Tag Archives: depression

Changing the rhetoric

Since the release of the exceptional docu-film Unrest by Jen Brea it feels like there has been a sea-change in the way the world views M.E.  It’s been a very, very long time coming and I’m trying to be optimistic and excited about our future but if I’m honest I’m still worried.  Worried that we, the patients, are staying buried in our past and not allowing ourselves to move on from the pain and anger of our disease’s history, understandable and justifiable as it may be (trust me when I say that there’s no-one more angry than me at being told I might die from a disease deemed to be “all in my head” and then left to live alone with it for the next 25 years without treatment, health or social care).

Every single article, interview or news piece done on M.E. says something like “M.E. which used to be called Yuppie Flu” or “M.E., which some doctors don’t believe exists” or “M.E. which some people think is just laziness” and it’s driving me insane, as well as killing the momentum we’ve spent 50 years building.

Yes, a proportion of young, upwardly mobile professionals developed M.E. in the late 1980s and because they were intelligent, confident, articulate adults and spoke out in the media  their voice became synonymous with the disease, but let’s remember there were tens of thousands of poor people getting M.E. too who the media ignored and when Thatcherism faded in the 1990s Bollinger, shoulder pads and the Yuppies faded alongside her.  Enough with the quarter-of-a-century-old Yuppie Flu references which were completely eroneous to start with.  The next time anyone in the M.E. world is asked to do an interview  they should only agree so long as that skewed rubbish is never mentioned.

The same principle applies to depression, laziness or anything to do with psychology.  The World Health Organization classifies M.E. as a neurological disease and that is the end of that.  Every time a journalist, interviewer or article makes mention of depression or disbelief it only serves to re-enforce both concepts.  You can almost hear the reader or viewer thinking there’s no smoke without fire, so let’s put the damned fire out.  Let’s only agree to do interviews with the promise beforehand that no mention is made of depression, psychology, “tiredness” or laziness because we all know that these issues have nothing whatsoever to do with our illness.   Even if having M.E. has made you depressed (and why wouldn’t it, I know it has me at times) let’s not mention it, because the second we do it becomes the hook on which our disease is hung.

We need to move forward now.  We need to stop yakking about Yuppies and disbelieving Doctors and instead change the rhetoric.  Re-enforce the fact that M.E. has nothing to do with being “tired” and everything to do with being ill.  Make mention of the brilliant global research which is finding all sorts of abnormalities.  Stop the emphasis on chronic fatigue and put it back on Post Exertional Malaise where it belongs, and tell the world the reality of living with this devastating, life altering disease – the vomiting, seizures, crawling up the stairs on all fours, lying in darkened rooms, fiery pain, dementia-like brain fog and catastrophic malfunctioning of every organ the body possesses to the point where you actually fear you’re going to die.

Let’s all refuse to re-enforce the lies and instead speak only our truth.

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Avoiding The Pit

I am prone to clinical depression.  I had a chaotic childhood which predisposed me to mental health problems.  I have mast cell disease which definitely affects my moods and depression runs in my maternal family, in my Aunt’s case so severely she had electric shock therapy (which BTW doesn’t work).  My Mum has suffered from depression my whole life and I have three female cousins who turned 50 this year and all have suffered from depression for as long as I can remember, albeit at various levels.

I was clinically depressed during my teenage years and half-heartedly attempted to take an overdose.  I was definitely depressed when I got divorced, though it wasn’t clinical depression.  And I have had one serious depressive (actually more bipolar) episode since I became ill, though I think that was mast cell related because it was totally out of my control and felt more biochemical than emotional.  So when I talk about depression I do have some experience of the condition.

But I am not a victim of depression.  I bloody well refuse to be.  I have watched my Mum suffer from the disease my whole life and do absolutely nothing about it.  Being miserable seems to be a familiar comfort blanket and certainly not something she seems to want to change.  I simply don’t get that.  I only have one life and I’m damned if I’m spending it moping around and bringing everyone around me down.  I’m acutely aware I have a tendency towards depression and am as proactive about that as I am about my physical health.

So how do I go about avoiding the pit of depression?

