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A friend of mine was complaining the other day so I wanted you to remember that I’m one of the lucky ones: I don’t have pain so bad so often that I need to take disability!  Some of my American friends are made to feel lower than dirt because they’re unable to work, because they demand medical attention, because they’re unable to pay for the constant medical attention they require.  They have to choose which medications they take even though they are told by a doctor that they need everything on the list due to financial reasons.  Don’t forget I was made to feel like a “girl who cried wolf” for over 20 years before I finally got a diagnosis!  Imagine vomiting from pain and then being told “That’s normal – stop your moaning and get on with it!”

Just because I have a happy marriage now and I’m able to hold down a job at the moment doesn’t mean that there haven’t been times when I’ve been treated badly.

I finally achieved a diagnosis (I want to say it was 2005 but may have been 2004) of Polycystic Ovary Syndrome, Insulin Resistance and Endometriosis.  Sadly, this had a number of ramifications: I was a vegetarian and had to completely change my diet.  When I told my ex-husband that I needed to start to eat meat he said “Do you have to?” as if I had a choice!

I was in a spiral of pain and depression – when I was struggling physically my ex would imply I was lazy.  His parents didn’t respect me.  When I would struggle at work I would make mistakes which lead to complaints which lead to more mistakes…  After years of being told you aren’t worth much, you start to believe it.

I had to change the way I thought about myself.  So on the one hand I was delighted to know that my pain wasn’t in my head but on the other I needed to think about my body in a completely different way: I have limitations.  This fact didn’t sink in for a number of months/years and I wound up taking a number of medications in order to get myself into some sort of order – not to mention I wanted to pretend that my illnesses would not affect my “normality”.  I took pregabalin which is a medicine that is mainly used to treat epilepsy. It works by stabilising electrical activity in the brain.  As pregabalin stabilises electrical nerve activity, it is also used to treat pain that occurs a result of damage to or a disturbance in the function of nerves (neuropathic pain).  I took metformin for my insulin problem.  I took Mefenamic Acid (prescription anti-inflammatory), paracetamol and codeine for pain.  I took laxatives for the codeine side-effects.  I was taken off birth control and given HRT patches.  I took St Johns Wort when I was off The Pill but gave it up again when I went back on it.  I took Milk Thistle for my PMS.  Finally I gave in and took prozac for the inevitable depression that I was in thanks to the never-ending pain.  I positively rattled!  I was in the position of taking so many medications that I was getting some terrible side effects and taking medications for the side-effects.

I moved jobs – from the solicitors’ firm where Helios and I met to a pharmaceutical company.  The best thing I ever did was leave law.  I think they were in the process of trying to push me out anyway.  I am a very good secretary and office administrator but, in that poisonous environment I only went from bad to worse.  The pharma company wasn’t great either but it was better than lawyers!  Ultimately I was made redundant form the pharma company just a few weeks after my third laparoscopy – in December 2008.  Happy Christmas to you!  I agreed because they gave me a generous settlement.  I could easily say that my health was a factor in their decision and I’m sure that’s why they were so generous.  I didn’t have the energy to fight it even if I did want to.  I spent 2009 going from one temporary position to another.  Financially I was a mess but things were looking up.  I came off a majority of the pills and, thanks to the most recent surgery, my pain was at an all-time minimum.

My point is that you don’t know what life will give you.  When you are given terrible news, you will probably struggle too but I know you will manage.  Until then you have to take one day at a time.

Foxy

 

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Working through a Chronic Illness

Thanks to my dear sister for recommending the linked website below.

I have periodically struggled with raising awareness of my chronic illnesses.  In some situations the act of talking about chronic illness does more than raise awareness, it can become a black mark against you – a burden to which you have to work against.  Bearing in mind we have so much to cope with, we could do without the increase in discrimination that inevitably comes with talking about chronic illness at work.

So many of us have no option but to work despite any symptoms we may experience.  As well as posting reasonably regularly on my blog, I also have a full-time job as a secretary and regularly bake treats in order to raise money for various charities.

While I want to raise awareness and money for my chosen charities: Endometriosis UK and Verity – PCOS Charity, I work full time and need to have my working life as stress-free as possible.  It would seem perfectly logical to talk to friends at work and raise awareness.  However, I don’t want to be seen as remotely incapable.  Because I talk to people at work about chronic illness, I regularly over-work myself just to ensure that no one could ever get the hint that I may be enduring symptoms.  It’s little wonder that I spend a good portion of my weekends in bed recuperating.  It’s the price I pay for trying to have it all.

