Fuck Cancer

At the end of July, my mum died from cancer – the same kind I had in spring, endometrial adenoma, but where mine was early days and not very aggressive, hers was faster-growing and already in the last stage. It’s currently still being investigated whether there’s a genetic link behind the two of us getting or it was just coincidence. I had some factors that made the development of endometrial cancer more likely, like PCOS and nulliparity, but my mum’s lifetime risk was not elevated. And I already had symptoms in the very beginning, while my mum’s only showed up during her last month and were so unspecific that we all believed she had a stomach bug. There were only eight days between her cancer diagnosis and death, and I don’t want to go into details about her rapid decline because I’ve relived it often enough as it is.
I miss my mum every day. I wish we had more photos together from recent years, or any videos and voice recordings. I wish we’d had more time to say goodbye. More time in general.
Even though I’m doing ok, I wonder if I’ll ever be able to be carefree again. Even the most beautiful days are tinted with melancholia now – an underlying sadness which sometimes morphs into anger. Anger that the world just keeps turning, so oblivious about the fact that my mum’s not here anymore.
What helped me most was that the psychiatrist increased my daily dosage of escitalopram to the therapeutic maximum; by November I’m supposed to go back to my usual dosage. Any other medication I’ve been offered to help me sleep or keep me calm came with too many side effects and wasn’t worth taking. You can’t medicate away grief anyway.

Apart from that, I’m doing well. My own body has recovered and I’m back to pre-surgery levels of fitness now, even though it was only four weeks ago that I last felt the stabbing pain at the surgical sites inside my lower abdomen. They say a hysterectomy takes six to nine months to heal completely, which seems about right to me: surgery was in early March and the last time I felt anything was in early September.
I don’t miss my uterus at all, especially considering I went through over half a year of constant cramping and bleeding in the end. It’s a great relief to not have any of that anymore, and I don’t miss my periods either. For the first weeks post-OP that general region (bladder, intestines etc.) felt somewhat alien, but now I can’t tell any difference compared to before surgery whatsoever. I actually “forget” I had a hysterectomy until something reminds me of it.

I’m still attending aquafit classes, which deserve at least half of the credit for getting me fit again after surgery. (The other half goes to regular walks; without them I wouldn’t have gotten well enough to attend aquafit classes in the first place.) They are also really helpful for my mental health.
My weight is around 93.5 kg or 206 lbs right now. The week my mum died, I was actually down to 92.2 kg, but anything I lost due to grief came back on later. This month marks the first anniversary of my diabetes diagnosis, and during the past year I lost 10.5 kg (23 lbs) of fat and gained 4 kg (8.8 lbs) of muscle, so I’m a lot healthier now.
My milestone-targets are still in place: first get under 200 lbs, then get under 90 kg, then get to a bmi under 30, which for me would be at a weight lower than 88 kg.
Bloodsugar management is going ok. In fact, I think it’s the metformin which allows me to slowly lose weight. I have to be careful to not stray from my eating schedule too much or the metformin will give me the worst diarrhea imaginable. Seriously, my lactose intolerance problems, while more painful, appear like a joke compared to metformin shits. Which is the reason why my biggest weightloss goal is not reaching a certain number on the scale, but being able to at least reduce my metformin dosage if I can’t get off it completely.

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Mass Shootings, The Media, And Mental Health

Dear media,

Like so many others, I have been following the events of Munich’s mass shooting on Friday night. Like others, I want answers. The answer cannot be, however, to publish psychiatric diagnoses without further comment or explanation by professionals.

You see, I happen to suffer from the same mental health problems which are now being shoved into the limelight as the Munich shooter’s conditions, depression and social phobia, so I might be more sensitive in that regard than your average person. But it is extremely unlikely for depression or social phobia to result in the desire to go on mass killing sprees – harming other people doesn’t even feature in the diagnostic criteria.

What you are doing is publicising facts which may have contributed very little to nothing to the crime at the cost of increasing the stigma for millions of people suffering from depression and / or social phobia in Germany alone. You are making life harder for all of us who are already receiving psychiatric or psychological help, and you are potentially discouraging others from seeking treatment because they don’t want to be regarded as a “loose cannon” or threat to society.

Next time, please consult professionals and add their opinion before releasing your findings. Instead of trying to be the fastest to get information out, how about striving to be the one who gets the best information out?

Medical Service Appointment

The worst part is over now that the appointment with the medical service is behind me. It went by no means great, but at least I did not cry afterwards like last time.

The physician took a little more time to ask questions, about 15 minutes, which was the one positive aspect of the appointment. On the negative side weighs in that she tried putting phrases in my mouth that I didn’t mean to say, kept interrupting me, and generally had a brash demeanour.