  • Acceptance.  We can’t change the past and, in my case, I can’t change the present either – I’m never going to be healthy again a day in my life and there is nothing I can do about that.  So I accept it just like I accept the weather outside my window and I live as full a life as I can despite it.  When I was bedridden and suffering the tortures of hell it was impossible to be “happy” but I learned to be accepting, which gave me peace.
  • Purpose.  We all need a purpose in life or there’s no reason to get out of bed in the morning, especially when that involves pain and illness.  My little rescue dog gives me that purpose.  Regardless how I’m feeling he’s awake at 6am and demanding to be fed.  He then wants a tummy rub, his morning walk (paid for by me), his feet wiped, his Dentastix for lunch, another walk, more feet wiping, his tea and a bedtime cuddle.  My reward for all that hard work (and, oh boy, is it hard work) is completely unconditional love and a furry bundle that makes me smile every day of my life.
  • Passion.  I honestly don’t know how I’d get through without my photography.  It gives me a goal, pleasure, forces me to get out in the world, mingle with other people and forget about my health for an hour or two.  The editing side of photography is something I can do in bed, picking it up and putting it down again when my health and energy wax and wane.  I simply love it.
  • Distraction.  Due to all the resting I have to do my mind has a lot of time to think and not all my thoughts are helpful, so I have to find ways of switching them off.  I watch far too much TV, even having it on in the background when I’m cooking or doing chores, so that my brain is distracted from dwelling on the negative.  I listen to loads of talking books which I download free from the Library.  I have them on when I’m out with Bertie, driving the car or lying in the bath – in fact any time I am relaxed, because I don’t want to give my mind too much space to think about stuff which only makes me sad, angry or frustrated.  I even listen to a talking book as I drop off to sleep or wake in the night, so that my brain has something to focus on other than how crap I feel.
  • Gratitude.  I know this is an Oprah cliché but for me if I start focusing on all the things I don’t have or can’t do my mood nosedives, so when I find that happening I make a conscious choice to be grateful instead.  I had my Christmas groceries delivered yesterday and as I was huffing and puffing and moaning to myself about having to put it all away (my back, neck and arm are still really painful) I stopped in my tracks, called myself an ungrateful cow and started thinking instead about how lucky I was to have all this beautiful food and a clean, safe home in which to eat it.  And then I spent a cosy hour on the couch stuffing my face with Pringles and watching Eastenders.  Bliss, although my waistline will never forgive me 😉
  • Setting myself up for success.  My whole life I’ve attracted people with issues who want to offload their crap on to me.  Which is fine – we all have problems now and again and need someone who can empathise, but I began to realize that these people’s problems were never resolved. They were emotional vampires, sucking the very life out of me in order to raise themselves up and they had to go.  Which is why I feel so trapped in the situation with my Mum because if she were anyone else in the world I would have dumped her ages ago.  I only want to be around people who make me feel joyful, happy, supported, encouraged and understood and the relationship has to be a two way street – gone are the days where my friends and  family do all the taking and none of the giving.

I also avoid negative information.  I catch the news headlines so that I know basically what’s happening in the world and then I switch channels.  There is nothing whatsoever that I can do about the situation in Syria, Brexit or the fact that 6 people were killed on the motorway this morning and hearing about it can make me feel emotional, so I don’t listen.  I don’t embark in heated discussions online because I find it stressful and you can guarantee someone will lose their cool and start being nasty which I don’t need.  I try my level best not to take on the weight of the world because my shoulders simply aren’t wide enough.

  • I put in the work.  I’m sure some people are born with a sunny disposition and nothing gets them down but I sure as hell wasn’t.  For me, happiness takes work and it’s something I aim for each and every day.  If you’re predisposed towards depression you have to make an effort to not be depressed.  And it is an effort, especially when you’re already feeling ill and exhausted.  But the good news is the more you practice happiness the easier it becomes, whatever life chucks your way.

A little perspective

As outlined in this post I’ve arranged to see a Counsellor next week for a free assessment to see if she can help me find ways of dealing with my Mum.   I find blogging about my relationship with my Mum really difficult – I tend to vent when I’m having a bad day or am frustrated with her, which gives you all a skewed view of how I truly feel or the complex nearly 50 year history we share, so while I’m not hormonal and not angry with her I thought I’d put our story into a bit of perspective.

