was wrong.  As it turns out, it was to be, what I call, a brain freeze.  This is where my brain feels like it is operating at only 10% output and affects my movement and speech.  In particular, this episode affected my ability to talk, choose words and I felt very confused and scared.  It was also accompanied by some jerky movements.  It started before dinner but I forced myself to have something to eat so that I could take my meds.  The worst was the first half hour or so, but I was still having difficulty with the speed of my thought process and speech this morning.  As the worst of it was passing last night and I had settled in bed, Matt suggested we catch it on video so that I can show my doctors what I go through when I tell them that my speech and thought processes slows down.  I am posting that video.

Today, I have struggled but pushed through.  I had an unexpected visit from my home nurse and a visit from my beautiful girlfriend to catch up for her birthday.  My speech was improving but was noticably different to the usual.  I had an upset tummy and severe tummy pains which was topped off nicely with a whopping headache.  I am trying so hard to ‘carry on’ and I managed two loads of washing before calling it quits for the day and retreating to my bed.  The stomach pains have remained and are really quite worrying.  I have the jerking, am sobbing and feel so sick.   Again, I am trying to stay positive in my thinking and am hoping that things will be back on track tomorrow.

Next day (Sat 13/9/14) – Well I had a terrible night last night.  I haven’t increased meds and am very concerned about the gut pain and nausea.  Still jerking and mood is low.  I have started on my Nilstat tablets in case I actually have candida, not that I am displaying any symptoms.  Positivity has taken a bashing as I don’t think I could tolerate this for another 5 months.  They said the first 6 months will be the hardest and I am only one month in.

Feeling quite defeated, but trying …. Terri xoxo 🙂

 

 

 

Hospitalisation August 2014

***TRIGGER WARNING***  Contains details of self harm and suicidal ideation.

I look back and see that my last post was in June… how can time go by so quickly when you virtually do nothing all day?

I am writing and sharing this post for and with my friends and fellow Lyme sufferers.  So there may be a few things that are repeated from earlier posts.  My reason for this is that this will be my main way of communicating with you all over the next few months as I plan to concentrate heavily on my recovery.  I have also found that at this stage in my illness, I am, at times getting overwhelmed and upset when I visit my Lyme support groups and read about the suffering that so many of us ‘Lymies’ are enduring.  I also feel inadequate that I am unable to join in and contribute more to the cause.  Geez, I am even jealous of people walking quickly or those laughing and living their lives as I once was able to.  Therefore, a break from social media is probably the best thing for me right now, however, I would still love to receive your facebook messages, texts and emails.  Please PM me if you don’t have my private info. So, PLEASE choose the option to follow this blog if you wish to receive email updates each time I post a new entry.  That way you will be kept up to date and I won’t have to repeat myself to each of you individually.  I’m sorry, but I just don’t have the energy to do so.

So to recap (and this is the short version), 6 years ago, we took a family trip to the US and within 6 months of our return, both my son (Matt) and I were displaying symptoms of MS.  We were both given MRIs which cleared us of this illness.  On top of my jerking and stumbling, my main symptoms were psychological and I had my first of many admissions to a private psych clinic.   My son however, displayed more of the debilitating physical pain and worsening MS symptoms.  After another MRI, he started to research and investigate what could possibly be causing him to be so unwell.  He stumbled across a list of Lyme symptoms and BINGO!!  He managed to see one of the few treating Doctors here in Perth and blood samples sent overseas returned a positive diagnosis for Lyme and quite a few co-infections.  He started treatment immediately and almost 2 years later, he is approx 80% better and still in the process of treatment to kill the remaining infections.  Meanwhile, I was in and out of psych hospitals where I had been diagnosed with Seratonin Syndrome, Major Agitated Depression and Generalised Anxiety Disorder.

