Friday, 30 April 2010
BEFORE I CAME TO SEE YOU FOR MY FIRST APPOINTMENT, I HAD ALREADY BEEN ILL FOR A LONG TIME..... I WAS TIRED, AND ACHING, AND NAUSEAUS – AND WITH NUMEROUS UNEXPLAINED SYMPTOMS. I DIDN’T KNOW I HAD HEPATITIS C. I DIDN’T EVEN KNOW WHAT IT WAS. BUT IT HAD CHANGED MY WORLD – ERODED MY QUALITY OF LIFE IN SO MANY WAYS. AND I NEED YOU TO UNDERSTAND THAT THROUGH ALL THAT TIME, WHEN I HAD BEEN STRUGGLING SO MUCH WITH MY HEALTH, I HAD ALREADY SEEN MANY DIFFERENT DOCTORS AND HEALTH PRACTITIONERS. MANY OF WHOM HAD SENT ME AWAY, TELLING ME IN EFFECT THERE WAS NOTHING WRONG WITH ME ... OR IT WOULD PASS... OR PERHAPS, THAT I WAS NEUROTIC.
SO I HAVEN’T ARRIVED TODAY WITH A BLANK CANVAS. I AM ALREADY FEELING ANXIOUS, AND YES, A LITTLE LACKING IN CONFIDENCE OF MY OVERALL HEALTH CARE.
PLEASE UNDERSTAND, THOUGH, THAT I CARE ABOUT MY LIFE AND MY HEALTH. I WANT TO GET WELL: FOR ME, FOR MY FAMILY AND FRIENDS, MY WORK, AND ALL THE THINGS THAT MAKE FOR A FULL AND ACTIVE LIFE. SO WHEN I ASK YOU QUESTIONS, IT IS BECAUSE I WANT TO LEARN AND TO KNOW HOW TO MANAGE MY TREATMENT – WITH YOUR HELP – SO THAT I CAN MAXIMISE MY CHANCE OF CLEARING THIS HORRIBLE VIRUS.
PLEASE REALISE THAT I DON’T HAVE A NOTEBOOK IN ORDER TO READ FROM A CHECK-LIST INTENDED TO CHALLENGE YOU AND YOUR EXPERIENCE. MY CHECKLIST IS TO HELP ME GATHER MY THOUGHTS – AND TO ENABLE BOTH OF US TO WORK WELL TOGETHER AND BE SURE WE HAVE CLARIFIED ESSENTIALS. I AM JUST FINDING OUT ABOUT HEPATITIS C.AND I NEED YOU TO KNOW THERE'S BEEN A PERIOD OF A LOT OF ADJUSTMENTS AND A HUGE LEARNING CURVE. THROUGHOUT MY TREATMENT, BECAUSE I AM SICK, AND MY CONCENTRATION IS AFFECTED, I ASK YOU TO BEAR WITH ME, IF I SOMETIMES NEED TO REINFORCE THE FACTS OR ASK FOR FURTHER EXPLANATIONS.
I REALISE FROM YOUR RESPONSES THAT SOMETIMES, YOU MIGHT THINK THAT I AM TRYING TO PIECE TOGETHER TOO MUCH SPECIALISED KNOWLEDGE. SOMETIMES, WITH VARIOUS MEDICS, IT SEEMS AS IF IT’S REGARDED AS INAPPROPRIATE,EVEN ODD BEHAVIOUR, WHEN I WANT TO ASK ABOUT AND PROPERLY UNDERSTAND MY OWN BODY, MY BLOOD, MY TREATMENT. I ASK THAT EVEN IF I SOMETIMES MISUNDERSTAND CERTAIN THINGS – YOU WILL PLEASE BE PATIENT, AND LISTEN AS I PIECE THINGS TOGETHER. IN WHAT I SAY, THERE MAY BE NEW LEARNING AND MATERIAL WHICH IS USEFUL TO YOUR PRACTICE, BOTH IN WORKING WITH ME AND FOR YOUR OTHER PATIENTS TOO.
