Anxiety, Body image, Challenging, Change, Chronic health condition, Chronic Pain, Death, Depression, Doctors, Emotional eating, Exhausted, Family, Generalised Anxiety, Grief, Menopause, Panic Attack, rare disease, Self confidence, Siblings, Social Anxiety, Survivors guilt, Tired

Why is life so hard?

Why is life so hard? Why do we have so many struggles? Why can’t life be easy with no struggles and just happiness? Why do we have to have bad times so we can appreciate the good times? Just once I would like things to go smoothly and to enjoy life. From the moment I wake up to the moment I finally fall asleep, it’s a struggle.

Life is pretty shit for me at the moment and that’s just facts. I need things to change and to get better because I can’t keep going on with how it is right now. My physical health drags my mental health down until I’m just this miserable, depressed, anxious in pain mess that no one would want to be around. I mean, I don’t even want to be around me sometimes!

I’ve began tapering the steroids now and I’m also on immune suppressants so hopefully they work and can stop or lessen the debilitating pain I get daily. I also saw the gynaecologist at the hospital and I am officially on the wait list for a pelvic floor Botox trial and also an exploratory laparoscopy to see if there’s any endometriosis causing my pain. I once again have another ingrown toenail so I have an appointment with the surgeon next week to get my third toe surgery. My mental health is not very good at the moment, I’m struggling with the thought of having this rare disease (Mesenteric Panniculitis also known as Sclerosing Mesenteritis) that doctors don’t really know how to treat or anything about. Yes, I am on medication for it (the steroids and immune suppressants) but it’s not a definite that it will help, it’s more of a lets give this a go and see how you respond to it kind of situation. I have a lot of anxiety surrounding my physical health so trying to deal with that is fun… not.
Steroids, what shitty but useful little things they are. The side effects from those are causing my mental health to get worse. I now have another chin that I didn’t have before, I’m extremely irritable and moody and I also now have a beard! I haven’t slept well in over a month, I have acne, I’ve gained weight and I just feel awful about myself. I can’t even look at myself in the mirror right now. The immune suppressants side effects aren’t fun at all. So far I’ve got worsened fatigue, migraines, whole body aches and basically feel like I have the flu without having the flu.
The menopause is going ok. The main problem is the hot flushes but they’re bearable so I’m ok with that.

I just want to know why life is so hard though. Why do we have to struggle and why do some people have a great life with no struggles? Why are some people poor and others overwhelmingly rich? I don’t understand why some people have such a hard life and others don’t; its not fair. I try to find at least one good thing in every day and yet lately I can’t even find one good thing. I tell myself my affirmations every day and I manifest, I connect to my spiritual side and do what I believe in and yet, things just seem to not change or they get worse! I just don’t understand it. I don’t understand the meaning of life. I feel so lost and scared and confused. I want answers and I want my life to change for the better.¬†

I feel like I’m going to cry all the time, I’m constantly full of anxiety and I basically feel like the world around me is spinning into a deep dark hole and I’m going to fall down into it. I’m only 19, I don’t want a life long rare chronic illness that may or may not shorten my lifespan. ¬†

It’s also anniversary season again so that doesn’t help things. March 8th was the 6 year anniversary of my brothers cancer diagnosis and next up is his birthday where he would have been turning 11 and then the anniversary of his death and then the funeral anniversary. All of those within the span of 12 weeks. Great.

I just want to curl into a ball under my blanket and never come out. I don’t want to face another day full of pain and anxiety and grief, I’m exhausted and over it.¬†

I feel so helpless and hopeless. 

Keep safe,
Maddy xoxo 

Twitter: @ChronicMaddy 
Instagram: @ChronicMaddy 

 

Featured Image: https://thewinninglane.com/why-is-life-so-hard/

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Anxiety, Body image, Challenging, Chronic health condition, Depression, Doctors, Exhausted, Family, Friends, Gastroparesis, Panic Attack, Self confidence, Social Anxiety, Tired

I’m struggling and I’m scared…

I’m not really sure what to write in this post because I’m not really sure how I’m feeling about everything… I think the main struggles I’m going through at the moment is my health and trying to create a life around my health. So lets talk about my health.

