I am not ashamed to say I have PTSD, I've had varying degrees of it my whole life cause I have basically been brought up in hospitals but a year a go I went through my most serious traumatic event.
It has been nearly a year since I was admitted into the hospital after my tube had fallen out. This should have been easy to fix and difficult to mess up however it appears I was unlucky. For whatever reason policies weren't followed, appointments were not made and treatments did not happen. A mixture of all these issues meant I was left without any tube in my tube tract, that consequently led to my tract beginning to close. That was the start of my nightmare. I've had so many endoscopies and tube changes throughout my life, I was absolutely fine with endoscopies and tube changes. I say was because now I'm petrified of them, even the thought of them makes me tearful. So my tract was closing up and there was nothing in the hole, I went into hospital with a 14F [French, it's a weird tube size measure] sized hole. Anyway this began to close so by the time I got to endoscopy my hole was probably a 8-9F size. The doctor however thought an 18F tube would be appropriate.... One of the effects of being such a frequent hospital user who has many procedures and conditions is that sedation never works properly. Now when I say sedation doesn't work properly I mean I need about 3-4 times the normal amount to be knocked out for a small amount of time. So I tell this doctor about my sedation issues and they act like they've listened... I woke up half way through the procedure screaming. My stomach felt like it was being ripped open, it was in fact the doctor cutting my stomach to get the large tube in. I can't even describe the pain I experienced cause I've never been in so much pain. I was screaming so loud and I started trying to move the doctors hands away from my body. I wanted them to stop, I wanted the whole experience to stop. But it wouldn't. Most doctors would give more sedation until I was out of it again, they would offer some sort of pain relief. Unfortunately this doctor was not most doctors and they didn't sedate me further. Instead they got the nurses and assistances to hold my arms and legs under the table. Then as they became more frustrated the tube wouldn't fit the harder they pushed it in. I blacked out. I woke up on the ward in so much pain. It then turned out that the hole was now too big for the tube and left me with acid pouring out of my stomach. This caused acid burns to my skin which meant I needed another tube placed. This time I was knocked out with large doses of sedation and diazepam. I then spent 3 months in hospital, trapped on a ward who wasn't listening to my concerns and fears. I was in so much pain which was never fully controlled. Due to the damage done with the first tube my intestines were left in shock and stopped working. I didn't poop in nearly 3 months..... But instead of identifying the issues and working to improve the situation, I was blamed. I was clearly an opiate addict who was addicted to anti-sickness medication. I asked for opiates because I was in so much pain and I asked for anti-sickness because I feel sick all the time. I only wanted to be comfortable. After going without feed for weeks I was put on TPN which I am still on now. You see many things happened in those 3 months, if I listed and explained everything we would be here for days! They've had a profound effect on my mental health and general life. I feel like I left a large part of me in that endoscopy suite, a piece I haven't yet been able to get back yet. I feel cheated, last January I was doing so well I'd even started attending the gym regularly. When I look back to the person I was before the tube change I hardly recognise her. I know it's not going to be easy and it wont be quick but I'll get back to the person I was before. I need to learn to be kinder to myself and accept that the healing process will take time. But I have time and I have a good support network. I also need to remember I will have sh*t days, and there will be days where giving up seems like the best thing to do but when that happens I just need someone to tell me to keep going......
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Anyone who knows me will know that this year has been truly hellish. Literally everything that could go wrong has gone wrong and I feel like I've spent more time in NHS buildings than I have in my own home.
I didn't think it was possible to feel so broken mentally and physically. When I think back on this year and everything I've experienced, felt and endured I not only well up by I feel so angry with everything and everyone. I simply feel let down. I have normally been fairly good at coping with my medical conditions, I'd even go as far as to say I've been quite resilient. But this year I just haven't. I've felt weak, tired, emotional, scared, sub human, broken, neglected and vulnerable. I've felt like the world is against me and honestly I didn't realise a person could ever feel so broken. Anger is a dangerous emotion as so many people keep telling me. My mental health team believe I'm a very angry young woman who pushes people away. But you see I think there is so much to be angry about. Im angry because..........
