18 July 2019

Recent Gastro Tests

I have been experiencing gastro issues for over 2 years now and as of writing this I still don't have an explanation for why I'm experiencing these symptoms. I have had several tests done and all have come back clear apart from showing that I have acid reflux (which we already knew) and that certain foods get stuck in my throat (again which we already knew). In late June/early July I had 3 more tests done (2 that I'd had done before and 1 which I hadn't). 

On the 20th of June I went for a gastric emptying study and a stomach and bowel scan. We arrived just in time for my 9:30am appointment. The same two guys who did the tests last time did them this time as well (they couldn't believe it had been so long since they'd done the tests back in August 2017). The process was very similar to how it was back then only this time we skipped the oesophageal part of the test (as it wasn't requested) and the time in between scans for the GES was longer (it used to be 5 minutes, it's now 10 minutes).

We went through some security questions (name, date of birth, address etc.) then they went to prepare the radioactive food (in my case an egg sandwich). After about 10 minutes or so they came back with the egg sandwich on a plate, which was wheeled in on a trolley. We went through the security questions again (just to double check that they had the right person) then I was given a pair of rubber gloves to put on.

After requesting a glass of water (I wasn't allowed anything to eat or drink from midnight the night before) I started the sandwich. In the end I managed to eat about 3/4 of it, having a couple of sips of water whilst eating it (I still wasn't allowed a proper drink as it would dilute the solution in the food). As soon as my mom informed them that I'd finished, it was straight onto the scanner.

I spent the next 2 hours lying down on the scanner having a 2 minute scan done every 10 minutes (this was the gastric emptying study which measures how long it takes for your stomach contents to empty). The next test (stomach and bowel scan) was done over 4 hours. It was a 10 minute scan done every hour (thankfully I could leave the scanner room in-between scans during this test as the duration between scans was longer). On the 4th and final scan I had two 10 minute scans done; one 'normal' top down one (the scanner in the same position as it had been all day) and one side on one to view my bowel from the side (I had to put my arms above my head for this one which my shoulders didn't like!).

By the time all the scans had been done and checked to make sure that they were clear enough it was 4:30pm (we were there for a total of 7 hours). The consultant was due to look at my images and compare them with my previous ones on the 24th of June. Once he's finished the results will be sent to the Gastro who referred me.



Me lying down on the scanner.

On the 2nd of July I started my colon transit study. We arrived 10 minutes early to my 2pm appointment but weren't seen until 2:20pm. This was the first part of the study so all I had to do was consume a radioactive drink. I was taken into a small room where we went through the usual security questions before a plastic apron was put around my neck and across my lap (incase any of the liquid spilt). I was then handed a small opaque bottle containing a clear liquid. I was asked to drink it as quickly as I could as it would be more effective. The same bottle was then filled with orange squash two times to 'rinse' it out and make sure I got all of the solution. I was then free to go home until my first scan the next day.

On the 3rd, 4th and 5th I had to be there by 9am (we made sure to arrive early). I was the first to seen as they had to fit a special lens onto the machine to take the scans required for my test (they used the same machine as the one on the 20th but it was operated by different members of the nuclear medicine team). I was seen early every day and the scan only took 5 minutes (obviously the usual security questions were asked before the scan took place each day).

On the 5th (my 3rd scan/day 3 of the study) the ladies setting up the scanner thought I was there for my 2nd scan because of how many markers were still left on my previous scan. It wasn't until someone reminded them that it was Friday that they realised that I must be there for day 3. After seeing my day 3 scan the man reviewing my scans decided that I needed to come back on Monday (the 8th) as there was "still a lot of activity". I'd only received appointments for the 2nd/3rd/4th/5th so I'd been expecting this to be last day of the study so I was pretty surprised. When talking to my mom on the way home she said that she'd seen my scan on the screen and that it looked pretty much identical to the one from the day before.

On the 8th (day 6 of the study) I also had to be there for 9am. We went through the same routine as we had on the 3rd, 4th and 5th (by this point several members of staff knew me by first name!). They reviewed my scan to decide if I needed to come back on Tuesday (the 9th). Thankfully a fair amount of progress had been made since Friday (5th); there was still some markers left but they now had enough information to work with. Just like the results from my gastric emptying study and stomach and bowel scan, the results from my colon transit study will be sent to the Gastro who referred me.

