Mindset and Wellbeing

I haven’t blogged for a year.

A whole year.

Why? Well my physical health worsened and as such my anxiety became effected and when my anxiety is heightened I struggle to write, I struggle to do many things that I normally do, and had a serious case of ‘writers block’. I also feel that once you have a break from something it is hard to get yourself back into it. During that period of time I attempted to start a few different blogs, some more Endometriosis awareness related ones and ideas for sharing my ’40 things by 40′ journey, but I also started this one on mindset and wellbeing and I felt that today, being Mental Health Awareness day, felt like a good time to complete and share it, after being both amazed and impressed by the sheer number of people that have opened up on my social medias. I am writing this not just to raise awareness of mental health issues but to share coping mechanisms too:

 

Why am I writing this series of blogs on positive mindset and wellbeing? Well, it is an area I have interest in, have had some training on, done some writing on before, read about, carried out some of my own research on and searched out images to support this online.

I’m not ashamed to admit that I have had therapy over the years, aged 21 when my friend Laura had died, my friend Meral was seriously ill with a brain tumour, I’d had 8 asthma attacks in a 5 week period, my sister was battling with eating disorders and addiction issues (which I’m proud to say she overcame a couple of years later and has now been clean over 10 years! I asked her permission to mention that in my blog a long time ago when I was writing this in the first place and she was happy for me to mention as she was proud of her achievement too) and I had finished university but didn’t know what I wanted my next step in life to be. I had therapy again after the birth of my son, as when he was just a baby I appeared as a witness in a court case and it was one of the most stressful experiences I have had to go through, I was trying to deal with daily pain, had developed anaphylactic allergies and I was also the victim of someone making up and spreading a rumour about me and basically bullying me as an adult, which I genuinely thought people would have grown out of by their late 20s, which was causing me distress too. More recently I had therapy after my 2nd miscarriage, I did not cope with it well, plus my pain issues were ongoing and I was not conceiving again. I am ashamed of none of this, in fact I am proud that I have acted to face my demons, such as obsessive-compulsive disorder, perfectionism and anxiety, but I have to work to stay on top of them, work on my personal development, work on having a positive mindset and work to be successful in any way I can be and not let my problems beat me. In fact, as my health has overwhelmed me a lot recently and I’ve had more deaths to contend with, I’ve been on the waiting list to get therapy again.

I am in no way trying to claim to be an expert in the field, I am just explaining my interest and experience and what has led me to want to write about it. Now, the areas of mindset and wellbeing are vast, so therefore I have decided to write about it as part of a series, addressing different aspects in different posts. So, the first part I will address is growth mindset…

It is important to understand how a growth mindset and resilience can help improve your personal development. If you are struggling with your mental health you will find it a barrier to believing in yourself and to having positivity and it may stop you stepping forward or making progress in areas of importance to you, like your career, your friendships, socially, etc. If you have a growth mindset, you will begin to have a positive attitude which should reflect in your behaviour and your actions.

A question that is often asked is; are people naturally born to achieve and succeed? The answer is no, it takes many factors such as perseverance, hard work, positive mindset and reflection, but if you work on your mental health by seeking therapy, meditating, being mindful or accepting medication from your doctor, there’s no reason you should not be able to achieve all those factors. Einstein’s teacher said that he was ‘academically subnormal’. Michael Jordan’s coach said he was no more talented than other people. Walt Disney was told that he lacked ‘creative imagination’. The point is we all have the potential to fulfil our dreams, regardless of what challenges we may face on our journey, some people’s challenges may be physical, others may be mental, but we are all on a tough road in different ways.

According to Carol Dweck’s ‘Self Theories’ there are two mindsets – Fixed mindset and Growth mindset. Those with a Fixed mindset, who won’t change their thinking on things, and those with a Growth mindset, who can change, grow and develop, who enjoy effort and the process of learning and improving. The latter is the one we want to aim for, we are rarely entirely one or the other but are a bit of both, but Growth mindset is the side of ourselves we should be focussing on. You can see the difference between the mindset’s in the below image.

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We actively work at encouraging children to think with a growth mindset now days and I, for one, think it will create a generation that persevere and have self-belief, which can only be a good thing. We currently have a mental health crisis in this country, particularly in young men, with suicide being their greatest killer, and I hold out great hope that if we address this with young children, and throughout their school years, then it will prevent the next generation following suit.

Carol Dweck has also written a book called ‘Mindset: The New Psychology of Success’. According to her book we can learn how to be successful. The fact is that practice makes perfect, if you want to improve at something then you must work at it. If you feel nervous about trying something, keep trying, if you doubt your knowledge, do your research, if you have knockbacks pick yourself up and keep at it, see each problem as a challenge to overcome, not a setback to avoid. Learn from your mistakes, don’t make the same mistake twice, have a positive mental attitude (PMA) and remember that failure is success if we learn from it. It all sounds great on paper but in reality in life we will always face setbacks and if our mental health is one of those setbacks then we need to look at ways in which to look after that first before we can contemplate moving forward (such as therapy, meditation, mindfulness, medication, as mentioned above).

Once we’ve dealt with those setbacks we will learn more about who are as people, what we can and cannot cope with and what coping mechanisms work for us and that all has an impact on what path our life will follow. It is easy to say ‘if you feel nervous about talking to people, keep putting yourself out there’, but if you suffer from crippling anxiety that is often easier said than done, or ‘effort is essential to achieve’, but if you have depression that is so severe you can’t even get out of bed then effort and achievement will be the last things on your mind. In which case, only once conventional medical routes for support with that anxiety or depression have been attempted and addressed can you being to think about the things that are part of the bigger picture.

 

If people have found this useful and there is interest, then the next blog in the ‘mindset and wellbeing’ series will be about the power of praise and positive self-talk and should hopefully give some methods to overcome some of those barriers. The following one would be about developing your own personalised wellbeing strategy, one about the power of affirmations and one about support from friends.

It may feel ironic that I started this post by stating that I have been struggling lately but the writing of this post has focussed my mind and made me think about things I need to work on and strategies I should be using, which can only be a good thing. This World Mental Health Day, I am hopeful that it has had that benefit for someone else too. Most importantly, remember to be kind to yourself and those around you and remember that you are enough.

 

 

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Mental Health Awareness Day

This wasn’t going to be my next blog, it was going to be baking themed (so that is still to come at some point!), but I felt I shouldn’t miss this opportunity to write about something so important, triggered by seeing posts on social media, by my little superman’s school raising awareness of it and hearing about it on the radio today. I’m glad the awareness is being spread about something so important.

So, what is Mental Health Awareness Day?

“World Mental Health Day (10 October) is a day for global mental health education, awareness and advocacy against social stigma. It was first celebrated in 1992 at the initiative of the World Federation for Mental Health, a global mental health organization with members and contacts in more than 150 countries.”

What is mental illness?

Mental illness comes in many different guises:

  • Depression
  • Anxiety
  • Obsessive Compulsive Disorder
  • Eating Disorders
  • Addiction
  • Bi-polar Disorder
  • Psychosis
  • Schizophrenia
  • Post-Traumatic Stress Disorder
  • Personality Disorders
  • Post-Natal Depression
  • Post-Natal Psychosis
  • Self-harm

To list just the first ones that spring to mind. I am no professional in this field and I am sure that it is far more wide-reaching than my list suggests. They can also vary greatly in severity, with some being manageable, whilst others being entirely debilitating. One can be treated in a variety of ways too, hospital admissions, talking therapies, either individually or as part of groups, guided self-help, medications, art therapy, music therapy, to list just a few.

