The Baby Bump and The Bad Lump

Because you have to take the rough with the smooth…

So I guess I left you all on a bit of a cliffhanger after my first blog…Apologies for the delay in following up, it’s been half term and I’ve been rushed off my feet with the boys (L is almost 8, H is 4 – they love and irritate each other in equal measure). Now where was I?…

Significant Trauma 2:

In 2014 life was pretty damn good. L was about to turn 3 and being a June baby we’d organized a big outdoor party in the local park. My husband N and I had been trying for another baby for a few months and we were so excited at the prospect of giving L a sibling. Our flat was on the market and we’d just accepted an offer over the asking price, affording us a deposit on a family home with a garden in Worthing.

This is my favorite photo of L and I at his 3rd birthday party. I usually hate my photo being taken but this picture captures a moment in time when I was truly happy and in a good place mentally. In fact I think this was probably the happiest and most secure we’d felt as a family unit.

Two weeks later, everything changed. I’d been taking pregnancy tests daily (sometimes twice a day – OCD is an expensive habit) and we’d just found out I was pregnant again. That faint line on the test window meant the world to me and I was already thinking about baby names and imagining how L would take to being a big brother. Of course there was the small issue of a breast lump that I was having investigated, but I felt pretty invincible.

The Bad Lump

I’d had biopsy’s earlier in the month but this wasn’t the first time I’d had a breast lump and as a non smoking vegetarian with no history of cancer in my family, I’d barely given it a second thought. So when N & I arrived at the hospital laughing and joking to get my results, we never anticipated bad news. We were too busy planning our future with L and our new baby. That was until we got taken into the bad news room. Think armchairs, lily’s in a vase and a box of strategically placed tissues. Before the consultant opened his mouth, I knew. I was diagnosed with stage 3 breast cancer. They told me it was fast growing and there were signs of lymph node involvement. They wanted me to terminate the pregnancy and commence chemotherapy right away. It’s surreal because I don’t remember my husband’s reaction at all. I guess he was doing his quiet, shades of grey thing and holding everything in; heaven knows what must have been going through his head. All I remember is the way my heartbroken wails filled the room as I sobbed ‘what about my baby?’ A mastectomy and lymph node clearance was planned for in four days time (the blessing of having private healthcare through my husband’s work) and I was sent home to reconsider a termination.

On reflection I really have a lot to thank my Autism for in terms of how I got through the next 12 months. You see one of our super powers is the ability to hyper focus. So I decided to direct all my focus on our growing baby and to switch off the fear and panic I felt about the cancer invading my body.

A Story about Boobies

It seems only fitting as I’m about to describe having my breast cut off that I reflect on my relationship with my breasts.

I was a painfully shy and awkward teenager, very naive and self conscious. I hadn’t been prepared for puberty. Let’s face it puberty is tough whoever you are but for an undiagnosed Autistic young woman it was pretty harrowing. Periods made me feel dirty and smelly. Bras felt like torture devices. My brothers teased me mercilessly and I hated my changing body. However as I got older my breasts grew and grew! They were ginormous on my small frame but I started to notice that boys liked this and that other girls would dress to emphasize their cleavage. Even at 44 years old I still don’t know how to dress, how I should look, I don’t have a style. Back then I coped by copying others. I bought slinky tops and experimented with makeup. By my early twenties I was given the nickname ‘Boobies’. So it’s fair to say they felt like part of my identity and I saw them as one of my USP’s (unique selling points!)

Goodbye Bad Boobie

Now here I was at 40 years old and my USP’s were trying to kill me! I had so little time to prepare for the mastectomy that I didn’t prepare at all. I just wanted it off because I wanted the cancer out of me, I never had time to grieve or to think about the repercussions of such major surgery.

When I came round from the general anesthetic I’d been having a vivid, happy dream about a family picnic. But when I opened my bleary eyes and found myself in a curtained cubicle with drains coming out of my body I cried & cried.

