Thursday 31 May 2018

Breanna’s Cards

Today I received a lovely e-card from Breanna for which I am filled with gratitude for receiving. She runs a project sending out e-cards to people with chronic illnesses to brighten up their day.

The Instagram for Breanna's card project is @breannascards a direct link can be found here.

I just wanted to give a shout out to Breanna for what she does to help others. Alongside the project Breanna is also a S1 Paralympic swimmer for Team USA.

Friday 25 May 2018

GUEST POST by Elise for EDS/HSD Awareness Month

"Room for two?" An older man asked me as I passed him. It took me a moment to register what he said, just coming out of the zone I'd been in, before replying the not-so-snappy come-back, "afraid it only takes one". He had seen me in my powerchair, as people do, and made a friendly comment. 

I was flattered to be asked by Naomi to write for her blog. The lack of predictability with illness means my piece here is late, but for Ehlers-Danlos Awareness Month I thought it might be a nice change of pace to write about my feelings on other's perception of me. Posts this time of year tend to range from, "inspirational zebra" to "look at me bend", to "let me give you a biology lesson, collagen style". It's all very productive but it never addresses the more personal aspects of living with Ehlers-Danlos Syndrome (EDS). So let me put in on a platter for you, simply as a person who's dealing with being built differently. Collagen-style.

Recently I've started getting out on my own, & I've noticed different attitudes around me - in fact, more positive when I'm lonesome. When I'm with my mother, my carer, I'm not treated as though I'm mentally capable of answering questions about myself - when it's obvious that I am. As she gets hit with questions in regards to my prognosis, my diagnosis, if the wheelchair is permanent - it's the failed effort to not be confronted with the subject herself that seems most offensive. It's often when I've wheeled myself off out of ear range that these questions come. It's hard to know how to react when your body is achknowledged above your present state of being. At moments like this, it is not our duty to raise awareness or give away personal information - it's our right to maintain dignity and privacy, that comes into play.

When I'm on my own - when I look closer to a "normal", or capable, teenager - it's a different story. It's always a struggle, but I have yet to face those questions in that scenario - additionally, people are more direct and more receptive to the prescence of someone who may need a hand. I get people making comments a lot - like the man I mentioned before, predictably usually about them hitching a ride or a driver's joke (“got a license?"). But I lose my voice when I'm seen to be cared for by another, and I'm treated like a tradgedy and a burden no matter what. The real tradgedy isn't the wheelchair, but it's the assumption that because of my illness I'm not living my best life. With nothing to blame for it but chance and luck, this is the hand I've been given. I am living my best life because this was the direction it took me, and like most I'm working with what I have while figuring out what I want. But what frustrates me more than anything I can't change, is the things that should change - and I believe awareness is the first step forward (or wheel - whatever your form of travel) to rectify that. 

If I had control of the country for a day, I would smatter the nation with ramps, lifts and dropped curbs. Going deeper into the issue, I would make access a priority in architecture and businesses. Work environments would receive funding for disabled employees and schools would bring disability into education. I would delete every piece of obvious "inspiration porn" (see below)* and replace it tenfold with representation in mainstream media. I would make it mandatory for any new houses built to have options for future adaptions - in the likelihood that the inhabitants became disabled themselves. Of course I would put every effort in to save the NHS - which is this country's biggest redeeming quality, something to protect. And hopefully, pave the way for young disabled people like myself to be given more options for their future, and not have to fit into a society that shows unending reluctance to accommodate for them.

Alas, disabled people rarely make it into powerful positions, which is what crossed my mind as I passed the university near my house today, and saw the crowds of students not far from my own age, making the most too. Ehlers-Danlos Syndrome has forced me to confront the deep and difficult parts of society, the overall perception we have on living with a disability, the realities of health care. Physically, it's given me unimaginable amounts of pain and trauma, and that's something that has changed my perception of myself; I may be no inspiration but that doesn't mean I'm not proud of the discovery that I can endure & I can persist with what is deemed to be the most unimaginable of life changing occurances. Something which TV told me was worse than death, and politics taught me was the least productive and therefor the most burdensome existence to have. In the face of loss and grief I aim to acheive happiness, fulfilment & ambition. That's not inspirational; that's life! And I can't help but wonder how it would be if we stopped hurting ourselves over other's definition of success.

I am seeing the good in people now I've been exposed to both sides - the frustratingly intrusive and dehumanizing side, which comes from a place of ignorance and fear, and a stranger's need to comment silly things about my chair, which at first felt like an act of self congratulation, but now also feels like a gesture of solidarity. Ehlers Danlos Syndrome is a complex, multisystemic condition, it requires x and y for treatment and continuous medical input... but most importantly it's a life changing experience. It's an ongoing process, living with the internal and external experiences associated with EDS. Way into the future, I have hope both battles will have significantly more positive associations and prognoses. 

