Saturday, 29 March 2014

Lindsay's Story *Guest Blog*

I was diagnosed with PMDD just over a year ago. Over the years, my periods worsened and so did the PMT. I started my periods when I was 9, which of course is ridiculously young. My Mum was an early starter too, so it was inevitable that I would be.

When I was 24, I noticed that something wasn't quite right. I was snappy and took offence at the slightest little thing. My bosses would have a go at me over my attitude, and all I could do was say sorry.

When I came home from working abroad, I saw the nurse as I had lost a tremendous amount of weight, and they were concerned about me. As it turned out, physically I was very well indeed, and I commented to the nurse that I felt there was something seriously wrong. She didn't listen, and instead made me feel like a silly little girl and that it was all in my head.

I told my Mum my concerns and whilst she could sympathise, there was little she could do. Having suffered depression in the past, I can recognise signs of depression, but, this was something that I could not comprehend.

Over the years, I went from being weepy (you know like when you cry because there are no cheese and onion crisps in the cupboard!) to becoming nasty and violent. When I was ovulating and three days before my period, I became a monster. I distinctly remember it was the Queens Diamond Jubilee, and I was watching it on tv crying my eyes out and being very angry.

I took two diazepam to calm me down (which I was actually given for symptoms of irritable bowel syndrome believe it or not) alas, they didn't help, and made me so spaced out I couldn't talk or walk.

Another time I was talking to my boyfriend on the phone whilst he was at work. I was sat at the top of the stairs telling him I wanted to kill myself and crying so hard I was retching. My boyfriend stayed with me and managed to calm me down, but, it took a long time.

There have been more occasions of this nature, however, I am sure you can see the pattern emerging. Most recently, my boyfriend has had to restrain me so I wouldn't pick the knife up that I was trying to grab, as I was so utterly in despair that I wanted to end it all.

When I turned 27, things were only getting worse. I was alienating my family and my poor boyfriend didn't have a clue what version of Lindsay he was going to encounter when he saw me. As you can see from the picture, I am a generally happy person, but this thing was robbing me of my life and my relationship.

In a last ditch attempt to get some help, I went to see my GP. He was brilliant, and recognised that I did indeed need help. He prescribed Citalopram to be taken from day 15 to day 28, as a trial to see if this helped and immediately diagnosed PMDD. I realise that not all GP's are as helpful as mine is, however, if you are know something is wrong, please tell them. 

I have been on these tablets for approximately eight months now and, there is a difference. I do still have bad days, but, it does seem to be getting better. I suppose the purpose of me telling you this story, is, I don't want anyone to feel the way I did.

There is help out there, and PMDD is recognized as an illness, and not just something to be brushed aside, and dismissed as PMT. Please don't feel like you have anything to be ashamed of, you don't. I refuse to let this ruin my life and my relationship, and I really hope my story brings comfort and more importantly help.

Lindsay, UK x

If you would like to share your story, please contact Cat.

Friday, 28 March 2014

Mood Charts and Tracking Symptoms

(The following has been revised and updated from my original mood charts post)
What do you do if you think you have PMDD?  What if you've spotted the symptoms and a pattern, but your doctor doesn't know about PMDD or has never mentioned it?
The only way to convince anyone you are suffering from cyclical symptoms is by filling in a mood chart.

I say convince, as a lot of the time, the fear is that no one is going to believe you.  If you have suffered for many years, and no medical professional has ever asked you if there is a pattern, then how do YOU know better than your doctor?  Well, you DO know better than your doctor when it comes to symptoms, but short of your doctore living with your for a month, you have to be able to prove what is going on.  If you see a pattern forming, then all you have to do is get a mood chart filled out over 3 months, so you can SHOW your GP how it comes and goes.
By noting your symptoms and severity, along with your menstrual cycle, it is easier to see patterns forming and for doctors to diagnose PMDD.  No one can deny a set of painstakingly filled in mood charts that over 3 months, show a definite connnection to your menstrual cycle.

