Chronic pain

My stomach is swollen and scolded red,

They still think the pain is all in my head.

No hot water bottle is hot enough,

And now my skin is way too tough.

The scars staring back at me always say,

‘There’s nothing we can do, so go away.’.

The doctors gave up so I should too,

What else could I possibly do.

My pelvis feels like it’s been crushed with an axe,

It can’t be fixed with just heat or ice packs.

It feels like I’ve been stabbed up through my cervix,

And my ovaries have been filled with heavy bricks.

Twisting and pinching from the inside,

There is absolutely no where to run and hide.

My whole body aches and I’m so tired too,

I’d love to say this only happens to a few.

Women are suffering every single day,

Because healthcare was designed to keep us at bay.

3 years of psychotherapy

I’m so incredibly lucky to have been able to have over 3 years with my therapist. He has been there for probably one of the most transformative times in my life and has had such a huge impact on who I am today.

I decided to leave therapy because I needed to try and live in the present without constantly bringing up the past. It was quite naïve of me to think that that would be possible. My therapist had become a comfort blanket and I always found myself “waiting” for the next week. I felt like it was time to finally stand on my own two feet without needing to rely on him to dig me out of whatever emotional black hole I had descended into.

I am cheating a little because I still have my CBT therapist, although she has to finish her work with me soon. I’m really scared, to finally be on my own. It is different, with my psychotherapist I knew that I could always phone him if I needed help (although I never did). With my psychologist it is not the same.

I spent about 23 years managing my mental illness alone, (apart from the odd antidepressant prescribed by a GP), the waiting lists in the UK were so long, no doctors ever bothered to put me on them. I did pay for private therapy but as I was not working the guilt of using my husbands money to pay for it was too much and I stopped. I could not believe that after landing in Sweden I was given this help just like that, I kept trying to end the therapy because I felt so guilty having this commodity I knew so many people desperately needed. “In the UK you get about 8 sessions and that’s it – you’re done!” I would say. I felt completely selfish and a burden to be taking up his time.

The progress I made with him was astonishing and I can’t even recognize the person I was 3 years ago, but I still have a very long way to go. I wish it was simple and fixable instead of complex and a complete mess. I don’t think I will ever be better but I’m grateful that the changes in my life we made have led to me being a better mother, a stronger person and finally being able to make my dream of teaching come true.

Medical trauma

Something I had never really heard of until I spoke to others in the chronic illness community, was medical trauma – defined as a set of psychological and physiological responses to pain, injury, serious illness, medical procedures and frightening treatment experiences.

Photo by Miguel u00c1. Padriu00f1u00e1n on Pexels.com

Since my teens I’ve avoided medical treatment as best as I could, I couldn’t face the humiliation or apathy I usually endured. I honestly thought I was just too sensitive and that it was normal, other people just coped with it better than I did.

Since a young teen I went to the doctors with severe abdominal pain. Usually around my appendix. Always to be told I was just a “worrier”, it was just IBS and that I should try to relax.

I went about painful periods, was put on the pill and that was that. I mentioned my concern over my irregularity and something not being right, I was told to stop worrying about it.

As an older teen I went to the doctor about something – I can’t even remember what, but I asked him a question about the pill and he said he could only help me with one thing, I started crying – it wasn’t easy for me to get an appointment or be taken there and I felt embarrassed. He asked in a panic, it felt completely from nowhere “do you hurt yourself? are you suicidal?” I left the room in a rush, completely dazed, tears running down my cheeks. I avoided the doctors for a long time.

A few years later I was back to ask about my periods and fertility, the pain was now very prolonged throughout the month and I was worried. I was told to stop worrying and that they wouldn’t look into anything until I tried (and failed) to concieve.

I went to the doctors about depression, they tried to give me antidepressants but I was too scared. They contacted the school nurse. She sent me to the school therapist. I went once, she tried to get me (a 17 year old) to draw a picture of how I felt. She tried to get me to sign a piece of paper saying I didn’t hurt myself or ever feel suicidal. I left.

My first year in university I went to the doctors about my depression, they put me on antidepressants. I became a zombie, I cried hysterically or went completely numb. I went to the doctor and begged for help. She didn’t even look at me from her screen, she just told me I needed to keep taking it for longer.

The university offered me help – for my IBS. Taking into consideration high absence/need to leave to use the bathroom etc. but they needed a doctor letter. I went to the doctor and he refused – said he would not write me one as I just wanted the benefits.