*For those of you who don't know, this is a term used to describe the way able bodied people turn disabled people's accomplishments into their own motivation/"inspiration porn". It's a harmful gesture, most commonly used in media, because it both makes disability such a terrifying thing that merely living with it is a tradgedy, while simultaneously pressuring disabled people to do more than physically & mentally necessary in order to be considered a success. All the while no one does much to challenge stigma or helps those with a disability. My best example and most used by infuriated activists: "The only disability in life is a bad attitude" - a quote by Scott Hamilton.

Friday 18 May 2018

Paramedic Call-out

So yesterday at my group therapy I went into a prolonged status seizure episode. During my tonic-clonic seizures I am totally unconscious; unaware of what is going on around me and unable to communicate in any way.

After about an hour of me having on/out for tonic-clonic seizures with full body myoclonic seizure activity in-between (this is how my status seizures present) the staff decided to call for an ambulance. Whilst we was waiting for the ambulance to arrive I started to come round a little though I was still very confused and in a heck of a lot of pain and was a bit sick. As soon as the ambulance crew arrived I started from the outset that I would not be going to A&E due to how poorly I am "cared" for there. 

My blood sugars was a little high for me - double what they normally are and my blood pressure was a bit low and my temperature was up and trying to decide what to do. In the end the paramedics agreed to let me have some Entonox to ease the pain on my dislocated shoulder and subluxed hip. Entonox isn't a magic cure, it helps the pain but it wares off the minute you stop taking it, but for me it can also ease my spasming as although my tonic-clonic seizures was waring off I was still in full body myoclonic seizures but conscious and it did help for a little while but there was no real care plan other than A&E or leave me and present at A&E later if things continue (which would be unlikely as severe as things could have gotten).

Entonox was all the crew could really do and they wasn't a paramedic crew either so they was limited on what they could do other than take me to A&E which I was adamant was not going to happen. I took some of my own oramorph which I carry on me for occasions like this and stayed on the Entonox until it kicked in and the crew filled in the necessary paperwork. Ideally I know I should have gone to A&E but I'm not putting myself through the hell that I usually receive when I'm there. So the crew left and I managed to get home and went strait to bed and curled up and watched some Chicago Med as a distraction and I kept topped up with pain relief. 

It's really upsetting how I know A&E will treat me because my main illnesses are 'functional' and at times clinicians don't even believe me to be ill at or or that I'm feigning and refuse to treat me because I have a 'functional' condition.

More education and awareness is needed to understand FND and to see how serious the illness is; that in reality FND can be as severe as MS and Parkinson's*. For me my FND symptoms including my seizures are relentless and very restrictive and at times severe.

FND symptoms are poorly understood and can be debilitating. -Dr. Jon Stone

Today I've still been in quite a bit of pain but I couldn't have a lay in because I had to be up for my new wheelchair delivery (I've got a more lightweight one now that should be easier to push more independently)

* FND Hope 

Today I am grateful for:
  • The care of the staff at the TC
  • The paramedics looking after me and listening to me

Wednesday 16 May 2018

Mental Health Awareness Week 2018 - Stress

This week is Mental Health Awareness Week and the focus this year is on stress.
"Research has shown that two thirds of us experience a mental health problem in our lifetimes, and stress is a key factor in this. By tackling stress, we can go a long way to tackle mental health problems such as anxiety and depression, and, in some instances, self-harm and suicide" - Mental Health Foundation
Almost everyone experiences stress at some point in their lives - in education, at work, at home, with their health or in relationships as a few examples.

The Mental Health Foundation conducted a survey in 2018 on stress and here are some of their findings:

  • In the past year, 74% of people have felt so stressed they have been overwhelmed or unable to cope.
  • 46% reported that they ate too much or ate unhealthily due to stress. 29% reported that they started drinking or increased their drinking, and 16% reported that they started smoking or increased their smoking.
  • 51% of adults who felt stressed reported feeling depressed, and 61% reported feeling anxious.
  • Of the people who said they had felt stress at some point in their lives, 16% had self harmed and 32% said they had had suicidal thoughts and feelings.
  • 37% of adults who reported feeling stressed reported feeling lonely as a result.
  • 36% of all adults who reported stress in the previous year cited either their own or a friend/relative's long-term health condition as a factor. 
  • 49% of 18-24 year olds who have experienced high levels of stress, felt that comparing themselves to others was a source of stress.
  • 36% of women who felt high levels of stress related this to their comfort with their appearance and body image, compared to 23% of men.
  • Housing worries are a key source of stress for younger people (32% of 18-24 year olds cited it as a source of stress in the past year). 
  • Younger people have higher stress related to the pressure to succeed. 60% of 18-24 year olds and 41% of 25-34 year olds cited this, compared to 17% of 45-54s and 6% of over 55s).
For more statistics visit: Mental Health Foundation - Stress Statistics Survey