You have to be strict with yourself and make sure you do this EVERYDAY, or at the very least the morning after, trying to be as accurate about how you felt as possible.  Make notes of the boxes don't explain it well enough, or keep an 'emotions' diary and actually write small notes about your day.  That way you can often find and connect any outside influence triggers that increase the PMDD symptoms.
There are many free resources online, including printable mood charts. Printable worked for me as I filled it in in the evening and could keep it safe, or up on the kitchen cupboard door to remind me. It also means you automatically have something to show your doctor.

I used the chart in the book by Diana Dell - The PMDD Phenomenom, as it gave me the option to fill in how bad things were too (by colouring 1, 2 or 3 boxes), so rather than just a yes or no, I could monitor slightly off moods to more intense, severe moods.  This book was the first book I read about PMDD.  I think it is out of print, but you may be able to find a second hand copy).  It's a good book, although may be a little dated now.  Having said that, little has changed since it was published.
Dont be put off by charts that are called Bi-polar or depression mood charts. It's not the name that matters, but the information you track. Just find a chart that works for you.
You may want to try an online/interactive mood charts. Some require membership, but some are free. If you are at the computer a lot, then this might be a better way for you to record you moods each day. Obviously this means making sure you can print everything out to take to the doctors, and that you will always have access to a computer to keep it updated. I can't stress the importance of filling everything in EVERYDAY for at least 3 months. It's the best way for an outsider to know whats been going on up in there, and help you to diagnose your condition.
There is a very modern way of tracking your moods, if you happen to be the proud owner of an iPhone or Smartphone! Just search the app store for 'mood tracker', 'iPeriod' or 'period tracker' and take your pick! I have used Period Tracker (paid version), and it's very simple to use. It's hard to find a tracker that does all the things you want, but it worked pretty good for me. I now have an android phone and am using Womanlog Pro, but there are many others, such as Ovuview, Pink Pad and My period and Ovulation. Most have free downloads, I advise you trial the free version before you pay for one, just to make sure it works for you.
As a side note, my husband downloaded an app called The PMS Alert  I tell him my first day of my period and he taps it into his phone.  He now gets a phone alert when I am entering into my pre menstrual phase, and it's pretty accurate.  It gives him a heads up without me having to say anything.  What I really need now is for one that alerts him to ovulation time, as that can be a challenging time for me to, but all in all, the The PMS Alert app has really helped.
With so many options, we are spoilt for choice! There is definately no excuse NOT to be tracking your moods and symptoms.... so, Get tracking!  I have included a few links, but there are many many more out there.  I hope to include a printable chart from this site in the near future.
Printable

Online
Mood Tracker - Free
NAPS Interactive Mood Chart - Free, membership required.
My Monthly Cycles - Paid subscription for good resources, Limited free account.


PMDD Symptom List

PMDD Symptom list - Diagnosis criteria

To be diagnosed with PMDD , a woman must suffer from at least four of the following 11 symptoms:
  • markedly depressed mood
  • marked anxiety or tension
  • persistent irritability or anger
  • difficulty in concentrating
  • decreased interest in usual activities
  • noticeable lack of energy
  • marked change in appetite
  • insomnia or hypersomnia
  • sense of being overwhelmed or out of control
  • sudden sadness or depression
  • physical symptoms such as joint pains, headaches, breast tenderness or "bloating."
The symptoms must occur a week before a menstrual cycle begins and disappear a few days after the menstrual cycle starts. The symptoms must recur in at least two consecutive menstrual cycles and must also "markedly interfere" with work, basic functioning or social relationships.

(Information from NAPS)

These are the most common PMS symptoms featured on the NHS website.  Women with PMDD often suffer from more than one of the following on top of the PMDD symptoms.

Physical PMS symptoms

  • fluid retention and feeling bloated
  • pain and discomfort in your abdomen (tummy)
  • headaches 
  • changes to your skin and hair
  • backache
  • muscle and joint pain
  • breast tenderness
  • insomnia (trouble sleeping)
  • dizziness
  • tiredness
  • nausea
  • weight gain (up to 1kg)

Psychological PMS symptoms

  • mood swings
  • feeling upset or emotional
  • feeling irritable or angry
  • depressed mood
  • crying and tearfulness
  • anxiety 
  • difficulty concentrating
  • confusion and forgetfulness
  • restlessness
  • decreased self-esteem

Behavioural PMS symptoms

  • loss of libido (loss of interest in sex)
  • appetite changes or food cravings

Any chronic (long-term) illnesses, such as asthma or migraine, may get worse.  This is called Pre Menstrual Exacerbation, PME.
As depression is a common symptom of PMDD, it is possible that a woman with PMDD may have thoughts about suicide.
PMDD can be particularly difficult to deal with because it can have a negative effect on your daily life and relationships. See your GP if you are experiencing severe symptoms.
Read more about treating PMS and PMDD (link takes you to NHS website).





