Anxiety, Challenging, Chronic health condition, Chronic Pain, Death, Depression, Doctors, Exhausted, Family, Generalised Anxiety, Grief, Guilt, Menopause, rare disease, Siblings, Tired

Spending the anniversary of my brother’s death in hospital

It’s taken me a while to get this blog post up but I’m finally getting around to it. I was in hospital from the 30th of May to the 4th of June. 

My brother died at 12:12am on the 31st of May so in my eyes the 30th and 31st of May are both the death anniversary. 

I had been unwell for around 2 weeks before I went to hospital. The Mesenteric Panniculitis flared up after I weaned off the steroids I got put on in February when I was admitted to hospital. It got to the point where I hadn’t eaten or drank anything properly for two weeks and I was also in so much pain that I couldn’t move so I rang my gastroenterologist and he said to go to hospital straight away. Unfortunately that was on the 30th of May and my specialist didn’t want me to wait to go to hospital any longer. I got to the emergency room at 3pm and it took 7 hours to be seen by a doctor. The emergency room was full and there were no spare beds so they transferred me straight up to the Gastro Ward at midnight. I was awake at 12:12am and I was able to have a little cry but then the nurse came and I had to lock my grief down and answer all the admission questions. My mum stayed with me until I got a bed on the ward but she had to go home to get my dog and look after her. It felt horrendous to be in hospital on the same day that my brother died six years ago. I felt awful making mum sit with me in the emergency room for 7 hours and then have to go home by herself. I couldn’t do my usual ritual on his anniversary which is watch a super hero movie, light a candle, cry and go to the cemetery. I was in the hospital for five nights. I got out the day before the funeral anniversary so at least I didn’t have to spend that in hospital as well. 

My disease is a bloody b*tch of a thing. I spent 3 months tapering off the steroids just to have to go on them a month later. My gastroenterologist wanted to start Infliximab infusions to try and treat the MP (mesenteric Panniculitis) but my veins are so hard to find, small and deep that that treatment plan is no longer an option so I’m now going to start Humira injections so every two weeks I’ll have to inject myself while staying on the immune suppressants I’m on now. I won’t be finished with the steroids until the 18th of August. 

The steroids also bring back a lot of painful memories because my brother was on them before he died. 

I don’t even know how to feel about everything that’s happened in the past couple of weeks. The steroids, the hospital visit, the anniversary and more sh*t that I really don’t want to talk about is so much stress for me to handle that I feel like I’m going to scream and blow. 

I got my laparoscopy at the start of May to diagnose endometriosis. They found some so I got that cut out and also got botox injected into my pelvic floor to see if that will help with my pelvic floor dysfunction and pain. So far I haven’t noticed a difference in pain and I’m also finding it harder to go to the toilet and get a complete bowel action. I decided not to do my sixth and final menopause injection because it wasn’t making a difference anyway so now I’m just on the pill and I’ll see how long I can go before I start break through bleeding and need to have a period. I am not looking forward to my first period after the laparoscopy and being in menopause for 5 months even though I did bleed all of those 5 months. So basically menopause was a big flop. 

The fatigue struggle is real. Steroids cause such bad insomnia that I spend more time tossing and turning than I do sleeping so I haven’t slept properly in months and my chronic fatigue is also flared up from everything. I would love to have a good nights sleep.

Anxiety and depression are going strong still, not helped by the fact that steroids can affect your mood so I’m trying really hard to keep my head above water and to keep going. 

Don’t have much else to say.

Keep safe,
Maddy xoxo

 

Twitter: @ChronicMaddy
Instagram: @ChronicMaddy

 

Featured Image: https://www.besthealthmag.ca/best-you/health/tired-and-gaining-weight/

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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, 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)😉 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 C 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 C’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 C 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 C 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 C 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 C died and I was also starting to show signs of depression before C 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 H 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 C, 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. H 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”, H 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  

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 C out of it completely and don’t mention him at all

Is it disrespectful to C 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.  C died when he was 5 so if I do decide to include C 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 C died and reliving everything that happened if someone asked me how many siblings I have and I include C 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 

 

 

 

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Chronic health condition, Death, Depression, Exhausted, Family, Grief, Tired

I’m so tired of everything

 

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I’m so tired, not in the sense that I need more sleep, well I do need more sleep, but I’m talking about being tired mentally and emotionally.  I feel like I’m in quick sand just trying to keep my head above board and trying to live day by day. If I only had my depression and anxiety and grief to deal with I think I’d be ok but I have so many other things to have to deal with. It’s too much; especially for a seventeen year old.

I don’t understand why some people have such easy lives with nothing bad happening and then some people have to struggle to keep going and not give up. I really do feel like I got the short end of the stick and I’m just going to say it… It’s not fair, I deserve better! I know people who live their lives with nothing  bad happening and they just travel the world and have a big group of friends and then there are people like me who have a dead brother, generalised and social anxiety, a plethora of health conditions and a mountain load of grief weighing them down everyday. I feel as though I deserve something more and better than this. I wake up in the morning in pain and feel like I haven’t slept at all even though I could have slept for 12 hours I then shuffle my way down the hallway to start complaining to mum about how tired and sore I am and how I look 7 months pregnant today instead of my standard 5 months, I then have to take my medication which I take three times a day so I can eat without experiencing horrible stomach aches and nausea and then I spend my day doing what I can depending on how tired I feel and how much pain I’m in. Then when it comes time to go to bed I lay there for hours and hours and end up getting to sleep after 3am or sometimes I don’t get to sleep at all! Yay for me.

How am I meant to do a diploma and placement if I feel tired all day everyday? I’ve tried taking sleeping pills and they work for the first week but then they stop and when they do work the next day I wake up feeling like I have a massive chronic fatigue flare up. I really can’t win. 

I need a break, even if it’s just for a day I would really like a break from my life and everything that comes with that, but that’s not possible and that’s really sad because this is my life and I have to learn to accept it for what it is. Yes it’s pretty sh** at the moment but I’m really hoping that it starts to get better soon and something changes because I can’t go through life not enjoying anything and just going day by day. I need something more and to believe that I will travel the world and have friends and a social life and that I will be happy one day. I need to believe that because if I don’t then what’s the point of living? My only reason is mum and that’s enough but it would be nice to live for something more as well. 

Well It’s 4am and I’m catching up on Millionaire Matchmaker while I write this blog and I don’t see sleep in the near future so maybe I should have breakfast?! 😉

Love to you all,
Maddy xoxo

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Ps- I love Greys Anatomy 

 

 

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