Note: I had to prep for the colon transit study by fasting (both food and drink) from 12pm to 5pm on the 2nd July. I also had to stop taking my laxatives on the 29th June and couldn't take them again until the end of the study (8th July).

20 June 2019

Flash's Adoption Story


6 years ago today (20th June) we adopted my kitty Flash. She came into my life unexpectedly and I couldn't imagine life without her now, I'd be lost without her.

She has an unknown past as she was a stray living on the streets until she was taken in by another family (from whom we adopted her). Due to her unknown past no one knows exactly how old she is or when she was born but our vet estimates she's between 14 to 16 years old. We celebrate the day we adopted her (today) as her birthday.

Me and Flash met through a friend of a friend; their boyfriend had taken her in off the streets a few months before, neutered her and had been meaning to find her a forever home. They were now moving and wouldn't have space to look after her so they needed to find her a home fast. When he asked if they knew of anyone suitable who might be interested they said they thought of me immediately.

Flash (then called Lightening) was living in a house with 3 other cats and 2 large dogs. She was already very timid and scared when they brought her in off the streets but this was made worse by being bullied by the other cats and cornered/pinned down by the dogs. She would run away for days at a time only briefly returning for food before running away again.




When I heard about the heart breaking situation she was in I was desperate to help. I immediately explained the situation to my mom and asked if we could adopt her. She had no objections but said we should make sure that dad was okay with it too first before we said yes. Pretty much as soon as my dad came in from work I started to tell him about Flash and asked him if we could adopt her. He said he had no objections either and that it'd be nice to have a cat in the house again.

Arrangements were made for them to drive her to our house (a 35 minute journey) a few days later. A few minutes into the journey she was so terrified she wet herself. When she arrived at our house she was hiding in the far corner of her carrier with her lower back, bum, back legs and all four paws soaked in her own urine. There was no way she would have been able to clean herself so the first thing we had to do once she'd started to calm down was take her upstairs and wash her. Understandably she hated being washed but she let us shower her down (avoiding her head) and gently rub her dry before she ran under my bed to hide. 

Later that evening she crept out from under my bed to eat some of the food I'd put for her earlier. After eating some food she cautiously made her way back over to my bed and started sniffing around my room, getting used to her new surroundings. She spent a while checking out my room, becoming familiar with the layout and new smells before she ever so slowly peered her head up over the edge of my bed. After lingering there a while she slowly eased herself up onto my bed and laid down at the bottom of the bed. She'd never done this in her previous home so for her to do this on the first night was so exciting! 


After sleeping for an hour or two at the bottom of my bed she decided to approach me (this was our first 'proper' introduction/meeting). I slowly held out my hand, palm upwards for her to sniff me. She sniffed me a little then gave me a single lick of approval before she cautiously made her way onto my lap, where she proceeded to curl up and go to sleep (this is where her first photo was taken). She had made so much progress in just one night, I was so happy I could have cried with happiness.

They came to visit her a week later to see how she was doing and check that she was settling in okay and they could hardly believe that she was the same cat. She was sitting on my lap, purring, accepting fuss, eating regular meals and her coat looked so much better. It just goes to show just how much of a difference being in the right environment can have on an animal's quality of life; all she needed was a quieter, calmer home to thrive and come out of her shell.

She's no way near as timid as she used to be and her confidence has grown in leaps and bounds. She spends most of the day either cuddled up in bed with me (she loves snuggles under the covers) or sun bathing. Her gentle, affectionate personality and super soft coat seem to leave a good impression on anyone who meets her. All fuss is good fuss to Flash (including belly rubs!) so you can stroke her and kiss her as much as you like without fear of being clawed. She truly is such a special cat and I feel so blessed to have her in my life. I never thought it was possible to love an animal this much until I met Flash ❤️


The first picture I took of Flash: The first time she built up the courage to come and sit on my lap, about 10pm on her first night in her new home.


