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...

Samaritans: 
www.samaritans.org
116 123 (UK and ROI)  
jo@samaritans.org (UK)
jo@samaritans.ie (ROI)

Papyrus Hopeline - supporting young people under 35
www.papyrus-uk.org
0800 068 41 41 
0778 620 9697 
pat@papyrus-uk.org 

CALM - for men
0800 58 58 58 
https://www.thecalmzone.net/help/webchat/

Childline - supporting young people under 19
0800 1111
www.childline.org.uk/get-support/

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.

CLĒ 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 https://www.birchbox.co.uk/invite/pm6lh 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.

Monday, 27 August 2018

Guest Post by Christina for Gastroparesis Awareness Month

It took me seven years to be diagnosed with Gastroparesis. I went from doctor to doctor with no answer other than “you’re just stressed”. Doctors wouldn’t listen to the fact that I was in pain. I was refused testing that I desperately needed due to doctors who didn’t want to do their job. All the while I’m unable to eat food without throwing up, loosing weight, and being in an immense amount of pain. 
Unfortunately, more and more people are going undiagnosed with this horrible disease due to the rarity of it. It’s misunderstood and talked about very little. 
Since August is Gastroparesis Awareness Month, I want to take the time to spread awareness and information about how this disease effects people. 

Gastroparesis is delayed gastric emptying due to a partially paralyzed stomach. The stomach pushes food into the small intestines to move food through the digestive tract. For people with Gastroparesis, our stomachs have a hard time doing that, therefore food stays undigested in our stomach for long periods of time, causing malnutrition, pain, nausea, and vomiting. 
Gastroparesis is diagnosed through a Gastric Emptying Scan (GES). This involves the patient eating food that contains a small amount of radioactive material so that a nuclear medicine scanner can watch how fast food leaves the stomach. 
Liquid digests better than solids. This is why I had to move to a liquid diet in order to get the calories I need, and even then, I’m still struggling. It’s like playing Russian Roulette with every meal. Some days food stays down just fine, and others days, not so much. 
It’s also very common for people with Dysautonomia (like myself) to have Gastroparesis since the autonomic nervous system controls digestion. 
And yes, I’m good at hiding it. As are most of us living with chronic illness. We are good at pretending everything is ok when inside we are struggling. Most people don’t even know there is something wrong.

We try our best to put on a brave face and act as normal as we can to get through the day. It’s a coping mechanism for a lot of us. 

If you are interested in finding out more about Gastroparesis, go check out www.aboutgastroparesis.org. They have a lot of helpful information for patients, or people who are curious as to what Gastroparesis is. 

Friday, 24 August 2018

GUEST POST by Cheyenne for Gastroparesis Awareness Month 'Loving My Body Despite Gastroparesis'

Loving My Body Despite Gastroparesis

“Let’s do a gastric emptying scan,” said the gastroenterologist. I was only thirteen at the time. We were on a frantic search to determine the malady at the root of my stomach woes. Relentless nausea, wretching, and the oh so unglamorous constipation—this was the umpteenth medical test, and every single one before had led to more questions than answers. I thought the idea of a gastric emptying scan to be kind of silly. What would eating radioactive eggs tell us? I can assure you I did not leave the hospital that day singing a peppy rendition of the Imagine Dragons hit titled Radioactive, but between dry heaves, I really did “feel it in my bones.”

Ironically, the gastric emptying scan I had deemed irrelevant was far from it. The results were indicative of a condition known as Gastroparesis. My stomach is partially paralyzed, digesting food and its natural acid secretions too slowly. What little I choked down basically sat there to rot.

Life changed after my diagnosis of Gastroparesis. Gazing into the mirror, I did not recognize the reflection staring back at me. It was as if I was seeing myself for the very first time. I could no longer maintain a convincing healthy façade. Foundation did not conceal the dark circles under my eyes from malnutrition. Stylish, baggy clothes did not hide my emaciated frame as I struggled to gain weight. Laparoscopic scars dotted my midsection, while feeding tubes were plastered to my face and abdomen.

Suddenly, all the changes occurring both inside and outside of my body finally had a name, as did each of my insecurities. I was vulnerable. Grabbing what little flesh I had, the nail marks embedded into my skin symbolized my contempt. I had a new relationship with this earthly vessel of mine, and it was not necessarily that of positivity.

Like most teenage girls, I hated my body. Still, the hatred I harbored was deeper than “does this outfit make my butt look big” or the anxiety over those extra cheese fries causing an unsightly breakout. Instead, it was fueled by the deep yearnings for a functioning body—one that could easily gain a few pounds to disguise my sickly appearance or one that was able to digest a plate full of ooey gooey delicacies. However, I had Gastroparesis. That was never going to be me.

Learning to accept my body in the stages of awkward adolescence was an arduous process. I went through periods of resenting my peers. I was envious of the bodies they had, which digest food properly and lack painful medical devices. In a way, I was jealous of their ignorance. Many had the audacity to remark, “I wish I had what you had so I could lose weight,” completely forgetting that their muscular build and the ability to shovel snacks in their mouth without hesitation would be things of the past if they had Gastroparesis too.

As I approached young adulthood, I had to alter my perspective. Wallowing in the hypothetical out of order sign on my gastrointestinal tract would not bring me satisfaction. I later realized that I have to focus on what I can do rather than what I cannot do.