PMDDAUK Closing

It is with sadness that I have to tell you that the PMDD Awareness UK website will be closing.  Other commitments and developments in my life means I can no longer maintain this website along with my other projects.

All donated stories will be re-published here over the coming weeks.  Thank you to everyone who helped, shared stories and supported this venture.  Hopefully we will see change for PMDD sufferers in the future.

I will continue to accept stories and publish them here, so feel free to get in touch if you'd like to share something via this blog.

If there is anything good about having to close down the site it's that I no longer suffer in the same way as I used to.  I have got my life back.  I am not cured or mood free, but I am persuing goals I never thought would happen, I am enjoying life, and more often happy than not.

I hope this can at least give others hope that life isn't over if you have PMDD.  Things change and no matter how awful things are, it's always worth the fight to keep going.

Thank you again to all who have supported me and PMDDAUK.  It may not have worked out, or lasted very long, but I tried.  Life changes, things move on, and all we can do is move with it.

With lots of love

Cat

To keep up with all my new projects, please visit my art website, www.chaoticat.com or Artist Facebook Page. xx


Thursday, 16 January 2014

How do you feel about being a woman?

Guest blogger Emma shares with us some thoughts about the bigger picture of PMDD.  First published in one of my support groups.. we all thought it too good not to share!

The fact is, I hate being a woman, always have, might always will. I hate it so much that for a brief moment years ago, I even contemplated turning into a man. I wished I had been born a man, because they have it so bloody easy, and I almost resent them for just being men and having it so easy. Women have so much to put up with in their lives, so much shit to have to go through. Not only do men have it easy, but they don't realise how easy they have it....I find that annoying too. 

I actually get quite envious of my husband because he has been able to live his life without any bother in the world. Everyday floats into the next. He can complete his projects, because he has mentally got the stamina and the motivation to do it. He puts his head on the pillow, and within seconds he is snoring, without a care in the world. Where as, as soon as I think I'm getting somewhere in life, (in my 2 weeks of feeling well) even if it's just getting into a routine with housework, or being able to get up in the morning feeling happy and joyful, something soon comes back and tells me I can't do it, and stops me from wanting to, and stops me from being able to. I have had a lifetime of feeling depressed, with tiny bits of happiness and glimpses of what life could be like if I was free to feel joy constantly, like my husband can.

Women throughout the ages have had it so hard. It has been a constant battle from the word dot (...or so it seems. It would be interesting to see at what point it was in our ancient past when being a women became in issue). Women have always been the ones who never had any rights, who were always disgraced if they stepped out of line. Who were, and still are, taken advantage of. Women have always been nothing more than objects for men to own. If a women fell pregnant out of wedlock, or had an affair whilst married and subsequently gave birth to a bastard child, society (mainly men) punished her, and she would live for ever more in disgrace. Often sent to the workhouses, and made to wear Black and Yellow striped uniform to warn everyone of their disgraceful behaviour, and having their children taken off them because they are classed as not being good enough to care for their children anymore due to their disgraceful behaviour.

Yet it is perfectly acceptable for men to have affairs, to 'spread their seed', to have their cake and eat it, and in some countries, have several wives!!! Why can't women be like that? Why can't women have several husbands? Men are classed as being a bit of a stud when he sleeps around. Yet women are labelled as whores. Why do we have to be the whores? Why do we have to have the crap end of the deal with everything?

Women were institutionalized in the olden days, because they were labelled insane, when really all that was wrong was a bit of PMT, or serious hormonal issues. Women's issues have always been a taboo, and women are looked down upon as the weaker sex. Menstruation is classed as dirty, and is seen as a 'problem', even an illness. 

