So… This is what it feels like.

So… this is what it feels like.

I’m writing this in the early hours* of Wednesday 18th November 2020. An hour ago, I was one age; now, I’m another.

Age is a difficult concept.

If we were to believe the marketing messages, men grow more distinguished, with their greying hair; women are meant to try to look younger; once we look a certain age, we’re told we’re past “it”, we’re targeted with anti-aging creams, hair dyes, plastic surgery. Unfortunately, some people feel that they need to start anti-aging treatments – Botox, liposuction, surgery – before they’re barely out of their teens.

Women are told we must look youthful to stay relevant. With our ever increasing numbers, we’re told we shouldn’t look “our age”.

I understand that. Despite the strong feminist in me, I want people to be surprised at my age, in a good way.

But then I know, far too well, that age is a privilege denied to too many. The friends I’ve loved and lost, children, teens, adults, would all have loved to live to my age, looking in a mirror with older eyes looking back. I know how close I have come to not being here on more than one occasion. I am grateful to be here, at this age, in my body, my face.

I worry about if people will treat me differently; will my younger friends, on realising I’m closer to their parents age than theirs, stop sharing with me, stop including me, because they wouldn’t include their parents or their parents friends? Then I remind myself that life, that relationships, move on. We’re all changing all of the time. And, realistically, why wouldn’t they still include me.

I look at my face in the mirror. Are there more lines, creeping across? Is my skin tone changing? I can’t see any changes today, though I’m sure I would, had I not looked at my reflection in a year or two.

It’s amazing how much our faces show, and how much they hide. We talk about hiding behind a smile but there’s so much more to it than that. A person looking at me can no longer see the scars I have on my face, or the reasons why they are there; they can’t see how many tears I’ve cried; how many smiles; they can’t see the trauma and grief I have gone through; they can’t see the physical pain I live with, most of the time.

My skin still looks reasonably bouncy; is that due to my skincare? My diet? A lifetime of no smoking and minimal drinking? My skin condition? My genetics?

Then, I think about my grandparents, my parents, at this age and they all seemed older; is it because I was younger? Or that some of them were smokers and drinkers? Was it environmental? Lack of knowledge on skincare and nutrients? Or that they never saw it as a priority?

My hair. Thanks to my Mediterranean heritage, I started going grey at 12. I dyed my hair every month for decades. I hated it; it was messy, time consuming, and I found it dull. Two years ago, I decided I had had enough, and the grey has been growing, proudly; if older lionesses had manes, it would look like my hair. Grey hair was a trend for a while, but it was mostly young women; is it fashionable or age if it happens naturally?

My body. We talk about how our bodies creak more as we get older, that we can’t get on or off a seat without sound effects; I don’t feel my body creaking but I do, on occasion, have sound effects, but how much of that is due to my age, and how much to my disabilities? I think my body does remarkably well, considering everything it lives with, everything it’s gone through.

I still feel young, younger than I did twenty years ago. My life has more vibrancy, enthusiasm and happiness now than it did then. But, no matter how young I feel, my birth certificate, though the name is different, can never lie about the year I was born.

Again, I feel grateful to be here, doing what I do, aiming to make the world a better place, all things I didn’t, couldn’t, do when I was younger. I am grateful for reaching this age, surviving through so many obstacles, thriving as I chose to live. 

But, this number, I struggle with it.

Two sayings come to mind: 

We don’t stop playing because we grow old; we grow old because we stop playing. 

I’m still playing.

And,

Age is just the number of years the world has benefited from having you in it. 

I believe the world has benefited because I’m still here.

So… this is what it feels like. This is what it feels like to be 50.

It’s actually quite fantastic.

*I frequently write at this time; I think my brain likes the quiet.

Representation Matters

Well… in my last blog, I told you I had written a children’s book. 

I also said it was going to be released on Crowdfunder.

Step one: ⇃

Step two: ⇃

Step three: PANIC!!!!!

Okay. It isn’t *quite* that bad but, my goodness, the anxiety before I shared and those first moments before someone donated, the butterflies in my stomach were nauseous from the amount of fluttering!

It’s an odd concept, really. Many years ago, the thought of putting myself “out there” so much would have not been a thought to entertain. Having spent much of my life being ridiculed and criticised, I felt vulnerable enough; there was no way I was going to draw attention to myself and give people more reason to tell me how rubbish I am.

Yet, all these years later, I’m doing exactly that.

I’m sharing a story that others will read. They could judge it. They could criticise it. They could tell me they hate it. No matter how much I have moved on in my life, these thoughts have been waking me up in the night; thankfully, I’m on medication to help me sleep so the thoughts don’t keep me awake for long. But they’re there. 

Not only am I asking people to buy the book, I’m asking them to buy it months before it will be printed. I am asking people to believe that it will be a good story.

It’s scary.

It’s also wonderful!

I have stepped outside of my comfort zone and I am creating something not many people I know have done. I’m creating something that I thought would only ever be a dream. And I am seeing that people believe in me, my CIC, and my ability to write.

I’ve only just worked out how to see the supporters of the project on Crowdfunder, and the comments that are being left (I can be a tad slow with technical stuff 😉 ) Oh my! The comments! They definitely brought joyful tears to my eyes! It’s been wonderful to read comments from friends; messages of support and encouragement. And, beautifully, messages from people that live with disabilities, either in themselves or in their family, saying how important it is to have positive representation. 

