Living with disability and chronic pain in Ireland. Ehlers-Danlos syndrome, chiari malformation, hip dysplasia, dysautonomia, hiatal hernia/ GERD etc. Taking part in the campaign to reclaim the word cripple as a positive. Ex cancer patient (Hodgkin lymphoma). Very pro-choice #RepealThe8th. Atheist/ sceptic/ scientific thinker/ anti dangerous woo. Love art, photography, animals and vintage toys. Trekkie in between all that... May contain sarcasm and crappy puns.
Bit late getting this post up, but maybe it will help any fellow glasses wearers out there who need a last minute outfit! As you know, it's crappy being restricted in what we can dress as for Halloween. Sure, there's the general ghost, witch, cat -all of these can incorporate glasses. But sometimes we want to feel a bit original. If you're like me and anti contact lenses, or have issues with wearing contact lenses in general, then coming up with a suitable, grown-up costume can be tricky. Same for those of you who have beards -bro, I gets ya. It's quite a big thing on your face, designed to ruin most fancy dress occasions (terrorist is soo 5 years ago). So like with beards, it's best to incorporate the glasses rather than pretend they don't exist.
So here's a few ideas for my fellow glasses wearers. And yes, I'll spare you the oh so obvious Velma from Scooby-Doo, and I've left out some rather silly ones that I've noticed suggested on other sites... Daria? Really? So wear a green jacket and look moody. Or even Jess from New Girl -outfits like this really only work if you have a big sign saying who you are. Some of my own selected characters may even be obvious, but I tried to go for ones that would be recognisable at least.
If all else fails and you really have zero time and/ or money, work those glasses into a mask itself -cardboard and paint can go a long way to create a super hero or a masquerade disguise.
I have nothing against bloggers monetizing from their writing, quite the opposite, even if it's just not for me right now. So I don't want this to come across as such a post that is bashing that, as I know it's a sensitive topic in the blogging community. Whether you decide to make money through your blog or not, it does not define you as a real blogger, or even a good one. It's simply a personal choice, an added element that some opt into.
But sometimes people get lost with their writings, for various reasons -whether your blog is your hobby or your job. Bloggers get stressed out, worn out, upset with themselves if they don't meet their own high standards and don't post as much as they feel they should. It's YOUR blog at the end of the day, it's your art, it's your baby. Don't forget that. Enjoy it. Stop being your own worse critic. If you can't update it as much as you would like to, or as much as you feel is the norm -so? (Especially common amongst us chronic illness bloggers). Why are you judging yourself against imaginary boundaries? Stop feeling guilty, just stop it. You are not letting yourself down or anyone else. There is no need to post the obligatory apology, "Sorry for not being around guys", and then explaining why you haven't been posting. I do this, and I hate myself for it. I think it's a habit we all need to get out of and it's something I have been learning to do. When you think about it, it's actually really egotistical... Like, we're simple bloggers at the end of the day. We are not surgeons, we're allowed a day off -and probably no one will notice. I don't mean that to sound harsh, I am simply being realistic about what we are achieving here. Sure, some posts change views, help people in some way or maybe brighten a day just a bit. But to think that society will collapse if we take time out to recharge, or that we owe anything to anyone in this way, is just silly.
I know this might be different though if you have advertisers relying on you, but if you ever get to the stage that your blog is depressing you, or even getting you down a bit -STOP. And think. It shouldn't be like that. And sometimes, it does get to that level. I've heard many people talk about their blogs like they are a depressive burden (in various online groups that I'm a member of). If you are struggling to keep up with advertiser's demands or deadlines and you are beginning to hate what you are doing -just STOP. Is it worth it? Is this what you wanted blogging to be? There must be a happy medium, maybe take less jobs on or have a break and write about something that you love. Perhaps something personal (those posts are scary, aren't they? They are also really liberating, and a good re-charge into getting your blogging mojo back).
