Learning about Chronic Illness and Autoimmune Disease

About a week ago a book caught my eye: The Autoimmune Wellness Handbook by Mickey Trescott and Angie Alt

For those of you that have been following my journey recently you will know that due to multiple chronic illnesses I have taken a year or so out to live slow and heal. During this time there have been lots of battles in my brain to do with acceptance and grieving for a life lost (My post about diagnosis can be read here). So when I stumbled across the Autoimmune Wellness podcast I was already in. I love a good podcast as they save me when I have painsomnia or on the days I’m too ill to read and sick of screens. In podcast one Mickey and Angie spoke about their own journey and reason behind the book  so I ordered myself a used copy on Amazon. Let my investigation into my body and its quirks begin. I have a very lov/ hate dialogue with my body and chronic illness and for once I feel I may have the space to address this.


To be honest I am a little sceptical. The amount of ‘cures’ thrown at people with Autoimmune and invisible illnesses are huge. Everyone has a method or a miracle cure or the handy advice of ‘exercise more’ or ‘eat better’. What appealed to me here is the fact it’s a DIY guide and not a manual. Not ‘here’s what works’ but a try this journey and see what works for you. Anything I can adapt works for me and they have podcasts and Instagra. Sign me up, I’m a social media sucker!


So the book arrived and it has a pretty cover so I like that ✔️

Then a friendly story about the authors, another  ✔️ for me. 

It explains how it works in simple terms ✔️. 

Then my fave bit, a checklist quiz all about where you are on the spectrum of Autoimmune, I loved this ✔️✔️✔️.


Then I made the big bad mistake of skipping through the book to the section on food. I knew I’d panic when I saw the elimination diet but OMG it’s epic. It literally excludes everything I like. Bad me, I shouldnt have done this but I did. The pleasure of food and eating is one of the things I feel I have left, and the thought of a strict regime makes me panic a little inside. Even if it made my illness manageble I’m so stubborn and I love caffiene, cake and cheese!

 

Even though I don’t think I’ll manage this saintly diet I’m going to stick with the book for now. Those who know me well will know I’m a typical Gemini who follows the next shiny thing so this may be a short lived project. But my intent is to work slowly through the process and get to the diet when I’m ready and less resistent. It’s worth a shot no?

I’ve recently realised that I dont have to be the best at everything, I don’t have to do everything perfectly. I can start things and even if I dont do them to the letter I can extract some good from them. For example I did a smartphone detox a while back and I’m far from saintly, still addicted, but I no longer have notifications on, deleted the Facebook app and am able to  put it down. 3 good things came of that so thats success not failure right?
I’m going to attempt to blog my journey with this tis book so welcome to the adventrue be it long or short…

The snap election that made me snap

On Tuesday I was driving to Bristol to see my sister and her family. On the way down came the news over the radio of a snap election. Oh no, more disappointment and strife. I know that’s dramatic but I’ve been so hopeful in recent elections, and the referendum, to then be squashed and let down. Me stuck in my echo chamber of disbelief that bounces around my nearest and dearest. I didn’t even dare to hope that this may bring a different outcome. I feel defeated, dejected and a little out of fight and it’s not even begun.

But as I listened to Theresa May’s speech about her reasons why she has made an election u-turn I found myself screaming at the radio. It wasn’t anything to do with the fact she’s gone back on her word about the election in general. I get it situations, tactics, and people change.

It wasn’t even the section that declared it was Westminster that was fractured, not the country, that made me snap. I mean that part did make my blood boil. After all it’s your job as a politician to be divided in views and options and to argue and debate these. Oh yeah and the country are clearly are all at odds, hence the split vote of Brexit.

The bit that made me completely snap was this:

“Our opponents believe that because the Government’s majority is so small, our resolve will weaken and that they can force us to change course.

“They are wrong.

“They under-estimate our determination to get the job done and I am not prepared to let them endanger the security of millions of working people across the country.”

Sorry, say what?! She is not prepared to endanger the security of working people?! So what, everyone else can be thrown into the sacrificial fire? Children, young people, students, retired, people with disabilities, unemployed and sick, terminally ill you can be endangered, have your security threatened and suffer to save the ‘working’.

To me a prime minister should be saying  I am not prepared to let them endanger the security of millions of people across the country. Because that is the job of the Prime Minister; to be working for her nation. To serve the people and protect them, a nation as a whole, not just the ones you select.

I am fully aware she may have meant protecting people’s jobs when Brexit happens, but life is more than that. It’s people’s health, wellbeing, education, culture, families, freedom of expression, right to live. Brexit is about more than jobs.

