Monday, 12 November 2018

One Second Every Day: November - Week 1 & 2

  • Thursday 1st November - Quiet day in the house. I didn't really get up to much. I summed up the energy to have a bath and used a Lush bubble bar that I hadn't bought before and it smelt amazing. I was pretty wiped out after my bath so I just rested. I did a few admin things like booking patient transport for my Dietician appointment and for my appointment in December for the Pain Management programme. I'm making good progress with my crochet blanket which feels good.
  • Friday 2nd November - I had my appointment with orthotics today at the hospital to get fitted  out for a knee brace which will stabilise and support my lax knee which likes to slips of places which should hopefully reduce my falls.My right knee is the worst so if that helps the lady said they could get me one for my left knee too. She asked me what sort of dislocations I have so she could find the best brace for me and she showed me a few possibilities in a catalogue. It will be a hinged on so I will be able to bend my knee as I thought It would keep my leg straight which would be a total inconvenience when trying to walk and when i'm sat in my wheelchair! I'm not sure yet what brace Im getting as she was going to contact the company to ensure I had the right brace and that it was latex free, which I'm guessing it will be as I can't see a need for latex in a knee brace, but then I had to obtain my own wrist braces as the hospital couldn't get me a guaranteed latex free ones. I then made a follow up appointment to collect an fit my brace but I'm going to ave to wait until next year as they're so busy which was a bit frustrating, but understandable. I then got home and was exhausted so I had a lay down on the sofa and accidentally nodded off. I spent the rest of the evening crocheting and watching TV.
  • Saturday 3rd November - My postcard that Dad and Mandy  sent me from Vatican City arrived today. I had my usual Saturday lay-in and just spent the day watching TV and crocheting and resting.
  • Sunday 4th November - Made it to church this morning. There's something that's been weighing heavily on my mind and heart so after church had finished I spoke with a couple of friends at church about it which helped. I got home and was pretty tired so I had a nap after getting something to eat. My nails where also in separate need of sorting out as my Shellac needed taking off but I just hadn't;t gotten round to having the energy to doing it. I did want to reapply my Shellac but two of my nails had spilt really badly and i felt gutted as whilst I had my Shellac on they grew really nicely so I put some nail strengthener polish on and will Shellac them when they've grown a bit.
  • Monday 5th November - Had a nice quite day in to myself so had the opportunity to have extended pj wearing without getting moaned at to get dressed. My energy levels where okay-ish today so I took the opportunity to catch up on my crochet and crack on with it as feeling the pressure to get it made despite making good progress with it so far.
  • Tuesday 6th November - I had my second appointment with my support workers from L&H Homes and we made good progress. They contacted the CCG to find out about my special funding request for my rehab in Leeds as the referral was made November last year and I still haven't heard anything about it. hey also go on the phone to adult social care. Initially the lady on the phone was extremely rude which shocked my support worker who was new to the role and she said hat in all her 25 years of working she's never been spoken to another professional like that, but then my other support worker called up and got the same lady which she'd had run-ins before with and the lady on the phone changed her tune and hopefully I'll be getting a CareLink finally after so many years of requesting it and also an occupational therapy assessment. Social Care don't deal with Continuing Health Care assessments so they've taken down the details of some of the people in my care team like my district nursing team, but I feel ultimately that (when they get round to organising themselves!) it will be the Complex Care Team who will deal with that. We also made plans to go to the gym next week for an induction to use the toning suite. When they left I called the sectary of the Complex Care Team only to find she had left and the manger was suppose to call me but didn't. I then got myself a quick something to eat and then TASL (patient transport) turned up to take me to my appointment wit the Dietician. It was a dietician I hadn't met before but she was lovely and we spoke for ages and it was a really helpful and positive and productive appointment. The Low FODMAP diet is going well and I said I've had to take the reintroduction slower and she recommend adding some seeds into my diet and gave me some liquid nutrition recipes for when I'm struggling with solid foods and in the new year I'm going to start back having some wheat and gluten in my diet to be tested for celiac so I'm not looking forward to that as when I tried to reintroduce it it didn't agree with me, but I'll give it a go. I also spoke with her about how nutrition plays a part in my dysautonomia and how i'm trying to have smaller meals and have more salt and she's going to ask my GP if he could possibly prescribe me electrolyte solutions and also let him know about the celiac food trial.  When I finished with the dietician she called patient transport to collect me She made me a coffee and sat with me whilst we waited for transport and I explained if there was a wait for transport I was to be referred tot he discharge lounge. Thankfully the crew that brought me turned up before I had time to finish my coffee (but they let me finish it). The appointment was only meant to be half an hour so the transport crew that brought me had been and gone to collect me and hd gone to the discharge long to see if I was there too. I've worked out a system of how to get patient transport to pick me up wit having t wait too long and since I put in complaint about the wait and them putting in a care plan to say I go to the discharge lounge the I have nurses around I've barely had to wait at all for transport and I've all the crew members I've ever come across have been brilliant. When I got home I also called my care agency's nurse for a catch-up and to let her know about the Complex Care Team as she's been dealing with that side of things for me a lot so she's going to chase that up and also my neurologist as I haven't had a reply to him from the email I sent him a while back. 
  • Wednesday 7th November - Got and abrupt wake up. Set my alarm for 10am to get up and get my breakfast fr my carer to come at 11am. Instead my carer turned up at 10am and the office didn't tell me so it took me a while to get my body functioning so my hope to pop out went out the window. I also got a call from Care Link and they're going to come and install the system tomorrow. I've been waiting years for that to happen and it will give me some peace of mind for those 'just in case' emergencies, hopefully I will rarely need it. My Amazon order also came so I've got 3 more people's Christmas presents sorted, though for one person I'm going to try and handmade a little something. I had a bit of a letter writing session and in my usual fashion I had stationary chaos on my bedroom floor. I didn't get round to doing much crochet as the afternoon just went so quickly. In the evening I had my bible course at church. I got home and was shattered so I had a tidy of my bedroom and did a few things on my blog and now I'm just going to get off to bed.
  • Thursday 8th November - Carelink came this morning to install the system. It's been really cold today so I've been hugging my heat pad. Mid afternoon I had my ½ hour care call so we went to the Post Office. I gave my carer a bit of a scare when I fell to the floor. I was exhausted when I got back and ended up having a sleep on the sofa. After tea I finished off my crochet and now I'm heading to bed.
  • Friday 9th November - Not such a good day seizure wise. Woke up not feeling 100% and struggled to get out of bed and then had ⅔ tonic-clonic seizures at breakfast. I then just spent the day on the sofa trying to get a bit of my crochet done. Around half 2 the home library lady came with some more audiobooks and we had a nice chat. Volunteers and services like that are a bit of a lifeline when you're more-or-less housebound as a0 you're still able to access services like the library in an around-about way and the library I have a link with someone at the library who's good at getting new audiobooks in so I've requested two that I've found are on Netflix and I've found out where originally in book form - 'Pretty Little Liars' and 'The Haunting Of Hill House' and b) it's social company and I always have good chats with the volunteer that visits me. In the evening after packing the shopping away I felt another seizure coming on so I just got myself on the kitchen floor. This was about 4.45/4.50pm and thinking Dad would be home soon I didn't press my CareLink. At 6.35pm approx I started to come round from my seizures. Dad was home. My jerking had triggered my CareLink as I was wearing my alarm on my wrist but Dad was around to tell them he was handling things. I'm' not sure what time Dad got home so I have no clue how long I was on the floor alone for. I'm unsure in future wether to press my CareLink just in case, even if Dad is just 5 minutes away from home or an hour from home as it's so unpredictable when he will be home? I just don't want to feel a nuisance to them, especially as I have so many falls and daily seizures. But then on the other hand if they document all the calls it can be evidence. When I cam round a bit more Dad got me some pain relief and put my tea on and helped me to the sofa. I was still in a lot of spasm after eating and I desirably tried not to throw my tea at the wall(!) so Dad got me some diazepam. We watched a film which was nice and a good distraction. Mandy was looking at my wrist alarm and accidentally set it off, oops! At least now its peace of mind to know help is there when I'm alone and hopefully with time I will get the funding for more care. Anyway, I'm exhausted and in pain so I'm going to settle in bed with some Netflix and hopefully the pain relief I've just had will help so I can get comfortable.
  • Saturday 10th November - I had a nice lay in this morning and found it hard to get up. I woke up feeling more tired than I went to bed. Dad and Mandy had gone out for the day so I was able to have extended pj wearing and then I managed to get washed and dressed before Beth my step-sister popped round briefly to drop off some clothes that she needed Mandy to mend. I then 
  • Sunday 11th November - I accidentally overslept this morning but still managed to make it to church. The aversion was spent not doing much, mostly just TV and crochet.

