Trip out to The Range

So ever since my birthday on the 17th June Dad has been promising me that he'd take me the The Range for coffee and to browse all their craft stuff and finally yesterday (19th July) we went.

I had a few things on my 'to buy' list like water brushes (I actually found watch I was looking for in a cheaper version) for watercolour painting (I got some watercolour pallets from Dad for my birthday) and some sponges for painting and adding texture. I also needed a new messy mat as I'm not sure where mine has got too. I also needed more envelopes, address stickers, glue and clear tape.

Going round I spotted a new collection of craft bits called 'Moroccan Haze' and I haven't done any folded out letter in a while as I ran out of 12"x12" paper so I put some of that in my basket along with some matching supples like stickers, washi tape and ribbon.

Apart from the matching washi tape I refrained from buying any more washi tape as I have loads at the moment. I also bought some stickers but again I restricted myself as I have quite a lot at the moment that I want to use up first. I also found some pearlescent spray paint which I thought would be nice to add a bit of shimmer to my paintings.

I enjoy going to The Range as there's always new things that they're putting on the shelves.
After I shopped myself out Dad and I went to the cafe and got  two coffee's which we drank and I went through my basket and took out what on second thought I didn't need.

I was tired when I got home but pleased with my purchases and I chilled out making a letter for one of my pen pals.

July Birchbox review

So to try and jazz up my blog I thought I show you what's in my monthly Birchbox.

Birchbox is a monthly subscription box where you receive 5 beauty products, from cosmetics to shower stuff to perfume samples. 

I absolutely love my Birchbox and the start of each month when I know my box is on it's way to me. I have a beauty profile with things like my skins and hair type and how adventurous I want to be with my make up so my box is customised to me.

So this month I received a Browcote waterproof brow gel (which is a bit like mascara for your eyebrows), a 'Merci Handy cherie cherry' hand cream which I haven't used yet as I'm still using my Birchbox Cath Kidston hand cream from April, a 'What's in it for me?' shower scrub which smells amazing and I can;t wait to try out, a 'Balance Me' congested skin serum which is great and goes really well with the other Balance Me facial products that I've received in previous Birchbox's and a 'Manna Kadar' multi-use powder which can be used on the cheeks and eyes - this one i got to choose the shade so I went for the shade Blush; I haven't used this one yet as I'm trying to use up what make-up I already have on the go.

Most months you get a chose on one of the products, like todays I received an email asking me what shade of eyeshadow I wanted in next month's box. You also guaranteed to receive at least one full-size product, but often the sample sizes are pretty decent. 

I've been getting my monthly Birchbox for quite a while now and you can cancel anytime and Ive built up a box of products so when I feel in the mood for a pamper I got out my box of Birchbox products. I've also come across products and brands which I love and have go on to buy them in the Birchbox shop.

I'm still perfecting this type of post which I'll aim to do each month so if you want a better review or more information about what I go just leave a comment.

EDS Diagnostic Centre, Sheffield - 18th July 2018

On Monday the Genetic Counsellor called me and we spent almost an hour talking and me being asked questions ready for my appointment on Wednesday. 

Then yesterday I had my appointment with the EDS Diagnostic Centre in Sheffield. I went there as I was referred my my rheumatologist to be tested for a form of Ehlers-Danlos Syndrome known as Vascular Ehlers-Danlos Syndrome (vEDS). Fact: there are 13 subtypes of EDS.

The journey went well and we arrived in plenty of time and thankfully with Sheffield only being a couple of hours away I didn't need to be up mega early like I do for my appointments in London.

Whilst I was in the waiting room a lady came out to me to ask me some questions like my height and weight and consent for pictures to be taken if needed and also to share my information for research and teaching - I'm all for research and education so I was very happy to consent.

At 2pm I went into my appointment with the Dr and Genetic Counsellor and the Dr asked me some further questions in addition to the questions the Genetic Counsellor asked me over the phone. 

The Dr then did a physical exam looking at my joints and also my veins to look at my how hypermobile I was and also to look for features of vEDS such as bruising, prominent veins and particular facial features.
EDS is a genetic disorder and vEDS can be diagnosed through a genetic test so a sample of blood was taken and when the results are in the Genetic Counsellor will contact me. Hopefully the results will come back clear as vEDS is quite a serious condition to have.

The journey home was also pretty straight forward apart form having a spasm attack down the motor way which was a bit painful as they usually are but being laid on the stretcher was much more comfortable than if I was sitting in my wheelchair.

Personal views below:

During my consultation I brought up about the unbalanced way EDS, especially hEDS (Hypermobile Ehlers-Danlos Syndrome) is being diagnosed and how some people are diagnosed by their GP who have very little knowledge of EDS and then there's others like myself who go through appointment after appointment with specialists to be assessed for EDS and the Dr totally agreed with me and said that she believes that GP's shouldn't be diagnosing conditions like hEDS as they simply aren't equipped with the proper knowledge to diagnose such a condition. 

