30 Day Blog Challenge: Yellow

Chances are if you follow me on instagram, if you are around me in person, you’ve seen me in yellow.

Yellow isn’t even my favourite colour.

Nope.

That honour belongs to the colour purple.

If you see me regularly you’ll see that ocean and sea colours are what I’m often found dressing myself in. Blues, teals, turquoises…

Yellow and gold became a thing when I realised that so few people knew about the lack of funding for childhood cancer research. So a few years ago, I started making a point of wearing yellow and gold every day of Childhood Cancer Awareness Month. It’s not seasonal for Autumn, and it’s hard to find clothing items in these colours that are Scottish weather appropriate, but actually it makes it more of a talking point.

People ask.

I tell.

They are often shocked.

They share.

Awareness spreads.

It is now March.

Women’s History month.

But also the month of Endometriosis awareness.

The colour for that is yellow too.

I’ve still never had a diagnosis for all the problems that I’ve experienced as a woman. Over the years I hear conflicting opinions and knowledge from doctors – even ones who are specialists in gynaecology.

This morning a video of an episode of Australian Story popped up several times on my social media feeds about Emma Watkins (the yellow wiggle) who has Stage 4 endometriosis. Her fellow male wiggles talked about how they worried for her, and almost called ambulances. She talked about how she just thought it was just some bad period pain.

And immediately I was transported back of the first year I sang at this monthly youth event when my symptoms were at their very worst. I would have pain relief patches all over my body under my clothes. I would be in so much pain that I would come off stage, go to the bathroom and collapse on the floor. I would pop more paracetamol and aspirin. I would adjust the patches. I would make cooling compresses out of paper towels. I would brace myself and go back out there. Then for days I’d be exhausted.

Pain is exhausting.

Bleeding is exhausting.

It takes an average of 7-8 years for a woman in the UK to get diagnosed, and it affects at least 1 in 10 women.

And that hasn’t changed much in the last decade.

We don’t know the cause.

Treatment options are limited.

And there isn’t an awful lot of research funding put into it.

You can help change that by speaking to your MP or MSP, getting involved with Endometriosis UK or simply spreading awareness.

A TMI warning comes with this post…

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10 years ago I summoned the courage to go on an international flight again (and 2 domestic ones) to travel to Durban, South Africa to visit, learn from and help out with a project being organised by the incredible community centre Seed of Hope.

However, 10 years ago I was also regularly struggling with the pain of what a doctor suspected was endometriosis. The downside of living in a country where you only get healthcare that is absolutely needed is that because I was single, not planning on having children in the near future or at death’s door it was decided that surgery to confirm this would not be done, and instead they would treat the symptoms with medication and not confirm the cause. Doctors had prescribed many things over the years from painkillers that made my nosebleed, painkillers that made me sick to vitamin tablets to various hormone pills that were meant to regulate and lessen but rather made me suicidal, depressed, enraged and in one case brought on an onset of dyspraxia. My friend may still remember the night I called her crying because I could no longer had the coordination to pick up, hold or peel a banana. To her credit, she responded by coming round to my flat, asking if I still wanted a banana, taking the bananas off me and peeling it for me. Then she watched as I – the one who friends had made a mission to find a film that would make me cry (nope, not even The Notebook worked) – sobbed at an episode of Friends because Chandler was talking to his bunny slippers.

Other friends witnessed the effects of Laurie on that particular drug and bless them, only after I came off it did they inform me how scary it was to watch how it changed me. We all agreed I should never take it ever again. And it was why when a GP handed me a prescription a year later with a brand that seemed suspiciously similar that I questioned him on it ‘Is this xxxx?’ and he categorically told me it was not, that the mistrusting part of me went to my Junior Doctor friend’s flat and asked to look through her copy of the BNF to check. I was right. He was either ignorant or blatantly lied to his patient because he thought he knew better and didn’t want to discuss with me why he thought I was wrong to ask never to be given that drug again.

I wish I’d made a complaint, but instead chose to ask the receptionist not to give me appointments with that particular doctor.

Part of the problem is that women’s health is under researched, under resourced and people aren’t very knowledgable about it. Not even doctors who deal with it on a daily basis.

Over the years, I’ve relied on online community for advice and my own gut instincts to refuse treatments or ask for others. I’ve also like many women, given up on advocating myself until I’ve got to a point where friends and family have begged me to try again because they can’t bear to watch me in pain any longer. It takes a lot of emotional energy to keep fighting your corner, and when most of your life is trying to continue as normal and pretend you’re fine your energy tank gets depleted pretty quickly.