That makes me very happy. I knew that is what I wanted to do but I was concerned others might not think it was a good idea. People DO think it’s a good idea! 

Representation really does matter.

So, have I told you? I’ve written a book; it’s available to buy in advance on Crowdfunder; and I have stepped out of my comfort zone (again!) and I am ready to make this happen.

If you would like to support this campaign, the Crowdfunder link is here: https://crowdfunder.co.uk/where-are-we-going-childrens-book

So … I’ve written a book.

I’m trying to sound casual about it but… I’VE WRITTEN A BOOK!!!

My first book (notice the “first”) is a children’s story.

I’ve loved children’s books for as long as I can remember. As a Nanny and from working in schools, I have read A LOT of children’s books. Some awful; some barely memorable; many are brilliant. And, as someone with no children, I have an impressive collection of children’s books.

I *might* have a little knowledge on what makes a good children’s book. Though, perhaps I don’t. But I think I do.

I’ve had the first two sentences of the book in my head for quite some years, in response to a few things: people at bus stops; people’s lack of imagination; and lack of representation of children with disabilities. 

So many times I have been standing at bus stops and, on the child asking, “Where are we going?”, the adult with them would answer snappily, “Shut up! I’ve told you where we are going!” Or, “Shut up!, I’m on the phone!” Or words to that effect. I’ve seen so many children, desperate to talk to their adult about the bus they were on, or to talk about the burning questions that every child has, only to be ignored, or shouted at. It’s sad, but I really don’t blame the adults; we’re encouraged to write stories in primary school, to allow our imaginations to blossom, then, as we get into secondary schools, we’re told to be more rigid, to not daydream, so it’s no wonder that many people feel that using our imagination is silly, or that it might feel scary to create something.

If you have read my previous blogs, or if you know me, you’ll know I live with several disabilities. I also know a lot of people that live with disabilities, and many of those are children. 

Did you know that less than 4% of books have a child with a disability as the main character? And that most of those books are about the disability? So that means that children living with disability rarely see themselves represented and, when they are, it’s just about one thing they live with, not about them as a whole human. And it means that children that don’t live with disabilities don’t see children that might be different to them. So, if they don’t see people that might be different  represented, how can they learn that we have more in common than what separates us? 

I wanted to create a story that wasn’t about a child’s disability. I wanted to create a book that was about a child living with a disability simply living. 

And I wanted to create a book that showed that, in the same time it takes to say, “Shut up! I’ve told you where we are going!”, you can create a wonderful, imaginary adventure, that could take you anywhere, where you could be anything. I wanted to give people encouragement to let their imaginations blossom.

And I’m fairly sure I’ve done that. With huge thanks to the fabulous artist illustrating, Art & Murals by Donna McGhie, who has done an amazing job of translating my brain.

Obviously, I am worried about releasing the book. It’s like releasing a puppy into the wild!

Will people buy it?

Will people like it?

Will the Crowdfunder work?! 

Oh yes! The Crowdfunder campaign! That will be launched next week!!! (October 28th 2020!) There’s a wide range of rewards, from donating just to support, to buying a book just for you, or a book for you and for a school or group of your choice, right up to being able to donate a book to every primary school in your city! There’s also a great package to get items not available anywhere else!

Oh yes! I’m nervous and very excited!

Writing a book was on my “someday” list; something I wanted to do but thought it was unlikely.  Then, “some day” happened.

I’ve written a book!!!

My Experiences of Living with Chronic Conditions. Part Five.

When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible. Including my mental health ones.

A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.

One of my conditions is called Thoracic Outlet Syndrome. It was diagnosed following an MRI, along with my degenerative spinal disease diagnosis. I’m going to go on record and say I HATE MRIs!!! It’s like being squished in an aggressively squeaky toothpaste tube. 

Anyway.

The NHS list of Thoracic Outlet Syndrome symptoms is:

  • pain in your neck and shoulder, which spreads into your arm – this may be constant or come and go
  • temporary loss of feeling, weakness or tingling in the affected arm and fingers
  • temporary inability to carry out fine hand movements – such as doing up buttons

For me, before lockdown, it was mostly in my left arm, with the rare bad day in my right arm; now, due to working lots more on my laptop, having had to adapt my business to being online, it’s now worse in my left arm and not so good in my right arm.

Usually, it feels like I have a sharp pencil stabbing my elbows; my forearms feel as if a heavy weight has been dropped on them; the two outer fingers on each hand, and up to the knuckle on my middle finger, feel like they have cramp; there’s also a constant stiffness in my left shoulder. I’ve gotten used to my hands and arms feeling like it, though it’s not comfortable.

Then there’s the days where I long for the stabbing and heavy feelings.

On those days, my elbows feel like they are being crushed; my forearms and wrists feel like they are being crushed in a vice;  nearly the whole of my hands feel cramped and pained. It feels like I am being hit across my neck and shoulders with a cricket bat.

