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

Friday, 14 September 2018

GUEST POST By Alyssa for Chronic Pain and Chiari Awareness month

“A smile is just a mask that can cover up the true reality of pain we are facing”
The month of September is Chronic Pain Awareness Month. The reality of life with chronic pain is the “masked smile life” as we want the world to see the “normal me”. Well the world needs to see the true reality of what it looks like living with chronic pain.
Living life with chronic pain is basically living a nightmare that you never wake up from. The pain is there from you from the time you wake up till the time you go to bed and you hope sleeping will help ease the pain. Pain takes away so much of our life and changes us to the point we grieve “the normal life” because living with chronic pain is pure exhaustion from the never ending doctors appointments, therapy sessions, taking medications, tears, ER trips, countless test/procedures, surgeries etc.
When people ask us how we are doing our answer is usually “okay” as we don’t want to get into explain the raw truth because most people won’t understand. In reality we wish we could just openly share and not be called dramatic, attention seekers, or be told your just imagining it etc.
Chronic pain affects us emotionally, physically or even mentally. We really need more awareness because not all chronic pain is visible. It’s sad that chronic pain is poorly understood and poorly treated. 

I am fighting multiple illness that cause daily chronic pain that’s not visible. I look health on the outside but in reality I am fighting a war against my own body. EDS (Ehlers-Danlos Syndrome) causes me to have wide spread joint pain due to dislocating multiple joints a day. POTS (Postural Orthostatic Tachycardia Syndrome) causes me to have pain in my chest due to the tachycardia (fast heart rate). Chiari, Cranial Settling and CCI (Craniocervical iInstability) has caused me to need a fusion to help brain and brainstem compression. 
Chronic pain will not define me because I am defined by my HOPE in the LORD! He is the one who gives me the strength to keep fighting when I feel like giving up! 
“Strong is faithfully fighting... it’s honestly hard but God is my rock through the suffering! I know he has a purpose for my life despite the challenge of fighting everyday and I am holding onto the promises of hope that beauty can come from pain”
My fusion scar
Smiling through the pain

Thursday, 13 September 2018

GUEST POST by Ruth for World Sepsis Day

Educate yourself, share and raise awareness. 

Sepsis kills 44,000 people a year in the UK and is the biggest killer in intensive care. 

I’ve watched people die of sepsis and septic shock as all the organs shut down and the teams are too late to save them whilst fighting for my own life in intensive care and it’s something that unfortunately I’ll never forget. It’s not only horrific on just the patients but all the families too. I’ve fought sepsis eight times now (from multiple different sources) and I also suffer with PSS (post sepsis syndrome). I know I’m very lucky to still be here and I know if it wasn’t for my knowledge of it, (my predisposition/immunity of getting it), the rapid action and treatment of the doctors and all in intensive care and the pure hope and prayers of families and friends I wouldn’t be here today. 

Please take a moment to look at these photos and talk about it for one minute. 

One moment and one share could save one more life, keep sharing, keep raising awareness, keep saving lives. 

Thank you for reading.

Monday, 10 September 2018

GUEST POST by Mary for World Suicide Prevention Day *Trigger Warning*

 *Trigger Warning*
Today is World Suicide prevention Day and I thought I’d share a little about my experiences! I firstly have lost people close to me by suicide and know many close to me who have lost loved ones by suicide too, which is heart wrenching. 
Unfortunately I too have struggled with suicidal thoughts and attempts and this is very hard for me to share but I feel it’s important to get the message out there. 
From my experience suicide isn’t a selfish act, however, it’s anything but. I know for some people, they think it would better for people if they are gone or that life is too painful to keep going and they usually aren’t mentally well enough to make rational decisions! For me I have used my eating disorder as an indirect way of killing myself but I also struggle with dissociation - this is a period of time where my mind isn’t present with my body and during this time I do quite destructive things to myself without being aware and when I come out of the dissociative state it is very scary for me.

