Tuesday, 2 July 2019

The power of gratitude and fighting back

I'm still here, still fighting and much happier.

My antidepressants are working and I'm really rather content. Grateful that i got through the dark times, grateful for the support received.

On reflection i realised why things got bad. I burnt myself out. I had hospital appointments most days so wasn't getting adequate rest. I was trying to be 'normal '. Well if other people can do it, so can i. The reality is I cannot do it. I live a quiet life for a reason and that is so i can manage my condition and use what little energy i have on things i enjoy.

Now this brings me onto my next reflection. Gratitude.

Last Friday i attended a gratitude workshop. Its run by the council for mental health. I wasn't sure what to expect but it really changed my perception on life. I've been dragging myself through the days, hoping for something better tomorrow, without appreciating what i have in this moment. 

So here is a list of things i am grateful for :

1. I'm incredibly grateful for antidepressants being made. There is no shame to admit it. They have given me a life when i was in the midst of despair and not seeing a way out.

2. I'm grateful to the changingminds service on the nhs who helped me with cbt.

3. i'm hugely grateful for people who have donated or shared my gofundme me page. I cry every time at the incredible generosity  of people. Many i have never met. So thankyou from the bottom of my heart

4. I'm grateful i could hear the birds singing and see the sun shining 

5. I'm grateful that despite living a slower life, i get to watch the plants grow, people smile, the clouds in the sky and my cat playing in the garden.

These are just a few things i am grateful for. What are you grateful for today ?

Before i go i thought I would share a picture of mia helping me plant seeds, or rather just wanting fuss 😂 

I hope you all have a lovely day x

Monday, 17 June 2019

The spiral of hell

My mood improved for a few weeks after restarting my antidepressants. Sadly it seems to be spiralling downwards again. I've decided to up the dose to what i was on before I stopped taking them. Praying it helps.

I'm just so so tired. Tired of living. Tired of the chronic pain. Tired of fighting. I drag myself through everyday hoping tomorrow will be better. That hope never arrives....

Tuesday, 21 May 2019

Can I really put myself out there

That is the question I ask myself. Can I really put myself out there? The side of me that I desperately try to hide so that I'm not judged, or even worse, pitied.

Let me elaborate. Since i updated you on my last post, i have been feeling better everyday. I'm ready to start living life again but there is only one problem. My electric wheelchair decided to die. Rip. Without it i'm abit stuck. Unfortunately my bungalow is situated on a steep incline, so i cannot push my manual wheelchair up or down, i can't even push my wheelchair very far without help. This means I'm now back to relying more on my carers and friends just to even go to the shop.

Sadly I cannot afford to replace my electric wheelchair , so after much consideration i set up a gofundmepage. Now i'm quite a private person (ok you might not think it according to my blog posts)  but in real life I don't actually talk in depth about how my illness affects me. I always want to be treated as a person who just happens to be sitting down.

By not talking about it much ,it gives me the illusion that all is ok and I'm relatively normal. However it has its drawbacks. People assume your ok, you can cope. You eventually burn yourself out try to live up to this false reality. So where do you draw the line from people understanding your limitations to wanting to appear normal.

This is the dilemma i have at the moment. To enable me to fundraise for my page, i have to put myself out there. The raw, vulnerable me. The me that had hopes and dreams before my conditions took them away and I'm terrified. Terrified of peoples reactions, 'what will they think of me', what if they think I don't deserve a new chair', 'will the whole village be gossiping about me', 'will i be scrutinised for every movement i make'.

Although my original hopes and dreams are a distant memory, i long to make new ones, to meet to people, to continue my journey. Just in a different way and hopefully with a new wheelchair i can do just that x


Monday, 20 May 2019


I didn't realise how long it's been since I last posted. I think i got worried that I didn't have anything interesting to say or if people even read my blog. Anyway today I'm going to cover a topic that is affecting my daily life at the moment. Mental health.

Disclaimer: This post discusses suicidal tendencies, so please don't read if easily distressed.