A few years later, I go to the doctor with my usual concerns around fertility, the debilitating periods which had me blacking out and the pain during sex. This time the doctor actually listened, he turned to me, and said “you have been having pain during sex, how long? you do realize this could be cancer!” I was not prepared for his scolding and completely broke down. He told me that they could not even check me for cervical cancer because I was too young so they just had “a look” at my cervix. He took a blood test, but it was Friday and the bloods had already gone so he got me to drive it to the hospital myself.

Fertility test after fertility test… it took a long time and we were put on a waiting list for over a year. The final test before the consultant: HSG. It was incredibly painful, I tear up when I think about it, nearly 5 years later.

Luckily I got my wish – I was pregnant. It wasn’t all I had dreamed of though as I got HG, I felt nauseas 24/7. I could not stand up or walk without being sick. I could not keep down food. I managed to sip drinks, but I could not leave the house for months, the only time I left was for midwife appointments. Not one of the several midwifes I saw listened or took seriously my sickness, even when I was sick in front of them. I was told to eat a ginger biscuit. It was once, one of my last appointments before moving to Sweden the midwife noticed my dried up lips, my thinness and fatigue and told me I must go to hospital if I’m not able to keep down liquids.

I tried to stop taking my antidepressants during pregnancy, but I had a huge relapse and I needed them. I had been told they were one of the safest to take during pregnancy. My doctor tried to refuse me them and then said “you do realize the risk you are putting your baby in!” I replied that there would be no baby, or mother if I didn’t receive help.

Birth was a whole other story. I still get flashbacks and panic attacks. To sum it up: 21 days of early labour – 14 hours in active and then 5 days in hospital worrying because they said they were keeping me there because my baby was small – I found out later it was because they were worried about postnatal depression.

A year after birth, the pain is back, finally diagnosed with endometriosis, given an IUD. Pain still there. Laparoscopy – low and behold, there is an adhesion in my abdomen – in the place I have been worried about for all of these years. No endo though, so I’m told it might be microscopic, there is nothing they can do, discharged.

The pain in my legs got worse, sciatic pain the whole way down from my back, somedays I can’t walk, my knee gives way, I fall and the front of my foot stops working so I have to drag it along. I asked for crutches or something to use on days like that, and the doctor laughed in my face.

I went to the doctor about my chest pains, of course it is just my anxiety and he tells me I’m a hypochondriac. I got a recommendation for a new doctor and I can’t believe my luck, he listened, he gave suggestions and he is actually looking into my symptoms. Even if I am a hypochondriac, they get sick too.

Why?

Everything feels frivolous, pointless and bad,

I can’t stop reading the news, its making me sad.

I just cant understand why we need so much hate?

Is this really the history we must replicate?

With Covid and the climate some live in constant fear,

What we don’t need on top is this tyrants idea.

They tell you to look for the people helping in these times,

So much of the focus is on those committing crimes.

And although there is plenty of good to see,

I can’t help but question what the point can be?

It’s not useful or helpful I apologize,

But I just cant take in any more with my eyes.

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CBT

Despite living with quite terrible mental illness for years, it actually took my chronic pain to get me in to see a CBT therapist. After failing to do anything about my suspected endometriosis and with no ability to give me any other help, I was passed on to a rehab clinic which I’m super grateful for (although it did take a while to get over the fact that there was no hope left).

I got a doctor, a physiotherapist and a psychologist who worked as a team – taking a holistic view at the chronic pain and fatigue. Unfortunately for them I am not a quick fix and way more complicated than usual so I’ve now been there for way longer than I’m supposed to be and soon my time will be completely up.

I feel incredibly lucky to have had this opportunity at help and wanted to share some of the golden nuggets of wisdom I’ve learnt. Although, disclaimer, I might have got the wrong end of all the sticks so talk to your provider before you listen to me!

Panic attacks. Had them for years, debilitating, couldn’t even leave the house for years because of fear of them. Fixed. (Not forever, I do lapse when severely triggered, but wow, I went two weeks without one which felt like a complete and utter miracle). How? Sit through it, don’t try and stop it. Yes it feels like torture, it feels like you can’t breathe, it feels like your heart is going to implode and you are covered in sweat. Don’t touch your heart, don’t practice breathing, you CAN breathe, your heart will calm down, but touching it, telling yourself you need to make yourself breathe, it just gives your brain more evidence that something IS wrong and makes your anxiety worse. If you don’t react to your symptoms your body does not take it as seriously.

