Wednesday, 12 December 2018

YouTube Video: Aids and adaptations I use [CC]

Second video up on my YouTube channel. This one is about some of the aids and adaptations that I use.

I've not been sponsored by any of the companies that I've featured but I'll put links below to some of the gadgets I use if you're interested in purchasing them yourself.

Link to my YouTub channel can be found by clicking here.

Monday, 10 December 2018

One Second Every Day: December 2018 - Week 1 & 2

  • Saturday 1st December - Bad M.E. day; I think Thursday is catching up on me (see blog post 'One Second Every Day: November - Week 4'). Thankfully I was able to have a lay-in and I sleep in until 11am. I've had restful day as I've been very tired and in a lot of pain so I've just watched TV (an accidentally fell asleep) thankfully I managed to get my quota of crochet done today. Dad also washed my hair for me so that feel nice as it's been needing to be done but I just haven't had the energy to do it myself as I've been going through a bit of a relapse lately and on Wednesday I decided to go out with Rosie instead of stay in and get her to wash my hair. I also made a post on an FND support group about my experience in A&E on Thursday so the past few days I've been inundated with support and comments. Dad's made a complaint about the conversation he had with he Dr and next week I'm gong to look at making a complaint to the CQC/CCG as in the past Ive gotten no where with PALS but it's nice to have received so much support.
  • Sunday 2nd December - I barely slept last night and didn't get off to sleep until about 4am but I woke up in time to see if I could make it to church but decided I'd be pushing it and I didn't want to push my too far and make myself ill or have a seizure etc so I opted to stay at home and watch some TV on laptop and portly fell asleep mid programme so that kinda answered that questions for choosing to stay home. In the afternoon I just got on with my crochet and just had a chilled out day trying to recover and look after myself.
  • Monday 3rd December - Third bad M.E. in a row. Rather than set my alarm on my phone I though my medication alarm would suffice. Unfortunately it didn't. Normally I set two alarms one to wake me up and the second to ensure I don't fall back to sleep. My alarm on my medication box did wake me up but I fell back to sleep again waking up with a notification on my phone at 12pm so I must have needed to sleep! I got up and had my meds and got something to eat and then just watched TV whilst I got myself in to day mode. I then had a wash and got dressed (which took up precious energy and took a great deal of effort) as I'd said to my Uncle that he could pop round around 2pm and I didn't;t still want to be in my pj's. At 3pm my carer came for a ½ hr call that my care agency are generously offering me for free for the time beings as I've been quite lonely and low in mood. We changed my bedding and my carer hoovered my floor and then we made a quick trip in the car to the post office to post some letters and get some cash out. I've made good progress with my blanket today getting one row done, unfortunately I stitched it on the wrong side but when we measured the blanket on double bed in the spare room we realised that I'd need to do another 3 rows to make it a double bed blanket size so I've ordered more yarn and I'm feeling pretty panicked that I'll get it made in time. The evening was spent having a prolonged seizure. I felt it coming on and laid myself on the sofa but I somehow managed to mid tonic-clonic seizure fall off the sofa with a crash landing on my front so Dad and Mandy turned me onto my back and cushioned me on the floor until I came round. I dislocated my shoulder in the seizure (nothing new) so that's feeling pretty sore. My speech has been stuttering lately post seizure. Once I'd fully come round I got myself upstairs but had a fall on the landing on my way to the bathroom. I'm now tucked up in bed and hopefully I'll have a good night's sleep. 
  • Tuesday 4th December - Woke up relatively okay today. I've mostly spent the day cracking on with my crochet and have managed to make 5 squares today so feeling pretty proud of myself. I've also made some phone calls and have contacted the CCG regarding A&E. I also got a phone call from my district nurse to let me know that my referral to the falls clinic fell through as they only take on people over the age of 65 which was very frustrating as it felt like I was being told that I was too young to be having falls even though I've had 2 today. So I called the Care Plus Group to log most (sort of) complaint as I didn't feel it was fair that I was being denied a service based on my age and I'm sure there are plenty of other under 65 year old in the area that have falls for whatever reason and the lady I spoke with was very understanding and is going to speak with he relevant person and someone will get back to me. The evening was spent not feeling 100% and seizure-isa and I was home alone but it felt reassuring to know that CareLink was there should I need them. As soon as Dad and Mandy came home I settled myself in bed.
  • Wednesday 5th December - Struggled with getting up today and wasn't feeling great. I was planning on going out to pick up my pottery painting bits but I just felt awful so I called Bluebird and asked if my carer could pick them up for me and then make her way to me instead. I also had a new carer shadowing and she was lovely so I hope to see her again. With my care agency I have a 'care team' so a team of regular carers that know me and I know them. My M.E. has really been getting to me the past few weeks, especially the past week with my symptoms flaring and PEM being worse than usual. The afternoon was spent crocheting. When Dad got home from work he made tea and then we watched something on TV. My GP called me and is increasing my zomorph dose as my pain has been worse but we're starting small as I didn't want to whack it up right away. I also have the COPE Pain Managment program for my hypermobility starting on the 13th and I'm seeing Professor Edwards next month and I'm going to prompt him for that M.E. referral he said he'd make when I last saw him and hopefully he can help me with my pain too. I've also ordered another Christmas present so other than my brother that's all my Christmas shopping done. I now just need to get wrapping and posting as I received my first Christmas presents in the post today from my pen pal Olivia. I have stomach ache so I'm sipping on some herbal tea. Because I'm not feeling 100% I've had to give the bible study group at church a miss but someone is going to send me the link to the video so I can watch it at home. My plan is to get as much crocheting done as possible and try and get and early night as since my M.E. flare I've not been getting off to sleep well. It's so ironic with M.E. that during the day you're so fatigued yet you get sleep reversal and are a total insomniac at bedtime!
  • Thursday 6th December - Woke up relatively okay-ish but I did have to drag myself through the morning. I was in day mode by the afternoon. I watched some television which took a bit more concentration today. I did some crocheting, I haven't achieved as much as I have been doing lately but I've accepted that that's okay and each square is a square closer to finishing the blanket so I can get the border done. I had a nap after tea. I also started watching some YouTube videos which was much easier than concentrating on a whole TV program and I set up my YouTube channel which I'm giving a whirl.
  • Friday 7th December - Had an accidental lay-in this morning. Not done much today. My hairdresser came round just after 2pm. Most of my energy is going into crocheting at the moment which is taking its toll on my wrists so I've got my splints out again to just give my writs a break. I'm enjoying rediscovering YouTube especially Jessica Kellgren-Fozard and Doctor Mike. I had a few tonic-clonic seizures when I was home alone but I pressed my CareLink and they stayed with me an called Dad who was on his way home and then when Dad got home he was able to help me get sat up, comfortable and give my meds to me. I had a bath before bed (I'm currently in bed now ready to get some sleep) and my dysautonomia went a bit crazy and my fatigue shot up (I'm feeling better for laying in bed and things have calmed down a bit but I was close to tears with how tired I was). Right, now time for bed.
  • Saturday 8th December - Didn't type this in on the day so my memory of the day is a bit hazy. Had a lay in and spent most of the day flitting between crocheting squares and resting/napping. Pain wasn't great so looking forward to Monday when I start my increased dose of zomorph. Crocheting is a good distraction from the pain but at the same time it's really affecting my wrists which get a bit floppy and weak after a while so I've been having to put my braces on a bit more.
  • Sunday 9th December - Managed to make it to church this morning but I was shattered when I got home so I went for a nap for a couple of hours. I then cleaned Flop's cage out as I didn't get it done last weekend/earlier this week. My dizziness and racing heart has been playing up today resulting in a few fainting episodes when standing up. Mandy helped me wrap some present up as they was awkward shapes. I then got a few squares crocheted and sewn onto the blanket before heading to bed.


