Interview with Tam Mason – author of ‘Olivia: My Saving Grace’

Hi Tam!  Thank you so much for speaking so openly about your PND experience.  You speak about it feeling very natural because you worked with children, what kind of emotional pressure did that put on you during pregnancy?

I put an enormous amount of pressure on myself, maybe not so much during pregnancy or at least without perhaps being aware of it but certainly after having Olivia. I was the first in the family to have a child and I was desperate to do it well. I had worked with children for so many years, studied child development to degree level, everything up until then had been about children. I was never really career minded and was always the one who was going to have lots of children around me; having a family was so important to me. I guess I set myself up for being the ‘perfect’ mother and thought I would be able to do it easily, without really considering the realities of parenthood and all the emotional issues that come about with it and anything less than that would feel like I was failing. I still beat myself up at times that I’m not that ‘perfect’ mother I strive to be particularly when things feel a bit tough being a parent but I’m good enough in Olivia’s eyes, I’m the one she wants and that’s all that I need to be and is all that matters.

Looking back at quite clearly suffering from an iron deficiency post birth how do you feel now about the staff who ‘looked after you’?

To be totally honest, my feelings towards them are not particularly favourable. I feel let down, resentful and sometimes quite angry that my care was not properly managed. I understand the enormous pressure that midwives and hospital staff are put under and the time I was in the hospital during labour and post birth was a very busy time but I’m not sure I’m able to forgive them, not just yet at least, for what happened to me whilst under their care. Rightly or wrongly, I believe it was the catalyst in my whole experience of post natal illness. My newborn time with Olivia and my life now may have been very different had my care been better and I had got the treatment that I needed. It was only years later that I found out that anaemia can be a risk factor to an individual developing PND and can interfere with breastfeeding, something that I really struggled with and at the time I also wasn’t aware of the seriousness of severe anaemia and the debilitating effect it can have on your body, physically and emotionally. Perhaps if I had of been aware of these factors, my husband or I could have been more influential in the care I received.

It’s fantastic to hear you had a good health visitor, what qualities did she have that you would like to see replicated in health visitors across the UK?

She understood, she had been there herself and knew how I felt. She didn’t judge and would listen to me openly, not only about the worries I had but also my parenting concerns regarding Olivia. She was always positive about me, gave me encouragement and boosted my self confidence. She visited me weekly in the beginning and very rarely had to change her appointment time so I knew I was always going to see her and I would find myself during the week saving up my thoughts to tell her. I just felt at ease with her and felt she wanted to help. I don’t think I could have got through that first year without her and will always appreciate the support she gave me.

It’s a wonderful moment to get the all famous ‘rush of love’ especially after PND. Do you remember what you were doing at the time?

I do and I think I will always remember it! We were in the kitchen and I was preparing Olivia’s tea. Olivia was sat in her highchair which she loved. The radio was on and she was at that stage of ‘wiggling’ to music. I had listened to the song ‘Halo’ by Beyonce lots whilst I was pregnant and I know it sounds corny but sometimes I could feel Olivia moving around inside me when it came on. I turned the volume up and turned around to see if Olivia would react and she had stopped still and was listening and then she really ‘danced’ with a great big smile on her face, babbling away. And that’s when I felt it, simply amazing!

I’m so pleased to hear that you’re open with friends, what do you say to someone who you suspect might be struggling?

I haven’t always been and at times I’ve regretted my decision in doing so but I think it helped me. I hope it may have helped others too and go some way to breaking down the stigma that surrounds post natal illness and mental health in general. I was very touched when recently a friend told me that she admired my honesty and my ability to be open. To someone who is struggling, personally I would simply say to them that they are not on their own; I understand and will listen when they are ready without judgement.

What does your role of Support Groups Team Manager involve?

Basically I ensure the effective running of the PANDAS support groups team. The team is made up of myself and 3 other lovely ladies. Together we look after 50+ support groups around the country.  We advise and support them in the successful running of their support groups, help them to get started and ensure they have the relevant checks and policies in place to run their groups as well as helping them with advertising and promotion via the website. We also pass on to them referral s from people interested in joining their groups. We have an active Facebook page for support group leaders to enable to them to liaise with other group leaders for discussion and support. I totally admire each and every one of our support group leaders, they give up their time to provide such a valuable service to so many who are suffering in their local communities.

I would love to run my own support group one day. There is very little in the way of peer support in my area and I’d like to be able to change that.

How would you answer the question, ‘will this darkness ever leave me?’

I’d honestly like to hope that one day it really does leave and goes for good. I’m not quite at that place myself yet but I am working well towards it. Some days are still pretty hard and I wonder how I will ever get through but they do get less and less and on the better days, the skies do clear and the days are much brighter than they were in the beginning. The bad days tend to now be triggered by something that has happened or that has been said rather than being just ‘dark’ for no reason. I try as much as I can to live in the moment, accept the feelings I have, be kind to myself and think that ok today is not a good day and it’s ok to feel like this but tomorrow will be better. I try not to look to far ahead, day by day works for me.

What is CBT and how does it help you?

CBT is cognitive behavioural therapy. It’s a talking therapy that helps you to manage problems by changing the way you think and feel. It doesn’t get rid of those problems but helps you to deal with them in a more positive way. Thoughts, feelings, physical sensations and actions are all connected and negative thoughts and feelings can trap you in a vicious cycle. CBT helps you to break down this cycle by giving you the tools to change these negative patterns and therefore improving the way you feel.

