My Life

it is time

it is time to stop torturing myself with poisonous thoughts

it is time to stop crying over things I can’t change

it is time I did things for myself

it is time to stop worrying about other people all the time

it is time to start being a little bit selfish

it is time to take control of all this

it is time to get back to being me

My Life Things Cerebral Palsy and Scheuermann's Related


Hello there lovely person. This is going to be a little bit ranty (and very very lengthy) so if you’re not in the mood for that then don’t bother reading on (and come back soon for a happier, brighter post at a different time!).

Despite writing a post earlier this week see things have been pretty difficult today. It’s been the worst anxiety-day I’ve had since starting my medication (which must be maybe just about a month ago). Naively  I assumed once I started medication my anxiety and depression symptoms would have disappeared. Obviously this is a stupid assumption on my part, but it’s taken me a while to appreciate that medication will not ‘cure’ it. It just helps. Don’t get me  wrong, it works fantastically most days but today was a major blip I think.

Stuff has been pretty stressful. Some of you may know I’m in my final year of undergrad so I’m currently tackling lots of essays (and of course most of my deadlines are around the same time) but I have to be honest, it’s not really my work that’s making things difficult. If anything, work gives me something to focus on, something to take my mind away from other thoughts and it’s generally easier to deal with than the other stressors. Things have been really bad with pain at the minute. I have Scheuermann’s kyphosis – if you’ve read my blog before you’ll probably have stumbled across this – but basically some of my vertebrae in my thoracic spine didn’t grow and ossify properly. Because of this i have a curvature in my spine of 70 degrees + (it’s been a long time since it’s been measured). A normal spinal curve is somewhere around 35-40 degrees, so the added curvature really causes problems along the rest of my spine and my ribs. My neck juts forward at an odd angle, and I have a hyper-lordosis (inwards curve) in my lumbar spine. Because of the curve my muscles have to work harder (there’s no abnormality as such with my back muscles) but they get extremely painful as they’re being stretched over a wonky spine. Basically my back hurts all the time. Some days are good: meaning I can manage my pain enough so that it doesn’t get in the way of living my life. However, some days are unbearable, to the point where even my strongest painkillers don’t always work. My back hurts all over, right up to the base of my head, and to my hips. I get a burning sensation around my spine which becomes very intense (something I’m yet to get looked at) and my muscles feel like they’ve taken a beating most of the time. It’s really very unpleasant. Back pain knocks you sick. I never realised how hard it could be to live with until I was diagnosed at 13. So there’s that. And there’s alos the fact that i have hemiplegia, a form of cerebral palsy. This also causes pain (my muscles on my affected side are always tight) but also impairs my motor skills. I have poor balance and weakness in my affected side. Having cerebral palsy is tiring because you’re constantly trying to work with limbs that don’t always do what you want to do or sometimes make you wobble and/or fall over. It’s difficult, but I’ve had CP since birth after i acquired a brain injury. However, this is another stressful thing. When you add my anxiety and depression to that, things can sometimes get completely overbearing.

CP gives people a heightened startle response. Basically I sometimes jump at things most people would think aren’t a problem. My fight or flight response is triggered by stupid, every day, mundane things. Sounds include (but are not limited to): sneezing, coughing, laughing, shouting, cars beeping, ambulance sirens, dogs barking, fireworks, gunshot in films and door bells ringing/people knocking. Sometimes having people walk towards me makes me jump. It’s not just jumpiness, but an overwhelming sense of dread and fear that collects and pools in the pit of your abdomen. My heart rate shoots up (as it would if I were to be in serious danger) and it completely sucks because I have no control over it. Turns out anxiety makes these reflexes worse, which is  obviously just what I needed.Useless, eh?

Yeah so there’s that. And there’s also the residual things that contributed to my anxiety going on. It was a seriously traumatic time (not saying that to be overly dramatic) but it shook me and it’s taken a while to come to terms with it. I don’t want to bring it up because it’s very unpleasant, but only occured just over a year ago so it’s still very fresh. All these things combined is a recipe for disaster, I’m certain.