  • Gratitude list...
    • Online support
    • Carers, CareLink and my Dad
    • My wrist braces
    • YouTube 
    • Flop
    • Being well enough to go to church
    • Naps


New YouTube channel

So as an extension to my blog I though I'd start up a YouTube channel to share more with you and hopefully get up some guest videos.

My YouTube channel can be found here.

Writing posts for here can often take me days sometimes weeks; I've even started on some for next year so by talking it might make it easier to share with you some things.

Each video will include closed captions [CC] and hopefully my video making skills will improve over time.

Comment below either here or on my YouTube video suggestions for what you would like me to make some videos about and if you would like to share your story in video format just email your video over to diaryofazebrablog@hotmail.com.


Saturday, 8 December 2018

GUEST POST by Ella for Crohn’s and Colitis Awareness Week

This week has been Crohn’s and Colitis Awareness Week – these are conditions that often aren’t widely talked about or known, and I definitely didn’t have awareness of before I was diagnosed at the age of 17. Crohn’s disease was my first diagnosis before EDS (Ehlers-Danlos Syndrome) became an issue, and when it was flared, which it was constantly for numerous years before I found a drug that fortunately put me in remission, it was so so debilitating. I had numerous hospital admissions to have IV steroids and various tests, which was still the case throughout sixth form and my first year at Cambridge and it really turning my life upside down.
Crohn’s Disease and Ulcerative Colitis are the two most common forms of Inflammatory Bowel Disease, and these conditions affect over 300,000 people in the UK alone.
Symptoms can vary from person to person, but they can include; diarrhoea, stomach pains, fatigue, weight loss and anaemia just to name a few. This is way more than a ‘pooing’ disease. The symptoms make this disease so isolating, with so much stigma around it. When I was first diagnosed I just couldn’t leave the house, and was always panicking about where the nearest toilet would be if I did go out. As well as these symptoms, IBD can also impact joints and can cause eye inflammation.
There are various methods of diagnosing inflammatory bowel diseases, one of the main methods being endoscopies. This involves a doctor using a flexible tube with a camera to examine the digestive system. X-Rays, MRIs, ultrasounds, blood and stool tests can also be used to make a diagnosis.
Treatments vary, but the aim of them is to reduce inflammation in the gut and ultimately achieve remission. Once this is the case, maintenance medications are usually prescribed long term to try to prevent a relapse. Often in a flare, initially a weaning course of steroids are prescribed to reduce inflammation and allow the bowel to heal. Once symptoms calm, maintenance medication is started. In my case, I tried multiple maintenance medications with no luck and my symptoms became very steroid dependent which means now that I have adrenal insufficiency and have to take steroids for life. Fortunately, after years of trying different medications, I was approved funding for Humira and inject myself every fortnight which allowed me to achieve remission.
Crohn’s disease turned my life upside down, but also turned the lives of my family upside down too as they were going through the pain, upset and struggle with me. My beautiful sister, Laura, ran the Great North Run last year for Crohn’s and Colitis UK after being there through everything I’d gone through, and I was so proud of her raising money for such a worthy cause, and one very close to our hearts.
Crohn’s and Colitis Awareness Week is a chance to support the 300,000 sufferers, and millions more worldwide, as well as making these incurable, often invisible illnesses, visible. This week is the optimal opportunity to increase understanding of these conditions, and raise awareness of the debilitating nature of Inflammatory Bowel Disease.
For more information visit: www.crohnsandcolitis.org.uk 
Ella's blog can be found at: www.ellahollis.wordpress.com

Tuesday, 4 December 2018


Today is the International Day for People with Disabilities.