I wasn’t feeling my best to begin with: slept badly the night before because of anxiety about the appointment; kept confusing words; couldn’t remember which dosage of escitalopram I take, etc. And the doctor’s behaviour made everything even worse.

For example, I had tried to explain why I had not gone back to psychotherapy – that I want(ed) to, but for reasons already discussed on this blog haven’t. She tried to twist it into me saying that because I’d had such a positive experience with my first therapy, I was resisting seeing someone else now and idealising the first treatment. Absolutely not true. If health insurance wouldn’t limit the number of sessions I could have, I’d be way more willing to try things out. And even if, ultimately it was my psychiatrist who suggested to wait with that – and she knows me a helluva lot better than someone who judges me based on a 15-minute-meeting.

The doctor also had never heard of CBASP and when I said that the general consensus is that chronic depression is largely treatment-resistant with standard behavioural therapy, she called bullshit. Whatever, I don’t really care. It’s what the scientific papers say, not my personal opinion. Not trying to convert anyone, least of all her.

Also, she said I was “talking in diagnoses”, not how I felt. Well, last time I tried that with her colleague, he wouldn’t even let me finish. Also, it’s really hard for me to open up to strangers about such personal stuff. There’s a reason why my therapy sessions worked out so well, and that is that he took the time to make me comfortable. I realise the medical service was never meant for that kind of in-depth, trust-gaining discussion, but I had told her half a minute earlier that I suffered from social anxiety, and how at uni I would devote 75% of my energy to not freaking out and 25% to following lectures. It’s kind of a low blow to hold “talking diagnoses” against me after I just divulged that strangers freak me out.

Seven hours since I got out of there, and the knot of anxiety in my stomach only slowly starts dissolving.

Jobcenter Updates

The jobcenter sent us two forms as part of a „hearing“ regarding why they paid us too much money. Two separately mailed letters containing the exact same forms and the exact same letters, except that one was addressing my husband with “you earned income” and my letter read “Mr. Layara earned income”. So I explained for the fourth and fifth time respectively in those forms that the jobcenter pays in advance, but my husband’s salary only comes in about six weeks later since he gets paid retroactively the following month. I also asked for our monthly allowance to be reduced, to avoid having to transfer back hundreds of euros later on. We’ll see how that goes.

Tomorrow, I have an appointment with the medical service to assess my mental health. Last time was pretty bad; my one comfort is that with just a few more months to, the result of tomorrow’s appointment will only matter short-term. I was supposed to bring ALL my files from various doctors, but they gave too short notice of the appointment to get anything from the psychiatrist, and anything from the clinic / therapy is not available as it is part of a medical study and thus confidential. For the latter I still have a statement written by my therapist from the last time I had to see the medical service.
Also, I need to bring all the medication I take. Not sure why – to prove that I’m not making anything up? Shouldn’t they already have my medical records on that from the psychiatrist? And how would showing them a bunch of blisters prove I am actually taking that stuff? Seems rather stupid to me.

On Tuesday I have an appointment with my caseworker at the jobcenter. I am not sure whether I mentioned that before, but we got a new caseworker a year ago. She is nice enough, but I miss the old one. She was bipolar, so actually understood how mental health problems can influence your everyday life. Also, she would get in contact before setting the actual appointment. They don’t have to do any of that, but it was a courtesy she extended to me that made me feel as if they took me into account as a human being, not just a file that needs to be processed.

To say that I am afraid of the appointments would be overstating it, but they make me terribly nervous. I feel pressured, and “faulty” to boot. I understand that the state needs to check who they give money to, but this arrangement is not contributing to my recovery.

Signed Up For Aquafitness

I’m not a “sporty” person, quite the opposite: about 50 pounds overweight – not morbidly obese (anymore), but in the area where my weight will most likely lead to health problems down the road. The last big check-up was five years ago when I applied for the clinical study. Back then I was physically healthy, but I am aware that it doesn’t take much to change that.

Since November 2014, I lost 8 kg/ 18 lbs. Not through dieting, because going on a diet flips some kind of switch in my brain which causes me to think about nothing but food all day long. Instead, I practice moderation, and thanks to the escitalopram, I am a little more active than I used to be. It’s a slow process, just a pound lost per month on average, but it’s trending towards the right direction.

My all-time maximum weight I had in 2003, when I was 17 kg / 37 lbs heavier than today. It was mostly due to the untreated hypothyroidism that I gained that much, but if I thought taking the appropriate medication would melt the fat away, I was mistaken. Even during my most active times, I would shed the pounds very slowly only.

