Monday 26 February 2018

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?

Beat"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

Beat's YouthLine Details are:
Telephone: 0808 801 0711

Beat - EDAW
Beat - Tips for Spotting Eating Disorders
Beat - Early intervention 

Saturday 24 February 2018

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

Friday 23 February 2018

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.

Thursday 22 February 2018

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.

Wednesday 21 February 2018

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

Sunday 18 February 2018

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.

Saturday 17 February 2018

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.

Thursday 15 February 2018


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:

Tuesday 13 February 2018

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.

Monday 12 February 2018

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.

Thursday 8 February 2018

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 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

Wednesday 7 February 2018

"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.

Tuesday 6 February 2018

What a palaver!

Life when you have a chronic illness life rarely runs smooth. 

This weeks palaver is with my pharmacy. I get my medication delivered on a Friday to start taking them on a Monday morning and I have them sorted into a tray which makes things easier for my memory and medication compliance. (Now I'm wishing that I'd checked my tray on Friday) because on Monday morning I found that instead of 2 Gabapentin tablets 3 times a day I'd been given 1 tablet instead. Grrr! I checked my online prescription and yes it stated 'Gabapentin 2tds*' so I called the pharmacy and explained the issue so they sent the delivery driver to come and collect my tray for amending. At around 4.30pm the pharmacy's delivery driver retured with my medication tray; opening it only to find that no changes to my tray had actually been made! Queue another phone call to the pharmacy who told me it was all in order and the prescription they received from the Drs surgery last week stated 1 Gabapentin tablet 3 times a day. Queue second phone call to the Drs surgery who confirmed that I should have 2 Gabapentin tablets so they sent over another amended prescription electronically to the pharmacy. Then I made the third phone call back to the pharmacy to state that a prescription was being electorally sent over to them with the correct dosage on.

*tds means three times daily

So today (Tuesday) I called the pharmacy to see if they recieved the prescription and to arrange for the medication tray to be picked up for the second time round. Pharmacy stated that no electronic prescription hasn't been received! So I called the Drs surgery again to check that the prescription has been sent, to which it has and the receptionist gave me the barcode for the prescription.

I was supposed to be going out to see a friend who I haven't seen in a while today but instead I'm eating around for the delivery driver to collect my medication tray! (Annoyed doesn't cover it.)

So when the delivery driver arrives I have the barcode for the electronic prescription to give to him to pass onto the pharmacy (but hopefully they will have it by now).

I switched to this pharmacy as my previous pharmacy was a bit of a nightmare when it came to my controlled drugs, but apart from the odd hiccup this pharmacy has been relatively okay.

Hopefully the pharmacy driver won't be too long now to come and collect my tray and they pharmacy are able to amend my Gabapentin tablets so I can get off to my friend's house.

I'm writing this post as I wanted to share that life with chronic illness rarely runs smoothly, and all sorts of things can get in the way of our lives whether it be pharmacy errors, symptoms, equipment going wrong etc. 

Despite the problems I'm having I'm am feeling gratitude for:

  • Pharmacy home delivery service
  • That I have at least some Gabapentin to keep my symptoms at an okay level
  • Having a day off from the TC and hopefully getting to see my friend at some point
*** UPDATE ***

Step-mum came home to take over the 'waiting for the pharmacy shift' so I was able to got out for coffee with my friend.

Pharmacy never turned up (well, they claimed they did but someone was in the house the whole time and we never noticed them). Pharmacy said to borrow tablets from other compartments in my tray so I get my proper dose and need to drop my tray in tomorrow morning when I'm out with my carer so it can be amended then.

Saturday 3 February 2018

Follow on from my last post... (Third A&E admission of the year)

The problems with A&E...

Unfortunately my experience wasn't the first time I'd received poor "care" in A&E and unfortunately and ever increasingly my "care" is getting worse. Usually the paramedic crews treat my seizures and other needs well but in A&E my "care" goes downhill.

Often you are waiting hours for pain relief and other medications and once the Dr has come the nurses then take a while to then bring the prescribed medication to you.

Call bells are often either ignored completely or take an age to be responded to. I use the call bell to communicate with the staff for things such as to let them know my pain is worsening, that my symptoms are changing, or to let them know that I'm going to have a seizure or that I urgently need the toilet.

