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, Gastroparesis, Grief, New housemate, Panic Attack, Siblings, Social Anxiety, Tired

Life Update

It is the 4th of March and in 4 days the 12 weeks of hell will start. It’s the 12 weeks of hell because on the 8th of March my brother was diagnosed with his brain tumour and then on the 30th of April it would’ve been his 10th birthday and then on the 31st of May it is the 5 year anniversary of his death and then on the 5th of June it is the 5 year anniversary of when we buried him and said goodbye. From the day he got diagnosed to the day he died it is exactly 12 weeks… So I’ve got that to look forward to! <— Insert very heavy sarcasm.

A month and a bit ago I got some blood test results back that weren’t too great at all. One of my markers was a low positive for Scleroderma which is a very serious and horrible disease. I went to a rheumatologist and he tested my bloods again and they came back as completely negative which is great! I really didn’t need another health problem. I also went and saw my gastroenterologist and I have to get another colonoscopy in a week to check for stuff like Ulcerative Colitis because my bowels haven’t been too happy with me lately. He also gave me some new pain relief that should hopefully actually work. I’m nervous about the bowel prep because my stomach can’t handle that much liquid and it’s so sensitive and the bowel prep is some nasty sh*t. I’ll do my best but I’m really not looking forward to it at all.

I’ve started a new diet to try and help my lose the weight I need to lose and that’s the 5:2 diet. For two days a week I only eat 500 calories and then the other five days I eat healthily and my normal calorie limit. ¬†I’m also trying to walk on the treadmill every day or take my dog to the dog park and walk around that a few times.

I’m looking into maybe doing year 11 through Distance Education to get my brain doing something and to get a sense of achievement and accomplishment at the end of the day so I don’t feel like I’ve achieved nothing. I have to call the co-ordinator back and ask her a few questions on whether or not they can accomodate all my issues.

I’m still seeing my psychiatrist, psychologist and social worker. My psychiatrist’s fix to all my issues is to go catch a train and get me using public transport. Yes, it would open up more ‘opportunities’ for me to do, but at the same time, what exactly can I go do with my mental health issues and physical health issues? Even if I can push past my anxiety and catch a train or bus, my fatigue and stomach pain is too bad for me to actually do anything. So I really don’t see how pushing myself to catch a train is going to help. Also, when I do push my anxiety, fatigue and stomach pain to catch a train, I’m going to end up pushing myself too much and then take 20 steps back and be bed ridden for a week.

I had to stop my sleeping medication because it was making me so hungry and I was putting on weight which doesn’t help my mental health at all so now I’m not sleeping much and the sleep that I do get is poor and full of nightmares and tossing and turning. Lack of sleep also make my mental health crapper and I don’t have the same resilience to my life and therefore I have to fight even harder to stay out of the depression hole with no energy to spare. It’s exhausting not sleeping.¬†

Things with the housemate are still sh*t, awful and a major stress. He’ll be moving out very soon fingers crossed!¬†

Basically nothing has really improved at all and I’m still struggling and trying to do my best!¬†

Keep safe everyone,
Maddy xoxo 

Twitter: @DMWAAG
Email: depressedmesswithanxietyandgrief@outlook.com

 

 

 

 

 

Featured Image: http://www.beautybabbles.com/2014/09/a-little-life-update.html

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Anxiety, Challenging, Change, Chronic health condition, Death, Depression, Doctors, Exhausted, Family, Gastroparesis, Generalised Anxiety, Grief, Mother and daughter, Panic Attack, Siblings, Sisters, Social Anxiety, Step-father, Tired

2017

Well another year is over! I survived another 365 days of being chronically sick, mentally sick and grieving. I stayed alive to see another year through. I should be proud of myself right? I wish I could say that 2017 was my year, but it really wasn’t.¬†

Here’s an overview of what happened in 2017:

