GUEST POST - "Moving Mountains by Natice's Life" for Rare Disease Day 2018

Today is World Rare Disease Awareness Day. A day dedicated to spreading knowledge and awareness on the world's most rare illnesses.

Most people, go through their whole lives completely unaware that most of these rare disorders exist.Though some like myself, are sadly very aware, as they live with such every single day.

My name's Natice, I'm 24 and live with several illnesses  3 of which are classed as rare.

Today I'm going to focus on a disorder called Syringomyelia.

Syringomyelia is a rare disorder in which a cyst forms within your spinal cord. As this fluid-filled cyst called a syrinx, expands and lengthens over time, it compresses and damages part of your spinal cord from its center outward. 

It is considered a rare disorder due to only affecting 8 people per 100,000. In comparison, cancer affectsmore than 1 in 3 people showing that Syringomyelia is not a common prevalence.

Example of a cyst in the spinal cord

The majority of cases of syringomyelia are associated with a complex brain abnormality known as a Chiari malformation. Additional causes of syringomyelia include tethered cord syndrome, meningitis and spinal trauma. In some however, no cause can be identified and the reasons for this is still unknown.

Damage to the spinal cord caused by a syrinx can cause symptoms such as progressive pain, stiffness, numbness and loss of feeling in the body depending on the location of the syrinx in the spine .

It is a progressive illness that can lead to bladder and bowel incontinence, gastrointestinal disorders, circulation issues, severe muscle weakness and and muscle wastage. 

Many also develop spasticity in the legs and uncoordinated movements (ataxia), eventually affecting the ability to walk. In severe cases, paralysis of the arms or legs can occur. 

Treatment for Syringomyelia depends mostly on the cause, where Chiari Malformation is present, a posterior fossa decompression is performed whereby a small amount of bone from the skull is removed to reduce pressure on the brain and decompress the brain stem. In cases where a Chiari doesn't exist but symptoms are severe a shunt can be placed into the syrinx in the spine to release the pressure however this comes with great risk and often causes greater spinal injury. Most patients are monitored with yearly scans to track the progression and treat the symptoms where possible to prolong surgery.

My aim for life with this disorder is to make the most of every day and achieve as much as I can.

Take the time today to contact someone you know with a rare illness. Ask how they are, take interest in their well-being and show them you're there for them. Compassiom and kindness from friends are one of my biggest spurs to keep going .

Care About Rare! 

GUEST POST by Laura for Eating Disorder Awareness Week 2018

*** Possible Trigger Warning*** 

I could talk for a long time about my journey with Anorexia, I’m not going to try and condense 18 years into one blog post! So I wanted to highlight a few aspects I feel are of particular importance.

My battle with Anorexia started 18 years ago at the age of 11. At the time that was very young, although nowadays sadly that is not uncommon at all. From the age of 12-17 I spent all but a few months on inpatient units and as a result of this I didn’t do the ‘normal’ growing up that most teenagers go through and that has had a big impact on my life. Anorexia doesn’t just affect a person physically. It is primarily a mental illness and it is all encompassing. It affects you mentally, physically, emotionally, socially, your family, friends, relationships, education, career and independence.

My battle has taught me that Anorexia does not discriminate. It is not a disease of white middle-class girls as once believed. In treatment I have met females and males, rich and poor, disabled and non-disabled, individuals who are academically gifted and those that struggle, old and young, and people of all races. Anorexia doesn’t care who it chooses as its victims.

I have Autism, which was diagnosed shortly after my first admission, and I believe this was a big factor in me developing Anorexia. There are strong links between Autism and different eating disorders and for me my anorexia gave me everything that my Autism craves; routine, structure, control, obsession. People with Eating Disorders often suffer with co-morbidities and rarely is an eating disorder seen as a problem in isolation, which is why it is important to treat each person as an individual, addressing their spectrum of difficulties as a whole.

As much as obviously I wish this was not the path my life had taken and I wish I did not have this illness, it is important for me to reflect on the good that has come out of it. It has helped make me the strong person I am today. It has taught me that even in your darkest hours when it seems like the end, there is light. It has taught me there’s always something worth fighting for. I have helped write articles, volunteered as a Beat Young Ambassador, done presentations to doctors, nurses, teachers, school children about my story and eating disorders, set up a youth group for teenagers struggling with mental health problems and now I work with a university teaching on their Child Mental Health course and am able to educate students and future healthcare professionals about Eating Disorders. All these things show me that this hasn’t all been worthless. My illness, my battle hasn’t been for nothing.

Eating Disorders Awareness Week (EDAW)

Today marks the start of Eating Disorders Awareness Week.

Eating Disorder's are a mental illness and have the highest mortality rate of any mental illness - far higher than depression. The statics are the 1 in 5 suffers of an eating disorder will lose their life, either from organ failure, suicide or malnutrition. That is what early intervention and access to services is key.