Often the staff are to busy to take the time to assist me with walking to the toilet so they just bring a bed pan or the commode. Occasionally the commode is brought in but then staff leave making the assumption that I can get on t myself so I'm left stranded on the bed.

I live with chronic pain; sometime very high levels of pain, but I've learnt that shouting/screaming/crying does nothing to ease the pain, so often when I'm in A&E in high levels of pain I just sit there breathing through it distracting myself with some music or and audiobook. Just because I don't present like I'm in pain does't mean I'm not in pain.

A big issue I've found and a nurse once agreed with me on this is that when an older person comes into the department it is expected that they will come in with a number of needs/complexities. But when a young person like myself gets admitted those needs aren't assumed. For example being a falls risk, or a pressure sore risk or needing assistance with personal care and moving and handling.

I have in the past been left hours in wet through clothes due to incontinence waiting for someone to help get me cleaned up and into dry clothes.

There is also a distinct lack of observation in A&E. Each time I'm there not once does a member of staff 'pop in' just to check on you.

Another big issue aside thank lack of understanding of complexities is meeting the needs of those complexities. For example myself coming into A&E 'seizures' is written on the board but what isn't seen is how with my hypermobility is that I will have dislocated at least one joint as a result and be in pain from that but also how my pain levels from the seizure are exerted but my neurological disorder as my brain is unable to accurately understand pain levels so it just on fun on pain mode.

I've also found a lack of understanding of my illnesses, which is fair; it's an A&E department in a non-specialising hospital (meaning that they have very few department that deal with specialised things - they don't even care for stroke patients). But its the lack of willingness from the A&E staff to listen to me when I try to explain my illnesses to the to help them get a better grasp of what I am experiencing and therefore understand better how to treat me and come up with the best plan of action. Sure they're pressed for time, but surely when they're with a patient they should be willing to give that paitent their time and with patients like myself we know our bodies better than that do - we're not demanding that you do what we say and we're not drug addicts when we suggest IV meds or particular medications, we're just trying to help you to help us.

Friday 2 February 2018

Third A&E admission of the year

Yesterday I had my third and I will sum up the experience in one word: horrendous. 

I was at the TC at the time and I felt a seizure coming on. I tired to make it to sofa but didn't quite make it and fell to the floor hitting my head and hip on the way down. A prolonged status seizure then ensued so a call to 999 was made. 

Often the paramedic crew that arrive have met me at lest once and so will know what I need and will give me IV diazepam to bring me out of the seizures. This paramedic crew had come from Scunthorpe and so had never met me or know my medical history or needs. The minute they heard 'non-epileptic seizures' they decided on 'no course of action' other than the take my vials (blood glucose levels, blood pressure, temperature, pulse and oxygen saturation levels). In my semi conscious moments I desperately tried to communicate about my medical booklet which has a paramedic care plan in stating that I need IV diazepam; this was eventually found but non of the stated care plan was followed. 

By this point I was gaining a little more consciousness but I was still having tonic-clonic seizures and constant myoclonic seizures.

By the time we got to the A&E department it only went downhill from there. 

I was in a little cubicle in the back of beyond. I was in and out of tonic-clonic seizures and was having constant myoclonic seizures but there was no one doing any form of observation on me. (Even though I'm unconscious during my tonic-clonic seizures I know from my body when I've had once - firstly because I can feel it coming on (called an aura) and secondly because I have lost a piece of time and in my whole body aches and is is spasm). When the nurse came to collect a piece of equipment I managed to verbally say to her that I was still having seizures and that I was in a lot of pain; her response was to tell me "no, you're not having seizures" (?!).

Upset, and frustrated at a) being in A&E again and b) my so far "care" I called my care agency's nurse as my Dad and step-mum where both at work. Praying my nurse would pick up she did and I just burst into tears. She asked me where I was an I managed to say "in A&E" - she's fully aware of my previous poor care experiences in A&E and the issues I have when I'm there. She arranged for one of my carers to come and sit with me to keep me company, advocate for me and give me assistance with anything I needed help with and she stayed on the phone with me until the carer arrived.

I waited in pain for the Dr to come, I was told I couldn't have my own pain relief until I saw the Dr but I was in to much pain to take that advice so I took some of my own co-codamol.