I think so often when you have a disability you're faced with so many different barriers. 

I can't work, go to University, access certain places because it doesn't have the access I need like ramps or the aisles are to narrow, I can't get nearly parking or a space reserved for blue badge holders (and the misuse of these spaces). The list could go on. 

I'm also faced with personal barriers in terms of the unpredictable and relentless symptoms that I face each day as well as access to care and support. Today I found out that I can't access the specialist falls clinic because I'm too young; they only take referrals to people over the age of 65. It's like I'm being told I'm young to have falls yet today I've fallen twice and once yesterday. I've also been fighting for funding for a care package (carers) for years and the care agency I employ privately have openly said that if I was older my case would be dealt with differently and many people involved in my care from my care agency to community nurses all say I need more care. There are also barriers to specialist care; I'm currently waiting and asking to be referred to a specialist M.E. team but we don't have one locally; for a while I've wanted and feel I'd benefit from hydrotherapy but again this is not something our local hospital trust has (though hopefully when I attend UCLH's hypermobility team's exercise programme I can get some hydrotherapy sessions but it would require a 6hr drive to get there but I feel lucky to be under their care). I've also been waiting over a year now for specialist funding for a place in neuro rehab in Leeds and I'm in the middle of everyone passing the responsibility onto someone else to get the funding requested.

There are also the financial barriers to having a disability - See Scope's 'Extra costs: The financial penalty of disability'. Yes you get a disability allowance (PIP or Personal Independence Payments) but it doesn't stretch as far as you think. Out of that come things like extra food money because I have to buy specialist free from foods because of allergies and intolerances, I go through extra laundry costs because of my incontinence, I have the cost to pay carers and if I could afford it I'd pay for more care than what I'm currently getting because its not enough and often I have to choose between leaving the house or get a wash and that shouldn't be the case, there's also cost of adaptive equipment that the NHS or social care don't provide and clothing  and in winter the higher energy bills because you I need the heating on more because the cold makes my symptoms worse, or there's the cost of taxi's because I can't drive or use public transport. "On average disabled people face extra costs of £570 a month related to their impairment or condition".

There are social barriers. I'm mostly housebound so I don't get out much as I'd like to such as to be able to go to groups or see friends as often as I'd like. Letter writing is my way of connecting with the world outside. 

I think a large part of the barriers I face is the invisibleness of my disability/illnesses. When you see me in my wheelchair or with my crutches you can see the wheelchair or the crutches but you don't see what's going on underneath and you don't see the unpredictable nature of my disability. One minute I can be fine; the next I'm unconscious having a seizure or double bent pain. You don't see that I struggle with my cognitive function or washing my hair or the energy it takes to simply get dressed each day.

So what can be done to breakdown these barriers? Make buildings more accessible and for staff to be trained in supporting people with disbailties, produce information in alternative formats easier to obtain, support disabled people to access the care and support they need regardless of where they live or their age and less of the 'postcode lottery' when it comes to health and social care, for the public to be more aware of the barriers faced by people with disabilities, such as by not abusing disabled parking spaces and to see beyond the visibility of a person's disability/illness, for red cords in disable toilets not to be tied up (!) and for laws and legislations to be changed and made. (The list could go on!

Despite the many barriers I and many other people with disability face I will not let it stop me or define me. I must simply fight on. There is more to me than my disability.


A label can save a life

Card from ©Stickman Communications

There's been a lot in the news and on television lately about allergies and food labelling. 

Having an allergy to milk myself and intolerances to several foods including wheat, gluten and soya I have to careful with what I eat an drink. Because of this I rarely eat out and I often stick to the drinks I know I can have but it's very restrictive. 

Often when I ask for allergy information in cafés and restaurants staff either check for me or I'm given a book to check myself. Some of these books are easy to read and others are just so mind boggling to work out. 

With the recent allergy talk especially watching BBC's Watchdog and Tonight's: Food Allergies: What's Really in You Food?and finding out that not all cafés and restaurants are giving out current information it worries me and it makes me feel even more restricted because I wonder if I can trust the information I'm getting especially as I've often found that one time I can find something suitable that I can eat and then the ingredients in the food will have changed making it unsuitable so every time I double check even familiar things incase the ingredients have been changed. 

It's even more restrictive when you have multiple allergies and intolerances as one thing may be wheat free but it contains milk. I don't want to just stick to black coffee all the time and I should have a right to a choice when I eat and drink out and feel safe in the knowledge that I'm not going to fall ill.

I've grown up with my milk allergy since birth so I've gotten to  know the hidden allergens, e.g. whey powder as an example and adapting recipes when cooking. But not all places when you eat out understand that something like whey powder or margarine is a milk product.

It would be some much easier is menu's and food products had clear labelling saying "This products contains ______" and also staff being trained on knowing what in food and drink products or the allergy books where easier to read. Hopefully the law will change to make this compulsory and make it easier for allergy suffers to eat and drink safely and feel more able to eat and drink out.