The link my sister shared tells of the inspirational story of US  Rep Gabrielle Giffords who returned to work after being shot in the head in January.  Of course, not all of us will be hailed as heroes when we return to work after achieving a diagnosis although we truly ought to be.

As much as I agree that returning to work is a good idea: psychologically it’s better to have something other than symptoms to focus on and to have goals outside; however, there are times when work simply isn’t an option.  I would hate to think that we would be encouraged to feel guilty about being unable to return to work.  Yet, I’m sure that’s the problem a lot of us face.  In a society that encourages everyone to “Figure out a way to keep working”, it’s too easy to blame yourself if you are incapable of handling the rigours of working life.

When I was first diagnosed I didn’t take a significant amount of time off work.  In fact, I had one week at home after my first surgery and went immediately back to full-time work.  I spent years trying to get the balance of my symptoms, medications and even surgeries right.  I struggled with my working life.  I had lots of side-effects from my numerous tablets.  My neural-inhibitors in particular were very odd to get accustomed to.  I felt vague and woolly-headed.  Needless to say, it was inevitable that I was making a number of mistakes at work.

Even though I struggled, I insisted on working through the issues without discussing my issues with anyone at work.  Perhaps I would have come away from that place feeling better about the organisation had I forced them to acknowledge my limitations and discuss ways of making my working life easier.   However because I did not feel comfortable discussing any weaknesses that I may be experiencing, we will never know if it really was the right decision to hold back that essential information.

Of course now that I finally have a pain management and hormone management programme in place, I am more capable of handling moderate amounts of work stress.  It must be noted that it’s taken a number of years to get to this point.  These years for me were spent struggling with changing relationships in my private life, struggling with the various symptoms and side-effects, struggling with a full-time job, struggling with the stress I put on myself to seem normal.

While I think that a job can be beneficial for those of us with a chronic illness, it is essential that we treat ourselves gently, to have realistic expectations of ourselves and to ensure that we aren’t damaging our health by “figuring out a way to keep working”.

Foxy

Depression and Chronic Illness

It is little wonder that people with chronic illness suffer with depression!  If you were told that you would regularly endure vomiting and passing out from pain at least once a month for the rest of your life – you, like me, would see no end of pain.  No relief.  No hope.

Of course in some ways it would be easier if we were bleeding from the eyes because at least then others would be able to easily spot the trouble and treat us with the care and attention we deserve!  But I digress…

A psychologist once told me that depression doesn’t occur in people who are assholes: people who are abrasive, rude, self-assured and never seem to have any problems to speak of who go through life saying “Why don’t you just…”

People who endure depression regularly think of others before themselves and care about what other people think.  Perhaps we’re too busy trying to live up to the expectations of others to take care of ourselves properly?  Whatever the reason, once again, if you’ve got depression brought on by a chronic illness you’re in good company here.

According to http://www.helpguide.org/mental/depression_women.htm The signs of depression are:

  • Depressed mood
  • Loss of interest or pleasure in activities you used to enjoy
  • Feelings of guilt, hopelessness and worthlessness
  • Suicidal thoughts or recurrent thoughts of death
  • Sleep disturbance (sleeping more or sleeping less)
  • Appetite and weight changes
  • Difficulty concentrating
  • Lack of energy and fatigue

Depression crept upon me slowly.  I didn’t wake up one morning with the uncontrollable urge to cry every 5 minutes.  There wasn’t one particular incident that made me wish I were dead.  The feelings of worthlessness I had stemmed from a number of suspicions and experiences that are too numerous to mention.  It stemmed from an unhappy marriage and miscarriages.  I felt I was unable to be a woman because I was unable to have a baby.  I felt that if I could only have a baby, I would be vindicated because I could finally achieve something.  How awful it is that – for a woman who feels worthless – I couldn’t even produce offspring which is something that most women simply lay back and think of England to achieve!

It’s little wonder then that where and when I cried only increased.  For years I felt I was totally alone.  In trying to find some happiness I made friends but felt empty.  In the end, it seemed that the only good thing in my life was my friendship with Helios.  When I asked God for a less stressful life, a more simple life, I believe He sent me Helios.  I tried a number of things to try and break through my discontent: I wrote a diary, I had numerous sessions with a psychologist, and ultimately I changed my life entirely, for the better.