05 June 2019

My 'Good Deeds' For May 2019

At the start of January I shared a post about my New Year's Resolution to try and spread more happiness by completing at least one 'good deed' per month (if you haven't seen it already you check that out here).

In January I managed to complete 3 good deeds. In FebruaryMarch and April I completed 2 good deeds. This past month (May) I also completed 2 good deeds. Here's the summary of the good deeds I completed in May.

• I donated to the mental health charity Mind:
The 13th to the 19th of May was mental health awareness week. In support of mental health awareness week I compiled a list of resources for various mental illnesses and situations where you might need extra support (if you haven't seen that post already you can check that out here) and made a donation to the mental health charity Mind.

Mind is an amazing charity that supports anyone with a mental health problem(s). They provide information, a phone and text help/info line, webchat, an email help/info line, local Mind services, a supportive online community (called Elefriends), training courses and campaign for change. They don't just provide support and information for those experiencing mental health problems, they're also there for a sufferers family members and loved ones. Mind has (and continues) to support so many people, last year alone Mind; answered almost 100,000 calls, supported over 425,000 people via their local Mind services and their information was accessed 12 million times.

You can...
- Visit Mind's website here.
- Visit Mind's online community here.
- Donate to Mind here.



• I held a fundraiser to raise money for the charity EDS UK:
The month of May is EDS awareness month. I thought what better way to both raise awareness of the condition and help raise some much needed funds for vital research than by holding my own fundraiser. The charity I chose was EDS UK, a charity very close to my heart as they're the only charity in the UK that supports sufferers with all types of EDS.

I called my fundraiser 'guess the name of the zebra'. It was similar to a guess the name of the bear fundraiser only you guess the name of a plush/cuddly zebra instead (I thought this was more fitting as zebras are the 'mascot' for EDS). I complied a list of 30 names (each beginning with the letter Z) for people to chose from. Priced at £1 per name I managed to raise £30 for EDS UK once all of the names were chosen.

You can... 
- See full details of my fundraiser here.
- Visit EDS UK's website here.
- Donate to EDS UK here.




28 May 2019

EDS Myths and Facts


May is Ehlers Danlos Syndrome (EDS) awareness month (if you haven't already seen my post explaining what EDS is you can find it here). With EDS being a rare condition not many people have heard of it unless they know someone who has it and even then they generally don't know much about it. There's a lot of myths and misunderstandings about the condition (not just within society in general but the medical profession too) so I thought I'd write this post to clear up a few of these myths whilst raising awareness for the condition at the same time. 

Myths
Myth: "People with EDS are always tall, thin, white and female".
The Truth: EDSers come in all shapes, sizes, nationalities and genders.

Myth: "Everyone with EDS has the same symptoms".
The Truth: Just as no two zebras have the same stripes, no two sufferers have the same symptoms. Each person with EDS is unique.

Myth: "There's no cure or treatment for EDS, therefore it's pointless to confirm diagnosis".
The Truth: Whilst it's true that there's currently no cure for EDS, there are treatments available which can help manage symptoms and as a result greatly improve a patient's quality of life. A proper diagnosis can also help the patient and their doctors be aware of possible comorbities, new symptoms or complications that may arise. It also enables sufferers to help prevent further damage to their bodies and family members who may also have EDS to be tested.


Myth: "You don't have any bruises so you can't have EDS".
The Truth: Not everybody who has EDS will bruise easily. Those who do tend to have fragile blood vessels and translucent skin (though this isn't always the case).

Myth: "EDS pain is all in your head".
The Truth: Pain from EDS and related disorders is very real and can be severe, chronic and hard to control. In fact Dr Forest Tennant puts EDS in the category of being in the top three most severe pain problems.

Myth: "Dislocations of unstable joints are painless".
The Truth: Joint dislocations and subluxations can hurt and may even worsen over time. If a joint 'badly' dislocates or multiple dislocate at once it is possible to cry, scream or even faint from the pain.

Myth: "People with EDS only need to exercise and loose weight to feel better".
The Truth: Healthy choices are good but EDS is an incurable, progressive, genetic disorder and no amount of lifestyle changes or exercise will change that.