When it’s bad like this, doing anything feels like I am fighting against setting concrete. Many years ago, I was a bodybuilder, and, at my peak, I could deadlift more than my body weight; on the days when my thoracic outlet syndrome is bad, it feels like my arms are the heaviest weight I have ever lifted. This means that even using the body puff in the shower, seems heavy; lifting a kettle is agony. One of the most embarrassing things, though, is, if I am out for a meal and the cutlery is too heavy, or it has any bumpy edges, not only is my EB exacerbated (see part one of this series), I have to ask whoever is with me to cut my food. It’s things like that, that make me feel my independence is threatened.

As they were diagnosed at the same time, I shall talk about my degenerative spinal disease, too, although, really, medically, there’s not too much to tell: my spine is slowly crumbling. 

Whether it’s because of the spinal disease, or a result of holding myself awkwardly due to all the other conditions, I always have a backache. It’s mostly tolerable, thankfully. Then there’s days like today (and yesterday, and the day before…), where moving is excruciating. If my back is rested against something, like the back of the sofa, moving my limbs doesn’t cause my back extra pain, but, as soon as I move away from that support, it’s a searing pain that makes me feel nauseous (By the way, I have a phobia of vomit; apart from hating not feeling in control, if I vomit, because of my EB, the acid in it tears my mouth and throat apart. Feeling nauseous makes me anxious). And the back pain is why my Thursday blog, usually out reasonably early in the day, won’t be released until 10pm. Better late than never, though.

As I said at the beginning, a lot of what I do is about accessibility and acceptance. I hope this blog gives you a small insight into what it’s like to live with just one of the many, many conditions there are, and how that, for those of us with invisible chronic conditions, you can’t see what’s going on behind our smiles.

Always remember to be kind. Always remember to be accepting. Always remember to be inclusive.

My Experience of Living with Chronic Conditions. Part Four.

When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible. Including my mental health ones.

A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.

The one I am going to talk about today is the hardest to talk about. I was tempted to leave it until the end of the series, maybe gloss over it, but the thought of putting it off was just making me anxious, so I decided I would write it today. Even though I will be worrying about the repercussions all day. And beyond! I could hide this aspect of myself but I can’t expect people to be open and understanding of disabilities if I’m not willing to discuss my own. And, also, authenticity is really important to me.

So, here goes.

I have Emotionally Unstable Personality Disorder/Borderline Personality Disorder/Difficult Life Syndrome* (take your pick on which label you use).

The NHS definition of EUPD/BPD is:

Symptoms of borderline personality include being emotionally unstable, having upsetting thoughts and acting without thinking.

The main treatment for borderline personality disorder is a type of talking therapy called psychotherapy.

The cause of borderline personality disorder is unclear. It’s been linked to traumatic events during childhood, such as neglect or abuse.

Well, that sounds jolly!

I have that. 

It’s a difficult diagnosis to talk about, partly because of the stigma attached to it (the murderers in so many crime dramas are committed by people with BPD; so far, I’ve not murdered anyone); and partly because it’s one of the “catch-all” names given when medical professionals have given up trying to find a potentially more suitable one.

I was diagnosed with it around nine years ago, though I’ve lived with it for far longer.   

The why I have it, I won’t talk about it for this piece, but, for me, I would much prefer the condition to be more widely known as “Difficult Life Syndrome”. It’s semantics but, when words like “unstable”, “borderline”, and “disorder” are used, they feel more dangerous, more volatile, scary, whereas, “Difficult Life Syndrome” does what it says on the tin. I have this condition because I’ve had a difficult life. 

How does it affect me?

I have been told many times that I am “high functioning”; that I can’t possibly have it that bad because people don’t see the same in me as they do in other people. 

The thing is, partly because of the stigma attached to the condition, but mostly because of the life I’ve lived, I have become an expert at masking it, because that was the safest thing for me to do. If ever they give out Oscars for long term acting whilst living, one of them will have my name on it.

But, it affects every day, every hour, of my life.

Part of the condition for me is hypervigilance.

This means that I do these things:

  • Every time I walk past the front and back doors, I have to check to ensure they’re locked so it’s harder for an intruder to break in. That’s the thought I have every single time I pass the doors.
  • Every time there’s a knock on the door, anxiety swells within me, wondering if this is the time the person knocking is here to break in, rape, or murder me. Or all three.
  • Every time I walk past a plug socket, if it’s not being used, I have to switch it off because I have a fear of there being a fire.
  • Every time I get up at night for a wee, I have to turn on the light in each area I pass through, and check behind the shower curtain, to ensure no-one has broken in. I hold my breath the whole time.
  • Every time I see a notification on my social media,or my emails, I worry that I’ve done something wrong, or that someone is going to tell me how rubbish I am.
  • Every time I am in a room with other people, I have to do regular surveys so that I know who is there, who is getting too close, who I don’t feel I can trust.
  • Every time I use public transport, I regularly scan my fellow passengers as a risk assessment.
  • Every time I walk anywhere, I am constantly checking who is around me and monitoring how safe I feel.

And I do mean every single time.