Perhaps I cannot eat, but I can smile. I can laugh. I can love. I can choose to be joyful always. It is because of Gastroparesis that I once hated my body. Yet, it is also because of Gastroparesis that I found solace and appreciation in all my body can do.

Cheyanne's blog can be found at www.hospitalprincess.com




Thursday, 23 August 2018

Between a Rock and a Hard Place

In the year I've been at group therapy (and I still have enough 11 month to go) my symptoms, especially my various types of pain and especially my fatigue have gotten worse because I have to put it aside to go to group even when when my body is screaming at me to stay home/in bed and rest and the staff there I feel don't understand or what to listen to my physical health stuff; they want me to leave it at the door and focus on my mental health (despite my physical health having a great impact on my mental health) and they blame my fatigue on my medication which is keeping me afloat and I'm saying over and over again "it's not my my meds, it's my M.E." [that's making me so tired] but they don't want to listen and I'm left feeling voiceless and wishing I wasn't physically sick. 

Yesterday I called up my contact for the Complex Care Team, she's just the admin but was very understanding when I explained my predicament with the group therapy staff not understanding or listening to me about my physical health and them wanting to reduce my medication (even though they're not Drs). Hopefully soon I'll be assigned a key worker in in team so I can have someone to talk to and help me unmuddle things (and have a big MDT (Multi Disciplinary Team) meeting with my care co-ordinator from the group therapy to explain and discuss my needs, physical and emotional) as I'm just declining and at the moment I'm wondering if I can continue with group therapy but if I do I will lose all access to mental health care and I can't do that so I'm in a rock and a hard place and my body is failing me.

Before I started the group therapy programme I was able to pace myself throughout the day. On my bad days I was able to stay in bed and rest and do what I can and I was able to spread my energy out thought out the day and get up when my body was ready and take rest/nap breaks when needed and do what needed to be done when I had full capability. Now jobs get left - my bedroom is a mess as I don't have the energy because my days off from group therapy are spent resting because I'm so drained and when I get home I just crash for the rest of the evening until I drag myself to bed because I'm forced to get up earlier than my body likes and leave the house and sit through groups and fight the fatigue and get moaned at because I'm nodding/switched off and my medication is being blamed when there should be more understanding of my M.E. and FND.

The group therapy staff are also putting stoppers in the way to me getting to rehab in Leeds which really angered me when they brought it up in my last CPA (Care Plan Assessment) and they want to speak with Professor Edwards (when I don't know what they're saying to him) about my mental health and how that might make my ineligible for the rehab in Leeds at this present time as they don't think I should be going because of the state of my mental health even though like I've said a big chunk of that is caused by my physical health, which just sucked away all my hope of getting some help for my FND and M.E. because I've been waiting for this rehab ever since I first saw Professor Edwards last year. I think I need to find out and request that I be kept in the loop with all conversations with Professor Edwards and the Leeds rehab centre to ensure the correct information is getting passed on?

I just really don't know what to do. I might have to take some timeout of group therapy if this hypermobility sessions come up so that might give me a welcome break to at least try and look after my body in-between travelling to UCLH.

I think when I go to group therapy later on today (it's currently 5.40am and I can't sleep) I'm going to have a conversation with my care co-ordinator about everything. For now, I need to try and get some sleep.

Tuesday, 21 August 2018

One Second Every Day: August - Week 3


  • Monday 13th August - Last day in Goathland. Typed some letters in the morning then ensured I had packed everything. We said our goodbyes to my Auntie and Uncle and we set off. On the way out of Goathland we stopped off at Goathland train station where they filmed the scenes for Hogmeade Station in the Harry Potter films.
  • Tuesday 14th August - Not much going on today. Had an early night with some Netflix in bed and a cup of tea.
  • Wednesday 15th August - Had a fairly chilled out day. Had a lay in ad then got ready and watched some TV. Dad and I finished off watching a series called Hidden. Then at 2.45 my Bluebird nurse came and picked 
  • Thursday 16th August - Challenging day at group therapy and fatigue was flaring in the afternoon so when I got home I just crashed.  
  • Friday 17th August - Had an lay in this morning though I did get up to make a phone call at 8.30am then went back to bed. Symptoms have been flaring so had a rest day apart form my hairdresser coming round in the afternoon.
  • Saturday 18th August - Had an accidentally in this morning but I'm guessing that my body needed the rest. I got up and ready and watched some Netflix. I've just finished cleaning Flop's cage and he's now happy munching grass in his outdoor run and I've decided to spend a bit of time out in the garden making the most of the summer whilst it's still here. I got tired after a while and just rested on the sofa the rest of the afternoon. The evening was a blur of seizures, muscles spasms and muscle rigidity and I didn't get get off to sleep until the early hours.
  • Sunday 19th August  - Woke up at the normal time for church to see how I felt but I felt so ill and so was going to lay in but decided seems I was awake that I'd drag myself downstairs. I think I also had a tummy bug (maybe?) and felt so sick and exhausted and weak. Rik (Spen) was going to come round and I was going to call it off but I'd perked up and in the afternoon we drank tea and watched a film for a couple of hours. I tried to not over rest so finished off typing up some letters and printed them off and made three letters up ready to post and paced between that and watching TV and also tidying up my room. My pain, especially in my hip is flaring so I'm just resting and going to watch an episode of Desperate Housewives with Mandy hopefully before bed.

    Gratitude list...

  • Living is such a beautiful country
  • Friends
  • Rest days
  • Cuddles with Flop
  • My Dad who does so much for me
  • Desperate Housewives sessions with Mandy