Beat is the UK's leading charity for Eating Disorders supporting suffers, and other affected by Eating Disorders such as friends, family members, siblings and professionals. They also run a lot of campaigns try and improve the care, support and services.


Each year there is a theme and this year's theme is ‘Why Wait?

"On average, 149 weeks pass before those experiencing eating disorder symptoms seek help. That’s almost three years, 37 months or 1,043 days. On top of this, in a YouGov survey conducted for EDAW, more than one in three adults (34%) in the UK, who gave an answer, could not name any signs or symptoms of eating disorders. Find out more about the signs of an eating disorder click here.
We know the sooner someone gets the treatment they need, the more likely they are to make a full and fast recovery. As well as campaigning to improve the services available, we recognise that we must raise awareness of the signs and symptoms of an eating disorder and encourage and empower people to take action now – no matter how long their symptoms have been present."

Beat's Helpline Details are:
Telephone: 0808 801 0677
Email: help@beatingeatingdisorders.co.uk

Beat's YouthLine Details are:
Telephone: 0808 801 0711
Email: fyp@beatingeatingdisorders.co.uk

Links:
Beat - EDAW
Beat - Tips for Spotting Eating Disorders
Beat - Early intervention
https://themighty.com/2016/04/anorexia-doesnt-make-someone-selfish/ 

Post Exertion Malaise - A very foggy day

© yourachingart_cfs

Today has been a very tired, sleepy and brain fogged day.

"Post-exertional malaise (PEM), or post-exertional symptom exacerbation, describes a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity.PEM is a highly characteristic clinical and diagnostic feature of ME/CFS. In some respects, PEM is an illness within an illness."  - M.E. Association

The onset of PEM typically takes 24-48 hrs. Today's PEM is from Thursday's seizures.

I sleep in until lunch time (accidentally) then forced myself to get out of bed to try and help with sleep hygiene (though I would have loved to have stayed in bed all day). I've literally had to drag myself through the day. Putting on some comfy "day clothes" - jersey harem trousers, a baggy t-shirt and a cardigan. (So basically day time pj's). I then got myself downstairs and took my meds and got something to eat and drink and the lay on the sofa with my heat pad as my lower back is still spasming and half slept/half watching the TV. I did manage later int he afternoon to play a couple of rounds of Rumikub (an game) with Dad before retiring back to the sofa and my brain was fogging up and my speech was slurring. I then went back to laying on the sofa with my heated with the TV for company. Next task was to get up for tea and we had company which took a lot out of me and after a while I returned to my comfy setup on the sofa.

I just thought I'd do a little post before heading to bed and hopefully reading this you'll have learnt a bit about PEM.

The thing with PEM is it's always a catch-up day. Every day is filled with PEM from something, it is just that some days its worse than others. Days like today are my bad days when my symptoms and fatigue and functioning levels are worse where as I get other days where I can push through it.

"PEM causes intense exhaustion as well as an upswing in other symptoms that last for at least 24 hours after physical exertion. That may not sound so unusual to those unfamiliar with it — after all, we all need time to recover after a tough workout.
When it comes to PEM, though, little about it is normal or familiar to people without ME/CFS.
It's not just about overused muscles or needing a little extra rest. 

PEM can range from moderately stronger-than-normal symptoms to completely disabling. In a mild case, the person may have extra fatigue, achiness, and cognitive dysfunction. In a severe case, PEM can bring on intense flu -like symptoms on top of extreme fatigue, pain, and brain fog strong enough that it's hard to even form a sentence or follow the plot of a sitcom. 

That's hardly what the rest of us go through after a hike or a trip to the gym. Also abnormal is the amount of exertion it can take to put people in this state.
As with the severity, the exertion needed to trigger PEM theories case-by-case. For some, it might kick in after a little bit of exercise on top of a day's regular activities. For others, is incredible as it may seem, it can just take a trip to the mailbox, a shower, or sitting upright for an hour." - Very Well

The day after yesterday...

I struggled to get off to sleep due to pain and my head was hurting a lot after banging falling to the floor. Eventually sleep came though in the early hours.

I gave myself a lay-in to give my body a rest and was woken up to a FaceTime from my friend. I then called the Therapeutic Community (TC) just to let them know how I was and they was aware about my bad experience from another TC member who had read yesterday's body post. I still feel unsure going back to the TC as my seizures get int he way so much and I struggle physically to get myself through the day there (which probably isn't helping my seizures), but on the flip side I need the TC.

I just rested today - watching TV, writing a reply to a pen pal and sorting out my certificates to decide what distance learning course to do next - I've signed up to study 'Understanding Autism in Healthcare Settings'; even though I'm not able to continue volunteering at this moment in time I'm continuing with the courses ready for when I'm well enough to go back to helping out at the children's hospice. I'll post more at a later date.

