Confessions of a chronically ill mum #11

I started out really unhappy writing this one. I’ll forewarn now that it includes some glumness! (Maybe a lot) As ever though, I keep it honest.

The beginning off the week was tough going because I was exhausted from Ciara’s party and already feeling a little run down. Then Wednesday night about midnight I started, (pretty much out of nowhere) vomiting. It was awful, and it went on for 3 days. When the vomiting finally subsided it started coming out of the other end. Vile. And I cried, a lot. It was my birthday Saturday and I spent it in bed, crying. Monday we were due to go on holiday with the kids to Dorset and Shaun began vomiting for over 24 hours, so we weren’t able to make the trip as planned.

Life: It’s just life. And it is! It’s one of those things that can’t be helped or avoided or unpacked, because it just happens, people get sick. But when you get sick on top of your everyday sick, I’m not gonna lie it kicks you a little harder in the kidneys. Vomiting always makes me feel quite heightened anxiety because it’s a involuntary action. I have no control over it, and no power to stop it. I’ll be honest it’s taken a lot from me this week. I’ve felt pissed off at a ruined birthday and genuine frustration at how long my body takes to recover from ‘everyday illness’ whilst managing its’ several chronic illnesses. Taking a bath at my mum’s yesterday to avoid sharing the only bathroom we have at home with Shaun, I felt sick and faint.

Kaiser gave me zero grace in my recovery. He woke up at midnight for 1.5 hours and then again 2-4am both nights whilst Shaun was ill. Again, just life stuff. I keep repeating the ‘it’s just life’ sentence, not because I’m minimising my experience. I’m not. It’s been awful. But because, I have spent many years battling out of the ordinary things. Things like having a baby and spending nine months in therapy because you believed with every ounce of your being that you were crazy, incapable, and unsafe. Things like getting pregnant and suddenly being unable to walk, driving around in a mobility scooter and eating your way to gestational diabetes. Things like never being able to show up because your illnesses’ block you at every turn. Those things are not just life, they’re my life, sure, but they’re not everybodies. Sickness bugs though – they are a free for all and one of the things I learned during my time in therapy, is that I have to give a certain level of acceptance to this everyday stuff and not let it consume me.

I confess that I have always been a person that reacts negatively to stress. Where some people might shrug off the everyday stuff, I take it and wrap it around me in layers. I’ll also go as far as confessing to having used it as excuses over the years. Yet, I’ve also felt the weight of it. Learning to accept certain scenarios doesn’t mean I’m ok with them. Nor does it mean I don’t have to work hard to live through them, it just means, simply - that I have to prioritise peace. 

Moving on from all the sickness, and bugs and life as a disabled mum, for a second…. If you’ve been following me on socials you’ll know that I’m fundraising for IAPMD by way of a raffle. It was my intention to make a fuss about this via my birthday weekend and really try and get some momentum going. Unfortunately, you know what, put paid to that! However I have managed to raise significant funds in the last few days and we’re now on a grand total of £308 smashing my self set target of £250 out of the park. I’m thrilled. And forever grateful to all the strangers on the internet that want to support a cause close to me. Of course my friends and family too, but strangers on the internet are definitely more frivolous with their cheering, that’s for sure! (Just stating an observation, don’t @ me!)

Today, we made it to Dorset. I am still expecting one of the kids to start vomming any second but I shan’t dwell! We drove down this afternoon, made it to the beach for a chippy tea and then holed up in the caravan and listened to the rain pelt it’s tin roof. I didn’t realise how much I needed this break until I arrived here and my shoulders dropped. Tension leaving my body, anxieties being swept up with the spume of the sea, literally. I don’t even apologise for my over the top description of just how sacred this trip is. I needed it, the kids needed it, Shaun, though still feeling fragile, needed it. I hope the bastard that is norovirus and his mate covid manage to stay the fuck away from us for the rest of the week and beyond.

Confessions of a chronically ill mum #3

Where to start. Good news or bad? I think I’ll start with the good. The weekend just passed, my husband and I went away for a cheeky, little, couple’s soirée. We travelled about an hour away from where we live in Bristol, to the Mendip hills and stayed in a holiday cottage. It was divine. The most exquisite bedroom complete with a roll top bath and Netflix, we spent most of our time in there catching up on….. you guessed it, sleep!

