Anxiety, Challenging, Chronic health condition, Chronic Pain, Depression, Doctors, Exhausted, Gastroparesis, Generalised Anxiety, Panic Attack, Social Anxiety, Tired

I’m so beyond exhausted and over it

It’s been five years of pain, tests, hospital visits, being told it’s all in my head, countless doctors, doctors not knowing what they’re doing and doctors not knowing what else to do for me. After five years I thought that I would be better and all my conditions would be in remission and yet I’m actually just getting worse and not better. In the past six months my health has dramatically declined and it’s scary.

My itchy scalp that I’ve had for the past two years is worse than ever, It’s literally itchy 24/7 and I can’t do anything about it, neither can two dermatologists who couldn’t find anything visually wrong with it. I’ve been suicidal because of how itchy it is, it keeps me up at night and I’ve scratched so much that I’ve damaged my scalp and my hair is falling out. I’ve also been feeling suicidal lately because of how tired I am. I’m tired of the doctors and doing all the things that they tell me to do and not seeing results. I’m tired of the medication and I’m tired of the pain. I can’t stand the pain anymore. I can’t stand not knowing what’s wrong with me and I’m exhausted from being tired all the time. I thought that in five years the chronic fatigue syndrome would’ve gone into remission and I’d be able to do more in my life, but nope, I’m just as tired- if not worse- than I was five years ago.

There’s only so much one person can take before they give up and to be honest, I’ve given up a little bit. I am still alive though and I am still looking after myself and that’s what matters right now. I want to find out what’s wrong with me. I want to find out what’s causing me so much pain and this itchy head and I want to get a treatment plan that works. I have not gone through five years of hell and pain to end up not knowing what’s wrong with me. I would just like to get some relief from the pain and the itchy head though, that would be really nice. I would also like to wake up in the morning and not be so tired that even though I have to pee really badly I can’t get myself out of bed until I’ve nearly wet myself. 

As of now I am taking my pain meds to help try and manage the pain, I wear cotton gloves to bed so I don’t scratch my head at night, I’m on antibiotics to see if that helps with my bloating and to see if I have SIBO and I’m seeing my pelvic floor physio once a month to work on the pelvic floor dysfunction and the bowel incontinence. 

I don’t think I’ve ever really talked about the bowel incontinence and that’s because I’m embarrassed about it. It’s not fun to be out in public and then all of a sudden have to run to the toilet so you don’t sh*t your pants and be so worried about the fact that you are so close to pooping yourself in public. Just the other day I was out and luckily enough there was a hospital right next to me so I could speed walk and try to find a bathroom before I had an accident. The treatment that I’m doing for it is also embarrassing, it’s called rectal balloon training and it sucks. 

The itchy head feels like ants crawling on my scalp combined with a burning feeling and it won’t stop. Like I said before it keeps me from sleeping and it’s itchy 24/7. I’ve tried so many shampoos and lotions and meds and nothing will help it. It’s making me suicidal and is the main thing apart from my abdo/bowel pain that is getting me so down. I’ve got a referral to a neurologist now to see if they can help me seeing as how no one else can figure out what’s making it so itchy.

My gastroenterologist said that the CT scan and ultrasound I got done might have showed crohns disease but it might also be nothing so he wants me to start steroids after I see the gynaecologist and see if the steroids help the pain. I’m seeing the gynaecologist in October and I’m going to ask her about endometriosis as a possible cause for all my pain and womanly problems. 

All in all, I’m not feeling too great and having a really hard time. I’d like the pain, fatigue and itchy head to fu*k off. I’m keeping safe though and talking to people and have a support team. I’ll be ok, just right now I’m overwhelmed and reached my limit. My anxiety has also been really bad so that sucks. 

Keep safe, 
Maddy xoxo 

Twitter: @ChronicMaddy <— 

Featured image: https://me.me/i/shes-strong-but-shes-exhausted-r-h-sin-2745442

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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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