Mind My Rights

The live diary of an opinionated woman, disabled by chronic illness.

⚡︎ This ‘live diary’ is updated from the top, so you can log on and start reading updates more easily (in reverse chronological order).

⚡︎ Questions & topic requests are welcome and can be submitted via the form in the footer of this page, or on our contact page (above): with the reference Mind My Rights.

⚡︎ For now, topics may be searched for by using the ‘Edit’ > ‘Find in This Page’ function in your web browser.

 

30th May 2019

NEGATIVE SELF-TALK & SELF-LOVE?

I’ve been self-loving by… allowing myself to feel shit.

When you love someone, and they feel awful – you don’t tell them to get on with it, that there’s nothing wrong, or to be quiet. Do you?
It’s invalidating.

So: I’ve been reflecting and nurturing – trying to validate myself.

I get so used to hiding my challenges (mental and physical), from doctors, family, friends, and, sometimes, my partner. I don’t want people write me off, criticise, worry, stress, or try to ‘fix my feelings’.

I’ve lost my job, physical abilities, and my perceived control. Something would be up if I wasn’t affected by this.

It has got to be okay that I’m down, and angry. I need space and understanding to come to terms with it. I need to speak to people who understand me, and won’t try to put the blame on me.

I said to my partner this week: “I want to do the website, and social media accounts; But I’m so tired and what ‘self-love thing’ do I have to say”?!

I’ve put on 3 stone and I’ve been hating on myself?
I’m speaking down to myself, and asking myself if I could do more?

So yeah. I’m here saying THAT.

Turns out; Underneath all my self-understanding – are the things to be understanding of! Shock.

I’m exhausted.
I’m still terrified of growing, and am dealing with that.
I am so sick of people telling me it’s all my head, after years of hard work and white knuckle effort with mental illness, and addiction.
I am disabled. And have internalised ableism.
I am chronically ill. And hurt by efforts to discredit, censor, and gaslight me.

There’s NOTHING I can do about the direction my life has gone in. Aside from being understanding of what I need right now.

These struggles don’t mean I’m weak, or that I’ve not tried hard enough.

They mean, I’m working so hard, and what I do achieve is the BEST.

8th May 2019

I while ago now, I was nominated for The Chronicllicles’ Disabilty Blogger Award, by Liz at Despite Pain.

The news brought a smile to my fatiguey face, and now I have found the energy to pass on the pleasure!

With so much gratitude to my nominator Liz, and to Georgina over at Chronillicles for creating the award and therefore connecting even more of us together.

 

The disability blogger award rules

Disability Blogger Award logo from Chronillicles

⚡︎ Thank your nominator

⚡︎ Recognise Georgina over at Chronillicles as the creator of this award, and link her URL: chronillicles.com

⚡︎ Use the Disability Blogger Award logo somewhere in your post

⚡︎ Copy these rules onto your post too

⚡︎ Answer your nominators questions

⚡︎ Write 5 – 15 of your own questions [they don’t need to be illness related]

⚡︎ Nominate 5 – 15 other disability, chronic illness or mental health bloggers

⚡︎ Comment on each of your nominees’ latest posts and/or tag them on social media to tell them they have been nominated ♥︎

 

Questions from Liz @ Despite Pain

If you didn’t have a health condition, but you still wanted to blog, what would be your niche?

If I didn’t have chronic illness/disability, but still wanted to blog, it would be about mental health and recovery. I have been in recovery nearly 10 years, and have been affected by mental health conditions for a majority of my life. Before the onset of my illness I worked in holistic healthcare and was studying to become an integrative counsellor. The link between mental health and lifestyle is still pivitol to me, and something I hope to support other with, in addition to chronic illness, in the future.

What is your favourite season and why?

Oh this is a tough one. I love them all for separate reasons and it was very close, but I will have to say Spring. It holds the promise of Summer, provides light and warmth, but still has cosy and rainy days. Everything needed for life.

If you could time travel, which time would you travel to?

I had to think long and hard about this in relation to my illness/disability. The life I live now throws my decision, and I would have to zip into the future in hope for more progressive healthcare! Sexism and predujice is still rife in the healthcare system, and I do hope that we will look back on helathcare, recovery services, and criminal justice in years to come and do something different! We have a lot of work to do.

Healthy salad or chocolate brownie?

Chocolate brownies can be healthy. Depends on my mood really – both!

What’s the last book you read?

I recently listened to Notes on a Nervous Planet, and it made me feel quite anxious – so I listened to The Curious Incident Of The Dog At Night Time too. I always have lots of books lined up to listen to. I love some of the stuff that’s coming out at the moment. Things are changing.

If you ruled your country, what would be your first new law?

I have no idea! Maybe a law about there being no bad people. It’s this belief that I beleive stops us from supporting people and progressing as a society.

What is your biggest pet peeve and why?

Judgement. In other people, and in ourselves. There’s so much damage that has been done by profiling, predujice, and beleiving we have to be a particular way.

What’s the favourite blog post you’ve written?