While people think of mental illness as different to physical illness the ultimate outcome can still be as severe, with addiction, eating disorders and suicide taking lives. The effect on quality of life is also as serious as living with any other chronic illness and, like with many chronic illnesses, one of the hard things about it is that it is an invisible illness. People can’t see that you are ill and thus may not be as supportive as they may be with other disabling illnesses. This is ultimately why awareness is so important and, more than that, it is important to be kind. Always.

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We need to remove the stigma around mental health, we need open discourse around the subject so people feel safe to share that they are suffering, we need people to know that it is ok to not be ok.

mental health awareness

I am a great believer in the power of talk and have had counselling 3 times in my life so far (and am currently on the waiting list for more following my diagnosis and issues this summer). I am not good at coping with loss/death for example (who is?!) and am not ashamed that I have reached out for help in difficult times of my life. Actually, I am actively proud of the fact I do and I hope that the fact I talk about it with relative openness means that other friends know that it’s ok to seek help when they need it. I also hope that all friends of mine know that whenever they need someone I will always be there for them, whether on the phone, via messages or in person. I have been blessed with some truly wonderful friends who are equally always there for me, although I think going through tough times definitely does show you who your true friends are. Thank you to my friend Sam for sharing this image earlier today:

mental health awareness day

In short, mental wellbeing is extremely important, without it we cannot function properly, we cannot achieve to the best of our ability and we cannot look after others properly unless we look after ourselves too. Think about how on a flight they always say to put on your own breathing mask in the case of an emergency before helping others, if you cannot breathe you are no good to anyone else, the same applies in other situations.

I also think that it is fitting that this day falls within Baby Loss Awareness Month as loss can trigger a mental health ‘episode’, for want of a better way to phrase it, so if you have been through such a loss be gentle and kind to yourself, allow yourself time to grieve, allow those that want to be there for you to be there and allow yourself to sit next to your babies grave and sob, if that’s what it takes to start dealing with it and start feeling better.

As mentioned above, the ultimate conclusion to battling mental health can be suicide. If you are feeling suicidal or having suicidal thoughts please reach out, tell someone, ask for help or call Samaritans on 116 123 if you’re in the UK or via www.samaritans.org or go to your GP.

I have heard this song a few times on the radio and believe that it is fabulous that such an issue is making its way into the mainstream consciousness via the medium of popular music, it’s a great video that accompanies the track too. My understanding is that the number in the title is the USA’s equivalent phone number for those that are suicidal: https://www.youtube.com/watch?v=Kb24RrHIbFk

Please remember you are important even when you don’t feel it.

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40 things by 40

Bucket list/40 things by 40 (and one for luck!)

Yesterday was my 33rd birthday, I was absolutely blessed to spend the whole weekend with some of the most wonderful humans, not only in my life, but possibly in this world. It’s not a big or special birthday but it felt like a big deal to me when I haven’t been my usual sociable self for the last few months so it meant a lot that so many people made a special effort for me. So, I’m starting this blog by sending massive thanks to all those people. You really are an awesome bunch.

Those that are my Facebook friends will know that when I turned 30 I did a 30 days of gratitude type thing and so for a while I had been thinking that 40 is the next big birthday and I had thought that when it got nearer I would want to do something for it. The lovely Joanna did a 30 things by 30, my friend Cat had also done something similar a few years back when she was turning 30, my brother’s girlfriend’s dad has turned 60 and has a list of 60 things he wants to do/achieve, so I guess all those people with all those targets have kept the idea on my mind.

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Why am I deciding to do it when I still have 7 years to go until 40? Well, there are a few reasons. One is that I’m a list writer anyway, I find lists helpful for plan making etc. Another is that I need things to look forward to and this is one way to do it. Also, I like a challenge. Finally, I now have this blog so it’s a good way to record the completion or planning of each of these undertakings, extra stories to tell as it were. Physically I sometimes struggle lately and a lot of these challenges are physical endeavours so it’s better that I’ve got several years in which to complete them as I can spread them out. Plus, they involve going to many different countries – Scotland, Wales, Tanzania, Italy, South Africa, Australia and/or New Zealand, France, USA/Hawaii, Iceland, Maldives, Peru, etc – so it would have been too much to squeeze into a short length of time.

I feel I’ve already done quite a lot in my life, I have been lucky, lots of volunteering in various capacities, done a skydive, surfed, been in a helicopter, etc, so it was a challenge in itself to think of the list, but once I got going I found it hard to stop! Some of these are already in the planning, others not at all – I will write comments alongside them so if anyone wants to be part of any of these challenges please let me know! So, the list (drum roll please):

  1. Have another child (if not biologically then adopted).
  2. Flash mob in song in memory of Scott on his birthday. – I’m hoping to do this for this year’s birthday but there’s not long to plan it as it’s in October so if not next year’s birthday.
  3. Perform on a West End stage (or at least MK theatre). – Any suggestions on how I can action this would be appreciated… Bethan Blake I’m looking at you and Cameron?!
  4. Renew my wedding vows with Mark. – This is planned for the summer of 2024 in Hawaii so plenty of time to sort!
  5. Climb Kilimanjaro. – I had been hoping to do it this year but due to my health am missing out so WILL do it in the next few years.
  6. Meet some Liverpool players.
  7. Do a cycle challenge. – Mark does an annual one with a group of friends so this should be easy to jump on, but if their challenges are too hard for me then I’m sure I can find another to do.
  8. Fly a plane. – Easy enough to buy vouchers to do this at some point, Mark already has one, as does our friend Dave, so hopefully I’ll do it when they do.
  9. Do wing walking.
  10. Complete the National 3 Peaks (even if not within the 24 hour mark).
  11. Visit Lake Garda to see Tim’s final resting place. – Tim was a friend that died when we were 13 and we’re planning a long weekend next summer with our friends the Barkers.
  12. Be a zoo keeper for a day at Whipsnade zoo.
  13. Bungee jump in South Africa. – I will go to South Africa several times anyway, as my sister and nephew live there, just need to sort the jump.
  14. Tour Australia and/or New Zealand in a camper van. – We’re possibly heading to this part of the world next year anyway for my best friend’s husband’s 40th, so I will propose incorporating a camper van into the plans.
  15. Be the sole choreographer on a dance that gets performed to an audience. – My best friend teaches bellydance so has her own company that I’m part of meaning this should be doable anyway.
  16. Write a song that gets performed to an audience.
  17. Cook a 5 course vegan meal for guests.
  18. Walk all the peaks in the Lake District. – The incredible Rachael Rogan is planning a similar challenge, as is Ralph (brother’s girlfriend’s dad mentioned above), so between them and my usual walking group this is definitely achievable.
  19. Hang glide on ski’s. – I’ve been saying I’ve wanted to do this for years so this list will mean that I will definitely finally do it!
  20. Walk to the top of Courchevel’s Saulire peak and back down to Le Praz.
  21. Zip wire in Las Vegas.
  22. Go to Iceland to see the Northern Lights.
  23. Hire a Mustang for a road trip holiday.
  24. Stay in a water villa in the Maldives.
  25. Get my children’s book published. – If you read the ‘about me’ section then you’d know I’d written one, otherwise probably not as I’ve kept it fairly quiet.
  26. Do ski slalom. – I have skied since I was 11 and have never done slalom so am determined to rectify this.
  27. Sing the National Anthem on the hallowed turf of Wembley (as part of a choir if not a soloist).
  28. Feature in an LFC programme again in some form. – I say ‘again’ as there was a note in it 2 months after I was born congratulating my parents!
  29. Do the crystal maze (if it ends before we get to do it then get together with a group of friends to create our own version). – Since I wrote this list I have spoken about this with a group of friends and we should be doing it in the new year, if enough others would like to join us we could probably do 2 teams.
  30. Go Ape.
  31. Do a water float obstacle course like Total Wipeout (maybe Box End).
  32. Run a 10k challenge (even if I have to walk some of it!).
  33. Perform in a comedy show. – I’m looking at my friend Moj for this one as he’s a stand up comedian!
  34. Share some of my poetry publicly. – I write poems but have always kept them private, at some point I will share some on this blog though.
  35. Do a kayak challenge or learn to surf in a kayak. – This should be easy to coordinate as Mark used to be a kayak instructor.
  36. Enter a baking comp with a 4 tier free from cake (and preferably place!)
  37. Design and make a piece of jewellery. – My friend Lorna doesn’t yet know that I’m planning on coming to her for this!
  38. Do the Inca trail in Peru.
  39. Do a muddy obstacle course challenge (i.e. Swanbourne challenge/tough mudder/suffering challenge/pretty muddy/etc).
  40. Go tubing in Hawaii. – When we’re there to renew our vows.
  41. Go to a yoga retreat. – OK so I found it too hard to keep it to only 40 as there wasn’t anything I wanted to drop from the list… in fact I just kept thinking of more things, like going in a hot air balloon, going in a natural hot spring, etc etc, but I’ve stopped here!

