Monday 27 April 2020

IBS Awareness Month 2020 - The Low FODMAP Diet

So, this is my second year blogging for IBS Awareness Month.

Irritable Bowel Syndrome is something that I've struggled with for a long time and for me it's just become my new normal. 

IBS is the medical name given to describe a number or gastrointestinal symptoms. IBS affects around 1 in 5 adults in the UK and it can vary in severity from person-to-person. Some of the symptoms include abdominal pain or discomfort, bloating, symptoms being made worse after eating and more. (British Dietetic Association)

This year I thought I'd give you a recap and update on the Low FODMAP Diet that I've been on since 2018.

For those who don't know the Low FODMAP Diet (link to a blog post I did which gives a fuller explanation) is a medically prescribed elimination diet specifically designed for people with IBS or other functional gastrointestinal disorders.

FOMAP's are different types of short-chain carbohydrates and FODMAP stands for each type of fermentable carbohydrates; these are...

These foods are poorly absorbed in the gut and include simple and complex sugars which can be found in a variety of foods including fruits, vegetables, wheat and milk.

The Low FODMAP diet has been pretty incredible for me. It's defiantly reduced my gastrointestinal symptoms (though I still have issues related to my other illnesses), but in terms of my IBS it is now so much better than it was a few years ago.

I still do get IBS symptoms like bloating, pain, cramping, constipation etc, but it's not all day everyday and when it does falre-up its more manageable and I also notice that often my symptoms will flare up after eating a food high in FODMAP's. 

Now usually when I have a flare up I'll just need to put some heat on my tummy and drink some herbal tea which usually settles things as well as remembering to be extra cautious for a short while to avoid FODMAP foods. If my IBS flare is really bad I might take some medication like Buscopan. I have my Mebeverine which I take before eating. I now longer need to take my Colpermin and I very very very rarely need to take strong laxatives except senna which I currently take every night. Before going on the Low FODMAP Diet I was taking bowel surgery strength laxatives and they still didn't work.

I still find it amazing how just changing my diet has improved my IBS.

One thing I've found really interesting is how before going on the Low FODMAP Diet I ate and drank everyday things now I can't tolerate any more such as soya, wheat, gluten and certain fruits and vegetables.

The Stage 1 of the Low FODMAP Diet was completely cutting out all foods that contains FOMAP's. 

The in Stage 2 of the diet you start to reintroduce foods to find out what you can or can't have, or what you can tolerate in small amounts.

I'm now on stage 3 which is living with a customised Low FODMAP Diet.Like for example I'm on a total wheat and gluten free now, and I've switched to drinking oat milk but I can tolerate small amounts of soya, like one soya yogurt a day or have a small latte. 

If you have IBS or any other form of digestive discomfort I would highly recommend the Low FODMAP Diet but you would have to speak to a medical professional first such as a doctor, nurse specialist or dietician who will know if it is suitable and safe for you to do so. It also helped to talk to a Dietician who can explain the diet to you and what you can and can't eat, how you're getting on, meal ideas and also to ensure that you're still getting enough calories and nutrients.

When I first started on the Low FODMAP Diet it was a fairly new thing in the UK, but now it starting to be better understood and there are many dieticians who specialise in it.

Obviously it's not a magic cure but it certainly has made live a lot better for me.

Monday 13 April 2020

Introducing 'Monthly Makes'

Starting on the 1st of each month I will be sharing with you a 'Monthly Make' which will include a variety of different things you can make yourself at home. Including origami, crochet and printmaking.

If there is anything in particular that you would like me to do a 'Monthly Make' on just comment below.

See you on the 1st April for my first 'Monthly Make'!

Monday 6 April 2020

Leaving the NICPM: Two weeks on

So I've been back home after a 5 month stay in Leeds at the National Inpatient Centre for Psychological Medicine, (or NICPM for short), for two weeks now. As a result I thought I'd give you an update on how I am an a little bit about my stay. Feel free to comment with any questions either below or on Instagram and I'll answer the few Q & A questions people asked me on Instagram in another post or YouTube video (or both, I haven't decided but I want to do more on my YouTube channel). Any way back to this post...