I have health anxiety and I constantly check my heart, it is one of my compulsions. Somehow I figure I need to check it is still beating. I used to have a Fitbit, you know, get to 10,000 steps a day and feel amazing. But it’s gone now, banished. I was told I can’t wear it anymore. Obsessed with the heart rate function. It takes A LOT of strength to not do my normal checks, and I am sad that I don’t think I’ll ever be able to wear my Fitbit again but WOW my health anxiety is so much better since I stopped those two things. I’m not allowed to google symptoms either but that habit is proving harder to kick.

Go outside. Even if you are in your PJs. Yes, that is ok! That was actually one of my first “homework” tasks – to take the dogs out in my pajamas. Being chronically ill means that sometimes just getting dressed takes way too many spoons – should I miss out on fresh air and seeing my dogs enjoy themselves? No! So go out in your pajamas.

Make friends – go out for coffee, go out for food, meet up with friends. Another homework I put off for months. I know right? Not exactly punishing task, but for me it was too much. I used up all of my spoons on work or looking after my daughter and otherwise I just wanted to lie in bed. Here is the complication – a day out can be great but it takes away spoons from the next day, committing to going out for a walk or a meal or a day out is committing to more pain and fatigue in the coming days.

I’ve been completely blessed to meet such a kind, funny and understanding psychologist, the downside to this is that whenever I am reminded that our time will be up soon I completely break down. She has shown me so many things that are life changing and I know that she could help me so much more and losing her feels like losing hope. She is also just so fun and just someone I know I would get along with so well in “real life” and I just wish we were friends – it doesn’t help that whenever I think “I wish we could be friends” my brain replies “well you can’t because you’re too crazy!”. Feeling embarrassed and pathetic about how upset I was at losing her my friend said “It’s normal to be sad, imagine going for fika with someone and talking to them about the most intricate things in your life every week and all of a sudden it’s over and they never speak to you again” of course it hurts.

2 days of crying, at rock bottom, broken hearted, lost control. I wrote this, to try and pick myself up, I don’t want to let her down.

The law of attraction can be toxic

For some, the law of attraction is a very motivating and exciting factor in getting to where they want to be, in their career, personal or social life. When I was trying to conceive, after years of trying I was given ‘the secret’ on dvd and told to hang up a small item of baby clothing in my room to ‘put my wishes out into the universe’. What you ask for, you will get, I was told.

But for someone with OCD this can be a dangerous affirmation that our intrusive thoughts will indeed come true. The more you try and stop intrusive thoughts and images the more likely you are to get them, and the more often. And the more you have them, the more likely it will be, following the logic of the law of attraction that they will come true. Compulsions become even more important in trying to counteract this.

I have many different intrusive thoughts, but I will give a few examples.

  • When my heart beats fast my health anxiety insists that it is a heart attack. My compulsions are to body check, feel my heartbeat and pulse, check my temperature with my hand on my forehead and cheeks, try to cool myself down, sip water and seek reassurance. According to the law of attraction, I am attracting the event of a heart attack.
  • When I travel by car I am convinced we will crash and compulsions include praying, begging for a safe journey repeatedly and opening and closing my jaw in line with the road markings. According to the law of attraction, I am attracting a car accident.
  • When I am apart from my husband or daughter I have intrusive thoughts and images about them getting hurt or never returning. Compulsions include reassurance by text, self reassurance, rumination, avoidance. This is the worst one, because if my worry about this happening attracts it happening, like the secret suggests, it will all be my fault if something happens.

If the law of attraction works for you with no adverse effects, that’s great. But it’s important to realise it’s not going to help everyone.

Louise x

Credit: jplenio

2022

I know some people think that New Years resolutions are silly and they only last a short time before being forgotten, and although I’m inclined to agree, it does not stop me from making them nonetheless.

It’s the one time of year I feel optimistic and excited for the future. Even when I’m in a bad place, I always get comfort from imagining that the next year will be better.

I tend to write my resolutions as more of a bucket list of what I want to complete or achieve in the next year, rather than needing to change my behaviors, I think this is a more attainable thing.

I suppose you can see the need for change behind the wishes for example: developing mindfulness skills, sticking to a schedule which includes self care, and keeping organized are all behaviors related to mental wellbeing. Writing letters, deleting social media and nurturing important relationships are all behaviors related to socializing.

So perhaps my method is no different at all.

Ever since a young age I couldn’t imagine making it through another year, so I have no idea why I have always been optimistic in the last few days of the year.

Whether you celebrate the new year or not, I wish you joy and comfort in the coming months.