Gratitude List...
  • My family, support workers and carers
  • The NHS, NHS staff and Patient Transport and CareLink
  • Making good progress with my crochet
  • My church, faith and church friends
  • Having okay and good days and getting through my bad days

Sunday, 11 November 2018

GUEST POST & POEM by Janice about her journey with Anorexia and giving hope and awaeness

I cry myself to sleep most nights not knowing what to do, but then I stop and think a while the words "I need you". My mother often tells me she needs me by her side back to the girl I was with my bubbly happy smile. I often stop and watch a while the normal world I see, and think of all the reasons why normal don't suit me. Why am I the way I am, why won't it go away, I hope and pray that someday soon the pain will go away. But all I can do is wait and see just what my future holds and take each day, each hour, each step each single thing life throws. I hope someday that I can say the demons have now gone, but until the time that this day comes i sure will battle on.
I have battled anorexia, depression, suicidal thoughts for years now. But I'm trying my best to recover, to live a "normal" life. I was doing my nursing degree when I became very ill with anorexia and had to be hospitalised. Since then I've had many admissions with my last being told that they didn't know how I survived. My organs were shutting down, I was totally bed bound with a nurse sitting at my bed 24/7 in case my health deteriorated as I was at a high risk of cardiac arrest. But thankfully my body fought back. I began to get stronger and could see a glimmer of hope. 

I'm a lot better now but I can't say I'm fully recovered as recovery is a very long journey but I'm out of hospital living my life to the best of my ability and fighting the demons in my head every day. 

To anyone who thinks anorexia is a lifestyle choice, a fad I can say it most definitely is not ! It is a potentially fatal mental illness that tortures you every second of every day it takes over your brain tells you your fat, you don't deserve food and it eats away at you until your are too mentally and physically ill to fight back and it won't stop until its consumed every part of you. It would like all of you and it won't stop until it gets what it wants! 

For anyone who is suffering from an eating disorder I urge you to get help right now no matter what weight/age/gender you are. You don't have to be skeletal to suffer from an eating disorder. One thing I will also say is anorexia is not glamorous you think you will lose weight and be beautiful but your not your only an empty shell consumed by the demons. With anorexia you feel like you are in control, losing weight is something your good at you get happy every time that number goes down but believe me that happiness is short lived and no matter how low the number is it will never be low enough, you will never say ok I can stop now because by this stage anorexia is the one controlling you!!

