Posted in Archive, covid-19, february 2021

The Positive To Lockdown With Chronic Illness

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Chronic Illness in Lockdown memes

Whilst the multiple national lockdowns have come with there fair share of complications, for example cancelled treatments, the stay at home message has been a blessing in disguise for me. My body has been going through a decline/more frequent dislocations lately, which is less than an ideal. Now prepandemic I would have ignored my bodies pain signals, and ploughed through the day. A bad cycle, and habit that I had formed. Only collapsing in the evening, spoonless, in pain and annoyed at myself. Lockdown has relieved the social pressure to attended multiple groups a week, and be on the go all the time. For my particular lot of chronic illnesses it’s meant I have rested when I have needed to. I’ve had the opportunity to relearn my bodies distress signals.

Now don’t get me wrong, I’m not literally doing the above meme, though it has its appeals. But it has removed the guilt I felt on slow mornings when we watched a Disney film and had a slow start to the day, rather than rushing about. I still finish the day with no spoons. That is just life with chronic illnesses. However I rarely exhaust myself to the point that I have impacted the next day, which prelockdown was a frequent occurance.

Post-lockdown this is something I need to remember; that it is perfectly fine to acknowledge if my body is saying no not today. We can watch films, craft and bake in the house instead and have a lovely day. Just being kind to my body more often will allow more days out and in the long run that’s what works.

Posted in Archive, January 2021

Mental Health: It’s About Surviving Not Thriving

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Mental Health Custom Poster

The current times we are living in are unique. Nothing we have ever lived through before could have prepared us for a pandemic requiring multiple lockdowns and restricted social interactions. Reports on rising rates of depression, anxiety and mental health issues are really not surprising. There is no normal currently. Life has become about surviving not thriving through each moment, and focusing on the little wins as they come. If you wore actual clothes instead of fresh PJS today then in my eyes you are smashing Lockdown Three.

If you are struggling right now and feel like you need a bit of help please do explore the options below. I myself have tried several of them and am more than happy to discuss this if needs be. Simply send me a message via the Dystonia and Me facebook page and I will get back to you as soon as I see it.

NHS resources for Mental Health Help

  1. https://www.nhs.uk/oneyou/every-mind-matters/?WT.tsrc=Search&WT.mc_id=Brand&gclid=CjwKCAiAr6-ABhAfEiwADO4sfRJl_Cdhon5SUEsyIIISYLnZpfvy7_X_HoT1E-XINaDydvctSQR3xRoCA9YQAvD_BwE

This link will take you to the NHS Every Mind Matters page. Take the time to really explore this site as it is full of information. If you are finding it hard to absorb maybe bookmark the page or print off some bits and come back to it. One of the great aspects of this site is that it has a feature called Your Mind Plan Quiz; you answer 5 questions and it creates a plan designed to improve and maintain your Mental Health.

2) https://www.nhs.uk/conditions/stress-anxiety-depression/moodzone-mental-wellbeing-audio-guides/

If audio guides are more your cup of tea then these free NHS audio guides may do the trick, there are multiple ones to choose from depending on what aspect on your mental health you are struggling with.

A-Z Mental Health Charities Link

https://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines/

Whether you need help yourself, or you concerned about a loved one, these charities and support groups will be able to help or point you in the right direction.

Urgent NHS Mental Health Helpline (England Only)

https://www.nhs.uk/service-search/mental-health/find-an-urgent-mental-health-helpline

This 24 hour helpline is available for people of all ages. The link will take you straight to the assessment which will get you started.

Posted in Archive, Novemeber 2020

Brain Fog

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I’ve sat here and typed out three different blog posts on three entirely different topics. None of them really made much sense. I should have expected as much. Damon has already expressed concern this evening for how much I’m repeating myself, a sign that it’s a bad brain fog evening and most likely a bad brain fog day tomorrow.