I also did some practical things: 

• I managed to get a hold of my neurologist's (Professor Edwards) secretary and explained the urgency of his response to my emails and how my GP does't see FND as a "real" illness and is therefore leaving my care up to him. 
• I also tried to call the admissions co-ordinator a few times to try and chase up my video telemetry referral which was made in July but all I got was the voicemail, which is what I got the other week when I tried.
• I also called PALS (Patient Advice and Liaison Service) to raise a concern about my "care" in A&E yesterday. I sort-of gave up on contact PALS about my "care" in A&E as nothing was changing but after yesterday I decided to give it another shot and I've also decided that this time if nothing comes of it I will make it a formal complaint which feels a bit daunting but my "care" in A&E just simply cannot continue.

I also have my deliveries from the continence service and the pharmacy, though annoyingly my increased dose of Clonazepam wasn't in my tray so I had to call the GP practice and they didn't get back to me so I'm going to call the first thing on Monday morning.

Half the time I feel like my own personal medical secretary!

Now though for bed in my new zebra pj's and Harry Potter playing me to sleep.

Fourth A&E Admission of the Year - 'It just gets worse'

My aim of this blog is to be honest with my experiences and personal views. It initially is an account for myself which I share publicly to raise awareness and understanding.

Today I went into another episode of 'status seizures'. The paramedics were called and like the last crew decided to do nothing for my seizures - the hope of getting any treatment, such as IV Diazepam is vastly fading leaving me in more pain and feeling more hopeless than ever; will my illness be ever fully understood and taken as seriously as epilepsy?

I was taken to A&E on blue lights and sirens and taken straight into resus. Still unconscious and having repeated seizures. I stayed in resus for a while but still no Diazepam. My vitals (blood pressure, temperature, pulse, O2 saturation levels) were taken along with an arterial blood gas - a procedure I usually hate so I'm thankful I was unconscious. I was then taken to a high observation cubicle; still having seizures. I was swinging between unconscious tonic-clonic seizures and semi-conscious myoclonic seizures but I was 'locked in' my own head - I couldn't speak, I couldn't move voluntarily, my vision had black spots etc. There was no "care" no-one came to me each time I had a tonic-clonic seizure and eventually the curtain was closed on me as I was distressing other patients. I have no idea how long I was in this state for. Then suddenly a nurse came in, he sate me bolt upright and put a cup to my mouth and poured some water in which I promptly choked on; he then put a tablet in my mouth along with more water; expecting me in my semi-conscious state to swallow. Surely if someone was semi-concious they would issue IV medication, but no, A&E apparently don't want me to have IV medication anymore for reasons beyond my understanding. Any sort of pain relief wasn't even considered despite the agony I was in that I couldn't communicate, though you would have thought from my past admissions and the fact the I have hypermobile joints that anyone with any common sense would realise that I must have been in pain?!

I managed eventually to sign 'phone' to student nurse who got my phone for me and called my Dad who promptly dropped everything to come and rescue me.

My seizures came on suddenly; I went from standing to on the floor hitting my head. As I type my head still hurts (a lot) but I wasn't going to spend another second in A&E. If I had of been conscious I would have told the paramedics to leave me where I was or have called Dad earlier once I was in A&E - my plan in my previous post about A&E. On the plus side the minute I got home Dad sorted me with pain relief which A&E epically fail to do and get some quiet and rest. In the morning if my head is still sore I think I'll call the GP surgery - I just hope they don't tell me to go to A&E because I will not voluntary go there, but if I explain to my GP the reception I get in A&E hopefully they'll see me and just check me out *fingers crossed*. Hopefully though after some more pain relief and a nights sleep my head will feel better and my pain will have eased. I'm grateful that I have oramorph at home as its more than I'd get when I'm in A&E and it means I can manage my pain at home. Now though I just need to put on my zebra pj's and get to bed.

Oh, earlier I also sent an email to my neurologist and nurse asking them the speed up getting the care plan written up and to hi light the dire situation I'm in with paramedics and A&E.

Pamper Afternoon

After checking out the local college's salon getting my eyebrows waxed a few weeks back my carer who was with me suggested I should book myself in for a little pampering session.

So with the help of my fabulous carer today I’ve made it out to the salon to get my make up done, have a conditioning hair treatment and get it curled and braided all for £8.70 and I really enjoyed myself, especially the hair part and I'd definitely be booking in again!

I'm now utterly exhausted now and need a nap but at least I’ll look like sleeping beauty. I feel much more sparkly after treatment myself. Just goes to show how a little papering and self-care can go a long way to help you feel a bit brighter again after a tough few days of seizures and other bits a pieces going on.

