Friday, 29 March 2013

New PMDD Website now LIVE!

Finally!

Six months in the creation (slow and steady wins the race) and here it is!

www.pmddawareness.co.uk

Go check it out!




Sunday, 24 March 2013

To my friends...

(written to the friends close to me in real life and on Facebook...  wanted to share here with a wider audience and explain why I have been a bit quiet with posts, and why I may not have responded to messages/emails recently)
 
The whole month of March has been a struggle. This past week being (hopefully) the lowest I could get.
 
Lots of you, my friends, have been worried, and I feel terrible for worrying you or causing any of you upset. This guilt often means I start to spiral inwards even more, and the negative feelings grow. It has been a long time since I have written like this, but I feel it's the only way to try and help myself, and others, understand.
 
As most of you know, I have a mood/hormone disorder... at least, that's how you will understand it in the 'normal' way. The label Pre Menstrual Dysphoric Disorder is something I am trying to move away from, but it's the easier label to give when trying to explain what I go through. It's medical. It's a real disorder. No one knows what causes it or how best to treat it. It's still not widely known about, or should I say, it's widely misdiagnosed as bipolar, borderline personality disorder, depression... Many sufferers feel schizophrenic, although, unlike schizophrenia, we rarely lose all concept of one personality in favour of the other, but rather stay in state of transition, the battle, the fight between two aspects of the self. We also tend to remain consciously aware of all our actions even when we feel like we have no control over them. PMDD cycles are monthly and therefore, when the symptoms are particularly bad, they can really take their toll on your physical and mental health.
 
So I have that going on... I hit challenging times almost every month, but since coming off all medications etc I have got a much better hold on this. I have learned how to manage my month, my LIFE, around it. I know my energy changes and fluctuates. There are better times of the month for socialising and times when I have to hide away. I know my cycle well, and can predict when I will have enough energy to go out and be social and when I will be struggling with tiredness and need to rest.
 
This week however, I was not at a point in my cycle when I should be going through this stuff. Day 7 is usually a time of increasing energy, busy-ness, lots of ideas and planning.. becoming more social etc I had had a particularly crap cycle anyway, coupled with my birthday, which this year I was really not up for celebrating.. the 'depression' had started right back then. The negativity swallowed me up. I couldn't see the point in trying. I was easily angered, wound up, hurt, upset... I did a lot of shouting and stamping about. When these times happen, it's like I have left my body and am outside watching everything unfold. I upset my children... I pushed my man away. I rejected my friends offers of help. The negative thoughts tell me that it's all false. No one really wants to help. Everyone is judging. People think I am weird, a pain in the ass, over dramatic... it's like I can hear all the sighs of everyone when they see another negative status message. Even with lots of PMDD friends around, who I know will understand, I can't connect. I can't talk.
It's like being bound, gagged, blindfolded and thrown into a pit of terror. We would call this dysphoria, which is commonly known to include persecutory feelings and suicidal tendencies.
 
For 4 days I barely ate a thing. I went from not being able to get out of bed despite sleeping for hours and hours, to being unable to sleep and staying up all night. I couldn't deal with the kids. By the end of the week they were both avoiding me and trying to stay out of my way. Rhiannon doing an amazing job of being a stand in mum for Fae while I am emotionally unavailable. All of it kills me emotionally.. I do and say things I normally wouldn't. It makes me feel like a terrible person...
I've had uncontrollable flashbacks to times in my life when I was going through hell, all the emotions from those times surface. I rid myself of one thought only to be bombarded with more negative imagery and feelings. Feelings of panic and palpitations which can last all day. Fear of having to leave the house and face anyone was too much and I spent a lot of time in the dark, in my bedroom. Thoughts of escaping... running away... hurting myself. I did not get the usual suicidal feelings this time, but the desire to destroy, cause myself pain were very strong. THAT'S when keeping yourself locked away in a bedroom is a good idea. My mind was taking me to all sorts of crazy places. Should I cut off all my dreads? should I destroy the last painting I created? I could burn myself, crash the car, find something sharp... drink a bottle of vodka... (yes to me, alcohol is a form of self destruction.. it makes me ill and so would achieve the desired result). All I have to do is hang on until it passes. Wait, till the demon leaves me. Try and get through without letting any of these impulses take over. It's not easy, and as yet, I haven't figured out what I should do in these situations. What I need is a place to go while going through it all, away from my friends and family.. but it's not likely to ever be possible, so hey, you just gotta do what you can. My body has been curled up and tense all week, the pain in my back and shoulders from the tension is awful. The exhaustion from the endless thoughts and visions knocks me for six.
 