 I recently referred myself again for more CBT and counselling therapy earlier in the year. I am currently on my 12 week break and starting again in July. My therapist is amazing. It really helps me to challenge my thinking, and make sense of it. It has really helped me to understand and almost accept the reasoning behind the feelings I have. I really value having the chance to offload my feelings and thoughts to someone who is outside of my situation. It really does help to talk!

Finally ‘Halo’ is Olivia’s song, what is yours?

Kelly Clarkson – Stronger (What doesn’t kill you).

I reckon if I can get through post natal illness, I can get through anything and come out still fighting!! J

Olivia: My Saving Grace – by Tam Mason

My daughter has just had her 6^th birthday. Looking back, the last 6 years have been like a rollercoaster in every way imaginable. I can honestly say it has been the best and the worst time of my life. I have an amazingly beautiful, talented daughter but my battle with PND, PTSD and anxiety has robbed me of so much during this time.

I have considered writing my experience down on paper for a while now but never been able to do it and when PANDAS asked for people to write about their experiences, I felt now was the time to share. I hope what I have been through may help someone else to feel not so alone, to know that they will get through the tough times and to feel the confidence to go and seek support.

Ok so here goes…. I’d always desperately wanted to be a mum, it was all I ever wanted to do. I have always worked with children so it all felt very natural. When I fell pregnant my husband and I were delighted.  After the initial euphoria, I embarked on a tough pregnancy. I didn’t bloom as I was lead to believe would happen but was plagued with constant morning sickness, a bump that felt too heavy from 18 weeks, heartburn, early Braxton hicks, lack of energy, anaemia, and a dislocated kneecap at 37 weeks. Despite everything I was pretty relaxed when labour started. I had a long (48 hours) and traumatic labour but was proud of myself for getting to 9cm dilated on a shot of pethidine and gas and air. But my tiredness by this stage and dehydration meant that my body had started to give up and the contractions stopped. Hormone drip and epidural followed, 2.5 hours of pushing, Olivia’s shoulders almost got stuck and eventually with the help of a ventouse and several cuts she was born. I had done it, my longed for baby girl was here, I remember so well the moment they placed her on my tummy and I was crying with happiness and relief. We were now a real family.

The euphoria was not to last though. I suddenly felt exhausted, and weak. It was if someone had flicked a switched.  I handed my daughter over to my husband as I could no longer hold her, she felt too heavy.  I felt odd, detached and overwhelmed but just told myself I was tired. The labour ward was very busy at that time and an hour later I was finally stitched up and transferred to the post natal ward. I don’t think I slept at all that night. The next day, I had a rally of visitors and I put on a smile despite this odd feeling remaining. I felt so weak but I’d just had a baby hadn’t I, of course I felt tired, this was how all new mums felt wasn’t it? I had expressed my concern to one of the midwives, who agree I was just tired and brought me some food and told me to rest but really I just wanted to go home. I knew I would feel better then. My iron level had to be tested for anaemia first and came back as being half of what a normal level is supposed to be and showing severe anaemia but no one seemed concerned and as they weren’t then neither was I? Despite my doubts, I begged to go home, so they let me go that evening.

It was only weeks/months after that, through follow up meetings with midwives, I learnt, that in the hour I waited to be stitched up I had lost a massive amount of blood and I should have received a blood transfusion before I left. They were unsure how I was still physically standing with an iron reading that low! And this was to take its toll in the coming weeks and months ahead.

When I returned home that night, I couldn’t climb the stairs and had to be helped. I knew it wasn’t right but I got into bed and I honestly don’t remember anymore of that first night at home. The next weeks were quite honestly hell as nights turned into days and vice versa.

I couldn’t breastfeed due to my poor physical health and Olivia’s tongue tie but I tried so hard for those couple of weeks.  It was decided she should be moved onto formula milk because her skin was becoming dry and her lips were cracking indicating dehydration.

Visitors came and I cried every time someone went home, longing for them not to leave me feeling so awful and jealous that they could go back to their normal lives and mine had been turned upside down.

Everything had turned into a massive effort even the simplest of tasks, I could stand for only a few minutes before my legs felt wobbly, when washing in the shower I only could wash one part of me before getting too tired, I constantly felt like I was going to faint and my skin was deathly white. Over the coming months, my iron level crept up slowly and I felt stronger but by then I knew something really was wrong. I cried a lot, I felt low, anxious and in a constant state of panic. I didn’t like being left on my own for fear of what was going to happen to me and what would happen to my daughter and begged my husband not to go to work. I felt incapable of looking after her by myself and couldn’t bring myself to go out the house, I was too afraid. I couldn’t eat and couldn’t sleep. I was unable to sustain friendships and my marriage felt the strain. I felt alone and trapped in a life I didn’t want anymore. I re-lived Olivia’s birth over and over in my head and I didn’t want her anymore, I felt nothing and the sound of her cry was unbearable.

I remember the afternoon, 3 months later, when I broke down to my husband slumped at the bottom of the stairs and asked him to help me and he was straight on the phone to my Health Visitor. It was from then that I was diagnosed with PND, PTSD and anxiety and was referred to CBT/counselling.  I slowly began to feel better, more like myself and I coped and managed better and I put that down to the love and support of my family and my husband who kept me going through the harder times and who was always there. I had a lovely health visitor who visited me weekly for a year. My bond with Olivia got stronger and I can remember the day I first felt love for her when she was around 6 months, it was amazing! I was listening to Beyonce’s Halo song and it has remained ‘Olivia’s song’ ever since.