The Dr was as helpful as a chocolate teapot. She barely listed to a word I said when I tried to explain my illnesses to her and the treatments that usually help me when I've been in a similar situation. Plus the fact that I'm waiting for tests to rule out or rule in epilepsy in the hope that she would take my seizures more seriously. The pain relief she offered me for: a subluxed hip, two dislocated shoulders and a throbbing head was... two measly paracetamol tablets to which I point blankly told her was absolute ridiculous. She refused to give me any IV medications despite the fact that its in my notes that IV is the preferred method of drug administration for me in acute settings due to my slow absorption of oral medication. She refused my request for any stronger pain relief (despite the fact that at home I have oramorph - I had some one me thankfully which I took; I did ask if I could take to which she said "if you want to"); she refused my very polite request for IV anti-sickness (despite being sick from the pain I was in) and IV diazepam to bring me out of the the seizures I was experiencing; I explained to her that I know my body and when my seizures get to this point the only thing that will bring me out of this episode would be IV diazepam, and said that they would "monitor me" - but not once did anyone actually come and do any monitoring and each tonic-clonic seizure I had and my carer reported to the nurses and not once did anyone come then either. 

After a while of ongoing seizures and pain the senior consultant came in. He basically said that I was never to have IV diazepam again in this A&E department and that he would be putting this in my records. I challenged this and asked why and he said "the risk of respiratory distress was too high" I replied that I had had IV diazepam numerous times and never encountered a problem. I then challenged him and said "is this because my seizures are non-epileptic" to which he replied "yes".

Far too often I have found that non-epilecpitc seizures are see as 'pseudoseizures' and Functional Neurological Disorder are seen as a mental health issue rather than a physiological neurological issue and patients are treated lesser than compared to those with epilepsy or other neurological illnesss such as M.S. or Parkinson's (despite the fact that FND can be as debilitating as both of these illnesses). 

I felt like screaming at him and when he left the room I burst into tears. I just wanted the pain and seizures to stopped. My carer just gave me a big hug and comforted me as I cried. I cried out of frustration - I HATE my seizures, I wanted them to stop, I NEEDED them to stop, I was in agony, each myoclonic jerk suxluxed the joint and this this had been going on for hours and it wasn't t going to stop and I needed help and I knew my body more that those Drs. I knew what treatment I needed but they where the ones with he prescription pad and I felt like my pain and distress and and myself was nothing to them.

Eventually they gave in and prescribed me a 5mg diazepam tablet. The nurse that brought it was the ward manager who knew me as my care agency nurse had been in contact with her a few times trying to sort this A&E care plan out. I said to the nurse how I felt and that this tablet wasn't really going to to do much and that normally I have 10mg IV. I expressed my distress and how I felt I had been treated by the Drs that he seen me that time and my concern about this blanket ban on me having IV diazepam as surely I should be assessed on an case-by-case basis? We discussed my need for a prescribed care plan and that I needed my neurologist in London's input on this (so I've got on my to-do list is email him ASAP).

I went home from A&E still having seizures and even today my myoclonic seizures have been worse than usual; the stress from yesterday hadn't helped but I've kept myself topped up with pain relief and diazepam which seems to have helped.

Before yesterday I hated going into A&E, but now I feel like no mater what I am NOT going to allow myself to go through that again. If the paramedics do give me IV diazepam for my status seizures then all I will do is self-discharge myself from A&E - I have (sort of) sufficient pain relief at home and I will have my own bed and I can do what I need to do to be comfortable and my Dad and step-mum are there to care for me. I won't have the distress of A&E; of not being understood or listened to and I will not put myself through that ordeal ever again. I know this probably not the most sensible thing to do but I just can't handle inadequate, ignorant, uneducated care again. 

I've found this post really hard to write; I was going to keep it short and just write that I had a horrendous time in A&E and that the care was non-existent. But I wanted to share my story. To say how poorly treated I was yesterday. (On a side note I'm not surprised our hospital in is special measures; it has been for some time.) 

My gratitude goes out to my carer. She gave me the care that I needed when I needed - something I often wait a long time for as there simply isn't the staffing to do those tasks.

*** NB: all views are my own ***