Thursday, 17 October 2019

GUEST POST by Lena for Invisible Disabilities Week 2019

This was originally going to be a very different blog than it is now. I’ve thought long and hard about what I most want people to know about living with invisible disabilities. First I was going to tell you about the struggle to get diagnosed, then I was going to do a list of things not to say to someone with an Invisible disability or illness. You’ll get to read those one day, but this is much more important in my opinion. 

I am here to talk to you about Invisible disabilities and depression. When you look at me you see a healthy 28 year old woman. You see a wife, a dog mom, an administrative assistant, and a blogger. Here’s a sneak peek at what you aren’t seeing.
  • My parents were told I would not make it to 5 years old.
  • Was told I would not make it to 18 years old.
  • I was told I would never get to go to college, get married or have kids. 


This knowledge broke me. Imagine walking through life with an expiration date. A person should not know even a rough estimate of when they are going to die. I did not take anything in life as seriously as I should because I was going to die anyway. The future wasn’t real to me, it was a fictional thing I was not meant to experience. I didn’t plan on adulthood, I didn’t expect to see it and did not prepare myself for it. When it was time to go to college I dropped out twice because I was gonna die anyway. 

Fortunately, I am alive. I am 28 and very healthy thanks to medical advancements in Cystic Fibrosis, and the diagnosis and treatment of my Lupus which was a mystery to us for 14 years. I’ll admit there were huge set backs and terrifying days, weeks, and months over the years. There were hospitalisations I was sure would be the beginning of the end for me, but by God’s Grace, a wonderful family, and doctors who didn’t give up on me, I’m here. I am alive. 

Being here isn’t the miracle it sounds like for me. I am broken now. I have ever lasting diagnoses that I will have to monitor for the rest of my life. Taking medicine every day for less than 20 years wasn’t daunting to me, but taking it every day for the last 28, and the next 50 or 60 is daunting. I don’t have the free time to accomplish the things everyone else does because of this, I spend hours everyday maintaining my ability to simply live. The idea that I may never go two or three months without seeing a doctor or getting blood work breaks my heart. I am blessed to be here, but it’s exhausting.

I look healthy though, so people expect me to have accomplished and succeeded at as much as they have in life at my age. They don’t see that I couldn’t walk around a grocery store on my own for 2 years. They don’t see when my husband had to brush my hair. They don’t see the days, weeks, and months I obsessed over the things I would do if I ever felt better. They don’t see the hours I cry each week because I feel I am wasting my newfound health.

I hate meeting new people because I have to tell them I’m just an Administrative Assistant. I hate getting to know someone because how do I explain the 4.5 years of my adult life where I fought my body every day? How do I tell them I don’t have kids yet not because I don’t want them but because up until recently we were certain I and the baby would die if I were to get pregnant? How do you cover any of these subjects in light conversation? So I am left under-sharing and seeming off-putting, or over-sharing and seeming needy. There is no winning socially when you have an invisible disability or illness hiding inside you. 

Now I’m 28 years old and I am so painfully aware that I want more. I want so much more. I want to be the wife my husband deserves. I want a career, not a job. I want hobbies. I want friends. I want to feel like I am a part of literally anything, because I never have been. I am awake now, and it’s a nightmare. Every minute of every day all I can think is how much of my life has been wasted fighting my invisible illnesses and how much more of it will be spent that exact same way. 

Living a life with Invisible Disabilities is a nightmare I would never wish on anyone. This depression eats you. This is the reality of life with an invisible disability. Now I am faced with an almost insurmountable challenge. Living boldly, and building the life I want to have despite my . It’s the scariest thing I’ve ever faced, way more terrifying than port-a-caths and hospital beds.

Tuesday, 15 October 2019

GUEST POST by The Kiwi Spoonie // Invisible Disabilities Week 2019

I'm the Kiwi Spoonie, some of you might know me as the blogger and Instagrammer who posts about Ehlers-Danlos Syndrome and chronic illness. On the internet, I'm visible (though still a small-timer!) as a chronic illness advocate, trying to make some noise for silent, invisible illness. 

In real life, however, I'm the girl on crutches that not many people understand. I have Ehlers-Danlos Syndrome, which has caused chronic soft tissue injury and nerve damage in my lower back, affecting my left hip and leg. So I can't walk properly. Nothing really happened to cause this. There were a few events leading up to my back being this way, but it boils down to just plain bad genetics. I was born this way. I can't say "I fell down a skii slope" or "I was in a car crash" when people ask "what happened". 