In addition to the above, raise at least £2000 for charities doing the challenges, primarily for Endometriosis UK, and raise endometriosis awareness on my blog.

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Endlessly Enduring Endometriosis

I haven’t posted on the blog for a few weeks, predominately because life has got a bit busier with me being back at work, although I have put in a bit of time trying to familiarise myself with how to run the blog. I’m still not entirely au fait with this, however I have had a helping hand from Hannah over at hanplans.co.uk and will continue experimenting. (I’ve created a ‘things that make me happy’ section but am yet to fill it with any blogs!)

When I started this blog I stated that it was partly due to keeping myself occupied whilst in hospital and that I’d do a post about my health and my admissions at some point down the line… Well I felt it was time to move on from sharing old pieces I’ve written to doing just that, although I have found this hard to write as it is what I am living right now.

 

Between mid-June and late July I was hospitalised 3 times, one of which was for surgery. It was a laparoscopy which is a keyhole surgery to access the abdomen. It is often done as an investigative surgery and cameras are used but it can become more invasive depending on what is found. If it is purely investigative it is counted as minor surgery and the expected recovery period is 1-2 weeks, however if more is required, such as incisions, separation of adhesions, excision or ablation (the burning or lasering away of tissue) it can be considered an intermediate surgery and the recovery can be up to 6 weeks. Unfortunately, I fell into the latter category, once they investigated they diagnosed stage 3, verging on stage 4, endometriosis, my ovaries were adhered together behind my womb by endometrial tissue, which had been suspected anyway from my previous ultrasound scan, and were separated during the surgery, other endometrial tissue was also removed, as was tissue which was the remains of a burst ‘chocolate cyst’, my Pouch of Douglas, which is the area between the reproductive and toileting organs, was partially obliterated with endometriosis and my fallopian tubes were both blocked and filled with fluid (there is suspicion it is also on other organs that weren’t looked at in the surgery). The understanding is that I will be unable to have any further children naturally due to this situation and IFV will probably be my only option if we decide we wish to add to our family biologically and obviously there are no guarantees with that. I’m now having gonadotrophin-releasing hormone (GnRH) analogues as monthly injections into my abdomen. These injections induce a fake and temporary menopause, complete with hormonal emotions, hot flushes and aches, plus a bruised swollen abdomen. I have more surgery in my future to look forward to as well.

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It seems our last baby may have been a miracle and this diagnosis may have been easier to bare had that baby survived. One of the hardest things is being told I may not be able to be pregnant again but constantly having a bloated tummy and feeling like I look pregnant and like people may be wondering if I am pregnant. As my abdomen is so sore I have ceased wearing trousers or tights of late and therefore am mostly living in loose dresses, partly so my tummy is less visible, partly for comfort and partly to stop being so hot with the hot flushes. I will be literally boiling hot and hear a comment like ‘you know it’s not summer any more’ or ‘aren’t you cold?’ Yes, I do and no I’m not, my internal thermometer thinks I’m a radiator on full blast!

zoladex The Zoladex injection is a pretty big needle!

It has been a somewhat dramatic couple of months and the reason I am choosing to share this is to raise awareness of endometriosis, to make me feel less alone and to make sure if there’s anyone else who goes through this that they know they can contact me for support if they want to or need to. It is so isolating to feel like you’re going through these things alone and that isolation can lead to mental health problems, which is a big reason I try to be open and honest about issues I am contending with. I want to avoid feeling isolated myself and prevent others from feeling alone too. It sounds bizarre but, after all of this, I feel better for at least having some answers about what is going on with my body, they may not be the answers I’d ideally have wanted, but they’re answers nonetheless and there’s little worse than not knowing. Although I can’t pretend that I haven’t had a few anxiety attacks in these last few months.

So, what is endometriosis?

It is any, or all, of the below:

  • Adhesions
  • Bloating/swelling
  • Back pain
  • Cramps
  • Sore breasts
  • Abdominal pain
  • Bowel pain
  • Pain when urinating
  • Cysts
  • Infertility
  • Repeated hospitalisations
  • Repeated surgeries
  • Skin flare ups
  • Collapsing
  • Headaches and/or migraines
  • Insomnia due to pain
  • Vaginal pain
  • Pelvic pain
  • Fatigue
  • Issues with constipation and/or lose stools
  • Bleeding
  • Anaemia
  • Variable emotions
  • Hot flushes
  • Joint aches
  • Increased risk of miscarriage
  • Increased risk of certain cancers
  • Increased risk of certain infections
  • Removal of reproductive organs
  • Incurable
  • The emotions that come with all the above

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Some people may have more issues that occur due to their ‘endo’, as it is abbreviated to, although that makes it sound almost affectionate and I’m pretty sure there is not one single sufferer who feels any affection towards this disease. Generally, it is not considered fatal, however very rarely it has implanted on the heart, the lungs (leading to collapsed lungs) and even the brain, so it can be extremely serious and there also seems to be a moderately high rate of suicide attempts of patients who suffer from endometriosis.

It is not known what causes this disease, however there are several theories, some of which are, according to http://www.nhs.uk/Conditions/Endometriosis/Pages/Introduction.aspx :

  • ‘genetics – the condition tends to run in families, and affects people of certain ethnic groups more than others
  • retrograde menstruation – when some of the womb lining flows up through the fallopian tubes and embeds itself on the organs of the pelvis, rather than leaving the body as a period
  • a problem with the immune system (the body’s natural defence against illness and infection)
  • endometrium cells spreading through the body in the bloodstream or lymphatic system (a series of tubes and glands that form part of the immune system)

But none of these theories fully explain why endometriosis occurs. It’s likely the condition is caused by a combination of different factors.’

It was ranked by The Guardian (http://www.independent.co.uk/life-style/physical-pain-most-excruciating-kidney-stones-cracked-ribs-gout-shingles-a7791606.html) as one of the worst pains a person can experience, worse than childbirth, and up there with pancreatitis, cancer, heart attack and broken bones. I consider myself to have a rather high pain threshold, I have survived pancreatitis, gone through childbirth without pain relief, have 6 tattoos and have danced and skied with broken toes, yet endometriosis pain can stop me in my tracks, leave me crying in a curled-up ball on the floor, make me wish there was ANYTHING I could do to make it stop. If you know anyone with endometriosis at any stage just please be aware of the level of pain they could potentially be in and understand if they ever need to abandon plans or are struggling.