I WOULD LIKE YOU TO KNOW THAT WHEN I RESEARCH MATERIAL, THROUGH SUPPORT GROUPS, AND ORGANISATIONS OR THE WEB AND INTERNET FORUMS, I AM NOT OBSSESSIVE OR UNSTABLE. I AM LINKING UP WITH OTHER PATIENTS WHO INCREASINGLY UNDERSTAND WHAT A POSITIVE AND REAL DIFFERENCE IT CAN MAKE TO SHARE EXPERIENCE AND INFORMATION. WE ARE BEING PROACTIVE AND HELPING OURSELVES AND EACH OTHER – AND HOPING TO ENCOURAGE GREATER UNDERSTANDING OF THIS DISEASE. BOTH FOR OURSELVES AND ONE ANOTHER, THE GENERAL PUBLIC AND THE HEALTH SERVICE. PLEASE DON’T ASSUME THAT I AM SO NAIVE AND UNAWARE THAT I AM GOING TO SOAK UP ANYTHING I AM FED, VIA THESE OTHER SOURCES, WITHOUT DISCUSSION OR DISCRIMINATION. I AM SENSIBLE ENOUGH TO COME AND ASK QUESTIONS AND CROSS-REFERENCE. AND YET I STILL DO APPRECIATE IT IF YOU GIVE ME FURTHER GUIDELINES OR EXPLANATIONS.
AND WHEN YOU DON’T KNOW THE ANSWER, I APPRECIATE IT WHEN YOU TELL ME SO, AND OFFER TO CHECK IT OUT FOR ME – OR POINT ME IN THE RIGHT DIRECTION. IF YOU LISTEN AND BE PATIENT WHEN I STUMBLE – BECAUSE, AGAIN, REMEMBER, HEPATITIS C AND TREATMENT ERRATICALLY AFFECTS MY CONCENTRATION – SOMETIMES, I MAY HAVE DISCOVERED KEY FACTS ABOUT NEW RESEARCH, OR TREATMENT MANAGEMENT, WHICH COULD BE HELPFUL TO YOU AND YOUR CLINIC.
OF COURSE I RECOGNISE HOW MUCH YOU KNOW ABOUT HEPATIS C AND I REALISE YOU HAVE EXPERIENCE, AND GUIDELINES TO FOLLOW. I HOPE YOU CAN RESPECT ME, TOO, AND REMEMBER THAT I AM NOT THE SAME AS EVERY OTHER HCV PATIENT WHO YOU SEE. I NEED YOU TO KNOW A LITTLE BIT ABOUT MY PERSONAL CIRCUMSTANCES, MY REAL LIFE AND DAY-TO-DAY SITUATION AND HOW IT IS AFFECTED. ALSO HOW MY CIRCUMSTANCES MAY AFFECT MY TREATMENT. IT MAKES A DIFFERENCE WHEN YOU USE MY NAME, AND REMEMBER SOME SMALL, PERSONAL DETAILS ABOUT MY LIFE, WHICH I HAVE TOLD YOU.
PLEASE ASK ME HOW I AM AND WHO CARES FOR ME. I NEED YOU TO KNOW WHAT IS MY SUPPORT NETWORK – OR LACK OF ONE. AND TO HAVE SOME PICTURE OR HOW MUCH I AM STRUGGLING TO CONTINUE WORK, OR COPE WITH THE DISAPPOINTMENT OF STOPPPING WORK. DO YOU KNOW IF I AM BECOMING ISOLATED? IF MY FAMILY ARE STRUGGLING TO COPE WITH THE TREATMENT AND IT’S EFFECT ON ME? PERHAPS I HAVE NOT KNOWN HOW TO EXPLAIN THE LEVEL OF DEPRESSION OR MOOD SWINGS THAT ARE AFFECTING ME – OR JUST HOW HARD IT IS TO FEEL AFRAID TO TELL CERTAIN PEOPLE IN MY LIFE ABOUT THIS DISEASE
AND ESPECIALLY, WHILE I GO THROUGH TREATMENT, I NEED YOU TO BE SOMEONE I CAN TALK TO AND CAN TRUST. SOMEONE WHO UNDERSTANDS THAT I DO THIS DAY BY DAY AND WEEK BY WEEK AND SOME DAYS ARE TOUGHER THAN OTHERS. THAT SOMETIMES I FEEL AFRAID, ANGRY, DISCOURAGED OR FRUSTRATED - AND JUST VERY, VERY TIRED.
I NEED TO FEEL COMFORTABLE WHEN I COME AND SEE YOU – NOT WARY AND WORRIED. COMFORTABLE THAT YOU ARE AN ALLY AND WILL HELP MAKE THE JOURNEY AS SMOOTH AS POSSIBLE FOR ME. PLEASE RECOGNISE THAT I AM FINDING THE SIGNPOSTS AND THE TRAVELLING COMPANIONS ALONG THE WAY – AS WELL AS DOING THE LONELY STRETCHES WITH AS MUCH COURAGE AND DETERMINATION AS I CAN. WHEN YOU HELP MAKE THE ROAD AHEAD MORE CLEAR – WE CAN BOTH KNOW THAT IT IS ME THAT HAS TO TAKE EACH STEP. THANKYOU.
(written by eva day.)