Brain Fog

The pain behind my left eye has become rather extreme again so I’m hoping the doctors will have space tomorrow for a chat. I’ve finished my course of steroids now for my optics neuritis, but the pressure pain in this eye has just become increasingly worse and is really getting hard to cope with. I’m lucky that although it’s a small doctors surgery the team there are fabulous, so I have my fingers crossed they will have some ideas.

Hopefully I’ll have a less foggy weekend and I’ll be able to get the posts I was trying to write up for you all.

  • side note this was originally published with no title…thank you brain fog
Posted in Archive, February 2020

An Anxious But Honest Return

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This morning I was on the phone to my mum when she brought up the fact I hadn’t blogged in a long time. I am rather good at finding excuses for why; too tired, too busy with the kids, don’t know what to say. But none of those are completely true. So bless her, I rambled for quite a while as to the reasons why.

Firstly Ableism. Honestly I’m mad for allowing myself to be beat down enough to feel I didn’t deserve a voice as an activist for people with Dystonia and other invisible illnesses anymore. Up until the last several months I had been having a relatively stable patch which I had been making the most of, and for that simple reason I felt I wasn’t ‘sick’ enough to do this anymore. Which is frankly ridiculous. I have several conditions all of which are chronic, a couple that will continue to deteriorate as I age. My good spells generally never last longer than a Botox cycle, yet because I don’t fit into a nice stereotypical tick box of what disability should look like I felt like I couldn’t blog. I expect myself to be able to do everything that a healthy person can do, because that it is what people, I feel, expect of me from many not so subtle comments for example lose weight your joints won’t hurt as much.

Secondly, was my depression and anxiety. The anxiety and paranoia I experience partially stem from post natal depression but are largely side effects of my medication. I feared hugely that holding my hands up and saying ‘Hey, I’m trying my best but I’m struggling like crazy, I’m terrified by the deterioration I am currently experiencing in my body and I don’t know to do’ that my doctor’s would somehow read this and decide to withdraw the medication that is so vital to me and pack me off for yet more counciling. That may seem ridiculously paranoid to read but when you’ve lived years of doctors gaslighting you, undermining your very real physical symptoms, skirting around the subject of mental health is now habit (though I am on antidepressants now).

I hope that clears things up. I want to blog here more. It helps to write it down and connect with others in the same situation.


So here’s a very late Happy New Year.

Posted in Archive, October 2017, September

Mental Health & Chronic Illness

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Mental Health awareness day was last week and I wanted to write this blog post then but honestly it was too hard. My mental health right now is not great. I’m by no means awful but it’s not where I’d like it to be. It’s been an accumulation of being chronically ill for numerous years and stressful life events adding on top of that.

A major part of the problem right now is my medication. One of the many side effects that many of my medications can cause is anxiety and depression. Whilst I wouldn’t class myself as depressed, I am aware that my anxiety and amount of pain attacks have increased recently and I’m defiantly on the weepy side. However life events haven’t helped either, Just last week I went to collect my little boys prescription from the chemist and found myself being motioned to sit silently on the floor with him due to a lady with a knife ransacking the place; this understandably has made me anxious about leaving the flat on my own, even though I know that I am being irrational as I know that the chances of being in that situation again are very small.

Yesterday I attended the emergency eye clinic at my local hospital and was informed that I have my fourth bout of optic neuritis is a year and a half. Due to this and some more symptoms they have made the decision to refer me to a specialist neuro and carry out testing again for multiple sclerosis; another spanner in the works.

Between my physical & mental health plus the stress of uni work, I feel like I need to let myself have a good cry, pick myself up and carry on except there isn’t time to cry. Don’t get me wrong I love my life but I’m finding it hard to know what to do to help myself. I force myself to do what scares me like leave the flat but it’s draining working up the courage to do so. I would talk to the doctor about it but I daren’t risk it as I know they will stop my painkillers if they start worrying about depression which I need for my seizures. I have ordered myself a mindful mediation manual and CD and hoping that a holistic attitude will help.