The problem is the anger it tears you apart and the only one its hurting is me. You see my doctors go home at the end of the day and continue with their lives, I wouldn't even cross their minds however I spend so many hours thinking about the what ifs and the maybes. I torture myself daily thinking about what I did to deserve any of the treatment I had between January and March/April. What if my tube didn't fall out or what if another doctor changed my feeding tube. The thing is I can't change any of it and I need to accept this new life. But I can't With all these issues comes a lot of time spent in hospitals, doctors surgeries and mental health centres. The problem is I have had to many negative experiences in these places and I am now scared of them. I will literally do anything to avoid a hospital admission, even if that means going against doctors advice. I don't think I want to accept how much has changed or how bad my body is now. I'm not afraid to admit my mental health has taken the biggest beating of it life in the past year. Every morning I wake up and I either hold back tears or I just cry, I wake up and I remember that this is my reality. This is my life and I am still living it. It's like a punch in the face, an ever more horrible feeling that this nightmare is real. It's hard enough to battle all the physical symptoms of my conditions without my mental health joining in. The thing is many therapists, support workers and psychiatrists don't know what to do. They don't fully understand my physical conditions and exactly how much time I spend in hospitals. But mostly they are not magicians and they can't do anything about my physical conditions I'm hoping 2018 is going to be better and kinder but I'm not expecting anything as I've learnt you can't be disappointed if you expect nothing! I'm hoping a new consultant/surgeon may be able to offer help and I hope I can start working through my PTSD but I know it's going to be a slow process. It's going to be difficult but I want 2018 to be a year which I can sort my shit out...... Happy Christmas and Have A Wonderful Healthy New Year! Just when I thought I was getting the treatment I needed to help me and keep me stable, I have been left. It appears I have to go back to living the way I did a few years ago........
I think the NHS is amazing. I owe the men and women working with the NHS my life. Sadly though like so many things in life there is always those people you don't want to come across or interact with. My consultant, lets call them Dr D has been my consultant since I was 16/17 and has made so many important decisions regarding my health. Sadly I no longer trust them, like them or feel safe and confident with them. The problem with Dr D is that they are too confident yet lack the knowledge needing to back such confidence up. They always want to think they know everything but most importantly, they want you to know they know more about you and your body than you will ever do. You see I live with my body 24/7 would you believe, this means I've got quite good at knowing my body. I know if something feels right or wrong, I know if a treatment is helping or is a waste of time and I most definitely know I MUST be included in the care of MY body. The second problem is one of the more frustrating aspects of Dr D's "Technique" as they are all over the place and confusing. It's like they throw out possible treatment and just wait until you say yes to one of them. They also like to make plans or suggestions but forget they even said anything! They seem to change something every time i see them just for the sake of changing something. One minute they like a drug and the next they don't. But I'm just left here in the middle of the shitstorm without an umbrella. This is my life so please please please respect it and include me in it! So then finally the reason I am so angry. My consultant has stopped my TPN but has not restarted Jej feeding and tried to cut a lot of my drugs even the ones they are not allowed to touch. You see my consultant has made the decision I can eat again, not only can I eat again but apparently they don't think I'll need the tube anymore......... They cancelled the PN which means they have also cancelled my IV anti reflux medication. Also they want to cut my anti sickness medication [but I "apparently" agreed to this] Needless to say I'm a little bit of a mess at the moment. I have been trying to eat as "normal" but I just can't do it. When I eat I get severe pain,I become very bloated, I reflux, I feel nauseous and I vomit. Then throughout the day I feel sick and can feel the reflux. I can't believe after all my struggles and problems over the last 2-3 years the same person who fitted the tube is now saying I don't need it. But one of the reasons they gave me as to why I needed to get rid of the tube was because it's ugly....... This makes me sick, that a consultant can just make comments like that about my body and the thing that has kept me stable for so long. I am the one who makes the decision as to wether my tube is ugly or not. Thanks to all this I've been a nightmare to live with. For the past week I have been on holiday in Northumbria with my family and Matt [My partner] Thanks to the timing of my consultants changes it meant I was on holiday feeling awful. When I feel upset, worried, angry or unwell I become depressed, irritable and grumpy. This means when I need peoples support most I am pushing them away with my behaviour. I can't tell you how scared and worried I am about my future at the moment. I can just see a re run of pre tube life. Why must I damage my body or starve again just to prove a point..... Hello to anyone out there who is still checking up to see if I'm alive. For the past month or two I've been in hospital battling sepsis. This year I've only had about 3-4 weeks at home scattered over the months. I have now been home 1-2 weeks and I'm settling back into "normal" life.