My Mum was a wonderful parent when I was little.  She has always been incredibly maternal and I was never short of attention or affection.  She lived for her kids and I always I knew I wasn’t just loved, I was adored.  I was told I was clever and beautiful and never kept short of praise.

But my Mum does have depression.  It runs in her family, with one of her brothers and one of her sisters also suffering.  Her sister was so severe she had to have electric shock therapy.  Yet they had a really happy, if poor, childhood and no reason could be found for Mum’s depression or that of her siblings.  Now I know what I know, in particular that Mum has Mast Cell Disease caused by her faulty EDS genes, you have to wonder how much of that comes into play – I know my chronic mild depression has definitely eased since I started treating my MCAD.

Living with depression isn’t easy for the sufferer and my Mum struggles with it.  When she left my biological Dad in the 1970s anti-depressants hadn’t been invented so people with depression were given benzodiazepines, to which Mum (along with hundreds of thousands of other people at that time) became addicted.  She did get off them, but it can’t have been easy (I was only 7 at the time so knew nothing about all this until I was an adult).  She did go through a period after her divorce of drinking too much, but did eventually rain this in.  She is not a lifelong alcoholic.

She has not had a happy second marriage – I’ve no idea how both of them have stood each other for 40 years.  I think my Mum’s felt lonely her whole life and, coupled with the depression, has been desperately unhappy.  When I’m having a bad day I get really frustrated that she hasn’t asked for help, sought counselling, done volunteer work, made an effort to make more friends etc. but then I don’t walk in her shoes – we’re not the same people and have very different personalities and ways of coping.

While Mum was working and raising a family it kept her busy and she managed her depression, but this all changed after I (the last child) left home and Mum retired.  She then lost her 2 closest friends, and then both of her sisters and I think the loneliness just became too much and her depression spiralled.  Add to this her increasingly poor health and the last 10 years in particular have seen her basically go under.

Her alcoholism started 5 years ago after her lung surgery.  She’s been on antidepressants for 20 years now, but really needed more help than just popping a few pills.  She needed someone to talk to, but is a very private person so would never have requested to see a therapist or gone if I’d arranged it.   Which makes me frustrated as hell.

She isn’t some awful abusive monster.  Well, actually she is these days…..but it hasn’t always been that way.  I feel very sad for her for the most part – she’s never been happy, she basically lost her first born child and didn’t have any contact with him for 30 years (very long story, not my Mum’s fault in any way) and has always been fundamentally lonely.  However, knowing all that in my head doesn’t make my heart any the less hurt now she’s an alcoholic and behaves in ways that I don’t even recognise.  She’s no longer my Mum.  She’s selfish and self-absorbed.  She’s a bully and can be nasty.  She is disinterested in life.  She is confused and forgetful.  I can no longer have the conversations we used to have.  I no longer tell her my news.  I don’t have her to lean on or share my problems with.  She is absoluely emotionally unavailable.  And it breaks my heart.

And that heartbreak is what you read here on my blog.  You don’t read about how supportive she has always been of me, particularly when I was very ill with M.E.  You don’t read about how she’s always financially helped me out.  You don’t read about the fact she never missed a single thing I did at school, or how she taught me to drive, or how she helped get my first boyfriend a job, or how she let my friend stay with us when she was having problems getting on with her Dad.  Or any of the other ways in which she’s been a great Mum.  She’s not been perfect by a long chalk, but then she’s had mental health issues her whole life and, as a grown-up, I know how hard that must have been (which doesn’t negate the affect her depression had on me).

This blog exists for me to rant about stuff I don’t feel I can rant about in real life, and for the most part it’s been helpful in that respect.  If I snapped at my Mum every time I felt like snapping at my Mum we would have stopped speaking years ago, so letting off steam through my blog helps me maintain a relationship with my Mum despite very difficult circumstances.  However, if blogging has taught me anything it’s not to make snap judgements about people or their situations.  Relationships are complex things, particularly between a parent and child, and you’re not going to get the nuances of a 49 year history through a couple of ranty blog posts when I’m exhausted, hormonal, having a shit day and am at the end of my tether.