I also have frequent bad dreams. When I say I’m not good in the mornings, people make jokes, implying I’m lazy; I make some excuse about my nighttime medication not wearing off quickly. In truth, I don’t get that hazy, slow wake up feeling; once I’m awake, I’m AWAKE!!! I’m aware of everything around me, sounds, sights, smells. I’m aware of the pain there is in my body immediately. And then I have to begin the transition from a night of vivid dreams to a day where I am constantly alert. I need that quiet time; without it, I am exhausted and I feel vulnerable, because I don’t feel as alert. On occasions, I will do something before 10am, but it takes me a couple of days recovery before I feel like me again.

I know there will be people reading this that know me, and these things will come as a surprise to them because I am high functioning. They will be surprised that happy, confident Vie has moments of anxiety before every single interaction in every single day. It’s why I get “peopled-out”; I love being around people (now) but it is so tiring and I really need, and value, my days when I am alone.

When writing something like this, that is so personal, it’s easy to gloss over a lot of the realities of it, and, also, there are limitations on what to write, as you don’t want people to be asleep before the end of it. So I will round it up now, maybe to re-visit at another time.

But, before I end this piece, I want to explain that, although I have written a piece that covers a few pages of A4, there’s a lot more to say. I want to tell you that living this life is not easy. I want to tell you that I have worked incredibly bloody hard to get to the level of functioning I am at now, and that I have to continually work hard to maintain it. Sometimes, thoughts pop into my head that tell me to stop trying, to go back to being the reclusive human that hid away from so much, but then I remember what I have, what I have achieved, and, though I need to rest at that time, it gives me the courage to keep moving along.

And I remind myself that, because of the life I have had, I am really good at my job because, amongst other things, I see things others don’t see. And, goodness! I have lived through decades of hell and come out smiling! Of course I am going to have the experience to teach people how to find the best in their lives!

As I said at the beginning, a lot of what I do is about accessibility and acceptance. I hope this blog gives you a small insight into what it’s like to live with just one of the many, many conditions there are, and how that, for those of us with invisible chronic conditions, you can’t see what’s going on behind our smiles.

Always remember to be kind. Always remember to be accepting. Always remember to be inclusive.

*I can only talk about my experience of living with this condition; everyone else with the condition will have different experiences because we’ve all had different lives.

My Experience of Living with Chronic Conditions. Part Three.

When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible.

A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.

And I thought I would do them as chronologically as possible. I’ll combine some of them, because that makes sense to me.

Although one of mental health conditions should probably come next chronologically, I have decided I am not ready to share that yet, so I will tell you about others first.

In two previous blogs, I have told you about my EB and my bursitis; you can read those here

I also have endometriosis.

It wasn’t diagnosed until around eight years ago but I believe I have had it since puberty; without giving my age away, that was over 20 years before I got diagnosed. That’s actually not that uncommon.

This is what the NHS website says about endometriosis:

Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.

Endometriosis can affect women of any age.

It’s a long-term condition that can have a significant impact on your life, but there are treatments that can help.

Symptoms of endometriosis

The symptoms of endometriosis can vary. 

The main symptoms of endometriosis are:

  • pain in your lower tummy or back (pelvic pain) – usually worse during your period
  • period pain that stops you doing your normal activities
  • difficulty getting pregnant

You may also have heavy periods. You might use lots of pads or tampons, or you may bleed through your clothes.For some women, endometriosis can have a big impact on their life and may sometimes lead to feelings of depression.

Thanks NHS.

And periods are usually so much fun, otherwise! 

For me, thankfully, as with my EB, I have a “mild” form. This means that I am usually not affected most days, “just” for around ten days a month, with two to three hideous days.

On my bad days, I am exhausted. I don’t mean I’m tired and could do with a nap; I mean EXHAUSTED; I mean that it feels like I am wading through setting concrete; I mean that a fork feels too heavy to lift to my mouth; I mean that the thought of standing and making lunch feels like climbing Kilimanjaro; I mean that having to concentrate so hard to be able to have a conversation with someone that, after, no matter how happy the conversation is, I just want to cry.

So, on saying all this, you would think sleeping would be easy, eh? I wish!! I’m in so much pain that it’s difficult to settle. Then, because I am bleeding so heavily, I have to get up three or four times a night. Which adds to the exhaustion.

And the pain!!! With the conditions I live with, I am in pain every single minute of every single day. But, when it’s “that time”, every single bit of pain intensifies and there’s new pain on top!! 

The bursitis pain I talked about in one of my previous blogs, with the thumping and stabbing sensation, now also has a tearing sensation; it feels like every piece of muscle and tendon in my hips is tearing, desperate to get away from whatever it is attached to.

Other conditions that I haven’t talked about yet are also exacerbated; my degenerative spinal disease, which normally means fairly constant backache, feels like I am being kicked continuously.

My thoracic outlet syndrome, that makes my hands and arms painful to use, are even more painful because of the aforementioned wading through concrete feeling.

And, then, we have the “usual” period pains; for me, it feels like I have a lead rugby ball in my lower abdomen that some burly player kicks every now and then for fun.

I try so hard to get comfortable but each position only remains comfortable for a matter of minutes. Sometimes, you’ll find me balanced precariously on the edge of the sofa, bent double; other times, I will be hanging over the edge of the arm of the sofa; occasionally, it feels better to have my knees tucked up close to my chest; other times I need to stretch and take up as much space as possible. 