My favourite blog post is probably our Guide to Emotional Overwhelm, or The Most Radical Form Of Love. When I get writing about something I am passionate about, it can take time – but getting feedback means the most.

 

My Nominations

♥︎ Stronger Than POTS

♥︎ February Stars

♥︎ Ali Hemsley

♥︎ Spoonie Sophia

♥︎ Natasha Lipman

♥︎ Spoonie Village

♥︎ This Thing They Call Recovery

♥︎ Holly Tree Kitchen

♥︎ Artful Agony

♥︎ Living with ME

 

My 10 Questions

⚡︎  Two things you need in your life right now?

⚡︎  Three books, TED talks, podcasts, or films that have changed your life?

⚡︎  One thing you are worried about or afraid of, that you really wanna do?

⚡︎  Seven words to yourself, 15 years ago?

⚡︎  Five things you are grateful for?

⚡︎  Three dealbreakers or red flags?

⚡︎  Two positive changes would you ask for, if you could wake up tomorrow with your life changed?

⚡︎  Four things you would like to give up, or get rid of?

⚡︎  One of the best feelings you have ever had?

⚡︎  Two links you’d like to share with us?

Note to nominees: There’s no rush in answering or participating. I appreciate you is all. Much love.

28th April 2019

Woah it’s been a shit show.

Going to try and do a bit of a catch up, becuase I’m feeling really rough and am currently in a lot of pain and feel completely drained by fatigue.

I got my letter from the DWP kindly stating I’ve scored me some points for not being able to walk without severe and long lasting pain. So I won’t have to attend the job centre again.

That might not sound like very good news. But that is the good news.

I’ve also had some new and scary ass symptoms – which I’ve led me down the yellow brick road to the gaslighting and condescending consultants. Not nice to see you again.

Last week I developed numbness and weakness in one side of my face which brought on a facial droop (which I particularly panicky about). I tried to ignore it until I could get to the doctor to have it checked out.

He was unsure about it’s origin: I’m still to have some blood tests, and had an MRI scan at our local Rapid Assessment / TIA Unit.

After a day at the hospital, we were informed it hadn’t been a stroke.

The consultant delivering the news prolonged the process painfully. Firstly, by not mentioning the results and doing what seemed like a lengthly gearing up to bad news. And secondly by stating he had very little knowledge of Ehlers Danlos Syndrome or Postural Orthostatic Tachycardia – and then giving an ill informed and irritating lecture on how I should be managing my chronic fatigue syndrome.

I snapped back when he said my doctors needed to be looking at a ‘chemical imbalance’, and suggested CBT as treatment.

I also got a prolonged stare towards my ancient self-harm scars that I can’t help feel like ‘informed’ his wisdom.

We said thank you anyway, and like a scolded child I went back to the car to explode into tears and anger at the way of been spoken down to.

For someone who had no knowledge of EDS and POTS – he certainly had a lot of shit to say.

It hurts me to know that I’m not alone: whilst also being comforted by other individuals who have had to suffer similar treatment.

I spent yesterday in bed. Completely wiped by the day before, and crying about yet another symptom doctors will consider it reasonable for me to live with.

And just before going to bed, I slipped another rib. Which has happened twice now, in a couple of months. It’s really very uncomfortable and I don’t know what is causing it particularly – or what to do afterwards.

It’s left me wondering if it’s the shoulder dislocation that’s caused my facial symptoms, and my rib now being displaced. Who knows, I am – unfortunately – not a doctor.

So, today I’m laid up on the sofa again. Surrounded by pillows, ice packs, and heat pads.

Because it’s day one of shark week too. Yay.

Lightheadness, vertigo, severe pain, and sickness ✌️

19th April 2019

Thank goddess for human kindness.

The woman who we saw at the Job Centre was understanding, kind and complimentary.

Reason reigned and I was sent home, and back to bed, within a few minutes. With well wishes for our manditory reconsideration/appeal.

I’m now laying low so my partner get in the garden, and I can decompress.

Much love to the empathic people out there.

It’s not easy, but it makes the lives of others easier.

18th April 2019

Yesterday I collapsed. Weak and unable to hold my body weight, after a day of heart palpitations and tachycardia.

This morning I vomited. Lost my vision and hearing. And because I got up early (for me) – I’m not able to stand for longer than a few seconds. I had help dressing laying down in bed. The tachycardia and breathlessness beating at my whole body. I lost consciousness. And got in the car. To sit in front of a stranger at the job centre. To do work related activities.

With the the threat of the benefits, that just about cover my food, being stopped.

The physical torture won’t end now I’m home. I will housebound for days, resting and paying the price for pushing myself during a flare.

The mental torture won’t end until a person, who remains faceless to me, decides I am too ill and don’t need to be punished anymore.

16th April 2019

I feel as though I’m achieving nothing. The flare I’m in means that it’s exhausting and painful to wash and eat.

But I’m still beating myself up for not doing anything whilst laid up in bed, in pain.