Women were burnt at stakes, Drowned in the rivers, and hanged because they were supposedly witches.....Lordy knows, I would have been burnt a long time ago if these present days were anything like the past.
Even today, women are stoned to death because she is not allowed to have any feelings, or any rights for herself. She is still owned in some cultures, and women are still being sold as we speak, like objects. Families choosing who and when their daughters should marry. In some countries, as soon as a girl starts her periods, she is sold to a pedophile to get married. Girls even younger, 7 years old for god sake, are being sold for marriage to these sick bastards. Women are used and abused, because men think they can, and because they think they have a god given right to do as they please. 

But when anything comes down to blame, it's almost always the woman that takes it all, it's almost always the woman that looks bad. She is the one that has sinned, and not the man.

All the pain we have to go through, all the physical changes we have to put up with for the majority of our lives, the pain of child birth, the ever lasting damage it causes our bodies. And then there's all the household chores, and the fact that the woman has duties, to her husband, and her children.The physical abuse, the mental abuse, making the woman feel vulnerable and powerless.

My husband is amazing, and doesn't expect anything from me. But that's because he's my equal, and I just think I am lucky. Although I have had an idiot for a partner in my past, and I was lucky enough to see sense and get out while I could. Not before he created some damage though one way or another. I know so many men out there too who are complete twats to their wives, or girlfriends, because they believe that the woman's place is in the home, doing all their duties. 

I just wonder whether any of these issues affect other women, or is it just me? 
.....If we dislike being women, for what ever reason, then maybe we are unconsciously rejecting the natural changes that being a woman is all about....do you see what I mean?

I was told by someone last year that I will be coming into 'my power', but I never quite understood what was meant. I think I understand now. The power that was meant is the feminine power that we all hold within ourselves. The stuff we are made of, but which has been suppressed by men. If you think about it, with almost every species in the world, it is always the females that lead. She dominates the males to get what she wants. Ants, for example, get their wings in order to find a queen to mate with her. But as soon as he has mated, he dies, because he is no longer needed. The rest of the males are workers for the queen. You don't ever find a 'King Bee', only Queens, because she is the one with the greater strength to lead and carry on. 
We also have the strength to lead, and be great. We are built strong, so we can carry our babies and love them unconditionally. We have the strength to face the pain we endure during birth. I think we're all pretty much in agreement that men wouldn't stand a chance. They say that birth is the closest point to death a women will ever be (without dying of course), so we are built physically and mentally strong enough to be more than capable to do it over and over again. We have the power, but it has been suppressed for centuries. But now it's time to take it back.

I think I need to take back my power now. I did have a taste of it last year, and my Yoga helped a lot. I just need to believe in myself, and know that the power exists within me.

by Emma PF

Monday, 6 January 2014

Endorse me!

Hello there lovely readers!

I currently have 55 endorsements for the WEGO Health Activist Awards 2014.
There are 14 different awards and I have amazingly been nominated for FOUR!



Simply click THIS LINK! or the image above to go to my WEGO profile page.  When you click on the 'Endorse me' button, you can use a drop down menu in the form to endorse me for one, or all of the above nominations.  Once you've entered your details, you don't have to do it again for each one, just select a different award.

It would mean so much to win just one of these awards!  Share with your friends!

You can even endorse me more than once, in fact the limit is once per day!  The winners are notified in March, so there is plenty of time to get involved!

Tuesday, 17 December 2013

This is not the end.

It's been a while since I've written a blog, and there are many reasons for this. Life stuff takes over sometimes and attention needs to be elsewhere, but alongside this, I have been coming to some very different conclusions about my own PMDD. I have mentioned before about how hard it is to explain and express all the things that have changed within me since I started this blog, and I have felt a real inner conflict for many months now.

Some of the things I have learned means my view of PMDD has changed massively. When I started this blog, and began sharing my story and understandings, I was in a dark place. This was due to many things alongside PMDD. PMDD was not solely responsible for my life feeling too hard to bear. I can look back and see that now, but when you are caught up in the daily drama, it's easy to feel like PMDD is to blame for all of life's shortcomings. In 5 years, my life has changed dramatically, and in those years I have found friends, fellow sufferers and other people like me.