And I am one of the women where it has affected my fertility. Or lack thereof. I got pregnant once, when I was 22; I miscarried at 13 weeks and I haven’t been able to get pregnant since. The emotions and the work surrounding coming to terms with that is a whole other blog.

So, even for me, a “mild” case, endometriosis is not “just” a bad period. It’s painful, emotional, and exhausting.

As I said at the beginning, a lot of what I do is about accessibility and acceptance. I hope this blog gives you a small insight into what it’s like to live with just one of the many, many conditions there are, and how that, for those of us with invisible chronic conditions, you can’t see what’s going on behind our smiles.

Always remember to be kind. Always remember to be accepting. Always remember to be inclusive.

Language and what it can mean.

I wanted to talk about the language we use.

So much of what is common vernacular, that many of us think nothing of saying because we believe we have no ill intent, is hurtful and damaging.

This could include sayings that are racist, sexist, homophobic, ageist.

But, what I want to focus on is ableist language.

I am a person with disabilities. I am open about that. My conditions are, mostly, invisible, so, when people see me, they see a woman, usually in a pretty frock, with her hair in flowers, being happy and enthusiastic. Some will make judgements about my size, or about my abundant grey hairs. Others will notice my energy and my smile. But they don’t see my disabilities. Just like they don’t see the disabilities millions of other people are living with.

In the last two days, in interactions I’ve had, by the language people have used, they have demonstrated their feelings towards people living with any health conditions. They probably won’t be aware that their words are indicating their beliefs; they would probably believe that they are very kind and considerate when they meet someone that lives with a disability.

I thought I would share some of the things I’ve heard; some weren’t directed at me, because they didn’t know I have disabilities; others were.

In the introductory session of a networking meeting, we were asked to talk about what we like, what we enjoy; lovely! I thought.

Several people said that they value their health, which is great, as it has great value, then they followed it up with:

Without my health, I have nothing.

I. Have. Nothing.

What this says to me, is that, if we’re not healthy, we can’t have full, rich lives. We can’t have fun or excitement. We can’t have love and adventures.

Because, without health, “I have nothing”.

This devalues my life and the life of every human that cannot be classed as healthy because of the nature of our conditions. 

“I have nothing” tells me that you don’t think my life is worth living because I am not healthy.

I. Have. Nothing.

This means that having a partner that loves and adores me means nothing.

This means all the lives I have had a positive impact on mean nothing.

This means all the fun and adventures I have mean nothing.

Now, when someone says, “Without my health, I am nothing”, I have no doubts that they don’t mean to imply all that, but they do. I have no doubts that they have probably not thought about that sentence much; they probably don’t think about it’s implication. The thing is, so far, they haven’t needed to, so they don’t understand how hurtful it can be.

They probably also haven’t thought how fragile health can be. How, sometimes, in literally one moment, our health can be taken from us, through a random accident or incident; they don’t think how likely it is that many of us will get cancer or dementia, or another life limiting condition.

I want you to think about all you have in your life; all the people you love; all the things you enjoy; all the adventures you have. If your health was taken away from you, do those people mean less? Does living mean less?

I’ve also been told by a few people that, if I did this or that treatment, I would “feel more me”.

In the words of the amazing song, this is me!!

I’m in pain every single second of every single day. There are things I struggle to do. There are things I can’t do. A large part of the time, I’m beyond tired. I have to plan everything, right to planning I have the money, or a willing driver, to ensure I can get home from wherever I am in the country because my energy levels can change rapidly, as can my levels of pain. Without doubt, these things are difficult to live with.

But.

Through my illnesses, I have learned more about who I am. I have learned how strong I am. How determined I am. I have set myself challenges and surpassed them. I have had adventures I never could have dreamed of. I have people in my life I love. I run a business I am passionate about. I’m not healthy by many people’s standards, but my life is full; full of love, kindness, and happiness.

And acceptance.

Acceptance of myself and everyone else.

Yes, I’m a person living with disabilities but that is not all of who I am.

My Experiences of Living with Chronic Conditions. Part Two

When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible.

A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.

And I thought I would do them as chronologically as possible. I’ll combine some of them, because that makes sense to me.

You can read the first in this series here.

I’ve had pain in my hips for around twenty years. 

It was several years before I got diagnosed with bursitis.

The NHS definition of bursitis is: 

Bursitis is when your joints become painful, tender and swollen. It can usually be treated at home and should go away in a few weeks.

Bursitis happens when the fluid-filled sacs (bursa) that cushion your joints become inflamed.

You might have bursitis if 1 of your joints is:

-painful – usually a dull, achy pain

-tender or warm

-swollen or red

-more painful when you move it or press on it

-It can affect any joint, but is most common in the shoulders, hips,  elbows or knees.

Yeah. It “should” go away in a few weeks. As I said, I’ve had pain in my hips for around twenty years. According to the CDC: Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. 

I’m also one of the “lucky” ones, in that I have it in more than just one joint; I have inflamed bursa in both my hips, groin, and buttocks.

For me, most days, the pain feels like I have an angry, demanding toddler, continually thumping me, wanting my attention; on bad days, it feels like someone is shoving some kind of trident fireside poker, scalding hot, into each inflamed bursa. Sometimes, because my body loves a jolly jape, it will be the manageable angry toddler, then, angry toddler suddenly turns demonic, thumping with fists of flames and spikes that unbalance me, then they’ll smile sweetly and go back to the persistent, non-flamey, thumping.