People see me, they see they crutches and they assume that being a young, reasonably healthy and fit-looking woman, I must have just injured myself and I'll be getting better. When I stumble through an answer that confirms no, I may never recover, I hate seeing their faces drop. I stumble through this answer, because most of what they are asking about, they can't see. It's Invisible. To me, the leg and hip are only a tiny part of my problems. 

Let be give you a few examples of what you can't see: 

CCI - Cervical Cranial Instability

Essentially, my neck is unstable. For me this means that I have nerves in my neck that are being compressed, muscles that are spasming all over the place, and blood flow to my brain being compromised. All because the bones move too much. It's not so severe that I have to wear a neck brace all the time though. And I haven't had surgery, so no scar. You can't see it. But boy, can I feel it. It causes me constant chronic pain to the level that I need opioids. It overbalances me. It further limits my choice of activity. And You can't see it. 

POTS - Postural Orthostatic Tachycardia Syndrome

A common complication of EDS. In brief terms it's a heart that pumps too fast on changes in posture as well as having a nervous system that doesn't react properly to changes like hot or cold whether. It affects every minute of every day of my life. It's had me bed-bound. It means constant chronic fatigue. And no, I don't mean just tired. I can't have a general anaesthetic unless I wan't 8 weeks stuck flat on my back afterwards. And you can't see that. 

MCAD - Mast Cell Activation Disorder

Another common complication of EDS. An allergy condition which can cause me to have a strong immune reaction to literally anything. Though I have been lucky enough to avoid anaphylaxis so far, I have to carry an EPI-pen just in case. For me it means being very limited in what I can eat, breathe, and use on my skin. It also means living in constant fear of the unknown. Imagine eating out and being nervous just because you don't know what brand of soy-sauce is on your chicken? And you can't see that. 

Those are just a few of the things you can't see. 

So when you see someone with a mobility aid and they say they have Ehlers-Danlos Syndrome - please do not assume the crutches or part-time wheelchair is their only hinderance. Every second of every day of our lives is taken up by so much that you can't see. We fight so hard, and we make it look easy. And you can't see that.

Monday, 14 October 2019

NICPM Update // 14th October 2019

So just to start off I won't be doing weekly updates as a) my health is so up and down and b) I'll be very busy with my care whilst I'm here and I want to focus on that most importantly.

So I arrived here on Thursday 10th October. The first few weeks here are me just settling in and the staff get to know me and my needs and how I normally function.

Friday wasn't the best day. I had a prolonged seizure in the shower (yep my brain picks some really great timings!) and they had the call for an ambulance and the paramedics treated me and the nurses appallingly, but one of the staff members is going to make a complaint and they said they'd support me to make one too.

The weekend was quite quiet. I managed to write a couple of letters. On Saturday I met with one of the hospital chaplains. One of the nurses also helped me unpack so I feel a bit more settled in. I wasn't well yesterday; I had a horrendous migraine and I'm still feel ill today (Monday) and I've found it hard to eat today.

One things that has been really nice is another patient sent me a card to say hello which was really sweet of her.

Today has been busy and quite overwhelming, especially as I wasn't told of what would be happening today which is something that helps me.

So today I've had a chat with the Dr - I've seen two of the Drs in my care team so far and they've been having little chats with me finding out about me, my needs, history, what symptoms are the most problematic for me at the moment etc.

I've also met with the dietician which was the main thing I wanted to happen this week as my meals have been a bit repetitive and limited, plus I needed to sort out my nutritional supplements,

Also today I've have a whole bunch of bloods taken as well as an ECG.

One of the things they do here is each day I'm allocated a key worker and I get given some 1:1 time with them to do what I want.

This evening I've just asked for a bit of quiet down time so I'm just sat updating my blog with my new zebra hotter bottle.

In my room I have a giant notice board like I have at home an I packed my jazzy push pins.

During the week each day they have a group activity. The student nurse today for the group activity was to have a bit of a pamper with homemade face masks which I've never done before. I wasn't up to joining people in the lounge so the student nurse came to my room and helped me put the face mask on and then wash it off.

Here they have a very holistic approach. I feel a nuisance calling the buzzer even for small things but the staff are fine with it and so far all the staff have been amazing and so supportive and it's nice to have the care an support and to not be struggling with even basic tasks.