If you haven't read my posts going through my journey through my stay basically the NICPM gives 'biopschyosocial holistic care to individuals with complex functional disorders, medically unexplained symptoms and physical/psychological co-morbidities'. It has 8 beds and to an extent 4 beds for local patients and 4 beds for national patients who come from all over the UK including Northern Ireland.

(I'll put links to my rehab updates below.)

To be honest in my opinion, it's kind of been given the wrong name as the 'Psychological' part to me implies that your illness is 'all in head'. When yes there may be an emotional element (being chronically ill with a persistent torrent of symptoms due to a poorly understood illness undoubtedly will affect you emotionally), but the staff where all agreeable in the fact that our illnesses and symptoms where real and physical.

I mainly went to to deal with my complex list of medical conditions that included FND (Functional Neurological Disorder), non-epileptic seizures, M.E (Myalgic Encephalopathy) and other symptoms that didn't fit nice and neatly into a diagnostic tick box or 'medically unexplained symptoms' (just so they can have something to write).

Before going to Leeds I was receiving little support manage my health and I was petty much house/sofa-bound. Then to go to 24/7 support was amazing. What I liked was that fact that until the end of my admission diagnosis wasn't focused on much. It was more a holistic bubble of 'this is Naomi; these are her symptoms; this is what support she needs; these are her goals etc'.

One of the big downfalls for me was that because I was an out-of-area patient my stay was on a funding time limit. Initially I was given 12 weeks and I felt a pressure to make the most of my stay so reflecting back I feel that I pushed myself because of this. We managed to get two extensions from the CCG (the local NHS funding body that paid for my admission). This first was for a further 8 week stay and then 3 weeks to bring my admission to an end.

I didn't feel ready to leave. I knew I wouldn't come out cured and I did come out with lots of skills and knowledge and some improvement in activities or confidence but I didn't feel like I'd completely accomplished certain tasks that I wanted to leave feeling like 'yes, I can do this without much of a problem now'. But my stay was a positive one and I got a lot out of it in different areas. I also enjoyed the social aspect both with the staff and the other patients.

Some of the things that I got from my stay are:
  • Developing a routine
  • Learning how to pace and grade activities
  • Increasing my ability to engage in activities
  • Knowledge/skills on how to cope better practically and emotionally
  • Basic cooking (I especially love making omelettes and I've made quite a few since coming home)
  • Going out and feeling more confident and coping with going out
  • Being able to go out shopping and into places like caf├ęs
  • Social skills
  • Seeing to my own personal care
  • Managing my hypersensitivity especially photosensitivity
  • Working with the physiotherapist to improve my strength and mobility
  • Working with the occupational therapist on managing daily living tasks
  • Help with improving my sleep
  • Improved confidence
  • Being able to be more assertive
Coming home has certainly been a challenge to say the least especially with this coronavirus outbreak as a lot of the support that was put in place for me has either been put on hold or been reduced and it's now just telephone contact. As a result I feel like I'm trying to muddle through on my own and it's not been easy. It's hard as I went into rehab stuck at home, working hard with my rehab only to come back home to being back stuck at home and not know how long the country will be on lockdown for. I feel that the timing of my discharge was bad timing but the funding had come to an end and I feel pretty helpless. 

At the moment I'm just doing my best to stick to my daily plan as best as possible, do my physio and just generally trying my best. 

I've had to phone the ward a couple of times and there's been my telephone appointments as well as returning back to being my own medical sectary with making phone calls and sending emails. I've checked in with my advocate an I need to email her again. Today the clinical pharmacist at my GP practice phoned to check I was okay for medication which was nice with her to do. I've phoned the pharmacy a couple of times; the first time I called they said it was nice to hear from me as they knew I was going into hospital and they'd been wondering about me as it'd been a long time. 