Sunday, 18 April 2010
In any case, they feature prominently in my day, after I discovered them last night, in the bottom of my hospital overnight bag.
Wednesday, I did my interferon jab in the morning, and went off to the hospital for a minor operation, expecting to be home that evening. But the last time I had day surgery, there were slight complications afterwards, and they ended up keeping me in overnight. Of course,then, I didn't have any personal items with me, and it was a bit annoying. So, via the perverse laws of Sod, I figured that if I did have an overnight bag with me this time, then all would go well, and of course, I wouldn't need it. This worked - ha! Sod was foiled! I came home, was hellish to be around for about an hour, apparently, and then settled down back on the sofa again, to rest up and recover. Spare toiletries, pajamas, etc, have remained in the bag, unpacked for the last few days. Shocking, isn't it?! You would be appalled at how shoddy I am being just now.
Yesterday evening (Saturday) after being miserable and at odds with myself and the world for much of the day, while my daughter zoned out on mobile phone games, I was sprawling pathetically on the sofa feeling thouroughly sorry for myself. I finally decided to rally and set a few small goals, to arrive at some sense of achievement and to haul myself out of the pits of a foul mood. A little bit of pottering and clearing up was a start; whatever could be done one-handed, as left hand is in splint and sling.
Time to put away bits and pieces that were still in the hospital bag, which was dumped on top of a pile of un-sorted laundry. Emptying the bag, I found, at the bottom, a packet of pills. They are called Lofepramine, and are a sort of reddish-purple colour, as mother and daughter discussed. They are my anti-depressants. I took them down to the kitchen, to put away with the rest of my extensive pharmacy stock. Realising it wass nearly time to take my evening medications anyway - only 20 minutes off regular time - I decided to have a banana and a bit of toast, and take them early.
So I grabbed my pill box (all very well organised) and noticed that in each compartment, marked for the days of the week, am and pm, there were the familiar assortment; tiny, white tablets, fat, round yellow ones, small green capsules, and the very important oval pinkish coloured Ribavirin tablets. It all looks a bit like a pick 'n' mix. No reddish-purple ones, though. Moment of realisation! It seems I hadn't loaded my anti-depressants in, along with the others, on Weds morning before doing my injection and going off for my op. The normal routine for me is to do my jab and Wednesday mornings, and re-stock my pill box. But clearly, something had gone pear-shaped with my well-executed (or so I thought) preparations before going to hospital. I had taken some extra meds in my bag just in case - but I hadn't re-stocked the pill box properly. So, of course, though unaware of this, I hadn't been taking my anti-depressants for the last few days. Ok, I think, bloody typical; if I was going to omit a pill - it had to be the damned AD's, didn't it? (Blood pressure, anti-histamines, all the various supplements, they are all there.) Then I think; well, thank god it wasn't the riba; fortuntely I am right on track with them.
I had, before that, found myself wondering about the fact that I had been feeling fogged, weepy, angry; and curiously, both full of self-pity yet strangely determined to put on a cheerful head - tell myself and everyone that "I am fine, absolutely fine." Surely not still the anaesthetic, after a few days? And this is more intense, I am sure, than my usual post-jab response. Perhaps it's also because I am missing my husband, who is abroad for a couple of weeks? And now I am also thinking; well there is another key ingredient also; I haven't been taking my anti-depressants for the last few days.
On a practical level, apart from missing his presence, I recognise that had my husband been here, he would have done most (ok - all!) of the basic chores, and I would have concentrated, and sorted my pills properly, instead of wondering around in pointless circles, thinking I was being efficient.
The morals of the story are: a pill box is a wonderful thing, if (like any system) you actually use it properly. A good husband is worth his weight in tablets as well as gold. And some of us on treatment are beyond all sense, without our anti-depressants.
May all your tablets be taken, your capsules consumed and your pills be popped!
I missed a couple of days ADs once before, by mistake. Either we live and learn, or we repeat the same mistakes, again. And sometimes - again! A lot depends on circumstances. And brain fog, of course.
Monday, 5 April 2010
for broader over-view, please read Part One first. (There you will also find links to more background information and to support options) Many patients will experience at least some occassional milder mood changes; having a realistic understanding of wha to expect during treatment does help.* Some people will have more intense reactions or go through periods when they do; these articles are to help understanding for them as well as their family or friends. .
