REPOST: "The Fibro, The Depression and the Psychology of Life"

Originally written May 23rd 2011.

In light of recent events and the passing of Robin Williams I am reposting this blog from my archives. 

(Blue section relates specifically to depression. The rest of this blog post talks about my struggle with Fibro, emotions and weight)

I read a blog from a fellow fibromite (and GP) http://bit.ly/jXRht8

"Fibromyalgia is a purely psychological condition. There is no physical component other than what you imagine. It is simply a case of mind over matter. If you were more positive, and could pull yourself together, this would not be happening to you.I disagree.However, maybe at least part of fibromyalgia can be controlled by addressing the psychological issues…………Yet people with fibromyalgia often seem reluctant to pursue any form of psychological intervention for their illness. For example, I ran a poll asking people about fibromyalgia ebooks. I asked what sort of information people would hope to read about. One of the suggested topics was: “Counselling and Cognitive Behavioural Therapy”. In the poll, this was one of the least popular responses."

I got inspired to write a response then decided I was waffling so thought I’d write in my blog instead.

Having had CBT and counselling for many other reasons in my life (prior to the fibro diagnosis) I guess I have to say I am VERY sceptical that it would have any benefit on me at this point in my life. CBT and counselling work as long as you keep attending the sessions -BUT eventually the counsellor says OK you’re done NEXT patient please, and you get left to carry on alone.
Well for me, that doesn’t work. I lose focus, interest, patience very quickly. Everything I’ve learnt fades away from me.

YES, thinking positive is a good thing. My acupuncturist often helps me to think positive during our sessions. We talk about the good stuff I’ve done that week and what I achieved rather than failed to do.  She reminds me to try to think of 2 good things I’ve done each day b4 bed, and that night I will usually remember to do it.  But only 2 days after I’ve seen her my head clouds over, the ‘empty’ feeling creeps back and all the negative thoughts take over again. WHY? I wish they wouldn’t.

My depression / anxiety and OCD seems to affect ALL my thoughts. not just those that dig at me about whether the door is locked or the lights are off but the darker thoughts, the depressing ones. replaying images in my mind every time I close my eyes.  Images of sick and injured animals, flashbacks of a recent near miss accident in the car, arguments with loved ones (that didn’t happen, but I imagine them), bad news even death.  (I actually had the thought on Friday night – what the hell would happen to my OH and my mum if I died in my sleep)  I mean really?  Who goes to be thinking like that?

I DONT WANT TO THINK LIKE THIS.  I want to think of happy times, happy places, happy people.  Positivity comes and goes like a tide.  When the water is high I feel overwhelmed with a fear of drowning. I can’t see or reach the bottom where everything I want is staring back at me from the sand.
As the waters recede I feel calmer, I breathe deeper, I reach out for those happy memories and manage to grab a hold of them.  I find my smile again, and even my laughter.  (they are my shells and pebbles)

Of course that wave is going to come back.  How I deal with it varies. Sometimes I manage to stay afloat and hold on to my positive memories: My shells and pebbles held tightly in my hands.  I wait it out until the waters ebb away and  remember this as a day I achieved something good.  Other times (such as recent weeks) I just can’t hold on to them, I watch them falling back down through the water to the sand.  I feel the seaweed tightening its grip, tugging at my body, pulling me down.  That empty feeling washes over me and I sink.  I don’t want to, I can’t help it.  It is easier to sink than fight to stay afloat.

Wow, I did waffle didn’t I.  Where was I, oh yes…CBT and counselling and the psychological side of Fibromyalgia.  Maybe a little personal counselling is called for at this juncture:
YES, of course there is an aspect of psychology to having Fibro.  You can’t fail to see the connection, when your body is in constant pain, you’re bound to become depressed.  BUT, what if you were already suffering from depression (for more than 15 yrs) before you were told you had Fibromyalgia.  Then you start to ask yourself the age old question:  Which Came First?
Have I had Fibro longer than I think I have?  I know I have always been sensitive to stimuli.  I have never really been what you might call ‘fit and healthy’.  Did my depression (and severe lack of serotonin) lead to my Fibro, or has the fibro been there all this time, causing ALL my other problems since I was a child.  I know that over the last 10 yrs my health has drastically deteriorated and the pain I experience has multiplied with every passing year. 