So for 10 years I got injections. Injections that in the last 2 years I began to question getting. That my nurses thought it was strange I was still getting without any doctor follow up. They just churned out prescriptions without even seeing me in person. Eventually because I was concerned about some changes in my body, plus the return of the pain on a more regular basis, I asked to an appointment with my GP. The end result was them saying to keep getting those injections until I turned 40. Then we would scan my bones to see if there was any long-term damage.

As the months went on, I just had that niggling discomfort with what the GP had said. The things my body has been doing I’m sure aren’t normal for a 34 year old. And I felt they had just been glossed over.

And so this Christmas I made a decision. A scary one. I wouldn’t go back to the nurse for another injection.

It means at some point, my body should bleed again. And I’m willing to take that risk of suffering all that used to come with that. Pain. Anaemia. Because the hair loss, the weight gain, the pain in my joints, he twisting and stabbing in my lower abdomen bothers me. It is surely not normal for hair loss to begin at 26.

There is a part of me hoping that the weight gained will be lost, the hair lost will start to grow back and that perhaps all the depression and anxiety will level out because perhaps the major wobbles I’ve had in the last few years are actually due to hormone imbalance caused by these injections like the pills they gave me before.

Or maybe I’ll discover that life on injections is preferable than one without them.

Who knows. All I know is that even though I’m nervous as I wait to see what my body will do, I’m glad for it to be MY choice.

The one where I get angry about endometriosis research…

*A Pre-warning, that this blog post contains details that may be considered as ‘TMI’ or ‘oversharing’. If menstruation makes you uncomfortable…don’t read on!*

I don’t talk about this on my blog much anymore, mostly because until very recently this illness that I unofficially got diagnosed with at 22 has not affected my life as much as it once did, thanks to the wonderful NHS, the availability of a contraceptive treatment that also works to control my symptoms in the form of injections into my butt cheek/hip area every 12 weeks. But the other week, this article popped up on my twitter feed, and I felt just a tad enraged about it.
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Why did it make me angry you might ask? Well. First of all the fact that hardly any research money goes into endometriosis. I’m one of the lucky ones. At 22 my life was miserable. I ended up in A&E more than once because of the horrific pain I was in for about 1-2 weeks of every month. I never took myself to A&E…it was usually a friend, or one time a doctor who was driving past when I was collapsed on the pavement dizzy and in pain. I imagine this is because watching their friend wretch (and then start panicking because she has a phobia about being and seeing people be sick) because they are in so much pain while also passing out because they are in so much pain (sometimes hitting their head off bathroom furniture in the process) was a little bit scary to watch. Especially when you are a young adult and not entirely sure what to do because all of a sudden your parents aren’t there to call on. My friends made me go to GPs multiple times and watched as they came up with the most ridiculous answers to the problems I was facing.

Part of the issue was that doctors didn’t know about endometriosis, how to diagnose it and how to properly treat it. Add the fact that at 18 I’d had quite a radical change in my religious beliefs and had chosen to not engage in a particular activity ever again unless I decided to marry someone. Most doctors I met didn’t see the point in checking for a diagnosis or investigating further unless I was at a point of deciding to start a family.

There was no support whatsoever. It was just let’s keep trying every medication we can think of to deal with your symptoms and hope you don’t find out your totally infertile later.

There is little research into treatments, what causes it or cures.

And oh what a shame for these poor men! What about how it effects OUR lives? Or are we still under this weird assumption that women don’t like doing that activity (I’m not a prude, if we were in person I’d say the word, but know if I type it all sorts of issues are created in terms of search engines, spam and people not being able to access this blog).

There is so little funding for women’s health research, so why is THAT a priority?

And then the photo chosen.

How is THAT representative of a woman suffering from endometriosis?

First of all…one hot water bottle ain’t going to do it. I would have them on my front, my back even between my legs because the pain was basically from the inside out and down (if you catch my drift).

Second of all…I would not be that relaxed. If you had a picture of me in the foetal position lying on the floor screaming and crying…sure. Perhaps holding onto a toilet bowl. Basically writhing in pain trying to find anything that makes the pain bearable, and praying to anyone to be able to like…stand, sit or whatever.