I'll try and keep you updated as much as possible but as I said at the beginning my main focus is on my treatment here.

Bye for now.
Naomi

Sunday, 13 October 2019

Having an Invisible Disability

My health problems are real, even though other people can't see it and what others do see, like my wheelchair or crutches or orthotics is on a tiny fraction of what I'm dealing with. Things like pain and fatigue and all my other symptoms, like a dislocated joint (unless I'm waving around a x-ray), migraines, hypersensitivity, depression/anxiety and autistic traits can't be seen, only invisibly felt or experienced.

"You don't look sick" I've lost count how many times I've heard that over the years. It's not a compliment when someones says those words to you. Those words I find so funstrating to hear as I wish I could hand over a box of all my invisible suffering and it makes it hard for your suffering and trying to have your ill health taken seriously.

"Looking well" takes a heck of a lot of effort and it can be a burden to seem "okay" to the outside well and it's almost something you have to do because you have to live out your life through your suffering. If you spent your days acting out your internal sickness you would never get anywhere.

Often care professionals don't take your symptoms, like pain, seriously because you've become so accustomed to masking and living with them. Even when I've been rushed into A&E with something like a badly dislocated hip internally I'm shouting/screaming/crying, but I've learnt that that get's me nowhere, so I quietly and subtly deal with the pain and she I'm asked how I'd score my pain I'm not believed because I'm not shouting or screaming or crying.

People around you question you, why are you not "trying hard enough" or "pushing yourself" to get a job (or some other part of adulating) because you "look" capable of working. When in fact they only see me, which is briefly, is when I'm having a "well" moment because I've rested and recharged and tried my hared to summon my "functioning human" mode to meet that person. And then when they leave I can go back to my usual position of being curled up in a ball on the sofa too tied to lift my head ill mode externalising what my body s screaming about internally.

And even though I'm a pacifist when people tell me "you don't look sick" or "you need to try harder" what you really what to do is punch them.

It's okay to not feel okay. And if you want to get upset or angry then go for it!

There is no stereotypically "ill person" - 19% so almost 1 on 5 working aged people in the UK are disabled (Scope) and the vast majority of those people's disability will be largely invisible. Each person's disability is unique to them; even two people with the same illness will not have the same difficulties as one another.

Links and References

Sunday, 6 October 2019

Big News!!!

So n Friday I got the news I've been waiting a long time for. I have bed at the neuro-rehab unit in Leeds and I will be admitted on Thursday!

Back when I first net my neurologist in 2017 he wanted me to go there and since then my health has declined. The process of applying or funding was delayed as no one locally knew who was responsible to ask the CCG for funding. Finally when I got my independent advocate she made it clear ro my GP that it was his responsibility and she ensured he did send of the request to the CCG. Initially the request was denied as they wanted more information so with more information and a reappear the funded was granted, but the CCG would only give 6 months then after that time we'd have to reapply. I spoke with my neurologist and MP to try and contact the CCG to extend that 6 months but the unit in Leeds was also aware of the time limit we had too. The funding was going to run out on the 2nd November so I got the bed just in time.

Since Friday I've been feeling quite anxious and I've made a start on packing and there are a lot of emails and phone calls I've made and I've got on my to do list for tomorrow.

It won't be a magic fix for me but it will give me much needed support and hopefully get some management and even some improvement of some of my symptoms. I'm also looking forward to being around staff who understand my illnesses and being with other patients who have similar health struggles.

I will try and keep you updated as much as possible whilst I'm there but obviously I'll be busy with treatment and then resting and recharging in-between.

Thursday, 3 October 2019

One Second Every Day - September: Week 4 // 2019



Monday 23rd September

Today's been unfortunately eventful. I had my carer come and I had a seizure in the shower. I then had another seizure on the bathroom floor an another in bedroom; each getting longer in length. By my third seizure it was fairly long so my carer called for an ambulance.
The paramedics came and weren't happy with how fast my heart rate was and wanted me to go to A&E but I knew there would be little A&E can do so I stayed at home.
My carer got me my meds and some lunch and helped me with a few other bits. My care agency wanted her to stay until Dad got home but that would have been hours and all I wanted to do was sleep and there was no point my carer hanging around.
I had a sleep for a while until Dad came home and he made tea (evening meal) and we watched some TV.
I called TASL patient transport to get a pick up time for my appointment in London tomorrow but there was no record of my journey! That got me in a bit of a panic as I felt unsettled with he change of plan but also having to cancel and rearranged my appointment.