I’m about to reveal a big shocker. Sometimes life isn’t black and white! Sometimes things just go wrong and the person that was working suddenly finds themselves in a different place to where they dreamed. I wonder if you have ever experienced that Teresa?

Please take a moment to step into my shoes. I followed the formula: I went to college then to university. I’ve always worked hard and above and beyond. I worked 50 hour weeks as a student and after I graduated. For years I dreamed of setting up my own arts company and worked in all sorts of jobs to make this happen. I’ve always paid tax and N.I. the whole way.

From 17 years old my mental and physical health began to play up. Despite this I carried on and tried to earn a living but always ended up in the renting and credit/ debt game. When I started to not cope and drown in symptoms these loans and debt and renting weighed me down further. I tried to live within my limits and keep on earning. I tried to reach for help to budget and dug myself out of holes. I never asked for help from anyone and being fiercely proud I did it all myself.

Inevitably when my health worsened I sunk. I blame myself for poor choices and being defiant by working in the arts. I blame myself for running a non for profit company to help others. I blame myself for getting ill and wonder if I just pulled my socks up I’d somehow manage to work.

The final rock in my pocket is your prejudice as a Prime Minister Mrs May. Your promise to protect working people leaves me out cold. It’s another albatross of guilt strung around my neck. It’s the nail in the coffin of my self-worth. I hide inside the house a lot, incase I’m showing I’m enjoying my life for not working. The reality is very different. The other day I visited a garden with a friend. I posted pictures of my adventures. What I chose not to post were the 4 hours I had to sleep to regain a little energy. The 3 days of back pain and mobility issue as payment for walking. The looks you get for not being at work when everyone else is. And most of all the boredom and frustration at not being able to have a choice.

Just before the election announcement I was visited by a Conservative Party campaigner. He arrived at the garden gate and stood for five minutes talking loudly on his mobile. I began to stumble trip down the garden to meet him and waited for him to finish his call. Eventually he did and he was pleasant enough. He asked me if I would vote Conservative in May’s local election. I told him bluntly that I never would. His response was ‘what if I said we would reduce your council tax, then would you vote for us?’ To me this was the catalyst to a rant. I politely explained back that I am currently in a system to which I’ve always paid tax and I’m being humiliated and let down. The lack of social housing means I face eviction, court, homelessness, living in a bed a breakfast and still may not get help. I spend hours filling out forms, exposing my entire soul-destroying medical history to strangers. My voice raised and my lip wobbled as I told him I’m doubted and tested and have to fight every corner to gain pretty much nothing. Funnily enough I don’t think we should be paying less council tax, but more to help and care for everyone’s security.

He looked shocked and said he ‘was sorry’ as he was already backing away. I know I may have fooled him as I’m not your typical ‘benefits scrounger’. I live in the countryside and I’m mostly well presented. I’m well-educated, intelligent and speak with a slightly posh accent. Maybe I was in disguise or maybe, just maybe, there isn’t a typical non worker. He couldn’t have got away from me quicker once I revealed my ‘not working’ card. What he should have done if wanting to talk to people face to face was stayed and listened. He could have reported back the faults in the system and cared enough to make a change to all people, not just those of certain income or social standing.

I get that people out there play the benefits system. I get that there needs to be a level of testing. But this does not mean all people who don’t work do this out of choice. I’d literally give my legs or right arm to be able to work (no pun intended). I would love to see my passion and skills put to good use, but I can’t. This has nearly destroyed me inside without the judgement of others from the outside. Save your council tax bribery and your tiny words of judgement.

Maybe I’m splitting hairs, but that one tiny word ‘working’ made me feel sick. Like I wasn’t worth looking after. Than I am a villain for claiming benefits and it makes me a burden; a cheat, a lower class of person. That cleverly placed word amongst all the others wasn’t a mistake. It was deliberately put there to make people fear and hate those not working.

Make sure when you judge someone for not working you know their story first, or even better? Just don’t judge.

Mother’s Day Fallout

Dear Wolf

Its been a while since we had a chat about things. Mental health has taken prevalence over physical but I think both belong to you. You are the wolf that bites and the black dog that lurks. Mental health and physical health are linked.

Partly this is because mental health is physical. Maybe its nervous system damage or a chemical imbalance. Currently my diagnosis dances between ‘born with it’ and ‘bad experiences’. The old nature or nurture argument. It drives me mad that mental health is treated separately, but more on this another time.