The next couple of years were very up and down and passed by in a bit of a blur but I eventually started to enjoy my new life as a mum. Unfortunately, I was suffering too much still to be able to return to the job that I loved when my maternity leave ended so I decided to become a ‘stay at home’ mum (probably one of the only things I thank this illness for, being able to see Olivia grow up completely has been an opportunity I wouldn’t otherwise had had!).  I started to get out more despite it still being very difficult, I met more ‘mum’ friends’ in my village and life got easier. When I felt brave enough to mention to people that I was suffering with PND, I was shocked at how many others did too or had done before. It was as if when I started talking about it, it gave others the opportunity to open up as well. As much as I hate the thought of others suffering in the way I have done, it felt like a comfort, I wasn’t on my own anymore. Then, I discovered PANDAS when Olivia was 4 and again found there were lots of other ladies out there, just like me who felt the same and had had similar experiences. I now volunteer for PANDAS, I manage the support groups team, a position I am very proud of and I won an award at this year’s PANDAS conference and awards for my volunteering, something which has given me a real boost of self confidence. I have met some wonderful, inspirational people through PANDAS, lots of who I am pleased to be able to call my friends and it has in some way turned my experience into something positive. I have a lot to thank PANDAS for.

I would be lying if I said that I didn’t still struggle, the anxiety still plagues me even now and often days feel really dark but I think I know how to manage it. I still have regular counselling and CBT sessions and I feel these are really beneficial. I try not to let how I feel get the better of me too much but I now accept the things I can and can’t do and recognise the days I just need to give myself a break and not put the pressure on myself. On the not so good days, I have my PANDAS family to turn to for support and I am very thankful for that. Unfortunately, Olivia will remain an only child. I won’t be having another baby and this is probably the hardest part of my experience of post natal illness to come to terms with, but time will be a healer I’m sure. I can’t put myself through anymore and my husband and daughter have had their fair share. It’s had a big impact on us all. I’m ashamed to say, I struggle to be around women who are pregnant, and those with tiny babies still but I’m working on this and hopefully one day I’ll feel comfortable with the situation I have found myself in. Right now though I feel that this illness has robbed me of the chance to have the family I had always dreamed of and I can’t forgive it for that, but at the same time I am very, very lucky. I have Olivia, who I love so very much and we are so incredibly close now, I couldn’t be without her.  She is growing into caring, kind and clever girl who makes me so very proud. I hope she doesn’t remember much of her ‘unhappy’ mummy when she was younger but if she does I hope she will understand when I explain it to her when she is older, that this was just part of Mummy’s illness and she will be proud of me for fighting through and for always putting her first and doing my best. Post natal illness may have taken her early years from me, I can’t remember much of them but I won’t let it deny me of the amazing future that we have together!

In the Beginning There Was ‘Mum’ by Honest Mumma

(as previously published by Honest Mumma)

So here goes, deep breath, and…… blog away!!

First things first.  I’m Mrs M, Mum to two gorgeous children. Missy B (aged 2) and Mr A (aged 10 months)

I’d like to start by explaining my reasons for starting my own personal blog. Mr A was born prematurely due to a placenta abruption, caused by me having complete placenta praevia during pregnancy. As soon as Mr A was born he was taken to the neonatal intensive care unit where his breathing was supported and stabilised. He also suffered a pneumothorax at 2 days old which set him back. Being told my doctors a few days later that ‘If I hadn’t of been in hospital when the placenta abruption occurred there was a strong chance both myself and Mr A would not of survived due to such massive blood loss.’ Was quite a reality check and the enormity of what we had been through started to dawn on me.  After a 13 day stay, where he was fantastically cared for we were lucky enough to bring out gorgeous little man home.

Missy B’s birth, 16 months earlier, was also classed as ‘traumatic’ by medical staff. (Long story short, waters break Tues am, Induced Thurs am, Missy B eventually born by emergency c-section Fri am after 2&1/2  hours of pushing, back to back baby, trying to be turned, hormone drip, spinal, forceps, section) phew!!

The result of Missy B’s birth and Mr A’s sudden traumatic arrival into this world has  resulted in me suffering from post natal depression. Self-diagnosed when Mr A was about 4 weeks old and confirmed by my doctor a few weeks later.

After trying a variety of antidepressants, talking therapies and acupuncture, I am now on some meds which really suit me. My head is less fuzzy and my thoughts are a lot clearer. Then I arrived at the decision to start a blog to share my thoughts, feelings and the ups and downs of my recovery.

Ever since the first day of my diagnosis I feel I have been ‘recovering’ in some ways, even if it is the teeniest tiniest baby steps they’re all in the right direction.

I also hope my blog will be able to make others in a similar situation feel that they are not alone, whether it is them with pnd, a family member or close friend going through it. You are not alone.

Post Natal Depression is such a taboo subject.  It seems to be hidden away from society and something to be ashamed of. When a lot of people suffering from this illness need as much help and support as possible around them, they struggle on quietly by themselves.

Through my blog I would like to change the perception of this debilitating illness and breakdown social stereotypes surrounding it. Nowadays there is so much pressure to be the ‘perfect mother’. Be well  groomed, have a tidy house, provide home cooked meals, partake in numerous stimulating activities with the children, maintain a career, be prepared for every eventuality, drop the baby weight etc etc. Something I feel is very hard to achieve and maintain. I also feel social media is partly to blame for all of these pressures on new Mums. It’s all too easy to’ log on’ anytime, anywhere and see how every other Mum seems to have all their shit together.

I’m the first to put my hands up and say I am definitely guilty of the above and frequently share photos of myself out and about with Missy B and Mr A having a great time at the park, beach, visiting friends and dare I say partaking in numerous stimulating activities!?!  Because let’s be honest no one wants to see a photo of me un showered for three days, hair not brushed, four day old sick stained jogging bottoms on with who knows what that brown stain is on my fore arm!!!