Tuesday 24th September

I was supposed to be in London today but there was a mix-up with patient transport so I feel a bit unsettled with the change to routine. I called the Pain Clinic/hospital this morning and thankfully they had an appointment for next Monday - I was expecting to waiting until February/March time!
My mum called to say she was passing by and asked if I was free for a coffee so she and her carer popped round for a short while.
I had a sleep for a while as I've been quite tired today.
My pain levels are still a bit of a struggle.


Wednesday 25th September

Today's been a slow kind of day. I spent a while in my pj's as I had no one to tell me to get dressed and I enjoyed the quietness and freedom of having the house to myself. I had a sleep and then it was tea time. After tea I watched some TV and  then I settled myself in bed with my laptop which is where I am now and I'm feeling quite tired so I'm ready to get off to sleep.

Thursday 26th September

Had my care visit today, thankfully it was drama free today.
One really big positive of today is I got a phone call from the neuro-rehab unit in Leeds to do the first half of my pre-assessment. The nurse started off explained a bit about the unit and the programme and then asking me what my needs are. I was getting quite tired talking especially after having a shower today so she's going to call me back Sunday to do the second part.


Friday 27th September

(Forgot to fill in today)

Saturday 28th September

This afternoon I went out with mum. First stop was coffee. We then went and had a good look around The Range. Totally broke my stationary and craft buying ban but I should have enough to keep me going for a good while. 
We got back to mum and Fred's house (Fred is mum's husband) and I had a rest on the sofa. After eating we sat and watched Silent Witness and it was a nice but super exhausting day.

Sunday 29th September

This was my recharge day ready to head to London take 2 tomorrow.
Felling quite run-down today. For me with my PEM (Post Exertion Malaise - a symptom of M.E.) my immune system flares up. I have come across another name for PEM which is PENE which is Post Exertion Neuroimmune Exhaution which factors in the low immunity response or cold/flu-like symptoms when exhausted following activity.
Unfortunately today the nurse from the rehab ward in Leeds didn't call me back.

Monday 30th September

Managed to wake up on time. Patient transport came on time and we had avoided any major problems there and back.
My appointment/assessment with the Pain Clinic went really well. I felt really involved and included in the conversation and listened to in what I felt I needed and what where my main problems and concerns. We have a plan but it all depends on the outcome of their MDT meeting (Multi-Disciplinary Team, basically lots of different professionals from different backgrounds such as Drs, physiotherapist, occupational therapists, psychologists etc).

Video Description

  • Monday: Photograph of an ECG reading, The paper is a long thin strip which is white and red graph paper and black heart tracings.
  • Tuesday: Looking out the window with it raining outside. Out the window can be seen a lawn with a patch going through, a driveway and garages.
  • Wednesday: Folding a mini envelop. The paper is patterned teal and white.
  • Thursday: Putting a sticker onto a decorated red envelope. The envelop is decorated with white torn paper in the bottom left corner on top is torn patterned paper and another vintage stamp style sticker already stuck on.
  • Friday: Using a wooden stamp to print 'hello' in blue on an envelope
  • Saturday: A small sinclair c5 type vehicle driving in front of us on the road
  • Sunday: Opening the latch to a plastic box
  • Monday: Pressing the 'Level 0' button in the lift

Wednesday, 2 October 2019

GUEST POST by Mark on Disability and Searching for Faith

I had a stroke in my mother's womb and as a result I was born with paralysis down the right-hand side of my body. No operation could 'fix' me and only intensive physiotherapy in childhood could help improve the functionality of those muscles that had been weakened by the stroke.

I 'coped' reletivly well into adulthood. I went to University and had a career working as an IT as well as being a qualify lecturer working in Further Education teaching adults with dyslexia.

However, eight years ago, aged 35, I suffered what I can only described as a 'second stroke' that caused immense pain in my muscles and severely affected my mental state. I've read that people born with disabilities have difficulty coping as adults when their condition worsens. This was defiantly true in my case. I had to stop working and concentrate on recovery. However, I entered into a black hole of depression and as a consequence made some very poor life choices.