So much has changed this year and for anybody that doesn't know I am now on Total Parenteral Nutrition [TPN]. This means all my feed and some medications have to go straight into my veins. After my long stay in hospital at the beginning of the year a rather violent tube change sent my gut into intestinal failure. I have now been fully trained to set up my own feeds which means I'm no longer dependant on nurses. But sadly TPN has left me open to risks such as sepsis and of course this meant I had to have it. One PICC line and my port were the sources of my sepsis. The first source of sepsis was my PICC line so when it was removed and replaced everyone thought the sepsis was gone. Sadly the port sepsis was left unnoticed, I was discharged and after 3 days without antibiotics the sepsis came back twice as bad. The second bout of sepsis was more aggressive. I was trying to ignore my symptoms as the first lot of sepsis was scary and I was left feeling very unsafe and unstable. Anyway I was in the cinema when the symptoms got too much, by the time I reached hospital my temperature was 40c and my heart rate was 160-180bpm. The intensive care doctor had to come and assess me, luckily I avoided it...just. I have been left with post traumatic stress after this hospital stay. Im now very cautious of my lines and prefer my mum to set up my feed as I'm scared I'll do something wrong and get sepsis again. Even the thought of sepsis makes me want to cry. I'm also getting very anxious of the thought of another hospital stay as I don't think I could bare to be away from home again. Ive been home a week and a half now and I'm starting to do things like go into town but the littlest amount of exercise wipes me out. I'm left feeling upset, angry, powerless and defeated. But most of all I feel like a useless burden. I have been truly broken this week. I am not a fighter. I am not a warrior. I am not an inspiration.
I am a very scared & very lonely little girl in a world which has become all too overwhelming. I always thought I had hospitals, doctors, nurses & my conditions sussed & controlled until this week.. no amount of dark humour or positive thinking is going to change my mind. I have cut myself off from pretty much everyone I know, love or trust because of this week. Because I can't bare to relive the day I've just had all over again. I now scream when certain doctors or nurses walk through the door because I am scared of them. Today alone Ive lost 2 tubes & had 3 tubes placed with no pain relief or sedation. Ive forgotten what sleep is now as I've not done it in over a week. This week is meant to be feeding tube awareness week but now sadly to me it will always be the week I lost my trust & belief in the people who were meant to be keeping me safe. Well you'd think I'd be use to assessments & appointments after all these years, however there is one type of appointment I am never prepared for. Mental health appointments & assessments. You see unlike medical appointments there is never a certain outcome. Mental health appointments are unpredictable & often disappointing, as many people are aware the NHS no longer have enough funding for an adequate mental health service.
Chronic illness often comes with a fun freebie in the form of mental health conditions. Sadly chronic illness is often isolating, painful & all consuming, this means depression normally follows in some shape or form & often at different levels. But it's always there. Even if a chronically ill person seems they are coping well its often just a front, another way of coping. Pretend everything is okay, pretend you've got it all worked out & pretend you are coping well. But I am not ashamed to say that I have a mental health issue. Anyway it's taken me a long long time to finally receive the help I've so desperately wanted. I've had to jump through many hoops, wait on lists, have various over the phone assessments & constant appointments with the GP. My hospital consultants have also realised I need help, so managed to get the hospital psych team to write a letter of support for me. So after months of waiting i've finally got an...........assessment.... Thats right an assessment, I've effectively got my foot in the door & this meeting will either open the door further or have the doorman chuck me to the kerb. So you see there is so much pinned on this assessment, this is the future either with or without support. The woman I'm meeting will listen to everything I have to say & then she gets to judge. Am I consider bad enough in her eyes to receive help or am I not bad enough & told to return to my GP. You see I believe that there should be a specialist service or team designed to help chronically ill people with their mental health. Sadly this will probably never happen..there isn't even enough money for basic mental health support, let alone a specialist group! But thats why I'm worried, I'm scared I won't appear depressed enough, I'll put on too much of a brave face, I'll sugar coat my words like I do for so many but most of all I'm afraid I won't say the right things in the time I have. Never before has an hour been more important. I've already got a chest infection which have required lots of IV medications to treat. What if brain fog descends? What if I forget to tell them the things they need to hear? What if I put my front on? What if the woman thinks I'm coping just fine? I could go on.... But I can't. I must stay calm & collected, I must show her that my life is most certainly not okay at the moment. I must accept I need & want help. I need to show her that there is some big issues in my life. But most of all I must just show her myself....... Im only 20, I should be out partying, meeting up with friends, starting work or going to uni. But I'm not. I'm stuck mostly at home alone. There are too many days where I just stay in bed. You see being chronically ill is an inconvenient & lonely affair. I found that was the case especially after my feeding tube was fitted, people just started disappearing.