‘It’s ok love’ said the well meaning nurse ‘it’s just the anesthetic , it makes you all emotional’ and I remember thinking ‘I’ve only got one breast. I’m a monster’.

I was in hospital for 4 days I think. At first I couldn’t bear to look at myself. N my husband helped me shower and I refused to look down or into mirrors. But then my beautiful sweet 3 year old L came to visit me and he said ‘Mummy can I see where the doctor snipped your boobie off’ and I thought, I have to look if L is brave enough to look. So we looked together and he said ‘Ow, that looks sore’ and I think I started to mentally detach from my body, from my physical self at that point. I didn’t look like me anymore so I stopped thinking of my body as mine. That probably sounds mental but I am mental, remember? And maybe it made everything easier to disassociate like that.

Limbo Land

The next few months were a blur. I refused to start chemotherapy until the second trimester when it is known to be safe in pregnancy. So suddenly I had 12 weeks of being in limbo land. I didn’t feel ill, I certainly didn’t feel like I was battling a deadly disease. My husband took on the role of cancer fighting dietician and began making me a daily fresh super juice of vegetables and fruits to boost my immune system and help our growing baby get strong. It was a labor of love on his part and as much as I was grateful, my word those juices tasted bad! Some days were better than others but beetroot, cabbage, watercress?! Those things should not be juiced in my humble opinion. There were days I kept that juice down. And days I vomited it straight back into the kitchen sink. But we persevered, hubs and I, because we wanted me to live and our baby to live.

So let’s talk prosthesis. Now remember as an Autistic woman I am hyper sensitive. I can feel the bracelet on my wrist, the shoes on my feet, every itchy label on my clothes. I can’t bear anything itchy or tight against my skin or anything that makes me sweat. My one remaining breast that started out as a FF cup was rapidly growing with the pregnancy and the lady at the specialist bra place measured me as an H cup! She proceeded to hand me a giant, flesh colored, wobbly dome of ridiculousness which she attempted to squeeze into my bra. Of course my bra wasn’t a mastectomy bra so had no supportive pocket. And although the lady had prosthesis in my size she said they didn’t have the special bras in my size…….

I think I managed about 2 weeks with that bloody thing. It was so big, so heavy. It made my shoulders ache and my bra strap cut in. I felt like a ridiculous fraud because nothing I did seemed to make the prosthesis sit parallel to my remaining breast. So I chose practical. I chose freedom. I chose to go without. To some it might seem horrible to go around lopsided with an H cup on one side and flat on the other. But I was comfortable and I ignored the stares. I even think I managed to forget half the time. I do remember tearing strips off of a random guy in a pub one Sunday lunchtime who I was convinced was laughing at me. ‘Do you think this is funny, do you?? I shrieked while N guided me to our table before I could embarrass myself any further.

The Dreaded Cold Cap

I was due to start chemotherapy in the September when I was 14 weeks pregnant. I was desperate not to lose my hair which probably sounds very vain but my hair was my only other physical USP in my opinion. I had long blonde hair like the Timotei girl on the shampoo adverts. I discussed my concerns with my oncologist, R, and he recommended I ‘cold cap’. The theory is you wear this skin tight fabric helmet that is strapped tight under your chin, during each session of chemo. Coolant is pumped around the helmet and literally freezes your hair follicles so the chemo can’t get to them. One word. Ouch! I mean seriously, it is a torture device. Sensory hell for even the most chilled out person (no pun intended). Plus it looks bloody stupid. Each chemo session I would sit there clawing the arms of the chair, stuffing my face with chocolate, feeling like any second I would have to rip that damn cap off. But you know I never did. I stuck it out. Because I wanted to keep my hair. And I did keep my hair, well most of it anyway. I even kept my eyebrows and eyelashes. Ironically 3 days after finishing my last chemo I woke up on my 40th birthday and my eyelashes and eyebrows were no more! Just tufty pufty whisps of stray eyebrow and stubbly patchy eyelashes. I was heavily pregnant by this point, 32 weeks with a glorious bump and I was so very grateful that all the scans showed H was thriving. But I mean seriously, to lose my eyebrows and eyelashes on my 40th?? Someone up there was having a right laugh at my expense.