As someone with both physical and mental health difficulties stress in my life is just something I come to expect and have to live with on a near daily basis. Some days I deal with stress better than other days. Being ill is a big stresser - having to make what feels like a million and one phone calls and emails to gets things sorted; waiting for appointments and test rests and just simply dealing with the illness and symptoms itself, especially pain and lack of sleep are two big stresses for me.

I believe that its normal and in some ways, at times, healthy to be stressed as it gives us that push to get things done and it is what makes up human. But equally when we're feeling stressed its important to deal with it and nip it in the bud before it becomes more serious.

Dealing with what is making you stressed is important, and reaching out to others for help an support is key, whether it be a partner, friend, family member or a professional. It's not weak or selfish to ask for help.

For more help on how to manage stress check out these helpful resources:

Sunday 13 May 2018

Me and M.E.

I was formally diagnosed with M.E or Myalgic Encephalopathy which is a neuro-immune condition in July 4th 2017, but I'd been struggling with symptoms for quite a while before.

Having M.E. is like having pertinent flu and your body feels like lead. At times M.E. leaves me housebound or even bed bound when I'm going through a crash (a 'crash' is the term given when you're going through a flare-up in symptoms). When I'm going through a crash there are times when all I am affected by debilitating fatigue and all I can do simply do is sleep in the total darkness with zero noise and noise and light just hurts so much and even the pressure of my body on the bed is painful - simply everything hurts and all I can do is breathe through the pain and keep toped up with pain relief and I use the term pain relief because that all it is, relief from the pain because it doesn't take it away completely.

I live in constant pain despite all the medication I take to manage my symptoms. I live in a haze of brain fog and fatigue. Brain fog is another name for the cognitive dysfunction experienced by people with M.E. it can include symptoms like confusion, forgetfulness, poor short-term memory and difficulty thinking and focussing etc.

Another big symptom is Post Exertion Malaise or PEM for short. PEM is 'payback symptoms' for any physical or cognitive activity and if you don't watch out it can cause a massive crash. PEM can come from going to a Drs appointment or simply washing your hair. Life is a constant balance of pacing yourself to try and reduce PEM as much as possible. Its a constant battle and balance. Sometimes PEM comes on straight away; other times it's delayed and may come on 24-48 hrs after activity.

Each individual case is unique. There are good days and bad day, but in some individuals symptoms are constant. 

In the UK 250,000 people are affected by the condition and 1 in 4 people with M.E. are severely affected.

Alongside the chronic fatigue and pain I experience Chronic Daily Headaches; migraines; cognitive dysfunction; sore throats; fevers; infections; sleep problems; IBS and other digestive issues; pain in my muscles and joints; dizziness; hpersentivity to things like nose, light (I wear tinted lenses to help with my photophobia), touch and small. This is only a small list of my symptoms.

The symptoms intertwine with my other illness so sometimes it's hard to tell what is causing what.

I have good days and bad days and days where I'm a mix of both.
When I leave the house I need someone with me that knows me and my need and often i need my wheelchair as I get too tired easily and it eases the PEM and reduces the amount of pain and tidiness I'll be in afterwards. I also use crutches as my balance isn't great.

I only really leave the house for medical appointments. Every other week I go out with my carers to run errands such as to go to the post office and I'll have a rest when I get back. I do occasionally go on a day out with my family like when we went to Harry Potter Studios, but days like that are few and far between and I'm left with severe PEM and symptoms afterwards.

Despite living with M.E. some professionals still don't believe that the illness exists and believe that it's just a case of feeling tired even tough M.E. is much more complicated that that.

With my other illness alongside the M.E. I've had to give up on so many things. My education; my social life (apart from the times when I can make it to church); even my dreams of a career seem doubtful at times.
Current treatment guidelines for M.E. are poor. The recommendation is CBT and Graded Exercise, however this on;y works in less than 50% of cases and for a percentage of people it makes them worse. Thankfully current treatment guidelines for M.E. are being reviewed.

