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

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: 
Ella's blog can be found at:

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