I accepted this diagnosis, even though treatment didn’t seem to help. I have tried multiple types of anti-depressants, anti-psychotic meds, mood stabilisers and even two courses of ECT.  In the last 5 1/2 years, I have spent a total of one year in the psych clinic (hospital).  By December 2012, I experienced my first suicidal inclination and after finding me writing him a suicide note, my husband and I decided it was time for another admission.  This one would turn out to be the longest (4 months) and the most traumatic.  I must state here that I have a wonderful psychiatrist who has run every test known to man to try and find out what was wrong with me.  During this admission, he was still certain that I did in fact have MS and sent me for another MRI.  I was cleared of MS again, but more disturbingly, the MRI showed that I had a brain tumour almost 2cm in size.  Looking back at my first MRI, it was missed as it was so tiny and just starting to grow.  It is a meningioma which grows from the lining of the brain and is located at the top of my brain between my two frontal lobes.  I have been reassured by the fact that 90% of meningiomas are benign and slow growing.  Even so, my neurologist wants it removed ASAP before it starts to cause seizures etc but told me I was not mentally stable enough to handle such a big operation.  So for now, I am on watch and wait with a yearly MRI to monitor it’s growth.

After 4 months in hospital, no positive response to medications or ECT,  I am sent home as I am not making progress.  Maybe I will improve if I am in my home environment and continue to see my psychiatrist weekly.  I am also allocated a home nurse who visits weekly to monitor my condition and tries to encourage me to do the things that I no longer have the confidence to do after such a long hospital stay.  I have lost my confidence to drive, am agoraphobic, socially withdrawn, am extremely depressed and living with torturous anxiety.

Then the breakthrough!  About a month after my discharge, my psychiatrist mentions that he wants to run a test, “just to rule it out” and I ask what the test is for and he says Lyme disease!  I nearly fall off the chair.  We discuss that Matt is Lyme positive and organise a simple blood test through a local collection office and of course, the result is negative.  My psych is happy with this result, but by now, I am far more educated on Lyme and know that the blood test I had had is grossly  inadequate and unreliable.  As a family, we decide that I will see a Lyme Dr and send my blood overseas for testing as Matt had done.  DOUBLE BINGO!!  Not only do I return a positive for Lyme, I also have 3 co-infections!

The Lyme Dr I had seen was just starting out treating Lyme patients.  I had opted for this choice as my appointment to see Matt’s Lyme Dr (recognised as probably the leading treating Dr here in Perth) was months away.  My new Lyme Dr immediately placed me on full doses of two very strong anti-biotics, saying “we will hit it hard and fast.”  BIG MISTAKE! I herx so badly that my anxiety and depression intensify to unimaginable degrees and I plummet into the world of suicidal ideation, intense chronic fatigue and a world of hoplessness that I have never before experienced.  We decide to stop this treatment and I am recommended to a Lyme aware Naturopath… my life saver!!   I am placed on the Lyme diet of eliminating gluten, dairy and sugar from my diet.  I am also given supplements to boost my immune system and reduce inflammation.  I also undertake IV infusions to assist my body to detox, but these also induce a terrible herx reaction and I am forced to cease these treatments.  So I continue on the natural therapies and diet changes until my appointment with my new Lyme Dr comes about.

By this time, I have been virtually bed bound for months.  I have endured the terrifying experience of a seizure and I am still suicidal.  My new Lyme Dr places me on different anti-biotics which I start to build up slowly.  Again, the herx reaction is horrific and I am begging my husband to release me of my promise, so that I can euthenase myself and  be free of this torture.  I am feeling extremely guilty for being sick for so long.  Hubby is working 6-7 days a week, coming home and cooking and cleaning, maintaining the household finances and I can feel the pressure my illness has put upon him.  Every thing is my fault and I feel it would be much easier on my family if I were no longer in it.

Discussions with my psych and Lyme Dr result in the ceasing of anti-biotics, yet again.  I only remain on one Lyme medication called Plaquenil.  By now, I have also developed Health Anxiety (any small issue to do with my heath or medications send me into panic and I spiral out of control) and Obsessive Compulsive Disorder.  Mostly my OCD is to do with thoughts but I also have rituals which are most annoying and energy sapping.  I don’t have the cleaning type of OCD (not that I have the energy anyhow) or the fear of germs etc.  I must touch things a certain amount of times, walk around a post on the chosen side, place things in a certain way etc etc. Compulsions or something bad ‘might’ happen.  My brain is totally screwed and getting worse as time goes by.