Wednesday, 7 November 2018

One Second Every Day: October - Week 4

  • Monday 22nd October - Had a nice quite day in. Had a lay in in the morning as still not sleeping well. Flop was very talkative today and he's enjoying the greens leafy bits off the carrots from the garden. Leg spasms have been playing up today so when I had my evening care visit I decided to make a quick trip out to Tesco for the short walk as I spend most of my day on the sofa cooped up in the house and I picked up some flowers and some mini plants for my bedroom.
  • Tuesday 23rd October - I'm not having a good day health wise. My headaches have been getting worse and so has my muscle pain and spasms. My carer suggested making an appointment to see the GP and I managed to get one this afternoon. It was a struggle to get there and I crashed out when I got home. There wasn't much she could do except give me another prescription for my anti-sickness meds and she also ordered a head and neck CT and will go from there once the results of that are in. She couldn't;t increase my Baclofen (muscle relaxant med) as I'm already on a high dose. I managed today delisted not feeling great to get a couple of squares made and sew onto my blanket. I now have 99 squares sewn on and 5 squares ready to be sewn on once I have more made.
  • Wednesday 24th October - Still not sleeping well. I'm struggling to get off to bed and then I'm waking up in the early hours and can't get back off to sleep so I gave myself a lay-in. I've been really struggling with my mood, veering into depression and reached out to mental health services this morning. My care co-ordinaotor want available so I spoke with someone else and hopefully my care co-ordinator will call me tomorrow. When my carer came we nipped off to the co-op to post some letters and I also spotted some dairy free ice cream and fancied jelly and ice cream which is a comfort food of mine. Unfortunately things then went a bit pear shaped. I had a seizure in the bath and then a couple more on my bed. When we then got downstairs I went into status seizures so my carer called for an ambulance. The crew was too busy to try and treat me at home so off to A&E we went. As usual A&E where pretty rubbish at dealing with my pain and understanding my illnesses. Due to the pain my myoclonic seizures where playing up and with my shoulder joint being so lax due to my hypermobility is was very painful as it just kept slipping in and out and trapping a nerve. Thankfully this time they allowed me to stay on the Entonx for longer  thank last time I was in A&E which helped but they just ended up giving me oramorph which I have at home anyway so it felt a bit pointless despite me trying to help the Dr out recommending what’s helped in the past when I’ve been in high levels of pain beyond oramorph. Thankfully I had my Uncle and his girlfriend Holly with me as Dad and Mandy are away and i the end we decided it would be best for me to go home and have my carer come at 7.45pm rather than continue waiting around in A&E as they wasn't doing much. They brought me home and got me something to eat and then my carer came and i had a little bath the get rid of the "hospital yuck" and into my pj's and settled down at home. I distracted myself with a bit more crochet and now I'm about to head off to bed.
  • Thursday 25th October - Had a nice chilled out day and had an almost lay-in. Worried my uncle as I'd put my phone on do not disturb to sleep and I ignore the landline phone as we get so many cold calls so he came rushing round to check I was okay. The rest of the day has been spent just chilling out with Flop, crocheting, writing a couple of letters and watching TV.
  • Friday 26th October - Nice chilled out day. Had a seizure in the morning but it wasn't a major one but I remembered to let my Uncle know. I said bye bye to Flop as he went back home at lunch time. In the afternoon I had an appointment at De Lovely in the village and had a hot stone massage and facial which really helped with my pain. I got back to my Lush order as I'd treated myself to some new bubble bars which I love and they last ages as they can be broken up and I also treated myself to a warming massage bar and a night time moisturiser which was recommend to me. I chilled out for the rest of the day and got some crocheting done and I'm making good progress on the blanket. I put some of my new 'Sleepy' moisturiser on when I put my pj's on and it smells heavily and the scent just keeps on going and it has a little shimmer to it too.
  • Saturday 27th October - Not much going on today. I mostly just spent the day pacing myself through rest and watching TV as I crochet. I recently signed up as a member for Action for M.E. as I've found being members of other organisations linked to my illnesses helpful, especially some the features in the magazines, plus it all helps the organisations and their work, so today my membership pack arrived along with some other bit os snail mail. In the evening Dad and Mandy got back home and they brought me back some postcards. I enjoyed having my own little routine whilst they was away and the independence of having that little routine and being able to do my own thing but I was glad to see them.
  • Sunday 28th October - I woke up feeling not well at all. I was more tired than when I went to be and my whole body ached; not something I wanted before a hospital appointment in London the following day. I basically have sent the whole day curled up in a ball on the sofa with my heat pad, struggling to concentrate much on the TV feeling utterly brain fogged.
  • Monday 29th October - Big early start to the day as I was up at 3.30am ready for Patient Transport to arrive at 5am to take me to UCLH n London for a Gastric Emptying Study (I did try to get the test done locally but I would have been a l-o-n-g wait and I was told I'd get better care in London. I'm glad I didn't get up at 4 am I needed that extra half hour, saying that though the crew was almost an hour late. Thankfully we got there in time, just. It was an uneventful journey there, I mostly just slept on the stretcher and Andy who was in the back with me thankfully liked the heat too so we was nice and toasty warm. I then got to UCLH and we got directions to Nuclear Medicine. I didn't have to wait long before I was called into the scanner room by a lovely and very helpful radiographer. I then ate some not-so-yummy radioactive porridge and I was then helped onto the bed and was wheeled under the scanner and I played there for several hours whilst my stomach emptied. I think must have nodded off under the scanner and I was glad I brought a blanket as it was quite cold in there. Once I was done I was told the results would be sent to my consultant (I did ask to see the pictures but not such luck) whom I'm seeing in February back at UCLH. I then went an got myself a coffee in the cafĂ© and a very lovely lady who was 95 and very spritely and independent came and sat at my table and we chatted and she told me her life story from her job in the war to the plumber repair guy that come to fix her shower. I then called Andy to come and pick me up. The journey home wasn;t as successful. I had about half and hour of seizures, probably because I was tired, a bit too warm, in pain and my stomach was cramping up and my blood sugars where most likely on the low side - all things that singularly can cause seizures in me. Thankfully Andy was brilliant at looking after me. We got home just before 8pm so to was a very long day and I went to bed early.
  • Tuesday 30th October - I had quite a lay in this morning and I got a phone call from L&H asking if I was free that afternoon for them to come round and do the assessment they was going to do last week before I went off to A&E. They came and it was an an initial introduction and then quite a bit of paperwork to get through but hopefully it will lead to me getting a support worker to take me to the gym and also some advocacy with things adult social care and getting a needs assessment with an OT as well as a Continuing Health Care assessment. I then just spent the rest of the day recuperating from yesterday and catching up with my crochet.
  • Wednesday 31st October - Had my Bluebird visit this morning and went to go and get my flu vaccination then my carer dropped me off to see my care co-ordinator to go over some paperwork. When I got home I was pretty exhausted so just crashed on the sofa and rested for the rest of the day.

  • Gratitude List:
    • The NHS
    • Patient Transport service
    • Flop the guinea pig
    • Charities like Action for M.E.
    • My carers and support workers
    • My family

    Thursday, 25 October 2018

    October is Dysautonomia Awareness Month.

    October is Dysautonomia Awareness Month.

