Living with my anxiety: intolerance of uncertainty

By finding the courage to share my anxieties, I realise that I’m not alone and that it’s perfectly normal and natural to have those thoughts. I guess they only lead to anxiety when I keep replaying them, I don’t share them, I hide away from them and I don’t think about what it is that is really troubling me or causing me to worry. Since losing Esme I have become more determined to get to know my anxiety and to be in control of it, life is too short for unnecessary worrying. I often face my anxious thoughts or anything I feel I am running away from head on. After doing this, I find I have learnt from those anxieties and they consequently dissolve into thin air.

My anxious thoughts aren’t always black and white and it’s not just a matter of sitting down with a pen and paper and working through them. Sometimes my anxiety is like an active volcano. It can lay dormant for weeks or months but be bubbling away below the surface and it’s only when the heart palpitations start, the recurrent asking of questions to which there are no answers or the endless research begins, that I realise I am trying to grasp at the impossible and I am unable to let go of something which is out of my, or anyone else’s control as it is an unknown that lies in the future.

I feel like a weight has been lifted once I realise that my thoughts are linked to my anxiety. My anxiety brings with it unnecessary worry and there is a great sense of relief once I become aware of what my anxieties are, how to get a grip and overcome them and how to let go of them. This takes time and practice and it’s sometimes hard to understand and accept that I have had these thoughts because I suffer from a mental health issue, anxiety, that is invisible to many, yet behind my smile there may be suffering or a constant mental battle.

Motherhood and Anxiety

Nothing could have prepared me for having my girls prematurely. There was very little certainty during my time on the neonatal unit. Along with becoming a mother for the first time and all the fears I experienced of potentially losing both girls, I had to muster so much strength into preventing my anxiety from taking over. I was so grateful for my cognitive behaviour therapy (CBT) sessions, being aware of my intolerance of uncertainty and the skills I had learnt to overcome it, such as writing in a diary, understanding that there are sometimes no answers; no one could predict the future for me and tell me both of my girls would be fine and would be coming home. It was a matter of making the most of each day or at times, each hour. It was about looking at my girls and training my mind to only see the best; to look at their beautiful features, to feel the love as their mother and to believe in hope that all would be ok. One of the hardest parts of my day was leaving Charlotte and Esme and walking out of the intensive care door. Every time I left, I felt my maternal instinct and mother nature screaming at me. When I was away from the neonatal ward, the fear intensified, panic often set in and my anxiety heightened. I had to learn to trust the neonatal nurses, otherwise I would have lost my mind and probably my health would have suffered.

 

Becoming a mother and raising Charlotte is one of the best things that has ever happened to me. But being able to shake off my mother’s worry is an ongoing journey and a tricky thing to learn. Although I feel in control of my anxiety, I often find it difficult to separate what are natural ‘mother’ thoughts, what are thoughts that are natural but have been heightened due to having my girls prematurely and losing a baby, and what are thoughts that are linked to my anxiety.

I have found the roots of my anxiety are always the same and are linked to my intolerance of uncertainty. My anxiety centres around whatever is at the forefront of my life and what I feel I haven’t complete control over. As I am becoming more aware of these roots, I am finding that I am more in control of my mind and able to recognise the triggers. This makes me feel a different person. I am more honest with myself and am learning to face, cope, embrace and handle my worries and fears before my anxiety gets the better of me.

Below are my uncertainties which are linked to motherhood and how I have been learning to take control of them:

Uncertainty with Charlotte

Ever since Charlotte was born extremely prematurely and we found out about the bleed on the left side of her brain, I have been anxious about how these might affect her future. I had a tendency to work myself up about everything, about each stage of her development, whether she would achieve the therapy targets and what the extent of the damage was that the bleed had done. During my tough days, I would look at her struggling to do things and feel guilty that I was the cause and it was my fault, for giving birth to her prematurely.

Up until the moment Charlotte held both my hands, took her first steps and I witnessed her walking happily across the room on both legs did I decide that enough was enough and that I had to work harder at letting go of my anxieties. I was doing myself no favours. With the help of professionals, the guilt and responsibility I felt for her bleed and prematurity have begun to subside. I am learning to accept it was not my or anyone’s fault I delivered the twins so early nor could I have done anything to prevent it. As the consultant has said, “It is most likely to be a ‘twin thing”.