We decide that I will change psych meds to an older type which is helpful for depression, anxiety and OCD.  It is our aim to gain me enough relief so that I can recommence Lyme treatment with minimal herx reactions.  IT IS MY LAST HOPE!  It takes 4 months to build me up slowly on this med, trying to keep the awful side effects to a minimum.  But every time I have a blood test to check my levels, they come back that I am not yet in the therapeutic level.  I am going through hell with this med change.  My mood is up and down to the extreme – sometimes daily or even hourly.  I am having bouts of neurological sobbing which can last from hours to weeks and I am having terrible MS symptoms again where I can barely walk or talk. I am so physically and mentally exhausted.  I am not thinking rationally and continue to blame myself for not being stronger, more active, a proper wife and mother or friend.  I then hit an all time low and to ‘punish’ myself, I inflict my first case of self-harm.  I grab a kitchen knife and slash at my forearm.  WHAT THE HELL AM I DOING???  Fortunately, I have chosen a blunt knife and only leave small scratches on my arm.  But, even so, it has eased my anxiety and released so many pent up feelings.  This doesn’t turn out to be a good week though, as it is the first anniversary of a much loved Lymie who released herself from her pain and to remember her and all the others lost to this revolting disease, Red Shoe Day is launched internationally.  Everyone in the Lyme community are posting pics on facebook of themselves wearing their red shoes, or at gatherings and organised get-togethers.  Me? I am lying in bed, jealous of those who are no longer with us and feeling extremely inadequate as I can barely manage to get up to go to the toilet.  I want out.  Again, I beg my husband to let me go and of course, again, his response is no.  He lies with me on our bed and after telling me that he couldn’t live without me, I then beg him to take his life with me, so that we are both gone and neither of us has to live without each other.  In this irrational spiral, I take no-one else in to consideration.  I am void of all feeling…. void of the impact this would have on our beloved son, parents, siblings family and friends.  It is then that my husband breaks down and I am snapped back into reality by the hurt I have caused to the love of my life.  We both know that he can’t continue to race home from work during the day to check on me and make sure that I am safe.  We both know that it has now reached a critical point and we decide that I need to be readmitted to hospital.  This is my worst nightmare after enduring 4 months in there last time.  I call my nurse, he visits immediately and I am admitted to hospital on July 29th, 2014.

It takes days for me to settle down in hospital.  By now, I have reached 200mg daily of the anti-depressant and when I stand, my blood pressure drops dramatically and I faint. We have no option but to reduce it and do so quickly. I undergo 10 med changes in 10 days and this takes its toll.  I have another seizure.  I am so dizzy, I walk with one hand on my head and the other on the wall.  I have to walk to the nurse’s station for my medications 5-6 times a day.  It is hell.  I am not sleeping properly, I am sobbing uncontrollably and rather than spending my days in bed, I must be up, showered and had breakfast by 9am so that I can attend activity group.  The worst part of my day is my mornings and I improve as the day goes on but by 7pm I am exhausted.  I must wait until 8pm for my night meds.  I have made up packets for each of my breakfast and lunch shakes.  I hide some of my natural supplements in my room so that I am not needing them to be administered by nursing staff.  I feel alone, tired and NO-ONE UNDERSTANDS OR EVEN KNOWS WHAT LYME DISEASE IS!! I am so frustrated and I feel the anger and blame towards myself building again.  Especially as I am in hospital for my son’s birthday. We always make a fuss at home and this year feels so cold and uncaring.

From my first appointment with my current Lyme Dr, he has told me that my depression and anxiety are caused by Bartonella and Babesia infections and the only way to cure these is with long term anti-biotics.  I am not sure that my psych has always agreed.  Some part of me still believes that he thinks he can ‘fix’ me using psych meds and of course ECT.  The problem has been that when I herx, my mental health deteriorates and I become suicidal.  I feel that I am in a no-win situation, now that our last plan of attack seems to have failed miserably, along with all the others.