There is currently no cure for M.E.There is currently no specific test and there is a desperate need for more research into finding better treatments and a cure for M.E.
There is currently no specific test for M.E.; instead it's diagnosed first by trying to rule out other illnesses such as anaemia to see if that's causing the person's tiredness.

Living with M.E. and other illness is hard. I take multiple medications a day to mange my symptoms as best as possible. I pace out my activities and energy levels. I take naps during the day. 

This post has taken me a while to write. As a blogger I plan posts sometimes weeks, even months ahead and I type in small manageable chunks.

Sources and links:

Friday 11 May 2018

Spoonie Survival Kits Photo Challenge - Day 5

Day 5: I want to see... what would you like for you and fellow spoonies?

I would like to see better awareness and understanding of M.E. as the stigma of the condition is pretty poor and sometimes it's difficult to even say to professional that you have M.E. because they simply don't understand - sometimes they don't even believe the illness exists; that its just a set of medically unexplained symptoms; they think that you just need to get up and be more active as resting is just making your fatigue worse and that it's all in your mind and you need to change your mindset.

I would also like to see more research and funding going into M.E. to find better treatments to manage things like symptoms and reduce flares/crashes and hopefully one day a cure for M.E. Progress is being made and it was enlightening to see a recent article in the M.E. Association magazine that talked about how in some cases M.E. is more severe that MS which just helps proves how difficult and life changing M.E. is.

Day-to-day I think we just need to talk more about M.E. to spread awareness and the real life stories of how it affects us individually as M.E. is so unique from person to person. I think also to try and reach out to friends with M.E. as its a very isolating illness, especially to those who are mostly house or bed bound. Just a simple message or a letter in the post can go a long way to ease that isolation.

GUEST POST by Olivia for M.E. Awareness Week

At 15 I got ill and I never got better, in fact I never will be ‘better’, not as I was pre-illness anyway. In the past 7 years and 3 months I’ve racked up quite a lot of diagnosis’s, involving most of my organs and bodily systems, but my main and most debilitating diagnosis is severe M.E. Here is what I thought I’d be doing at 22, and here’s the realities of what I’m able to do.

At age 22 I thought 
I’d have just finished university doing a journalism and English degree. Education has always been so important to me, and I’ve always thrived off it. In the earlier stages of illness I had to give up most things, but I clung to keeping in education, over a social life, or anything else.

What I’m actually able to do age 22
I had to drop out of education at 18 as I became too ill to continue. It’s hard seeing all the people I’ve grown up with and known through school going to university and graduating, and I’ve still not been able to go. I feel like I’m so far behind now!

At age 22 I thought 
I’d be working as a journalist. I’ve always loved writing and reading and I have a thirst for knowledge.

What I’m actually able to do age 22
I haven’t been able to read books or magazines for a few years, as my brain can’t function well enough to read, understand, focus and process. I write occasionally (this post took me doing tiny bits a day for weeks) and sometimes what I’ve written makes no sense, I beat myself up about this. What’s a journalist that can’t write? It sounds like the start to a bad joke.

At age 22 I thought 
I’d live on my own at the other side of the country, in an apartment in a city with a fluffy dog!

What I’m actually able to do age 22
My Mum had to give up work to become my full time carer, when I was 18. I was always incredibly independent but I’m less independent now than I was at age 10. I need help with pretty much every aspect of my life, I can’t even go and make myself a glass of water or wash my face on my own.

At age 22 I thought 
I’d be travelling the world, learning about new places, and taking my camera along for the ride.

Me unwell
What I’m actually able to do age 22
I haven’t been well enough to go abroad since I got ill, and I haven’t been well enough to even go on a break in the UK in over 5 years. The only time I’ve spent even a night away from my house in the past 5 years, is in hospital. I spent 5 consecutive months of last year in hospital, cities away, and I wasn’t even well enough to venture outside of the hospital grounds in all that time.

At age 22 I thought
I’d still be dancing, acting and doing more theatre-work.

What I’m actually able to do age 22
I’m lay flat 90% of the day. I have a reclining wheelchair for when I’m at hospital appointments, which are the only time I manage to leave the house. I can’t push my wheelchair myself, so need my Mum to push me. I can faint up to 4 times a day, my fatigue is horrendous beyond comprehension, and I’m constantly in severe pain

Thursday 10 May 2018

GUEST POST by Anne for M.E. Awareness Week - 'Stigma'

I am developing quite a large chip on my shoulder and it is all your fault. Well society’s fault really but let’s not waste time splitting hairs. If I was reading this out loud I might get a bit ‘shouty’. 
If I didn’t have the ‘M.E. label’ medical professionals would surely be at least starting to think that my health might not be the best after three years of suffering and stalemate? 