Individuals stories, and thought to hold on to if ever you do “loose the plot” and wonder what the heck is going on with you. I did say “weird and vacant.” Vacant was how I felt when i was: volatile, anxious, confused, angry, neurotic and tearful. I add this note as a direct description of my own experience - and a sort of anchor, to help you remember; No blame, no shame: remember it’s the meds and chemical reactions, as well as normal human responses to illness and struggle. Hold on to humour and as many routines as you can, to stabilise and normalise your days. You will emerge, stronger, wiser and more resilient than ever ..... and I hope: virus –free. Here is what some other patients said when asked "what were the most difficult side effects of treatment?" (many patients have only mild reactions in this area: others experience it more, as did these people.)
"The mind stuff is certainly the worst. The feeling of being absolutely useless at everything I once took for granted; like being able to process information. This and the insomnia which makes it 100x worse.“bugs”
(note: due to secondary health issues, at one point this person had to choose whether to cease or to continue treatment, when chances of successful outcome were looking like they were seriously reduced. Despite having suffered the “Weird” effects, this person chose to continue: stronger than ever before and determined to fight the disease.)
"I have done two treatments, one without Ad’s and one with. I thought I was fine with the 1st treatment, but in fact I was not. The interferon had bought and booked me onto the crazy train - and I was not even aware I was going for the ride. The 2nd treatment, with Anti-Depressants, was still challenging- emotionally and mentally. ut at least I had a footing and base to keep things together.
Some folks do just fine without the Ad’s (but in my opinion ) they could be on the train and just don’t realize it. I have yet to come across anyone in all my time in Hep C circles, that wasn’t affected by the Interferon in some way mentally. For some these are just subtle changes; but for some these changes are drastic. Again this is just my opinion but I believe they are a very important component to treatment and should be started before Tx begins to get the full affect. I’m also of the mind that the pre-treatment stress and anxiety calls for anti-depressants, for some folks as a norm. (M. G.)"
(this patient did not clear the virus, but continues to support others through effective management of treatment, to maximise chances of full recovery.)
"The worst side effect is the mood swings caused by Interferon Alpha.Some experience full-on depression, but with me it was full-on anger and impatience .This manifestation didn't much hurt me, but everyone around me , like my family (my immediate one), who had to endure hell for the weeks when I denied I had an anger and impatience problem on treatment. .For the whole of my 2nd treatment , I managed the brain chemistry changes with Citalopram, and fluctuated between 20-40mg per day.However, my 1st treatment was different, on this treatment, I held-out until week 24 without an SSRI and my wife (carer) and daughter suffered horrifically. It was at week 24 that I was frog marched to the GP, by my wife, for some SSRI's , apparently I was a puppy-dog within 48 hrs of taking them .So why is uncontrollable anger and impatience the worst side effect of HCV Combined Therapy?Because, if left to go untreated (unmanaged) , it can destroy a long-term marriage, relationship between partners and destroy a parental relationship .In my case, it did not result in this terrible outcome to treatment. But I've heard enough patient stories to now realise that it happens very frequently" .Ross xxx
(note: 1st treatment did not succeed for this patient. Despite his experiences of mood reactions described, he chose to undergo treatment a 2nd time, in a commitment to clearing the virus. On 2nd round, happily he won the battle. For info re anti-depressants, please see links in Part One)
"Depression, Anger, Anxiety and generally being out of my mind. I got so emotionally unhinged at the end that I looked like and acted like those weird crazy people you avoid if seen in public. I knew it, but could not stop it. I just had to roll with it because I was not going to stop tx. This was with taking anti-d's. I shudder to think how horrid I would have been without, as I was horrid enough with them." Peek.
(note; this patient has done treatment twice and has elsewhere stated that had she not cleared the virus; would do treatment again, if she had to...Fortunately she is now post-treatment, virus free and recovering well. )
An overview of outcomes for people I have known through support forum and internet connection: Of those who have completed treatment and cleared the virus .... despite the more unpleasant aspects of mental or emotional sides .... none has said that they regret undergoing treatment.
Of those who unfortunately did not clear the virus, many have continued and done treatment a second time, even those who found emotional reactions challenging: they were prepared to ride these side effects through again in order to beat the disease.
Even where outcome of clearing virus completely was not successful; viral load and liver damage, as well as other Hep C symptoms, are likely to be greatly reduced in any event; thus minimising health problems and improving potential quality of life and longevity.
For those patients who did not clear, although there will have been initial feelings of anger and resentment at the experience of treatment; but the longer-term outcome, once they have recovered from intitial shock, is eventual acceptance. And recognition of the alleviation they will have achieved. And so, generally , without regret; but, instead, glad that they had undertaken treatment - and often waiting for an opportunity for re-treatment or new trials, in determination to be clear of HCV. I have read a comment by one person who was an exception to this trend; sadly this person had experienced other very complicated personal circumstance during and just after treatment.