What I really want to have is a little chat about that phrase ‘Its not surprising you’re feeling down with all that s going on’. Nope it really isn’t. Being limited and constrained feels unfair and chronic pain is simply torture.

Last Sunday was Mother’s Day, some say another hallmark day, I like just letting my mum know I’m grateful for her being my mum. But when you celebrate a group of people there’s always a whole group of people excluded. In this case women who are not mothers. My sister captured the feeling in her Instagram stories on the day…

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That shouldn’t be a problem, I hear you grumble, and generally it isn’t. It’s just sometimes it makes us feel sad to be left out. Sad to not have a choice in the first place. I don’t want to go into extensive detail. But diseases like Lupus are common in causing miscarriages, make for a high risk pregnancy and the meds we take are too strong. We are told fiercely by our doctors not to get pregnant. You can read a little more about it here.

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That’s the physical side and mentally it affects you too. I have an innate fear that I couldn’t care for a baby or child when I’m so exhausted all the time. I can’t even look after myself, let alone someone else. Also there’s a part of me which says ‘what if I pass it on’.

IMG_5143For me the most significant part of not being in the club are the questions from others. So I guess this post is a little get out clause for me. HAVING CHILDREN IS NOT A SIMPLE OPTION. And before you suggest giving up meds/ just doing it anyway/ not being so pessimistic/ tick tock time is running out/  when you’re better/ please believe me that these are things we’ve tried ver and over or run through in our heads.

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It just isn’t that simple and on top of the usual worries people have about money/ career/ relationships we just don’t have the choice. That is it really, as with all chronic illness it is being robbed of choice or options.

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So I’ll send my card and appreciate mums everywhere. I’ll ignore the targeted adverts about fertility or baby clothes. Pick my self up and keep on being me (with a little ache inside).

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Reality

For all those that may think my 6 months off is a lark heres a link to a little video. Do you know what it is and it isn’t fun, just like working is and isn’t. This is what most days look like unless I’m off finding a small break in the misery like flying a kite or walking my pup.

Plus I’m broke, on the verge of homelessness and generally a bit of a whinge.

I also carry massive amounts of guilt for not working.

https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FChronicIllnessOnThemighty%2Fvideos%2F1374582545896823%2F&show_text=0&width=560

Who am I?

So…

I don’t know where to start this one. But yesterday I was asked who I am. I was floored.

I am Vic.

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But who do I present myself as? For years I’ve been me but maybe not me? Its such a confusing question. Can knowing who I am be the answer? I can’t answer it, partly because its a fluid thing and partly because I just don’t know.

I am Vic. I’m creative, passionate and imaginative.

 

For years I’ve played at being an artist and I did ok at it. I’m creatively inspired by stories true and fictional. I’m passionate about the power of the Arts and working with others. My imagination has taken me on some crazy adventures and projects, all of which I’m proud.

Over the past few years my ability to work effectively has been swallowed up by my physical and mental health. At first I said yes to everything in my excitement to be working in the Arts. I was good at what I did so work came to me and despite the struggle in terms of funding and consistency I was happy. The work grew and my company Wide Eyed Theatre was born. I worked in multiple roles for the company, as a youth worker, sessional lecturing and freelance. All aspects I have loved, and despite being poorly paid, I know along the way I have made a real difference in young people’s lives.

Maintaining this was a struggle and at some point amongst all the anxiety fear, pain and fatigue I stumbled. Something went wrong inside and no matter what I did I just couldn’t keep up or manage everything. Work was so important that the first thing to go was my social life and me time.

I began to reduce my life and cut out the extras that tipped me over the edge. I was stuck in a cycle of working or sick. I gradually got more and more fatigued, I’ve often described it as every day feeling fluey. I’d work then collapse and repeat. I had to take long breaks and nap or I just felt like I’d vomit. Everyday off and every nap carries guilt and I felt lazy and like I’d failed. So I’d go back into it full pelt, desperately not wanting to let people down. It wasn’t working. I began to feel drained creatively too. Partly from not feeding myself imaginatively by slowing down and allowing moments of peace and beauty. And partly because I was giving so much to everyone else and not myself as I was so scared.

So I fought for a diagnosis to understand why I felt the way I do. Why everyday is a struggle and why I let people down. I got used to wearing the label of chronic illness and found it easy to hide behind. In a bad place physically and mentally I also got into a bad place in a relationship and financially.