M.E. sufferers have such a bad name. 

The symptoms are horrific but the stigma is almost worse. It feels like trying to convince someone that your hair is blonde when they’re telling you it’s actually black. You even start to doubt yourself despite being able to see in the mirror that your hair really is blonde like you’re telling everyone. 

Sometimes I feel ashamed to be an M.E. sufferer. I think a lot of us do, and all because of the stigma. But the ones who should feel ashamed are the doubters; the ones who don’t even try to understand; the ones who don’t believe you or trust that you’re telling the truth. They are the ones who should be ashamed. 

To them I say this:

  • You don’t see me when I am too weak to lift my head up. 
  • You don’t see me when my legs shake and my knees threaten to buckle for no other reason than I have walked downstairs. 
  • You don’t see me when I have to clutch the back of my head to try to stop the ‘itchiness’ underneath my scalp. 
  • You don’t see me when I struggle to chew food because my jaw isn’t strong enough. 
  • You don’t see me battling the after effects of even five minutes out of the house.
  • You don’t see me and the heartbreak me and family face everyday because of this illness. 
  • You don’t see the changes in my family dynamics. 
  • You don’t see my Mum spending hours filling in benefits forms trying to prove just how poorly I really am. 
  • You don’t see her trying to put this ‘plague’ into words. How can you describe such awfulness coherently? 
  • You don’t see my dad having to give me what can only be described as an ‘air hug’ because to give me a real hug is too exhausting and painful for me.
  • You don’t see my brothers struggle to find the words to comfort me when I am stuck in bed and having to cancel yet another outing with my friends. 
  • You don’t see the look on my sister’s face when she walks into the room to see my limp, weak body laying on the sofa barely able to sit up. 
  • You don’t see the frustration and sadness on their faces when they ask me if I want to do something only to hear that I am once again not able to.
  • You don’t hear the wobble in my grandad’s voice when he tells me all he needs to be happy before he dies is for me to be better.
  • You don’t see my heart sink when I hear him say it everytime I see him.
  • You don’t see the upset I face when having to visit my GP surgery. 
  • You don’t see me fighting back the tears when I am told by these medical professionals that it ‘really is time to snap out of it now, if not for [me] then for [my] family’. 
  • You don’t see how bad that makes me feel; to be accused of ‘milking it’ when I would do anything, give anything, to be healthy again. 

If you know my family and you are reading this, I almost hope that you feel a bit ashamed of yourself. When was the last time you asked my family how they were coping in all of this? 

Please do me a favour and ask my parents or my brothers and sister if they’re okay. 
Simple as that! M.E. has not only affected me but them too. Maybe even more so. Come out of the woodwork and look after them like you did when another family friend was seriously ill with leukaemia. Illness is illness whether it’s cancer or MS or chronic pain…or M.E. Who are you to decide whether one is worse than the other? My family have been suffering for three years. Three years of watching their daughter and sister struggle to walk and eat and move and speak and function. And all without being taken seriously by the medical world. Imagine that for a second. Imagine if this was your daughter/sister…

Spare a thought for the sufferers and their families who have endured many more years of illness and stigma than me and my family have. 

Don’t you dare judge us M.E. sufferers. If you don’t or can’t understand then fair enough. It is so complex that even we sufferers struggle to get our heads around it. But don’t you dare judge us or smear our name and our illness with rumours and presumptions. 

If someone asks you “What is M.E?” and you don’t know how to answer, that’s fine! Just don’t make something up. Just be honest and say you don’t know.

“All I know is that my friend is very ill with it” would be a much better response than pulling something out of thin air. 

Anne's blog can be found at: 

Spoonie Survival Kits Photo Challenge - Day 4

Day 4: I love... What is something positive that has come from you experience?

Some of the positives that has comes from my experience of being ill is building a stronger me; finding my faith, inner strength, empathy and gratitude for the small things in life, such as Dad bringing my a cup of coffee, sitting quietly in the sunroom listening to the birds. I also love the resilience that I have built up to deal with whatever my illnesses throw at me, like dealing with chronic unrelenting pain or daily headaches or all the other daily symptoms I have to live with.

Wednesday 9 May 2018

BBC Newsbeat Documentary 'M.E. and Me'

I've just come across a very interesting documentary on BBC Newsbeat​ called 'M.E. and Me' an article along with a fantastic video about M.E. looking at the lives of those living with M.E., the research going into the condition, the fight to be believed. Dr Charles Shepard also speaks in the video and he's a leading specialist in M.E. and speaks about the problems with the NICE guidelines for the treatment  for M.E. - thankfully these treatment guidleines are being reviewed.