Third of all…I would not be lying there in a white vest and pants. Dark clothes, anything comfy and tatty because chances are it’s going to have to be soaked in warm water and be treated with any remedy I’ve heard of that removes blood from clothing before I’m able to put it in a washing machine if I have a chance of being able to wear it again. I might even be wearing two pairs of pants (something my friend used to do – both pairs with a sanitary pad that was meant for ‘night’ use). Even then we could still wake up soaked with blood stained pyjamas and bed sheets…so we would sleep on top of towels.

Fourth of all…I’m going to be a lot more gross and sweaty. Because all those heat packs to try and deal with the pain are making me way too hot and I’m probably wearing a cold wet flannel on my head and arms to compensate….not to mention the pills I’ll be surrounded by and taking maximum doses of every hour I’m safely allowed to.

That’s the reality.

And as I said, I’m one of the lucky ones. At 25 they put me on injections which stopped my menstrual cycle and for the most part that has worked. I put on 2 stone in weight (and thankfully lost 1/2 stone of that eventually) and my hair started falling out and going grey but it was a small price to pay for no longer being in pain and spending a fortune on tampons and sanitary towels which I needed 40% of the month at times. Yes, in the last few months it would seem that I’m having a return of some symptoms and now I’m on a new medication to see if that works before they go down a surgical route. But if you go on the Endometriosis UK forum, there are women who had far worse and symptoms 24/7. I could tell you so many stories of doctors who have been clueless and unhelpful…but some of that is not really their fault. It’s because women’s health is not studied or seen as a priority for research and treatment. You can bet your ass if men had to deal with a uterus and ovaries things would be different.

Ok.

Rant over.

(For now).

 

The one where I wonder if there are miracles…

The other weekend I had a Sunday off. I thought about going to church, and then I realised it was Mother’s Day. I’ve spoken before about why I don’t celebrate it, and it broke my heart to see people on social media dealing with the pressure of declaring their Mum ‘the best in the world’ when they’ve been treated poorly by their mother. I also saw again friends who are in churches giving out things to all the Mums, and making a big deal about this fake hallmark holiday. Before you think I’m a totally horrible person, I did take my Mum to see Beauty and the Beast the night before. I decided instead to go out into the sunshine with my camera. I ended up wandering down the Water of Leith to the National Gallery of Modern Art. And was struck by this sculpture (for want of a better term?) and the fact that you can see churches behind it in the background.IMG_1698

The church you can see on the right, is (I think) the cathedral where every Autumn they hold a service for people who have faced pregnancy, stillbirth and infant loss. It really sucks to be part of that community on Mother’s Day in a church. I’ve spoken before about the insensitive comments I faced when I first started going to the hospital for tests and scans from my fellow Christians. I was told that the only reason I was so ill was due to my lack of faith. I was also told that despite doctors telling me I would struggle to have my own children, God would give them if I prayed enough.

Eh, what?

If only it were that simple. I had a friend who went to every prayer ministry you can imagine and they still died of cancer. I have a friend who had her sixth miscarriage this last year. I have friends that got told they wouldn’t be able to have children and later in life had a ‘surprise’ pregnancy. I know a girl who died of cancer. I know a girl who got given 6 months to live with her cancer and is still here 3 years later. 12 years ago my Dad almost died and surgeons thought they’d have to remove a huge section of his bowel – only for a few days later to find it all better with no knowledge of how that happened. 12 years ago my grandmother woke up suddenly paralysed, and died 3 weeks later and doctors had no idea how or why until they had done endless tests and an autopsy to discover she had a rare form of lymphoma.

There is no rhyme or reason to why one person lives and another dies. There is no rhyme or reason to why one pregnancy ends in with a healthy baby, one ends with a sick baby and another ends in miscarriage.

Do miracles happen? I think sometimes they do. I don’t know that we have any control over when, where or why.

Yes, it makes me sad to think I’ll likely never be part of the parenting club. I never dreamed about getting married, but I did dream about being pregnant and giving birth to babies. But I also remember the day the doctor talked to me about it, and being astounded by the peace I felt. And now that I’ve spent more time with friends who are parents I think maybe God knows exactly what He’s doing…quite frankly kids seem to throw up waaaay more than they did in the 80s and 90s and I quite like my independence. I also like sleep and to eat my tea while it’s still hot.

So let’s stop putting the pressure and the judgement on people who haven’t got the miracle they hoped for. Let’s be real and recognise when life sucks, and when we’ve had the chance to rage and cry about it…find out the good that can be brought out of that crappy situation.

And if we do get a miracle…let’s be humble and remember it likely had nothing to do with us. Be grateful, and sensitive to others who didn’t get theirs.

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