*This is NOT a sponsored post*
As some of you may or may not know, I have a condition called dysautonomia (possibly the POTS variety I feel as I have tachycardia issues, but as it's being classed as a secondary condition in my health case, no one actually cares enough to A.) find out which type, and B.) actually treat it). Click the word which links to further info, but in short -it is a default with my autonomic nervous system, which just about affects everything in my body -all the stuff your body does without having to think about it. Heart rate, BP, temperature control, digestion, breathing and so on. So with that said, obviously the symptoms are numerous and everyone can have varying outcomes. Some people can work, some people have digestion issues while some don't, some people can control their fainting or never feel very dizzy at all, while others faint all the time.
The fainting response is in regard to low blood pressure for the most part. Think of like when you (assuming you are an average, healthy person) get up too suddenly sometimes and have a massive head rush, and feel dizzy as an outcome. This is because your body takes a moment to adjust in the change of your posture when you go from sitting to standing, your blood rushes a bit from your head, and so you get a swoosh sensation. In healthy people this is temporary, and you will rarely even notice it as your body adjusts so quickly to the change in movement. With people with low BP/ orthostatic intolerance issues, this head rush is often prolonged (orthostatic intolerance) -your body is an idiot and can't adjust quickly to the change in posture. Sometimes you might not feel too dizzy or sick on first standing, but can have symptoms the longer you stand.
"Woah, wait, what has she done here? What's going on?",
"Sir, should we send blood back upwards towards the brain?",
"No, no, wait a minute. I want to be sure first that she has changed positioning. Leave all that blood down in here legs. Make her heart beat faster, too".
... I don't know which body parts are chatting here, lol, but you get the gist. My body is a dope and I'm allergic to standing up. This is why you'll also notice that I sometimes will wear compression socks (only a recent thing) which I should do all the time, really, but I'm still adjusting. These socks prevent the blood pooling in the legs so much.
It's important to note that in some case sufferers even have high blood pressure, rather than low blood pressure. I myself notice that mine seems to rocket sometimes very temporarily while standing, before swooping low and staying there.
I'm very used to be dizzy and have little tricks to control fainting (not that I even stand or walk much these days, so that helps, ha). I go through phases of being worse than other times. I eat loads of salt to keep my BP up and sit down when I need to. I find I'm not as bad when physically walking, with the space around me changing constantly (I do feel sensory overload but at the same time more stable in ways). It's standing in ques and such when I feel in the most trouble. In some regards an episode of low BP and other associated dysautonomia symptoms can feel like a panic attack -it is the same fight or flight response that you body typically goes through in both experiences. Hence why it can be hard to diagnose or even spot yourself, especially if you are a young woman. You tell a doctor these signs and symptoms, and panic attacks are their go to. Diagnoses can take years, if ever. Other symptoms sound so disassociated and general, as they are pin pointed in every part of your body. It's such a confusing illness!
"What's happening... all the controls seem to be going haywire!",
"I don't know captain, I think we're going to have to shut things down until we can restore full control. I can't regulate the heart rate, BP or any of the main controls"
"Shut it down, go into emergency mode, stat!".
...Something like that, anyway! My body is a fucking idiot. It doesn't know what it's at or doing most of the time, and as a result, when I'm at my most sick it simply goes into shock and has a meltdown. Fight or flight. It literally can't deal with me standing up. Sometimes I may have to sit down, to restore blood upwards to the brain, but other times I simply have to lie down completely and wait it out. Check out this video from Dysautonomia International.
Many of you out there probably possess a donor card, or have expressed to loved ones that when the time comes, if viable, that you wish to save another persons life. And/ or donate blood from time-to-time.
But have you ever considered signing onto the Irish unrelated bone marrow registry? By signing up (via the form on that site) you will be notified the next time they are collecting in your area, or when a possible match shows up in the system.
For a lot of people out there, bone marrow donation saves their lives. Exactly in the way that blood and organ registries do -it is in no way different and should be acknowledged to the extent that they are. Please consider it... I used to be on the bone marrow registry myself but because of my HL history, I am no longer eligible to be a donor (same goes for blood and organs). This is the case for all those who have ever had blood cancer.