I got three blood tests done and they all came back positive for Systemic Scleroderma (I’ll just call it scleroderma). Scleroderma is an autoimmune disease that changes the amount of collagen that you make; it gives you too much collagen causing very painful skin, muscle and joint problems and it can also affect your organs causing stuff like kidney failure and lung disease. There are many different types of scleroderma and the one I tested positive for is the systemic one which means it attacks my organs along with my skin (side note: I could have another type of systemic scleroderma that doesn’t affect your skin at all but I’m not sure yet if I even have it). I have an appointment with a rheumatologist in October to get checked out more and to get more tests done to see if I for sure have it, so right now it’s a waiting game. I’ve also been having so much more abdomen/bowel/pelvic pain lately and I can’t find a cause for it. I got a colonoscopy, ¬†gastroscopy and a CT scan done and all of those tests came back normal so I have no idea what’s causing the daily double-over pain I’m getting. I honestly can’t tell you how bad the pain is and how hard it is to handle on a daily basis. I’m also booked in to see a gynaecologist in October because I’m starting to wonder if maybe all my pain isn’t actually in my bowel but on the outside with something like endometriosis. I’ve always had severely painful and heavy periods but I’ve always swept that under the rug but maybe it’s time I start looking out of the box because I can’t handle to be in so much pain anymore. I’m also not sleeping well and if I don’t have something to help me sleep then I will literally not sleep all night. My psychiatrist gave me two medications to try and one of them I was allergic to and the other one doesn’t help me at all so once to twice a week I’m taking seroquel so I can finally get some sleep because me and not sleeping don’t mix well together.¬†

In my title I also wrote that I was scared and it’s true, I am scared. I’m scared because I don’t know what’s wrong with me and what’s causing all this pain and why my bloods are abnormal. I’m scared because I don’t know how to help the pain and because I have no idea what’s going to happen to me. I don’t know how to create a future when I don’t know what’s wrong with me and also when I’m so tired and in so much pain. How am I meant to do anything when I have a hard time getting off the couch? I just don’t know what to do. I do know that I want to finish VCE through online schooling again but then all the ‘buts’ come and I psych myself out of calling the person I need to call. A major thing a part from the pain and fatigue that’s stopping me from calling them is the fact that my brain fog is so bad lately that I’m having a really hard time reading and putting a sentence together. I’ll proof-read this post but I’m sure you’ll find so many mistakes reading it and that’s because I just don’t see them. And also, what if I completely suck and can’t even pass year 11 and 12, I mean I passed year 10 by a millimetre. ¬†

I have other stuff going on that I don’t want to talk about but it’s stressing me out and causing a major panic attack.¬†

I’m just having a really hard time with where my health is at and trying to remember and remind myself that I can still have a future even if I do have scleroderma or endometriosis and that I can make a life around the pain. I need to work on reminding myself that I am worthy of a happy and fulfilled life and not a life full of pain and loneliness because that’s another thing, I am so freaking lonely. I have my mum and I know that I’m lucky because some people don’t even have one person and she’s my best friend who I can go to with anything but sometime it’s not enough… I need someone else to hang out with me and to be my friend. I need some more support.¬†

I also saw a dietician the other month and a part from telling me that she was concerned about my pain and that I needed to get that checked out, she said that she couldn’t do anything to help me to lose weight because I’m eating right and doing what I can but it’s really hard with my stomach and it’s condition because it doesn’t digest properly, I have no metabolism and what I can eat isn’t that great. I can have some veggies and salad but too many and I feel so sick and have such a bad stomach ache. It was hard to hear that she couldn’t do anything to help me lose weight because that’s still a big problem I’m trying to deal with.¬†

I don’t think there’s anything else I want to talk about…. I just thought I’d sit down and try to write out some of my feelings and worries…¬†

Keep safe,
Maddy xoxo 

 

Featured image: https://www.channelweb.co.uk/crn-uk/news/3026573/why-are-outsourcers-like-capita-and-bt-struggling

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Anxiety, Body image, Challenging, Chronic health condition, Depression, Fat shaming, Gastroparesis, Generalised Anxiety, Heat, Mother and daughter, Panic Attack, Self confidence, Social Anxiety, Summer, Vegan

Summer sucks, bring back winter.

