UK FND Awareness Day 2018

Today is UK FND Awareness Day. 

FND stands for Functional Neurological Disorder, is can also be referred to as FMD or Functional Movement Disorder depending on a person's symptoms. It is an umbrella diognosis for and number of symptoms. FND affects each person uniquely, some people just have one or two symptoms, whereas others may expererice many symptoms.

FND is a problem with the brain's messaging system. Basically the hardware (body) works but the their is a malfunction with the software (brain).

Symptoms may include:

• Seizures
• Involuntary movements
• Mobility issues such as poor gait and balance
• Chronic pain
• Fatigue
• Bladder and bowel problems
• Impaired cognitive function such as poor memory  difficulty thinking and concentrating etc.
• Speech difficulties
• Vision changes
• Headaches and migraines
• Muscle weakness and/or spasms
• Sensory disturbances, such numbness and neuropathic pain e.g. pins and needles

FND can be as debilitating as other neurological disorders such as MS and Parkinson's Disease.

"It is a poorly understood illness" - Dr. Jon Stone

FND can affect anyone of any age, gender, ethnicity, or social status.

More research is needed to understand FND, though current research using fMRI scans show up the disorder.

Support for people with FND and carers and professionals can be found at: https://fndhope.org.uk

Low FODMAP Diet - Update

© yourachingart_cfs

The other week I met with the Dietician again (15th) and so far Stage 1 of my Low FODMAP has been a success and I've seen a reduction in my symptoms - YAY! (though there's still some issues which we think may be related to my hypermobility gastro issues rather than my IBS). But I'm now ready to move onto Stage 2, which is introducing and trialling slowly different FODMAP foods, e.g. wheat bread, pasta, broccoli, apples, baked beans, peas etc. and seeing what I do and don't react to so I can customise my diet which is Stage 3. 

How Stage 2 works is over three days you trail a food, for example with bread on day 1 you have one slice of bread and then see how your symptoms are, then on day 2 if you're symptom free or have mild symptoms you'll have 2 slices of bread then on day 3 3 slices of bread depending on day 2 symptoms. However, if symptoms are severe you just stop and will know to rule that out of your diet form then on. Today I've have one slice of wheat bead and I've had some symptoms but I'm wanting to continue to day 2 just in case is psychosomatic and just to be sure before I do cut bread out my diet but I have feeling that wheat bread will be a no-go for me based on my experiences so far with the Low FODMAP diet. After trialling a food you then go back onto total low FODMAP for three days to clear out your system and then you move onto the the next food trial. If you got symptoms during the food trial and they're severe enough to stop you prematurely stop the trail and have 3 days total Low FODMAP again to clear out you system. 

I'm not particularly looking forward to Stage 2 as it will mean putting up with reactions and symptoms but hopefully it will mean that after after finished, which will take a few months my diet will be less restrictive.

Because cutting what and gluten out of my diet has been successful and helped with other things like my chronic daily headaches and skin rashes the Dietician suggested testing me for Celiacs Disease after I've finished the Low FODMAP diet. The only downside to that is that I'd have to got back onto a wheat and gluten diet for at least 6 weeks for them to then test me for Celiacs Disease.

Being poorly and 5th A&E admission if the year

So things have been a bit quite on my blog lately. Since visiting The Deep I've not been well with PEM (Post Exertion Malaise) and some sort of virus as I've had a nasty cough and temperature and felt what spoonie's call "normal person sick".

Then today on my way back home in Patient Transport I went into a prolonged seizure and ended up in my least favourite place - A&E and received the usual lack of "care". 

There are two sorts of illnesses according to the lead consultant - organic and functional; as my two main illnesses (which to him like my GP aren't "actual" illness) FND and M.E. are functional illness three is no treatment so it's just a case of "putting up with them" as the consultant put it. He seemed vary un-understaning and unwilling to help me in ay way which just upsets and funstrats me. Especially when nurses have the attitude that I'm feigning or just playing up. All i can really do is try my hardest to avoid A&E and email my neurologist again and copy in my care agency's nurse to keep her in the loop in the hope that we get some sort of care plan put together. I'm also going t chase up PALS (Patients Advise and Liaison Service) as I haven't heard anything back from my last complaint about my previous "care" in A&E. 