Louise x

The hypochondriac mum

Although my anxiety comes in many forms, social, agoraphobia, panic attacks… health anxiety has to be my worst.

If you’ve read my blog before or followed me on Facebook or Instagram you’ve probably seen me talk about this before.

Ever since I was a child I’ve been absolutely terrified of being ill. As soon as a classmate would mention they felt sick I would feel sick too. With every illness I would convince myself that I was going to die.

It only got worse as I got older and found google. Now I ban myself from searching things and I get my husband to read the side effect label on my medicines because otherwise I’ll give myself the symptoms!

I have been much better recently, since I began mindfulness and CBT I can look at the situation more rationally.

I had one scary moment since becoming a mum, a couple of weeks after giving birth I had a massive bleed. I rushed to hospital but it was all fine. But I got there in floods of tears and the midwife had to reassure me I wasn’t dying.

For days after that I was constantly on edge and had lots of panic attacks replaying it over.

I didn’t even contemplate what it would be like to have health anxiety and also be a mum. It never occurred to me that however scared I had been for myself it was about to get so much worse.

The panic attacks with every little spit up, every cry, every sniffle.

Luckily I’m receiving great help at the moment and it’s getting much better.

If you ever feel like this make sure you talk to someone.

Louise x

Is it time to give up?

I think I’m finally reaching breaking point. I used to have the slightest bit of hope that one day someone would finally diagnose me and care for me and that I could live at least a semi pain free life.

After my laparoscopy I got a letter saying that they did not find endometriosis. A one sentence letter. No follow up, no discussion, no nothing and now I am back at square one.

Some people might think that I should be grateful and happy but as I’m laid in bed for the third day crying with the unbearable pain and I don’t feel like I can carry on for much longer, I don’t feel that lucky.

I have to be honest, I am still 100% convinced I have endometriosis. I have ALL of the symptoms and even had an adhesion they had to burn away, with no prior surgery or anything it’s bizarre. According to this journal, “positive histology confirms the diagnosis of endometriosis; negative histology does not exclude it”.

I’ve read so many studies and papers on it and it is completely possible to miss it, it can be microscopic, in another place they didn’t explore and although they took samples to test histology, they took those from the “common areas” and no one had told me where so I can’t even see if it correlates with my pain. It can also be that due to my age the lesions are clear or pink and not visible to someone who is not an expert in endometriosis.

There is also the fact that this journal says that you should not use hormonal contraception 3 months before laparoscopy or it can give false results and they took mine out on the day of the operation.

The reason I am so disappointed in not receiving a diagnosis is that I now have to deal with the common (but always) heartbreaking phenomenon of both doctors, family, friends and strangers believing it is “all in your head”. After 13 years of suffering and asking doctors for help, the first time some people actually believed it was bad was when I told them I had to have an operation. So I’m dreading their response when they find out the results were negative – “amazing, you’re fine then, you must be so happy”.

One man I spoke to after my operation, asked what it was for, I replied “endometriosis”, his response was “oh that’s fine then, you’re lucky it’s not something serious, I know people that have had cancer”.

I just nodded along because I was too exhausted to say anything, but what I wanted to say was “you do know that it takes around 7.5 years to be diagnosed with this? It can mean infertility, chronic pain, not to mention all of the other devastating affects. Women are actually ending their lives due to the pain and lack of support”.

Finding answers

I’m laid in bed for the sixth day,

I’m still too tired so here I lay.

Starting at the ceiling, feeling alone

The only company I have is my phone

No one calls, no one texts

I feel so desperate each time I check

I can hear my daughter playing in the other room,

I hope I can play with her really soon.

The doctors still don’t have a diagnosis

So I still don’t know the prognosis

They said my intestine adhesed to my abdominal wall

The thought of which makes me shrink until I’m small.

For years and years I’ve been asking for help,

Every time they muttered “it’s IBS”, I’d whelp.

The girl who cried wolf, was always my fear,

I’ve said it too much and it’s like now they don’t hear.

“It’s not the same, as my endometriosis pain,”

But everything I said was said in vain.

“It feels like someone is tweeze-ring my appendix,

And the nagging pain is relentless.”

“I’m not concerned, so you don’t need to worry,

Call back in a week, there is no hurry”.

It had already been years, so what was the point,

It just blended in with the pain in each joint.

Now I find out a blockage could have been fatal,

But my cries for help were treated as fable.

Will they listen now? If it happens again?

Will they now care when I’m in pain?

Maybe they’ll read this when I’m already dead,

Would they still say it’s all in my head?