I have therefore assumed that the fibro started sometime in the last 10 yrs. But did it ?

I can recall being light sensitive as far back as I can remember.  I was always the kid who said OWW and got mocked for being a wimp.  I was diagnosed with Tenosynovitis in my hands at the age of just 15 and wore splints for 2 years.  Was this my bodies 1st flare?   I have always been emotional and easily hurt/offended.  Touchy and moody. Diagnosed with depression at just 19, I’ve never been of the meds since.
My childhood wasn’t great – I’m not going to go into details, but suffice to say I had a lousy father.  What I will say is it made being a kid tricky.  I was on edge a lot of the time cos of his temper.  He was never physical but god his words. (shudders).
I wasn’t one of the popular kids (in fact I was the target of much amusement for the bullies) and I didn’t have too many friends either.  I am an only child and learnt to entertain myself from an early age.  Is this another factor in my current situation?  Did this have a psychological effect on me in adulthood. TOO BLOODY RIGHT it did.
They say the bad stuff is easier to believe.  Aint that the truth.  When you spend 12 yrs of you youth being picked on and told you’re fat, lazy and useless, you kinda figure well, if that’s what they see in me, then so be it.  That’s what I’ll be.  Now don’t get me wrong.  I didn’t stop and think one day, I’m going to be fat lazy and useless, but it’s about conditioning.  What we are taught, no matter who teaches it, will have an impact on our lives.
I heard the word FAT so many times its what I’ve become.  IM NOT BLAMING the bullies for making me fat – so don’t go getting on your high horses at me.  What I’m saying is, indirectly, subconsciously, somewhere in the back of my screwed up head, something said UR FAT….so that’s what I am.  I’ve struggled with my weight for years.  I was NOT FAT at school.  I was taller than the other kids, and bigger built. I was the wimp, the one who cried a lot, so I was an easy target.  I am not going to deny that, over the years, I’ve developed an unhealthy obsession with food. I’ve used it for comfort, in anger, and in joy.  I’ve had CBT to help me break binge cycles and counselling to try to get to the root cause of my obsessions.  You know what…every time….it comes back to the bullying at school.  Those words ringing in my ears…Fatty fat fat.  Are you sure your bike can hold you…wow look at the wheels buckle…are you pregnant….and so the story goes.   I am an addict.  I know this.  I know what’s good for me and what isn’t.  Don’t get me wrong. I DONT eat take aways and junk food.  I CANT – I have an intolerance to all the additives in that sort of crap, apart from not being that fussed on the taste.  But I am a chocolate addict, and I do eat too much of the right thing too.   KNOW IT ALL.  ITs a continuing war of wills in my head, heart and stomach.  I have days, weeks even months when I can do soooo well, lose weight, feel better about myself, then BANG. Just 1 wrong word from a stranger or a family member, 1 crisis in my life – a bill I can’t pay, something breaks, even a Fibro flare….and I’m back to my old habits.  IT can take me months to get the willpower back and start again.  Oh I know, I can hear people screaming at me…I DO THAT TOO… there are many many of us out there.

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You know that hardest part about being overweight (and I’m talking morbidly obese here, not just a few pounds off your ideal weight).  Its not finding clothes to fit, or the cruel words from strangers. It’s the way you get treated by the medical profession.
On more than one occasion I have walked into a doctors office and watched the GP look me up and down in that “Oh here we go another fat person who wants to know what’s wrong with them” way.  You just know their answer to your question is going to be lose weight. ….