So, if it's happening out of cycle, at a time when I would not expect it, then I have to look at what else is going on. I follow a shamanic path. I always have, although when I was younger it took the form of witchcraft. Moving on from the restrictions and rules that are set when following such belief systems, led me to where I am now. As a woman, my cycle is shamanic in itself. Every woman has a direct connection to the Earth and the Moon. The menstrual cycle echoes the seasons of the year in it's energetic changes and also follows the phases of the moon. We are currently entering Spring. Pre ovulation. It's a transition time. The Spring Equinox this week symbolises this. A time when the Sun and the Moon are in balance, but also, a time when one half of the world welcomes in Spring and the other half kisses goodbye to Summer and is seeing in the Autumn. A duality, a time of balance and extremes all at the same time. Confusing eh?
 
I digress. In following a shamanic path, in dedicating myself to it, in stepping deeper into the mysteries I have to allow the necessary shifts to occur within me. Thing is, you don't get an email telling you you are about to go through another shamanic healing process... To be honest, I wasn't overly familiar with shamanic initiatory illness and it's symptoms until now, but the more I look at what is going on right now, the more it makes sense. I could just call it a breakdown, a PMDD episode that has arisen due to the stresses and strains of life, the terrible British weather and SAD, but that is almost dismissing the importance of these happenings (It does make it easier for others to understand, especially those who think shamanism etc is a load of bollox). The healing that follows the darkest times are invaluable... IF you can develop an understanding of why it's happened.
 
LOOK at the symptoms for shamanic initiatory illness... (these can also be symptoms of coming off psychiatric meds or the rising of the kundalini)
 
Shaking, vibration, altered states of consciousness ranging from comatose to euphoric, extremely long periods of insomnia or hypersomnia, inability to tolerate eating, food cravings, headaches, nausea and vomiting, nightmares, suicidality, pain, heart palpitations, fear of going crazy, feeling tormented, terror, being bed-ridden, agitation, weakness, cognitive confusion, seizures, muscular rigidity, tingling, impaired vision, hearing unusual sounds, seeing lights, other hallucinations or visions, obsessive or impulsive behavior, rages, crying jags, severe depression, vertigo, seeming drunk without taking any substance, exhaustion, chills, heat, sweating, tendency to withdrawal and agoraphobia.
(http://survivingantidepressants.org/index.php?/topic/91-kundalini-shamanic-initiatory-illness/)
 
I can tick off many of the above and have just experienced them. There is much documented about how shamans view schizophrenia and episodes like the one I have just described. In fact such things as schizophrenia do not exist in shamanic tribes. Shamans would view these things as a spirit trying to contact the living world, or a possession of a body by a spirit. Likewise, PMS or PMDD would not exist in these circles either. Women's menstruation was seen as a very powerful thing, and an essential part of their (and the tribe's) spiritual well being. Menstruation, itself, is an altered state of being/consciousness. You can read more about how shaman's deal with mental illness in the following link. It's an amazing article. http://www.jaysongaddis.com/2010/11/the-shamanic-view-of-mental-illness/
 
I can't say for sure that this is some kind of shamanic thing going on... but I also don't class myself as truly mentally ill. I am also not a flaky character that can't deal with the things life throws at her, as I have gone through a whole heap of difficult situations and life traumas over the years and am still here to tell the tale. My counselor, a few sessions in, told me she is amazed I am still here. My reply, is always... my kids keep me here. They are the reason I continue to live out my life on this planet... that and the fact that I have been blessed with a life, so really, I better make the most of it, however alien the world seems, and however difficult this particular life seems to be. Life, now, is actually better that it has ever been.. a gorgeous, loving and understanding husband, better relationships with family and friends, two amazing children and my art, my writing, the wonderful web, and a future that hopefully holds some great things.
 