Welcoming our Warrior

4 weeks later at 34 weeks gestation H was delivered by planned Caesarean section. We had to get him out early because my oncologist was anxious for me to start radiotherapy which can’t be done while you’re pregnant. We knew H would probably need to stay in special baby care for a bit but to be honest I was so desperate to meet him I don’t think I could have lasted another day. L had been delivered by emergency caesarian so I was out cold and missed his arrival. Therefore it was such a treat to be awake for H’s birth. My only regret is that I wasn’t able to keep my knickers on! In my typical Autistic naivety I thought as he was coming out of my belly and not my lady bits, that I’d be able to keep my pants on…I must confess I had developed a crush on my Obstetrician, a silver haired hero of a man who’d scanned me every two weeks during the pregnancy. The thought of him seeing my lady garden was rather mortifying but my husband had a good laugh about it!

And then we were four, but the Boobie was no more!

And this is where I’ll sign off for now. It’s almost 1am and I’m back on school run duty tomorrow. So I’ll leave you with the happy image of us cuddling our incredible tiny warrior H. He needed a little help breathing & feeding but he was a fighter like his Mummy and fit as a fiddle.

Do come by again if you’d like to hear more about my journey with Autism and Bipolar and if you are enjoying my blog please consider following me. Thank you!

Is anyone out there?..

People say you should speak out if you have mental health problems. That you should confide in those close to you. That you should ask for help. But what if those close to you can’t help? What if those people are part of the problem? Because mental health problems are polarizing. Not everyone wants to save (or be saved). A lot of people find mental health issues unsavory. Unattractive. Weak. Irritating. Inconvenient. So when a highly vulnerable, unstable person with already fragile mental health confides in someone close to them and that person belittles and begrudges, makes personal or derogatory comments, what are you supposed to do? Where are you supposed to go?

To be clear, I’m not trying to point the finger here. I accept and appreciate that it can be a huge burden to support someone with mental health issues. It can be confusing, time consuming and emotionally draining. And because mental health issues rarely (in my experience) go away for good, that can feel suffocating for the supporter. Especially if they are supporting an Autistic person with mental health issues like me. Which is why my husband is regarded by most as a living Saint for coping with my special brand of crazy for the last 15 years…

When feelings run deep

Now, there are lots of misconceptions about Autism. One of the most frustrating is that we don’t have empathy, that we don’t have feelings. Let me tell you that’s a crock of shit. We are some of the most highly sensitive humans on the planet. We feel things so deeply, so strongly that it can physically hurt. Our happiness is euphoric, our sadness devastating and our anger, explosive. Rejection (perceived or actual) cripples us. Injustice consumes us.

So what happens when a highly sensitive, emotionally vulnerable, socially awkward, Autistic person encounters an upsetting situation or event that sends their mental health into free fall and the person or persons who usually support them were the one(s) who actually pushed them off the side of the cliff?……….

After the freefall

Your GP can issue meds to help you cope (assuming you’re not medicated already). Now I’ve been medicated for the last 7 years and I would not be alive without these meds. Fact. I’ve tried to come off of them twice during that time, slowly and sensibly, once to get pregnant and once because of pressure from others who’d managed to wean themselves off and live medication free. And I’m happy for those people, I really am. But I’d be lying if I didn’t admit it grinds my gears the way society views antidepressants and how it’s celebrated when someone comes off them. Because I tried twice and turned into paranoid psycho bitch from planet Evil!