The best thing to happen in 2017 is that I got my puppy Asher in June! She is the sweetest little cavoodle, although she does have a bit of a mean side like her Mum… (me)ūüėȬ†She is now 8 months old and going through her terrible threes a little bit. Yikes, indeed. But when she’s not running around trying to chew everything and destroy tissues she is loving and loves to give you hugs and affection. She has been a great distraction and friend for me but that’s not to say that it’s been easy looking after her. There are some days when I’m just too exhausted emotionally and physically to give her what she needs (a walk, attention and to be played with ect) and that’s where my Mum steps in. Sometimes I wish that I didn’t get her and have the extra responsibility but I guess that extra responsibility is what I need to make sure I don’t become a complete hermit and let myself get sucked into the dark hole of depression and lay in bed all day. Asher makes me get up out of bed, feed her and look after her. I love her so much and could never re-home her but I’d be lying if some days I thought it would be easier without her… Those thoughts usually only occur when like I said before, I’m exhausted -usually from life- I’m in a lot of physical pain or when I’m having a really hard time with my anxiety and depression. It’s nice though that when I am feeling so down she comes into my room and climbs onto my bed and attacks me with her kisses and hugs. She can make me smile when I feel like I might never smile again.

Here’s a photo of one of the funnier ways she’s fallen asleep. ¬†

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She also has her own Instagram page if you’re interested!¬†https://www.instagram.com/asherthecavoodle/

There was also a lot of bad sh*t happen in 2017, mostly regarding my physical and mental health. My physical health got so much worse which I didn’t think was possible but I was so wrong. My chronic fatigue became unbearable to the point of me literally not being able to get out of bed or I was able to just make it to the couch and that is where I stayed for the rest of the day. My gastroparesis also went through a couple of pretty bad flares which left me in a lot of incredibly bad pain and nausea. My medication for that also stopped working like it used to so I stopped that for about a month to give my body a break from it and just stuck to soft foods while I let my body rest and now I’ve been back on that for the past few months. I didn’t lose anymore weight, I actually put about 2kgs back on. Dammit! I tried to walk everyday but between my physical health and mental health I had a pretty hard time with that.¬†

I joined my local youth programme within my council and went to one of their programmes which was once a week for 4 weeks. That didn’t help at all with anything and was really just a waste of time. I never heard back from the youth worker after that finished though so no more help from them.¬†
I went to a programme at the outpatient pain clinic at my local hospital. That was for two days and once again, I didn’t find helpful at all…¬†

I really suffered with my mental health. There was a period a few months ago where I thought I was going to end up back into the psych ward but I was able to medicate myself and find a way out of that suicidal hole. I still have extremely bad anxiety every day so me going to both of those programmes I mentioned above was such a big deal for me even if I did come home and have a  total breakdown and panic attack over it. 
I continued to see my psychologist regularly and even spoke up one session and told her that what we were doing and some of the things she said to me wasn’t helpful. That was a massive step for me because I had never said anything to her about how what she was saying I found unhelpful before.
I started seeing a new psychiatrist whom I have been seeing every fortnight. She has been very helpful medication wise but there have been a few things she has said in our sessions that I found to be very insensitive and hurtful. I tried talking to her about how I found those things she said insensitive and hurtful and I was semi-able to say what I wanted to say but I also found myself lying to her about something because I felt like she would never hear me properly…
She started me on a new medication to help me sleep and with a few dosage changes we have found a dosage that usually gets me to sleep and keeps me asleep. It doesn’t work all the time but I don’t expect it to work every single time. She also started me on a new medication to try to help me with my chronic fatigue and I guess it works the tiniest bit. It takes a very thin layer off of my fatigue so that I’m able to get dressed and move off the couch but it hasn’t helped with my brain fog or given me energy. I don’t know if a higher dosage would help or not but for now we’ll keep it at what it is. She also gave me a new medication for my anxiety and panic attacks and that definitely helps but I try not to take it unless I really have to and can’t handle my anxiety or if I have to go somewhere like to a medical appointment. I also take it if I’m having a really hard day with my depression and grief.¬†