Sunday, 2 December 2018

New glasses


So these are my new specs that I though I'd show off to you. It took over an hour sat in Specsavers trying to find the right frames that a) I liked (I desperately wanted some Cath Kidston ones) and b) ones that would fit my think lenses due to my dodgy vision and thick prisms. 

I picked up my new glasses Wednesday and putting them on it was like seeing in HD. I'm still keeping my old glasses with the smaller prism for days when my vision is better. It's also nice to have more than one pair of tinted lenses now. I've found having the tint so helpful to my photosensitivity (light sensitivity); it just calms everything down and makes light tolerable to my M.E. and headaches (though you will still see me indoors wearing my sunglasses).

Due to my muscle and nerve weakness I have bad eyesight which has worsened since I became ill - I've permanently worn glasses since I was about 12. And a symptom of FND is double vision which I have quite badly. I also have Scotopic Sensitivity Syndrome also known as Irlens so I also have a pair of purple tinted lenses for reading.

On my computer and phone thanks to assistive technology I also have tinted screens and reduced white point which makes life a lot easier.

I might do a post on Scotopic Sensitivity. So many post ideas - you should see al my draft posts I have on the go!




Saturday, 1 December 2018

One Second Every Day: November 2018 - Week 4


  • Monday 26th November - Had a nice long lay in and really didn't want to/struggled get out of bed. Had a slow morning as I'm having a high fatigue day so I just took my time and rested as that's all I could do. I managed to get dressed early afternoon as I had a care call and needed to nip out and at 2.15pm Rosie one of my carers came. We took a quick trip to Tesco to get a key cut for my Uncle Mark so he can get into the house for emergencies as he's named on my CareLink. We then quickly nipped into Tesco for batteries for my medication alarm box and to post some letters and PostCrossing postcards. We then headed home and Rosie made me a drink as I'd only had the energy to get off the sofa to make breakfast that day. Rosie made her notes and headed off. In the evening I managed to make two squares which caught me up as I made 4 yesterday and then I headed to bed.
  • Tuesday 27th November - Had the usual struggle to get up and out of bed. Had a rest morning/early afternoon in my pj's and then I got washed and dressed. I had a little recharge but had jobs to do so got a snack and then cleaned Flop out and did the dishwasher. I was tired out by this point so decided to do something low-key and did some of my crochet. I've made 2 squares today and sewn on 6 so making progress. I've been a bit wobbly on my legs today and had three falls. I'm now curled up in bed with a herbal tea hoping to get off to sleep soon as I have Bluebird at 11am so no lay in for me as I've normally been getting up round 10/11am so my aim is to be up by 9.30am (10am at the latest). All I really need to do is get up, get my meds for the day sorted, get breakfast and get dressed but when you're chronically ill all of this takes 10x longer and takes more energy/effort.
  • Wednesday 28th November - Managed to get up in time for my carer to come at 11am. It was Rosie today one of my favourite carers (though I love everyone in my care team). We had a good chat and I got some stuff off my mind which helped (and she braided my hair). I was feeling a bit tired but we managed to pick up my glasses from Specsavers and then we went for coffee for half an hour as it was busy in the pottery painting café and then we went back to the pottery painting place. I've been wanting to go pottery painting to make a few Christmas gifts and with my hairdressers appointment being canceled today it gave us the perfect opportunity. It was nice and relaxing. Painting done we headed home and I had some lunch. I fainted but thankfully Rosie was around. She left me on the sofa with everything around me. I've had a myoclonic seizure episode for about an hour and a half so I just rested on the sofa. I took fall down the stairs; I'm still unsure whether I blackout again of had a seizure but CareLink set off and the lady stayed on the line whilst I came round and crawled to the sofa where I could get some pain relief as my elbow and shoulder had subluxed/dislocated (not sure which). I'm now just waiting for Dad to come home. My shoulder is still painful as is my head from the stair fall but luckily I was bumshuffling down the stairs so it didn't do too much damage. I just rested for the rest of the evening and watched TV and did a bit more of my crochet.
  • Thursday 29th November - Went to my friend Abi's in the afternoon. To cut a long story short I had several episodes of seizures each getting longer in length which lead to Abi calling 111 for advice. A fast response car came followed by an ambulance to take me to A&E. Paramedics didn't follow my neurologist's care plan to give me IV diazepam so I went to A&E still having seizures. Several hours later I was still having seizures. I got extremely poor "care" in A&E including my arm being restrained to get a BP and very ignorant knowledge from staff about FND/non-epileptic seizures and the complications of my hypermobility (e.g. seizures equal dislocations). When Dad arrived the Dr took him into a side room away from me and was told I was told that I was faking my seizures; that I was attention seeking and needed psychiatric help and dismissed my Dad when he tried to explain FND to him so Dad's going to make a complaint. I got home after midnight feeling very out of it and exhausted. Abi stayed with me the whole time in A&E despite that fact I was unconscious. I can't take her enough for her being there for me.
  • Friday 30th November - I wasn't able to have much of a lay in as I had a hospital appointment. So I got up and got breakfasted, then washed (to get rid of the hospital yuck as I was too tired last night) and dressed and did my make-up then packed my bag and waited for patient transport who arrived just as I was on the phone to see where they was. It was then off to orthotics to get my knee brace fitted. The clinician I was seeing was running behind schedule so I called TASL to let them know and the receptionist made me a coffee and we chatted and I listed to some music (I'm in love with my wireless headphones). Unfortunately the knee brace that was ordered for me wasn't suitable - the clinician I saw was VERY knowledgeable of HSD/EDS and asked me how hypermobile my hands where which they are alongside the spasms so the pull on knee brace that was ordered wasn't suitable so he's ordered me a velcro wrap-around knee brace that will be easier to put on and off. Appointment over I was once again on the phone to TASL to let them know I was ready to go home when the crew turned up. Once home I rested and then got something to eat. Then when Dad got home we headed off out to the cinema to see 'The Crimes of Grindelwald'. It was a really good film, a sequel to 'Fantastic Beasts and Where to Find Them' and at the end it hinted to there being another film to follow. Home, snack, meds and then bed.