Unfortunately I struggle with suicidal thoughts in my daily life, it’s painful but with support of health professionals and my mummy, sisters and a few close friends they help me through. However when I dissociate I am unaware of what I do and these have been the times were I have attempted to take my life. I am very lucky and got the help quick but I always live in the fear that I can’t control these thoughts and something bad will happen. But I am getting help and I hope to beat this! But I guess I wanted to show a few different photos some where I look on deaths door and some with a smile on my face! A smile can hide so much. So look after those around you. Listen to them and don’t judge. Together we can fight this and maybe save some lives along the way. Life is worth it: it may just take us a bit of time to see it. If anyone is reading this and feeling that life’s not worth living please get help. Asking for help show strength not weakness. Keep fighting to all my friends struggling with mental illness.
Helplines you can contact...

116 123 (UK and ROI) (UK) (ROI)

Papyrus Hopeline - supporting young people under 35
0800 068 41 41 
0778 620 9697 

CALM - for men
0800 58 58 58

Childline - supporting young people under 19
0800 1111

Tips for coping right now
  • Try not to think about the future – just focus on getting through today
  • Take things 5 minutes at a time
  • Stay away from drugs and alcohol
  • Get yourself to a safe place, like a friend's house
  • Try and be around other people
  • Do something you usually enjoy like arts and crafts or a favourite TV programme, book or film
  • Make yourself a hot drink
  • Have a bath or a shower
  • Go for a walk

Tuesday, 4 September 2018

One Second Every Day: August - Week 5

  • Monday 27th August - Operation bedroom tidy! Paced myself today and managed to got through all my loose paperwork and either filled it, shredded it or binned it. I also put away all the clothes hanging around my room. I was exhausted afterwards but it was a good exhausted. The evening wasn't so productive due to a prolonged seizure but I managed just about to sit though a film with Dad and Mandy once I came round enough though couldn't tell you much about it. 
  • Tuesday 28th August - On hind sight I should have gone to bed after my seizure instead of watching a film but yet again I was determined not to let FND win. The day was mediocre. Managed to clean Flop out in the afternoon before I flopped. Did 10 more minutes of tidying and am going to keep up with little bursts of tidying in my rom until it's all nice again. Perk of the day was going to bed with nice clean bedding.
  • Wednesday 29th August - Got up and ready. Katie my carers came at 11.30am and we went to the post office to post some letters and but some more international postcard stamps, then we went onto Tesco and I accidentally bought more make-up (oops!) and as a nice thing for my tidier bedroom I bought myself some sunflowers. Katie and I then headed to Sports Direct to but some ankle/wrist weights to use in my physio exercises at home. We then just had enough time to nip into The Range before heading home. When I got home I put my purchases away and got some lunch and watched and episode of Ackley Bridge. I then paced between watching TV and doing a bit more tidying in my room and also had a little nap. Just before half 6 Rik arrived and we had tea and then we washed a horror film called 'Thriller'. I'm was shattered and wanted to go to bed but accidentally knocked over my vase of sunflowers that I bought today so Mandy to the rescue. I'm now tucked up in bed and ready for sleep.
  • Thursday 30th August - Another mediocre day at group therapy, struggling a bit with my mood and fatigue not helping. Didn't manage any tidying when I got home. I started to type a reply to a letter but I was a bit too brain fogged so I just put series 2 of The Great British Bake Off on Netflix and accidentally nodded off. Dad woke me up for tea and after to I went back to the sofa and nodded off again so by half 8 I was ready to go to bed.
  • Friday 31st August - Up to make a phone call or 8.30am and then when back to bed for a rather long lay in, but I had nothing  to get up for and my body must have needed it. I got up and watched a bit of the television and had breakfast and then summed up the energy to get washed and dressed. I could veg out a bit more on my pj's without being nagged at as Dad and Mandy had gone to Lincoln to pick up the new car. In the afternoon I had an appointment at the beauty salon in the village. Mandy challenged me to the idea of getting the bus back home; its literally only three stops. I was so nervous having had bad experiences on terms of accessibility on buses before and also being alone and having seizure in public (thankfully all positive experiences if you discount the seizures!). So when I finished at the salon the bus stop was literally just outside and I checked what bus I needed and very shortly after I sat down the number 9 came along. The bus diver very nicely lowered the bus when I asked him to and I showed him my disabled bus pass and explained quickly that I have a memory impairment and needed to get off just after the pub. The gentleman sat one one of the priority seats stood up to allow me to sit next to him without me even asking (in the past I've had bad experiences of people not wanting to give up priority seats e.g. move their shopping off the seat or telling me to go upstairs despite me politely stating that that seat is for people like me and you and I can't physically stand let alone get up the bus' stairs) which made my anxiety a lot easier as I didn't have to put up a fight. I then text my Dad who was going to meet me off the bus to make sure I was okay and hadn't say had an absence seizure and forgotten where I was or to get off the bus. Thankfully where our house is situated we have a private access gate down a private drive from when the plot of new builds used to be an orchard and our secret gate was the access for Mr Dickinson who lived on the orchard so its only a 30 second/1minute walk to the bus stop; if we lived elsewhere on the ploy of new builds I wouldn't be able to get the bus as our road is far to long for me to walk down to get to the bus stop at the end of the road. So that took a huge amount of bravery, anxiety and courage so I gave myself a bravery bead and its defiantly something I will try again such as going to the Drs or into the village if I'm having a good day with my mobility. And I just have to keep reminding myself that just because I did it doesn't mean it was easy. Oh and the new car is AWESOME, it has parking assist, which basically means it parks itself (how crazy is that), it has heated seats in the front and dual climate control so I can be toasty warm and the driver be nice and cool and it has a USB socket and in the back is a pull down arm rest with drinks holder and also a 12V socket so I can charge my own devices in the back. Best of all it's a sparkly black colour!