Yes my grief is still here and active. I still miss Chase every single day and struggle with him not being here. I don’t cry as much as I used to and I don’t know if that’s because I’ve gotten better at suppressing my overwhelming grief or if I’ve become more detached from my feelings but there are still days like I mentioned before where the grief is so bad that I can’t handle it and I have to take something to help me get through the day. ¬†
2017 marked 4 years since Chase’s death and it also would’ve been his 9th birthday if he was still alive.
A few people said this year that it was time that I moved on from Chase dying and that it had been long enough and to them, four years might sound like a long time but to me, it feels like it happened last week or a year ago. People also said that Chase dying was the cause of all my health conditions and to that, I say no, it wasn’t. It is so unfair and disgusting that they are happy to blame my baby brother’s death for the reason I’m sick. I had stomach problems since I was a BABY! NOT only after Chase died. Sure, the emotional stress put a strain on my body and therefore triggered or flared my stomach problems up but him dying didn’t cause them. Same with my anxiety and depression. I was already starting to get anxiety from school and my stepfather before Chase died and I was also starting to show signs of depression before Chase died.
I will continue to grieve my brother because I have that right and if his death and my grief stops me from doing certain things in life then that’s fine too. What I went through was so incredibly horrific and I have the right to take as much time as I need to heal and process what happened. My brother dying, my right to take as long as I need to grieve.

Since we’re talking about siblings, my sister Holly comes to mind as one of that bad things of 2017. She continued to hate on my Mum and I for saying that we didn’t like her boyfriend and therefore pushed us out of her life. I decided to write her a letter which she read but never responded to and then in April after not hearing from her for months she randomly messaged me one day asking for my details for her will. I messaged her back and said that I hadn’t heard from her for months and then all of a sudden she wanted my details for her will and that that isn’t ok. She then decided to tell me (all through message) that she had a brain tumour not that I would care! Yes, you read the right folks. My sister told me over message that she had a brain tumour and then added that I wouldn’t care.
(Side note: For those of you who are reading ¬†this blog post and who haven’t read my other posts about my brother Chase, he died from a rare, incurable and inoperable brain tumour at the age of 5 and from the day he got diagnosed to the day he died it was 12 weeks.)
So of course I rang her straight away and asked her what was going on and what did she mean when she told me that she had a brain tumour and she told me that she had a MRI done and they found a brain tumour. Well, that brain tumour ended up being a pretty common pineal cyst, NOT a brain tumour.
The fact that she said and I quote ” I have a brain tumour not that you’d care” hurt me so ¬†much. The next day I rang her and said to her that if she wanted to talk about the letter that I sent that I would be happy to talk to her but I also said that if she wants that to happen that she has to contact me and that I wouldn’t chase her around trying to get her to talk to me. Well, I never heard from her again so I guess she didn’t miss me that much and doesn’t want to have me in her life…¬†
I am so hurt that she basically disowned me but I have to accept that I guess. Holly will never be able to be the sister that I want and we’ll never have the relationship that I want to have. And before you say “But you’re family” or “Maybe in a few years you two will reconnect”, Holly and I have always had a very strained relationship and the fact that she dislikes my Mum so strongly I can’t handle. I don’t want to have someone who can feel so negatively about the ONE person in my life who has been there for me through everything and who is my best friend. Anyway, that’s another story for another day.¬†

So basically 2017 was a big ball of sh*t! It was meant to be my year for everything to change from 2016 but that didn’t happen. I really need 2018 to be different; I don’t know if I’ll be able to survive another year like 2017 and have nothing change. I will take all the steps that I can towards things changing this year but I also think people in my life need to remember that I’m not just fighting mental health issues OR physical health issues, I’m fighting BOTH at once. It’s not one or the other for me.¬†

I hope 2018 will be the year that things change for the better for you people reading this and that you get everything you want. I also hope that 2017 wasn’t too bad for you.

Keep safe,
Maddy xoxo  

 

Twitter: @DMWAAG
Email: depressedmesswithanxietyandgrief@outlook.com
Featured Image: http://imperial-properties.com/en/2017-happenings

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Death, Depression, Family, Grief, Siblings

How Many Siblings Do You Have?