I am ridiculously stubborn and have massive fear of missing out so rarely let my health stop me doing things, so if I ever bail on things the pain is extreme. People often ask how I keep smiling; well I have also had so many times in life I shoulda/woulda/coulda died (8 asthma attacks in a 5 week period in 2006, spun across 3 lanes on a wet M25 – somehow completely unscathed – in 2007, pancreatitis in 2008, 3 x haemorrhages in 2013, full blown anaphylaxis in 2013, 2014 and 2016 – when I put it on paper it looks crazy that I’m still here) so I have a real sense that I HAVE to live life to the fullest as much as I can and enjoy it and that I won’t let anything defeat me. I have also developed a good brave face so just because I seem OK it doesn’t mean I am, I imagine this is common of many people suffering chronic invisible illnesses.

When reading up on endometriosis I was shocked to discover how common it can be, with 1 in 10 women suffering, although at varying stages and with differing levels of pain and symptoms, so some women may be relatively OK with it, whilst others are enduring severe agony. Another astounding statistic I came across was that it takes an average of 7 years for a woman to get a diagnosis from when they become symptomatic. I now believe, as I look back on my life and history, that I have probably had this illness since my teenage years, just to a less debilitating degree, however it was since my pancreatitis in 2008 that the severe symptoms began, so I had 9 and a half years of daily pain before a diagnosis. My friend Kat said several years ago that my symptoms could be gynaecological so I had queried that with my gastro consultant but they said anything like that would have been picked up in scans I’d had, however scans don’t pick up endo, only adhesions, and I must not have had any at that point.

My mum also suspected endometriosis 18 months ago and I queried that at a GP appointment. I requested referral to gynaecology from that appointment and continually for a year until I finally got referred. If I had been referred when I first requested it I’d have had answers sooner, I may not have had the June admission, which was put down to a burst cyst, because the cyst would have been removed before it got that far, and I therefore wouldn’t have collapsed. My tubes would also may not have got to the severe state that they’re in and consequently fertility may not have been the problem for me that it is now. Endometriosis is notoriously hard to diagnose, partially due to having so many symptoms that overlap with other health issues and to some extent because it can only be confirmed through a laparoscopy and they don’t want to do surgery unless they feel it is entirely necessary. There are quite a lot of celebrities that have spoken out about endo, which can only be a good thing as it raises awareness of the disease. Some examples can be found here: http://www.huffingtonpost.com/entry/celebrities-with-endometriosis_us_56e1ba4ee4b065e2e3d51bca

One thing I find frustrating when reading up on endometriosis is the focus being so much on periods and period pain when the adhesions can cause daily pain, not solely when on your cycle, however it is worth reading up as much as possible. Another piece of advice I have to give is to find a support network, whether that’s turning to understanding friends and family, whether it’s counselling or group therapies or whether it’s by joining online groups, such as the Facebook groups ‘Endometriosis and Me’, ‘Endo Fight Club’ (see my t-shirt in the pictures) and ‘Nancy’s Nook Endometriosis Discussion and Education’ to talk to people who know what you are contending with, or all of the above.

endo fight club tshirt - blowing kiss

 

 

Me, wishing I could kiss endo goodbye, wearing my Endo Fight Club #Endosister t-shirt!

 

 

 

 

For further information on this awful disease, The Metro has done a series of articles on endo including this one: http://metro.co.uk/2017/06/26/endometriosis-is-much-more-than-just-bad-period-pains-6732128/ (and you can find links to other Metro endo articles through it).

The Guardian have also done these pieces (and others):

https://www.theguardian.com/society/2017/sep/06/years-of-pain-but-no-diagnosis-one-womans-experience-of-endometriosis

https://www.theguardian.com/society/2017/sep/06/listen-to-women-uk-doctors-issued-with-first-guidance-on-endometriosis

The BBC have done this: http://www.bbc.co.uk/news/health-41159269?SThisFB

Other useful articles I have come across:

http://www.teenvogue.com/story/hysterectomies-for-endometriosis

http://endometriosis.org/news/opinion/five-things-that-pelvic-health-physical-therapy-can-do-to-improve-your-endometriosis-related-pain/

https://www.ncbi.nlm.nih.gov/pubmed/21420910

https://www.mdlinx.com/obstetrics-gynecology/medical-news-article/2011/05/12/endometriosis/3589791/

http://www.independent.ie/life/health-wellbeing/health-features/girls-should-be-taught-all-about-endometriosis-in-school-so-they-know-that-it-can-affect-their-fertility-30496414.html

https://ribbonrx.com/2016/12/03/how-to-support-a-loved-one-who-has-endometriosis/

http://www.larabriden.com/endometriosis-is-autoimmune/

http://www.endoempowered.com/20-symptoms-of-endometriosis/

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What’s in a name?

This is a variation on a little something I wrote for our son’s naming ceremony a few years ago, which we called a Glistening (play on Christening, do you see what we did there?!). As I’ve made the decision to not call my son by name on my blog for his own privacy I have obviously omitted the full story of how we came to decision of his name but I hope it’s still a worthwhile piece to share nonetheless:

What’s in a name? Well, as Shakespeare said ‘What’s in a name? That which we call a rose by any other name would smell as sweet; so Romeo would, were he not Romeo call’d, retain that dear perfection which he owes without that title.’ Our son would still be the amazing child he is with or without the name we gave him, that goes without saying. But everyone does have to be named and that name will stay with them for the rest of their lives. As much as I love the Shakespeare quote I began with, the name rose is one we know, one we hear and think ‘oh how lovely’ if we’re fans of them, or one we hear and think ‘too strong a scent’ if we suffer bad hayfever, etc. So, although a rose would still smell the same regardless of its name, its name has become synonymous with the thoughts it brings to each and every one of us. The same can be said of our names, they stick with us through our lives and people make associations with them.

What association did we have with the little ‘mini-B’ that was growing in my tummy? Well he was long awaited for one thing, we’d been together a very long time. The name we gave him represents us and our relationship. It actually came about as a result of a silly conversation. We were talking several years prior to children being on the cards with my siblings; my sister and I straight away thought it was just perfect for a potential son one day. Mark, caught up in the excitement and silliness of this conversation, pinky promised on the name and you all know you can’t break a pinky promise.

So labour came around and after the pregnancy and birth I’d been through Mark said the decision was mine and there was no other name on the list that was even an option to me. It was perfect, it represented us, it was unusual (which as a teacher I wanted), it was classic and most importantly it suited him and he rapidly became our little superhero in the tough weeks that followed as a result of his premature birth.

One of the gifts we gave him at his naming ceremony was a plaque which reads ‘sometimes, real superheroes live in the hearts of small children fighting big battles’. As I’ve already said, he is our little superhero making this appropriate, but also some money from its purchase went towards a charity that is helping premature babies.

We’re traditionalists and the middle names are representative of both of our fathers. He really does represent our family unit and our love for him and each other.

Just to return to the ‘what’s in a name?’ You may have wondered why we decided to call his naming ceremony a ‘glistening’, well we felt that ‘naming ceremony’ sounded a bit formal and we wanted something that sounded fun, something to represent both our personalities and our relationship with our son; full of glisten, shining and enjoyment. Every day is precious, just like our son.

So what is in a name? It seems an awful lot…

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Why I Volunteer and What it Means to Me

This was not what I was going to write my next blog on, I was planning on doing one on positivity, wellbeing and mindset as the start of a series of blogs, however I have had a bit of writers block on the subject and have concluded that perhaps I’m struggling as my mind isn’t in the right place to be covering that subject matter, so here’s a different blog instead…

I am currently a volunteer for the Samaritan’s (I’m not a listener but part of the training team), Bedford Friends of Refugees, Access Bedford (who run events and opportunities for deaf people) and the Labour party and am also on the list to assist on our local children’s book festival, to help at a group that feed homeless people and to perform at a Music Hall event for prostate cancer, so a piece on volunteering still has relevence to me, even though I wrote it over 3 years ago, for the newsletter of an organisation I volunteered for. This is an updated edit of it:

verb: volunteer

1. freely offer to do something.