A few weeks ago, I decided to sign up for an aquafit course – one especially for overweight and/or unfit people. Even though I loved the Tae Bo class, it was so physically demanding that I don’t think I’d be able to do it anymore, and even at the best of times it made me very self-conscious about my body, because the rest of the people were really toned… That definitely shouldn’t be a problem anymore.

Even though I talked a lot about weight, losing it is not my main motivation: I want to be healthy. At almost 36 years old, it is for the first time ever that I feel like my body might fail me if I do not take care of it. I don’t want to get rid of the physical symptoms of depression just to suffer from the side-effects of ill health. Thanks to Facebook I know that somebody I went to school with suffered two heart attacks last year, and even though his lifestyle was a lot unhealthier than mine, I don’t want to be next in line.

Apart from the physical benefits, I also hope for a positive effect on my mental health. I do not believe that an active lifestyle can prevent depression – it was from my most active period ever that I crashed into one of the bleakest phases of my life, and there are too many amateur and professional athletes suffering from it – but that it can help prevent a rebound. Especially since the biggest anxiety factor (being the only fat person among a group of slim people) is being eliminated.

Class starts the first week of April; just an hour once a week. Not a massive programme, but it’s one hour less of sitting on my butt.

How Welfare Saved My Sanity

One of the biggest contributing factors towards my mental health improvement was getting on welfare. Or rather, not having to worry about how we’d be paying all those bills and the rent. There’s a lot to be said for financial stability, even if it is only the state-defined minimum. No more letters threatening to turn off the gas or electricity, no more anxiety attacks when checking the mailbox.

The public image of welfare-recipients in Germany is just as bad as it is elsewhere, but I learned long ago to tune such things out. Most of those who are judgemental don’t really know what they are talking about – and they certainly don’t know my husband or me.

And it looks like our “leeching off the system” is coming to end. My husband landed a respectable full-time job a few weeks ago which should see us completely independent of state support by the end of the year. I had paid off my old bank account within a year and thus by summer my name should get deleted off the “financial offender” list and my credit rating be ok again.

What the occupational future holds for me, I don’t know. Right now, my husband is the breadwinner, and I do all the paperwork that comes with his job. I don’t plan any further than six to nine months ahead anymore – none of the long-term plans and goals I held in the past came to fruition. I’ll deal with that topic once I actually become capable of holding down a (part-time) job.

I will forever be grateful to be living in a country where a welfare-system even exists. It wasn’t always easy – you sign away a lot of privacy and become the employment agency’s little bitch in exchange – but that is a thousand times better than what we went through before.

The relationship with my mother has gotten a lot better once it was not strained by financial dependency anymore, too. There are different factors playing into this other than money, since her hospital stay very much became a game changer that altered the way we interact, but there is no denying that money used to be a contributing factor to the tension between us.

The Year Wasted On Venlafaxine

The venlafaxine debacle certainly deserves more attention than just the few lines I’ve allotted to it so far.

The first few days have been chronicled by this blog, but fact is that the side-effects never got significantly better. Nausea, headaches, muscle pain, and paraesthesia became my steady companions. Very often, it made me so sick that I had to lie down two or three times during the day. At every appointment I told the psychiatrist about it: he would either dismiss my complaints as “I’ve never heard about anyone having this problem with venlafaxine before”, or claim that those were not side-effects, but withdrawal symptoms because my dosage was still too low to last all day.

About fifteen months down the road, he finally cranked the dosage up – and that is where the heart problems started. Actually, I was in the early stages of serotonin syndrome, and it felt like I was on the verge of a heart attack. Before the next appointment was up, I had to lower my dosage again without even consulting him, because I just could not take it anymore. Finally he decided that maybe venlafaxine wasn’t for me and that I should try escitalopram instead.

The idea was that I would reduce venlafaxine over the course of three weeks and then start escitalopram. The withdrawal was so terrible that even though I gave myself six weeks instead, I still became bed-ridden. Other than expected, the most difficult part was not when I first started lowering the dosage, but the second to last step, which made me hallucinate.

Imagine lying in bed, sweating, your heart beating fast. Your head hurts, your teeth hurt, your back, your legs… every single muscle is in pain. Lights are too bright, sounds too loud, everything you eat makes you queasy. Your thoughts race and you cannot do anything to calm them down. And just when you think it cannot possibly get worse, you start hallucinating that the walls of your bedroom, the furniture around you, the ceiling above you are pulsating, bending in and out as if they are breathing.
I knew it was the withdrawal – that it wasn’t real – but that didn’t make it any less unpleasant. I cried like a little child: “I want it to stop! I can’t take it anymore!”