The finished result

Sleepy Day and the Fight to Care

I had another seizure this morning. Just a short one and luckily Dad was there. He picked me up and carried me upstairs to my bed and we just about made it.

He sat with me through the seizure and got me some pain relief and got me comfy in bed and put on Chicago Fire as something to watch and to distract me. I've spent most of today sleeping and resting. Tired out from yesterday's and today's seizure. It had to describe the huge toll seizures put on the body; especially when you add hypermobile joints into the mix.

I just feel so lucky that Dad was with me otherwise I would have had to have had my seizure in the kitchen on the tiled floor - last time that happened I cracked my head open and that's not something I wish to repeat. I'm also grateful that I wasn't alone during my seizure. I really don't; like having seizures when I'm alone as I worry so much about complications like breathing difficulties (something that's happened a few times) and also having no one to time the seizure or having someone there to give me my medication or help me sit myself up and get me somewhere safe and comfortable as my muscles are either too weak or in too much spasm for me to be able to manoeuvre myself.

In an ideal world I would like to have something like a Care Link alarm which I can press when I'm alone and feel a seizure coming on so I can have someone on the end of the line to nothings like time the seizure, ask me if I'm in need of any assistance or arrange things like carers coming out to me or an ambulance if one is needed. Also in an ideal would I would like more carers being there to help me and make me feel safer as my seizures are so frequent. But sadly local adult social care aren't coming on board and don't see me as having a "real" illness*. I'm doing the best I can in what I can afford in terms of care but otherwise myself and my care agency agree that I need more. We're trying hard but my Gp is stating that social care matters are nothing to do with him. My care agency's nurse is looking into Continuing Health Assessments trying to care care through he NHS rather than social care but we're struggling to get clinicians to engage and I've started to lose my faith in the system that is meant to care. Also in an ideal world an Assistance Dog would be brilliant and would give me much more assurance and independence but current organisations that provide assistance dogs are closed to new applicants and we don't have a dog of our own to get help will official training so that door is closed too.   

It's not like I'm wanting carers to take me out every other day. I just want to feel safe, and have help with the things i struggle to do independently.

I'm speaking out as I want people to know how stuck people with disabilities can become in getting their basic needs met and how much we have to sometimes fight for this to happen, especially young disabled people and those with particular illnesses and the injustice in a system that is meant to care.

* see post about my appointment with my GP entitled 'A Frustrating Appointment' - click here to read it.

Recovering - 17.02.2018

I've had an okay day today; nothing special.

I'm currently recovering from a seizure when this quote popped up on on my Instagram.

Sometimes I feel completely defeated by my illness. I get sick and tired of being sick and tired. 

I'm feeling much better than I did 3 hours ago.

It was just a normal evening. We have family over and we was haiving a film night when I started having clusters of myoclonic seizures and I felt my aura come on. Dad got me upstairs but I didn't;t quite make it to my bed. Instead my brain decided the landing would be a good place to have a seizure instead. For half-an-hour I swung between tonic-clonic seizures and unconscious full body myoclonic spasms. Dad kept getting me to squeeze my finger to check how conscious I was. Even I came round still spasming and Dad got me my medication, administering it to me. I'd lost all use of my muscles so Dad scooped me up and carried me to my bed. He pick on Chicago Fire to keep me company and as a distraction and kept popping in to check on me. He's just come to give me my night time meds and I felt the need to write a blog post. My muscles are still weak and I'm still a bit brain fogged so typing this is a little frustrating but "At the end of the day we can endure more than we think we can." - Frida Kahlo

For now I must be patient, let my body recover and rest.

Migraines

So I thought I'd write a post about Migraines today as I'm recovering from one currently. Thank goodness for Sumapriptan and Cyclizine and pain relief meds and naps!

Stickman Communication © by Hannah Ensor 

I have a form of Migraines called Hemiplegic Migraines.

"What is hemiplegic migraine?Hemiplegic migraine is referred to as a “migraine variant”. The word hemiplegic simply means paralysis on one side of the body. A person with hemiplegic migraine will experience a temporary weakness on one side of their body as part of their migraine attack. This can involve the face, arm or leg and be accompanied by numbness, or pins and needles. The person may experience speech difficulties, vision problems or confusion. This can be a frightening experience for the individual as these symptoms are similar to those of a stroke. This weakness may last from one hour to several days, but usually it goes within 24 hours. The head pain associated with migraine typically follows the weakness, but the headache may precede it or be absent." - The Migraine Trust

I usually get a pre-migraine headache or warning, which is when I take my Sumatriptan which is a migraine medication. Hemiplegic Migraines can be quite scary, both for me an other people. I hate loosing control of my body and speech and the pain can become unbearable at times - every tiny movement of my body is like a huge stab and I throw up (sorry TMI!) and the smallest noise or glimpse of light is horrendous. I've sort-of gotten use to attacks now, and have a good management plan though I'll never grow for of them that's of sure!

