Poetry isn’t my typical style. Even in my job as an author I write children’s books and YA fantasy fiction. However putting pen to paper and writing whatever comes out is how I deal best with my emotions.
I wrote this last night while in the bath. I’ve been struggling with nerve issues recently along with another round of optic neuritis that has drastically impacted my sight. This is the unedited raw poem that came from the turmoil. It may not be the best but it’s the best representation I have of me right now. I know others will understand.
I’ve not had to resort to Lorazapam this week for managing my jaw spasms/dislocations (yet). So far my usual meds and my Dr ordered bandage support, are doing the job along with Damon relocating it when needed. I hadn’t realised just how much the Lorazapam had been affecting me until it started to work its way out my system.
Now this isn’t a surprise. Clonzepam and Diazepam are listed as allergies for me as they cause psychotic reactions when I take them. It seem to be a family of meds I don’t get along with but unfortunately need at some point now and then unless we find a better alternative to turn to. This time it was like someone had extinguished all hope. Even though my Dystonia is well controlled these days, the fact that my Ehlers-Danlos is getting worse seemed unmanageable. Crushing. Uncontrollable.
Now that it’s out of my system I can see how much of an affect it was having. Yes my EDS is on a downwards spiral at the moment, but we’re adapting and I am blessed with a supportive Fiancé and family who are helping me. My life is very much one full of hope and love. It’s helpful that I have my blog to turn to read to myself on bad days.
Botox is on Friday which I’m much looking forward to. I cannot wait to take these bandages off.
It’s hard to know to where to start. I’m so tired from the painsomnia and I know that is partially responsible for my level of frustration, emotional upheaval and general anger towards this current situation. Focusing on one hour at a time seems to help.
Being very much limited in my capacity to move much is hitting me hard. Having finally found a medication that helped my Dystonia, then developing this prolapse and adapting to its limits feels like a slap in the face. I cannot empty my bladder fully due to it, which is resulting in bouts of incontinence with no warning, I haven’t been able to go the loo properly since Thursday last week and that’s causing its own pain. I move around with my thighs clamped together terrified of making it worse. There are 36weeks to go before the first consultant appointment.
Acknowledging that this hit my mental health is important. I was already in a bad patch due to ongoing hair loss causing anxiety. This new complication on top knocked me down, hard. I know I’m a fighter and will adjust with time. However it’s important to recognise that what I’m feeling is valid.
Before I sign off I want to touch on one thing; look beyond the filter. In the first photo above the filters has smoothed out most signs of exhaustion, my eyes almost look sparkling and awake. It’s a nice image with little hint of what’s going on. This is an image I would post on my personal profile or my author page; it doesn’t reflect my current issues. The second photo is filter free, the bags under my eye are clear to see and the dark rings obvious. The puffiness in my face from my meds hasn’t been smoothed out. This I would post on my Dystonia and Me page. It is a truthful image.
I never posted either photo (until now). It got me thinking about the need to act ok when I’m not. It’s quite a damaging reality. We see it everyday. Just some food for thought. Personally I’m going to stop using filters, see the reaction to truthful imperfections and struggles. Live my truth. (unless me and my daughter are using it to be bunny’s)
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.
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.
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.
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.
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.
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.
Dystonia and Me 