Gratitude list...
  • Having the energy to start getting my bedroom tidied
  • Cuddles with Flop
  • Clean bedding
  • My carers
  • God for creating sunflowers
  • Nap times
  • Friends and films
  • Netflix putting on The Great British Bake Off
  • Lay ins and pjs 
  • Kindness in other people
  • My own bravery
  • My Dad and Mandy for helping me out and supporting and challenging me
  • Sparkly cars with cool features

Friday, 31 August 2018

One Second Every Day: August - Week 4

  • Monday 20th August - Went to group therapy but got sent home just in case I do have a have a tummy bug so I've got to stay off for 48hrs. I got home an rested and also did some PostCrossing and made a few medical related phone calls. I also started a new series on Netflix called 'Stranger Things' which so far is pretty good. Dad and I also watched a documentary together. Time seemed to fly by today.
  • Tuesday 21st August - Still on sick leave. Dad did some private tuition this morning and I had a nice chat with the mum. Currently just watching more Stranger Things and hoping to have the energy to do some tidying in my room and write some more letters today. Feeling much better today than I have don the past few days.
  • Wednesday 22nd August - Today was a day of little victories, like getting out of bed, getting something to eat, getting showered and washing my hair and pushing through the pain and fatigue and other symptoms. In the evening Rik came round and we watched a film and drank tea. I'm enjoying Flops company. He enjoyed munching on a carrot I gave to him today and its very calming stroking him. I think combined with my usual symptoms and my tummy bug M.E. has really knocked it out of me today. I supposed to be going to group therapy tomorrow so I'm just hoping I have the energy to go. 
  • Thursday 23rd August - First day back at group therapy after my time off with a tummy bug. It was a difficult day at the psychologist there it was her last day and I got on really well with her so I was sad to see her go. I got home and crashed out and my usual daily headache started to creep into a migraine so I took some magic Sumatriptan and put on my sunglasses and managed to watch a film with Dad and Mandy. I was really struggling to get off to sleep so I put Harry Potter on my TV as a distraction to listen to.
  • Friday 24th August - Chilled out day. Woke up to make a phone call at 8.30am and then went back to bed. Had a chilled out day. In the evening I had a few tonic-clonic seizures and was in spasm for over and hour afterwards. Managed to have my tea without throwing it at the wall (yes I have done that in the past!) and after tea Dad, Mandy and I had another film night.
  • Saturday 25th August - Accidentally slept in until 12pm, oops! Got up and breakfasted and I've just had a bath and got dressed. Need to get myself ready and my packed lunch made by 4.30pm for when Dad and Mandy get home (the've gone to look at a car) and then this evening Dad and I are going to Gunby Hall to watch an open air theatre production of Alice's Adventures in Wonderland. Had a lovely time with Dad at Gunby Hall, and I'm now in bed watching The Great British Bake Off (I was a late started to watching the GBBO so was delighted when Netflix put on the first 7 series) with my TENS machine on my hips which have been hurting me all afternoon and is keeping me awake. Hopefully it will ease the pain so I can go to bed, (especially as I want to avoid taking medication straight away).
  • Sunday 26th August - Got up on time today, yay! Rik came round for a few hours and we watched a film and I designed him some logos and we drank far too much tea. Watched some TV, the time flew by and tidying up my room got forgotten about. I did mange to get two replies to letters done. I hope I have in my letter rack all the letters I have to reply to as I have a feeling there's some missing maybe? Had a long seizure and I should really have gone to bed in hindsight but ended up watching a film with Dad and Mandy. Tomorrows' plan is to do some blogging, doing some tidying in my bedroom as I really don't like how messy it has gotten; even if I do it in small manageable chucks and pace myself I can't use illness as an excuse, order a few things and choose which distance learning course I'd like to do next. So lets see how that plan works out!...