We went on to discuss how this unbalanced way of diagnosing means that there's people who have been diagnosed by say their GP (especially if you go to your GP and say "look I'm hypermobile, and I've looked it up and I think I have hEDS?") as there's a lot more out there now about EDS which is great but it's leading to people I believe being misdiagnosed or maybe even self-diagnosing (as you can be hypermobile but not have hEDS or HSD (Hypermobility Spectrum Disorder) for instance athlete, dancers and gymnasts) who probably, if they saw a specialist like I have wouldn't actually meet the new criteria for hEDS/HSD. In addition to this, being misdiagnosed with an illness, any illness, can lead to the person taking medications they don't need and other treatments like braces and splints which if they don't really need it will lead to muscle weakness and wastage. Plus it takes a huge toll on the NHS.

GP's need more knowledge and shouldn't;t be diagnosing rare illness, instead they should be referring to specialist for assessment rather and doing the easy (and maybe cheaper thing for the NHS) and diagnosing themselves.But also now under the new classification there are people living with the old EDS Type 3 (Hypermobile Type) who now under the new classification wouldn't meet the new criteria for hEDS/hypermobile Ehlers-Danlos Syndrome, which again the Dr agreed with me on that.

And having HSD doesn't mean that you're suffering less than those with hEDS. Personally I've noticed recently that it seems to be the 'in thing' to be diagnosed with hEDS? You don't need the label; we are more than out illnesses. 

Information on: Hypermobile EDS and Hypermobile Spectrum Disorder

Video Telemetry

 So I thought I'd do a blog post about video telemetry's and EEG's after my recent hospital stay. I did plan to write this whilst in hospital but I didn't get round to it and its a bit delayed as my recovery from being hospital has been slow and I've had a lot to deal with.

A video telemetery is a EEG which is also video taped and sometimes there's also a microphone too.

An EEG is a 'electroencephalogram'. Tiny metal discs are glued to the scalp and forehead; around 24 discs are applied. I also have two on my arms to record my heart rate and muscle activity due to my myoclonic seizures in my right arm.

In the video telemetry I was more-or-less constantly hooked up to the machine that and there is a camera above me. I had a little bag which all the wires on my head was pegged into and then from that box (pictured) there was a wired connected to a monitor which displayed the EEG readings. Each time I have any kind of seizure activity I have to press a button (pictured) that is almost like a bookmark on the recording and it also alerts the staff in the nurses bay so they could come an check up on me. I/the staff also had to keep a written record of my seizure activity. For the most part I was glued to my bed and the machine but I could have 15 minutes off the machine to allow me to say use the bathroom.

Each day the clinical neurophysiologist came to renew the tape and make sure the metal discs where all still intact and ask how I was getting on ask what seizure activity I'd had.

The purpose of scalp telemetry is to record on EEG (electroencephalogram) any spontaneous electrical activity of the brain. At the same time it aims to record any physical movements and sounds that may occur during your usual attacks, episodes or seizures. A wall mounted video camera; microphone and the EEG cabling are set up at the telemetry bed. We aim to record three or more of your usual attacks, episodes or seizures. The purpose of recording both the EEG and video is to establish if any electrical changes occur in the brain prior to or during any physical symptoms you may experience. The telemetry test can be helpful in:

• Confirming a diagnosis of epilepsy or other conditions such as sleep and movement disorders.

• Establish the epilepsy focus as part of the epilepsy surgery assessment process.

• Recording exactly what occurs during the attack, episode or seizure.

The purpose of my 5 day admission for the video telemetry was to try and record as much seizure activity as possible both on the EEG and on the video and microphone to work out what is causing my seizures so my Professor can make a plan in terms of treatment and moving forwards with my care.

Once all the data has been collected it will then be reviewed and analysed and a report will be sent to my Professor.

I get the results of my video telemetry next week when I see Professor Edwards. I'm feeling quite anxious about the results and the knock-on effects of those results, such as prognosis. But I keep trying to stay in the moment and just hold out until my appointment on the 3rd July.

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.

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 a 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:

• NHS - How to deal with stress 

• NHS - 10 stress busters 

• Self-help for stress

• How to manage and reduce stress 

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:

• M.E. Association

• Action for M.E.

• Association for Myalgic Encephalomyelitis

• M.E. Support

• The Hummingbird Foundation for M.E.

• NHS Choices - CFS/ME

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. 

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: https://the-slow-lane.com 

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.

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: http://www.bbc.co.uk/news/newsbeat-43824503

Cure M.E. is featured in the film and their website can be found at: https://cureme.lshtm.ac.uk