Gratitude List...
  • My friend Abi
  • My Dad
  • Rosie (this weeks carer)
  • Spending time with my Dad

Wednesday, 28 November 2018

November 2018 Birchbox


This month's Birchbox's theme was based on Disney's 'The Nutcracker and the Four Relms'.

Inside was...
  • A Spacemasks self-heating eye mask which is infused with jasmine. It was very relaxing and the heat really helped and its something I have already added into my shopping bag to buy and they would also make great gifts.(Full size - RRP £3.50)
  • A Manna Kadar cosmetics Dimond just Roller Eyeshadow in shade Pixie. Its really easy to apply, it can either go on as a solid colour which is like a super glittery pale pink or it can be blended with a brush to add shimmer over your eyeshadow. It can also be used as a highlighter or to add glitter to your lips. A little goes a long way so I can see this lasting quite a while. (Full size - RRP £15) 
  • A Paul & Joe foundation primer. I've not tried this out yet. (sample size)
  • A Polaar night cream, again not something I've used yet. (sample size)
  • A Beauty BLVD Hydra-Gel eye masks - two supplied. I've not used these yet either but I'm looking forward to trying them out. (full size - RRP £8.50)
 

Tuesday, 27 November 2018

One Second Every Day: November 2018 - Week 4


  • Monday 19th November - My carers turned up this morning rather than this afternoon without being notified thankfully I had dragged myself out of bed about half an hour before so I was awake. I just had a quiet day and got on with my crochet (not easy when your having myoclonic seizures!) and made a few phone calls on my to do list.
  • Tuesday 20th November - Had a quiet morning and early afternoon then at 3pm I went to the salon in the village for a massage and facial. I was in a lot of pain in the evening and ended up calling the GP surgery as my pain has been getting worse over the past few weeks so hopefully my GP will call me tomorrow. As the evening wore on my pain got worse and worse to the point I was close to tears which is not like me at all. Litrarally everything hurt - my stomach, my muscles, my joints, my bones and my nerves. Everything. My integrative medicine Dr hd sent me some special herbal digestive tea and Mandy made me a hot water bottle and too some oramorph and I curled up on the sofa watching old episodes of Bake Off on Netflix. Eventually I was comfortable enough to head the bed but it too me a while to get comfortable and off to sleep.
  • Wednesday 21st November - I had my Bluebird visit this morning. My carer turned up earlier than expected. I had a little seizure with my carer, it only lasted a few minutes so I took some pain relief and my inhaler and rested afterwards. I managed to get one box sorted and put away in my bedroom so it's slowly getting tidier. I had a quiet afternoon and Pinterest has also made it easier to organise things so I spent quite a bit of time organising my Pinterest; if only I could do that with my life! Then in the evening I went to church for Week 5 of the Bible study course. I'm really enjoying the course and its helping me to understand the bible better and it nice to ask questions and share ideas with other Christians. 
  • Thursday 22nd November - I really struggled to get of to sleep despite being exhausted and only got off to sleep in the early hours so I did some blog admin. I set up an online form to hopefully try and make it easier for people to submit and share their stories. I also shared all my posts to my Pinterest blog board. I really struggled to get up again and when I got up I was a bit wobbly on my legs and my knee dislocated and my sock slipped and I fell to the floor dislocating my shoulder. Both joints went back in but I was in the kitchen so there was nothing to use to pull myself up and I was too weak to do anything anyway. Thankfully my CareLink alarm went off when I fell and the lady stayed with me as I tried and failed to get up so she arranged for the Rapid Response Team to come out to help me out. They came and I wasn't waiting too long for them and they used a special machine to get me up an got me some of my pain relief and some breakfast and I'm now just resting on the sofa watching TV. My support workers from L&H home was meant to come at 11am but I emailed my support worker to let them know about my fall so she's going to reschedule the appointment. I was meant to meet a friend for coffee but I've rescheduled that too for the weekend as the district nurse was meant to come out to me today but she rang me and she's not going to come today as she was going to do a continence assessment but as I'm already under the continence team it would just complicate matter and she asked me about my pressure sores which are okay at the moment and I said my physio gave me some exercises to prevent them and she also going to make some enquiries about falls prevention like physio as I'm too young *apparently* for the specialist falls clinic so she's going to make some enquiries and get back to me and she said that if I ever have any issues or need blood taking and can't make it to the GP practice to just pick up the phone. My plan is to just rest today and get some replies done on some letters as I have a pile stacking up. I might also do a sticker by number if I feel up to it if I get bored of the TV. Didn't;t manage the sticker-by-numbers but did get a couple of replies written before bed and managed to do some crochet. I now have done 11x14 squares plus 4 sewn on. I'm just hoping I get done on time.