What I really don't understand is last year I used to get some good care in A&E at times and get medications to bring me out of my seizures and now that's all ceased to nothing bar a oral diazepam tablet put into my semi-conscious mouth and maybe some oral paracetamol for the pain.

I also got some not-so-good news today about my video telemetry test which is going to be even further away than originally thought due to long waiting lists and shortages of staff and beds so rather than it possibly happening April/May time its looking like June at the very earliest, possibly even longer (I've been eating since last July for his test). We're really needing this test to happen to rule out/in epilepsy as a contributor to my seizures and also so a proper care plan can be put in place. I'm also still waiting for funding to be approved for my neuro/functional medicine rehab placement in Leeds so I have it on my to-do list to find out the contact to see where we are with that as once that's been approved I can go on the waiting list for a bed.

Tomorrow will be a day off resting and trying to locate my glasses which went missing somewhere in the ambulance yesterday and they're my best glasses as they're my Cath Kidston grey tinted lenses ones that I use when I'm struggling with light sensitivity and I curently only own one pair of grey  tinted lenses, but I'm at the opticians on Wednesday so I'm going to get a second pair as I've found the tint really helpful and they don't look as bad in public compared to my purple Irlens lenses.

Right, I'm going to  finish there as I'm getting tired and nodding off as I type.

The Deep - Tue 6th March

I've not been well so this post comes a little late, but never later than never I say!

So last week I went over the bridge to Hull togo the The Deep with my carer for a day out. I went for their "Tranquil Tuesday" and called up to check that the event was happening and was told it was an all day even but when we got there we found that "Tranquil Tuesday" was after 3pm and we arrived at 12pm with 200 school children in the building. I and also the call handler may have gotten mixed up with their "Quiet Day" events which does make things confusing having two 'quiet events' on so in future I'm sticking to the Quiet Days as I really enjoyed that day when I went in the past - they have no school in and turn the lights up and he sound down so much much calmer!

Children and wheelchairs don't quite mix - in their excitement they want to be at the front of the tank and don't think about the wheelchair they've pack in around and that I can't see tank or that I can't manoeuvre my wheelchair anywhere. Plus I really could have taken my ear defenders with me!

The staff at The Deep where really great though and I got my entry ticket refunded over the confusion of the day's events. The catering the in the cafe is brilliant for allergies too - I managed to get a dairy, wheat and gluten free meal! The cafe also have wheelchair friendly tables and when we couldn't find a spare one in the main dining area two members of staff showed up to the upstairs dining area which was much nicer and quieter, plus it had a great view, and they asked us if we could fill in a comment cards comments come better from visitors than staff alone so we said how allergy friendly the cafe was but it would be better for the "wheelchair friendly tables" sign to say "reserved for wheelchair only" so that non-wheelchair users think more about where they choose to sit. We also said how the drinks mugs could be made bigger! (You an never have a big enough mug for Yorkshire Tea!) We also noted how helpful the staff were.

There's a huge range of animals at The Deep from colourful neon anemone's, tropical fish, animals from the Amazon including vegetarian piranha's, snakes and poisonous dart frogs and even penguins. One of my favourite animals are the jellyfish - I find them fascinating creatures and amazing to watch them move. I love all the colourful fish and anemone's too.

It's a day I'd really recommend and if you're a fellow spoonie I'd plan to go after 3pm (they close at 6pm) when the schools have gone home or go on one of their Quiet Days events which have BSL talks too, plus your entry ticket is valid for a year and carers get in for free.

I took lots of photographs but below are a few of my favourites...

A Post to End Eating Disorders Awareness Week

Some statistics from Beat...