By the time I turned 40, I was coping a lot better physically but mentally my mind still felt shattered. It was at this point that I decided the best way forward was to find faith in something I could believe in. I'd previously experimented with Buddhism and Christianity but never really felt  'connected' to either.
From a local library, I read about 30 faith-based books before I came across Quaker Faith & Practice. When I read the introduction and the first chapter, Advice & Queries, a tingle of excitement ran down my spine. I carried on reading and when I got to the page 'Ways of Seeking' I decided there and then I was going to be a Quaker.

What appealed to me the most is that the Quakers have no creed. There is nothing to say a Quaker must believe this or that. If you believe in God or not, it's your choice. Every Quaker must speak for themselves and seek their own spiritual path.

What binds Quakers together are the testimonies. These are most commonly referred to as SPICES:
  • Simplicity
  • Peace
  • Integretity
  • Community
  • Equality
  • Stewardship / Sustainability

Quakers live their everyday lives through these testimonies, interpreting them as they best see fit.

For me, it is the Equality testimony that I find most powerful. When the Quakers began in mid 17th century England, it was the Church that decided who should and shouldn't receive God's love. The Quakers rejected this and adopted the belief in Universal Love.

It may seem strange to think in this day and age, but at the time Universal Love was a highly controversial belief. This was because it took power away from the Church of England who claimed to have the authority, on behalf of God, to say who was and wasn’t worthy.

In essence, Universal Love means equality. You have an equal right to love and be loved in return no matter who you are. For me, I find an acceptance within the Quaker community that I've yet to experience elsewhere.

I'm now 43 and have been a Quaker for almost four years. My mental health has improved and I'm probably happier in my own skin than I have ever been. 

Sunday, 29 September 2019

GUEST POST by Mrs Migraine // Pain Awareness Month 2019

I am many things to many people. Mother, daughter, wife, friend. I am also living with several chronic health conditions including migraines. 

A migraine is a neurological disease that causes a variety of symptoms that exist along a spectrum. During attacks, I deal with visual auras, phantom smells, nausea, dizziness, sensitivity to light and sound, difficulty speaking, and incapacitating pain. I was diagnosed at age 5 and have experienced a worsening progression with age. I currently experience symptoms nearly every day and have been under the care of a headache specialist since 2016. 

I share my experiences as someone who is living with migraines on my Instagram @Mrs_Migraine, and my personal blog www.mrsmigraine.com.
“Pain is inevitable. Suffering is optional” - Buddhist Proverb
This quote resonates with me, especially during my most painful migraine attacks. Pain is a part of my life. Every. Single. Day. My chronic pain exists on a spectrum and not every attack is one that puts me on the cold, tiled floor of my bathroom. The effects of a chronic pain disorder can be far-reaching and long-lasting and it takes constant vigilance to avoid the suffering part of it.

Apart from dealing with the physical pain of migraines, a major struggle of this neurological disease has been with mental health and is one that many people don’t like to talk about. It’s tricky to delineate my actual disorder from mental struggles like depression and anxiety. Chronic pain conditions tend to add layers of emotion on top of all the normal stresses of life. Worry about when another attack will strike. Fear that I will make a choice that worsens my condition. Sadness for missing out on so much of life. Guilt that I require time and attention from my loved ones. Shame for the dreams I let go and for the woman I never became.

I have spent my fair share of time in therapy working through my emotions to dig into what they were teaching me. But as those with migraines can confirm, migraine attacks can bring about emotions like anger, intense sadness, or despair for no reason at all. These emotions can simply be part of a dysfunctional neurological disorder with no driving forces behind them. So instead of spinning my wheels to find the source, I had to learn how to sit with both physical and mental discomfort and be present in it. Emotional intelligence is much like any other skill and can be developed with time and practice. And while it is possible to go the self-help route, I find that working with a mental health professional has helped me steer clear of a major crisis. 

Even with devoted awareness to the effects pain has on my mental health, it is a daily struggle to carry the weight of this burden. I think many people are unaware that pain itself can actually be a legitimate source of trauma. The term PTSD is typically used when talking about going through an intensely stressful event that may also involve physical injury and pain. There have been documented reports from PTSD sufferers with increased levels of anxiety, stress, and fear as a result of experiencing excruciating physical pain. For those of us with a chronic pain disorder, we encounter this type of trauma on a regular basis and, quite often, without adequate pain control. It’s no wonder that we are 3 times more likely to suffer from depression!  