I do not want to badmouth venlafaxine, since there are many people who take it with few or no problems. I wasn’t one of them. By now, I am aware that I have problems with every drug that influences the noradrenaline (norepinephrine) cycle; that I am genetically predisposed to react that heavily to them.

However, I harbour resentments against the psychiatrist for letting me go through this for such a long time. He was friendly, but I feel like he did not take me or my complaints seriously – whatever it was, you don’t drag out a treatment that doesn’t help and causes so many problems for a year and a half. And I was too afraid that I wouldn’t get my sick note for the jobcenter if I complained too much, so I didn’t dare protesting too loudly. Even when giving the drug the benefit of the doubt, he should have stopped after six month. Instead, I wasted a whole year of my life on top of that trial period.

Coincidentally, just as I made the transition from venlafaxine to escitalopram, the practice was also taken over by a new psychiatrist. The options were to either stay at the old location and get a new caregiver, or migrate to the new location and stay with the old psychiatrist. I chose the former, and have been very happy since with the lady who took over. She’s friendly, competent, seems to genuinely care about her patients, and I find it easier to talk to her than her predecessor.

Escitalopram is a walk in the park in comparison. It really helps with the anxiety, and also has reduced the depression by 80%. What was left fell into three categories:
– problems falling / staying asleep
– lack of energy
– lack of motivation.

The psychiatrist’s suggestion was to try a second antidepressant as a booster. Initially I was very hesitant to even consider this option, because I did not want to go through an ordeal like the venlafaxine-regimen again. She promised that if it didn’t work, I could stop any time, and so I started with bupropion – which is how we discovered that I cannot take any SNRIs. It basically felt like a toned-down variety of venlafaxine to me. After three weeks I stopped.

The second booster I tried is valdoxan (agomelatine), which comes with zero side-effects. It’s slower to show results than other antidepressants I’ve taken, but after five months and experimenting with the dosage there is a definite positive trend: fewer days with sleeping problems, gradually increasing productivity, more motivation. There’s still room for improvement, but I am feeling better than I have in over a decade.

This Blog Is Still Relevant

Last night, I did something I had never done before: I read my own blog. During the past weeks, I had been wondering whether it was worth keeping “Lugubrious Layara” online – after all, I had not published regular updates in almost three years, and it did not seem to serve a purpose anymore.

But as I worked backwards through my own timeline, from the most recent post to the earliest ones, I realized how important this blog was for myself. Not only as a chronicle, but especially as a measurement tool for how far I have come since.

And that is why I need to keep writing and updating. I probably will never be able to close the gaps, but at the very least, I can make a fresh start right here and now.

To Hell And Back Again

After the last post, I fell into a really dark hole. For every problem solved there appeared to arise two new ones, and between a lack of energy (which was bordering on apathy) and near-despair, I had some really horrible weeks. None of the bills due June had yet been paid, and I’d really had more than enough of those troubles over the last months: we got threatened with having the gas / electricity switched off twice and had to borrow money from a friend to pay those bills. I had my bank account terminated because I accidentally went over the credit limit and (thanks to being preoccupied with the side-effects of venlafaxine) didn’t notice immediately, so I ended up being blacklisted as a “financial offender” for the next three years – it will be as good as impossible to get any kind of loan, and I had to go begging at the bank to be granted another bank account, and on top of everything else I will have to pay off almost 1250.- Euros for the old account and in penalty fees. I tried explaining my situation on the phone, but first I had to wait three weeks for a call-back since the people holding the decision power were always busy, and when they finally did get back at me, the lady berated me for it “being all my fault”.
We just about managed to pay for my husband’s German classes and get some food on the table, even though the latter was perilously close to uncertainty at two times at least. There was one day when we had all but € 9.- between the two of us, and all that was left to eat was a bit of frozen vegetables, half a jar of jam, pasta and potatoes. No bread, fruit, rice, cheese, meat, fish, butter, milk or soy drink or whatever we usually eat. Our options were plain potatoes or plain pasta, with a bit of spinach or peas. Nothing you’d traditionally serve for breakfast – and having just asked a friend to help us out with money so we wouldn’t have the gas / electricity cut off, I didn’t want to go begging again. My mother-in-law unwittingly saved us from this by sending some money, and my friend scolded me for not telling her earlier when I related the story to her… All I can say is that there’s a difference between having to ask for help once, because you got into a tight spot, and having to do it again and again, week after week or month after month. It wears you out mentally.
I believe my husband became more worried about me and my state of mind than about the money, because even though I was not entertaining thoughts of suicide, he made me promise I wouldn’t do anything to myself. Nevertheless, even getting dressed became an almost insurmountable obstacle, and I oscillated between apathy and fits of crying. I felt like I had nothing left in me: no energy, no fight, no will. And even though I had successfully fought off the denial of the application in April, nothing appeared to move forward in that regard ever since – until the beginning of June.