I've suffered with anxiety and depression most of my life and was first prescribed antidepressants at 17. I was going through a difficult time at college and then struggled with full time employment. My colleagues thought I was lazy and miserable and I just couldn't keep up. Little did I know I had my genetic condition Ehlers Danlos Syndrome then but I got diagnosed late. Life might have been different otherwise. It took a few years of dark times to find the right antidepressants. After that I was relatively stable, just having a few blips along the way like everybody does.

Fast forward 14 years to now. It's been six months of hell that I hope I never have to go through again. It started with a uti or three, trips to a and e for other conditions and a downwards spiral ensued. It seems the meds I was on were interfering with my antidepressants. My life crumbled around me and I had to move in with my parents as I couldn't cope at home. Each day was filled with sheer panic. Like a brick came down in front of me and I couldn't break it down. I couldn't get in the shower, my mind would panic, I couldn't tidy the house and I couldn't go outside. Things I loved to do I know longer could. No more watching a tv programme, read a book, craft or go on the computer. 

Anxiety is like your body is running terrified from a bear. Your brain doesn't shut down to concentrate, your body doesn't relax to sleep. Everyday I wished I was dead. Every night I wished I didn't wake up in the morning. I had alot of terrible thoughts going through my head on how to end my life. 

I decided to come of my antidepressants for a few weeks because I didn't understand why my mental health was so bad, why stay on them if they weren't working. I soon realised that they did work my moods became even more erratic, so i went back on them. Its been over a week now and I'm already feeling better. Bit by bit I'm piecing my life back together. I have to carry on. I have to climb back up the ladder. With the help of my therapist I am learning to cope. I still have days of panic and I've learned to focus on my breathing, or count to ten. This stops my mind from going into overdrive. 

The other day I had a pile of clothes to sort. My brain panicked and said I just can't do it, so I left it. This created a vicious cycle of anxiety all day, worrying that I can't do it. I eventually did do it and I got so engrossed in the task that i tidied my whole bedroom. I've also started to exercise again (yes you can exercise in a wheelchair) something that used to fill me with joy but i began to dread it. Just venturing out into the garden and listening to the birds relaxes me. I also write down one task a day to do, even if it's just putting some books away. It was hard focusing on it at first but by breaking down tasks I don't feel so overwhelmed. Also by writing the tasks down ,I can see how much i have achieved at the end of the week.

Slowly hour by hour i make it through another day and for that i am proud x 

Friday, 24 August 2018

Homemade Chutney and recipe link

Today I decided to make some chutney with my carer. I've never been brave enough before but thought why not. I had loads of green tomatoes in the garden and felt quite sad picking them all but at least they got used. It made a lovely distraction from health stuff. I was in hospital this week with dehydration but the doctors still can't help me pain wise. I've begged and begged. Just got to carry on.

Anyway here is the recipe for the chutney if you want to have a go yourself. 



Enjoy x 

Sunday, 5 August 2018

Baking day and recipe link

Today I had abit more energy so I thought I would do some baking. Unfortunately I don't eat any of the things I bake because of my gastroparesis and newly diagnosed gastritis so it all goes to my parents.

Here's the Victoria sponge cake I made. The recipe I use is from http://shewhobakes.co.uk/recipes/vanilla-cupcakes/ it's originally for cupcakes but I decided to make one big cake. It turns out really well and so so moist. My family love it. It's now my go to recipe.

Next up was home made bread. Because I don't have much strength in my hands, I use my kenwood mixer with dough hook.I searched everywhere online for a decent recipe and found this one. I just used different flour.
In the photo is also my homegrown veg. I adore watching it grow. Tastes much better than shop brought.

I hope these links are of some use and you make some wonderful cakes

Love hayley x 

Wednesday, 30 May 2018

Gastroparesis and me

Imagine never being able to eat a meal. Those chips you love or the pizza you used to look forward to are now a distant memory. You suffer severe nausea with one bite of food, it’s agony when it hits your stomach. You are so full up after one mouthful that you feel you’ve eaten a three course dinner. You can no longer drink a whole glass of water. Never again being able to have a meal out or enjoy drinks with friends.