Regardless of the cause, we cannot become victims of circumstance. Our pain is inevitable and it will demand our attention. I’ve learned to be there for it. I’ve had to prioritize the management of my mental health, just as I do my physical health. I’ve learned to experience pain in all its forms and let go of it when it passes. And what I found was freedom (and a little bit of peace) in the spaces in between.

Thursday, 26 September 2019

GUEST POST by Dan // Pain Awareness Month 2019

Hi Everyone, firstly thanks for taking the time to check out this post. My name is Dan AKA @chronic_pain_guy on Instagram and I was asked to write something for this site. 

As a bit of an intro I have Fibromyalgia as part of this I have chronic pain, fatigue and all sorts of other fun stuff. I also suffer with migraines, anxiety and depression. Overall that makes a lot, along with a lot of tablets too.

The Instagram account is where it all started. I was off work sick for the second day in a row and was bored also feeling a bit isolated, so I thought I could start an account for a way to connect with people and as a bit of an outlet for me too. One big thing to know about me is that I try not to take too much seriously and if there is a joke in the situation I will find it. I use pictures and memes to express myself, showing what I am feeling and hopefully allowing others to find it funny but also relate.

My life with my pain

I have had symptoms of Fibromyalgia for years but was diagnosed near the end of last year, my pain had got dramatically worse and I spoke to my GP who suspected it and sent me for tests and then to specialists. It wasn’t a huge surprise and the more I researched the more I fit the bill. Also, my mother has been living with Fibro for many years and we suffer from some very similar symptoms as part of it. 

I work in a warehouse and have now had to change my duties completely to allow me to carry on working, although I have had a couple of difficult moments with my employer overall I’m very well supported and they have helped me carry on working. My days off are always recovery days and towards the end of the week things get tougher and tougher. I find my legs get very painful along with my back which makes standing tough. I will fully admit that the pain can make me snappy and moody, paingry is a really thing! Sometimes holding it in and not admitting the pain means it will escape like this.

This condition causes many worries
  • Will the pain carry on getting worse?
  • Will it means I have to leave my job?
  • Do people believe me?
  • What if I am crazy and it's in my head?
  • Will I pass this on to my son?
There will be many many more but that's the most regular ones.

What I would ask people to do?

  • Learn about the conditions and invisible illnesses, especially if you have friends or family with conditions.
  • Believe, it can be very hard but it's real you can’t see it and we can hide the pain well, plus the pain can move and change with the snap of a finger.
  • Ask about it, if you can get some understanding of how it affects the person you are talking to you can help better and understand more.
  • Ask if we are ok, you will get a yeah fine. Follow it up and you will find out how we actually are.
  • Understand, we will cancel plans, bail out and be non-committal. We will get tired, angry and annoyed quickly, it is rarely cause of you.

Lastly I wish this on nobody it can be horrible, isolating and very depressing, my community has allowed me to feel less isolated and allowed me to see that there are people worse than me and better than me, some have showed such kindness and support. Some days are good and more are bad. There are lots of “cures” out in the world and lots of people trying to make money off your pain, but if something works for you then do it!

[Image description: screen shot of Dan @chronic_pain_guy's Instagram account
with the Instagram logo, search box, profile picture which is a cartoon of Dan
with blonde hair, glasses and a beard. His bio which states he has
Fibromyalgia and tries to deal with pain through humour and three of his
latest posts which are all humorous memes]

Wednesday, 25 September 2019

One Second Every Day - September: Week 3 // 2019



Monday 16th September

Had my carer this afternoon and it was much needed. I had a lovely shower and hair wash and went all out with a hair mask, body scrub, face mask etc. It made me feel so much better not just physically but mentally too.
I then had a quick break to eat my lunch before my physio arrived. Unfortunately during my physio session I had a seizure but my physio felt with is great and after she helped me to the sofa. She offered to stay with me but I said I was okay and I just wanted to sleep and I had my CareLink if I needed help.
That's one of the good things about home physio as if I'd been at the hospital I would have been taken round to A&E and pointlessly spent hours in there.