Me: ”Doctor, I’m here because of this severe pain in my shoulder, I can’t move it, I can’t sleep…..”
GP:  *looks me up and down and says*  ”Have you thought about losing some weight?”  ”What have you been doing about losing your weight?” “Would you like me to refer you to a dietician?”
Me:  “Yes I have thought about it, Yes I have tried, no I don’t want ANOTHER referral to a dietician”. Hangs head in shame and leaves GPs office feeling like a piece of dirt under her shoe.

YES this really did happen. That was literally how the conversation went.  I got nothing from her about my shoulder and left the surgery in tears. (this was before my fibro dx).  I had to stop my OH from going in there and kicking off.  Suffice to say I changed GP practice the next day.

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Oh dear I went off on a tangent again didn’t I?
The words just seem to be flowing today…. But I really must wrap this up now before I send any more of my readers into a boredom induced coma.

Conclusion :  Dear Doctors, We are all different, what works for 1 patient is never going to work for them all.  I am ME, I am an individual who deserves my own diagnosis, my own medicines and a little bit of respect from you when I walk into your office in need of help.
If I tell you I have tried something and it didn’t work, don’t assume I am LYING.  If I tell you I CANT do something you suggest to me, don’t assume I am LAZY.  If I am asking for your HELP, I want you to do your best for me, not palm me off with 3rd rate ideas, pointless meds and a load of medical jargon I don’t understand and will never remember !!
Treat me, the way you would expect to be treated. I mean this in the medical sense and in the way you speak to me.
Yours
A chronically sick person who just wants to live her life in the best way she can, and has finally come to terms with the fact she needs help from other people to achieve this….and is asking for YOUR help.

DEPRESSION

It has been a long time since I posted here but recent posts on a FB page I belong to have prompted me to write this. 
What started out as a group post got longer and longer and I couldnt stop writing so I decided to post it here. 


DEPRESSION: 

We need to recognise the signs and take action.

Don't ignore these feelings, you need help.

Anyone can suffer from depression at any time in their life.  It may be due to illness, stress, a crisis, long term health conditions, a break up, even the happy things in life. Moving house, marriage, the birth of a child. These things cause so many changes to our emotional levels that sometimes our bodies simply can't cope and we need help to get back on an even keel.

Firstly, See your Doctor, let them know how you feel and what you think may have caused it.  You might not have a clue why you feel this way. Tell your doctor what has happened in the last 6 months. They may be able to see something in your life that could be a cause that you wouldn't have considered. Be honest with them.

Sometimes it might be that you need treatment other than antidepressants. Pills are not always the answer.

However, if your emotional state is so far off balance that you need medication to help, then DONT LET YOUR GP FOB YOU OFF.  If one won't listen demand to see another.  If you KNOW you need the help then you deserve to be taken seriously.

Secondly, Talk to someone .... ANYONE.....  talk to a stranger, a friend, a family member, the cat........ No ok,  I'm trying to make light of it but seriously, you need to talk.  Oh I know, the last thing you want to do is talk, you don't feel you have the energy to get the words out, you can't make sense of your thoughts, how could you possible communicate with someone?  It doesn't matter what you talk about, or how confused you are, if you find the right person to talk to they will do most of the talking for you, you just need to make the 1st sound.

I have suffered for 20 years.  I have what is known as Major Depressive Disorder.  It's a roller coaster ride of emotions and you never know when the next dip will be. It took me years to recognise the signs but now I know what is happening I can deal with most of it.

I've had breakdowns, huge amounts of time off work (when I was still fit to work), hurt and hated myself. But the one thing that I have had through it all is someone to talk to.  It hasn't always been the same person. In fact, until recently I struggled.  I relied on counsellors and family. Family members do their best to understand but unless they have experienced it themselves it isn't easy for them to get to grips with what you are feeling.   My husband understands that I suffer, but he struggles to know how to help me.  If it wasn't for the people I have met online over the last 5 yrs I suspect I would have really lost the plot by now.

Social media can help. Yes, it may be taking away our ability to talk to each other face to face, to socialise outside our homes, in the general sense .........  but for those of us confined to our homes it is a life line.