It also had a wood fired hot tub, we only successfully heated it up once, so the following day we had to cold dip instead! Suffice to say that ‘dip’ was much shorter in duration!

I’ve mentioned in previous blogs that I don’t really drink alcohol anymore. Only on very rare occasions, not because I’m a martyr or anything like that, just because my health doesn’t really allow for it these days. I was worried about how we would entertain ourselves without booze as this is the first time we’ve been away together since our wedding in Jan 2020! I needn’t of worried though, we had such a lovely relaxing time, chilled, acted stupid and just made the most of not having a child hanging off an arm each for three nights! I also managed to get through the weekend without any real flare issues. I did have hormonal cramps on one of the days but given the pain levels I’m used to, it was manageable and I’m so thankful for that.

Fast forward to Tuesday and I received a letter I wasn’t expecting. I’ve had a lot of tests recently because of a decline in my health and new unexplained symptoms. One of the tests was a standard blood glucose test and one of them was a cholesterol test. My cholesterol has been high for some time and I’m now, at aged just 33 being told I’m at serious risk of developing cardiovascular disease in the next five to ten years and will require lifelong medication to prevent the risk of heart attack and stroke. I had gestational diabetes in pregnancy and was prescribed both oral and injectable insulin. It was hell on earth to be honest, I became obsessed with my sugar levels and racked with anxiety and panic. My blood glucose result is high again and I read it and cried, my father has type two diabetes and because of having gestational diabetes I am high risk already. I believed immediately I had type2 and would need insulin again. It turns out after reading the results properly, I’m in pre-diabetes or borderline diabetic. Which means: I need a lifestyle overhaul immediately.

It’s safe to say despite not yet being diabetic I am still devastated by these findings. On top of, Fibromyalgia PMDD Migraine SPD and Post Herpetic Neuralgia (reoccurring shingles pain) and catching covid at Christmas and currently being screened for heart and breast problems, I’m already in a pretty bad way. If we add in the mental health stuff too, Panic disorder and Perinatal Anxiety you might be starting to understand, as to why this has devastated me so much. Or you might be thinking I’m a hypochondriac, I wish I was. But sadly, all of this is very real.

At the moment, I feel shrouded in guilt and shame around having so many health problems at 33 years old.

That might sound crazy, because I didn’t ask for any of this, but I haven’t always followed advice either. I haven’t always done the right thing when it comes to self care & I’m struggling with that, because now I’m having to live with real life consequences.

I’m struggling with it because I have two kids & I feel like they deserve better than what I’ve been able to give them. I can’t even get decent life insurance with a premium that I can afford because my health is in such a poor state.

I feel guilty when I can’t get to Kaiser fast enough because my body isn’t playing ball or when I can’t rock him to sleep or carry him upstairs. When Ciara sees me in bed for the 1000th time on a weekend (the only time I can get a break when my husband is home) and asks me when I’m going to feel better, it makes me feel like shit.

I mentioned last week that I’ve let myself go, particularly in reference to my weight and I know some people reading this will think, just lose weight then! But it IS hard when your body punishes you every time you exercise and your mobility is extremely limited.
It IS hard when you’ve given up lots of the things you used to enjoy, and now your main thing to look forward to is what you’re eating.
It’s hard when your hormones upturn your life every two weeks and your hunger is cloaked in rage and desperation. It’s hard when you have no energy to prepare food, and you can’t open the lid on a jar, or lift a pan without help. It’s embarrassing. I am embarrassed. I’m ashamed to admit these things, they are the things I keep hidden or try to do independently and pay for afterwards. I’m telling you now, because it’s the truth. And because I know I have to take some accountability for the state my health is in.

Confession: These are excuses, but (hear me out) in some cases they’re valid excuses, because they do affect my ability to live a healthy lifestyle. And on top of those excuses I have been making positive changes. I’ve made so many I can’t even tell you, especially in direct relation to my mental health. However, physically it’s not enough, there is no alternative. I have to start somewhere, I have to lose weight, I have to try and build on my fitness somehow, and I have to start now. 