Summer. You either love it or you hate it, and for me, I despise it. I hate everything about summer from the heat to the bushfires to seeing perfect skinny people walking around showing their perfect bodies in shorts and bathers while I’m over here in my black maxi skirt and top trying not to go up in flames from overheating like a car engine.

Not only does summer make my self hatred and lack of confidence go down even more, it makes all my health conditions 10x worse. My chronic fatigue gets worse, my POTS gets worse but the main thing summer does would have to be the fact that my anxiety and depression plummets even more.
Winter is good because everyone is bundled up in jackets and scarves and you fit in, but in summer people try to wear as little clothes as they can without being arrested for public indecency. For someone with no confidence and self esteem and who finally gets the courage to go outside, it is so hard to see so many people showing off their bodies and walking around like they don’t have a care in the world. I on the other hand, spend an hour trying and retrying all my clothes on to see what I feel looks even remotely ok on me and even then I’m still hating on myself and just want to hide. I hate my arms so much that when it’s 35degrees outside I’m still wearing a light jacket-y/shawl thing so my arms aren’t showing. The other problem is that I only like to wear black maxi skirts so when I have to walk anywhere the inner part of my thighs start to chafe and then I’m stuck with a horrible burning and stingy feeling every time I take a step.
Another problem I have when trying to find clothes for me to wear is that because I’m so bloated all the time from the Gastroparesis I look pregnant and so I can only wear loose fitting tops and if I do find a dress that I don’t hate and doesn’t highlight my muffin top, I have to suck my tummy in the whole time I’m out and that sh*t is painful after a little bit!

So between the struggles of trying to find something to wear and the inflamed self hatred I have from seeing skinny people out in their shorts, I end up staying indoors most of summer! That gets expensive though because then you have to have the air-conditioner on all the time and those bloody rising electricity and gas prices… annoying much?!

I have a hard enough time regulating my internal thermostat when it’s not boiling hot, but when summer hits I basically shut down; I overheat and feel like I’m going to pass out alot and I can never get cool. My hot flushes get worse and the pounding heart I get thanks to the POTS also gets worse too. Oh and sleeping! My god that’s an even bigger nightmare every night. I toss and turn and then I get Restless Leg Syndrome so I have to stand up and try to walk around my house until the pain of that goes away but then when I lie back down it comes back again. I end up sweating and panting because my two fans just aren’t enough to get me cool so I have to get up and go to the lounge room and sit under the aircon for a little bit until I’m cooler and then try to get some sleep. Oh and if I had to go outside that day and walk around, I also have to be mindful of the chafing I experienced so I can’t sit or lie down with my legs closed so that makes trying to sleep that little bit harder.

I wish I had the confidence to wear whatever I wanted whether it be a cute dress or a skirt that goes above my knees or a cute singlet top without worrying about how I look but I just can’t do it. I become even more aware of how I look and have a harder time with my anxiety and depression and all those unhelpful negative thoughts I get. I am constantly trying to cover up my stomach with the little jacket/shawl thing I’m wearing so no one can see my love handles or that my bloating is really bad that day and I can’t suck my stomach in at all so I end up looking 7 months pregnant (this is not an exaggeration btw, I genuinely end up looking heavily pregnant sometimes because of the bloating associated with the Gastroparesis. On a ‘normal’ day I look around 4-5 months pregnant and I can kinda suck my stomach in.) ¬†I end up fidgeting more and have to make sure that my arms are covered and I am so in my head that if I’m spending quality time with Mum, I’m not really there with her because I can’t relax and enjoy myself.
I end up feeling like a sweaty, pregnant looking beached whale. 

Summer sucks all around for me and I don’t know if I’ll ever enjoy it…¬†

Keep cool to the people experiencing summer at the moment and to the people in winter right now, I’m super jealous.¬†

Maddy xoxo 

Twitter: @DMWAAG
Email: depressedmesswithanxietyandgrief@outlook.com

 

Featured image: https://me.me/i/i-feel-like-the-wicked-witch-in-this-heat-im-18479222

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