The past few days and nights haven't been easy with increased pain, fatigue and a non-so-good seizure the other day. I'm just feeling so exhausted all the time and I'm worried about slowly sliding back. However I'm just trying to focus on the current slot in my daily plan and the skills and improvements I've made and refer to my 'Crisis and Relapse Prevention Plan'. Hopefully with time my routine will become more established and I'll have the skills to cope with the ups and downs of not just chronic illness but life too.

James Downs on Twitter: "#mentalhealth & #eatingdisorder #recovery ... 

NICPM Update Posts...

Saturday 4 April 2020

FND Awareness Month & Guest Post by Georgina

This month we see the first ever FND Awareness Month (which is pretty exciting). 

FND has affected my life a lot over the past 6 years, though it's now not my 'main' illness. I think it's great that FND, Functional Neurological Disorder, is getting more of a spotlight. Especially so because from living with the condition I know first hand how very little understanding of the condition there is and for me this has lead in my life to some very negative experiences especially amongst care professionals who don't understand the condition correctly or have the most up-to-date knowledge as Georgina writes about below. 
FND is basically where the brain's messaging system doesn't work as it should. The best way to try an explain FND is that your brain which is the hardware is fine, but the software doesn't work so well or not at all resulting in a wide range of neurological symptoms.

It's important to note that FND affects everyone uniquely; with it being a neurological disorder and the fact that as many people know there are many things that can go wrong with the brain the list of symptoms that come with FND is quite a long list. Some people may only experience one or two symptoms whilst others may experience a multitude of symptoms, but regardless of how many symptoms a person may have we're all struggling together and we need to be listened to and get the help we need.
Georgina's StoryA young woman sat crossed legged on a sofa with two dogs beside her.Hi! I'm Georgina and I'm living with a chronic illness called FND which developed after a trauma.
To better understand FND you can watch my How I explain Functional Neurological Disorder - see video below; there are other videos about my life with FND on my YouTube channel too if you would like to learn more.

How FND affects my life
FND affects every single aspect of my life. It dictates whether or not I can get out o bed, the clothes I can wear to the mobility aids I have to use. Due to FND, specifically my intermittent paralysis I have to use a wheelchair when I go out as I can't walk far. I've also had my driving license suspended due to having non-epileptic seizures which is another of my symptoms. There is little I can do by myself. Yet somehow, living with FND is possibly the best and worst thing that has ever happened to me. It's hard t explain and I don't expect anyone to understand. If I wasn't going through all of this I wouldn't;t be who I am today and I am thankful for that.

What I wish I knew before being diagnosed with FND
I wish I knew how much people blamed me for being chronically ill. I'm not in control of my body or my brain. People ay that my brain is 'just playing tricks', but that's not right. When you have FND the signals to parts of your body are impaired meaning that they get sent to the wrong place or don't get sent at all. I don't control these signals and it's not my brain purposely sending those wrong signals.

Sometimes doctors in the past have used the term 'psychosomatic' (which is a very outdated understanding of FND) instead of 'functional'; this makes understanding FND more difficult as it implies that FND is under the patient's control and it is a mental illness. This is NOT the case all all!
The invisibility of living with FND

On the outside and even inside my brain, I look like a normal 18 year old. I'm far from that. My life since developing FND has been a torrent of things from blood test to all sorts of different types of scans as well as all the medication I need to take. Yet despite all of these test the results have always come back clear. I've seen countless medical professionals from paramedics to various doctors in different specialities and I've had several hospital admissions. Unfortunately I've had doctors not believe me, blaming my symptoms on things like anxiety.
The invisibility is that you can't see that my brain doesn't function properly which is the difficulty in having an invisible illness.


Georgia is also taking part in my blog's #LetsTalkFND awareness event where she answers a question each day about living with FND to help raise some much needed awareness around FND and understanding of how it affects individual's uniquely. 

Each day Georgina makes a post on either her Instagram or YouTube channel in response to that day's question.

Question's include: 'I am ___ despite FND', 'FND in one word', 'Gratitude', 'Dear FND...', 'FND in three emojis' and 'inVISIBLE disABILITY'
If you want to join in it's not too late.