So if you’re reading my blog expecting intellectual, witty in depth conversations about politics, the economy or current affairs you will be sorely disappointed. What I can promise you though is a brutally honest account of my days and nights (good, bad and ugly.) Sleep deprived, poorly spelt rants and ramblings with occasional appalling grammar and foul language. Through this blog I hope to be able to help, support, guide and inspire others as well as keep motivating myself along the bumpy, twisty, journey that I call ‘Recovery’.

To read more, please visit Honest Mumma’s Blog…

Why I Went – by Amy Dear

On Saturday, I went to the PANDAS annual conference. I’ve been volunteering for PANDAS since February (ish) and it’s been a bit of a rollercoaster for me, if I’m honest. Here’s what happened.

In my old life (pre kids) I used to love a good conference. Training? Yes please. Meeting new people? Hell yes! Let me take notes, let me nerd out, let me be the first person with my hand up for questions. I loved it, I loved being involved. I loved overachieving.

Then babies, and anxiety, and post natal PTSD. Being ignored by people, losing friends and confidence and self worth. Massive weight gain, health problems from the birth and then to top it all off, a Pulmonary Embolism. Arguments and heartache and a lot of being ignored.

It’s easy to give up. I almost did. And then suddenly my eldest son was nearly 2, my youngest was nearly 1, and I felt so much better. I wanted to do something – really do something, not change shitty nappies or give out bottles or, you know, raise a human being. I wanted to prove I was still capable of grown up things.

So, I signed up to volunteer for PANDAS. And after a convoluted and confusing period of ‘let me help!’-ing at anyone who would listen, I wound up volunteering on the Support Group Admin, the Twitter page, the Online Community, and helping with the Helpline admin. So a little bit more than I had expected!

When the PANDAS conference came up I had a million different reasons not to go. It’s pointless, I thought. No one wants me to go, no one is bothered if I turn up. It won’t make a difference, I won’t be missed. I love the people I work with, but I always imagined myself to be the sad one – hanging on the outskirts of the group, hoping to belong. What a sad image I have of myself! But that’s how I view things. As someone who has been Mean Girls-ed out of a large number of groups, I thought there wasn’t a place for me.
I’ve signed up for a 10k in July, for PANDAS (of course). Feel free to donate HERE! On one of our Facebook pages, I casually mentioned that I was having trouble getting donations as I don’t have a large circle of friends to call on (I think I put it as ‘I have no friends’, which is far more honest but slightly more blunt!).
Within minutes, Rachael (co-founder of PANDAS) had shared it on her wall, calling me a friend. Donations swiftly followed. I sat, had a little cry, felt a little silly – and decided to go to the conference.

I didn’t walk in very smoothly. I didn’t do anything smoothly! Arriving early, spending 10 minutes outside trying not to have a panic attack. I got lost. I forgot to introduce myself to Suzi, who was handing out ID badges. I almost walked into Rachael. I ate my salad with my hands (sandwiches and salad was too confusing for my poor, addled brain). I babbled nervously about my stupid accent. I gushed over Olivia Seigl (off The Baby Bible, which is awesome, and I’m actually very proud of the selfie I got with her). I wrote illegible notes and cried quite a bit. I jabbered on about my post natal PTSD, my PE, and even my difficulty finding a house. I smiled too much and tried too hard. I shamefully disclosed my enormous notebook of PANDAS stuff, and ate an embarrassing amount of free cookies. I tried to thank Rachael and probably sounded like a maniac. I tried to tell everyone how awesome they were, repeatedly, and probably came across like a serial killer.

LBut I loved it. It was me at my awkward, uncomfortable best. I felt weird, I felt odd, and I felt welcomed. I didn’t feel mocked, I didn’t feel left out, I didn’t feel like I should go home. The day started with me sweaty and terrified and wishing that I could take it all back. By the end, sat with so many amazing, inspiring, wonderful women, I felt like I could be like them someday.

I’m Amy. I’m 25, I’m a Mum of two. I’m a very strange person, I don’t usually fit in, and I’m a volunteer for PANDAS. And I love it.

My Husband Has Postnatal Depression – Steve and Ele

(originally published by Poynton PANDAS)

Steve

I had no idea why I was feeling like I was feeling.  Our daughter was very happy and healthy and my wife embraced her new role as a mother.  I attributed my feelings to a lack of sleep and dealing with the momentous change that happened when our daughter was born.  I had read articles that “love” between a father and his child can take some time to develop so I wasn’t too worried.

I’ve never really felt comfortable around kids.  Growing up my brothers would interact with the baby cousins and I just could never find myself “googooing” and “gagaing” and doing that kind of stuff.  However, I figured when my own child was born I would have no choice and it would come naturally to me.  Anyway, after my daughter was born I did what I could in terms of looking after her so I jumped in with the baths and changing and feeding occasionally.  My wife breastfed so I would do an occasional bottle feed to give my wife a break.

After a few months of doing the dad thing, I found myself not feeling right.  I was very irritable and generally being a bit of an asshole. Evidence of this is in the swear jar that had something like 200 pounds in it after 3 months (1 pound a swear in front of my daughter).  I remember grudgingly doing things that my daughter needed.  I hated feeding her, dressing her, hearing her cry, everything.  It was bad but I attributed it to lack of sleep or something.  After all, I wasn’t aware that paternal postnatal depression was a thing.  As part of my embracing of my new role as a dad, I started following various social media sites to read articles about fatherhood/parenthood and maybe laugh at some of the unfortunate incidents around diaper changes!  Anyway, one of the sites I followed posted a clickbait article that was titled something along the lines of “we need to talk about a condition affecting dads.”  You’ve seen the type of headline so I figured it’d be something about exercise or getting enough sleep.  It was actually about some of the symptoms of paternal postnatal depression and it was like reading a diary of my recent life.  It was very eye opening and it prompted me to do some further research.  Being me, I like to be sure about things before going further with any formal treatment.  While I had my various browser windows open, my wife saw what I was looking at and we talked about what I was looking at.  To be honest, I would have rather it was various “specialist” websites that she caught me looking at instead of one pertaining to mental health.  I felt slightly better after talking about it so I put off my trip to the GP for a while.