2. work for an organisation without being paid.

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Volunteering means more to me than simply giving my time without being paid. The sense of satisfaction gained from knowing that the little bit of help given will make a difference to someone and knowing that vital funds are being raised through that assistance is important to me. Volunteering is about building relationships with people, which is rewarding for all involved and therefore it is not completely altruistic, however it is also about committing to something more important than yourself.

I cannot remember a time when I was not involved in volunteering or fundraising. As far back as I can recollect I was undertaking sponsored events or giving up my time, whether to Oxfam, nursing homes, youth clubs, etc., eventually even setting up my own charity to support an orphanage in South Africa with my sister and 2 friends. With all this in mind, there was no question why I wanted to assist local charities, so I have been involved with Bedford Daycare Hospice, Bedford’s Prebend Centre for the homeless, Beds and Northants MS Centre and danced at a Milton Keynes based charity for asthma. Bedford is the town I grew up in, it is my home, the place where most of the people I know or that are regularly in my life are based. Most importantly, it is the town in which my son was born. All of this means that if anything were to happen to someone I love, then local causes would be what would care for them, so what better for me to champion?

My patronage of Bedford Daycare Hospice, specifically, grew exponentially after meeting some of the clients whose final months have been improved by the Hospice’s involvement. Sam was someone who was well known around the Hospice and meeting her spurred me on to continue committing my time there. She consistently sang the praises of the facility and the people within it, making me aware how vital it is to making those final days better. Sadly, Sam passed on but we are safe in the knowledge that she had a happy place to go to, and that continuing to help fund that place will make other lives that little bit better near the end. I also met another client who inspired me with her positive attitude despite everything she was going through, inevitably she was not having an easy time, however she thanked me for doing what I can. She referred to the Hospice as her haven, a place she can go each week to escape. I would like to take this opportunity to thank her for being such an inspiration, and for reminding me of the importance of the Hospice.

This is what it is all about, this is why I want to make a difference, I want to make peoples’ lives a little better by ensuring all the amazing resources and facilities mentioned keep running for the good of the people of Bedford.

Please remember these amenities all exist to help, so if you’re ever in need of talking to someone don’t hesitate to call the Samaritans, if you’re deaf and need assistance utilise Access Bedford, if you become homeless know you can turn to the Prebend Centre, if you have MS use the MS Centre and if you’re diagnosed with a terminal illness you may find the hospice invaluable. Also, if you ever find yourself with some time to spare, why not put it to good use and volunteer? You get to feel good and help others at the same time!

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I was told I’d had a missed miscarriage. I had no idea what this meant

This piece was published back in May 2016 as part of Tommy’s #miscourage campaign, on the day we expected our baby to arrive. It was shared again a couple of months ago because my son became one of the faces of Waterbabies’ Splashathon campaign to raise money for Tommy’s (there is a link at the end of this blog). The tagline or blurb or however you want to refer to it was ‘I did not understand how it was possible for your baby to have died inside you, and you and your body not even know.’ I found the experience of writing it both heartbreaking and cathartic. This was edited by the Tommy’s team (my original was deemed a bit too graphic) but is my own words and story:

I started writing this on New Year’s Day, a painful reminder that this year was not beginning as I thought it would be. I’m now revisiting it and updating it because today, 28th April 2016, I should have been going on maternity leave and it is so very painful to think about that when my last words at my part time job today were ‘see you next week’ but I do love my job and the people I work with so I know I’ll get through the next few weeks.

I should begin by saying I am blessed, I have a husband who I have been with since school who is my best friend, a loving dog, an incredible 2 year old son, lots of friends and a lovely house. Despite all these blessings I have faced hardship in my life, as everyone does. I know on the surface people just see a happy, positive person when they look at me, as that is predominately who I am, but I have faced ill health for many years, a challenging pregnancy with my son and should really be the mother of a 5 year old already if my body didn’t keep failing me.

That’s how miscarriage makes you feel, like your body has failed you, like you aren’t even capable of doing the one thing that we are put on this earth to achieve, reproduction.

And not once but twice. With the one child I have managed to carry being such a challenging pregnancy that I began seeing specialists about whether it was a good idea to even have another child biologically over a year before my miscarriage.

I was always keen to have another child biologically if I could, once I’d had one child I did crave the feeling of a baby growing inside me, feeling its kicks, its hiccups, the ability to breastfeed again, despite the vomiting that I suspected would go on throughout, and the other scares that came with my last pregnancy.

After a few months of various appointments we decided I was going to come off the pill and we were going to try for a sibling for our son. Months later, after trying, we were moving house when I began vomiting, the first signs of the little life that had begun to grow in my womb.

We loved our baby from the moment those two lines appeared on the pregnancy test. After 9 months of build up between the hospital appointments and trying to conceive, it felt like this life had always been a part of me. The dreams for our child’s future began. I couldn’t see siblings together without envisaging my son with his younger sibling, especially as he’s so good with little babies and was continually showing me what a wonderful big brother he is destined to be. I feel like not only has my husband and I been robbed of our child, but my son has been robbed of his sibling.

My previous experience of miscarriage had been a heavy bleed with lots of clotting and pain at 6 weeks. Once I passed the 6 week stage, was when I began to feel safer, my little bump was growing. I was still sick (despite medication), my boobs were huge… all signs that things were as they should be right? I had a little bit of spotting from fairly early on, and a bit of tummy pain (that I put down to my uterus growing), and at repeated midwife appointments I was reassured that these things were normal and I shouldn’t worry, even as I found the amount of blood lost had increased beyond just ‘a little bit of spotting’.

The morning of 4th December 2015 I was so excited, I was 13 weeks pregnant and was going to see my baby for the first time!

Sadly this wasn’t to go as anticipated. I was told I’d had a missed miscarriage. I had no idea what this meant. I had not heard this term before. Unfortunately I discovered that it meant my baby had been dead for a while (we weren’t given any specific timescale, but we suspect up to a couple of weeks). I did not understand how it was possible for your baby to have died inside you, and you and your body not even know.

“But I’m still being sick”, “but I have a bump”, “but my boobs are huge”, all phrases I babbled out in my emotional state, “I haven’t had any proper bleeding”, “I haven’t had any bad stomach cramps or pains”, I went on and on. The very possibility that this had happened seemed inconceivable to me, a miscarriage was what happened early on with a heavy bleed, I’d got so far and had no major bleeding, how had this happened? Why had this happened? What had I done wrong?

I have been on a roller coaster of emotions since the news at my scan. We then had to make a decision: 1. let nature take its course and see if I miscarry naturally, 2. have vaginal tablets that would effectively induce the miscarriage to pass the remains, or 3. have a surgical procedure to remove the remains.

I initially wanted to go down the natural route, however I then panicked as I realised that I wouldn’t cope with continuing to have pregnancy symptoms knowing my baby had died, so opted for the vaginal tablets on 7th December. I still had the weekend to get through but my hubby and I decided to carry on as normal (despite me feeling as though I had been emotionally torn into a thousand pieces) for the sake of our son and for the sake of Christmas plans.

Over the course of those few days, I swung from wanting the pregnancy to be over, as it felt like torture, to desperately wanting to stay pregnant, as I felt like once I went into the hospital, my baby truly was dead. My little baby I had 3 months of dreams and aspirations for.

Monday 7th December 2015 was worse still than 4th December because of what I went through physically, whereas the scan had been more of an emotional trauma at the news. Within the first 10 minutes of receiving the tablet, I passed a clot as large as my hand and I truly thought that was it, I had passed whatever I was meant to. Little did I know that I was about to pass several clots like that an hour, getting through 4 pairs of knickers despite having pads on that were like adult nappies.