My Migraine go-to's are:

• Bed
• Forehead cooling pads
• Darkness - either wearing tinted lenses or an eye mask. My Dad also installed a dimmer switch in my room so I can have better control of the lighting.
• Medication including pain relief, anti-sickness and Sumatriptan
• A sick bowl *yuck*
• Lots of pillows to hold me in place, esp with my muscle weakness I find it hard to hold myself in a comfy position as I'm a bit floppy
• My Stickman Communications © cards
• Ear defenders to keep things nice and quiet
• A tumbler of juice to ensure I'm topped up with fluids

Now to just to rest up and recover!

© Migraine Action

Migraine Facts:

• 1 in 7 people suffer from Migraines
• People with Migraines experience on average of 13 attacks each year.
• A migraine can last for between 4 and 72 hours.
• Migraine affects twice as many women as they do men.
• There is no cure for migraines, only management of attacks.
• The exact cause of migraines is unknown, although they're thought to be the result of temporary changes in the chemicals, nerves and blood vessels in the brain.
• There are many possible migraine triggers that have been suggested, including hormonal, emotional, physical, dietary, environmental and medicinal factors.
• There are many different types of migraines.

Useful Links:

• https://www.migrainetrust.org
• http://www.migraine.org.uk
• http://www.migraineart.org.uk/
• https://www.nhs.uk/conditions/migraine/
• https://www.brainandspine.org.uk/migraine

Parliament Petition - 'Improve Availability of NHS Services for FND Sufferers'

https://petition.parliament.uk/petitions/200007

*"I have FND (Functional Neurological Disorder) - this is where the brain messaging system is impaired and doesn't;t function properly 'the hardware (body) works, but the software (brain) doesn't - it is such a debilitating illness and can be as debilitating as other neurological illnesses such as MS and Parkinson's. My symptoms affects me 24/7/365 without a break. Far too often clinicians don't see FND as a diagnosis but simply as just a name for medically unexplained symptoms, or even that people like me aren't really ill at all. It took me 4 years to get to see a specialist neurologist in London who specialises in FND. Local "care" is non existent. I have to pay for carers because my illness is seen as non existent and I am desperate. Currently I'm waiting for funding for a bed in a specialist neurology rehab centre in Leeds - one of few specialist services in the country and this centre only has 4 beds for out-of-area patients like myself. Far too often clinicians have never heard of FND and sometimes are unwilling to listen to patients when we try to educate them about FND; when we try to help them to help us. As it's the brain that s affected there are a multitude of systems in the body so it is a complex condition to treat, especially when it isn't even seen as an illness in it's own right. My GP has to justify my prescriptions for an illness that I don't have but without those medications I would be left is a worsened state of suffering. I have daily seizures, my muscles are often in chronic spasm, my mobility is impaired, my bowels and bladder are affected, I am in constant pain and experience extreme fatigue amongst other symptoms. FND is a real illness, I know because I life with it every day. Currently there are no NICE guidelines for FND which leave patents and clinicians in the dark when it comes to treatment and there is a distinct lack of specialised care and treatment options. Things have to change. Even if you don't have FND can you please take a few moments to sign this petition for people like myself who are living in the dark with underfunded, insufficient care and treatment."

* This is what I wrote on my Facebook page when i shared the link to the petition 

An okay Day

Yesterday when I got home from my appointment with my GP I treated myself to some new sparkly Dr. Martens - they're an ombré effect of differs colours . I'd been waiting some sparkly Dr. Martens for a while and I wasn't in need of a pick-me-up so it seemed a good tie to treat myself and I rarely do that. Plus it was only £1 for next day delivery so the arrived today and I LOVE them!

This afternoon Dad and I also got out the house for a bit which was nice. I had to drop a water sample off at the GP to test for an infection as i've been having a bit of suspected kidney pain. We then went to get my bus pass renewed so I can try out my anxiety levels with using Phone 'n' Ride to get me home from the TC to try and save me a bit of money. We then went to Next to return some jeans and I ordered another pair to arrive tomorrow. Finger crossed the'll be what I'm after as I've been wanting some grey jeans for ages and I've just had a string of bad luck trying to attain a pair recently.

We then came home and I did some jobs and then it was pancake time (it's Pancake Day, or Shrove Tuesday today by the way and the video is of my crazy Dad making them)!

Then in the evening I went to the second of eight season of a programme called Keys to Freedom (run by Mercy Ministries UK) which my church is running and wore my sparkly docs.

So a bit mundane but it was nice to get out the house for someone that rarely leaves the house for something that's not medical and it was nice for my new docs to arrive too.