My Mum is 76 years old and slowly dying.  She’s not going to change now.   She’s not going to leave my step-Dad and she’s now not well enough to get out to do anything or meet new people (even if she wanted to, which she doesn’t).  She doesn’t want to stop drinking and her depression has gone largely untreated her entire adult life.  The only thing which is going to change is my attitude, which is what I’m hoping to achieve through the Counselling – looking at ways to help me cope with the final few years of my Mum’s life.  I don’t want my entire 50 year relationship with her to be defined by the last 10 years of her life and I don’t want her to die with me hating or resenting her, forgetting all the love and friendship we used to share.

 

Counselling

After the tiff with my Mother the other day I was pretty upset.  My period is due, I feel like crap both physically and emotionally, and am really struggling with her alcoholism.  I googled help for families of alcoholics and could find nothing other than Al Anon (there was legions of help for the actual alcoholic though, which is great but it’s not the alcoholic who has to live with the fallout from their disease, it’s the people around them – the alcoholic is so high most of the time their life is just a blur).  However, the nearest Al Anon meeting is an hour’s drive away and I’m not well enough to do that every week.

So, I’m considering some counselling.  I want to choose someone in the next town though, as I don’t want to see someone locally only to bump into them in the supermarket knowing they know every intimate detail about my life.  There is a counsellor who used to work at the local Hospice who looks well qualified and experienced, but I don’t know whether I need a Psychologist rather than “just” a Counsellor.  My history goes something like this:

  • Perfect childhood until the age of 7 when my Mum left my Dad out of the blue.
  • Taken away from everything and everyone I knew, moved 200 miles to live with a grandparent who used to hit me.  Mum was clinically depressed, drank too much and was addicted to prescription Valium.  Moved 9 times in the next 2 years, couch surfing with various relatives.
  • Started being bullied at school, which went on for the next 10 years.
  • Mum met and married my step-dad but their relationship was volatile from the start, including daily rows and the odd plate throwing.  I never knew what the atmosphere at home would be like from one day to the next.  This was all kept a secret though and to the outside world my parents were really nice – my school friends were all jealous that I had such a “lovely Mum”.
  • Repeatedly sexually assaulted by my step-brother aged 9-10.
  • Sexually assaulted at the age of 11 by a neighbour.
  • Became clinically depressed around the age of 13 but this wasn’t recognized in children in those days.  Woke every day for 4 years wishing I were dead.
  • My saving grace was my boyfriend, who was three years older than me.  We were together for 4 years until he dumped me on New Year’s Eve when I had just turned 17 – turned out he was seeing someone else.
  • Had a mini-breakdown aged 18 and dropped out of school.  Spent 9 months barely leaving the house – put on antidepressants and saw a Clinical Psychologist for a year who was really helpful.
  • Met my future husband aged 19.  He was dominating and critical, just like my biological dad.  Married at the age of 21 and my husband became much more controlling and mentally abuse, eventually alienating me from my family and friends.  Thankfully I came to my senses and divorced him.
  • Went to work abroad aged 23, which is where I caught the virus which lead to my M.E.
  • Came home and met my next boyfriend, who was lovely in most respects other than he flirted with anything with a pulse and was highly critical of my appearance – which did nothing for my self-esteem.
  • Developed ME aged 26 and spent the next 10 years bedridden and alone.  Boyfriend was dumped as he couldn’t cope with me being sick.
  • Lived alone for the next 20 years.
  • After going through the Menopause, my Mum became increasingly verbally abusive to my Dad and a very angry person (though she hid this behaviour in public and I was still constantly told how lucky I was to have such a lovely Mum).  Our previously close relationship started to deteriorate.
  • Just as my ME was starting to improve, my Ehlers-Danlos and Mast Cell Disease kicked off.  Yay.
  • Mum had lung surgery in 2011.  She had to give up her 20 a day cigarette habit so took to drinking instead, along with taking 16 prescription drugs a day.
  • She then had a heart attack in 2013 and now needs constant care, provided solely by me and my Dad.
  • Dad recently diagnosed with Dementia.
  • I’m now in peri-menopause and finding it hard to cope with my hormones, health, Dad’s Dementia and Mum’s health and alcoholism.