    So what is dysautonomia?
    Dysautonomia refers to a disorder in or with the autonomic nervous system. This is responsible for things like heart rate, blood pressure, digestion, kidney function, temperature control and more, basically all the bodily functions that occur without having to consciously things about it and it affects every part of the body.
    "People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, and abnormal heart rates. 
    Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time but there is research bing done."
    Dysautonomia International, 'What is Dysautonomia?' 
    There are several illnesses that are caused by dysautonomia. I don't have any particular dysautonomia disorder but I am affected by dysautonomia due to my M.E. and HSD. I have a low blood pressure and faulty heart rate which leads to dizziness, light headedness and fainting. I also struggle with temperature control, especially feeling cold all the time and finding it difficult to warm up and my digestive system is slowed down too. 

    Although there is no cure there are things that can be done to help manage my dysautonomia I take electrolyte supplements, and I've had to get over my dislike of salt and increase my salt intake and eat smaller meals. The idea behind smaller meals is that the you have a big meal all the blood goes to the digestive system leaving less blood for the rest of the body causing symptoms like dizziness and light headedness. Changing my posture too like when I lie down can also help.

    Tuesday, 23 October 2018

    One Second Every Day: October - Week 3

    So recently with a combination of being more poorly than my usual chronic illness self and little to write about I've fallen out od sync with keep up my weekly journal and 'one second every day' project but I'm trying to catch up with that and restart my journal and get back on track with my blog.
    • Monday 15th October - Quiet day at home. Managed to have a little bath and remembered this time to put the boiler on (it's currently broken so we're keeping it off as despite the radiators being turned off they're heating up) so I had a nice hot bath unlike the shower I had last week where the hot water ran out mid shower! I didn't realise that I had ran out of cream yarn for my crochet blanket so made an order for that and just made circles so I don't fall behind and watched more Pretty Little Liars on Netflix which I'm hooked on at the moment. At the moment my care agency are offering me a free ½ hour call as i'm been feeling a bit low and lonely at home so today I didn't feel up to going to the co-op so instead we took a drive to Tesco and posted a few letters there then came home.
    • Tuesday 16th October - Rigid muscles spasms have been playing me up today. I managed to get breakfast and dressed before they started to play me up but  when they started I could do very little. Thankfully my care supervisor from my care agency came round to do my 3 monthly care plan update and Dennis is amazing and he got me my meds, a tumbler of juice a coffee and made me a sandwich, all things I would have gone without if he hadn't of been there which he said just supports my need for Continuing Health Care as my symptoms are so unpredictable. Eventually they eased and I took a break from the TV to put some letters together as I'm going to the post office tomorrow. 
    • Wednesday 17th October - I had to wake up a bit earlier today as I had my Bluebird call at 10.30am. Tracy came and we headed to the post office and I posted some letters and a parcel and then we headed to Specsavers. Thankfully I had nothing else urgent to do as we was there for over an hour as last week when I had my home eye test I felt pressured into getting my glasses there and then but I wanted to look at what they had in store. I chose some different frames so hopefully I'll be able to get the ones I picked out today. I also got my current glasses adjusted as they where rubbing behind my ear. We was planning on going for coffee afterwards but we was so long in Specsavers Tracy nipped off to get the coffee for me. The reason I had my Bluebird call earlier today was because I had a teleconference meeting with the Royal College of Psychiatry which I am a member of the Child and Adolescent Public Education Board (or CAFPEB for short), so I got a quick sandwhich when I got home and then I've just spent the past few hours in the teleconference. I'm not panning to just chill out as I'm tired and my mind is a bit boggled from the teleconference. I have the the Bible Course at church tonight and I'm hoping I have the confidence to go as I haven't been back to church since the last bible study session where I had a prolonged seizure and ended up leaving in an ambulance so its taken my confidence a huge bashing.
    • Thursday 18th October - Had a nice chilled out day. Got on with some crocheting and making good progress with my blanket accompanied by coffee and Netflix.
    • Friday 19th October - Busy morning getting ready. In the afternoon I had my follow-up appointment with Dr Sally Moorcroft, a private Integrative Medicine Dr I've started seeing. I'm giving it a go and keeping an open mind about it and just seeing if it can help. She's prescribed me some homeopathic/herbal medicines to help with things like my energy levels, muscle spasms and sleep problems. She also found that my neck muscles are very tense which may count for the increase in my Chronic Daily Headaches so when I see her next month I'm also going to have a hot shells massage on my neck and shoulders to see if that helps untense my muscles, the alternatives she suggested to that are something called Bowen therapy or acupuncture. When I got home I had a really bad headache so went to have a nap. I forgot to put my nap app on so needed up oversleeping and waking up around 8.30pm and thinking it was the morning, I must have needed the sleep though.
    • Saturday 20th October - Had a nice chilled out day. When I got up I sorted out my usual meds for the day and also added in my new homeopathic/herbal medicines. Today has just been nice and paced out and I've got quite a lot of squares stitched onto my crochet blanket and I'm making good progress and it's not even November yet. I've also discovered a new game on my iPad which I've become a bit addicted to. I also finally got round to ordering some more nose studs and a Paperchase order as a friend's birthday is coming up and I saw some things when I was on the website that was perfect for another friend for Christmas so very unlike me I have officially started Christmas shopping! To carry on the theme I started making an Amazon Christmas wish list.  I also got some upsetting news that someone I know and was really close to is going to pass away which was really hard hitting. I also did some organising of my medical file and made some markers for future appointments so I know what ones I've been to and which ones I've got coming up.
    • Sunday 21st October - I hardly slept but I got up and ready and made it to church. During the early hours I got a letter typed up so the afternoon was spent putting that letter together and I forgot to pace myself so I got crash point and spent the rest of the day just resting.

    Gratitude list...
    • Dennis for taking the time out of his day to help me out
    • My care agency for offering me a free ½ hour call 
    • My carers
    • Coffee
    • Being able to afford to see Dr Sally
    • My fight to just keep going when the going gets tough (because I have no choice but to fight)

    Wednesday, 17 October 2018

    October is Dyslexia Awareness Month

    So October is Dyslexia Awareness Month. I've had dyslexia all my life, but it took a long time for it to be pick u and diagnosed. I have a very vivid memory of being 4/5years old and struggling with my reading homework which including the word 'what' and I was insistent that the word was pronounced 'w-hat' and my day was desperately trying to get me to say 'what'. 

    Having dyslexia doesn't mean I'm not intelligent - my brain just works a bit differently and gets a bit more scattered than other people's and I think more in pictures rather than words.