Tuesday 17th September

Had my assessment with my social worker today and it went really well so fingers crossed I will be getting some hours for care and going to some social groups. I don't want to get my hopes up but my advocate was sure I'd get it so it's just a case of waiting now. If I do get care I can start looking at getting my own little flat or bungalow ☺️
After the meeting my mum showed me how to use the embossing/die cutting machine she's given to me which is quite exciting for my letter writing.
Unfortunately I had a seizure (looking back after the meeting I should have gone and had a sleep, plus with the time of the meeting it messed up my routine with regards to medication and eating).
As my mum has never dealt with a seizure before she didn't know what to do, plus I'd banged my head, so she pressed my CareLink who sent an ambulance. Because the paramedics had to give me diazepam I had to go to A&E. Mum met me there and stayed with me. 
I'm home now but feeling sore as my head hurts and my left hip joint it twisted but the Dr said that because of my hypermobility it should sort itself out.
I can't fault the paramedics. They gave me the meds I needed which meant I wasn't waiting for hours in A&E for them and as when we got to A&E because they where so busy 2 female paramedics (who where different to the crew that came to me) got me onto a clean sheet and into a clean continence pad and cleaned me up and put me into a hospital gown.
I'm not tucked up in bed, I've had some jelly and ice-cream and I'm hoping my pain relief settles soon so I can get some sleep.

Wednesday 18th September

I'm glad my appointment was cancelled today. Still in a bit of pain so today I've just taken it easy. 
I spent some time making die cut shapes with my new machine and browsing on Amazon.

Thursday 19th September

Struggled to get up this morning but managed it and just chilled in my pj's before getting dressed. Just as I was about to do my makeup my carer came. Because over the summer I'd changed my visits and this week I'd gone back to my normal visits I've been thrown with the change in routine this week and at points I've found it hard to settle back in.
Thankfully I wasn't mid makeup so I just put on some moisturiser and ensured I had everything in my handbag and put my shoes on whist my carer put my wheelchair in the car.
I have rarely left the house in months except for medical appointments so I thought today I'd go for a drive out to Louth. Eventually we found somewhere to park and we went and had a coffee. One of the good things about having my wheelchair is that we don't have to find parking right outside the shops, unfortunately Louth's pavement's are a bit haphazard when you're in a wheelchair. After we'd finished our drinks we went to WHSmiths as we don't have one locally and I bought a few bits. It was then time to head home.
I was tired but I had just enough time to eat a snack bar and then I went and had my appointment with my autism support worker. Today we put together a 'hospital passport' - this is a little document that I can give to hospital staff to communicate my needs, such as how I communicate, what my care needs are such a low stimuli environment and what I do when I'm in pain and best to support me.
Home and to a much needed nap. It was just Dad and I so we watched a TV programme together and then I had an early night but I struggled to get off to sleep for a while due to pain.

Friday 20th September

I look forward to Friday's as I don't normally have appointments as I need to wait in for the pharmacy so its the start to having a few days off.
I spent a while looking on Amazon and I've bought some die cutting and embossing supplies of my own.
I'm a bit behind with letters as I just haven't had the energy to reply so I sent messages to all my pen pals I need to write to and they where all really understanding.

Saturday 21st September

Today I had a nice lay in and I swapped between watching TV and letter writing as well as napping. Still in a bit of pain today and hoping I sleep better tonight.

Sunday 22nd September

Wasn't feeling great this morning. Woke up just feel 'blergh'. Still decided to go to my mum's and Fred (her husband's) house.
Even though I still wasn't feeling great and and my POTS was playing up and I had a fall (I passed out) I had a really nice afternoon.
We had dinner (main meal) and then mum and I sat (well I had to lay due to feeling dizzy) and we had a browse for craft stuff.
Mum and I then retreated to the craft room (heaven in a room!), well, half craft room and have music production room for Fred. Mum showed me how to make two types of cards. We spent ages crafting and it helped take my mind off things.
As I'd stayed so late we had tea together (evening meal). I was getting tired so we  finished off what we was working on and then we headed home.

Video Description

  • Monday: Pouring coke into a glass and it frothing and fizzing up
  • Tuesday: My pillow vibrator and beeping alarm clock going off
  • Wednesday: Time lapse video of me dropping a dissolvable tablet into a cup
  • Thursday: Sticking down a return address sticker on a holographic envelope
  • Friday: Adding a sprinkle of herb mix into Flop's bowl
  • Saturday: Zipping open a clear plastic pouch
  • Sunday: My hands applying glue to a piece of paper

Saturday, 21 September 2019

World Gratitude Day

Today is World Gratitude Day.