After a few weeks from my “self discovery” things hadn’t gotten better so I went to the GP where I was prescribed a course of Citalopram, an antidepressant.  The potential side effects and what not scared the b’jesus out of me so I was hesitant but ultimately decided to go ahead.  I’m so glad I did.  The effects weren’t immediate but after several weeks I was starting to feel like my old self again.  At the height of my depression I would have shuddered at the thought of spending any extended length of time with my daughter but since starting treatment, we’ve had several father/daughter days out.  We recently had a family trip back to the U.S. and I even contemplated just a father/daughter trip there!

I’m very optimistic about the future and I think I’ve kicked this thing.  My antidepressant course is due to end shortly so we’ll see in few months whether I’m in the clear.

Ele

My husband has post-natal depression.  It’s easy to say it out loud and talk about it now but when he first told me five months ago that he thought he may need some help, it’s fair to say I was at a complete loss as to what to do or say.

Our beautiful baby girl, Alice, is now nine months old.  My pregnancy was as straightforward as they come, the birth was textbook and so far, touch wood, we’ve not had any problems that every new parent doesn’t experience at some stage.  In short, there were no red flags that one of us may be at risk of post-natal depression. That’s one of the reasons it came as such a shock to me when Steve said he was struggling.  Yes, he had not been himself for a couple of months.  He had been more distant; wasn’t engaging with Alice; he had a shorter fuse with pretty much everyone and everything; and all-in-all he had not been very fun to live with.  The idea that he had post-natal depression though was a real shock to me.

For a start, I had no idea men could have post-natal depression.  It’s no surprise really, given the enormous impact having a baby has on life, but I’ll admit it had never occurred to me.  I wanted to do anything and everything I could to support and help Steve, and I told him so, but had no idea how to do that.  If I am honest though my very first reaction, at least privately, was fear.  What did this mean for us?  Would we would end up separating?  What if he never bonded with Alice?  She was turning into an amazing little person and I was terrified he was missing it.  I have past experience of living with people with depression but this only made me more fearful now.  I know what a long-road it can be and how difficult it is.  I was scared and although rationally I was sure we would be fine, I couldn’t help but think of worst case scenarios.

A lovely lady from Poynton PANDAS had attended our local postnatal class.  I’d not given it a second thought until now but wasn’t sure whether they could or would help me, so I got in touch online.  Their response was immediate and so reassuring.  I went along to their next group, not sure what to expect, and I am so glad that I did.  Just talking to other people who had experienced similar problems helped.  I knew instantly it was a safe place to voice all of the worries I had, even the ones I knew were a little on the ridiculous side, and to answer the many many questions I had.  I left that day with a much better idea of what Steve was going through and how I could support him.

Steve went to talk to our GP, who was really supportive, and he’s now on a course of anti-depressants. It would be wrong to say that things are perfect, but they are much better now that we’ve both found help and support.  Post-natal depression is no longer something that hangs over us like a black cloud and I no longer worry it will define Alice’s early life.

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If you need support with maternal or paternal ante- or post-natal illness contact Poynton PANDAS at psppoynton@aol.co.uk or via facebook www.facebook.com/PoyntonPANDAS

To find a support group near you check out PANDAS Support Group page http://www.pandasfoundation.org.uk/how-we-can-help/support-groups.html#.VUjmiJMYFQI

Interview with My PANDAS Volunteer BFFF* Donna Swift

(*Brilliant Fabulous Funny Friend)

Hey you.  Thanks for joining us over here on the PANDAS Guest Blog today!  I know that #volunteersweek is sooo over, but I wanted to ask you a few questions, post-conference, about why you volunteer with PANDAS.  So…

What made you first want to get involved with the PANDAS Foundation?

I volunteer for PANDAS because I suffered acute pre and post natal anxiety and depression. I want to help ladies (and gents) through what was the most challenging and desperate time of my life. I want to tell them there isn’t a feeling they are having that I haven’t felt myself and try my very best to support them until they get the help they deserve and start to see that light at the end of the tunnel. (Blub) Also I want to make sure they know they are not alone and it’s ok not to be ok.

What do you do?  What is your official PANDAS Job Title?

Job title hahaha …. I have many but my official title is online coordinator….. Oh and stuarts PA !

You won an award on Saturday, the PANDAS Champion Online Community Winner, how did that feel?

My award ! I’m thrilled . It’s fantastic to be recognised for the work I do. I am just so so proud.

Can you tell us a little more about the PANDAS Online Community?

We have a new online community which is going to be launched very soon. Its going to be a place where our service users can support each other and chat, Ask questions and seek help. We have a number of volunteers monitoring the community and making sure we also offer help and support.  We will make sure everyone is aware of the launch date as its very exciting. I cant wait to get started.

At the Conference, we talked a bit about the stigma of PND, did/do you ever feel stigmatised for suffering from postnatal mental illness?