It's an insigtful but at times upsetting film, especially Sophie's and Merryn's story. Merryn sadly lost her battle with her illness and her family hope that the inquest into her passing will show the M.E. was the cause of her death to validate to condition and how severe the condition is.

I can relate to a lot of what was said in the film, especially the symptoms so it helped me feel that I'm not alone in my fight with M.E. but the filmed also highlighted also the individuality within the condition.

The documentary and film are available on the BBC website at:

Cure M.E. is featured in the film and their website can be found at:

Spoonie Survival Kits Photo Challenge - Day 3

Day 3: Sharing your story - How and when did you first tell people about your illness

For me there's no particular time or event when I first sorted talking about my illness(es) and I try to talk as much about the non-medical things as I can as the illness takes up so much of my reality underneath the surface that is largely hidden.
Speaking up about my illness was more of a gradual thing that took a lot of courage at first but now I feel able to share my journey with chronic illness through talking and social media and here on my blog.
I suppose I talk about my illnesses to try and raise awareness and understanding; I don't sugarcoat things, I just tell it how it is, even the most difficult things.

Tuesday 8 May 2018

GUEST POST by Beth for M.E. Awareness Week

Hi, I’m Beth, I’m 21 and I live in the South West Of England.  I have CFS/ME which effects my life in a pretty big way.

I was a pretty ‘normal’ child with regards to health. I was pretty healthy but got the odd cold or sickness bug. The only weird thing was that I could eat something sweet like chocolate cake or ice cream and be sick right after, then fine after that. 

Around my 18th birthday I got a chest infection. It lasted about a week but it cleared up. I was having a really hard time at sixth form with what we thought was depression (although something wasn’t quite right mentally. I think a lot of it was the start of my M.E) I ended up dropping out of school in February. I spent a lot of time sleeping for hours now I had free days and also a lot of time watching TV shows and YouTube in bed. 

After the summer I went back to redo my last year in sixth form. For the first few weeks it was amazing. I’ve always loved learning and I made lots of new friends. I started a lunchtime cheerleading club for the lower years. We even went on a geography trip to the seaside and I auditioned for the school play ‘The Sound Of Music’ and played the part of a nun. 

I think it was about the week of the show in about October or November when we realised something was wrong. I’d been coming straight home from school and sleeping for a few weeks. We all just thought the change in my activities of going back to school was wearing me out, but soon we realised it was far more than that. 

At first we thought it was glandular fever so we went to have blood tests (always a trail because I have tricky veins.) But all the bloods came back clear so it couldn’t be that. I was taking days off school because of my fatigue. I even remember going to cheerleading and not being able to understand why I couldn’t do things I should be finding easy. So we went to see the GP. My GP was on leave so we saw another one at my surgery who said “all teenagers are tired, you’re probably just lazy.” When my normal GP was back he told us it could well be CFS/ME and referred me to a specialist who told me the scariest thing of all “there is no cure!” 

I got sicker and sicker so my mum found a private doctor in Bristol which is about an hour away from me, I think I should have listened when he told me to leave school again but I was determined to get my A-levels. I spent the rest of that school year coming into school late and going home in each of my frees. I was lucky to have a mum who didn’t work and a house a few minutes drive from school. I would often come home after 2 lessons sleep in my school uniform and go back to school in my crumpled shirt for my last lesson. I would photocopy my friends work from lessons and have even fell asleep in school a few times. 

Study leave for my exams came and by this point I couldn’t read more than a few sentences. My mum would read my study notes out and record then onto my phone. My brother did many of the same subjects and he helped me out too.  But I would always be revising with sunglasses and earplugs. I did ok in my exams especially considering how unwell I was. I’m sure I’m the only one who brought a pillow into the exam room. 

Since then (about 3 years) I am a little better than I was then but I attribute that to resting more. I still get some horrible symptoms, that I could never lost completely. As you can probably tell I can read a little better, still not a book but social media and things. My symptoms include: fatigue, headaches, stomach and bowel problems, muscle pain, muscle weakness, sensitivity too light, sound, foods and intolerance of alcohol to name just a few. 

I have an electric wheelchair which makes my life easier. I help at the local primary school on Friday morning which i really enjoy. I hope in the future I can become a primary school teacher.