The bad times can be VERY BAD, you feel like you simply can't cope, don't know what to do with yourself. You might even feel that you want out of this life.

It doesn't mean you WANT to hurt yourself, to die.  The emotions you are feeling are so overpowering that they take over.  The mind wants out of the situation, out of that moment, out of your body.  You want to escape the cause, the pain, the fear.

Yes I sit and cry, sob, shake, break my heart, rock in my chair, for days on end. I've had those thoughts of wanting to escape from it all. It's very scary and it physically hurts in your heart and head. But I know that when I can see clearly, for just a brief moment, that if I just send a simple message out to someone on here, I will get the hug I need, albeit a virtual one.

PLEASE REMEMBER, there is no shame in suffering from depression. It is a medical condition that millions deal with all across the world. 

DON'T SUFFER IN SILENCE, Seek out support and medical help. 

There will always be someone there that WILL understand what you are going through....... Reach Out. 

This is my experience, my opinions, my realisations and lessons learnt.

An article courtesy of @barnaclebum from twitter

I recently came across this written by a very special lady and a friend of mine on Twitter and wanted to share it with you dear readers:

Every day I click onto Twitter-it's my only contact with the ‘real world’ that I have apart from my dear caring partner and my son when he comes home from Uni. Before I ‘found’ Twitter, the world outside had been lost to me for 5 years. My life had become a very lonely, isolated bleak existence. The last time I had spoken to another person was during a weeks stay in hospital, before that-i can't remember, it had been so long. I found myself asking ‘how did my life come to this’? I used to have a life-a career with great potential-a fantastic social life and lots of people I called my friends. Where had all this gone? How did my life fall away piece by piece like this to leave me alone and scared of what kind of future I might have? 

18 years ago I was diagnosed with having M.E. I also have very severe chronic asthma and have spent my life in and out of hospital. It had never stopped me from living a full active life as much as physically possible. I was never going to climb Everest but I could live with that disappointment! I was content to have a family, a career, and a great social life. In my spare time I worked in the art dept for our local AmDram club which my son belonged to. I loved doing this, it was something I was very proud to be part of. Once I became ill with M.E. all this started to change. I no longer had the energy to keep doing all these things and I got worse and worse until I had to give in and stop doing everything I loved-everything that made me-me. The only help and advice I got from my G.P. at that time was ‘I know nothing about M.E., I suggest you go to the library to look for some books for help and advice’. Wow! I thought-this is fun! So, I went and got 3 books-back then there wasn't much information on M.E. around-it was still being called ‘Yuppy Flu’ for Petes sake! Once I started reading, finally it didn't feel like I was going mad anymore. I was finally able to see that there was this strange illness, it was real after all, not all in my head and I had been unlucky to be affected by it. 

Pacing seemed to be the main message, learn your limitations and live within them. “How am I supposed to do that?” I asked myself. I had a child that needed caring for, a full time job and a home to run, let alone things to do, places to go, people to see! So I kept trying to keep it all going, “I'll rest at the weekend” I told myself, but of course I didn't, and slowly but surely it all drifted away! First to go were the extracurricular activities, no more going out, I loved live music and was part of my local scene for years but that had to stop, id be lucky to stay till the end of the night and then it dropped to being lucky if I could move after tea time. Friends who used to visit stopped coming around, eventually completely. The housework started to slip, it became a choice between help my son with homework and put him to bed or do the hoovering, I saw to my son. My partner had to do his share plus mine. We have always been partners working equally to keep our little ship afloat but eventually I found myself falling through the door from work and collapsing exhausted and in pain. In the end I was signed off sick. I just couldn't do it anymore. As soon as i thought things might be picking up I was knocked back down with yet another virus or chest infection, each time getting a little weaker and another piece of my life would slip by. 