After nearly 8 hours of bleeding at this rate, I suddenly became quite ill and the nurses became concerned. A doctor had to remove the remains with forceps. I had to cope with 8 hours of physical hell, just like with my labour with my son, however that time I got to keep a baby at the end of it. This time I was in so much pain I took more pain relief than I did in my previous labour. It felt somewhat ironic that I hadn’t opted for the surgical removal because I felt it would be more invasive when I had gone through all that pain and blood loss and had ended up with forceps intervention anyway.

We got the choice of what we wanted to happen with the remains and we opted for burial, we held a graveside service on 7th January 2016, exactly a month after the hospital procedure, and I believe it has helped to give us closure on this life that should have been but wasn’t.

We have now given our baby a name, we opted for a gender neutral name as we never knew if it was a girl or a boy so the service was held for Mackenzie Ashley Laurie.

Another thing that I hadn’t anticipated was my breasts beginning to leak. I leaked milk for a while so it was a continued reminder of how much my body had wanted this child. I was torn with what to do with this milk but in the end decided that if I could express enough then I would donate it so that another parent and baby could benefit from my loss.

Sadly that wasn’t to be, as I only expressed a few ounces, but I currently have it frozen and will send it off to be made into breast milk jewellery as a reminder of my angel baby.

Christmas and New Year made it nigh on impossible to even contemplate moving on, being the kind of times of year where you think about how you wish things were, I have been doing a lot of ‘what ifs’. Around then was also what should have been our next midwife appointment, our 16 week one, which would have been the first my husband had attended and our first time hearing our baby’s heartbeat, a pretty painful date, as was the date that should have been our next scan and our next specialist appointment. I can’t help wondering if it’s going to still feel like this until May and beyond when we would have expected to be holding our tiny newborn in our arms.

It was also really hard to move on emotionally because I had complications, I bled, passing some clots and still cramping for 9 weeks. The doctors suspected I had a womb infection so put me on antibiotics but it transpired it wasn’t, it was ‘retained product’. This meant that I hadn’t passed all the tissue from the pregnancy when my miscarriage was induced or when they intervened with the forceps. I then passed a large, hard lump after work one day, freaked out and went to the hospital.

I was eventually given the ‘all clear’, but there is no worse feeling in the world than seeing your empty womb when there should be a baby growing inside it.

I had become anaemic from all the blood loss and am on the iron. Part of me wishes I had been warned that these complications could happen, and feels angry about not knowing, but the other part of me completely understands that it would be scare-mongering already fragile women to put those possibilities out there if most women don’t go through the same physical ordeal I did.

This physical trauma has only served to compound the emotional trauma I was also going through.

Guilt is definitely the prevalent emotion for me. Guilt at whether I did anything wrong which lead to me losing our baby, even though I can’t think of it. Guilt at feeling the level of grief I am feeling when I know there are those worse off than me. Guilt that I’m so much more upset this time than I was in 2010, but then I continually justify being more upset as this baby was planned and I was so much further along in my pregnancy. But this guilt has also lead to us very belatedly giving that first lost baby a name too, Marley Jamie Terry. Guilt that I’ve failed my husband and my son by losing their child and sibling respectively. Guilt that I am so up and down emotionally that it could end up affecting the son I do have.

I feel a lot of anger at the world. Anger at those that caused me any stress in those months I was pregnant, in case it played a part. Anger at this happening to my little family. Anger at the fact that I’m so fearful at the idea of ever being pregnant again.

I guess these emotions are all part of grief and I am grieving that little person that knew what my heart sounded like from the inside, that little person that meant I was never alone.

For now, I will continue to do my best to smile through all the emotions I am feeling inside, for the good of myself, my son and my husband in the hope that at some point I will have something to smile about again because as they say “Someday, everything will make perfect sense. But for now, laugh at the confusion, smile through the tears, and keep reminding yourself that everything happens for a reason.” I have to hold onto the fact that something must have been wrong with my baby and that is the reason for this loss otherwise my ‘what ifs’ will go on forever.

Mackenzie (and Marley) will always be precious to us and we will always keep our babies in our hearts. At some point our son will be told about his angel siblings, and that they’re with nanny being looked after and given so many cuddles, cuddles that should have been ours.

Support Tommy’s by fundraising for Splashathon.

Placenta Previa – My Pregnancy and Birth Story

I’m returning to my original plan, after diverting to share with everyone about the awful loss Scott, by sharing a post that I have previously written, for someone else’s blog. My son is now 4 years old. This was edited by the person who’s blog it originally appeared in, but was my original words and is my story:

 

My pregnancy was a roller coaster from the word go and not least because I had Placenta Previa, potentially meaning I would have to have a c-section. Despite all the drama and the uncertainty and my gorgeous superman’s early health problems, I think it’s fair to say I was, and still am, one smitten mummy.

If you’re currently going through the ringer with your pregnancy, I hope you can take hope from my story. Despite the ups and downs, I now have a gorgeous healthy little boy! Eyes on the prize!

Being a mummy is the one thing that I have always known I wanted but due to my history, including some health problems, I was fearful of whether I’d manage to carry a baby. When it didn’t happen immediately and people around me were falling pregnant, I can’t deny that it affected me. I cried every time I came on my period, but it happened in the end and weeing on that positive stick was one of the best days of my life!

My pregnancy was far from easy, I was sick from a week before I even took the test, all the way through, including the labour and beyond. At the 20 week scan we were told I had Placenta Previa – the placenta was blocking the birth canal so I had to be booked in for an additional scan further along my pregnancy to see if it had moved. If it hadn’t I would have to have a planned caesarean. This was not my ideal birth, I had wanted a natural, active birth, preferably drug free and in a birthing pool!

The next challenge we faced was that we were involved in a bump in the car, which, although it wasn’t a major one, terrified me (and my husband who was driving). In addition I was working a demanding and physical job. Everyone repeatedly warned me to slow down, to put the baby and myself first, etc. and in future I will certainly take that advice because of what happened next.

At 31 weeks I haemorrhaged. It was literally the scariest moment of my life. Somehow I remained calm. I think it was the shock. I had felt liquid down below and initially thought I’d either wet myself or it was my waters breaking. As it was so early I thought the former, that is until I got on the toilet and there was blood everywhere, all over my knickers, trousers, down my legs, filling the toilet basin and on my hands. My husband called the hospital who told us to get there as soon as possible. All that ran through my head was ‘I’m losing my baby, I’m losing my baby…’ Thankfully when we got there they put me on the monitor and baby had a ‘textbook heartbeat’. Phew!

But it transpired that I was having contractions. I thought they were strong Braxton Hicks! The next 24 hours on the delivery ward were a blur of scans (which showed I still had Placenta Previa), being given something to stop the contractions, being injected with steroids to develop our baby’s lungs in case he was making an appearance and seeing the anaesthetist in case I was rushed in for an emergency C-section. All whilst constantly having my blood loss monitored.

Eventually the severity of the situation seemed to lessen. The contractions were stopping and so was the blood. I was moved up to the ward for the next 24 hours until the bleeding had completely stopped and I was allowed to leave. I was, however, warned that if I haemorrhaged again I would not be leaving the hospital until I had given birth. I was also warned that there was a risk that this baby could come prematurely. I was definitely preparing for a caesarean.

I made it to the planned scan at 35 weeks and, completely unexpectedly, the placenta had moved to 1cm away from the birth canal! I was allowed a natural birth. Yes! I was even told I could have the water birth I so wanted. But wait…

‘Are you in pain?’ ‘Should I be?’ ‘Your cervix is doing what it does when you’re going into labour…’

I was sent upstairs to the ward because they had concerns about the baby’s sizing, he was too small according to the scan. His heartbeat was still perfect and a specialist oversaw urine and blood tests, and blood pressure (looking for pre-eclampsia, which I didn’t have), and sent me downstairs for another scan (which ended up being my 9th during my pregnancy after all the drama!); a Doppler reading to check if the umbilical cord was doing its job properly, which it was. Then she looked at the monitoring machine…

‘Are you in pain?’ ‘Should I be? Because I’ve already been asked that…’ ‘You’re having contractions.’