The money came in about three weeks ago, and despite the fact that we didn’t get approved for March (when I was still officially a university student and not available for welfare), we got monthly allowances retroactively from April 1st on. We could pay our bills, and get rid of the debts with the health insurance and the energy provider. I made a payment plan with the collection agency to pay off my old bank account in rates, paid off my sister since she had covered the contents insurance of our worldly possessions earlier this year, and gave two months’ worth of rent to my mother, as a thank you for supporting us when my parents were on a budget themselves.
Having this existential problem lifted off our shoulders has done more for my mental health than any other measure taken during the last months. For the first time in years, I go to bed without being afraid of what the next day is going to bring: even though I still get a fright when one of those “official-looking” letters comes in, I can immediately remind myself that we have the money to take care of whatever is heading our way.
The German welfare system is far from perfect and much criticized, but compared to our situation during the last year – and especially the last couple of months – we are doing peachy right now. Of course, we are not eating steak and lobster, but I can buy everything we need and some more, whereas before I would have to prioritize and calculate whether I had enough money to buy some yoghurt, for example, or whether it had to wait until the next time since it was not strictly necessary.
There was one day when I went to the neighbouring town for shopping, since the local supermarket had some offers which justified spending money on a tram ticket as we would still save compared to buying the same products in our hometown – and I made a mistake when calculating the expense. It was just a minor figure I was off, about 50 cents, but I ended up those 50 cents short for buying the tram ticket back home. I did not dare taking the tram without a valid ticket because of the € 60.- fine if I got caught, so I had no choice but walking home. It was a relatively warm day and I was dragging / carrying about 30 kg (roughly 65 pounds) of bottles and groceries in my shopping trolley and two bags. I had called my husband to meet me halfway, but by the time we got home, I was completely exhausted.
That is only one story out of many about how destitute we were. I walked around in jeans ripped from wear and tear for over a month, because I could not find a pair cheap enough in my size. When I finally found one, it had a bad, unflattering cut and I didn’t like the colour, but at least the prize was very low and the fabric not torn, so I bought it anyway. After just a few short weeks, the pull tab of the zipper broke – cheap material, I guess – so I had to put a safety-pin through the eye of the slider for using the zipper: the result was that every time I went to the toilet or got (un-)dressed, the safety-pin popped open and stung me in the finger. At that point, I made such a pitiful figure that my mother and sister gave me a part of my birthday present, two pairs of jeans, about ten days early.

Maybe that gives a little insight into why I have not been blogging. At some point, I just got too exhausted – all my mental energy went into making sure we would get on state support. And I wanted to escape from the daily struggles, not reflect on them.

Follow-Up With The Psychiatrist

This morning I saw the psychiatrist again. We discussed the side-effects and agreed that I would continue taking venlafaxine / effexor, as it appears to have some mildly mood-stabilizing effects on me by now, and that I’m going to stay on this dosage until my next appointment at the end of May. Since it’s been only two weeks on 75 mg so far, it might take more time to make the side-effects go away completely: my main complaint was that I felt even more tired than before, but since citalopram had that same effect, switching to another drug does not seem worth it as chances are that I react this way to all antidepressants.

The psychiatrist asked me how I felt on a scale of 1 – 10, with 10 being absolutely awesome, and I rated myself a 3, even though I had to think about it quite a bit. That rating was more influenced by my physical complaints, and by feeling exhausted and stressed out about the welfare process; otherwise I would have given myself a 4. The goal for now is to make me reach 5 – 6 on this scale, and he asked me what had to change for me to feel that way, which I answered with: “I’d need more energy to actually manage my daily responsibilities sufficiently to feel that way.”

I told him about the recent problems with the job centre and the energy provider, and he was so nice to give me the medication I need until my next appointment out of the stock at his practice, so that I would be relieved from the self-pay contribution necessary at the pharmacy. (One of the benefits of welfare is that it eliminates the self-pay contribution for medication, but right now that obviously doesn’t apply yet.)
He also gave me an incapacity certificate valid until the end of May for the job centre, and I will see him again right before this one runs out. That is important both for proving that I am actually unable to work, and so the job centre can’t put me into an apprenticeship programme – if you cannot prove you are incapacitated, they can take away your benefits if you don’t comply with their orders, or they won’t even let you get on welfare in the first place.