When I say 'other people like me' I mean those who also have PMDD, but are choosing to work spiritually with it rather than continue down the route of believing that we need to be 'fixed' or that there is something inherently wrong with us.

I no longer believe there is anything wrong with me. The past 5 years have taken me to the depths of despair, but they have also been so valuable. PMDD has actually been the most powerful guide I could have had. I know many readers may think I've lost the plot, or that maybe, I could never have really suffered with PMDD to begin with, and that's fine. You can judge me however you like.

I come across a lot of women through the PMDD community page, and many want a 'cure'. Many want a magic tablet to make everything better. They want labels and recognition for that label. PMDD is just a label. It's the label doctors give to a woman who is sensitive to the hormonal changes in the body, and when those hormonal changes create a string of infinite symptoms that becomes life destroying. Some people want it to be a mental disorder, some want it to be an endocrine disorder and some believe it originates in the gut. I shared an article recently about PMDD being labelled a mental disorder, and someone commented saying that if it was all in the mind then how did it a hysterectomy cure her? Thing is, the brain controls everything, it controls the production of hormones, and it is affected by hormones. Hysterectomy is the ultimate off switch. The brain no longer needs to tell the body to make those hormones. Having a hysterectomy may be the most successful way of treating PMDD to date, but it is an extreme measure to take, especially if you want children and haven't been able to conceive. So it may be effective, but is it the best way? Swapping PMDD for early menopause has never been something I have wanted to do. I know a few women who have had their PMDD 'cured' by means of hysterectomy, some have had other problems occur, some haven't, but on the most part, I hear many women say they are glad to have had it done, and I for one am happy that they are no longer suffering and have a chance at a new life without PMDD. There are many different views on the causes of PMDD. The only I would like to say for certain is it is a imbalance in the body and mind which can have devastating effects.

We all need more research to be done. Its almost 2014 and we still don't fully understand the workings of the female body, we don't know why hormones create such illusions and dysphoria in the brain. We don't know the root cause of PMDD (if there is one). There is research being done, all be it a few small studies here and there, but still not enough is known. The doctors don't understand it, and there are very few specialists. I'd like to point out that we are talking about the medical realm right now, so when I say doctors and specialists, I mean the people conventionally trained in conventional medicine. Doctors, more often than not, want to help, but they are in the dark too. They have drugs that are unlicensed for PMDD but treat conditions similar to PMDD, so that's what we get. They try, but always remember that the doctors are just ONE aspect or avenue to healing, and often, they are working with pharmaceutical companies pushing their products, getting people reliant on yet another expensive drug. They will look at PMDD ONE way, and often dismiss others.

Turning my back on medication was the best thing I ever did. Saying away from the health services unless absolutely necessary. This is my story, my reality, I am not suggesting anyone do the same. This is what's ended up silencing me so often. How do I share my healing and this amazing transition when it is so personal to me?

I think that people have their own realities and most tend to stay within certain ideals. If it is your belief that taking a pill can cure you, then maybe you will find peace or ways to manage PMDD by using medication. If your belief is that removing your womb will cure the problem then you are more likely to go for that option when your symptoms are out of control. If you believe that talking therapy and mind techniques such as CBT is the way then you may find that successful for you. You also have to factor in what 'pay offs' there are with each belief. Medication will most likely come with side effects. Surgery might mean HRT. Talking therapies may not help physical symptoms.

My belief is that my body can create illness. That the mind and body are closely interlinked and often, an illness in the body is connected to, maybe even created by the brain. If my dis-ease in the body is stemming from dis-ease in the brain then surely, healing the brain can heal the body? By healing the brain, or re-training the brain, we can break out of the cyclical patterns that PMDD can put us in. My life 5 years ago was chaotic (it still is.. but in a good way nowadays) There were many things going on that would make the sanest and strongest of women cry and feel like life wasn't worth living.