Having spent the best part of the last 6 months in bed, I am now expected to be up and at it like everyone else – I wonder how many other patients have chronic fatigue.  How others who are deeply depressed and tired cope. Are they managing to rise and shine so early?  It doesn’t last long for me.  After a week or so, my body just can’t keep up.  I am waking at 8am, having breakfast, but I choose to wait until the sobbing stops each morning before I shower.  I try to make the second session of activity group, but the noise and hustle and bustle of talk, chairs scraping on the floor etc is too much for me to cope with.  I need to sit alongside a wall for support as I am so dizzy.  By week 3, I decide that instead of helping me, I am finding attending group is setting me back and I only attend one or two more sessions over the remainder of my stay.  They have an appeal running for Christmas, where patients make toys and they will be sent overseas to orphanages.  I knit my first ever teddy bear.  It is a success, so I knit in my room in peace and quiet.  I find that knitting helps reduce my ruminating thoughts and anxiety and is strangely relaxing, so on my weekend day leave, I stock up on supplies and maintain a habit of breakfast and meds at 8am, shower by 11am and then knit, knit, knit 🙂  It works for me!

On my third week in hospital, I have a scheduled appointment with my Lyme Dr.  I tell him that I am in the psych clinic again.  He says this is where he wants me, as the time has come to bite the bullet and begin back on anti-biotics to attack these bugs once and for all.  He is terrified of my herx reactions and wants me to start the treatment whilst I am an inpatient so that I can be monitored for my safety.  Due to my extreme drug sensitivity, I need to have my meds compounded into an even lower dose than normal and titrate slowly.  This should reduce herxing.  He also wants me to start a new herbal detox programme which is available by prescription only.  I am also to go back on to Aloe Vera juice 4 x daily. (I had stopped this since my admission as it needs refrigeration and would have to be administered by nursing staff.  I felt the less they had to administer the better.)  Again, I mentioned that my psych would like him to make contact so they could work together on my case.  He said he had tried but couldn’t be put through when my psych was with a patient.  I also mentioned to him that I had been seen by an Associate Professor Physician (they actually know each other) and he said that he was just in the process of replying to him about my case.  Things seemed to be moving in the right direction as my Lyme Dr promised to call the hospital that night to talk to my Psych.

So that night, my psych and rostered nurse come to talk to hubby and I about the appointment with my Lyme Dr.  I went through everything we discussed and mentioned that my Lyme Dr said the probability was that the Lyme was causing a minimum of 80% of my depression and anxiety and the remaining 20% was probably reactive depression to being sick for so long. The 80% would only respond to Lyme treatment and the 20% may respond to psych meds.  I then mentioned that my Lyme Dr would like me to start his treatment whilst I was in hospital and that apparently he had tried calling my Psych previously but couldn’t be put through because he was with a patient.  My Psych went off!!   Basically called my Lyme Dr a liar as he never refuses calls from other doctors, even if he is with a patient.  And as I was admitted under HIS care, my Lyme Dr needed to make contact so that it could be stated in writing exactly what medications I was to start on and the titration rate.  My psych apologised to me for raising his voice and airing his frustrations, but I again felt it was all my fault and the blame game against myself was nearly at boiling point.  My psych left saying that he had not had a call from my Lyme Dr that night and would be calling him tomorrow and spelling it out very clearly how things needed to work.  Legally, my psych was responsible for me during this admission and my Lyme Dr had to lift his game and come to the party.

They left and hubby went home, saying “well that went well”.  “Looks like we will be heading in the right direction now”.  My brain was saying “Fuck, I need these two people to work together and it’s one friggin phone call to help me! I’m not even worth a phone call? It’s all my fault, all my fault.”  I was distraught and started scratching at my forearm with all my might. Blood came to the surface and then I noticed the key in my locked drawer.  I gouged into my arm for I don’t know how long.  I was covered with scratches, blood and bruises.  But I felt better… I felt I had been punished and my anxiety relieved.  The bruising was deep and I could barely move my arm for two days, but I left no tell-tale scars. I showed my husband the next night and complained of the pain.  He said “well you won’t do that in a hurry again will you.”  And I haven’t.   The next few day’s events would make something inside of me ‘click’ that this wasn’t my fault. I am already hurting enough, why should I make myself hurt more?