At first I was so ill I didn’t think about what people thought. I just needed to feel normal. Once I started to feel a little better I would say. Yes I felt stigmatised. By some of my own family. I was so frightened to speak out. I have since learnt that getting well is priority and speaking out is a massive step in recovery. Talk talk and talk some more!

Tell me one thing you learnt at the PANDAS Conference…

I thought the PANDAS conference was amazing. I learnt so much but I would say what stood out for me was a talk on self harm. I also learned that I volunteer for and with some AMAZING people who work together everyday to help PANDAS to be as amazing as it is and we all help any way we can.

Finally, are the rumours true?  Did you get a Yorkshire Tea tattoo after the Conference??

The Yorkshire Tea tattoo unfortunately just a rumour but never say never…

Thank you Donna!  Now, get back to work…..

Back to work. I’m on it. Two days away and I have so much to do. BUT….l love it and wouldn’t have it any other way

Donna ‘queen of the North’ xxxx

Eat The Caramels and Ditching the Coffee Creams – by Rachael Jones

For those who don’t know I’m Rachael, I’m 26 mum of two gorgeous children, Cofounder and CEO of PANDAS. I’m emotional, I cry a lot… so I will apologise in advance in case I cry… and for anyone who knows me, knows that I do not ever do things by halves.

Today, I want to make things simple and match life to chocolate… where you can choose to eat the good one, the caramels and ditch the rest, the coffee creams.
The greatest gift any one can ever give you, is to believe in you. Just believe you are here for a reason. Don’t give up on everything you dreamt you could be as a child because of who or what you have surrounded yourself with.
Your brain is circuit switch, once you believe you are something, you actually embody it, and you embrace that feeling. If God forbid you were in a coma, and you woke up and you didn’t really have a memory and you were told you used to be a marine and they want you back as soon as you are fit. Do you think you would act differently, hold yourself differently, conduct yourself differently and have a different self-concept of who you are than if you told you were a piano instructor? Would you stand taller, straighter and talk with more confidence?
Being successful in life is all about having the proper belief system in who you are, truly believing that you are something unique, that you are something special. If you truly believe that you are one of the best TV Presenters in the world, you will be entirely different than if you went around thinking I hope I am good. Your expressions will be totally different, your tone of voice, you’ll talk in a more convincing fashion, you’ll use your natural voice instead of a scripted one.
Our brains are like a circuit, if we program it with the correct wiring, we’re going to go straight to our target. Bring unsure about who you are, means your dreams, your goals, they will never become a reality.
Everyone has mental doubts in life, internal conflicts. Even the most successful people you look up too do, but they don’t live there, they don’t stay in that moment. Moving forward is about how you handle those negatives thoughts in that exact moment and overwhelm them with positive action and that comes from having the up most confidence in yourself that you can handle the situation and you need to trust in yourself that you can handle the moment because you can!
There will always be haters, there will always be people who want to break you and tear you down, and how do you stay strong? Someone’s opinion of you does not need to become your reality. Don’t allow anyone to steal your success.

I asked for people to comment on Facebook for the last negative thought that they have had about themselves, the response within one hour was over 50 comments and personal messages…50! Yet as individuals we do not go and speak so viciously towards others, yet we allow us to do it to ourselves on a daily basis. My destructive thought is ‘I AM USELESS AND WORTHLESS”. Whenever things get tough that’s the thought I have. This thought doesn’t help in any way, just tears at any self-confidence I have. I know that it is just destructive!
I have to admit it is only recently I have found inner strength, it took a lot of soul searching over this last year, a lot of change and a trek across the Sahara to realise the only person who can make life happen for me… is me. I made changes, I decided to take that control back which I had lost to live life how I want too.
Some people sit here, knowing full well how close they came to ending their life. I understand that, I’ve been there. To feel so low that everyone you have surrounded yourself with is better off without you and just wanting that constant deep suffocating pain to leave your body and mind. They hardest battle you have faced, you have succeeded, you are alive! You are here!
I am not saying any of this is easy, there will be days when you hate yourself and you look around and wonder how everyone else has life so easy. Just remember not to live in the moment, change you mind-set, the negativity, and start applying positive actions.
If you want to lose weight, buy trainers and run, if you want to trek the Sahara do it, if you want to change your career path, work towards it, if you want more education, then enrol to college of university.
Life is about eating the caramels and ditching the coffee creams. We are the masters of our own destiny.
To end let me remind you…There will always be haters, there will always be people who want to break you and tear you down, and how do you stay strong? Someone’s opinion of you does not need to become your reality. Don’t allow anyone to steal your success.
Remember yesterday is the past, we cannot change that. Tomorrow is a gift, but today is an opportunity.
If you want what you have never had before, if you want to do what you have never done before, if you want to be what you’ve never been before. Change your mentality. Be excited of the fact you have an opportunity of a life time.
The greatest gift any one can ever give you, is to believe in you. So here is my gift to you. I BELIEVE IN YOU

I am a PANDAS Volunteer – by Catherine Pollard

Well, hello there!  If you are a regular reader of this blog, you may know me already as the young lady who badgers folk to share their stories, their experiences and their knowledge with you all here at the PANDAS Guest Blog.  I thought it would be natural to write about the PANDAS Conference on the following Monday, but here I am on Sunday evening without a post ready for tomorrow – eek…..

Most of you have probably already seen the photographs littering Facebook of speakers, people laughing (very loudly) and award winners, it was a great day and really well put together.  I watched Sally Llewellyn (PANDAS Safeguarding Team) give two talks, one on Self Harm and Intrusive Thoughts and the other on Challenging Misconceptions, both were exceptional and we all took away a lot of invaluable information.  I also watched a talk on Talking Therapies, which was so interesting that it over-ran into lunch and nobody complained!