I was clearly in labour, but I was in denial about it. Perhaps because last time I’d had contractions I’d left hospital with the baby still safe and snug in my womb.

After 4 hours in the hospital, we were able to leave but under instructions to come back in two days for monitoring, then three days later and two days after that. I was warned I probably wouldn’t make it to those appointments though as it looked like our little one was on his way.

How right they were. By the next day I was increasingly uncomfortable, although I think I was fortunate as I’d already been in labour for 24 hours. I was only in discomfort rather than pain. By 7pm this began to change and the contractions got stronger and closer together. My husband wanted to call the hospital but I knew they’d send us back so I got in the bath while he packed the rest of the hospital bag. By 9pm the contractions were 3 minutes apart and lasting a minute and were increasingly strong. The hospital said to bring me in.

By 10pm I was given two paracetamol and examined. I was 2-3cm dilated. Normally they’d send people home if they’re less than 5cm but because I was deemed high risk and they weren’t busy they decided I could go to the delivery suite. I was also told I couldn’t have my water birth (despite what I was told yesterday) because I was high risk. I got in the bath there though and I followed it with a shower so the water could massage my back, at which point I haemorrhaged again.

We pulled the red cord and the midwife came straight to us to return me to my bed. I continued labouring there attached to a blood pressure cuff and with a cannula inserted ‘just in case’. No more active labouring for me.

It was midnight and by now I was in a lot of pain and was finally asking for pain relief. They decided to examine me and I was 10cm; no time for drugs! I’d gone from 2-3cm to 10cm in 2 hours!

From then until 2:50am I was pushing, becoming more and more exhausted as our baby’s head kept appearing and then disappearing again until he finally entered the world! They’d wheeled in a resuscitation trolley but thankfully we didn’t need to it. He was promptly put on my chest for some skin to skin and my hubby cut his umbilical cord.

But, I haemorrhaged. Again. This time the midwife warned us that she was about to press a button and a lot of people would come in but not to panic. And panic I did not, I was far too drained to pay any attention to the women at my blood pressure cuff, putting a drip into my cannula, injecting me with stuff, dealing with my down below. My baby was safely in my arms and that was all I had the energy to pay attention to. It was a moment of calm amongst the storm that was going on around us in that delivery suite.

It took about an hour for the commotion to pass and then I still required some stitching up, but my other half got that as some daddy skin-to-skin time. I have never loved him more. It was crazy but I felt a completely different love seeing my husband holding our child for the first time, after 11 and a half years together I didn’t think I could see him differently any more but becoming parents together has made everything so different in both good and bad ways (bad being exhausted, that’s the only bad!).

Eventually he was weighed and checked over, once they’d finished dealing with me, and the baby that they were worried was too small was 6lb 5.5oz. Not a bad size at all for a month early!

Unfortunately, my little superman went on to have both low blood sugar (so low if it had dropped any lower he could have slipped into a coma) and jaundice and more weight loss than they ideally like for a premature baby, meaning we couldn’t leave hospital for another 8 days until he started to put on weight. And, for the next 12 weeks, it was a blur of doctors’ and hospital visits. You wouldn’t know it now though, he is an amazing little boy who learns something new every day, brings a smile to both our faces and our hearts, and is the blessing I always knew I wanted. I would go through the rollercoaster of conception, pregnancy, labour and his early days 10 times over to have him in my life.

Scott Brought Us Glee

Scott Waldrup. There are so many things that I could say about this man. He was extraordinary, remarkable and spectacular in every way. He was kind, caring, supportive and encouraging. He was a friend, confidant and playmate to all. And that’s just the start of the superlatives I could use about the man. He truly was one of the best, he was a star.

The last 6 and a half weeks have been really hard for me, not only because of the health issues I’ve been battling but because I have lost 2 people, had a funeral and a memorial celebration to attend and the birthday of a friend that died a few months ago… it doesn’t rain it pours hey?! It was 4 weeks ago today that I got the news that Scott had died during the night before, following on from one of his favourite holidays, Independence Day. It later transpired that our Scott had died a hero, pushing others out of the way of danger even though it meant his own life was lost.

I felt heartbroken when I got the news, crying for hours and barely able to talk. He was a darling who always made everyone smile, laugh and enjoy being around him. We had so many little ‘in jokes’, most of which were rude to match our cheeky personalities, he was amazingly theatrical and adored singing and dancing too, he was passionate for his friends and loved ones, and about politics and the LGBT community. I loved how he would fight against injustice and he once shared this post which I think summed up both of us quite well:

Scott Snowflake Quote

He always had a twinkle in his eye when he was up to mischief and gave great hugs, we had a mutual love of High School Musical and fancy dress and our nights out were always epic. One of my favourite memories of us was us geeking out by doing the dance together from High School Musical’s ‘We’re all in this together’, in fancy dress, for his 21st birthday, at the house he shared with my gorgeous Lise, which I’d attended with the wonderful Webbo.

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One thing I’m struggling with is that just days before his death I had talked to my hubby about the fact that we may go to America at some point in the next year or two and had begun thinking about the logistics of trying to visit him in Savannah and now it won’t happen. Another thing that has bothered me is how hard I’ve found his death when I wasn’t as close to him as some others and I feel guilt for that, I feel guilty feeling this awful when I can’t even begin to imagine how horrendous his family and partner feel, I feel bad for my tears when I’m sure his closest friends are crying an ocean more, I feel terrible that I didn’t make more effort to speak more over the years since he left London to return to America but so grateful for Facebook as it kept our sporadic contact going and I wish I had told him how much I loved him more. When I relayed these feelings to my friend Gem the day after his memorial celebration in London she shared some words with me that someone else had posted on social media. The writer of these words was Joyti Gurjot, who also went to my uni and was friends with Scott, although I didn’t know her personally, and she stated that:

“Whether you knew someone for 5 minutes or 5 decades; you are entitled to grieve for them when they pass.

You have the right to express your emotions;
You have the right to remember them as best you can;
You have a right to remain silent on the matter;
You have the right to share your memories of them;
You have a right not to share anything;
You have the right to cry at the loss of their life;
You have the right to make a tribute in honour of them;
You have the right to go through the motions.

No one knows what relationship you have with another person and they never will. The bonds we create with a person is just that – a bond between two people that others will not know or understand and that’s okay. No one needs to. Only you know how you got on with that person; what you shared; what you laughed about; what you cried about; what you learned from each other and why you will miss them dearly.

So mourn, grieve, remember and celebrate their life and memories in your way.. however you deal with it – it’s okay.”

 

These words helped me in my moment of confusion and I hope that they may help others that are grieving right now and I thank her for them.

Now, one further thing I want to mention in this spontaneous blog to my lost friend, is that there is a Memorial GoFundMe page here:

https://www.gofundme.com/scottwaldrup

This page exists because Scott’s $80,000 debts from his uni fees to study here in the UK are not being forgiven by his loan company, so in his death his debts have been passed on to his family. If they find a way to get the debts dropped then they intend to send the money raised to other good causes that Scott believed in or to help his partner who has now lost half of his world. It disgusts me that any family is left having to deal with the financial stuff when they are already having to cope with and deal with their grief. Scott’s sister Stacey said at our memorial celebration that despite having accrued so much debt from his choice to study in London that he wouldn’t have changed his time with us for anything in the world. To me that is worth contributing towards.