So, back to today.

I live next to the communal areas in my house. That’s fair enough, but recently I’ve had a big issue with having to deal with people’s noise levels in the morning (bear in mind the littlest things startle me, especially when I’m asleep and they wake me up) but it’s getting a bit ridiculous. I love my housemates to bits but it’s so unfair for people to be making so much noise it wakes you up. This has been happening for months, I’ve mentioned it before but nothing changed.

Today, I completely and utterly lost it. I snapped. I couldn’t handle it. Emerging from my room with sleepy eyes, a ridiculously racing heart and tears welling up, I shouted at people. I swore. I told people I couldn’t deal with this anymore. It’s got to the point where though I appreciate people need to be up, it doesn’t excuse people making a ridiculously loud sound, capable of waking others.

Being in pain means painkillers. Painkillers mean drowsiness. Drowsiness means I need sleep, and I need sleep more than ever at the minute. My body is reaching breaking point, and chronic, severe pain makes me irritable. I’m a mess. I hardly eat unless Drew cooks for me, and some days I’m so anxiety ridden I don’t want to leave my room to even make a cup of tea. Everything is too much and I’ve had enough and today was the final straw.

I don’t feel good about shouting at people.

In fact I feel humiliated, embarrassed and stupid. I feel like I’m in the wrong. I know we’re all guilty of being so wrapped up in our own lives that we forget the needs of others but I’m always so anxious about upsetting people. Making sure i make as little noise as possible is key for me. I don’t sing anymore (I’m classically trained so like to sing a good song now and then)  because I worry people will get angry or sad about having heard me. I tiptoe through the house, I close doors gently, I’m careful about making drinks in the kitchen at night etc. If  I’m having a bad day, I leave the house so that people don’t have to put up with me being in pain. i hate the thought of making someone feel in any way uncomfortable, so much so I sometimes go without rather than risk it and have people be sad. I’d like to think I’m considerate; I really try to be. I don’t leave any dirty pans or pots in the kitchen because people shouldn’t have to deal with my mess. I also don’t even leave my shower gels and shampoos and toothbrush in the shower because, again, I worry it’ll take up space that someone else might really want to use. These things sound stupid, i’m sure. But it’s the way i do things because I’m so fearful of a negative reaction (confrontation is a HUGE trigger if you haven’t already guessed).

Despite all this I haven’t had one morning without being startled awake in over a month. it’s awful. And coupled with the fact I have pain a lot at the minute, it becomes seriously detrimental missing out on sleep. I’ve asked politely before, numerous times, hoping for a little bit of consideration and respect in the morning (explaining all of the above)  but I don’t feel like I’m getting it. Today shook me up so much this morning i cried hysterically during the shouting and immediately afterwards. When Drew came over to visit me I panicked because when i heard a knock at the door i didn’t know it was him, and i was petrified at the thought of having to leave my room and see someone i didn’t trust.

I sat under my blanket and teddies and cried, before deciding I better check who it was, albeit very reluctantly and with tears streaming down my face. Thankfully it was Drew, who gave me a big hug and sat with me for a while. He made me some lunch and a drink and just generally cheered me up and calmed me down. I’m so grateful for Drew. He really is amazing with me and i couldn’t ask for anything more.

Today was just terrible. And now I’m sat in my room again hoping i don’t need to go to the toilet or anything because I don’t think I can face anyone. I’m hoping this passes and I’m hoping I get it under control. It’s a gnawing, awful feeling. Anxiety can be just so incredibly debilitating.

After this morning I’m hoping for some consideration as I approach this final, painful, stressful hurdle. I know i can do this  and I know the end is in sight but i just need to have some patience with myself.

I treat myself as if I’m superwoman: I rarely remember I’m no superhero. I can’t do it all and it doesn’t hurt to take a little time out every now and then.

Sorry for the poor writing and everything. I hope you’ll forgive me.

Hopefully I’ll check in next time on a brighter note. Look after yourselves,

Heather x