Myth: "People who are incapacitated one day and fine the next are just fakers".
The Truth: EDS symptoms can be intermittent and unpredictable, changing from day to day (sometimes even within a matter of hours).

Myth: "Hypermobility just means you're bendy. It's benign".
The Truth: Hypermobility can cause extreme pain, injuries and even be disabling.


Myth: "There's no way your hips can just 'pop out' when you're walking".
The Truth: With EDS partial dislocations (subluxations) may occur with very little or no trauma at all.

Myth: "You don't have stretchy skin so you can't have EDS".
The Truth: Stretchy skin is not a distinguishing characteristic among all types of EDS. There are several types of EDS, some with stretchy skin some without. The absence of stretchy skin doesn't necessarily mean that someone doesn't have EDS.



Facts
Fact: People with EDS can have wonderfully soft, velvety skin which is often covered in bumps, bruises, scrapes and scars.

Fact: Chronic, widespread and unpredictable pain can significantly impact quality of life for people living with EDS.

Fact: The most common type of EDS (Hypermobile EDS, also known as H-EDS) can't be diagnosed by genetic testing. Instead it is diagnosed based on the Beighton Scale (measuring hypermobility) and clinical observations/symptoms. Researchers are working on finding the right gene(s).

Fact: People with EDS often look perfectly normal, even when facing horrible pain and multiple, disabling, life-threatening conditions.

Fact: From TMJ, food allergies and dental issues to gastrointestinal problems, even eating can be a difficult, traumatic time for those with EDS.

Fact: Many people living with EDS struggle with intermittent impaired cognitive function, commonly known as 'brain fog'.

Fact: Often, diagnosis of EDS takes 10+ years from the initial onset of symptoms.

Fact: With most forms of EDS parents have a 50% chance of passing it on to their child(ren).



18 May 2019

Mental Health Resources

This week (13th to the 19th of May) is mental health awareness week. I've put together this list of resources for various mental illnesses and situations where you might need extra support. These resources aren't just useful for those going through it, they're also useful if you want to know how to support a loved one.


Please remember:
  • You are not alone.
  • You are enough.
  • Recovery isn't linear.
  • Things will get easier over time.
  • It's okay to ask for help.
  • You will have good days and bad days.
  • Don’t be ashamed of your emotions, for the good or bad ones. 
  • It's okay to take medication.
  • Just because your past is dark, doesn't mean your future isn't bright.


Abuse:







Anxiety:


Borderline personality disorder:













OCD:

  • How to support someone with OCD 1 2


Schizophrenia:



Self harm:











Support:

Websites- 

Helplines (UK)- 
  •  Alcoholics Anonymous: 0845 769 7555 (Alcohol addiction)- 24 hour helpline
  •  Anxiety UK: 03444 775 774 (Anxiety)
  •  Beat: 0808 801 0677 {adults} or 0808 801 0711 {under 18s} (Eating disorders)
  •  CALM: 0800 58 58 58 (Male suicide)
  •  Cruse Bereavement Care: 0844 477 9400 (Bereavement)
  •  Mind: 0300 123 3393 Text 86463 (General mental health)
  •  Narcotics Anonymous: 0300 999 1212 (Drug addiction)
  •  National Gambling Helpline: 0808 8020 133 (Gambling addiction)
  •  OCD UK: 0845 120 3778 (OCD)
  •  Papyrus: 0800 068 4141 (Suicide)
  •  Refuge: 0808 2000 247 (Domestic violence)- 24 hour helpline
  •  Samaritans: 116 123 (General support)- 24 hour helpline
  •  Victim Support: 0808 168 9111 (Affected by crime and/or traumatic event/s)- 24 hour helpline

Helplines (outside of the UK)-
  •  Crisis Services Canada: 1-833-456-4566 (Canada)
  • IMAlive: 1-800-784-2433 (US)
  • Lifeline Australia: 13 11 14 (Australia) or
  • National Suicide Prevention Lifeline: 1-800-273-8255 (US)
  • SAMHSA’s National Helpline: 1-800-662-4357 (US)
  • The Trevor Project: 1-866-488-7386 (US)