    Dyslexia runs in our family - both myself, my brother and my Dad have it.

    I always struggled with reading and spelling. I hated being called out to read aloud in class as people would laugh at my reading aloud ability or dis-ability in my case. What I found most frustrating was I was so bright, when it came to writing our work out my head would be buzzing with ideas of what I wanted to say but putting pen to paper was slow and very difficult and I was always pulled up for not finishing my work or for my spelling errors. Despite my intelligence I was in the bottom set for work so some of the other students that where on my table preferred to pick on me rather than do their work so I didn't;t really enjoy school that much.

    Finally when my dyslexia was picked up, assessed and diagnosed is was almost like a sigh of relief. I quite beating myself up and my IQ was higher than average but for things like reading and writing speak I scored so low it wasn't;t on the chart but other things I scored ver highly on so I was able to work with my strengths. I also got introduced to assistive technology which has been a lifeline and I got a support worker in class as well as 1:1 teaching sessions to help me with the things I found difficult. I also got special arrangements for examinations.

    So what is dyslexia?
    • Dyslexia is one of a family of Specific Learning Difficulties.
    • Many people who have dyslexia have strong visual, creative and problem solving skills.
    • Dyslexia is not linked to intelligence but can make learning difficult.
    • Dyslexia is a life-long condition which has a substantial effect on an individual’s day to day activities and is classed as a disability under the Equality Act 2010.
    • Dyslexia varies from person to person and no two people will have the same set of strengths and weaknesses.
    • It often co-occurs with related conditions, such as dyspraxia, dyscalculia and attention deficit disorder.
    • Dyslexic individuals often have difficulty processing and remembering information.
    - The Dyslexia Association 

    Alongside the dyslexia I also have Scotopic Sensitivity Syndrome, or Irlen Syndrome. Some people have it alongside their dyslexia, others can have it but not have dyslexia. This was picked up long before the dyslexia. Wearing tinted lenses - originally it was green, then blue then purple and it helps 'unscramble' the words on a page and makes it easier to focus. I also have a colour filter on my laptop and phone which does the same thing.

    "Irlen Syndrome (also referred to at times as Meares-Irlen Syndrome, Scotopic Sensitivity Syndrome, and Visual Stress) is a perceptual processing disorder. It is not an optical problem. It is a problem with the brain’s ability to process visual information."
    - Irlen 

    Friday, 12 October 2018

    GUEST POST by Hayley Ann for World Arthritis Day 2018


    Today’s the day, that I not only love; but I hate with that same part of me. Well, let me back up a bit. In October of 2013 I had dislocated my hip, something I was told “That can’t be possible, without an injury.” And “That I was faking just for attention.” When clearly, that wasn’t the case at all. They done X-ray, after X-ray, scan after scan, and had taken more blood than I had EVER seen in my life. Finally, for a man to walk in my room after 3 am on October 16th 2013 and diagnosed me with Juvenile Idiopathic Arthritis. This took OVER 3 weeks of being in the hospital. We (my dad, the doctor, an i) talked for well over two hours about how, and why this went undetected and undiagnosed for so long. He said “I have no idea, it’s been there all along” You see, when I was little I was a very very sick child (constantly having pneumonia, lung and chest infections, and being very prone to being sick) every time, they gave me steroids and my inflammatory markers would drop. I’d go back for a check up after a few days, and my inflammatory markers were down), back to my normal doc (that treated my asthma) several weeks later, and my inflammatory markers were sky high again. 

    You see, every time my inflammatory markers would rise, they’d instantly think it was my lungs or asthma and put me back on steroids (because you know, it worked before!) So therefore no one ever done the digging as for the exact reason why my inflammatory markers were always high. They never put together my knee problems, the inflammatory markers, and the wanting to use my other hand; could be arthritis. Now, I’m not mad at my past doctors for not realizing it, by any means. That’s not what I’m saying at all. What I’m saying is, back in the early 2000’s (or very late 90’s) there wasn’t all of this medical technology around. Okay well, some of it may have been. We just didn’t have access to it in a very small town in Ohio. 

    The doctor came back early the next morning and hooked me up on some medications to help my arthritis, as well as talking more to us now that we had some time to let it sink in. He said that later that day I would need at least one more test. We gladly agreed, because he was one of the only people to believe me and because of that, other doctors now believed me. After that scan (within just 10 minutes of me being back in my hospital room) he walked in to inform me and my parents that I “Passed with flying colors” which was the first time ever, that specific phrase wasn’t so good. I literally did “pass with flying colors” as it came back positive and the screen was lit up with many different colors on different bones and joints in my body. They got me back on my feet to see him outpatient and I got to go home. 

    Through the many weeks, months, and even years of being diagnosed. There’s been a lot of “This is it,  this is what we’ve been waiting for!” To only be let down with something to the effect of “This isn’t good.” Or “This medication isn’t working anymore.” Or even that “I was denied for a trial, because my age (17.5) was “too young” to be considered in their 18+ age group. Only because within the 6+ months to go through the testing, meetings, blood work, scans, new doctors visits. All before I could even start the medication HAD they approved me. **Spoiler alert: I got accepted almost 2.5 years later. And once again, the medication didn’t work of me!**
    Or being told “That if you try this medication, there’s a possibility that you won’t ever be able to have kids.” Or “That you’ll never be able to live by yourself, because with constant new medications, you never know when something could go wrong. “

    It’s been just a few days shy of five years of this. Five years since I’ve been diagnosed. And here is what I’ve accomplished since then, because I’m #StrongerThanArthritis 
    • I’ve been a camp counselor for kids with chronic illnesses twice!
    • I graduated high school 
    • I’ve created a support group for the Chronically ill, here on Facebook
    • I co-created Spoonie Care Boxes, where we send care packages to the Chronically ill, based on their illness. (Instagram link @spooniecareboxes)
    • I’ve made some pretty amazingly sick friends (literally)
    • I’ve met some amazing nurses and doctors along the way, that truly are invested in my life
    • I’ve learned to speak up for myself. 

    And most importantly 
    Even when it hurt so bad, even when it takes them 8 tries to get an IV so I can have the medication that improves my quality of life, Even when I’m throwing up so much that I can’t even think straight, even when I’ve been discouraged because if I wasn’t sick I’d be in college or about to graduate from college, even when I’m told no, or that “It isn’t humanly possible” I still push through.