(Just for reference I have a younger brother who is 11 years old and an older sister who is 21 years old )

How many siblings do you have? It’s a simple question that surprisingly comes up quite a lot in conversation. Whether you’re on a date getting to know someone, in general chit chat/small talk or at a doctors appointment, people for some reason feel the need to ask you about your siblings and if you have any and how many. I don’t know why they can’t stick to talking about the weather or other neutral topics…¬†I do understand that it’s what we’re grown up to ask and that it’s polite but maybe we need to start teaching people to think that maybe the person they’re about to ask has lost a sibling and that asking that simple question might not be so simple for them. ¬†

It’s a question that a lot of people don’t have a problem answering but to us bereaved siblings it’s a reminder of everything that we don’t have, have lost and of the brother or sister who has died. As soon as you hear those words it’s like a punch to the gut and it feels like your heart is being ripped out of your chest; well that’s what it feels like for me anyway.

Whenever someone asks me that question I always freeze and start to stutter out words that make no sense or look at them and start to cry because I never know what to say.
What do I say?
Here are my options that I have come up with:

  • That I have 3 other siblings
  • That I have 2 other siblings and one died
  • That I have 2 other siblings and leave Chase out of it completely and don’t mention him at all

Is it disrespectful to Chase if I don’t mention him at all though? But¬†if I say that I do have two other siblings and that one died then they’re probably going to want to ask me about it and how he died. The problem with that is that I then don’t know how much or how little to tell them and what I should and shouldn’t say about the whole thing.¬†When people ask me how many siblings I have they sometimes also want¬†to know how old they are and if they’re younger or older than me. ¬†Chase died when he was 5 so if I do decide to include Chase in my siblings when answering the question do I say the age he was when he died or the age that he would be now if he was still alive? He would be 9 if he was still alive today…

So many sub-questions for what would seem like an uncomplicated and easy question to start with and to answer…¬†

Losing a sibling is such a different experience to losing a child, it’s a different relationship that no one will ever understand except you and your sibling.
I feel like I not only lost my brother, but I also lost my best friend and partner in crime when Chase died and reliving everything that happened if someone asked me how many siblings I have and I include Chase it will just be too painful to have to do that and to try to keep myself together.¬†¬†It’s too painful to think about let alone say out loud.

I wish there was a handbook that could tell me how to grieve and what I’ll feel and what to say in situations where I don’t know what to say. My Mum says that it’s a good way of remembering your sibling and that might be so, but for me, it just makes me really sad and brings up all the grief feelings to the surface that I try to bury down so I’m not consumed by them everyday.¬†

It’s incredibly tricky and confusing¬†to know what the right answer is and I just don’t know what to say…¬†Maybe one day I will figure it out but at the moment whenever I get asked I’ll probably still freeze and start to stutter out words that don’t make sense. ¬†

If any of you reading this post have lost a sibling and get asked that question what do you say and what’s your answer to the person asking you? Let me know in the comments.¬†

Keep safe,
Maddy xoxo 

Feel free to follow me on twitter. It’s a bit all over the place but hey, that’s me! ūüėČ

 

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Chronic health condition, Depression, Doctors, Exhausted, Family, Grief, misunderstood, Mother and daughter, Tired

Behind The Mask

Behind my mask I am struggling everyday and I am trying to be the strongest that I can be.

A lot of doctors have no idea about mental health illnesses like depression and anxiety. It astounds me when a medical professional (especially if they’re in the mental health field) says or does something completely wrong knowing that you are mentally ill.¬†

I had an appointment with my gastroenterologist the other month and it was the day after Chase’s birthday or death, I can’t quite remember… Anyway so I was obviously more upset than normal and crying more, so I went into his office and had my appointment and told him how I’m really struggling at the moment and he only said ‘Well of course you are’, yeah that’s fine whatever, but when I went back two months later, I had been having a really hard time and feeling suicidal the week before the appointment so I went in and he asked me how I was going and I said ‘not good at all actually’ and he just said ‘well you look like you’re doing a lot better which is good’ and mum was with me this time and she spoke up and said ‘no, she really hasn’t been doing well and she’s really struggling’. Bob (my gastroenterologist) cut her off and argued with mum saying that I look like I am doing better and then I spoke up and said ‘just because I’m not crying doesn’t mean I’m feeling any better.’ Bob just stayed quiet and ignored that and went on to ask me about how my gastro symptoms are going. I felt so belittled by Bob and like he didn’t understand mental illnesses at all. It was a really horrible moment.