Two days later, my Lyme Dr had faxed through instructions and a detailed history of my presenting symptoms, blood test results and his plan for my treatment.  He had also contacted the AP Physician who came to see me.  I have chronic neurological borreliosis and infected central nervous system accompanied by severe Bartonella and Babesia infections. He summed it up in one word: Nasty!  I now had three doctors who were working together, knowing my diagnosis and trying to help me. Now I just had to work on the nurses.  I emailed hubby, who printed off information brochures and these we gave to the nurses and one was kept on my file.  Nurses started to ask more questions – well most of them.  There are still those that only go to work to get paid and spend most of their time checking their mobile phones.  I don’t think anything will ever get through to them unless someone they love gets Lyme disease.

After one month and two increases in my new Lyme med (without any herxing), I discharged.  I wrote a loving thank you card to the nursing staff and also begged them to google neuroborreliosis and bartonella depression.  As I explained to them when I left, if you had a patient with schizophrenia and you were unsure of the symptoms, I am sure you would research that.  Please, grant me 5-10 minutes of your time and do the same for me.  I doubt that I will be their last Lyme patient and as I have been told that the next 6 months could be pretty rough going, there was a good chance I may end up back in hospital for a week or two at a time to see me through critical stages.  It would be nice if they were more informed next time 🙂

I have been home for just over a week and I have had my ups and downs, but nothing compared to how I was prior to my admission.  I still have bouts of neurological sobbing – I can’t control these, I don’t even know why I am crying.  These episodes are very different from psychological crying which is in response to an emotion or event.  I am still trying to maintain breakfast between 8-9am and showering and getting dressed early.  I am managing on most days to do a few chores early on then I sit on my bed and knit when I feel my body is telling me to rest.  I have progressed on to cute rabbits and koalas and my next project is a piglet.  I have until October to get the toys back to the hospital for despatch to the orphanage.

During my stay, I was started on a new tablet called Modafinil. It is a stimulant med given to shift workers and people with sleep apnoea (which I have).  It has really taken the edge off the chronic fatigue.  My Lyme Dr has never tried anyone on it before, but I will be filling him in when I see him in October as I think it is very beneficial.  Well at least to me.

I have found it hard to connect with a lot of other Lymies as my main symptoms are psychological. I live with mental pain every day and only have bad jerking, dizziness, instability, stuttering etc when I have, what I call a Lyme flare or Lyme crash.  Most lymies I know, live with chronic daily pain and the psychological symptoms come as a result of that or due to treatment.  I have found it most interesting that this time round, I have experienced knee pain on this new med.  I guess it is a good thing – letting me know that the bugs are being killed off.

To my Lyme friends: please don’t hesitate to contact me if you want to ask any questions.  I won’t give out the name of my Psych as I have done that previously and he is not taking new patients.  He also feels that he is not knowledgeable enough on Lyme disease as yet and is trying to learn as much about it as he can through reading books and information I have provided and continue to provide him with.

To my family and friends:  Thank you for wanting to understand what is happening to me. I know that this is confronting reading, but I speak from the heart and tell it as it is.  If you choose to follow this blog and maintain contact and support, I would be most grateful.  A little text message or PM goes a long way 🙂  I am not an axe murderer or lunatic, I am still Terri deep inside.  Remember me as I used to be: happy, energetic, busy, always willing to lend a hand or help a friend.  I will get back to being that person, it is just going to take a while…maybe a year or two even.  Please know that you can’t catch this from me (unless we have sex haha).  Please don’t judge me.  I would like to think that none of the people I care about would judge me…. I got bitten by a tick, simple as that and it has turned my life upside down.  If you visit and I walk or talk funny, laugh with me or hug me as I cry.  Most importantly, understand that I am probably going to get a lot worse before I get better.  Support and words of encouragement or doing my ironing mean a lot to me! ;P

To all who made it through this epic post to this point:  THANK YOU!!! I wish you all peace, joy and good health.

Terri xoxo

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