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.
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.
I 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.
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.