    Honestly, I couldn’t do this If it wasn’t for the unconditional love from my dad. No matter how many times I get extremely scary or disheartening news from the doctors, he doesn’t even flinch. When I know it’s scary for him too.
    He holds my hair back while I’m throwing up, gives me shots (the kind with medication, not alcohol. Nobody take that the wrong way), holds my hand when I’m having a really hard moment. Let’s me cry for enough time and then says “Alright sis, this is horrible and I know it. But you need to get your sh*t together so we can conquer this too. “
    He chases down the nurses for my meds, calls doctors when I can barely get out of bed, and goes to every single appointment with me. 
    That, ladies and gentlemen is unconditional love. He doesn’t HAVE to do any of this. When I turned 18, he could have said “Alright, you’re on your own” but he didn’t. He’s pretty great too!

    Remember, you’re ALWAYS ENOUGH!
    Keep conquering 
    Love Hayley Ann

    Wednesday, 26 September 2018

    September is Pain Awareness Month 2018

    So I thought I do a post on pain as September is Pain Awareness Month. Unfortunately chronic pain is a key symptom of all of my main illnesses. Whether it be headaches/migraines, muscle spasms, joint pain, musculoskeletal, stomach/abdominal or neuropathic pain.

    Pain can either be widespread meaning is is in multiple parts of your body or all over body pain. Or there is regional pain which is pain in a specific area such as your right shoulder which is because I've just dislocated it.

    Acute pain is sudden pain and doesn't hang around for long, where as chronic pain is longer lasting and may lasts days, weeks or even months.

    For me I had a baseline level of pain which is my usual level of pain that I live with daily that is managed by daily medication and PRN (as and when needed) pain relief medication which I use as 'breakthrough' pain relief when the pain flares 
    where my baseline pain flares up and becomes more severe. The PRN medication can range from paracetamol to morphine depending on how much and how bad the pain is. I also use alternatives too such as my TENS machine and heat. I also use exercises such as the ones given to me by my physiotherapist, or just doing some yoga stretches; I also use splints and braces; pacing myself is also a really good tool and I also use mobility aids like my wheelchair or my crutches.

    I prefer personally to use the term 'pain relief' as often it never full takes that pain away. It just reduces the level of pain I'm in so I can get on with my life as much as possible.

    Pain is very tricky to control as it's very unpredictable and is very difficult to live with.

    I struggle with lots of different types of pain which can be tricky and sometimes unbearable at times.

    Musculoskeletal pain 
    affects the muscles, ligaments and tendons, and bones. My back, especially my lower back where I have my hyperlordosis (inner curvature of the lower spine) and also from my muscle spasms. 

    Neuropathic Pain is caused by damage or problems with the nervous system. It can result in a number of different sensations from burning, to numbness to a pins-and-needles sensation.

    Joint pain is attributed mostly to my hypermobility with my joints being lax so they easily sublux or even dislocate; because my joints are 'loose' it can cause discomfort and pain.

    Muscle pain can range from aches to muscle fatigue to tenderness and more. Most of my muscle pain comes from having M.E. but also from having tonic-clonic seizures.

    Abdominal/Stomach Pain which is mostly due to my IBS but also because my digestive system is stretcher due to having faulty collagen because of my HSD.

    Headaches and Migraines I live with Chronic Daily Headaches, I've gotten so used to having them that they're just "there". Sometimes the headaches brew into a migraine, for me its either a Migraine with an Aura or in the extreme a Hemiplegic Migraine, but thankfully I'm not on medication and since them I haven't had any major migraine attacks.

    "Many people with HSD will experience frequent acute injuries such as sprains, strains, subluxations and dislocations. These injuries can cause short-term pain but many people with HSDs also have chronic pain." - JB Occupational Therapy

    "Pain that can be persistent and difficult to control. Pain is often muscular, but it can also be rheumatic or neuropathic (where it has a burning or searing quality and may be associated with paresthesia and other sensory disturbances)." - M.E. Association
    "Chronic pain occurs when signals of pain remain active in the nervous system for weeks, months, or even years. This can take both a physical and emotional toll on a person. This type of pain does not always respond to medication." - FND Hope

    Living with chronic pain isn't easy, you get so used to being in pain that you forget what it feels like to be pain free.

    I embrace the good days when my pain is minimal and I can get on with my day, but in an instant that can change. My abdominal pain my suddenly flare up, or I my dislocate my shoulder. And I dread the bad pain time, when I'm in such unbearable pain I can't do anything and I am restless because I can't get comfortable and I'm exhausting all my resources to ease the pain just that tiny fraction. 

    Even sensory information can be painful, this is partly due to my M.E. and partly to do with my headaches/migraines; I wear tinted lenses as I'm very light sensitive and I have a pair of ear defenders for when noise can be painful. Sometimes when I'm quite unwell even touch, like the weight of my body on the bed or the weight of a blanket on top of me and movement can be painful.

    Living with chronic pain is hard to sum up and it is much more widespread than the pain itself, you get the side effects from the medication you take to manage your pain, pain can leave you tired and brain fogged, it affects my sleep and mood. It can also be very isolating, especially when people around you don't understand your chronic pain, especially as it can't be seen.

    I've come to learn to live with chronic pain and embrace the good days and endure he bad days.