This all adds to the difficulties with walking. And standing. And, sometimes, even sitting. It’s hard to get comfy when it feels like you have giant marbles in your posterior.

Over the years I have been given medication that, unfortunately, didn’t work; to add to my curious cases of conditions, I am “delightfully” drug resistant; most of the time, the drugs don’t work (wasn’t that a song?) or I become that one in a million on the prescription information leaflet; previous incidents include me going from completely fine to as if I had been drinking gin for twelve hours straight, slurring my words and unable to stand straight, in the space of ten minutes, and being able to give a drunken lecture to my partner on fascinating facts about spiders because there was a spider on the wall; this is extra odd as, usually, I am arachnophobic.

I have also had steroid injections in my hips. Again, no joy. And physio. And acupuncture. And massage…

I have been told my only option now is surgery, but the specialist I see has told me that the success rate is low and, right now, I don’t want to put myself through that. There will come a time when I’ll feel that’s the best option, though. Just not now.

I had intended to talk about a couple of my conditions in this blog but that will make it quite long so I will add another one to the series very soon.

As I said at the beginning, a lot of what I do is about accessibility and acceptance. I hope this blog gives you a small insight into what it’s like to live with just one of the many, many conditions there are, and how that, for those of us with invisible chronic conditions, you can’t see what’s going on behind our smiles.

Always remember to be kind. Always remember to be accepting. Always remember to be inclusive.

My Experiences of Living with Chronic Conditions. Part One.

When people see me, unless I am using my walking stick, they don’t see that I have disabilities. That’s because my conditions are, mostly, invisible.

 

A lot of what I do is about acceptance and accessibility so I thought the time had come to tell you about the conditions I live with.

 

And I thought I would do them as chronologically as possible. I’ll combine some of them, because that makes sense to me.

 

The beginning.

 

I, obviously, don’t remember being born, but I remember being told that, when I was born, my bottom was raw. 

 

I was told that I used to get a bad nappy rash frequently. Over the years, cuts and scrapes were always far worse than the accident warranted. Following activity, and whenever I got hot, my feet would blister.

 

Because we’re told not to pop blisters, as that increases the risk of infection, mine would get bigger and bigger, engulfing all of my toes, or my entire heel. The skin on my hands would frequently be sore. When I had fixed braces, my mouth was covered in, what were thought to be, ulcers. The slightest exertion would make me sweat, which I always found incredibly embarrassing, concerned people would judge me for being unfit. That added to the embarrassment of walking around like a constipated chicken because of my blistered feet a large part of the time.  

 

On the rare occasion (more about that another time) I was taken to the doctor about it all, I was misdiagnosed. I got diagnosed with a few different types of eczema (one where I was told to soak my feet in potassium permanganate, resulting in brown stained feet and nails!); I got told the skin on my feet was too soft; I got told the skin was too hard; I got told I was allergic to my own sweat (which added to the embarrassment of sweating so much already; I felt it was all my fault). 

 

During the summer, I would end up wearing cheap men’s flip flops, as my feet got too swollen for women’s shoes, even though gripping the flip flops caused more blisters. When I was alone, and not likely to get told off, I would go barefoot as often as possible, even outside.

Once I left home, I could take myself to the doctor; I saw several, each giving a different diagnosis. Nothing they prescribed helped. Then I got referred to a dermatologist at Chelsea and Westminster Hospital. I sat down, showed him my feet, and he said, “You have Epidermolysis Bullosa Simplex Weber-Cockayne!”. In my usual eloquent fashion, I responded with, “Huh?” He said my feet were such a good example of EB (much easier to say than Epidermolysis Bullosa) that he sent me to the photography lab; my feet are in a medical journal!  

 

I began to learn more about the condition. The NHS explanation of EB, and the symptoms they state, are:

 

Epidermolysis bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters.

The main symptoms of all types of EB include:

  • skin that blisters easily
  • blisters inside the mouth
  • blisters on the hands and soles of the feet
  • scarred skin, sometimes with small white spots called milia
  • thickened skin and nails

 

Even though it is a genetic condition, I am the only one in my family with it; I am a mutant; I am still waiting for Wolverine (well, Hugh Jackman; can you imagine the damage those claws could do to my fragile skin?! 😉 ) to come calling. 

 

I have learned that there are several varieties of EB; mine is one of the “lesser” ones; I say lesser; even in its lesser forms, it still affects every level of our lives. Here are some of the ways it affects me:

 

  • I have to be very careful about what I eat. I can’t eat anything spicy, peppery, acidic, hard or sharp. That means I can’t eat most salad leaves (too peppery); I can’t eat most fruit (too acidic); I shouldn’t eat crisps or hard sweets. The spicy, peppery and acidic foods cause my mouth to blister; the hard and sharp foods tear my mouth. Sometimes, my throat can blister too. Any blistering or tears makes any eating difficult and painful.