 

Love you Scotty, sleep well. Shine bright like the star that you are. Here are your friends in London celebrating your life. It was so nice for us all to have a reunion and we now plan to make it annual on 4th July. And I will continue to binge watch Glee for weeks to come because that’s just what you brought to our lives; song, dance, music, laughter, fun and pure unadulterated glee.

Scott's memorial

💛💚💙

My Musings on the Meaning of Life

So I thought I would begin this blogging journey by sharing pieces I’ve written and shared in various ways before, even though I didn’t have a blog of my own. That way I’m not feeling as sensitive and precious about my writing as it’s already been out there for people to see and people can get a jist of me and my writing style and let me know what they like and don’t like so I can make changes and improvements along the way. This first piece I originally wrote on 3rd April 2012 (when I’d been married a few years, but hadn’t become a mother yet) and I called it, ‘My Musings on the Meaning of Life’:

Today’s date is a significant date for me for reasons that I’m not going to go into, as I don’t want to sound like I’m dwelling on things, but I feel that I have a lot to be grateful for, which always gets me thinking. As part of these thoughts my mind went on a stroll towards childhood memories. My dad would sporadically put us to bed as small children and when he did he would veer between two phrases/questions, the oh-so-narcissistic ‘who do you love the most in the world?’ to which I would, of course, always answer with the most obsequious ‘you daddy’ and ‘Claireby, what’s the meaning of life?’ My standard answer to that second question was basically ‘dunno’, because what child’s mind really travels through such massive realms, but I think he would have been pretty astounded if I had come out with something profound!

Anyway, it’s led me here, to this post, and all the thoughts that have surrounded me today… the world we live in is one that is not always a nice one, waking up today to news of a shooting in America, thinking back to the scenes of the London riots last year, knowing that there are homeless/starving people around the world, recognising the injustices that humans put upon other humans in the form of politics and war, and of course, there’s then all the natural disasters that affect human life (draughts, floods, crop failures, etc), so what is the meaning of life when we are besieged by so much strife?

I think the meaning of life is down to the individual, you each have your meaning and I have mine, but there are some things that I would hope would be universal, such as being kind to your fellow human beings, striving for a world that is better than what we currently have for our future generations and creating new life so that we may live on through them, to name just a few. I endeavour on a daily basis to live by the mantras of ‘do unto others as you would have them do unto you’ and to appreciate how lucky I am, as there are always those worse off. I am by no means claiming to be perfect and I hope that none of this sounds like I am trying to; I am all too aware of my own imperfections and as such undertake to avoid surrounding myself with sycophants – if I do something wrong/thoughtlessly/incorrectly, etc. I know that the strong network of friends and family that surround me will tactfully put me in my place and argue against what I have said or done but giving intelligent articulate arguments as to why it is or isn’t the right thing. This is the best thing in life – if people debate with you then you will learn from them, question them, reflect on yourself and what you surround yourself with and thus grow as a person. I often make the jokey comment ‘every day’s a school day’ when I overtly learn something new but, in the words of one of my own essays about learning, ‘[learning is] the process through which people improve their aptitude to use their surroundings most effectively’ and ‘a lifelong skill, it involves change and the gaining of experience in order to distinguish the new knowledge’ and we are all doing this every day. In the words of Nelson Mandela, ‘education is the most powerful weapon you can use to change the world’ and in the words of Liverpool’s beloved Bill Shankly ’you have to believe you are the best and then make sure you are’ – both of which are important food for thought.

First Mandela – you’ll notice that today I posted a few references to Plan B’s Ill Manor’s (and yes I love the pun of the title), a song representing his views on last year’s London riots. His message about the inequality facing some parts of our society hits home hard, partly due to his hip hop art form, but primarily through his lyrics. He discusses the contradictions that surround us but without condoning the violence that occurred. His main point being that society all needs to take some level of responsibility for what happened, as society has failed some sectors of our youth – what is their meaning of life I wonder? This is where the theory of education as a weapon to change the world comes into play. I believe it is each and every one of our responsibility to do what we can to change a society that led to those riots, through understanding and through education. There is, however, no excuse for the destruction, violence, damage to people’s homes and businesses making them homeless and ruining their livelihoods and I feel that these ‘disenfranchised youths’ (as people keep referring to them as) are cutting off their noses to spite their face, this has cost the country a fortune, thus making the recession worse, cuts worse and meaning those that are on benefits will probably have their benefits cut – ultimately everyone has lost out. Initially I felt ashamed to be British that all this was happening, but I then felt proud to be British for those that hit the streets to try to clear up after the riots and for those in our emergency services doing what they could to reduce the severity of the situation and lastly I felt proud that there are so many in the British public trying to understand the root of the problem, without excusing the riots as there is no excusing it, let’s just hope it gets us somewhere. In the words of Whitney (who I think everyone knows I loved!) ‘I believe that children are our future, teach them well and let them lead the way’.

There are also many things that make Britain Great and I think it’s important we acknowledge these things to recognise how lucky we are to have such things available to us – the NHS (which saves many a life and a huge amount of money to individuals – in many other countries I would have spent more than a hundred and something pounds a year for the past few years for prescription charges and on top of that there would have been costs for each of the appointments), the state school system (which makes education accessible to all), social housing (for those who couldn’t afford housing privately), the benefits system (although it’s not perfect), to list but a few. There are many countries around the world screaming out for such things, countries where people live in townships/shanty towns in shacks smaller than my living room, not knowing where their next meal will come from, countries at war, countries fighting for the right to democracy which should be a human right anyway! What is the meaning of life in these countries? I think they take meaning from the small things, from the smile their child gives them when they first wake up in the morning, from the kind words from a neighbour and from something new they achieved in their day – I think these smaller things should also be the meaning of life to us all.

As stated, in the world we live in bad things will always continue to happen, whether we want otherwise or not, so life becomes about how we deal with these things. Someone (who I won’t name) once said something which made me very sad, it was in the context of someone we know who is very idealistic and wants her happy ever after (much like me, many of you are probably thinking!), and she said ‘doesn’t she know that life isn’t about being happy it’s about surviving’. I couldn’t disagree with this more, one of my meanings of life is definitely to strive for happiness, yes there are lots of tough things we have to survive along the way, but what’s to say that once we have survived them we won’t then achieve or even simply stumble across some kind of happiness. There will always be illness, there will always be death, there will always be pricks sexually assaulting or beating others, there will always be thieves, but if these things happen along your journey of life, what’s to say you won’t get through them and find happiness again?

I think far too many people place too much value on materialistic things in this world that we live in and it saddens me. Some might say, it’s easy for me to say as I’ve never really struggled financially, but I think it is important that everyone always remembers that the most important things in life are people. The people we surround ourselves with as our friends, the people whose lives we might only touch briefly, the people we go out of our way to help, the people we smile at or say good morning to as we pass them walking down the road, the people who we converge with as part of our jobs… these are what matter and these are what give meaning to life.

My meaning of life is as follows:

  1. To make a difference.
  2. To contribute to future generations.

If I do those things in only a small way I will die a happy woman. I certainly feel that I was put on this earth to be a mother, but I want to feel that I’m bringing my child into a world that I can feel happy with and proud of. There are people that have inspired me and then left our world and I want them to know that wherever they are they made that difference. Laura Blomeley, Shirleen Dawes and Bev Davies were all people that touched many lives but were taken too soon. They may be gone but their lives had meaning to me and so many others. So here’s to living every day to the best of our capabilities and trying to touch others’ lives in a positive way. Positivity is the way forward!

Apologies for how long and rambling this has been, I guess it just goes to show all the millions of thoughts that flow through my mind on a daily basis. My dad says if I see injustice I do something about it, I think that on this day this is the only thing I could think to do to address some of the injustice I’ve seen.

PS Mark says my meaning of life is him! xxx