Let’s talk therapy

If your mental health issues are judged to be mild to moderate (this is a medical classification which in my opinion, doesn’t necessarily reflect the hurt & suffering of the patient), you can refer yourself to ‘Time to Talk’ for therapy. But the waitlist is many months long and they have a very specific remit (‘Bipolar? Too severe! Sorry love your names not down you’re not coming in’).

On the one occasion the Sussex Mental Health line picked up my call (after many months of only hearing an answerphone message to call back later) the woman told me to stop crying, run a hot bath and eat some comfort food, because ‘there is no-one coming to help you right now’. Firstly, this is NOT good advice for a secret binge eater. Secondly, she left me completely without hope because when I stopped crying enough to breathe I challenged her – ‘so you’re telling me unless I try to kill myself no one will help me?’ ‘Basically yes’ she replied.

I’ve even called the Samaritans once, which for some reason felt desperately pathetic – I guess because it symbolized that I had no-one else in my life to talk to except a stranger on the phone. The lady who spoke with me was patient, kind, gentle. She listened. But what I needed was answers. I was panicking. Lost. Stuck in a vicious cycle. I needed practical advice. A plan. And of course the Samaritans can’t do that.

Time to rewind…

I can track my mental health problems, specifically my anxiety and OCD, back to when I was a young child. I can remember hanging over the banister at bedtime yelling downstairs ‘I love you mummy darling. I love you. I love yoooooou’ on repeat because I was terrified she wouldn’t be there when I woke up. My father (let’s call him Mr Domestic Violence and the reason I was so scared Mum would disappear) would yell back ‘shut the fuck up’. Then I’d creep into my brothers room and stand there in the dark, trying to hear their breathing. If I couldn’t, I’d put my fingers in front of their noses and try to feel their breath. Because I had to check they were alive before I could go to sleep. Eventually I’d clamber into my bed and start counting out on my fingers ‘I am going to have a dream. I’m not. I am. I’m not’ again and again until I landed on an ‘I’m not’ finger that could be trusted. Because vivid and violent nightmares have plagued my whole life and as a child, sleep was not a safe place for me. As an adult this has improved but the night terrors still come, to the point my husband is woken by me crying in my sleep, or I startle awake in utter terror convinced there is an intruder but I can’t move because I am physically paralyzed as if someone heavy is laying on top of me.

As a teenager I took myself to the doctors, sobbing that I thought I was ‘mad’ because of the violent, emotional meltdowns I regularly experienced. (I was not diagnosed as Autistic until I was 42, the lack of early diagnosis compounded my confusion and sense of isolation with regards to my mental health). The doctor just laughed at me and said I couldn’t be mad because mad people rarely acknowledge their madness. That’s when I started to use alcohol and food as a coping mechanism. Not on a daily basis. But the alcohol became a prop to survive social situations and enable me to be the friendly, gregarious, slightly outrageous friend I felt I was expected to be. The binge eating was my dirty secret, something that both comforted and repulsed me.

In my mid twenties when my first marriage ended I fell into a deep depression. That was the first time my GP offered medication to manage my low mood. But after 2 weeks of popping Prozac I succumbed to peer pressure and stopped taking them (‘tablets won’t help, they’ll just make you a zombie, only you can pull yourself out of this’ etc etc). And so I struggled on, self medicating with alcohol when required to socialize, scoffing mars bars and cherry bakewells in large quantities when no one was looking. That’s not to say I didn’t try and help myself. I enjoyed exercise and maintained a healthy weight. I read self help books in my desperate quest to find out WHY I had anxiety and depression. I even remarried, someone who professed to love me and (by his own admission) wanted to give me the happy life I deserved after my traumatic childhood and adolescence.

Ironically it was a series of traumatic events that occurred during my second marriage that started me on the yellow brick road to answers.