    Sunday, 23 September 2018

    One Second Every Day: September - Week 2

    • Monday 10th September - Dull and uninteresting day. Was exhausted at the end of the day and went to bed early as my hips where hurting quite a bit.
    • Tuesday 11th September - Difficult day emotionally as I had a conversation with someone at group therapy and they didn't like what I said (seriously it was so minor), they're quite a playful person, so I gave a playful answer when they asked me something and they didn't like what I had said so in relation they maliciously damaged my artwork which I had spent hours making which really got to me as it was so un-called for. So that set me off for a bad day. What was nice was when I got home I had some mail including some more beads for my 'Warrior Beads' project and inside the package was a bear with the words 'strength' on with a note saying "for never giving up". That evening as a distraction I sat and brought my Warrior Beads up-to-date.
    • Wednesday 12th September - Fairly quiet day. Woke up not feeling great so had a PJ morning and watched TV and did a bit of crocheting. Little victories and managed to get showered and washed my hair. Had a 'pamper' show using nice products, mostly from my Birchbox's as a 'pick-me-up'. The volunteer home library lady came round in the afternoon with some audiobooks for me so that will make a nice change to listen to some books as I crochet. I was struggling a bit emotionally after yesterday so I called my care co-ordinator to have a chat with them. The evening was a bit of a blur of seizures and spasms, after over and hour and a half it was time for some diazepam which I hate taking but I seem to be doing through a bad spell of prolonged seizure episodes and spasms at the moment which I'm hoping will subside so I won't be taking the diazepam so much. The increased dose helped and finally it settled my spasming and I headed up to bed. I was in quite a bit of pain so I put on the first Harry Potter film as a distraction and eventually nodded off.
    • Thursday 13th September - Woke up with immense pain down my left ribs. Sorted my day's meds out, had breakfast and then went upstairs to get dressed when my body decided to have a few more spasms and tonic-clonic seizures. Thankfully Mandy was there, just about to go to work, but her work know about my health so they was okay with Mandy being a bit late. I had another PJ morning and just kept topped up with pain relief and hugging my heat pad. The pain got so bad that I ended up calling the GP practice and my GP thinks that given my hypermobility I've probably dislocated a few ribs - ouch! Spent the day resting and napping. In the late afternoon my step-sister came round to visit and she painted my nails so I feel much better as they've been bare for so long. My plan is to attempt some crocheting this evening, even it's just 2 or 3 squares. Tomorrow hopefully I will be feeling better and I can be more productive with my crochet.
    • Friday 14th September - Had a bad night's sleep, struggled to get off as I couldn't get comfortable and then every deep inhale woke me up in pain. Had a quite chilled out day. Finished off a letter to one of my pen pals and did some crocheting. The pharmacy delivery actually came today - yay! Managed to get some crocheting done on my blanket and so far I'm on track with it. I also finally got my summary back from my gastro Dr at UCLH and my B12 and iron levels are deficient which may explain y increased fatigued, it also included my request for my Gastric Emptying Study to be done locally; it also mention something about having an EEG to check my long QT something with was a bit worrying so I called the GP practice and the receptionist has made my GP aware of the letter so he can action it.
    • Saturday 15th September - Nice chilled out and productive afternoon (this morning I accidentally overslept as my alarm didn't go off so I didn't wake up until about half 11; thankfully my meds alarm went off at 9am so I had my 9am meds). Though I must have needed the sleep as I'm not sleeping well at the moment as I keep waking up in pain and I just can't get comfortable. In the afternoon I had a nice long hot bath for my pain and then I got dressed. I managed to get three squares crocheted and stitched on; I then took a break and did some PostCrossing postcards. My bedroom looked like a slight stationary bomb site but I managed to tidy up rather than just leave it out. I've also discovered a new show on Netflix called Project Runway, its quite Americanised buy its a fashion design program so makes a change from Bake Off. I also had a phone call today from someone from Lloyds Pharmacy in regards to my email, she was very annoyed that for two Monday's I had gone without my breakfast and lunch time medications as the Friday delivery didn't happen and is going to investigate how things are run at the weekends and she was annoyed for me/my carer that she wasn't told when she walked in that my medication tray wasn't ready, or they knew where to look for it (controlled drugs cabinet) and also about the lack of driver situation; she was lovely and very aware of my worries about my complaint being identified as me which was nice, so hopefully things will run smoother in future as I said that in the past I've had issues at the weekends as the staff aren't familiar with where things are kept but I did give out my praises to the usual delivery driver who is amazing and how compared to previous pharmacies I've been with Lloyds is much better.
    • Sunday 16th September - Still been in a lot of pain and still not sleeping well. I had a nice hot bath and got dressed. Rik then came round for a few hours and we watched a documentary and a couple of episodes of The X-Files and we drank tea so that was a nice distraction. I tried to do some crocheting but my body just wasn't having it so I've been curled up with a hot water bottle and a blanket today watching Project Runway. At one point I was so feverish I was shaking but the paracetamol brought my temp down. I don't feel too worried about my crochet as I did a light miscalculation on my weeks so I have two overspill weeks and my aim is 16 squares a week over 12 weeks and I've managed to make 19 this week. I'm planning on having an early night as I need to make it to group therapy tomorrow to meet my attendance target (which is super difficult and a bit ridiculous for someone with a chronic illness), but if tomorrow I'm having a day like today where I'm needing regular pain relief including my oramorph as well as my daily slow release pain meds I dint think it should be wise I go in, so I'm in a rock and a hard place.

    Gratitude List...
    • My bear from the Warrior Beads project
    • Little victories like making it out of bed, getting washed and dressed
    • Medication
    • My family and friends/pen pals
    • Being under the care of really good specialists in London
    • Lay-in's (even the accidental ones)
    • Being productive
    • Being able to listen to my body and what it needs
    • Helpful staff at customer services