It hurts me a lot to see my friends moving on with their lives and going to university. I will admit I'm jealous of their lives, but no matter what I will always be happy that my friends have these opportunities. To them they wouldn't think anything of it, its just life. But to me it feels like a world away. Even when they come back home they seem to be too busy to meet or I'm too unwell or tired to go out. However I believe that it's not always their fault......... I believe that people become scared, worried or anxious when they see their friends with chronic conditions. They feel completely helpless, all they can do is watch you decline. That must be so difficult, to see your friend hurting & being unable to do anything about it... They then see you struggling so don't feel they can offload their issues as they don't want to make things worse for you. That means they stop confiding in you because they don't want to be a further worry in your life. They then unhelpfully don't want to ask questions or cause issue. They don't want to bring up topics which they think will be a problem, they stop asking how you are & then they stop inviting you out. Apparently having a feeding tube means that people believe I can no longer be anywhere near food. Then you get to a point where you barely speak, then they use distance. They feel like they are not good enough, not supportive enough & cant help you enough. They get scared so they run. This past year has been difficult, full of challenges & completely life changing. I have had to fight so hard, I feel like I'm constantly struggling to keep my head above water but I have found support in my online community. I owe so much to three people particularly, these people have saved me, cheered me up & supported me everyday. They have unconditional love & support for me. They are all chronically ill themselves, this means they are fully aware how I feel & how challenging life can be. Without them I don't know where I'd be........ I then have my online support groups that help with various different things. I am part of support groups for people with feeding tubes, people with chronic illness, people who suffer from gastroparesis & many more....... Chronic illness can destroy life in so many ways, but I can't let it destroy my life.....Every individual is plodding through life at their own speed. Today is not my day but maybe tomorrow will be. As most of you have probably realised I am very honest & open about my conditions both physical & mental. But there are still parts of my condition which I can only share with Matt my partner & my family. You see these parts of my conditions show me at most vulnerable & my worst side.
You see I try so hard to be strong, postive & get on with life, this is not always possible. There are days where I can't be strong all day or something happens to tip me over the edge of sanity. These sides of me can come on suddenly & sometimes very unexpectedly, I have no control over my feelings at times. However there are also times where I have been strong for everyone & I simply can't keep being strong. It's at times like these my walls come down & I present my vulnerable side. Sadly my feelings can be confused by my family & Matt, they can also cause problems. But I believe if I share with you exactly how I feel, I may help people understand. Super Explosive Anger & Pissed Offness There are many times when both Matt & my family would say I was angry or overally frustrated for no apparent reason. It upsets them, but it's also so upsetting for me. You see by the point I am showing anger & frustration I have spent hours or days trying to keep my feelings inside. By the time I'm visably angry or upset I am at boiling point. From the eyes of my family or Matt this could mean that stubbing my toe suddenly provokes an over reaction of anger. I always forget that no matter how close me & Matt are he will never be able to read my mind. You see I'm not trying to upset or hurt anyone it's just that everything becomes overwhelming & the stubbed toe is the last little thing to push me over the edge. When I'm at my angriest I'm at my most vulnerable, my weakest & I need support. Sadly anger is a really unattractive mood which doesnt really trigger the caring side of most people. I would like to take this moment to apologize, I really don't mean to get angry, Alot of the time I don't know what is causing my anger, this means it looks like a crazy reaction to something tiny. I just can't cope sometimes, so I explode. Crying I try really hard not to cry in public or in front of people, sadly I'm not always able to hide my tears. I only tend to cry if I'm in real pain, struggling to cope or feeling guilty. Matt has seen me cry...more times than I'd like to admit. I find that I can trust Matt & express exactly how I'm feeling even though I know it can upset him. I try really hard not to cry in pain as I know if upsets Matt & my family as sometimes there is little they can do to help me. There have been many times I have cried to myself as well, even when feeling rubbish I want to protect the ones I love most. Sometimes I'm crying not because I'm in pain but I just feel hopeless, I'm sick of being sick! Worrying, Feeling Guilty & Becoming a Burden No matter what my family says I will always worry I am a burden & I will feel guilty that I need so much help. I will continue to worry that Matt is becoming tired of my constant illnesses & appointments. Then I will continue to worry that my friends, family & Matt no longer want to deal with all my issues. I am scared that the constant hospital appointments, peroids of illness & emergency admissions will become tiring & people will just give up on me. No matter how ill I am or how serious the situation is I will continually apologise to everyone who comes into contact with me. I'll apologise to first responders & paramedics for wasting their time or for them having to deal with me yet again. Il apoligise constantly to my mum during an admission as I feel so guilty for taking up her time, especially when she has work the next day. I am fully aware that I can't always help my conditions but I still feel like its my fault. Matt is such an important part of my life which means it's particularly difficult when I feel like im letting him down or becoming a burden to him. I want to be able to have a normal life with him & do things that a normal young couple would do. So when I end up at A&E in the early hours of the morning & I tell Matt he will drive all the way to meet me at hospital. He is such a big support & he cares a lot about me, he is always telling me he doesn't mind that I have a disfunctional body. But I know it's difficult & I know it's not what he imagined life would be like, so I worry....a lot. He is an amazing person & I wish that I could be a little more normal for him...... Well 2016 is over and I’d be lying if I said 2016 was a good year. For me it has probably been one of the worst years that I can remember. Yes of course there were postive moments but overall this year has been too difficult and depressing.