Gastroparesis according to the nhs website - Gastroparesis is a long-term (chronic) condition where the stomach can't empty itself in the normal way. Food passes through the stomach more slowly than usual.

It's thought to be the result of a problem with the nerves and muscles controlling the emptying of the stomach. 
If these nerves are damaged, the muscles of your stomach may not work properly and the movement of food can slow down.

My journey with gastroparesis began about 4 years ago. Although I had symptoms on and off for a few years before. I think it was about October time and I ate a huge biscuit in a cafe in a supermarket. Straight away I was in agony  in my stomach and I struggled to eat from that day on. It took me about 15 months to get a diagnosis in London. Mine is caused by Ehlers Danlos  syndrome.I’d tried every medication there was and my weight plummeted. In July 2015 I received my first feeding tube. Before I got it I had to go on Tpn ( a central line placed in the neck delivery nutrients into the blood) as apparently I was to weak to survive the operation. This is me the day of my surgery. Paper knickers make a great hat.

I was ok for about two months on tube feeds but then it started to become really painful. Found out after being sent to see psychologists that it was caused by my very slow bowel.My weight plummeted again. I was convinced I was dying and put my affairs in order.I then started Tpn in November 2016. I did well on tpn. It’s a major change from tube feeds as everything has to be sterile.

This was me last June 

 Three months in, I got my first infection in my picc line and blood clot. I then had a Hickman line which I accidentally pulled out with my wheelchair. My second Hickman line got mrsa and then I had sepsis and my third Hickman line got a staph infection. 

Last November I decided not to have a new Hickman line put in because I was spending so much time in hospital. It was a tough decision to make as I didn’t know how I’d survive. I got given calorie milkshakes and saw the gastro about every three months. Sadly when you come off tube feeds or tpn , the support ends. There was no one I called call if I wasn’t managing to get the calories in.

Fast forward to about March this year. I’ve been having unbearable stomach pain. I was going back and forth to the gp who just kept giving me different painkillers. Eventually one doctor decided to do a calprotectin stool test. This is a test for inflammation seen in Crohn’s disease. My came back high and I was referred for an urgent colonoscopy. That colonoscopy turned into just a plain X-
ray by the inflammatory bowel disease nurse. She said see you in three months. I saw my gastro in the meantime who dismissed my test result but said he’d order an ultrasound if my local didn’t do it. My mum rang to ask them to book it. I have no date. I went back to the gp begging for help. More painkillers that didn’t work. My weight plummeting. Agony unbearable. 

Last Sunday was the final straw and I went to a &e. I never ever go unless desperate as I have a fear of hospitals now. I went through 3 different people to tell them why I was there and eventually saw a doctor. She did bloods and urine sample and gave me painkillers. When you have a complex condition there is no where to turn. She said to come back to a special gp clinic yesterday to see a gastro. I thought finally someone might listen. I hadn’t eaten or drank for 48 hours. 

Before I went I wrote down why I was there, a brief history, diagnosis and medication. My blood sugar was very low by then and I had glucose to drink but couldn’t drink it.I saw a med student first then a doctor. A patronising doctor may I add. Said they won’t do scans as I’m young and radiation is bad. I ask if it could be gallbladder but he said it’s probably just my condition. I think I’m allowed to have something wrong that entirely not related to my condition. I had given up asking for help. Luckily he called the emergency gastro. He was nice and actually gave me a painkiller that works. I was painfree for a couple of hours last night and ate a tiny bit. Sadly I have to ration myself and I’m only able to eat a little if I take one in the evening. The doctor book me for an emergency colonoscopy and ultrasound.

I think this is the toughest fight at the moment. I don’t sleep much due to pain. I’m rarely able to eat or drink. Not sure how my body is still going. It could be down to my existing conditions but I want other things ruled out first. I could go back on tpn but it’s not going to solve the problem. I’m still going to have no quality of life. I spend my days in bed as it gets to painful to sit in my wheelchair for long. I’m horribly thin. The lowest weight I’ve ever been. I don’t sleep much due to pain. I just have to sit and wait.