I addressed everything at once: my health issues, my employment, and my personal relationships.  I started taking neural inhibitors for my incessant vaginal pain from bacterial vaginosis.  I separated from my first husband and started seeing Helios regularly.  I divorced and had my second laparoscopy.  I started taking metformin to control my insulin resistance.  I started using HRT to control my PCOS symptoms.  I started taking St John’s Wort in an effort to stop crying.  I divorced and purchased a small flat with the financial settlement.  I took the birth control pill and then stopped again – because the St John’s Wort counteracted with my birth control.  I took Milk Thistle for my PMT.  I rattled with the tablets I was taking.  I worried about all the tablets counter-acting with one another.

In the middle of it all, Helios was there and supported me.  He looked after be after my second surgery and then my third.  He never made me feel weak or guilty.  We married despite all the physical problems I have.  He was always gentle and kind to me.

Even after my life had completely changed for the better, I was still unable to shake the feeling that my head was still stuck in a dark cloud.  I knew I was happy but I just didn’t feel it.  I finally gave in and discussed the matter again with my doctor who again recommended prozac.  This time I took it.  Within the year I was finally myself again – and happy.

Just because I’ve had depression doesn’t mean that I am weak.  I am strong because I was able to ask for help.  I care about others which means I’m a good person.

Foxy

Embarrassing Bodies – Polycystic Ovary Syndrome (PCOS)

Recently PCOS has featured a couple of times on the TV show: “Embarrassing Bodies” here in the UK.  As if having Endometriosis wasn’t bad enough, I’ve got PCOS as well.  I therefore had no problem identifying the PCOS sufferers on the programme.

As with endometriosis, PCOS can take a few years to diagnose.  In my case, I can almost understand the confusion when diagnosing: I don’t have the principal symptom of menstrual disturbance because I’ve been taking the birth control pill for so many years.  However, when I was a young teen, my symptoms included: acne (At one point I was on a course of tetracycline for my acne), a slight excess of hair growth (Hey Mom!  Remember how sensitive I was about developing a moustache when I was still in high school?!), skin tags and dandruff.  As far as I was concerned, my skin and hair couldn’t possibly be related to my ovaries!

Infertility is also a symptom and I was found to have the characteristic multiple small cysts in the ovaries during an ultrasound scan.  The three symptoms that define PCOS are: polycystic ovaries, raised male hormone levels and reduced ovulation.

Other symptoms for less lucky women include more severe male patterned hair growth and male patterned baldness.  For me, the excess dark facial hair and dark back hair were the obvious symptoms that identified the patients on Embarrassing Bodies.  I felt sorry for them and I feel I have to ask: how desperate must you be to go on national television in order to get treatment?  I don’t know why these people cannot seem to get treatment they need from their own doctors but I find it scandalous that someone would feel the need to parade themselves on national TV.  Could it be that people want to raise awareness for their maladies?  Or are they irretrievably stupid?

As with endometriosis, women with PCOS have a higher risk for other illnesses.  For PCOS these include high blood pressure, diabetes, heart disease, depression, cancer of the endometrium (uterine lining) and endometrial cancer (uterus).

While I’m not overweight, obesity is associated with PCOS.  I also have insulin resistance (which I regularly call prediabetes for ease of understanding).  Women with PCOS are at risk of developing type 2 diabetes – particularly if we have a family history of diabetes.

Like endometriosis, there is no cure for PCOS and treatment is normally directed to manifestations of PCOS: I am on a PCOS diet and may be prescribed with Metformin (Glucophage) should my insulin resistance symptoms worsen.  For women with particularly low oestrogen levels, they are given HRT patches.  Unfortunately for me, it was the HRT patches that worsened my endometriosis symptoms and ultimately made me beg for my third laparoscopy to clear the growing endo.  Balance of hormones is, for me, the trick that I’ve had to work to achieve.

Finally, like Endo, PCOS is frightfully common.  Research studies of women who had an ultrasound scan of their ovaries found that up to 1 in 4 women have polycystic ovaries.  Many of these women were otherwise healthy, ovulated normally and did not have high levels of mal hormones.  It is thought that up to 1 in 10 women have polycystic ovary syndrome (i.e. at least two of polycystic ovaries, raised male hormone levels and reduced ovulation) but it is thought that these figures may be higher.

Wishing us all a healthier tomorrow!

Foxy

Endometriosis March: How I live with Endo

How I live with Endo has changed over the years.  When I was 12, the short answer was I didn’t.  I was told by an ignorant doctor that I had “cramps” and that pain was to be expected.  What doctor would consider a child vomiting from pain to be remotely normal??  When I was in my teens I suffered greatly.  I missed some school from pain and when I didn’t stay at home, I would miss key points in classes because I was so zoned out on painkillers.  I don’t really know how I got accepted to university but I must have been smarter than your average bear.