 

  • My hands. If I hold a pen or pencil for too long, my skin shears. Opening up bottle tops causes my hands to shear. Wearing rings can create raw patches. If I iron, my hands shear and blister (obviously, a great reason to not bother 😉 ). Holding anything for any period of time, such as knives, potato peelers, most kitchen implements, causes the skin on my palms to become raw.
  • Shoes. I have to think carefully about the shoes I wear; heat and friction are causes of my blisters, so I can’t wear shoes that will make my feet too hot; I can’t wear shoes that have too many straps or edges (it’s so painful taking shoes off when blisters have formed around straps). I can’t wear shoes that put pressure on a particular point of my foot. Well, that should be “I shouldn’t wear”; I do love a good pair of high heels every now and then, but I do suffer for it.
  • My feet. Do you know how uncomfortable it is to get a stone in your shoe? My feet feel like that most of the time. Generally, my feet feel like I have stones under the skin; on bad days, it feels like my skin has been torn open with a rusty razor blade, had lava shoved in, then sewn back up with a blunt needle. This makes walking on any ground hard but it’s especially hard on uneven ground, shingle, pebbles and other rough ground.
  • Itching. My skin itches  All. Of. The. Time. Sometimes, I can ignore it, maybe just having a good scratch now and then; when it’s bad, I would happily tear my skin off and rub it vigorously on a cheese grater. 
  • My body. Although it’s mostly my mouth, hands and feet that are affected by my EB, I can blister anywhere; anywhere where there is any heat and/or friction.

 

A reminder: I only have a “mild” version of EB. 

 

As I said at the beginning, a lot of what I do is about accessibility and acceptance. I hope this blog gives you a small insight into what it’s like to live with just one of the many, many conditions there are, and how that, for those of us with invisible chronic conditions, you can’t see what’s going on behind our smiles.

 

Always remember to be kind. Always remember to be accepting. Always remember to be inclusive.

Vie

xx

101 Ways (Minus 93) To Help Someone Who Is Grieving

Grief is something we will all encounter in our lives; after all, we all know people, and we all know that people die, so it’s obvious we will all deal with grief at some point. Hopefully, those times will be rare, but that may not necessarily be the case for all of us.

A lot of people in my life have died. I have a rare skin condition that, although it won’t be the cause of my death, in its more severe forms, it’s complications can be fatal. Through this skin condition I am incredibly fortunate to know lots of other people with the condition; part of loving so many people with it means that we lose a lot of people too. It’s always heartbreaking and, no matter how many times it happens, it never, ever, gets easier.

Before this past 11 months, the most people in my life that have died in a year has been three. That’s a lot. This past almost a year has been worse; I have lost five friends. Not just people I know, but people I have sat up late talking to; people I hug when I see them; people I have shared bits of me that many people don’t see. Two of those people have been two of my closest friends. Those two friends would be the friends I would be talking to now (both of them were talented writers and they would be so pleased I am writing again, even it ends up being just this piece). But, I can’t. At least, I can’t get a response from them when I do talk to them.

So, I know quite a bit about grief. I have supported people through it and I have lived, am living, with it. And I thought that, as well as being helpful for me to write it, it may be helpful to some of you to read it.

Grief, without exception, is hard, and, as with all feelings, it’s important that everyone’s motions are heard and validated. There is no wrong way to grieve. We can all only do what it takes to get us through each day and hope that, each day, it becomes easier to smile.

As it’s been an all too regular occurrence, I have realised that most people do not know how to be around a grieving person. That could be because it’s hard to be reminded of our own, or those we love’s, mortality, or reminded of those we have already lost. It could be that, although we will all encounter death, that we have never learned how to respond effectively. It could be for many reasons. However, I thought it might be helpful, as a person grieving, to give you some guidelines. You can read them and decide they are the wisest points ever, or that they are a pile of nonsense; you are entitled to have your opinion, just as I am to have mine, and these are what I would request of people attempting to support me.

  1. The sympathetic head tilt.

( https://www.youtube.com/watch?v=Jw1FKlkBwBA )

Equally, saying, “Awwww”.

This is not helpful. The intention behind it is understandable; it’s done with kindness; however, all it demonstrates is that you don’t know what to say. It’s okay to not know what to say. Say that! Say, “I don’t know what to say but can I give you a hug?” Say, “I don’t know what to say but I will happily listen to you tell me about your friend.” We will never get to create new memories with the people we love that have died so it’s really important to be able to talk about the ones we have, so they remain part of our lives.

  1. Show, don’t tell.

During this intense, and previous, grieving periods, I have had lots of people tell me they love me. It’s wonderful to feel that people love you and it’s very kind of people to say it. However, love is more than a word; it’s an action. Don’t tell me you love me then not ask how I am, or offer to support me. Or, if you have so much going on in your life that you can’t offer that, say that. Say, “I love you [person that is grieving], but, right now, I have no energy left to offer anyone, but, when I see you, I will give you a big hug.” Maybe offer to go to the cinema together; that will show you want to spend time together and you’ll have the film to talk about. Grief is very lonely; showing someone you care by being there physically, even if you can’t quite do emotionally, (as long as you have expressed that you don’t have the emotional ability currently) will mean a lot. Be honest. Grief is a big thing for someone to carry, whether it’s you feeling the grief or being the person to help carry it; if you don’t have the strength to carry it, say so; if you just avoid the person grieving, they will believe you don’t care and that will be another grief for them to carry.