  • Friday 23d November - Woke up with my phone ringing and had a half-asleep-must-have-sounded-drunk phone call with my care co-ordinator. Calling PALS yesterday did the trick in getting contact from him. Finally got out of bed and had a pj morning and then in the afternoon I dragged myself upstairs to get some clothes on. Had a quiet afternoon with my crochet and the TV on in the background (can't quite recall what I watched). My GP called me and I explained how my symptoms have been getting worse and also my pain so he said to monitor how my extra oramorph I'm taking over the next week so he can adjust my zomorph dose. I then got my bag ready and at 5.20pm I began my wait for patient transport. Just when I was on the phone to TASL they turned up. Dad and Mandy are away this weekend for a family get together so I let CareLink know that if there was an emergency it would either be the Rapid Response Tam or 999 if there was any emergencies. My friend who on the ward at the moment came and sat with me in radiology for a bit which was nice as I haven't seen her for ages. I'm hoping to meet her tomorrow in the café. They was originally going to do my CT scan in the mobile unit outside but with my seizures they decided it would be safer to do my scan in the main radiology unit just in case. Thankfully nothing happened but I was getting a bit sensory overwhelmed and because I'd had to fast my blood sugars where probably low so my myoclonic seizures started to play up so it was hard to stay still in the scanner. Scan done it once again on the phone the TASL to let them know I was ready to go home the crew turned up. Once I got home I got myself a snack and watched some TV. I always hate it when Dad and Mandy are away. I literally glue myself to the sofa to prevent any incidents like falls and I know I'm safe there should I have a seizure. I was considering sleeping on the sofa but I've manage to get myself into my pjs and into bed so I'm just going to settle down with some Netflix as I never sleep well when I'm alone and I can't put the burglar alarm on as Flop sets it off!
  • Saturday 24th November - Struggled to get out of bed as usual but needed to be up for my carer coming at 11am. Carer came and went and I had some lunch, did my make-up. I'd love to do my make up more but it takes such a lot of energy to do and it's trying to find ways of holding the brushes when your hands are in spasm. Anyway, running late I met a friend for coffee. She's currently in hospital so we met in the hospital cafe and then we went up to her room on the ward and spent ages catching up. I was starting to get quite tired so I headed home. I took my meds and got some tea on and settled down on the sofa. A little later on I started to feel a seizure come on; I'd been twitching (myoclonic seizures) all afternoon, so I pressed my CareLink. I had several tonic-clonic seizure episodes but when I did come round I was in rigid spasm from head to toe and having full body myoclonic seizures and I was in a heck of a lot of pain and I couldn't move to get any pain relief. Thankfully my bag was next to me so I managed to get my inhaler but I couldn't get my pain meds. The seizures and spasms continued and the lovely lady on CareLink stayed with me and then she arranged for an ambulance to come out to me and she stayed with me until the paramedics arrived. I'm full of gratitude for CareLink. The paramedics arrived and I was insistent that I didn't want to go to A&E. They got me on some Entonox for the pain which helped and then they got me some of my co-codamol made up and once the pain settled they helped sit me up and they when the pain and spasms eased some more they got me onto the sofa and we went through the paperwork. They did my obs - blood pressure, temp, pulse and O2 levels, blood sugars, ECG etc. They wasn't happy for me to be home alone, just in case I had more seizures but also because of the side effects from the Entonox so I got them to call my step-sister. Throughout this whole things my seiche had totally gone weird. My stuttering and loosing words was the worst its been. Once the paramedics where happy with things they left me with Beth with instructions that if I did have any more seizures to call 999. I did have one small seizure after they left but we decided not to call 999 as it was only a little one but if they got worse we would follow their guidance. Beth was brilliant; she made me a hot drink and helped me with my meds and taking things upstairs and when I felt settled I let her get off home and I went upstairs to settle in bed and watch some Netflix.
  • Sunday 25th November - I slept for pretty much the whole morning. pain wise I've struggled today. I't not been acute pain but just that horrible background pain that won't go away. Crocheting helped and I get 4 squares made and quite a few sewn onto the blanket. In the evening I had a seizure/spasm episode but Dad and Mandy was home by this point. I'm now settled in bed exhausted so I'm just going to play some Netflix and hopefully get comfortable and nod off.


Gratitude List...
  • CareLink, the NHS, Bluebird, the Rapid Response Team and TASL
  • Coffee and catch-ups with friends
  • My stepsister Beth