My life certainly has added challenges compared to a ‘healthy’ person but I try and take each day as it comes and education people that ME/CFS is #notjustfatigue 

Spoonie Survival Kits Photo Challenge - Day 2

Day 2: Comfort - What, who or where do you find comfort?
There are a few places that I find comfort. I find comfort in my bedroom; its a place where I can escape to to rest and recharge and pj's are certainly comfort clothes too! I also love being out in nature. I also find comfort in my faith and in audiobooks, especially Harry Potter.

Monday 7 May 2018

Spoonie Survival Kits Photo Challenge - Day 1

Day 1: You - Tell us about yourself
I'm 24 (25 next month!). My hobbies and interests include: arts & crafts from crochet to deco patch I'll give anything a go, I love baking (the last thing I made was chocolate brownies), I also enjoy writing letters to my pen pals and Postcrossing - I have a 2 centre long noticeboard in my room for all my mail! I love Disney, Harry Potter and Moomins! My favourite animals are zebras and butterflies. My favourite colour has to be the colour of my bedroom walls which is officially called 'Unicorn Horn'; it's like a dusky pink colour; I also like the colour grey and if sparkle was a colour that would be one of my favourite colours too. I love wearing my Doc Martens and If I could I'd have a different pair for every day of the month. I'm a qualified CND Shellac™ Nail Artist. At the moment I'm really enjoying doing my make up and I'm trying to get more experimental with my look. I've just completed an online Foundation Diploma in Art and Design and I specialised in textile design and I won an award from the college. I'm now doing some distance learning courses to keep me busy and to keep learning new things. I enjoy volunteering, which is on hold at the moment due to my health but I hope to get back to it when I can. I hope to return to University and my dream job/career aim is to train as a Child Psychotherapist. Some of the things that are on my bucket list include: seeing the Northern Lights, visiting Shetland and Orkney, crocheting a jumper for myself and sew my own clothes and learning to sit-ski.

Sunday 6 May 2018

A Magical Day at Harry Potter Studios - 5th April 2018

On April 5th I went to Harry Potter Studios and WOW, what a magical day!

So a little overdue but I've been rather busy and struggling with PEM in-between the busyness, plus I write my posts on little chunks so this has taken me a while to put together. (Plus a lot of what I typed went missing - grr!)

For Christmas I got an entry ticket for Harry Potter Studios (my favourite gift by far) and it was strange as just the day before I was saying how much I'd love to go so on Christmas Day I was delighted to open and envelope and find an entry ticket!

We booked it for April as my Dad's a teacher so we needed to go during the holidays. I wanted to go in February as I was eager to visit, but Dad was concerned about how the roads could be at that time of year so we decided to book it during the Easter holidays. I did the booking an we got a 4.30pm entry slot so we didn't have to leave the house mega early to get there and it closed at 10pm so we had plenty of time to go round (or so we thought!)

When we arrived when had to go down a long corridor; one one side was quotes from the films and books and on the other side was enlarged excerpts of the Marauders Map.

At the end of the corridor was the main ticketing entrance which had a giant Goblet of Fire cup and a suspended Ford Anglia and pictures of different actors. We got there around 4pm and as it wasn't too busy they said we could enter. The first thing we saw as we was queuing was Harry Potter's cupboard bedroom.

We then entered a room where a video was played showing us how it all began and how a film production company had chosen the first book and as it wasn't so popular at the time put it to the bottom of the pile. But when they read the story
they was so impressive that they knew they had to make it into a film and then it just took off from there and they had no idea that it would grow into what is is today.

Next we entered a film theatre and a video was shown to use about the making of the films and preparing us for the magical experience ahead.

We started the tour by entering through the Great Hall set which had some of the tables set at either end and costumes from the four houses - Ravenclaw, Gryffindor, Hufflepuff and Slytherin. And not forgetting the head table where all the teachers sat including the Headmaster.

After that we entered the main set area. 

I picked up an audio guide which was well worth the money. In that you had little section markers like 'Dumbledore's Office' or 'The Burrow' and it told you all about that set such as fact like how they spent two year collecting items from second hand shops for all the props in The Borrow (The Weasley's home) and then the was extras likes videos, audio clips and image galleries for those section makers.

There was so much to see and I wanted to take in every tiny detail and I wish now that I had a set of binoculars to see the smalls props that was set out in the Gryffindor Common Room, or to read the labels and look at the contents of the potion ingredients jars.

It was really interesting seeing the sets and behind the scenes and what goes into making the films and I took lots of videos and photos.

There was also some interactive things, like Dad had a go at lifting a broomstick to his hand and we all sat at a table which use forced perspective trick to make Dad look bigger then myself and Mandy which is how they film parts for Hagrid who's much bigger than the other characters what with him being half giant.