It was a big a blow for me to be honest. I had always had an organ donor card in my wallet just in case, and taking it out made me a bit sad. The first card I ever had was acquired from my local library when I was a kid (I'm pretty sure you have to be 18, or maybe it's 16 for the card to count but I insisted, lol). My sister showed me them and explained their purpose. I was amazed by the idea -that this tiny card could actually help save someones life. That the owner of the card could possibly (circumstances of death and quality of organs pending) grant life during their time of death in this way. But I was also utterly confused as to why such an initiative wasn't compulsory.
Bone marrow and stem cell donation saves the lives of women, men and children all across Ireland, who for a number of reasons do not have the option of requiring matches from family members. Leukemia, lymphomas and rare metabolic disorders are among the reasons why someone may require such a donation.
I often hear people with chronic illness comment on how they almost wish they had cancer, so they could receive some real medical care and at least a doctor would take them seriously. It's usually more so the chronic illnesses that there is no actual, specific testing for (like fibro, ME, and so on) and so sufferers are made feel like they are making it up or that no one cares. They don't mean this statement in badness, and maybe I just understand it better from both sides as I, well, have lived it from both sides. Sure there are tests and assessments for dysautonomia/ POTS, joint hyper-mobility/ EDS and hip dysplasia, and the related issues that I have, but it is a fact that society as a whole cares far more about cancers than any other diseases. I'm not taking away from that, that's not a bad thing. Cancer can be deadly, after all. Some forms are even preventable, everyone knows someone who has had cancer or passed from cancer, it has so many forms and truly is an epidemic of great proportions. So naturally enough it is high profiled -and so it should be.
But to those who suffer from chronic illness and other diseases:
I get the frustration of being told - "There is nothing I can do", "I'm not qualified for your case", "I'm sorry, I can't help you", "Have you tried paracetamol?", "You're wonky, you should be in pain"...
And so when I was diagnosed with cancer, sent to specialists who were able to help me, had a team of people looking after my care and side effects, I was honestly elated beyond belief. I remember during chemotherapy getting a really bad rash on my hands, very raw and dry. Pretty normal with chemotherapy. When the nurse saw it during one of my sessions she said "why didn't you tell me??" and gave me some cream to soothe it. I was stunned. Why hadn't I told her? I realised I wasn't used to being unwell and someone being able to help me... That just hadn't happened before. Over the years I had stopped telling doctors things, partly from the trauma of my youth. Being told, "crying won't make you in any less pain", and so on. It made me stop talking about it, especially to doctors. I was so happy by this minor gesture, that I wanted to cry and felt overcome. It was a simple thing but a huge realistion. My whole treatment was like this. I received the best of care and help with all side effects and issues.
I breezed through chemotherapy and radiotherapy with a happy attitude (my chances of survival were high, so that helped). It was often even a joke with my radiologist -she laughed at me in appointments saying I was her easiest patient to date. Never complained, never had issues I couldn't handle. The chemotherapy nurses thought I was great too, and I used to laugh with my hematologist who also seemed a bit stunned by my upbeat attitude and eagerness for any treatment they suggested. Do chemotherapy and radiotherapy have side effects? Yep. But only the healthy are so privileged to be stupid about treatment that is life saving. I was simply elated to receive medical care for something -the fact that it was cancer should have brought me down, but I was honestly really happy.
That's not right. Someones general medical care shouldn't be so bad that having cancer was almost a relief. In hindsight I realise how horrible that sounds, but I just truly appreciated having regular doctors and ones that could help me.
So to everyone out there who has posted a meme in many of the chronic illness groups that I'm in, about how you almost wish you had cancer instead of the illness you do have -I get it. You are, obviously, in TOTALLY bad taste, lol, and you should reeeeeally know this. But I get it. I also get bad taste though, in fairness.
Some photos I took recently of Vertigo, a local band, during a wedding fair in the Ardboyne Hotel, Navan. Setting up, playing and hanging around the hotel grounds. Enjoy!
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