    Sunday, 16 September 2018

    One Second Every Day: September - Week 1

    • Saturday 1st September - Chilled out day. Had my usual Saturday lay in. The best part about today was receiving some mail from one of my pen pals which included a handmade sewn zebra so any name suggestions get in touch or comment below! Mostly spent the day watching Netflix and napping and recharging my batteries as its the only real day I have to do that and oh does my body need it! The evening/night was difficult as my asthma was playing up and I was couching and wheezing and short of breath and I was getting panicky as I was home alone. One of my handy spoonie gadgets is my watch which I can set timers on, so I set a rolling timer to go off every 15 minutes to take my inhaler. Eventually I nodded off but I kept waking up breathless but it eased off in the early hours and then I was able to get some decent sleep.
    • Sunday 2nd September - Went to church in the morning. Rik came round for a few hours. I then sat out in the garden and typed up some letters until it got too chilly and I retreated indoors to the sun room which was nice and warm. I did plan on doing my nails with Shellac™ but time ran away with me, I also spent a while making little quote cards to put in letters. The sun room looked like a craft explosion but i felt really around o myself for tidying it away and putting it all away in my room - normally I leave craft stuff out knowing I'll be using it again the following day.
    • Monday 3rd September - Mundane day at group therapy. Really struggled with fatigue in the afternoon, so when I got home I made a few phone calls and had a nap. Got some more tidying done in y bedroom and the tidying mission is coming on really well.I've now emptied the big dumping box and now only have a little wicker basket to sort out and empty. Got a couple of mini letters written to people who I haven't been in touch with in a while, basically just saying hello and that I'm thinking of you. I also managed to shower and wash my hair which I gave myself praise for as its something I find really challenging. Dad and I then watched the third part of a drama we've been watching. Dad then blow dried my hair for me. I'm struggling to get off to sleep so I'm doing some blogging.
    • Tuesday 4th September - Felt a bit wobbly today emotionally but I've kept myself busy and distracted. It probably wasn't helped by the fact that I left my meds at home so I missed my morning zomorph tablet (slow release pain med) and my lunch meds. Thankfully I had my PRN meds bag on me so I was also to keep topped up with pain relief and I took my lunch meds when I got home. Dad asked me to make some name tags for the coat pegs of his new class so I had fun making each one unique with different fonts and pictures. I also wrote a dissertation on a letter to my friend Angharad (who made me the little zebra) and buy the time I'd finished that letter it was well past my bedtime.
    • Wednesday 5th September - Really struggling physically today with my shoulder's subluxing (slipping out of place; a bit like a minor dislocation) a heck of a lot - even just bushing my hair was a task. I was struggling physically and fatigue, probably the aftermath of yesterday. I had my Bluebird visit 12-2pm today and I got a quick shower and got dressed and then we went to Tesco's; because of my shoulders I couldn't push my own wheelchair and the shopping baskets designed to attach to wheelchairs came up to my face as it was to high so we precariously sat a basket on my knee. We got our shopping done and a few things got added to the basket, though I refrained from buying may more make-up this week! As I'm trying very hard to keep my bedroom nice, I, in a very adult fashion may I add, added to y basket some lavender non-toxic lavender multi-surface cleaner and some microfibre cleaning clothes, I also bought a new reed diffuser, (but that was on my list). So when I got home I took my meds and had some lunch and watched an episode of '999 What's Your Emergency' and then pacing myself cleared all the surfaced in my bedroom to make it look tidier (items got put in my wicker basket which I still need to get around to tiding, but it's much better than the giant box I had) and cleaned and dusted all the surfaces in my room from my TV and remote controls and CD player to my windowsills and my bedside table. I also cleaned my windows and cupboard doors and my mirror. Even though I paced myself I was exhausted and it really aggravated my shoulder but it felt good and hopefully with it smelling nice and being non-toxic it won't aggravate my asthma. It still do have a bit of mess in a corner of my room but I hope to get that done over the weekend. I crashed out for the rest of the day but it wa a good crash out as despite not feeling 100% I used my pacing skills and got jobs done.
    • Thursday 6th September - A difficult start to the day with 3 <5 minute seizures at group therapy but I managed to pick myself up, though I was in pain and still in spasm for a while. There wasn't a morning group so I was able to rest on the sofa, I felt a bit bad as other people where busy preparing dinner - we was having a buffet for dinner as it was someone's leaving day, but it was a) rather busy in that kitchenette and b) I wouldn't have been much help. In the afternoon I sat with my new care co-ordinator and we went through my care plan; one that I'd been waiting a year for since I started at he group therapy programme, but it was also nice to be involved in my care plan as in the past it was just done for me. (Though getting home I realised there was a few bits i wanted putting in but forgot to mention when we was doing it, so I'll have to write it down and see if it can be put on my care plan on Monday). When I got home I was shattered so when for a sleep and the got up and had something to eat and drink. Then Mandy's friend and daughter came round and I played a game of Rumikub with her and then I watched an episode go Bake Off and went to bed and I'd barely started my audiobook before I fell asleep - I'm trying to go back to listening to audiobooks at bedtime rather than having Netflix or the TV on.
    • Friday 7th September - Not felt well today. Had a lot of tummy ache. I've been doing a FODMAP food trial of pears and not sure if that's what's upset my stomach? It was a fairly quiet an low-key day which was nice. I had an afternoon nap but used my power nap app so I didn't over sleep. I still had an early night though as I was quite tired. I think it might be PEM from yesterday and the busy week I've had? My big accomplishment today after much emailing, online form filling and many telephone calls was managing to get my Gastric Emptying Study done at my local hospital rather than at UCLH which would have meant a very early start to the day plus low blood sugars which would equal many seizures on the way there and a 6 hour test so a long day there meaning most likely seizures on the way home too. I managed to get hold of the gastro Dr I saw and he said he would send a fax to my GP practice to request the study be done here and then the results to be sent to UCLH. He was very understanding of the distance I live away from UCLH so that felt a huge relief. My local hospital isn't to best so I have no idea of the writing list but it does take away the long distance. I don't mind travelling to London for appointments and short tests/treatment but for the Gastric Emptying Study doing it locally would be much better for me.
    • Saturday 8th September - Had a recharging day (and a long lay accidental lay in - my medication alarm didn't go off). Dad and Mandy are away which always fills me with anxiety so I glued myself to to sofa and had a Netflix day as a way of keeping myself calm and safe. At tea time one of my carers came and she made my tea and I now have fresh sheets on my bed. I felt a little sense of panic on this blanket I've been asked to make as I mis read the pattern and though I only needed 14 squares but instead I need at least 14x14 squares for the blanket so I better get crocheting like mad tomorrow. Thankfully no tonic-clonic seizures, just the usually daily myoclonics.
    • Sunday 9th September - My carer had an absolute nightmare at the pharmacy, so far this pharmacy has been okay compare to previous pharmacies, the situation was so bad according to my carer (she spent 1 ½ hrs in there and still came out with no meds, despite speaking with the pharmacist explaining that I needed one medication at 9am the following day them also not knowing where one of my medication which they had the prescription for was kept, so it was agreed that my carer would collect my tray the the missing tablets would be delivered tomorrow. So queue an email to customer services to make a complaint. The rest of the day was spent watching Bake Off and crocheting.

    Gratitude list...
    • Pen pals and great sewers
    • Netflix and napping
    • Spoonie gadgets
    • Medication
    • Sitting outside for a bit
    • Carers
    • The energy to clean and tidy my bedroom
    • Chill out days
    • Getting my Gastric Emptying Study rearranged