A Frustrating Appointment

Through my blog I aim to share my life with chronic illness from my point of view and I don't aim to sugar coat things and I will aim to be honest in my views and how situations leave me feeling, but also to make a record of my life for myself and share this to raise awareness of my life and my illnesses.

Today my care agency nurse and I went to see my GP to get a few things sorted; on the list included: syringes and accessories for my oral meds; funding for carers through Continuing Health Assessments; a prescriptive care plan for ambulance crews and A&E; rescue medication for my seizures; referral to other services who may be able to help me; changing one of my medication to a monthly basis to make things easier for the pharmacy; recent kidney pain; increasing my clonazepam; chasing up my video telemetry referral and funding for a CareLink alarm.

The meeting didn't quite go as I planned. I though having my nurse with me would mean that the list would all get nicely ticked off, but sadly it didn't quite go that way.

One of my main illnesses that is most problematic for me (other than the hypermobility related issues) is Functional Neurological Disorder, or FND for short. My GP started of by stating that FND wasn't actually an illness, but the name given to a set of medically unexplained symptoms. I felt heartbroken, as to me FND IS a REAL illness and one that I live with day-in day-out and never get a break from. He then went on to to tell us that in my notes that clinicians had written in my notes that they don't believe me to be ill and therefore have refused to give me treatment (which kind of explained my experiences in A&E and with the local gastro consultant a while back). I felt angry and upset at the knowledge of this.

My GP went on to explain that because I don't have a diagnosis he has to justify all of the medications he prescribes because on paper he's prescribing medications for a non-existent illness. And because of this he cannot issue me with rescue medication like buccal Midazolam for when my seizures are very bad (what was one thing crossed off our list unfortunately).

Because of this 'non diagnosis' I am unlikely to care social care on board or a CareLink alarm meaning that I must make do with what care I can afford, (which is currently not meeting my needs).

My GP agreed to my nurse arranging a 'Multidisciplinary Meeting' between my care agency, adult social care and himself. Though from past dealings with adult social care I've lost my faith in them.

He also stated that if I had cancer there would be a lot more he could do for me and he kept repeatedly saying how the NHS was underfunded and how we don't live in an areas with much money and resources - sometimes I wonder if my case would be different if I live elsewhere, like in London?

I'll be honest; I got upset in the appointment. I got upset to be told that FND and M.E. aren't "real" illnesses and how some clinicians don't believe me to be ill at all and the reality that I'm most likely not going to get any funding for carers. I was honest with how difficult I'm finding things (and my nurse chipped in a bit too); how much I struggle to simply get washed and dressed and how there's days where all I can simply do is stay in bed. How I struggle with incontinence and can't get properly washed after accidents and how scared I am when I'm home alone in case I fall or have a seizure and have difficulty breathing or chock on my vomit (like I have done in the past). And how come I have symptoms like muscle spasms if there's no illness? And how come there's people like Professor Edwards who specialise in FND? And what about my organic illnesses like Hypermobile Spectrum Disorder and what is he going to do about that? (I'm waiting for Dr Kazkaz, my hypermobility specialist rheumatologist, to write to my GP as that hasn't been done yet since I saw her in November.)

My GP's other advice to me is when I am in A&E and have a dislocation/subluxtion in a joint from a seizure is to leave it out of place as proof so they can give me pain relief. The problem however is that when you live with hypermobile joints they have a habit of correcting themselves most of the time and the advice Dr Kazkaz gave me was to just breathe and let it correct itself and that I don't need medical manipulation to correct dislocated/subluxed joints. So he kind of contradicted the advice I'd been given so I feel a bit stuck with what to do now?

I am however filled with gratitude for my nurse and for being there and giving me a hug when she dropped me off at home an for all that she does for me. She's going to try and format an MDT meeting and also find the order codes for my syringes and accessories so my GP can order them for me.

My last option, which I really don't want to do is find a new GP; one that believes in FND and M.E. and will treat the as REAL illnesses. Despite his flaws he is a good GP and moving GP would be a lot of hassle what with all the medication I'm on and I don't want to risk having a new GP that might want to change things like my medication regime. And my GP and I, we have an honest relationship too which I think is good and healthy. I'm also glad that he's agreed to increase my Clonazepam, so fingers crossed that helps - I need to call my pharmacy to let them know of the increase so they can look out for it.

I also emailed my neurologist, Professor Mark Edwards this evening detailing the meeting I had with my GP and asking him to write to my GP explaining about FND and M.E. I also asked him if he could refer me to an M.E. specialist team to help me with that and about my ambulance and A&E care plan and as well as medication in that if he could write an explanation of what FND and M.E. is and how they are real illnesses. 

I just simply feel defeated and deflated. I'm sick and tired of being sick and tired. I want FND and M.E. to be recognised and understood and treated as REAL illnesses. Hopefully one day that will be the case.