Significant trauma 1:

In 2010 we lost our first son Pablo to a rare lethal chromosome disorder during pregnancy – a son we’d planned and desperately wanted. One day I will tell his story properly. What I can say now is that his death was the single worst thing that’s ever happened to me. As an Autistic woman with hypersensitivity I can still feel his body slipping out of me 9 years later. I lost a massive part of myself when he died and a divide opened up between my husband and I because he just didn’t feel what I felt. His grief was so different to mine. Mine was the colour of fire, the sound of explosions, it gave me physical pain. The guilt, the regret, torturing myself with philosophical questions about where Pablo’s soul was and if he’d return to me. My husband’s grief was shades of grey. It was quiet. Private. He forgets easily and focuses on the future where as I feel every stabbing pain of my past like it was yesterday.

The NHS bereavement counselor I saw after Pablo was kind. She listened. I cried. Her abstract questions and ‘games’ (placing plastic figurines in a sand tray, sifting postcards for pictures I could relate to) were lost on me. I threw myself into tending his grave and trying to get pregnant again.

And then comes a rainbow

In 2011 my rainbow L was born. I had never been so happy. He was everything I’d ever wanted. Suddenly I had this tiny human who loved me unconditionally and it was so easy to give myself over to him completely. I had never experienced such love and I felt like my soul was finally starting to heal.

What I failed to notice was that my anxiety and OCD had skyrocketed. My safety related rituals and behaviors controlled every aspect of my day. I didn’t trust anyone else to care for him and would supervise every nappy change done by Dad or Grandma like I was their Chief Examiner in a life or death test. I was terrified L would stop breathing and when I settled him each night I’d count kisses and the flashing light on the monitor, recite a mantra about his future, one more kiss, one more stroke, over and over and over until I felt it was safe to leave the room. Meanwhile my husband was quietly suffering. He felt alienated, rejected. He had gone from adored to invisible. My high anxiety meant I would frequently snap and berate him, leaving him feeling not good enough.

Home truths

I remember around the 6 month mark, in my bubble of happiness, so in love with our son, I asked my husband what he thought about trying for another baby. His reply is seared on my heart… ‘I’m never going through the last 6 months again’.

I was beyond devastated. I couldn’t believe that he’d experienced things so differently to me. Once again I started to question my sanity. Am I mad? Is what I’m experiencing real? This sent me into a deep depression and eventually when L was just over one year old, I tried again to get professional help. This time my husband went with me. Whilst the GP was sympathetic, he openly admitted that he didn’t know how to get me the help I needed. He wanted to refer me to mental health services but he didn’t know who to refer me to. I can’t describe my frustration and hopelessness at that point. The way I saw it, if a qualified doctor didn’t know how to help me then maybe there was no help. Thankfully, my husband located the details of a private psychiatrist and so began my sessions with Dr R, a man who has rescued me from self destruction and mental annihilation on multiple occasions since.

God bless psychiatry

It made the world of difference seeing a psychiatrist and I was quickly diagnosed with depression, anxiety, obsessive compulsivene disorder (OCD) and symptoms of post traumatic stress disorder (PTSD). Dr R immediately put me on medication for my depression and anxiety and I began a program of CBT sessions (cognitive behavioral therapy) to address what the hospital saw as the priority – my OCD.

Of course at this point my Autism diagnosis was still 5 years away. If they had known I was autistic it’s questionable whether CBT would’ve been used. But my experience overall was positive because for the first time I was able to revisit my past and I started to recognize that my distrust of others, fear of rejection and need for control stemmed from my childhood and adolescence. In truth, these things stem from my Autism first and foremost, but my experiences growing up definitely compounded my issues included my poor emotional regulation.

Happy times aka the calm before the storm

And so my husband and I entered into a period of relative stability. I was calmer and kinder, he was more patient and understanding. L brought us intense happiness and we could focus on loving each other as a couple and as a family. My mental health felt good and I actually started to like myself and to build tentative friendships with work colleagues and extended family.

That’s when God decided to throw me another massive curveball, because apparently he only tests those he thinks can cope (she said through gritted teeth)…