2016 saw me gain two new conditions to add to my already massive list! I have developed Addison’s Disease as well as chronic complex migraines. Addison’s was particularly worrying due to the crisis’s they can cause. It also meant I now need steroids everyday which has caused me to balloon in weight. As usual I’ve needed lots of hospital treatments and admissions. I had my port fitted for easier and more effective access for IV meds and blood tests because all my veins are now damaged and unuseable. This has been the first full year with my feeding tube. I’m learning to live with it but sometimes its really hard to manage both physically and mentally. I’ve needed quite a few tube changes this year which leaves me in pain for a few days after. Sadly my life in 2016 consisted of being at home(normally in bed) or at hospital for either an appointment or emergency treatment. I have become so isolated living in my world of hospital and home. Ive found it so difficult to cope whilst I watch people who use to be close to me drift away. I cant tell you how upsetting it is to see everyone living their lives, moving on, going to uni and being independent. I feel like I’m stuck frozen as the world carries on around me. I’ve spent most of the year trying to seek help for my mental health issues. Its taken me a whole year of waiting to finally get an appointment to someone who may help me. You see being chronically ill is difficult, tiring and draining. I am no longer confident in my own body. After nearly a year on various steroids I have put on a lot of weight quickly which means I am covered in very dark deep stretch marks. Chronic illness has robbed me of my self esteem. On a postive note (Finally!) I have been supported all the way by Matt my wonderful boyfriend and my small group of friends that I’ve met online. Although its been difficult, frustrating and at times upsetting but these guys have stood by me through everything. Matt has made sure I know his love for me is unconditional and he has tried so hard to make me see that I still look lovely. Well then we are now in 2017 and I’m not going to be starting with all that new year, new me crap. This year I have some simple ideas to making this year a bit better:
See another long pause in blog posts…. What can I say, life got in the way of living. I am sat writing this post on my way to yet another hospital appointment. It passes the time and keeps me busy I guess.
Chronic Illness is many different things to different people. To my doctors and consultants it is a set of long term symptoms and conditions which need managing. To my pharmacist it is a good source of income and a large prescription every month. To my GP it is the weekly catch up and the chasing of test results. To people who dont know me its nothing, in their eyes I am normal. But to my family chronic illness is so much more than a set of symptoms. Chronic illness is sitting by my bedside during yet another hospital admission. Its holding my hand and turning my head when a nurse tries and fails to take blood. Its seeing your teenage daughter unable to do things that other teenagers can do. Its the worrying and monitoring on Friday night when my chest begins to deteriorate yet again. Its listening to a doctor giving your daughter yet another diagnosis and smiling bravely. To my family chronic illness is just day to day life. Simple. To my boyfriend chronic illness is frustrating. It’s coming to sit with me in hospital when I’m admitted again. Its seeing your girlfriend in bed all day with no energy. Chronic illness is boring and stops us having fun. It’s that heartbroken feeling you get when you worry about my future. But chronic illness is also unconditional love. Its supporting me through my darkest days. Its laughing and sharing dark humour about my conditions. Its him pushing me to do the most I can even when I feel shit. Cause chronic illness to my boyfriend is me. To me though chronic illness is difficult. It is frustrating and depressing. Its waking up and not wanting to leave my bed as I feel like I havent really slept for 10 hours. Its constant hospital appointments and admissions. Its going to hospital so many times you consider the staff to be a second family. Its giving up when you feel you cant go on with such a shitty existence when you are having a bad week. It’s disapointment when I don’t progress as quickly as my friends. Its compromising, so many compromises. But its also appreciating each and every day I get. It’s finding amazing friends on online support groups. Its carrying on despite all the set backs. It is my chronically fabulous life. You see chronic illness isnt a set of symptoms is a completly different lifestyle. |
About MeI'm Kate. A chronically Ill person just trying to live life the best I can. Please join me on my journey! Don't be afraid to ask me things :) Archives
May 2017
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