Gratitude List:
  • My Dad for looking after me
  • Friends, tea and films
  • Being able to leave the house
  • Little victories

Thursday, 30 August 2018

August Birchbox Review

This month's Birchbox was designed by Etsy seller Nikki Strange. This month's birch box design came as a unique design and there was a chance of receiving 1 of 10 designs made by Etsy sellers and the theme was "Live a life beautiful".

Inside I received...

Eye Shadow Crayon in 'Fetch' by Dirty Little Secrets
This product I got to choose the shade and I've tried this product out and I love it! The shade is beautiful subtle; it's very neutral with a little shimmer. It's very easy to put on as not brushes are needed and it has a lovely creamy texture. Just scribble a bit onto your eyelids and blend in with you finger and off you go! It can also work as a base coat of powder eye shadows and it can also be used as a highlighter so two-in-one - fantastic! And it's lasts all day but it easy to take off at the end of the day. I got this as a full size product and it's a decent size and a little goes a long way so it's going to keep me going for a while. The RRP of this product is £10.50.

CLÄ’ Cosmetics Melting Lip Powder in Red Cherry
This little sample, tough it may a sample a little goes a long way. It can be used as either a lip colour or a cheek tint and goes on as a lovely matte finish and as a bonus it's smudge proof so is long lasting throughout the day. The RRP of the full size product is £15

Dr Botanicals Pomegranate Regenerating Sleeping Mask
This product I have tried out. Just cleans your face before bed and apply a small out and work into your skin and you wake up with lovely refreshed skin. It smalls amazing too. "The antioxidants [in this product] will rejuvenate tired skin so when you'll wake to a glow, hydrated complexion". The RRP of this product is £14.90

ModelCo®  Eye Define Crayon Liner
This was another full size product which I haven't used yet as I'm wanting to use up my current eye crayon. It's a twist-up crayon, so no need for sharpeners (yay!)  and lasts all day, perfect! The RRP of this product is £11

Bumble and bumble. Don't Blow It Hair Styler
This was a sample size and not one I've used yet but I love Bumble and bumble's other products from previous purchase's and Birchbox's but I'm eager to try it out as I often don't blow dry it's designed for towel-dried hair which isn't going to be blow dried as I often don't bother to blow dry my hair. The product uses "plant based conditioners to enhance you hair's natural texture and shine". The RRP of the full size product is £24.

All products can be bought in full size from the Birchbox Shop and if you wish to subscribe to Birchbox follow this link to earn £5 to spend in the Birchbox shop and each month new subscribers also receive a free gift. Birchbox costs £12.95 each month including P&P and there are different subscribing options and you can cancel anytime.