Monday, 19 November 2018

One Second Every Day: November 2018 - Week 3

  • Monday 12th November - I had a nice lay in this morning but struggling to get up. My fatigue levels where quite high and I felt more tired than when I went to bed, well, that's M.E. for you! I had extended pj wearing and watched TV and laid on the sofa. I then summed up the energy to get washed and dressed and got some lunch. I then felt a seizure coming on and debating whether or not to press my CareLink I decided that's what they're there for so I pressed it and the call handler stayed on the line with me whilst I had my seizure and recovered from it which felt very reassuring and he kept reminding me that it was okay and that's what he's there for. I then had a little nap. When I felt a bit better I needed to get on with my blanket as I hadn't done anything on it yet today so I stitched in some squares and also weaved in some loose ends which is a laborious job so though I didn't;t get any squares made it all adds up. I then had to put my crochet down as after tea my stomach pain and nausea flared up big time so I took some meds and curled up in a ball with my heat pad on the sofa watching TV waiting for the meds and heat to kick in as I jus wanted to cry from the pain which is unlike me at all.
  • Tuesday 13th November - Due to pain I didn't get off to sleep until the early hours so I kept myself distracted with some blogging and blog admin and watching some stuff on my laptop and listening to a bit of Harry Potter. Unfortunately I couldn't sleep in as I had an home visit appointment at 10.30am only for it to be canceled but I was still in my pjs when I got the cancellation so I stayed in my pjs for the morning and watched some TV and got on with some crochet and had cuddles with Flop. My Birchbox for this month also got delivered which I always look forward to and there's some lovely things in there I can't wait to try out and I'm going to get round this week to get back into making a monthly blog post about my month's Birchbox. I then got washed and dressed in the afternoon and though I was going nowhere I decided to put on some make-up, this took me a couple of hours to do in total - there's no such things as getting quickly washed and dressed and ready for the day when you have a chronic illness but it needed to be done as I have a busy next few days so won't have the energy to get washed, oh the joys of chronic fatigue and payback. Having to decide where best to spend the little energy, high levels of pain and low motivation that you have. I then got something to at and had a lay down on the sofa. I then managed to get my third square crocheted and decided that was my limit for the day. I did set myself the quota of 3 square a day and any more would be a bonus. After a rest I regained some energy to do a little bit of tidying in my room and then it was tea time. After tea my stomach pain flared up again, but thankfully not as bad as yesterday. Dad and Mandy then went out to the cinema. When I went into the kitchen to get a drink I fainted which triggered the impact detector on my CareLink and the lady stayed with me as I came round enough to bum shuffle to the sofa and feel settled enough for her to end the call. I was in quite a bit of pain after my fall but I wasn't up to going to the kitchen for a drink and to fetch my meds, I did manage it after a while but incidents like thins only highlight why I need the extra care and I'm not sure if CareLink document every time I make contact with them as that would be great supporting evidence. I'm now tucked up in bed as I was nodding off in front of the TV downstairs. I'm still in a bit of pain but I'm hoping I'll have a better night's sleep as I have a busy day tomorrow and I need all the energy I can get.
  • Wednesday 14th November - Totally overdid myself today. At 12pm my carer came and we headed off to Specsavers and we as in there well over and hour just getting my new glasses sorted, I'm so glad that I didn't;t get my eye test done as we would have totally run out of time. I was planning on heading to the pet store to buy some things for Flop but I was getting tired and we had run out of time. I got home and Mandy put on some soup which she had made for me to do my lentil Low FODMAP trial. I was about to crash out on the sofa when my phone reminded me that I was due at the gym for an induction with my support worker in half an hour so I quickly got myself changed and Mandy thankfully was able to drop me off. I though the induction would just be some paperwork and explanation of the toning suite equipment (assisted exercise machines), but no, it was to try out each machine. My body hadn't had such a work out in about 5 years; each machine runs for 6 minutes, half way round I was flagging and only managed 2 minutes out of the 6 but me being me I pushed myself as I just wanted to get the induction done. Exercise machine just about completed we sat down to make some notes and do the paperwork and book in when I started to feel a seizure come on. Due panic as I was in a new and public place, plus I didn't want the gym to stop me from going. I ended up going into status seizures and an ambulance was called. It took 20mg of diazepam for my seizures to subside. The paramedics gave me some IV paracetamol but I was still in a lot of pain but they couldn't give me anything more as I'd had the diazepam. We then got to A&E and it was the usual long wait to be seen by the Dr; in the mean time I was left in pain and as I was a "complex case" the nurse's could do anything without me seeing the Dr so I was left, as usual in pain. I saw the Dr and again as usual they have very little understanding of my illnesses and also how seizures and hypermobilty don't mix and how I personally present when I'm in pain - outwardly I seem "fine" but inside I shouting/screaming/sobbing in pain. My right shoulder and hip was very lax as that was the side I was having my myoclonic seizures on in-between my tonic-clonic seizures and they're lax without all the time anyway because of the myoclonic/tonic-clonic seizures so they kept slipping in and out causing me the most pain. The Dr ordered some x-rays to make sure they was in place correctly and there was no fractures and they came back okay. As usual the medication plan that the Dr and I came up with got changed by the time the nurse came to me with the meds. I was discharged but still in a heck of a lot of pain so I took some co-codamol then at 10pm I took my zomorph but I ended up still calling GP out-of-hours as I was in a lot of pain despite maxing out on everything I could. They said I could take an extra half dose of oramorph early just to try and get me comfortable. I didn't;t sleep great due to the pain so just sat and watched stuff on my laptop as a distraction and took my PRN meds the every 4 hours I could and I also had my heated blanket on to try and help the pain as my pain was literally just all over - in all my muscles and joints. It wasn't nice at all and it was hard to concentrate on my laptop as I just couldn't;t get comfortable and I just felt so low and frustrated and upset and I was also feeling so embarrassed and I hate fuss and my head just kept going over how much fuss I caused the gym and how embarrassed I felt. Its times like that when I hate being chronically ill and I feel 'sick and tired of being sick and tired' and just wanting my old life back and just feeling so controlled by my health.