I have the website, and a course that I haven’t worked on for months (which does unfortunately has a time limit of completion).

I’m just sorry that I can’t give in the way I used to.

Big plans run over in my head. My hopes and aspirations aren’t limited by my conditions in the same way my body is.

I have to remind myself that pushing myself, that forcing myself to sit up, to achieve something small – isn’t always worth the physical debt I will push myself into.

I feel as though I’m in a cage in my body. I so desperately want to get out. I cannot reconcile it in my brain.

12th April 2019

I am completely heartbroken.

I mourn for my life whilst I am still here.

Everything plays out in front of me, like a movie.

Nothing is what I’ve known. Although it looks just the same.

I hate the people who walk past me in the car park.

I am jealous of the people I love the most.

I have lost my right to chose.

may be hopeful. Tomorrow.

Today self-pity is my self-love.

7th April 2019

This weekend my partner is painting the bathroom. And when people ask, he’ll say we painted the bathroom over the weekend.

It breaks my heart not to be able to participate in our life together.

I love painting and laying alone under the duvet doen’t feel good, at all.

To try and help out, I have kept out of the way, ordered some accessories for the bathroom once it’s done, and sent some documents to the printer. Documents of support, appealing the Department of Work and Pensions (DWP) decision to put me in the ‘work related support group’ of ESA.

I have been on ESA (and PIP) for two years, since the onset of my chronic illness – and in that time my condition has remained the same – only become more painful.

The decision that informs me that I can attend one-to-one sessions, to practice work related skills, leaves me questioning why it is that the DWP think they are going to be more successful in treating my disability than several doctors, and years of personal struggle.

ONE MINUTE I'M A LEPER WITH A TRADE, NEXT MINUTE MY LIVELIHOOD'S GONE.

If only all I needed was a well written CV hey? It’s so insulting and stressful, especially on top of everything else w ehave to deal with. I find myself cursing a faceless person, who has no knowledge of me or my reality. For burning my available energy this weekend, and putting me under enough stress that I’m having allergic reactions to many foods I was tolerating before and am able to stand for even less time, since receiving the letter informing me of their shitty decison.

There must be a way to assess individuals health that doesn’t include physical and emotional abuse.

Hopefully, with all the support we have received from invaluable local support services and my GP, we won’t have to endure anymore.

And I’ll get some time with my partner later, when all there is left to do to relax.

5th April 2019

Last night I was woken up from some nasty nightmares, to severe pain in my stomach, underneath my ribcage, shooting into my right arm and shoulder.

It was 4am and I was wriggling around in pain, concerned I was going to wake my partner.

Eventually my tears woke him and he jumped into action – fetching pain killers, creams and gels, hot water bottles and heat patches, and cups of ginger tea.

It’s so difficult to see my health affecting my partner. And to know what to do about it.

I understand that I am in severe pain, and the symptoms I experience regularly are ‘enough’ to warrant a trip to A&E: but I end up explaining to my partner regularly that I have to tolerate it because, quite simply, the condition is chronic and the doctors can’t do a lot to help me – unless I desperately need some much stronger pain relief.

I don’t think that people understand the anxiety that comes with having to decide yourself where the line is between the severe pain of everyday, and something potentially dangerous.

I have been to A&E recently for abdominal pain, and it’s pain killers, and a refferal from the GP. Which we now have going on.

Today I’ve continued to have an upset stomach and unending nausea, bloating, and gas – and of course I’ve only had 4 hours of nightmare filled sleep, so my pain and tachycardia is still flaring away.

Oh and my partner has had broken sleep and has supported me to eat today – I’m too of how full day at work.

Anyone else worry about the responsibility of what the fuck to do?

Honestly, we just don’t have the energy to sit in A&E everytime something terrifying happens.

3rd April 2019

I have been ‘unwell’ for two years, and am I starting to accept that I probably won’t see a recovery, in the way I had imagined.

It’s just too difficult to accept that one week you could climb mountains, work a more than full-time physical job, drive, have a bath and wash your hair – and the next week you are unable to take care of yourself, or do these things for yourself.

It’s so difficult to beleive, that I have told myself it’s not true – for all of this time.

But it’s been two years, and I am still unable live a life which even resembles my life before chronic illness. So I’m having to come to terms with things.

I am 30 this year, and I have the diagnoses of Postural Orthostatic Tachycardis (POTS), Ehlers Danlos Syndrome (EDS), Myalgic Encephalomyelitis (ME), Fibromyalgia, Mast Cell Activation Syndrome (MCAS), Migraine, and depression (which kind of comes as an unwanted extra gift if we’re honest)!

I will add more information on these conditions as we go along – as well as how they affect me.

This won’t be a story of pure misery. But it will be the truth.

I would like for people like me to feel less alone. For us to talk about the issues that plague us, openly. With no shame.

Please do pop on and say hi to me. I know there are millions of us out here. I’m looking forward to kicking open the doors on the hidden world of chronic illness, and getting real about how things really are for us.

CONTACT ME

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