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.......
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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:
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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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