Rachael, our beloved PANDAS Founder, gave a very moving talk which really challenged the way we speak to ourselves, it was horrifying to hear some of the quotes, particularly to hear mine (“I’m too selfish to be a good Mother”) among them.  It was a real eye-opener.

Then came the most shocking part of all.  I won a blooming prize.  I went and won PANDAS Volunteer of the Year!  

Stuart Dobson, Silly Cry Face and Rachael Jones

I was totally overwhelmed, I’m one of those people who never win anything.  Or the type of person who kind of thinks they’re doing a good job until they see someone else doing it better so they give up.  I was honoured, and a bit embarrassed that the photographer was taking a photo of my Silly Cry Face, but mostly just flat out amazed that I’d actually won something.  (Read back to Rachael’s speech on how we talk to ourselves, ahem…)  So, I thought that this week, I’d give you a little glimpse into my PANDAS Volunteering World so you can see what goes on behind the scenes 😀

My day usually begins with a hilarious message from our Online Co-Ordinator, Donna Swift.  She’ll have probably been up since about 4.30am with her beautiful little girl so it kicks me straight into PANDAS gear.  Still in bed, with maybe only one eye open, I’ll scan through my Google Alerts to see if there are any news stories relating to perinatal mental health, or PND, in my inbox.  If there are, they’ll be posted up on the main facebook pages.  I like that we stay up to date with everything going on out there and get very irritated if we miss something, so if you ever see something that we haven’t, get in touch!

Donna “Queen of the North” Swift and myself

I’ll slope downstairs with my daughter, Violet, for an argument about cereal, or the telly, or toilet roll and when all is pacified, I’ll fire up the laptop ready to get my PANDAS hat on.  I run the Facebook show on a Monday so along with relevant news articles I’ll have a look for other blog posts (my favourite blogger is brummymummy, hilarious…), things going on nationally such as Volunteers Week and Mental Health Awareness Week etc etc, and anything else that I think you’d like to see up on the page.  I’m also on the admin team for PANDAS Closed Group so will make sure to keep up to date with approving posts and making sure you all know that we’re here for you.

The PANDAS Guest Blog will usually go up at about 9-10am.  I always get really excited to hear the response the articles get as I’m always on the lookout for new writers and try to make sure we’re always bringing you the very best.  I like to post the interview a little while later so that the article itself has settled down.

While this is going on, I’ll be flitting about across the PANDAS Facebook Groups doing little jobs for others like uploading pictures, scheduling interviews, designing certificates, all sorts really.  I LOVE getting creative so really like designing things and love doing the videos for the PANDAS TV YouTube channel but also enjoy getting my geek on and working out how to solve problems with computer-y type jobs.  I’m also working on a PANDAS Task Force to hopefully get some changes made within Primary Care settings to ensure we’re all getting the care we deserve.

If I get a minute, I’ll do some reading.  I hunt down journals, articles, books, anything I can get my hands on.  I’ve recently bought “Sad Dad – An Exploration of Postnatal Depression in Fathers” by Olivia Spencer.  I’m really passionate at raising awareness of male PND, Dads deserve support as much as us Mums and I suspect that PND in men is reaching a similar frequency level as with women.  I get quite excited if I find a television or radio programme that flags up mental health issues, so will spend half an hour or so watching/listening to see if it’s relevant to us here at PANDAS.

My daughter by this point will probably be going a little crazy and will have started climbing up my back shouting “PIGGY HEAD! PIGGY HEAD!” so I’ll take a break to do some play fighting or dancing and start thinking about lunch.  If we head out into town, I’ll have my phone close to hand in case there’s somebody who needs to talk, or needs me to do anything.  If it’s quiet in the afternoon, I’ll do some emailing/harassing 🙂  I’m setting up a PANDAS Support Group in Rugby at the moment so am emailing local parent groups and mental health campaigners, a whole range of different people, to try and get some publicity and also to seek out people with common interests and goals.

I’m also studying a Mental Health course, so if things are really, really quiet, and Violet is asleep, I’ll crack on and get ahead on that.  But to be honest, that really doesn’t happen very often.

In the evenings, with Homeland on in the background, I’ll sit and write up blog posts or interviews, or may even have some telephone interviews with prospective PANDAS volunteers.  There’ll probably be another hilarious message from Donna, and then it’s time to hit the hay.  I try to get to bed before midnight but since we’ve started watching Homeland, this has proved difficult.

Volunteering for PANDAS has given me a whole new lease of life.  I wake up excited to start my day.  If I’m struggling with relapse or just having an off-day, I take a day or two offline, just nipping in to help with admin bits and bobs.  I find the other volunteers are a huge support and don’t really know what I’d do without them now.  And I won’t stop.  I won’t stop until everyone has adequate, appropriate and excellent pre and postnatal mental health care and if this involves the bags under my eyes being a little larger than the other Mums in the playground, so be it!  I’m a PANDAS volunteer and I love it 🙂

Violet and I after the PANDAS Conference ❤

#itsoknottobeok

Lanarkshire PANDAS Support Group

Back in 2011 I fell pregnant. It was a wonderful feeling. I couldn’t be happier. It was everything I had always wanted and was so excited to tell everyone that I was going to have a baby before the year was out! The pregnancy was great too; only slight morning sickness with everything else going to plan. Then, at 29 weeks and 1 day, I asked my husband if he could remember me making any comments about the baby moving. I tried not to panic. I rested and make a conscience thought to feel for movements. A kick, a tickle, a cough. An hour later and still nothing.