I know there are people who have lives much worse than mine, and I do my best to just get on with it and not wallow in self pity, but even I have to admit there are times I struggle and I think I need the perspective of a trained Counsellor to help me navigate the next few years.  Waking up in the morning and actually wishing your parent would hurry up and die so you didn’t have to cope with their crap any more is not good.  Therapy is expensive though and at £35 a session I can probably only afford to see a Counsellor twice a month, which isn’t ideal.

I still can’t decide whether to see a Psychologist or a Counsellor.  Counsellors have a tendency to listen then just repeat your problems back to you in the hopes you’ll find your own solution, which isn’t what I need.  But I still think the Counsellor who used to work at the Hospice would be good to see, as I know I’m already grieving for my Mum (despite the fact she’s still alive) plus obviously I have my own health problems which this particular Counsellor would be used to dealing with.  She offers a free first consultation, so maybe I’ll go along for that and see if we click.  She also does telephone appts which is great and means I don’t have to travel to see her if I’m not well enough on a particular day.

I recognise that my life is challenging and that I’m struggling.  Reaching out for help is important and the Psychologist I saw when I was 18 turned my life around.  I don’t want to become depressed again and need some new coping skills and ways of navigating the caring role I now face with my parents (which I’m finding difficult when I spend days basically hating my Mother).  I’ll let you know how I get on.

‘Psychiatric’ symptoms

To me, the word psychiatric conjours up emotional or behaviour problems.  For example, depression, anxiety, euphoria or behaviours seen in illnesses like schizophrenia where the sufferer hears voices or has uncontrollable rage.  However, in the medical profession the term psychiatric seems to encompass much broader symptoms eg. sleep disturbance, stammer, and cognitive issues such as problems with word finding or memory.  It’s always amazed me that sleep disturbance is seen as a mental health problem – your kidneys can go wrong, your digestive system can go wrong, yet the proufoundly complicated mechanism which renders us unconscious for large parts of the day isn’t allowed to and if it does go wrong it’s put down to stress or worry.  Bullshit!  The same applies to symptoms such as stammer.  I developed a stammer when I had very severe M.E. which, as I recovered, disappeared.  To me, these symptoms are neurological not psychiatric, so I’m not going to cover them in this post, and will concentrate more on emotional issues.

M.E.

ME is a neuro-immune disease, and like similar diseases such as Multiple Sclerosis, ’emotional lability’ is listed as a symptom.  We don’t really understand how our emotions work, but it’s obvious that, although driven mostly by environmental factors such as grief, stress, getting upset due to an argument etc, they are also affected by non-environmental factors such as hormones and neurotransmitters.  I spent most of yesterday on the verge of tears purely because I was ovulating and am totally back to normal (whatever that means 😉 ) this morning!

I’ve suffered quite profoundly with emotional lability since developing M.E. and, for me, this symptom is influenced by activity and being ‘over-tired’.  On the rare occasions I go out for the whole day it will get to about 3pm and I start to feel really emotional.  It’s incredibly hard to explain, but I feel like I’m sobbing hysterically on the inside yet on the outside I appear perfectly normal.  My head starts repeating the words “I’m tiredddddd!” over and over in a whiny voice and I honestly feel like a little kid who’s way past her bed time.  My emotions are just raw and I feel completely overwhelmed by the world and everything in it.  If I go home and have a proper rest in bed I’m fine and back to normal a couple of hours later.  It’s bizarre to be so out of control of my feelings, but it’s just something I’ve had to get used to.

The other main symptom of emotional lability I get happens when I’m relaxing at night in bed.  I have the sensation like my stomach’s dropped, a bit like when you’re dreading an event or have just heard bad news – butterflies but with your heart in your boots.  I have no idea what this is all about, but it lasts about 30 minutes then, when I’m totally relaxed, it just goes.  It’s not pleasant but again is just something I’ve had to get used to.

Both of these symptoms can also appear when I’ve overdone it.  If I’m on the computer and my stomach suddenly drops, or if I’m out and I suddenly start to feel weepy, I know I’m past the time when I should have stopped and be resting.

There are lots of theories as to what causes emotional lability in neurological diseases, eg. adrenal dysfunction, sympathetic/parasympathetic nervous problems, but in truth no-one has a clue what’s going on.