Being a mum to a premature baby, and one which came home on oxygen, brought with it anxieties about going out in public or going to baby classes. I felt I was forever being asked “How old is she?”

I guess “How old is she?” is a perfectly normal question to ask, I even ask it myself. However, in the first few months after bringing Charlotte home, I found answering that question painful and heartbreaking as it often meant explaining her extreme prematurity and that she is a surviving twin. Up until Charlotte turned one I found it quite emotionally draining constantly having to justify why she is small for her age or explaining why she might not have achieved the normal ‘milestones’ or ‘expectations’. Today, depending on the situation, I still do feel the need to justify Charlotte’s age and say how old she is and then explain her corrected age (her due date). Maybe this is me just being paranoid about what people will think in comparison to their own child or maybe it is about giving Charlotte a chance?

Regardless of the questioning about Charlotte’s age or the stares at her size or being on home oxygen, I made sure not to hide away in the house. I had waited long enough to bring Charlotte home and I was determined to not let other people get the better of me.

With regards to baby groups and classes, I haven’t taken Charlotte to many for a number of reasons. When she came out of hospital it was the height of cold and flu season. Due to Charlotte being on home oxygen and having chronic lung disease, I was advised not to attend any classes until the following spring. I then avoided all classes or groups the following winter for fear of returning to hospital with bronchiolitis. On the other hand, the classes aren’t really my cup of tea and I would much rather organise a playdate. I have always made sure to meet up with friends and their babies, as much for my sake as for Charlotte’s. Today, I do enjoy taking Charlotte to playgroup and watching how she interacts and plays with other children and parents.

Taking control:

I am learning to let go of my anxieties about each stage of Charlotte’s development and I’m learning to trust her. Learning to trust that she will get there in her own time and in her own way.

It has been about accepting that I am doing everything I can to help her and to let go of what I can’t control.

With regards to the therapy targets, it’s been about understanding that the exercises and targets are there to help her. They are guidelines, targets, and it’s ok if they’re not achieved in ‘x’ number of weeks. I don’t put any pressure on Charlotte to achieve them, I go at her pace, but internally I have found that my anxiety builds up the closer we get to the next therapy session when she hasn’t achieved the target that the physiotherapist or occupational therapist has set. However, she may have excelled at other things during that time and I have learnt not to get hung up on that specific target as she will achieve it when she’s ready.

 

Uncertainty of seeing twins

It has now been almost twenty months since Esme died. Although I still struggle at seeing twins and it pulls at my heartstrings, I do feel more in control of my anxieties about seeing twins. I have accepted that I am and always will be a mother of twins, even if you can see only one.

Anytime I leave the house there is the possibility of seeing twins. In fact, I don’t have to leave the house as I see them on social media and the television.

When I come across twins and I’m at home, the anxiety doesn’t bother me as I can cry, be quiet and have my moment, but when I’m out of the comfort of my own home and on my harder days, these questions have often played on my mind:

Will I be able to cope?
What if I haven’t got the strength to hold it together?
What if I just miss Esme too much?

When I’m out and about and I see twins:

I just want to stare
I think about how old they might be. Whether they look similar or different. How they play and interact with one another and the differences in their personalities. I imagine the answers to these questions if Esme was still here.
How would I dress them or do their hair? Although I’m pretty certain I know the answer to that. They would share the same wardrobe but I would dress them differently.
Would Charlotte continue to always be the wild one, into everything and Esme the quieter, calmer one? Would they switch depending on the situation?
I become lost in a world of longing. A longing to know what Charlotte and Esme would look like playing together. A longing to know their similarities and differences. A longing to have a taste of motherhood with both twins in my arms.

What would my life be like?

Would I be as happy as I am now?
Would I be enjoying motherhood as much as I am now?
Would I be more stressed and tired raising two girls on earth in comparison to raising one and living with the emotional pain of losing one?
Would I have the same passion as I do now for raising awareness of prematurity? I certainly wouldn’t have the drive to hope that I can help increase sensitivity to baby loss.