In the past a similar thing has happened and it was even harder because it was in a special mental health school. The teachers’ always thought that because I had smiled or laughed that day I was automatically not depressed anymore and they would treat me differently. My case worker saw that and understood how I was feeling, so quite a few times he had to remind those teachers that just because I smiled or laughed doesn’t mean I’m all better now. Sometimes I feel very ¬†misunderstood by doctors and it’s really hard to understand because they’re medical professionals and you would expect them to have at least done a psych rotation at medical school right?¬†

The other day mum was at the doctor and a couple of days before mum’s appointment I saw that doctor. Mum has her appointment and the doctor tells mum that I’m doing quite well and I look like I’m doing good; or something like that.¬†
Just because I have clean clothes on and I brushed my hair doesn’t mean that I’m not struggling every day. What do doctors expect a depressed person to look like? Do us depressed people just have to walk around in our pyjamas all day with knotted hair and not having washed for a month? Or do us depressed people not get out of bed ever? But then how are we meant to go to the medical professionals to get help? And if we stay in our pyjamas all day not caring about self hygiene or stay in bed all the time and we do go to the medical professionals for help, they say that we’re not helping ourselves and making ourselves worse by not getting dressed and brushing our hair! So really, it seems that we can’t win.¬†

A month ago I got into a really bad depressive slump and I was very suicidal and nearly ended up in the pysch hospital again. My mum called my psychologist because she was worried about me and didn’t know what to do and my psychologists answer was to take me out to lunch! Because when I’m feeling like killing myslef because I see no reason to live, the only thing I want to do is go to a busy place for lunch and hang around outside! No, what I actually want to do is take my medication that knocks me out and go to bed until I feel like I’m not going to harm myself. When my psychologist said that, I felt so… I don’t even know what emotion I felt! I honestly couldn’t believe she had said that.

You kind of lose faith in the medical system when people who are meant to help you say such unhelpful and ignorant stuff.  

¬†I feel like I have gotten very good at hiding how depressed and hopeless I am. I’ve had to implement my poker face since Chase died. No one I have ever met has seen through it and seen how much I am struggling. It’s so tiring being so strong all the time and keeping my sh*t together. I just want to stay in bed all day where it’s warm and I don’t have to worry about anything outside my bedroom. I don’t know who I am outside of being majorly depressed, anxious and chronically ill.
I go to my appointments and I get dressed and I have showers and brush my hair and brush my teeth and wash my face, I do all this stuff and just because I do it, it doesn’t mean that I’m suddenly not depressed and mentally stable.¬†

I am broken and I will never be whole again. There will always be a part of me missing that Chase took when he died. I will always be grieving and some days it will be too hard and I WILL stay in bed all day and cry.
Being strong is good but breaking down is also good. I can’t always be strong.

I don’t know what the doctors need to see that I am struggling. My anxiety and depression are overwhelming a lot of the time but I keep going because it’s the only choice I have. I’m so sick of doctors and their small minded ideas of mental illnesses.
If doctors want to see me when I’m at my lowest then come on over to my house and watch me cry myself to sleep and cry so hard I start hyperventilation or I cry so hard that I feel like I’m going to throw up or see the look on my face when I think about everything I struggle with every day or the nosies I make because I’m so sad and I just want to die. If they want to see that to prove to them that I am in fact not doing well and depressed then they can.
I keep myself together so I can help mum because she can’t lose another child. I am struggling and I just want people to see that and acknowledge that and not assume that because I’m smiling or laughing I’m not dying inside. All I want is to be understood.

Behind my mask I am struggling everyday and I am trying to be the strongest that I can be.   

Keep safe,
Maddy xoxo 

Feel free to follow me on twitter!

 

 

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