• It is estimated that 1.25 million people in the UK have some form of an Eating Disorder but this number doesn't include those undiagnosed or recognise they are ill.
• Eating Disorders don'e discriminate, they affect anyone of any age, gender, race or background.
• It is estimated that 1 in 4 suffered of Anorexia or Bulimia are male.
• 4% of the UK population will suffer from some form of eating disorder int heir lifetime; many more people will be affected by the effects such as friends, family member and colleagues.
• There is no one single cause of an Eating Disorder, research is being done to understand more but it is likely that is is a combination of genetic, biological, psychological and environmental factors.
• Eating Disorders are no about food or weight but instead the behaviours are about a way of coping with difficulties and feeling in control.
• Anorexia has the highest mortality rate of any mental illness.
• Eating Disorders cost the UK economy £16.8 billion pounds per year - £4.6 billion in treatment cost to the NHS; £3.1 billion costs to suffers and carers; £1.1 billion to private treatment costs and an £8 billion pound in loss of income to the economy
• 32% of people feel discriminated at work because of their eating disorder.
• 41% wait more than 6 months for a diagnosis and/or treatment
• Research into Eating Disorder is severely underfunded - 15p on eating disorder research per adult affected verses £1,571 on cancer
• The key to recovery is early intervention which often doesn't happen.
• Suffers of eating disorders are 50% less likely to relapse if treatment is sought immediately.
• 11% of suffers are left with with long-term psychological and physical problems for example osteoporosis.
• In some area of the country in 2014 suffers waited on average 182 days to access outpatient treatment.

For more information visit www.beatingeatingdisorders.org.uk. 

Looking for support?

Helpline: 0808 801 0677

Email: help@beatingeatingdisorders.org.uk

Youthline: 0808 801 0711

Email: fyp@beatingeatingdisorders.org.uk

Helpline are open 365 days a year 3-10pm.

on the website message boards, online support groups, one-to-one chats and more information about recovery, news, research, training and support and more can be found.

Twitter: @BeatEDSupport

Instagram: BeatEDSupport

BODY GOSSIP: 'This one is for you'

This beautiful video by Body Gossip has been around for a while but I still love it and though during EDAW would be a good time to share it. It's a poetic film staring different famous faces and is about Eating Disorders and fighting back to claim a life recovered.

To find out more about Body Gossip's work click here.

International Wheelchair Day 2018

The Aims of International Wheelchair Day*

• To enable wheelchair users to celebrate the positive impact a wheelchair has in their lives.

• To celebrate the great work of the many millions of people who provide wheelchairs, who provide support and care for wheelchair users and who make the World a better and more accessible place for people with mobility issues.

• To acknowledge and react constructively to the fact there are many tens of millions of people in the World who need a wheelchair, but are unable to acquire one.

*Reference

Today is International Wheelchair Day. Another one of those quirky Awareness Days that I came across.

I'm a part time wheelchair user and since getting my wheelchair it has given me greater freedom and indepenence. Granted it's not the best wheelchair in the world but it serves it's purpose and means I can enjoy things like days out with less pain, fatigue and dislocations.

I use my wheelchair because of my M.E. which causes extreme fatigue so using my wheelchair means I can conserve my energy and it reduces my pain which has a knock-on effect with PEM (Post Exertion Malaise). I also have an illness called FND (Functional Neurological Disorder) with FMD (Functional Movement Disorder). This is where my brain doesn't send messages to my legs properly so I have an off-balence gait and other symptoms like chronic nerve pain in my legs; sometimes I lose all feeling in my legs so a wheelchair is essential in getting me around.

Having interchangeable mobility needs can be hard.People often assume they are for older people or those who are paralysed but they're wrong. I'm faced with questions like "why are you using a wheelchair when I've seen you walking with your crutches?" which can be difficult to answer and hear and explain. There are all sorts of reasons why people need to use a wheelchair. 

© Stickman Communication by Hannah Ensor