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.