  • Thursday 15th November - Got up this morning and struggled to get out of bed. My main mission was to get ready to go to my appointment at Orchard Barn at 12pm so it was out of bed, meds, washed and dressed, breakfast, make-up and then out the door. I was running a bit behind schedule but I made it there on time and Dr Sally was running a bit late anyway. I had my follow-up with Dr Sally, I've been on my homeopathic/herbal medicines/food supplements she presribed about 4 weeks now and i've started to notice some subtle changes. Nothing major but less debilitating fatigue, less spasms in my legs for example. I'm giving Intergrative Medicine a try to see if it helps at all and if it does;t work out at least I can say I've tried and I'm trying so so hard to help myself. What I discussed with Dr Sally about the gym is its hard to het a balance between my M.E. and my hypermobilty as the gym will hep my hypermobility but I don't want to worsen my M.E. so I'm going to give it a go; start of doing 1-2 minutes on each machine and build myself up and if it worsens my M.E. again I can say I tried. I also said I've los y confidence with the gym and going out following seizures in public but my support worker is going to go with me the first 5/6 times to get my confidence up going to the gym so hopefully her being there will help. I nearly cancelled my appointment today as my confidence leaving the house took a blow. After seeing Dr Sally I tried something called Bowen Therapy which Dr Sally recommended. I'm not sold instantly on it but it was my first time so I may try it again, the therapist said it usually needs a course of 3 or 4 session to get the benefits. If you click on Bowen Therapy here I've put a link which explains what it is. When I got home I had something to eat and took some pain relief and I had a rest and then did some tidying away in my room and wrote out some postcards. After tea I was starting to crash so Mandy and I sat and watched some Desperate Housewives. I had a migraine brewing so I took some Sumatriptan to nip it in the bud. I've been getting panicky about getting my crochet blanket done on time. I've managed to get 2 squares made this evening. I'm now in bed and I've caught up with this post as I didn't type in yesterday's write up. I'm now going to top up with some more pain relief, just in my pj's and hopefully get some sleep. My CEA card arrived today so I've made plans with Abi to got to the cinema tomorrow evening but I'm looking forward to a day of nothing tomorrow so I can properly rest as PEM is starting to get the better of me. 
  • Friday 16th November - Quietly productive day. Got up at at 10am after a super bad night. Didn't get of to sleep until about 3/4am due to really high pain levels. I literally exhausted all options - heat, TENS machine, pain meds. I just felt like crying as I was just so exhausted and wanted to sleep but pain had other ideas. In the morning I just chilled out on the sofa in my pjs then got dressed at midday and chilled out for a bit more before getting a wash; then I got something to eat and then did my makeup and then it was time to leave the house. I met me friend Abi in Starbucks for a drink; I went for a caramel frappuccino and we had a long time needed catch up before heading over the road to the cinema. We saw The Nutcracker and the Four Relms. It was good and different to what I expected. It was nice to get out the house. I've been out a far bit this week!  Next week is much quieter so I can catch up on some much needed rest. I was struggling to stay awake during the film and I hadn't had chance to nap during the day. Thankfully the film shown was at 6:05pm and it wasn't a long film so when I got home I sat with Dad and crocheted a square which meant I'd managed to make two today as I made on this morning so not quite my three target but better than nothing and then I'm now just heading to bed for an early night.
  • Saturday 17th November - Struggled with sleep despite being utterly exhausted due to pain and it was that horrible generalised all over in every bone, muscle, nerve and joint kind of pain and I was just wanting to cry so I had a self-care day. Had a pj morning and watched TV and did some crochet. I've managed to get 4 squares made today so that's caught me up. I was going to sew some squares onto the blanket but I was getting too tired and brain fogged. In the evening Dad and I watched an episode of 'Call The Sheriffs' on TV which was nice as he's been busy writing reports onto of the usual school work (he's a teacher) so I haven't spent much time with him. I had a couple of tonic-clonic seizures today, probably because I was tired and in pain. Just before bed I watched an old episode of 'The Great British Bake Off' on Netflix and now I'm heading to bed. 
  • Sunday 18th November - Didn't make it to church due to back pain and brain fog and I just knew that I'd be sat struggling to get comfortable and concentrate so I thought staying at home would be better where I could sit with my heat pad and watch some easy watching Bake Off on Netflix that didn't require too much brain power. I had a pj morning then got dressed. Washing was just too many spoons* (* see post on spoon theory). After taking some oramorph for my pain it helped. I just spent the afternoon resting and watching Bake Off and Extreme Cake Makers (I must have been in a cake mood). I keep meaning to bake some fairy cakes as I like the decorating part but I haven't done any baking since I've gone wheat/gluten free and I haven't had the energy/motivation and Mandy/Dad have been quite busy to help me with the oven so there's been an accumulation of factors that stopped me from baking. I also cleaned Flop out. It's very easy and Dad gave me a hand, it only takes about 10/15 minutes and I also YouTubed how to clip his claws so Dad and I did that as they where quite long when we got him so it felt nice to give hime a nice clan cage and a pedicure and he was fairly well behaved for it. In the evening I stitched 10 squares onto my blanket. Getting my blanket out I realised that I hadn't quite done 12x12 squares so I a bit further behind than I thought but I'm still making good progress. I've been feeling a bit low this evening; feeling frustrated at being chronically ill and not able to do the things I used to be able to do and also yesterday there was a meet up of people from the YoungMinds VIK project and traveling to London was just and impossibility for me and there was talk of me saying hello to everyone digitally but that plan didn't happen about so I felt upset and a bit angry as I felt forgotten about and also upset and angry that I couldn't be there in person because of my health so I'm just trying to take my mind off it and not let it get to me too much as one of my downfalls is over-personalising everything. I might make a start on typing some letters if I can't sleep but if not it will be something to do next week to keep me occupied.


Gratitude List...
  • Cinema trips with friends
  • My family
  • Carers and CareLink
  • Flop
  • Being able to see Dr Sally on Thursday
  • Quiet days in where I can rest and recharge

Monday, 12 November 2018

One Second Every Day: November 2018 - Week 1 & 2



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


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