In my 20s I discovered birth control and this effectively masked my symptoms totally.  I had nearly a decade of feeling like a normal woman.  My periods were light and virtually pain-free.  I was relieved from my painful burden.  I did reasonably well at my university course – I even made the dean’s list one semester.  God, I miss those days!!

In my 30s I began to try for babies; what little success I had ended in miscarriage.  The pain was as bad as ever.  I remember once my ex-husband, Ramman, said to me that my pain was ruining any holiday time that we ever had (including when we went to Portugal, the West Country and Greece).  Of course he was insensitive: it’s not as if I was bleeding from the eyes.  He couldn’t see why I was in pain.  When I was finally diagnosed at the age of 35, my ex-husband still couldn’t understand why I was in so much agony.  He made the point that he wasn’t particularly interested in gynaecological matters.  His inability to attempt to sympathise is another reason why he’s now my ex-husband!

I wonder how many other relationships have been destroyed by Endo?

Currently I take birth control for 9 weeks and then allow myself a short period before my lengthened cycle starts again.  It sounds easy enough but PMT can last weeks and I tend to carry a bit of excess water.  However, when faced with the choice of my familiar pain or PMT, I’d rather a bit of PMT (which I treat effectively with Milk Thistle) and feel a bit podgy.  Lucky for me, Helios is sensitive to my plight, he’s never considered me lazy because I need to lay in bed with a hot water bottle; he doesn’t give me any extra stress.  In fact, he told me recently when I was bemoaning my weight/size that I shouldn’t lose any weight: he likes me just how I am.

Foxy

Springing?

My walk to work has finally started to feel as though the seasons are turning.  It’s not British Summertime yet and I’m already walking to the train station in the sunshine.  When I say sunshine I mean at least it is light even if it’s not bright sunshine behind the clouds and rain!  However, the clouds and rain don’t get me down.  The spring bulbs are beginning to push their way to the light and awakening that happy summertime place in me at the same time.  I cannot stress enough just how lovely it is to walk to the station every morning and appreciate everything we have.

In the evenings it is finally light enough that the street lamps haven’t come on when I leave the office for the train.  Funny how something as ordinary as light is so fundamental.

Although my dreams weren’t so bad last night, I’m tired and woolly headed today.  In fact, I’ve been a bit woolly headed for a little while now.  It usually happens in the middle of the afternoon.  I still take Metformin religiously every morning but regularly forget in the evenings.  So, in an effort to feel better, I’ve started taking the Metformin again in the evenings.  However, I still cannot quite work out how Metformin works with my body chemistry.  I expect I’ll have to get retested soon because there are days when I’m walking down the stairs and I worry about falling down.  I’m waiting for my probation period to end before I do anything because I really don’t want to lose this job.  I’m terrified that if they think I’m unhealthy they’ll decide not to keep me – and I really cannot afford another year like last year.  Oh sure, I managed to survive it and keep the flat going but the stress of it was terrible.  Luckily I’m over half way through my probation period now, so I’ll get it sorted as soon as possible.

The good news is that I’m finally in a job where I can easily get through what I need to in a day and remain calm about it all.  Stress and a woolly head do not mix!  It’s on days like today that I’m grateful that I don’t have a more stressful job.  The people here are warm and friendly and seem supportive to one another.  It is such a relief to be in the routine of coming to work and not dreading it.

I wonder sometimes if I’m mistaking my woolly head for fatigue.  It’s difficult to know sometimes if I’m simply tired because I never seem to drift off well.  I never seem to sleep very long and, because I remember so many dreams, I know I don’t get very restful sleep.  Strangely enough, I tend to feel fine by the time I get home.  I wonder if that’s a clue?  I’ll get it sorted soon enough.

Foxy

Monday after the weekend before

This past weekend was spent cleaning, washing the clothes, cooking and sleeping.  I finally feel refreshed after sleeping most of the day away on Sunday.  I didn’t get up until after 10:00 and even had an afternoon nap for almost 2 hours.  Before you think I didn’t sleep Sunday night – I went to bed a little later than usual but slept like a log.

Of course I had my usual mad dreams again.  One of them I had all sorts of my ex-husband’s stuff and I was giving it away to some debt collectors/loan sharks when I saw his niece.  There seemed to be more than one person after her and as I was about to offer my assistance, she pulled out a gun, put it into her mouth and pulled the trigger.  It was awful.  As I woke up I said to her that she felt like a daughter to me – even though she doesn’t and I knew it wasn’t entirely true.