About 15 years ago, during another challenging time of my life, my tarot teacher once said to me 'The hardest steel is tempered in the hottest fire'. That has stuck with me ever since. To be strong, to understand another person's pain, to feel empathy, to be able to help, heal, you need to undergo it yourself. I never consciously asked for this path, it just is... I find most of my life is 'out of my hands' these days. I rely on my instinct, on catching the wave and feeling the flow. I guess that with that comes the storms that turn the boat over, throw you into the water and leave you fighting for your life. What I wish though is that it didn't affect my family and friendships so much. 
 
So I'm doing my best. To understand, to learn, to develop and grow. I wanted to share all this stuff as I do freak out some times and think that everyone must think I am completely nuts, or just a depressive personality with no joy or fun, but that's not the case. I'm just different, and dealing with some really weird shit that no body gave me a manual for! Thank you to everyone who contacted me with kind words and who offered the hand of support. I'm sorry I couldn't accept, and especially sorry if my actions or words hurt or upset anyone...
 
I'm still 'coming round', settling down. It takes a while to flush out the adrenaline and anxiety, it takes even longer to get rid of the guilt and the feeling of embarrassment and shame, but writing this, focusing on some art will help, and hopefully I will re-integrate what I've learned through all this and next time wont be so bad... I have no idea how many of these I need to go through, but I couldn't actually begin to count the times that this sort of thing has happened. The last time was 6 months ago at the Autumn Equinox (pattern? who knows!)
 
Love to you all, and thank you for being a friend, in whatever capacity... (cyber, real life.. it's all the same)
 
Cat xx

Tuesday, 12 March 2013

NAPS Study Day

National Association for Pre menstrual Syndrome (NAPS)
Study Day on Women's Health - 1st March 2013

Women and their Hormones

I was very kindly invited along to the recent NAPS Study day on Women's Health in Southampton. As a PMS Lay Champion, PMDD sufferer and Health Activist I was permitted to attend the event which is usually only for medical professionals and trainee's. It was an amazing opportunity for me to get a window into what goes on behind the scenes and a perfect opportunity to share with others and let them know what happens at these things!  Thankfully, I was in the ovulatory phase of my cycle, and so was able to attend. Had the conference been held a week later, I may not have made it!

The venue (The Hub Theatre in Southampton) was very nice. Bright, clean and welcoming. It was really lovely to meet Jackie, the CEO of NAPS, as we had spoken via email quite a few times. I was a bit nervous, but after a coffee and a chat with Jackie, It felt good to be there.

Talks started with Mr Nick Panay, Consultant Gynaecologist and the Chairman of NAPS. After an introduction to the day and NAPS, he went on to talk us all through the NAPS guidelines on the management of PMS. These guidelines are available for £5 from the NAPS website and provide a very useful tool for GP's and patients when devising plans for managing PMS. Nick touched on the history of PMS, quoting Hippocrates and that the first time anyone made any connections between PMS and cyclical ovarian activity was in 1873 by Henry Maudsley. In the 19th century many called it 'Menstrual madness' and believed it was brought on by women reading serious books or playing music! By 1931 the term Pre Menstrual Tension was coined and in 1953, Dalton and Greene introduced the term Pre Menstrual Syndrome. In 1957 Katharina Dalton set up the first ever PMS clinic. The National Association of Pre menstrual Syndrome was founded by Dalton in 1983 and 5 years later, Professor John Studd discovered that menstruation was not an essential feature of PMS and began to use the term Ovarian Cycle Syndrome. Despite the recognition in the medical profession, the stereotypes, myths and taboos that surround menstruation continue to this day, with negative articles in women's magazines still being published. You would have thought that with all the research and support from medical professionals that this would no longer happen, but unfortunately PMS is still the butt of many jokes and is not taken seriously by the general population.