PMDD almost responds to how well you are living your life. For me, being really unwell is a measure of the stress in my life at that moment. I've spent 3 years observing my moods and monthly cycles. I am not free of mood swings, manic craziness and deep depression, but I am free of almost all of the negative self beliefs I held about myself, the extra nastiness that clings onto you after an 'episode'. I don't spend days beating myself up, telling myself how shit I am, convincing myself I am not loved or wanted like I used to. I get up, take a deep breath and get on with life again. I've manage to reduce the drama of PMDD. I'm learning how to communicate better, how to avert disaster by using the right words. Things that seem so simple, yet these simple things really have changed my life.

5 years ago I didn't really have any hopes for the future, I didn't know where I was going, what I wanted. Two young children and a mood disorder that seemed to ruin everything. I hated life. I guess it's something that all young mums go through at some point. The feeling like you'll never have a career, that the things you are interested in are at the bottom of the pile of importance. I was also in a terrible relationship and hadn't dealt with all my childhood stuff. Add PMDD symptoms at their worst and BAM, there I was. Now, it seems logical looking back, that my symptoms were at their worst because of the state my life was in, but you don't know when your are in that moment that this is the worst moment you'll ever have, or that things will even change. You get locked into a belief that things will stay the same forever, but that is the only thing of absolute certainty, everything changes, nothing stays the same.

I now live day to day with my 'PMDD'. On the most part I am fine, although I have noticed I seem to have 2 almighty crashes a year around spring and autumn, which corresponds to pre-ovulation (spring) and pre-menstruation (autumn). The only other times I crash is when life gets really stressful. Stress is relative. What I can cope with is different to what another can cope with. Life has been tough this year and I have had to test my methods against some really challenging situations. Thankfully, I came through it all, I survived, and any women PMDD or not, would have felt the pressure. When the darkness or craziness hits, I hold on. I know it will pass, I use the things I know will help me.

All this change however does mean saying goodbye to certain things. Blogging about my PMDD helped through the worst times. Writing articles and researching helped develop my understanding and open my mind to new ideas. Meeting so many lovely women through the blog and on Facebook has been the best return for the hours spent.

I now feel like I am well enough to start building a career, and wheels have been in motion for a while. PMDD and depression can mean you spend long periods of time looking at your life and working out what it is you want to do. I realised that I want my life to be about creating, about art, about teaching and living a mindful life. I don't want to spend my hours anymore focusing on PMDD in a way that pleases the masses. I don't want to have to try and explain myself to people who don't really care.
I worry that I will upset people, because my views have changed. I started a campaign to get PMDD recognised, because for that medical world, it NEEDS to be, but at the same time, I no longer want to carry the label. I use the label for society's sake, to give them something they can understand, but my inner belief is not that I have some terrible disorder that I have no control over. I have something that not many people can begin to comprehend. I have something that can actually be very useful to me.

Running the groups on FB and interacting with people on the community page can be really stressful. It takes my time and focus away from the positive things in my life, so these days I tend to limit my participation. I often feel bad for this, but I have to let go and move on. I find few people ready to even contemplate the possibility that they have the power to control and manage PMDD without meds, anything that I post that isn't mainstream gets jumped on, and my motives questioned. I have only ever been a Sharer Of Information! I share more things I have no personal interest in than things that I believe in... and this is where things have to change. I can't even stand the name of this blog anymore! MY PMDD! HA! I even claimed it as mine... well it isn't any longer.

I have to find my voice within the alternative PMDD realm and find the others like me. I have plans, but there is still some way to go, and my main priority is my art, spirituality and teaching. Thats what I want to spend my time on. I can no longer spend time on projects that feel like I'm banging my head against a brick wall. For now, I am in control and that means we go full steam ahead on projects. My cyclical energy still means I have downtime every month, but y'know, I think I'm healthier for it, and there are certainly less battles. I will write here occasionally, but the PMDD Awareness site is going to be taken down. I did it because I could, and because I thought it was needed and helpful, but I cannot maintain it and promote it. Anything I do from now on with regard to PMDD is gonna be a reflection of my beliefs and experiences, for other women out there who want to try managing their moods in an alternative way. This blog will stay as is and I may update from time to time to let you know about any new projects I may have in the future, but essentially, this is the end of an era.

I've said it before and I'll say it again.. Thank you for all the support you've all given me over the years, I wouldn't be here now if it weren't for each and every interaction I ever had through this blog and Facebook.

As always... thanks for reading.


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