I think some authors/musicians use drugs to add a bit of surrealism to their writing.  I don’t need anything other than a good night’s sleep!  Last night’s dream was just as vivid.  I was looking and looking for a place that had a toilet.  At this point in the afternoon I can’t quite remember what else happened but I did leap out of bed first thing and went to the toilet.

Everyone at work seems to be organising holidays.  I’m trying not to get jealous.  I just don’t think I can afford to get away.  I do get disheartened with the thought of it.  Before I get to get away, I still need to apply for my British Passport (which ought to cost a lot of money).  I do have a small nest-egg at the moment but am uncertain as to what I should spend it on – the car (which needs a bit of work), the plumbing (which may or may not need some work doing), or the fridge (which has started beeping at me – so I presume it needs a bit of work too).  No, I may try and put off getting my British Passport at the moment.  I have to get my priorities right and getting away isn’t high on the list when my obligations are weighing me down.  BUT at the same time I’d love to chuck it all in and go away for a weekend in France again.  Unfortunately, I’m not that kind of girl.  I’m far too sensible.

My monthly cycle is moving onwards, as always.  I have been experiencing intense PMT this month.  I HATE it when Helios is behind me drying the dishes, and he reaches over my shoulder to get the next plate.  I know it’s bad when I just want to snap off his arm like a toothpick.  Not that I’d ever do it, or manage it for that matter, but the wanting is a very bad thing indeed.  I’ve therefore started taking Milk Thistle again.  What a relief.  Today I’m full of the joys of spring.  I’m pleasant to be around and happy to be at work (on a MONDAY of all things)!  Now I know my mom doesn’t like the fact that I love Milk Thistle (she’s read that it’s good for your liver and has nothing to do with PMT) but it does help me cope with my emotions.  Of course, on the other hand, it could be that I need a different kind of birth control pill…  I’ll get around to asking my doctor next time I pop in.

My blouse smells of bacon.  When Helios did the ironing on Sunday afternoon he left all the tops out and they picked up the bacon smell when I was making dinner on Sunday night.  All morning I’ve been sniffing things trying to work out what that smell is and when I finally realised it was ME, well I was not impressed.   It’s a little like wondering who’s trodden in dog poo when you discover that it’s you.  At least dinner was nice: bacon and prawn (brown) pasta with lots and lots of vedge in the sauce.  I’ve got it again for leftovers tonight.

On the bright side, I’ve re-discovered that it’s a small world after all.  I’ve finally been here long enough to run into people who have met my friends from places I used to work and, probably because I work in town now, I’ve been running into people I used to know.

I had two squares of dark, no sugar chocolate at around 10:00 this morning and I’m flagging now.  I’m wondering if it’s the chocolate that’s made me feel like this or if I’m coming down with something (?)  I expect it’s the former because I’ve gone a little woolly headed and feel slightly drunk – a sure sign that I’ve had too much sugar/caffeine.  I’m also yawning and wanting to curl up under the desk for a nap.  The main problem with feeling like this is that, if I were normal, I would reach for a cup of coffee or a bar of chocolate – for a quick jolt.  I can’t do that.  I usually just sit it out.  Luckily I don’t have the kind of job where I’m being watched every second so if I feel a little odd, I can just get on with it.  Or is the cause something to do with my hormones and/or PMT?  Sometimes identifying the source of the problem is as difficult as finding a solution!

The funny thing is that at the weekend, because I get so dog-gone tired of eggs every morning, I’ve taken to having beans on toast for breakfast.  Now, if I’m being particularly strict, I don’t have it because it’s mostly carbohydrate but it hasn’t seemed to effect me.  Of course that’s not now stopping me wondering why I feel odd this afternoon.  Surely my breakfast on Saturday and Sunday isn’t affecting me now.  It must be the two squares of chocolate (no, I didn’t even get to enjoy a whole bar) I treated myself to this morning.  Now, there is a certain logic to having another piece.  For example, and even though I’m not ravenously hungry, I could have another piece or two because I’m already feeling odd and it won’t make me feel better but it would be nice to have.  I won’t have another piece, but I am tempted.

There was snow on the ground this morning.  Well, when I say snow, there was almost a quarter of an inch that made the roads extremely treacherous because no one knows how to drive on snow here.  I had no problems getting to work because 1) I wore my snow shoes and 2) my walk to the station was pretty clear.  It was a bright sunshiny day here and the snow has all melted.  Now that’s my kind of snow.  It makes a brief appearance and makes me smile and then goes away again without being too scary.  Soooooooo much better than having to shovel it!

Foxy