  1. Listen.

Listen even when they are not saying anything. If you text or phone and they don’t respond, don’t be annoyed; maybe they can’t people right now. Text them (sometimes voicemails can feel intrusive) and say that you were just messaging to see how they are and that you will message again another day. We need to know you care and that you aren’t angry that we can’t communicate verbally right now. If you have messaged every day for a while (whatever that while means to you) and you have seen no signs of life, message and say that you are worried about them, that you know that they aren’t up to talking, but please could they just tell you they are still alive so you don’t feel the need to go and knock down their front door.

Listen to what they are not saying. We know that people sometimes aren’t good at talking about feelings so, in true stiff upper lip fashion, we may go, “I’m fine” when asked how we are. Most people who say they are fine are far from it. If someone says this to you, ask them another question that may get more of a response. Say, “You might not want to talk about it, and that’s okay, but I am here to listen if you would like to tell me that you really aren’t fine.”

Listen to what they are saying. If you have tried to get them to talk and they don’t want to, and they have told you time and again they don’t want to, believe them. But don’t stop contacting them. Send texts, cards, gifts. Let them know that, although they may not want to talk, you still care. If they do talk, listen with the intent of hearing, not responding; don’t interrupt. If you can’t comprehend the pain they are in, or what they are saying, again, be honest, say that; tell them that what they are saying is beyond your understanding right now but, goodness!, it all sounds incredibly hard and that you may not have words of wisdom but you can offer a hand to hold. It’s okay to not understand every emotion someone else has but it’s important that, if someone is sharing it with you, you listen with kindness.

  1. Don’t say, “Call me if you need anything”.

It’s understandable why people say this. We feel we are helping. But, it’s also a way of putting more responsibility on the person grieving. That person is already struggling; they may not know what they want or need; they may not know how to ask for it; they may think you don’t mean it, that it’s just a platitude; and they already have too much to think about.

Instead, offer suggestions. Ask if they need anything when you do a supermarket shop. Ask if they would like to meet for a coffee and a chat; tell them you would like to know more about the person they are grieving because they were obviously wonderful for people to be grieving them, but that you are also equally happy to sit in silence reading books over a hot chocolate and a slice of cake. Keep inviting them to things; they may say no but it will be important for them to feel included. Offer specific things, not just general comments. Take responsibility to be their friend and help them. Ensure they know you expect nothing of them. If they say they need teabags when you are shopping, ask if they would prefer it for you to leave them on the doorstep, so they know you aren’t expecting a conversation but that you are happy to chat if they would like to.

  1. Remember that the funeral doesn’t always give closure.

Funerals, although tear-inducing affairs, can also be quite wonderful. They are a chance to say a public goodbye and spend a few hours talking to people who also loved the person you are grieving for, without feeling that you are boring them.

However, the next morning, and many mornings after that, when they wake up, the grief is still there. Respect that. Continue to treat the person tenderly until they have demonstrated to you that, although their grief will always be a part of them, they are now back to their variation of normal. You will know whether they are faking it because you will have shown by now how great a friend you are because you will have been following the previous points.

  1. Think about the language you use around the person grieving.

In our current vernacular, we use words that, in their true meaning, have such depth and power, but they have been utilised to mean something less. Think about those words. Think about what you are going to say before you say it. Don’t say that you feel so poorly you feel like you are dying, when you know you are not; just say you feel really rough. Don’t say you are dying for a cup of tea; just say you are desperate for a cuppa instead. Often, those words will slide over the listeners, because they are so much part of our language now, but, to someone already feeling surrounded by death, those words can be jarring.

  1. Don’t make assumptions.

Just because your grieving friend is out wearing neon, clubbing until dawn, don’t assume they are “okay now”; maybe they are; but, maybe, they are out dancing to trance to block out the noises in their head, throwing back vodka because it numbs the pain. Ask them how they are. Refer to point 3 and listen to their answer, the one coming from their mouth and their actions.

Just because your friend is “carrying on as normal”, don’t assume that anything feels normal to them. Understand that they may have a job to do and they still need to get paid. Understand that they may need to be occupied with something else.

Don’t assume that, because your friend is grieving, they don’t want to be included. Maybe, what they really need is to be surrounded by friends as you all go and scream at a boy band or at a rally. Still invite them to things, even if they keep saying no.  Ensure they know that you still care and that you still want their company, even if they are currently only capable of crying and monosyllabic utterances.

Don’t assume that, because they are smiling and laughing, there isn’t still pain. Life is full of so many emotions and, hopefully, we are all capable of feeling more that one of them in a day.

Don’t assume you know what they are feeling.

  1. Treat others as you want to be treated.

This is an adage that many of us claim to live by yet, in many circumstances, we will expect things of some people that we would not expect from ourselves, and we do things that, in similar circumstances, we wouldn’t want done to us.

When you have a grieving person in your life, think about how you would like to be treated. Think about what you would like your friends to do, what you would like help with, what you would need. Then be that person to the person that needs you right now.

If there are any other words of wisdom you would like to add, please do, but, remember, if you have nothing nice to say, say nothing at all.