Gratitude is something that has grown more within me since becoming ill. The small things have become the big things. A cup of coffee, a shower, sitting outside in the sunshine or a visit/message or letter from a friend. These things matter more to me now and I am more thankful for and actually often enjoy more than the big things at times.

I think we need more gratitude in our lives and to take a step back and evaluate our lives and what we feel gratitude for and what matters the most to us and makes us the happiest and to help out other people and share kindness and happiness.


Image result for world gratitude day

Monday, 16 September 2019

One Second Every Day - September: Week 2 // 2019


Monday 9th September

Had a mail writing session today. I've gotten a bit behind so I'm trying to catch up. Also worked on my blog putting some post together and creating some graphic and shout out for guest posts so I'm not leaving it too late.
I've also made a start on taking things off my notice board. It looks so bare but it will be nice to see it fill up again.


Tuesday 10th September

Had a seizure this morning and though my brother tried to help he did the worst thing possible and held me down so I'm in extra pain.
That took me out for the rest of that day.


Wednesday 11th September

Forgot to set my alarm but my medication alarm woke me up so I woke up with plenty of time to get ready for my appointment.
My appointment went well. It was my counselling session today and my counsellor has been doing some emotions work with me as I find it hard to name my thoughts and feelings and she gave me some homework sheets which I like having at hand to do when I'm struggling.
After my appointment I got some lunch. I've found today difficult and having my brother at home has been extra challenging today. I've just wanted a day where I can curl up on the sofa like I normally do, especially when I'm struggling, with a nice quiet house to myself but I couldn't and I just felt cooped up in my bedroom and I couldn't sit in the sunroom, even though I love that room, because I needed to be laid down because of my orthostatic intolerance (basically my body functions better when horizontal).
I'm now in bed and I just want to sleep. I'm crying because I'm tired and I'm pain and it's been a hard day and I don't like changes to my routine (my brother being here messes everything up, though at least he's been quieter today).

Thursday 12th September

Managed to wake-up sort of on schedule today and I got ready on time for my dietician appointment. I wasn't quite sure why I was seeing the dietician but for the first time ever they've found me a completely milk free supplement drink so not more having to be maxed out on benadryl all the time. Hopefully they'll taste okay and I can freeze them as when I'm ill I can't even sip on the drinks but I've discovered having then as ice lollies I can tolerate them.


Friday 13th September

Today me and my brother went ta a family member house for tea. They did really well at catering for me and I had a nice time. We had tea and then we played a game. I felt really spaced out and couldn't focus my eyes and my brain had turned to candy floss. Later at 10pm I realised that I'd taken my night time medication with my 6pm medication - big oops! (And it's not the first time I've done that). So when I got home I settled straight into bed.

Saturday 14th September

Woke up feeling rubbish, probably because of my medication error yesterday so I had different levels of medication in my body and my body was out of sync. So today had been a curl up on the sofa kind of day.
I've been wanting this eyeshadow palette (my makeup collection is slowly growing; I must have swapped buying craft stuff for makeup!). It's the brand Revolution which my stepsister introduced to me and she told me about how they do this mystery bag offers where you get £26 worth of products. So I got my eyeshadow palette and I also needed some primer and body scrub. I'm excited for my order to come as I'm interested to see what mystery products I'll get.

Sunday 15th September

Still feeling rough from yesterday's poorly day. Looking forward to Bluebird coming tomorrow and having a nice shower and hair wash.
My migraine is really bad today with pain the base of my neck, the head pain, auras and anti-sickness medication having little effect. Thankfully it's eased off now. I've kept onto of taking pain relief and my Sumatriptan and I had a nap too.
I'm now in my pj's and ready for bed.

Video description

  • Monday: A card with the date in purple and my hand writing 'Dear Gina'
  • Tuesday: A digital clock with turquouse surround and three buttons. The time goes from 9.59am to 10am with an alarm going off at 10am
  • Wednesday: Opening the draw of my Birchbox which has a floral decoration ad the draw is blue revealing the contents
  • Thursday: Opening a letter with a letter opener. The envelope has some pretty floral tape and stickers on.
  • Friday: Turning on a tap which has a pretty waterfall design.
  • Saturday: Putting drops of essential oil which is in a blue bottle into my white aromatherapy diffuser
  • Sunday: Shaking up a bottle of tincture which is in a brown glass bottle