Mast Cell Disease

Anxiety is a recognised symptom of anaphylaxis and is often the reason many people with mast cell diseases have previously been diagnosed with an anxiety or panic disorder or their symptoms labelled as psychiatric or “all in your head”.  The mediators released during a mast cell event, eg. histamine, cause blood vessels to widen.  This lowers blood pressure and the heart starts to beat more quickly in order to bring blood pressure back up.  This can trigger the flight or fight mechanism and quite severe feelings of anxiety and/or mimic a panic attack.

Mast cell mediators also directly influence neurotransmitters such as dopamine and seratonin, which amongst other things are involved in regulating our mood.  Histamine also causes our muscles to contract and it’s hard to feel zen when every muscle in your body is clenched!  There are several current research papers which are looking at the link between histamine release and severe psychiatric disorders such as schizophrenia and bipolar.

The first drug reaction I ever had in 1998 made me pace round my bedroom for hours, extremely agitated and highly anxious, acting like I’d totally lost the plot.  And when my mast cells really starting going berserk in 2012 I had severe anxiety after every food I ate and even after drinking a glass of water.  The anxiety isn’t mental or emotional, it’s purely physical and totally outside my control.  Steady breathing (in through my nose and out through my lips) does help, as does lying in a warm bath, but for the most part I just have to ride it out.  These mast cell reactions are really unpleasant and often my only way of coping is to tell myself that no-one ever died purely from feeling anxious.  Of course you can die from the other symptoms of a mast cell reaction, but that’s a topic for another day!

I’ve suffered from depression most of my life.  I didn’t have an easy child-hood and obviously as a teenager my low mood was put down to the legacy of that.  Puberty was tortuous and I used to wake every day wishing I were dead.  Hindsight is a wonderful thing, and I now know of course that with the changes in my hormones my mast cell disease would have been rampant (I developed migraine at 13 and my period pain was off the charts, both of which are symptoms of mast cell disease).   I saw a Psychologist when I was 18 and was put on an anti-depressant.  Luckily the Consultant chose Dothiepin, a tricyclic anti-depressant, which as a side-effect has anti-histamine properties.  It really helped and, along with the counselling, did me the world of good.

By the time I was in my mid twenties I no longer felt I had any unresolved emotional issues yet was still chronically depressed, albeit at a well functioning and low level – to see me you’d never know as I’m confident, chatty, and bubbly.   This isn’t forced, or a face I put on, I think I genuinely have this kind of disposition, it’s just that the depression was always there lurking in the background.  Depression runs in my maternal family and I just thought it was in my genetic make-up and something I’d simply have to put up with.

However, starting a low histamine diet, and taking antihistamines, has changed everything.  There are days I wake up in such a good mood it’s completely un-nerving as I’m just not used to feeling  happy for no good reason.  Of course, the peri-menopause has started and my wildly fluctuating hormones are buggering up my mood no end, but I’d hate to think how much worse my emotional health might be if my histamine levels were still sky high!

As I’ve mentioned before on my blog, I think I inherited both EDS and MCAD from my Mum and am convinced other members of my extended maternal family have mast cell issues, which largely manifests as panic and depression.  One cousin in particular has severe migraine disorder and chronic mild depression yet I can’t persuade her to try a low histamine diet or to try anti-histamines – you can lead a horse to water but sadly you can’t make it drink.

 

Pre a proper diagnosis, many people with M.E., EDS and/or MCAD have at one time or another been told their symptoms are purely psychiatric and may have been offered anti-depressants.  These can be mildly effective, as some help with pain and some have weak anti-histamine properties which unwittingly help with mast cell disease, but they’re a sticking plaster over the root cause of the problem.  You know yourself.  You know if you’re genuinely suffering from a mental health disorder, or whether there’s something else going on.  My bubbly disposition was in stark contrast to my chronic depression and I’m really very stoic and generally not prone to panic attacks or anxiety – there was something else at play, and from a very early age.  You’re not losing your mind, you’re not a hypochondriac and you’re not expressing “abnormal illness behaviour” – if you think you have a mast cell issue or something else causing your psychiatric symptoms keep pushing for an accurate diagnosis as the right treatment could change your life.