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.

Osteoarthritis - Wear and Tear or Disease?

Having recently been diagnosed with OA and having spoken to few others who have also been diagnosed or are suspected to have it, but are being brushed aside by their GPs, I went on a bit of a trawl online.

GP's are belittling this condition to suit themselves. I can understand it to a point as there is little they can offer in the way of treatment.  Pain meds, anti-inflammatories etc are offered as a form of management and ultimately surgery may be required to replace a joint.  

However it is a degenerative disease and not just the flippant "wear and tear" that many Doctors call it, leaving their patients in the dark about what it could ultimately mean for them in the future. Whilst it may take decades to cause severe damage leading to surgery, for the unlucky few it can be as little as 12 months. 

Note that it mentions on many sites the pain levels do not always match the severity of the disease:

My pain levels were so badly elevated when my knees 1st started that I thought I was going to end up in a wheelchair.  As the condition 'settles' so does the pain but, as my mum will tell you, each time it affects a new joint those pain levels rocket again until your body 'gets used' to it.

Mum has had OA since she was 28 (she is now 67). Over the years it has affected every joint in her body. However, she has never needed surgery. Hers is a wide spread but fairly stable form of OA which she has managed in the last 10 years using supplements called Glucosamine and Chondroitin.**  

She keeps herself as mobile as she can and has to manage pain with basic pain killers, heat and rest as she also has diverticular disease which prevent her from taking strong medications (as her stomach bleeds).

**There have been studies which have suggested that neither of these supplements benefit people with OA.  I can only tell you it has helped my mum and as we are all different, in the way we respond to medications and supplements, I have mentioned it here as a suggestion that some may wish to consider trying.

 

 

The following 3 snippets are taken from UK, American and Canadian sites in relation to OA. - Please note that whilst it may be referred to as wear and tear it is also clearly categorized as a disease and is NOT found in EVERY adult, old person or fat person.

  

UK

http://www.nhs.uk/Conditions/Osteoarthritis/Pages/Introduction.aspx

Symptoms of osteoarthritis

The symptoms of osteoarthritis vary greatly from person to person, and between different affected joints.

For example, a joint may be severely damaged without causing symptoms, or symptoms may be severe without affecting the movement of a joint.

Three key characteristics of osteoarthritis are:

·        mild inflammation of the tissues in and around the joints

·        damage to cartilage, the strong, smooth surface that lines the bones and allows joints to move easily and without friction

·        bony growths that develop around the edge of the joints

This can lead to pain, stiffness and difficulty doing certain activities.

Osteoarthritis mostly occurs in the knees, hips, spine and small joints of the hands and base of the big toe. However, almost any joint can be affected.

Read more information about the symptoms of osteoarthritis.

 

Who develops osteoarthritis?

Osteoarthritis usually develops in people over 50 years of age and is more common in women than in men. It is commonly thought that osteoarthritis is an inevitable part of getting older, but this is not quite true. While in very old people the changes of osteoarthritis are visible on X-rays, they don’t always have related pain or problems with joint function.

Younger people can also be affected by osteoarthritis, often as a result of an injury or another joint condition.

USA

http://www.arthritis.org/what-is-osteoarthritis.php

If you’ve been diagnosed with osteoarthritis (OA),  you’re not alone. This chronic disease affects some 27 million Americans. OA is characterized by the breakdown of cartilage – the part of a joint that cushions the ends of the bones and allows easy movement. As cartilage deteriorates, bones begin to rub against one another. This can cause stiffness and pain that make it difficult for you to use that joint. Osteoarthritis can also damage ligaments, menisci and muscles. Over time OA may create a need for joint replacements. 

There are two types of OA – primary and secondary. Primary osteoarthritis is generally associated with aging and the "wear and tear" of life. The older you are, the more likely you are to have some degree of primary osteoarthritis. However, not everyone gets it – not even the very old. That’s because OA is a disease, and not part of the normal aging process. Secondary osteoarthritis, in contrast, tends to develop relatively early in life, typically 10 or more years after a specific cause, such as an injury or obesity. 

Osteoarthritis occurs most often in knees, hips and hands.  Other joints, particularly the shoulders, can also be affected. OA rarely affects other joints, except as a result of injury or unusual physical stress.

The pain and stiffness of osteoarthritis can make it difficult to do daily activities including your job, play sports or even get around with ease. That’s why it’s important to learn all you can about this disease, how it affects you and how to live with it – a process called self management.

CANADA

http://www.arthritis.ca/page.aspx?pid=941

The word arthritis means inflammation of the joint ("arthr" meaning joint and "itis" meaning inflammation). Inflammation is a medical term describing pain, stiffness, redness and swelling.

There are more than 100 types of arthritis. Arthritis is among the leading causes of disability in Canada, affecting nearly 4.5 million people of every age, physical condition and ethnic background.

Osteoarthritis (OA) is the most prevalent kind of arthritis, affecting more than three million Canadians. It occurs when cartilage (the tough elastic material that covers and protects the ends of bones) begins to wear away. Cartilage is an essential part of the joint; not only does it act as a shock absorber, it also enables the joint to move smoothly. With OA, the cartilage erodes, eventually resulting in pain, stiffness, swelling and bone-on-bone movement in the affected joint.

OA will usually cause the affected joints to become stiff in the morning, but the stiffness usually lasts about 15-20 minutes. As the day progresses and joints are used, the pain and discomfort can get worse. Resting the joints tends to provide relief. The joint may become inflamed with pain, warmth and swelling. The pain and stiffness causes the joints to be used less often and the muscles surrounding the joint weaken.

As the cartilage wears down over time, the joints may slowly become bigger (boney) as the body tries to heal itself. With severe OA, the cartilage may wear away entirely and the bones may rub together ("bone-on-bone"). When this happens, the joints become more painful.

There is also a rare type of osteoarthritis called Inflammatory OA. This is a more severe, rapidly progressive, multiple joint OA that is associated with more stiffness in the morning and swelling in the joints with warmth and redness. This type of OA is more difficult to diagnose because it is often confused with rheumatoid arthritis (RA). A rheumatologist can help make the correct diagnosis and suggest treatment for Inflammatory OA.