I had now become so ill and weak I was only getting out of bed once or twice a week. I’d cram as much in to those day as i could before collapsing back into bed. I had lost my job, it wasn't fair to expect them to keep the vacancy open for me, they needed someone who could be relied upon to turn up every day and not have to be rushed home during the day from being so weak and exhausted I couldn't move, I wasn't reliable, I had become a liability, it was a waste of a good job and a good wage. At first I was so ill I really didn't care that I couldn't work. I decided it wouldn't be so bad being a housewife. I thought once I'd had enough time to recover properly I'd get well and all would be fine again. To cut a long story short that didn't happen, I tried everything I could find to aid my recovery, from acupuncture to yoga, antidepressants and counselling, exercise programs and even reflexology. You name it i tried it, I was desperate to find anything to help me recover but all i got was worse and worse, until in the end I had to admit defeat and except my life was never going to be what it once was. It took me a long time to come to terms with my life being as it is now, it has taken me five years of being totally bedridden apart from struggling to the loo and back to accept that this might be how my life is, maybe for the rest of my life. It's a bleak hard bitter pill to swallow but i had to make myself accept it or I would become lost forever in a black pit of howling depression. 

Now on top of all this we have the government cutting our benefits we so desperately need. My partner has had to stop work to become my full time carer but has since developed his own health issues. He has just had to fill in his second ESA50 in twelve months, no doubt his WCA appointment will arrive through the letter box any day now, it's hard to explain the fear of a brown envelope but anyone who has experience of this will know exactly what I mean! We have the added worry of him being fairly assessed or will it be the cycle of appeals again. My ESA50 could arrive anytime also. Last year I was put straight into the support group but live in fear of not being so lucky this time. ‘lucky’ to be in the support group! To be assessed as so sick and disabled I'm in the lowest % group of people on benefits who are so sick and disabled, I'm not expected to have to find work. But for how long will i be classed as too sick to work? Especially when people with terminal cancer are being treated as fit and expected to work for their benefits. Maybe next time I'll miss out a piece of important evidence on my form or just get one of those assessors who find everyone fit. How will I cope then? I've only been able to leave the house once voluntarily in the last 5 years, how will I be able to manage if I have to appeal any decisions? We will already be affected by the new bedroom tax now my son has gone to University plus we have to pay £300 council tax from our benefits. They haven't come for my DLA yet, i get the lowest care component so I will be in the Governments target group for re-testing as soon as PIP is introduced. Chances are, it will be taken away rather than increased (im just not that lucky) 

We get no help from Social Services or any other support groups. I get no support from my GP, he gave up trying to help a long time ago, it's just the two of us struggling to get by. Our savings are long gone. We don't have sky TV or a big flat screen TV or even full internet access. We no longer run a car, or buy new clothes or even have cupboards full of food. We barely scrape by yet the government want to take more away to incentivise us back in to work and not be left on the scrapheap as Mr Grayling likes to say. They could stick me with an electric cattle prod but it won't change the fact I am just too sick and weak to work. But I am on the scrap heap, I am unemployable, (if there were any jobs available) so now it seems in the eyes of the government not only am I unemployable but a scrounging scumbag, I have no job so I am a nothing, a nobody, without a job you are not a person, you have no identity, no worth, no value, just a leach on society, taking from that valuable pot even though I contributed to it for many years. It feels I'm one step away from being classed as a criminal for being so ill I cant work. IDS, Grayling, Miller, Cameron and Miliband all talk of getting people off benefits and supported in to work, giving people hope and a future. All great sentiments but where does that leave people like me? 

I'd love to have my life back, I'd love to be able to go to work again, but that is just not a realistic option for me. What about my future? Do I not deserve one? It may not be any worth to a politician but I have a son and a partner who value me, whose lives I am an important part of. Can you Mr Cameron, Mr Miliband understand how humiliating it is to have to beg for every penny I can just to make ends meet? To hear you repeatedly say I have no value, how am I expected to keep fighting when you want to make it even harder for me? For those who wish to criticise I challenge them to live a month in my shoes.

If anyone else would like to send me their story to post on my blog I'm more than happy to do so.

Gentle Hugs to us all.

xxxx

Leigh