This closing thought is offered as those making the choice to begin treatment, and to those experiencing he more difficult periods. Keep fighting ... HCV can be a very serious disease and so the battle is worth it. Wishing you peace, courage, as smooth a ride as possible, good support; and good health, good living!
xxx eva day
* please see separate article (to be posted soon) re studies showing how realistic expectations of treatment, before commencing, can make a great difference to successful management of treatment.
** also, to be posted in future; notes specifically discussing experiences of temporarily reduced concentration, general thinking skills and recovery of cognition, post treatment.
Sunday, 4 April 2010
This is a basic over-view of emotional and mental reactions Hep C patients might experience, while on treatment. . For explanation of medical causes, and for further information, please follow links given at end of article.
I’m calling it the weird experience because during treatment, general perception of day to day reality can feel very surreal.
I use the word “weird” as an anacronym and in a lightly humorous way. This is about getting past concerns of there being something “wrong” with us when we experience these emotional reactions on treatment. So, with a little gentle laughter and relief from fear: weird stands for
Withdrawn, Emotive; Irritable; Reactive; Depressed. ......
Ok; sounds pretty unpleasant?! These sides vary, amongst different patients, from minimal and transitory – to more extreme. In general, for sure, treatment is no picnic. Even if you do remain fairly level most of the time ...... there are likely to be moments....
My own take is that treatment is a commitment, and can be tough: but worth it with the end goal in sight. Clearing the virus.
. Having a clear and realistic sense of what treatment entails is one of the best foundations for managing it well and successful outcome. Some people do find the mental effects worse than some of the physical side effects. But, with the right medical and social support, they are manageable and it is doable. So here are some of the more common experiences;
Withdrawn. Fatigue, discomfort and irritability may make you tend to absent or isolate yourself. . Some retreat may be part of the process of diverting energy into fighting the virus. Too much disconnect, though, will exacerbate depression. Try to step out of the bubble and interact, even briefly, as regularly as possible, without becoming exhausted.
Emotive. Emotions and perceptions may become heightened. For example; anxiety; feeling weepy; sudden and intense changes of mood or odd thoughts, paranoia. etc. . without always knowing what is the trigger. Keep an eye on your sleeping patterns. Insomnia can make this more severe.
Irritability. Pretty common: from irritation at things that wouldn’t normally bother you, to full-blown fury .(Often referred to as “Riba Rage”, named for the Ribaviran.) -Hopefully, friends and family will understand some edginess and and ride out even the occasional more extreme reactions. It may be reasonably containable: but , if it reaches the level of aggression, or potential abuse; get help. . (see quote by “Ross” and others, below in Part Two.)
Your thoughts and your interactions with others – can be magnified –at times you may be hyper-sensitive: a minor concern, suddenly becomes a compelling fixation or a slight disappointment suddenly is hugely unfair .... and others seem insensitive to not understand your feelings, but later, it may seem no big deal. Some people get a bit paranoid or generally anxious. . Try to remember it’s not you, it’s not real .... it;s the meds. Used post-its, stuck around the house, as reminders of this.
Depression. there are complex physiological and emotional processes involved. Symptoms can include: *a low, heavy, miserable feeling *general loss of pleasure in things that used to be enjoyable – often including sexuality and intimacy. * reduced concentration. * hopeless and bleak thoughts. . Some of these reactions are natural responses to chonic illness. But a lot of it may be chemically induced by the treatment meds you’re taking. Remind yourself what the fight is for – to eradicate the virus and regain your health, natural enthusiasm and quality of life. Please follow and read links on managing depression.
PLEASE SEEK IMMEDIATE HELP IF DEPRESSION REACHES POINT OF THOUGHTS OF SUICIDE OR SELF-HARM . THERE IS A WAY THROUGH. ALSO, SEEK SUPPORT IF OTHER FEELINGS, EG ANGER, OR ANXIETY BEGIN TO BE OVERWHELMING - TALK TO HEALTH CARE PROVIDER & FRIENDS / FAMILY. CONSIDER ALSO THE ROLE OF ANTI-DEPRESSANTS IN MANAGING TREATMENT. SEE LINKS BELOW FOR HELPFUL INFO
General notes on emotional well-being and understanding / treating depression. http://helpguide.org/mental/depression_signs_types_diagnosis_treatment.htm
(telephone helpline for mental health issues)
The following links access information on emotional and mental health specifically related to Hepatitis C and Hep C treatment.
(see section 8 – mental and psychiatric symptoms)
IN A SEPARATE POST, PART TWO OF THIS ARTICLE DESCRIBES SOME PATIENTS PERSONAL EXPERIENCES AND DISCUSSES OUTCOMES OF TREATMENT CHOICES AND COMMITMENT