In 2013 I was diagnosed with Lupus. Since then its bounced around and things have been added and subtracted. I wrote more about the labels here. My current diagnosis stands at

  • ‘Lupus’ like auto immune disease1397203fa8512bc777ae182f1060e702
  • Suspected Behcets Syndrome
  • Joint Hyper-mobility Syndrome
  • Fibromyalgia
  • Chronic Migraine
  • Bipolar
  • Borderline Features
  • Depression and Anxiety

I fought to be recognised as ill and not fobbed off and I feel like a diagnosis means I’m taken seriously and its not in my head. The trouble is that I’ve fought so hard that its consumed me. Lupus and medical took over even back here I was discontent with the Vicki that said ‘Hi I’m Vic I have Lupus’ before anything else.

So when I was asked who I am it jarred and crushed the part of me that has become swallowed by the wolf that is chronic illness. Its my defence mechanism but has made my life so unbearable that I am the wolf.

In 2016 it all imploded and I’ve been left stripped of everything. My mental and physical health is fragile. I’m currently at risk of being made homeless and bankrupt. I’m stepping back from work due to feeling so breakable. I have nothing, yet there is glory in being stripped bare.

Then in this conversation a different suggestion was made. One that may yet have viability. I am still Vic, I have a chronic illness and this is how I manage it. This is how I choose to live with and tame the wolf.

I am Vic. I’m creative, passionate and imaginative. I am fierce and tame wolves.

Stumble trip…

Everyday has been getting slightly better, or so it seems. Everyone says how much better I look and how far I’ve come. But do you know what? I’m right back just where I started.

My heart hurts today, it doesn’t yearn for the same things anymore. It feels released from its cage and free from its bonds. Yet it sits there unfluttering and old, it feels unable to love and feel passion.

My life feels like a complete fuck up and I have nothing to show for all the kindness and fight I put out there. I watch and bask in the golden moments of other people’s lives. Or I cower in the shadows whilst the world moves without me.

I’m out of fight again with every barrier put in my way. I’m feeding something that’s useless anyway. I feel more alone than in my desperate moments. Days on end with these 4 walls.

I’m an irritant, a burden and too much. No contact from others despite trying the hardest I possibly can. I feel a terrible, terrible guilt inside for always asking.

I’ve reached the dark forest again and I can only stumble and trip through it. Tripping on the dark thoughts and grazing my knees.

Inside I’m not ok at all. I’m a mess that pours down my cheeks in rivers. I can’t keep up this better face that hides deep numbness and disappointment.

Coal

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The forest grew with strength and youth,

It stood firm despite the storms that raged,

It waited patiently and slowly spread it’s roots.

 

The canopy saw centuries of skies pass.

It waited faithfully, a new life meant to be,

Meant to live in this moment and thrive.

 

But it was over as quick as it had begun,

The waters came and the earth swelled,

The forest took its last breath of freedom.

 

It’s body buried under the weight of destruction,

Long limbs longed for the air again.

Under the burden of years of more and more soil.

 

The heat rose as it was pushed further inside,

It’s heart turned as black as coal,

My heart turned as black as coal.

 

Your words were the destruction reigned,

Your actions were the weight that killed,

That turned my heart to a forgotten fossil.

 

Some time later the ground was opened,

Someone good saw gold in the black

They began to pick at the edges of the dark.

 

It wouldn’t be easy, mining deep in the earth,

Coughing the poisonous choking dust.

Lungs black they knew there was something more.

 

They lit a fire deep within and saw how brightly it burned.

How it was able to fill their world with warmth,

An energy that glowed and built cities.

 

Inevitably came the smog that threatened to kill,

A self destruction where there was once hope,

Lives lost in deep caverns and pits.

 

They could see my heart for what it was destined to be,

In the wastelands they dared to plant a new forest,

And life began again, and again, and again.

 

 

Photography Lesson #1

You may remember that a while ago I asked for people to donate or exchange creative skills with me. I wrote a post all about the adventures I would like to go on. You can read it here.

On Saturday morning I was lucky enough to be offered a beginners lesson in using my camera with Pete Fry.

We got up early, wrapped up warm and headed off to Seasalter. I love the beach in winter with it’s washed out colours. It was a misty morning across the marshland and perfect for some beginner shots.

Pete patiently explained how to use the exposure, shutter speed and ISO on my camera. I just experimented with what worked and what didn’t. How to make changes to get more interesting shots. I still have a lot to learn!

Its just a start but here are my 6 fave shots from the morning.

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Thanks to Pete for his patience and insights. If you would like to swap or donate me a creative experience please contact me below:

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