Mr Panay's talk was followed by Dr Carrie Sadler (GP and Associate Specialist in Reproductive health) and Ms Annie Hawkins (O+G Locum Consultant at Chelsea and Westminster Hospital) who shared results taken from the Southampton Women's Survey and the NAPS Survey 2011. It was interesting to know that such a study had taken place. The Southampton Women's Survey started in the 1990's and interviewed over 12000 non pregnant women and included questions about PMS. The survey also followed these women through pregnancy and the development of their children. The most interesting conclusion was that women were less likely to have symptoms if they had been educated about the effects of the menstrual cycle and how to manage their symptoms. It was also noted that stress was a major factor in the severity of symptoms. Both surveys showed the need for more research and funding for raising awareness.

I would like to see more education for teenage girls in schools. If we educated our daughters about the menstrual cycle and how to see the early warning signs that their menstrual cycle may be becoming troublesome, I think we could reduce the incidences of extreme PMS or PMDD. Girls learn the basic bodily functions in school, and how to deal with having a period, but who talks to them about how they might FEEL? From personal experience, many women are unaware of what a detrimental effect the menstrual cycle can have on their mental health and well being and many who suffer from PMDD feel like they are actually 'going mad' or suffering from a severe mental health problem. If these women had known that the menstrual cycle CAN cause such severe problems I think we could see more women taking more control of their own bodies and cyclical problems, maybe even 'nipping it in the bud' before PMS (which can be treated relatively easily) develops into an extreme disorder. Stress is the main enemy of women who suffer from PMS, PMDD, fertility problems and sexual problems. This point was re-iterated many times throughout all the lectures.

Next up was Dr Alain Gregoire, (Consultant Psychiatrist at Southampton) talking about giving good ante-natal and post natal care. Dr Gregoire was an entertaining animated speaker who introduced us to a variety of facts regarding the research done on the effects of depression in pregnancy and how it can affect the child later on in life. He also noted that despite the research proving that mothers pre disposed to depression were highly likely to have problems post natally, that very little was in place to support these mothers. It made me realise that the doctors and specialists are probably just as frustrated with the way things are here in the UK as the patients themselves, and that many are working hard to change things. They are limited by funding, lack of research and all the red tape that surrounds working within the medical profession.

Ms Dani Singer, Adult Psychotherapist, London talked about the psychological aspects of premature ovarian sufficiency and highlighted the need for sensitive labelling of such disorders. Using words such as failure or dysfunction can create a negative reaction in the patient and lead to a misunderstanding of the problem itself. Labels are not always helpful to the condition. I had noted that Mr Nick Panay had mentioned that PMDD was the American term for Extreme PMS, and in the UK, doctors prefer the term Extreme PMS. I know from the women I have spoken to with PMDD, that to be associated with PMS is to almost disregard how bad PMDD episodes can be. If you tell someone you have Extreme PMS, then the main thing they hear is PMS and as we know, that is rarely taken seriously, so I do feel that a distinction should be made between PMS and it's extreme form. Many women relate to the dysphoric element of the description PMDD, and I feel it should have it's own name.. after all, it is currently described in the draft for the ICD 11 as 'a distinct clinical entity'.

Diet and the Menstrual Cycle was the topic presented by Ms Amanda Moore, Nutritionist, London. This was a fantastic talk highlighting the benefits of a healthy, low GI diet and it's positive effects on pre menstrual symptoms. You can devise nutrition plans depending on the symptoms presented. If you have more physical problems, foods to help support those bodily functions may help relieve symptoms, if it's more psychological, then foods can be prescribed to help with brain health and function. I think many women could do a lot more to help fight their PMS symptoms if they were more aware of what was good and bad to eat (although the bad is obvious in most cases!) The talk made me realise that I need to start getting more oily fish in my diet! Twice a week please! It also confirmed my thoughts that people in the UK can suffer greatly from a lack of vitamin D, which in turn reduces our serotonin levels. In some cases this can develop into Seasonal Affective Disorder, which can mean women with PMS/PMDD can suffer much more during the winter months in the UK.