So we went for a walk. Had some fresh orange juice. Then ended up at my mother-in-laws. Another few hours and panic started to set in. I called the hospital and went in. Straight on to the foetal monitor. The happy little thump thump thump sound made us all physically relax. But it wasn’t enough for the hospital. They wanted a scan. The scan confirmed their fears. There was no blood flowing in the cord. My baby was dying and killing me at the same time.

From this moment on, I’m fuzzy. All I can really remember is that I was hit in the leg with steroids and told that an ambulance would be coming to take me to another hospital as there weren’t the facilities for us there. We got the full blues and twos treatment down the m6 only to be told that they were sorry, but there simply isn’t the time for an epidural to set in and I needed a general.

I wake up violently to discover I had had a boy and he was in the NICU. He was 2lb 2oz and so fragile. It would be another 12 hours until I could see him. Then a week until I could hold him. And then another 8 weeks on top of that before we could take him home.

The whole time of being in hospital, I was alone. With only brief chats to other NICU parents. When we got home, my husband had to go back to work and then we were alone. I was isolated. I had no mummy friends. And even when I did try to be brave and go to any baby groups, no one understood how awful I was feeling. This was not the baby blues. This was much worse. From some serious counselling, I found out that I had not only Postnatal Depression, but Post Traumatic Stress Disorder.

Things carried on in a chaotic fashion of appointments and weigh ins for a few months. When my gorgeous preemie turned 7 months, I then found out I was pregnant again. Oops! Big, BIG oops!

I couldn’t cope at all and broke down. I needed to be near my mum and dad and moved our little family from Staffordshire to Lanarkshire when I was half way through my pregnancy. But even so, we were alone again. No one could understand what we had been and where going through.

I suffered awfully through my second pregnancy. I made it past the 29 week mark and kept being told that I was just nervous. That pre-natal depression isn’t very common and not to worry about a thing. I developed cholestasis in my second pregnancy and was in and out of the hospital every 2 days for tests and heart traces. I didn’t want this baby. I didn’t like what it had done to our family. It split us up and moved us from our friends.

My youngest was born by planned caesarean (that was moved forward to 37 weeks due to my health!) and when we got home, I couldn’t stop crying. My husband was working 2 hour days far away and I had a 13 month old who couldn’t get around for himself and a newborn that wouldn’t sleep or feed and all I could do all day was cry.

So many times I wanted to get up and leave. Just drop my children off at my parents’ house and walk until I could find a place to hide. Forever.

In my desperation, I did what any ‘sane’ person would do….I turned to good old Google! “Post Natal Depression Glasgow” I searched for. Lo and behold, PANDAS Foundation popped up at the top of my results and I sent off an enquiry about a peer support group. It was months and months until the group was set up and running, but I went along and couldn’t believe how amazing it was. Here I was, in a room of other mums who were telling their stories of spilled milk causing tantrums (from mum and baby!) and of all the small and menial things that wouldn’t be an issue for ‘normal’ mums.

I was brave and told my story and couldn’t believe that here was a group of people nodding their head and understanding these irrational thoughts that were in my head!

I loved my support group. And continued to go along until my husband got a new job which meant I could no longer attend. I was heart-broken when I found out that I could no longer go along to my ‘Therapy Thursday’ but thought to myself, I am in such a better place now thanks to these wonderful, inspiring ladies. Maybe I could start my own group local to me?

So I did.

And in June 2014 I held my first meeting of the Lanarkshire PANDAS Support Group. 2 lovely ladies came in to my home, drank my irn-bru and we laughed at our common problems.

At the time, one of the ladies, Vicky, was pregnant with her second girl. She had terrible pre-natal depression. Had been diagnosed with borderline personality disorder and had a CPN that couldn’t understand why she wasn’t happy to be pregnant. Vicky came along each fortnight to our meetings and agreed how great it was to be around like minded people who understood all of the little feelings and emotions that meant nothing to others. After a very difficult first birth, Vicky elected to have another caesarean. This was a decision she was worried about, as had always wanted to have the ‘perfect birth experience’. Through coming to group and talking about her fears and worries and listening to the other girls talk about their experiences, Vicky went in to the operating theatre no longer petrified. She knew she had a community alongside her.

Through new babies, holidays and jobs, our group went quiet for a few months, but picked up again towards the end of the year. With me running the group from my living-room, I started to worry about where I was going to put everyone, as word was spreading about the group and referrals came in from the PANDAS website.

In February of this year, I had 15 mums ‘on my books’ but I finally got the news I had been waiting on. I had been offered a full time job within the Civil Service. I could no longer dedicate all of my time to my group. Nor could I have meetings in the house of an evening if I was working until 8 at night.

Through all of this, myself and Vicky became amazing friends and would chat almost every day via mummy messenger! She was in a much better place now. And she asked if she could help with the group. Her offer couldn’t have come at a better time.

Now, 4 months down the line, Vicky has managed to secure a venue every second week at our local Sainsbury’s café. She also has a presentation later this month to the staff at the store, as we have been longlisted to become Sainsbury’s local charity of the year. We are also trying to organise a ladies Pamper Party to collaborate with PANDAS 4^th birthday in August.

Having a safe place to meet every now and then, with like-minded people who just get you, has been vital in my recovery. To sit in a room, and listen to others telling you about their day and realise that they have been thinking the same thing as you, is amazing.

PANDAS has saved my life.

PANDAS has brought together mums who have been alone for too long.

PANDAS have shown me…

#ItsOKnottobeOK

 

www.facebook.com/lanarkshirepandas

Meetings every 1^st and 3^rd Wednesday of the month at Sainsbury’s café, Kingsgate Retail Park, East Kilbride.