I’m not wallowing in this latest health hit. I refuse to do that. I cannot be overcome with additional anxiety about my health. I cannot change these things overnight, but I may be able to limit some of the risks if I start now.
So here I am, baring it all. Starting where I am and working with what I have, now, today. (Well actually I started yesterday, as soon as I read the letter.) It’s not going to be easy, but I can’t waste anymore time on excuses. I can’t just wait and see. I have to take drastic action.

I have to take action, for my family.

If you or someone you know lives with any of the health conditions mentioned you can access information about where to get support via the hyperlinks. 

Misophonia – What is it?

I am often overwhelmed by noise. It makes my skin prickle. I never used to feel like that. Not really. Then I had a kid who screamed for 15 hours a day every day for 9 months and I forgot what quiet felt like.

But that noise sensitivity did not end when she stopped screaming. I get increasing amounts of rage about noise. It could be listening to someone eat loudly whilst I’m trying to read. Having a husband who snores is a prime example of the rage I experience with repetitive sounds. If you have a husband/wife/partner who snores you will understand.

If Ciara is talking and someone else tries to speak to me, like I will literally tell them all to shut up and speak one at a time because I cannot cope with the pitchy sounds of their voices permeating my brain. Take zoom meetings for example, they boil my piss, because nobody knows when to talk and everyone talks at once. If I’m reading or working I have to do it in silence. If I’m eating and I can hear your chewing over mine I might tell you to stfu too.

It’s no surprise that the level of rage I feel increases during my luteal phase and sometimes I will literally (and ironically) scream for quiet when I’m due on my period. Or when I’m tired. Or when I’m in pain, and sometimes when I’m feeling perfectly ‘normal’ whatever that is.

Today I’ve been working from home and the dog, has been noisily gnawing at shit that isn’t food. My daughter came home from school with 25 tales about her day that she needed to tell me all at once, and she is currently downstairs learning letters and is speaking about 5 octaves too high in triumph of her achievements. I am seeking (unsuccessfully) the quiet my brain is desperate for in my room.

I know it’s a joke really, people with kids should know better than to get uptight about noise right? But I cannot zone out. My neighbours noisily run up and down their stairs every night between 9pm and 11pm I dunno what the fuck they’re up to but as soon as I hear it I cannot focus on anything else.

I know it’s not rational and I know I need help because losing my shit every time someone disrupts my quiet is not practical or productive. Give me silence and the sound of my own heart beating would probably still piss me off. So what is this random condition I seem to have acquired – I know what you’re thinking ‘another condition’ but ‘hear’ me out. This condition is called Misophonia, and it’s way more common than you might think.

The sound sensitivity is a real thing, and it’s most commonly found in females. Not everyone will experience the same reaction, for some it may be mild and for others complete extremes. We’ve established my default setting is extreme, as is my reaction.

It’s unknown what causes Misophonia and it isn’t suggested to be brought on by one specific event but can occur at anytime during our life cycle.

For me personally my go to emotive reaction to noise is always rage. It’s swiftly followed by the need to flee the scene. Sometimes I leave the culprit and take myself outside to gulp for air. No exaggeration. I once stood in a food queue with my husband (then boyfriend) and had to leave because the person in front of us did not stop talking in an animated pitch and I couldn’t for all my reasoning zone out. Sometimes it’s a background noise, sometimes it’s someone speaking and other times it’s a barely noticeable minuscule sound that my brain has sought out.

There isn’t much available in terms of treatment, definitely not in form of medication, but after research I’ve found there are some things I can do that might help. Like expose myself to specific sounds on repeat and try and convince my brain it doesn’t want to smash the house up in response.

I’ve decided to set myself some trials because let’s face it telling a customer to shut the fuck up for talking too loudly or too fast isn’t appropriate. Quieting your family when they have something to tell you, isn’t fair. And smashing the house up isn’t an affordable or constructive escapade. I’ll keep you informed with my findings but for now if you think you have misophonia check out this article on Web.md