The debate of the day was supposed to be between Professor John Studd (Professor of Gynaecology, London PMS and Menopause Centre) and Ms Claudine Domoney (Consultant O+G, Chelsea and Westminster Hospital). The topic – HRT can be taken forever. Unfortunately, Professor Studd was unable to attend, so we were all entertained by Claudine presenting both sides of the debate with an occasional comment from Nick Panay! It was very interesting and Claudine provided some much needed light relief after an intense morning of lectures. It was concluded that the newer bio-identical forms of HRT are safe for continuous use as they work in very small doses, and if an individual is happy with their medication there is no real reason to stop. What was also enlightening was hearing the frustrations of doctors who have had certain HRT medications discontinued.. often for no other reason than profitability to the drug company. It highlighted again that the doctors really do try to do their best, but are often restricted by the price of medications and are at the mercy of the drug companies that make and supply them.

After a brief break for lunch, we were back into the theatre for a discussion on contraception with Gilly Andrews, Clinical Nurse Specialist, London. It was amazing to hear about the advances in the contraceptive pill and the different types of pill coming onto the market. It was also explained that the reasons certain brands of pill are available abroad but not in the UK are because our own health authorities refuse to allow them to be prescribed over here. This is often down to the cost of the medications, or concerns over safety. If you are considering contraception and suffer from PMS, ask your GP or Family Planning Clinic for details of the newer contraceptive pills, such as Yasmin and Qlaira, and products such as the Nuvaring.

The afternoon talks moved away from the subject of PMS. Ms Claudine Domoney and Ms Annie Hawkins looked at sexual problems in women and how to diagnose correctly by taking into account other factors such as stress and background. Mr Tim Hillard, Consultant Obstetrician and Gynaecologist from Poole Hospital discussed pelvic floor disorders and the best way to help patients, including some really effective methods of treatment and Mr Michael Dooley, Consultant Gynaecologist and Medical Director from The Poundbury Clinic talked about fertility and the menopause, including what effects fertility and ways of dealing with infertility.

The day had been fascinating. It had been a pleasure to meet Nick Panay and the people behind the scenes at NAPS. Although I am no longer going down a medical or surgical route for managing my PMDD, I am very grateful for the work that all these specialists are doing. It had been said at the start of the day, that often, the first thing a patient does when they meet a specialist who understands their condition is shed some tears. I know that feeling well. I have met only a few medical professionals in my life who have taken me seriously, who have helped me and supported me. It was their understanding and belief that helped me to come to terms with what was going on, that it WAS real and there was an explanation. It enabled me to (eventually) become strong enough to do what I am doing now, which believe me, is not what I'd had in mind!

The next step for me is the launch of PMDD Awareness UK and an awareness month in April. The new website is almost ready and I am looking for women who would like to share their story/write about a certain aspect of PMDD. There will be ideas on the website of how you can help raise more awareness of PMS and PMDD, and ways that you can contribute to the website. Email me direct at pmddawareness@live.com if you would like to contribute to the website..

Thank you to NAPS and Mr Nick Panay for letting me peep through the window into the medical world, and for supporting my work so far. I hope that one day I might be able to stand at the front of the room and share my story, to give GP's and students a real life account of what PMS/PMDD really feels like, from my own personal story and from the stories I have read of hundreds of other PMDD sufferers over the years. If you ever get a spare slot, give me a call!

By Cat Hawkins

Mother, Artist, Writer, PMS Lay Champion, PMDD Blogger, Facebook Support Group Owner
Founder of PMDD Awareness UK – A grass-roots organisation with a mission to change the way the UK views menstrual health problems. Promoting a positive menstrual outlook.

(All personal views expressed are my own.  An edited version of my report can be found in the NAPS February bulletin  www.pms.org)
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