But for now I'll just trust in my nurse and see how things go and wait for a reply from Professor Edwards.

GUEST POST by Annemarie for Feeding Tube Awareness Week

Before I got sick I barely knew anything about feeding tubes and what I did know was from films, TV, magazine articles and pictures and I thought there was just one type of feeding tube (NG tube) but I was very wrong there are different types and so many reasons for needing one .

I have NG feeding tube (Naso-Gastric tube) or my name for them is nose noodle . I have had an NG tubes in for 3 years and never been more than 4/5 hours without one .

I need my tube due to not being able to swallow properly and digestive issues. It’s my life line and is my only source for nutrition, hydration and medication and I wouldn’t be here without it .

My first NG tube

My first tube was inserted on 30^th February 2015.

And I’m not going to lie it was extremely uncomfortable and it was quite painful. I was crying and retching and having a panic attack and it felt like it was taking forever when it only took about 5 minutes. Prior to being admitted I had watched lots of YouTube videos on NG tubes and thought I was ready but it is different watching then having it done. In my experience they do get a little easier each time and now I don’t get upset or panicky and I don’t retch anymore.

Getting used to feeding tubes 

I thought it would be easy tube in pump on feeds go but it isn’t .

You have to start slow and work your way up. My first feed was 50 mls a hour over 20 hours  and slowly we increased the rate. That first admission was 36 days to get my weight and levels up to a safe range.

I got “training" from a nurse from Nutricia to learn how to use the pump, set up the feed, put water and medication down so I could go home with it.

The plan was to get a PEG feeding tube (surgically placed tube in stomach) but for various reasons it keeps getting cancelled.

In 2017 while in hospital after another PEG tube cancellation they finally decided to teach me how to put my NG tubes in myself which is a lot better then having to go and get it changed*; now I change mine every 6-8 weeks or when it needs replacing and have 1 prescribed every other month with my tube feeding supplies. 

Things dont always go right

• I spent a lot of time at A&E because I wasn’t trained or allowed to insert my own tube at that point, so everytime it blocked, accidently pulled out or if I threw it up I had to go to A&E to get a new one.
• Wanting to throw the pump out the window for alarming for no real reason (normally in the middle of the night when you’ve just got to sleep)
• Leaks happen, loose connectors, not putting the syringe in right. You do get wet and sometimes the feeds or Meds does not wash out.
• Sometimes you just can’t reach your feed target and shouldn’t be afraid to talk things over with the dietician.

Its not the end of the world getting a feeding tube like I thought to begin with and you can put your pump in your bag and do anything you want to do. Have tube will travel 

The online tubie community is lovely and supportive and friendly whether your a newbie tubie or not and have tips and tricks that even the nurses don’t know.

If your wondering about my bear Jinx I got it from my brother when I first got my nose noodle from the lovely people at www.tubiefriends.com

A real good awareness website is www.feedingtubeawareness.org/

*It can be dangerous to insert a NG tube without being shown how to by a healthcare professional. 

Pain Clinic - Thursday 8th Feb 2018

So today was my appointment with the Pain Clinic, as customary TASL was running late pacing me up, but without them I'd be pretty stuck (as I will go onto later).

The appointment itself was the usual wishy-washy care I've come to accept from local the local pain clinic which is contracted out to a private company, but its an NHS provided service. We just filled out a bunch of pain score questionnaires today. The problem I find with the pain clinic is that they're not targeted enough and they're too broad spectrum they just deal with paint don't quite seem to get chronic pain which is where I find the questionnaires a pretty pointless exercise.plus appointments are only half-hour slots so you don't don't really get the chance to get down into the nitty-gritty parts of dealing with your pain as by the time you've arrived and settled in and filled them in on things you hardly get started on the pain management teaching skills.

I've asked my rheumatologist Dr Kazkaz if she can recommend a pain management clinic that I can attend until I'm well enough for the programme at Stanmore and I'm going to ask my neurologist professor Edward the same. I just feel that there's something better out there more suited of me and my needs and speciality.