Taking control:

I have accepted that there are no rules or deadlines for answering these questions. Some don’t need to have an answer and for others it is ok to just let my imagination go and think about how life might have been.

Despite the anxieties of anticipating the next time I might see twins, I can’t and won’t live my life avoiding them.

Yes, I do feel like my heart stops for a second when I see a double buggy coming towards me, or two children with the same height, same coat and same colour hair, but I refuse to live my life with the fear of my anxieties becoming real. I would rather come across twins and deal with it, rather than hide away.

Every time I see twins, especially twin girls, it brings with it a new set of thoughts, wonderings and ‘what ifs’. But each time I learn from these experiences and become a little bit stronger and a little bit more knowledgeable about the next time when faced with seeing twins again. This in itself has helped to reduce my anxieties about seeing them.

One of the hardest things since becoming a mother of twins and then losing one, is learning and understanding that I am and always will be a mother of twins. I am learning that the more I talk about my pregnancy with twins (thanks to this current pregnancy), surviving the loss of Esme, and raising Charlotte, the more I feel like a mother of twins again.

This has been through talking to friends, family, through writing and social media, setting up Campbellinas and becoming involved in the neonatal unit and charities such as Tommy’s and Bliss, who are striving to reduce prematurity and support those who have lost a baby.

 

Uncertainty with this pregnancy

New anxieties

For the majority of my first trimester and half of my second trimester I felt so desperate to get past 24+3 weeks, (when Charlotte’s waters went) and then 26+6 weeks (when the girls were born). After that I was then desperate to get to 28 weeks, when I was in the antenatal ward, as this was the next target I wanted to reach. I felt terrified of history repeating itself.

It felt like it took forever to get through my pregnancy from 20 to 30 weeks. During this time I was unable to bring anything into the house related to the baby for fear of tempting fate and never bringing him home. With the support from others and my consultant, I learnt that this was ok to feel this way, that there is no hurry and that the time will come when I feel happy to start getting things ready, whether that is in my third trimester, when he is born or when I bring him home.

It was only when I reached 29 weeks that I started to enjoy and fully embrace this pregnancy. The old, familiar excited pregnancy feeling began to return and I felt able to begin preparing for his arrival. It felt exciting to be the most pregnant I have ever been and to be in a part of this pregnancy that I have nothing to compare to. For each day that goes by, it reassures me to know that this little one grows that bit bigger and stronger. Although this is a totally different pregnancy and I am pregnant with just one, it still doesn’t take away my fears or anxieties of something going wrong.

At 29 weeks, new anxieties began to arise. I started to feel anxious about the baby’s movements and not knowing enough about regular movements and what I should expect. I automatically jumped to thinking the worst. Feeling an emotional, panicked wreck, I booked an appointment at the maternity day unit for peace of mind and reassurance.

What I didn’t expect was all the flashbacks of being attached to the heartbeat monitors from my time when I was in the antenatal ward, the day Charlotte’s heartbeat plummeted and then being rushed in for an emergency caesarean. That realisation I wasn’t coping was tough. The tears hurt and my heart hurt from the tragedy of nearly losing Charlotte and then losing Esme. I guess after going through a traumatic experience and coping with grief, you never know when strong memories will return and knock you off balance.

 

That said, I am pleased I went in. The midwife and student midwife were incredible and I now have an individual programme in place which means I can go in whenever I feel the need. It felt good to lie there in the safety of the hospital, listening to this one’s heartbeat. He’s much better behaved than the girls were. I didn’t have to stay attached to the monitors for hours and he gave an excellent heartbeat trace. Unlike the girls who were called the “naughty twins” by the midwives as due to their size it was a nightmare picking up two clear heartbeats.

I learnt a valuable lesson that day, never to feel a burden and if I’m unsure or anxious about anything, that support is always there.

Baby showers

Life after losing a baby brings with it a permanent rollercoaster of emotions, many of which are mixed and quite often leave me not knowing what I’m feeling or why I’m feeling that way.