We didn't go to the green screen area where you could have a photo taken being the wheel of the flying Ford Anglia or on a broomstick, partly because I missed that part as I was so busy looking at all the film sets. 

I spent a good few hours in that part of the tour. Dad and I then took a tour round the Dark Forest and met Buckbeak the hippogriff and Aragog the giant spider and some of his children. 

After that we entered Platform 9 and ¾ and saw the Hogwarts Express train which Dad I went on. I also had a go at pushing my trolly through the barrier at Kings Cross Station.

Dad and I went on the train and each carriage was set up in chronological order of each film.

In that part of the tour that was a participation experience where we all sat in a mock carriage compartment and had to give a go at acting in fornt of a green screen following instructions from an audio director giving instructions such as "you're excited as it's your first year and your on your way to school" or "you're scared; there's a Dementor coming aboard the train." This was quite fun to do and Dad and I really got into it.

Once we'd finished at platform 9 and ¾ it took up through to the cafe where I tried Butter Beer. and Dad got some Butter Beer icecream. (Dad also lost his wallet so a member of off took him down the staff access route which was much quicker but it meant he got to go behind the scenes of some of the displays!)

Next was the outdoor area. I was getting a bit cold and dark by this point but there wasn't loads to see so we don't have to spend too long out there.

In the outside area was the Knight Bus and also the set for No. 4 Privet Drive. Originally they had filmed in a real housing estate and later they built the set for No. 4 Privet Drive and the house next door for filming at the studios. We got to go through No. 4 Privet Drive and see the cupboard under the stairs and the Dursley's living room filled with letters from Hogwarts from the scene in the first film. 

In the outdoor area was also the bridge from Hogwarts Castle and a Ford Anglia and Sirius's motorbike which you could sit on.

The next part was looking at all the Special Effects and Animatronics which was super interesting and really showed all the tiny but huge efforts that went into creating the characters and other elements of the films from the Gringotts elves, to plants in the Hogwarts greenhouses for Herbology lessons to Buckbeak the Hippogriff and even a Hungarian Horntail Dragon!

We then took a trip down Diagon Ally (and spotted a Death Eater down Knockturn Alley). I could have spent ages looking at all the window displays in the different shops. Listening to the books so many times I have more-or-less have memorised Diagon Alley so it was quite spectacular being able to go down it; it was much shorter than I expected but I suppose that's special effects for you?!

Next was on display the sketches and small paper scale models of sets which was really interesting to look at and see the different ideas the artists had and the different takes on JK Rowlings idea of different places that appear in the books.

On the walls where also works of art that the onset artists had created which where lovely to look at.

The final part of the tour was the huge model of Hogwarts Castle which was breathtaking to see. Dotted around where interactive screens and you could see a timescale video of them making the model which was fascinating to watch or you could zoom in on different parts of the model.

Looking on the website I was impressed with the accessibility measures they put in place for customers with disabilities and on the day those expectations were met and the staff where very helpful (like when Dad and I got separated).

The staff where also super knowledgeable on lots of facts about the films and my Dad being me Dad asked one of the staff members what the stupidest thing they been asked/told; their reply was that someone had once insisted that the table in Hagrid's hut wasn't the real thing and they'd where actually in possession of the real thing as they'd bought in in auction and had it shipped to their home!

I also could have spent much longer in the shop; I would have loved to have bought a scarf or a time turner necklace. Instead I bought some postcards for my giant noticeboard in my room and I also bought a book called 'Film Wizardry' which is a brilliant keepsake and it tells you all about the different characters and the making of the films film-by-film and it also has little added extras like a ticket to the Yule Ball, Educational Degree posters, a Marauders Map and a staff passport for the Ministry of Magic.

I grew up with the books and the films and I hope that the magic grows on in future generations. The books and the films, especially the third one have helped me some much in life and in dealing with illness. I like Luna Lovegood for her uniqueness and he unafraidness to be herself. I also like Professor Lupin as he's kind, down-to-earth, the teacher we all hope we had, his sensitivity to others but also a damaged person who hides his own secret ailment and it puts into perspective how we all have our own secrets and insecurities and vulnerabilities and they we're not all invisible super heroes even though he's a sort of hero in the book especially to Harry and a good father figure to Harry. And of course Sirus who when I first read of his demise in the fifth book (sorry, spoiler alert) I actually cried. I also cried when Debby die too a he such a loveable character too. The dementors really helped me to personify my own battle with depression. The books and films give me a place to escape into when the outside world becomes too much and there are so many quotes in the book that help to deal with life and difficulties.