Anyway, thankfully I was only waiting about 45 minutes for TASL to take me home which is a record for them. Maybe my complaint to them helped, or maybe it was my explanation on the phone that I have prolific seizures and suffer from incontinance that promted them to get me home ASAP? Anyway, it beats the 4 hour wait I've had in the past. Another positive is that one of my favourite crew members R was also there to take me home. Back to why I TASL is so essential for me - on the way home I felt my seizures coming on; my aura started any so did my myoclonic seizures. I managed to asked them to pull over and my favourite R who was driving hoped out and got me off the seat and onto the stretcher. I have a double crew - one person to drive and another to sit with me in the back incase anything should happen. Once I was on the stretcher my seizures worsened and I had a few Tonic-Clonic seizures. Both crew members stayed with me; trying to keep me conscious and bring me round. R had hold of my hand and kept getting me to squeeze it to check I was still with him. He knew from my tales of A&E and from previous treks with him to A&E how much I loath the place. After a while the decision was made that R would stay with me on the stretcher and the other crew member would drive home. I just prayed that that we wouldn't;t divert to A&E, especially after last time. When we got back to my house I was still having seizures and we spent a while just in the back of the ambulance trying to work out what to do. Thankfully Mandy my step-mum was home. We decide that I should take some of my oral diazepam and then we had the issue of how to get me off the stretcher and into the house. R decided to scoop me up and carry me in, why they didn't opt for using the stretcher is anyone's guess. But we got inside okay (and this wasn't;t the first time R has had to scoop me up and carry me). Even in the house the crew stayed with me for a while; still trying to keep me conscious. After a while my seizures started to ease off so Mandy said that she could take over and keep and eye on me. I was exhausted by this point as it'd been about half an hour of seizure activity so I just laid on the sofa; Mandy and put my heat pad on me and put some blankets over me and I put and audiobook on and read a couple of letters that the postman had delivered that day.

Sadly R is leavign TASL for another job so I won't be seeing him anymore which I feel sad about, but he said that he'd miss some of him regular patients like me (despite the trouble I cause him!).

Today I am filled with gratitude for:

• My TASL crew, esp R for looking after me and going about and beyond their role and staying with me for longer than just the job in hand
• Letters from my pen friends 
• Medication which helps ease my seizures, pain and other symptoms
• Having family who look after me and help me out from Mandy dealing with my seizures to Dad washing my hair for me this evening 
• Being able to contact my specialists in London
• Having a home where I can rest, recharge and relax

"Invisible" - by Lisa Walters

I've just come across the beautiful spoken word poem via Instagram ad it's one I could relate to so much and I wanted to share it wth you. Hope you enjoy it as much as I did...

Send a Card to a Friend Day - 7th Feb 2018

Today is 'Send a Card to a Friend Day' a quirky event that I came across. Although I regularly send letters to pen pals Today I sat down and wrote some cards out to friends who I don't regularly write to to say hello and let them know that they're in my thoughts and to send them gratitude for being in my life in some way shape or form.

GUEST Post by Nicole for Feeding Tube Awareness Week 2018

Today marks the start of feeding tube awareness week. 

I've lived with an NG (naso-gastric) feeding tube for the past nearly 3 years. An NG tube goes into your nose, past your throat, down your esophagus and into your stomach. 

Many reasons exist that in turn may result in someone requiring a feeding tube. The condition which results in my need for a feeding tube is called psychosomatic/functional vomiting, what this means is I cannot keep food down and most liquids as when I swallow most things my brain sends the wrong signals to my stomach, instead of telling the stomach to digest food my brain tells my stomach that what I've swallowed is harmful and to get rid of it. 

Having a feeding tube isn't easy, it's really quite difficult at times. With a nasal tube one of the biggest issues is the stares from other people as it's not the norm to have a tube on your face, stares from people can often result in feelings of insecurity, embarrassment and upset. However, feeding tubes don't have to hold you back. At the beginning of last year I was at a low point regarding my self esteem. I felt very down about having a feeding tube and it was really starting to affect me. April last year I entered a prestigious beauty pageant in the UK, not thinking I'd get anywhere with it. I was gobsmacked to receive notice that I'd been selected as a grand finalist to compete as one of 15 girls aged 19-29, representing Scotland at the final. I went on to compete last March. I felt rather nervous about competing with a feeding tube, unsure of the reactions I'd get however on stepping on the stage my confidence grew massively and I rocked it! It was truly the confidence boost I needed and since then I've never looked back. 

I think it's all about how you view having a feeding tube. Before I viewed it very negatively and in a lot of ways I felt like it held me back. Since starting to compete in beauty pageants my views have very much changed. I now see it as something positive in a lot of ways, I don't mean I want a tube I more mean I view it as something that helps me along the way. Without it I really struggle. I don't retain proper nutrition and therefore struggle with exhaustion, body heaviness, irritability, negative mindset, difficulty concentrating. I've trialled 2 separate occasions of 10 weeks each without enteral feeding, with the latest one being last year. It was awful! In the month of July last year I spent 26/31 days either inpatient in hospital for my vomiting or attending Accident and Emergency, the remaining 5 days I spent in bed. I definitely don't want a tube but I want the positives that come alongside having a tube. A feeding tube helps give me some sort of quality of life that exists out with a hospital setting or the 4 walls of my bedroom and it also allows me to do more of the "normal" things that any 24 year old does. 

I do still live in hope that one day I will be able to look back upon this as some sort of nightmare that's now over and I'll be able to sustain myself nutritionally via oral eating.