When I was 30 weeks pregnant, it was my sister’s baby shower. A day that for many weeks I felt anxious, emotional and confused about, not to mention very guilty that I hadn’t had it in me to organise it for my sister. Was it because I’d planned mine for my twin girls, then the day I was supposed to have it, I was saying goodbye to Esme? Was it because I never got the chance to have mine? Was it because baby showers are full of the excitement of bringing a baby home and I only brought one of mine home? I don’t know, I just really struggled with the lead up to the day.

However, as with many of the days that I have felt anxious about, which have turned out to be such lovely, happy days. I want to say the biggest “thank you” to my sister for having a heart of gold and for always being so supportive and understanding. She has helped me so much in surviving this pregnancy and I enjoyed celebrating her baby shower with her.

I have often been asked if I will be having a baby shower but at the moment, at the start of my third trimester, I just don’t have it in me. I daren’t do it. I’ve just about got around to adjusting to the idea that this baby will be coming home, let alone planning a party celebrating the anticipation of his safe arrival. I’m quite happy to be in this mindset and don’t feel pressured to have a baby shower or annoyed with myself that I’m unable to have one for fear that he might not come home.

One surprising yet amazing thing that did come out of my sister’s baby shower was that it filled me with more hope than ever that this little one will be coming home.

Once I was 30 weeks pregnant, I washed all his newborn and 0-3 month clothes and set up a corner for him in our bedroom. It felt real and exciting to do this and the time did feel right. For those reasons I’m pleased I didn’t push myself into doing it when I wasn’t emotionally ready.

Holding my two babies in my arms again

Pregnancy after loss can be an absolute minefield. It is hard striking a balance between being excited for this baby’s arrival, being scared of history repeating itself and then being anxious at the thought that when this baby is born it might feel like a replacement for Esme. Of course, I know that will never happen, but the anxieties are there. Esme will always have a big place in my heart. Just like she shares my love with Charlotte now, I imagine my love will just continue to grow for this baby too.

My dream of one day holding two of my babes in my arms is getting closer. I cannot wait for this but it also brings with it elements of guilt towards Esme. I shared this with a friend and want to share what she replied as it rings true in so many ways:

Yes pregnancy after loss is riddled with guilt whenever you dare to feel excited about the new baby. I think it’s because life is moving forward and you so desperately wish that Esme was here to share the excitement with you. However moving forward is not forgetting her. She cannot be here physically but she will always live in the memories of those that knew her and the hearts of those that know of her. And moving forward honours her memory, she fought so hard for the weeks of life she had she would not want you, Connor and Charlotte to do anything but squeeze every last ounce of excitement/happiness out of your lives. I also think it’s that whole worrying about feeling excited/happy in case you are somehow tempting fate thing too. I know I used to feel scared to be excited/happy because everything had gone so horribly wrong before that I couldn’t trust that it would be ok this time (but it was, twice (and every day I am grateful for how bloody lucky I am (even today, battling tonsillitis (me), random viral thing with rash (not chickenpox but he keeps telling everyone it is) and more bloody croup (my girl!)

Her message helped to put everything into perspective. I want to say it gave me permission for having all of those guilty thoughts about Esme and this baby, but in actual fact it seems it is only human and only natural to feel this way.

Taking control:

Motherhood, life and pregnancy after loss have all brought with them many new anxieties and at times it has been only too easy to relive my worst nightmares.

As I plough on through my third trimester, I feel that a weight has been lifted to know hope is beginning to outweigh fear.

Just like when Charlotte’s waters went, when the girls were born, when Esme died and when we brought Charlotte home, I think the secret to staying calm during this pregnancy is taking one day at time.

I have learnt to never be afraid of asking for help. If I am unsure of anything then instead of turning to Google, I’m far better off ringing the midwife, maternity assessment unit or the day unit to answer my questions and put my anxieties to rest. On those few occasions I have done so, my mind has been put at ease.

There’s no hurry or need to be in a different emotional place. Whether it is wishing the weeks away to be further along in the pregnancy, accepting that this baby will, hopefully, be coming home, washing his newborn clothes or packing my hospital bag, that day will come when I am ready for it.