Chronic illness and special events

I almost didn’t make it to my brothers wedding. In fact at one point I begged my parents to leave me at home. Social events are very difficult for me, both mentally and physically. But I managed to go, and I pushed myself more than I thought possible. I drank, I danced, I laughed and talked to new people. I managed to create a little video before I collapsed into bed and finally allowed myself to be horizontal.

https://youtu.be/1yePCvbW-ns

A letter to my parents and friends

It has taken me a lot to write this and there may be things in here that I have not previously told you. But I am trying to be more open with people without fear that they are going to leave me.

Although it took me a year longer than most of my friends I have managed to graduate from university. If you had told me this in 2014 when I had to quit University due to my mental and physical health, I would not have believed you. Not only did I think I would not graduate, I thought I would not even be alive.

Since I noticed signs of depression and anxiety at around 15, I have always clung on to education and hobbies as a way of keeping myself alive. My head would tell me, ‘once you’ve finished your GCSE’s, your A-Levels or even your Degree, then you can die’. Or ‘once you’ve done this show, or been to see this person, then you can die’. The thought of dieing a failure was too much for me to bare, so I thought if I had at least accomplished some degree of education then at least someone, somewhere would be proud of me. This is why I have to constantly plan things to do with my time, because if I don’t then I know it won’t be too long before my mind circles back to suicide. And bit by bit, I’m trying to build my life. I put things in place for me to cling onto, one after the other. I trick my head by planning things one after the other. My head will tell me, ‘okay, after this appointment, then you can kill yourself’. And i’ll have to go, ‘hang on, but what about going home next week’ to which my head replies, ‘ah yes, okay, well after that then’. And I try and keep this cycle going as long as I possibly can.

I cannot work due to my many health conditions which in turn makes it difficult to plan things as money is tight and benefits don’t take into account anything but the bare essentials. So I try to plan things, that are affordable and that my body will allow me to do. The things that are keeping me alive right now, are the plans I have in place, my family and my friends. Without these protective factors, I would not be here today.

Of course, there are times when these protective factors aren’t enough and your head wins. I’ve had to accept that this will happen, relapses and blips are bound to happen when i’ve been in a cycle of negative coping strategies for so long. And the worst part of my head winning, is not that I end up in hospital. It is having to tell my parents and my friends what i’ve done. This for me, is by far the worst thing. I used to keep it all a secret as I was so angry and so utterly ashamed of what I had done, and I feared being abandoned by those closest to me. Having to tell someone about what has happened involves the same emotions every time, shame, guilt, sadness, embarrassment, anger, self hatred, fear, anxiety and probably many more. Even now, those feelings go through my head. I get a lump in my throat as I type a text to my mum or my friends telling them what I have done. I get a pain in my head and in my throat as I type and once again and let them know that there has been an incident. They are so kind and so understanding and for once I wish someone would get angry and shout at me as I feel that that’s what I deserve. But they don’t. They don’t get angry, they don’t leave me. But no matter how many times they say they don’t hate me, they say they’re not angry, I always get a little feeling that tells me they’re lying. My parents and my friends are all such great people and I can’t help but feel like I’ve once again let them down when there has been an incident.

So I would like to say thank you to my parents and my friends, whom I do not thank enough, and will never be able to thank enough, for always being so kind, understanding, comforting, funny and just bloody great. I cannot promise that I won’t do anything as sometimes I do not have control over what I do, but I can promise that I will try my hardest to tell you and let you help me.

 

Theatre and Chronic Pain

Someone Should Start Laughing 

I am so very lucky to be in the position that I am right now. Through the help of social media I have been able to meet and spend time with an amazing group of courageous women. I would like to take this opportunity to thank Raquel Meseguer, the director and wonder woman who has made this project possible. Because of her, I am finally able to rehearse and perform in a space that is safe, accessible and inclusive. The rehearsal space is flexible enough for us to take part in all aspects of the project, no matter what our physical or mental state is. By adopting this way of rehearsing, we can join in from sitting, standing or lying down.  

I have always loved performing, anyone who knows me, will know this. However, since I’ve been diagnosed with a multitude of chronic illnesses, I have found the theatre world to quite alienating and not all that accessible to people like me. There have been many times over the past four years where I have had to listen to my body, and complete written assessments instead of practical ones, whilst at university studying Drama. I often find that get angry at myself for not being able to keep up with other people my age. I watch them perform and I get jealous. I know that I shouldn’t, but it is incredibly difficult to accept that sometimes I cannot do the things that I used to. I often get angry at my body for making me like this.

The trouble with the theatre world is that long rehearsals, lots of energy and frequent movement are needed to create a show or a performance. The trouble with chronic pain is that it is unpredictable, we often do not know how we will feel day to day, often we can only get out of the house every few days, and only for short amounts of time, being in constant pain makes you very tired, and the pain and fatigue often limit how you can move, therefore making life in the theatre world incredibly difficult for people with chronic pain. The theatre world needs more accessible projects and pioneers willing to create them. Theatre in England is frequently performed by able bodied actors, or actors with health problems who attempt to keep up.

The guilt of not being able to show up to a rehearsal is a huge problem that I face, my illnesses are unpredictable and therefore so am I. I feel like people will judge me poorly and think of me as unreliable, as I can often only let people know last minute whether I will be there or not. It is difficult to accept that I need to take days off in order to rest.

Someone Should Start Laughing is a project that I am so grateful to be part of. I am able to do what I love, without fear of judgment as the other performers face similar problems. Although our journey has been short, I feel like I have connected with these women on a much deeper level than anyone I’ve worked with before. I am honored to know them and to work alongside them as they are just incredible.

It is difficult to describe what this project has done for me as I simply cannot find the words. I am so inspired by the women in this project and I hope that I can work further with them in the future.

“The Unchartered Collective grew out of a small group in Bristol, UK. Out of our shared experiences of living with chronic illness, we develop projects like Someone Should Start Laughing (supported by Arts Council UK & Ferment) and The Resting Revolution.” – The Unchartered Collective 

Tickets are available from http://www.bristololdvic.org.uk/ferment-fortnight-july-2017.html

“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
Susan Sontag, Illness as Metaphor

What happens when the pain gets too much?

Fibromyalgia, Joint Hypermobility Syndrome and Chronic Fatigue Syndrome all cause some form of pain. However, for me, the worst of them is the pain I get from Fibromyalgia.

Most of the time when we are in pain we can take some paracetamol or ibuprofen and the pain dies down. Or if it is particularly bad, then we use opiates such as codeine or tramadol. But what happens when these painkillers do not get rid of the pain? When taking a handful of painkillers is basically like swallowing a handful of smarties. That’s what life with Fibromyalgia is like. I am in constant pain that is not relieved by traditional painkillers, and even the atypical medications prescribed barely touch the surface. I can’t count the amount of times i’ve been told to exercise or meditate instead of taking painkillers. As if these are the magic cure to the excruciating pain experienced by people with chronic illnesses. I cannot count the amount of times i’ve been told that this pain is all in my head and that no one could possibly be in this much pain all the time, or even that i’m too young to be in this much pain. This pain is not in my head, it is very, very real. I would not be asking for help if I didn’t think I needed it. I would not be asking for increasingly stronger painkillers if I had not tried everything in my power to avoid it.

I only go to A&E when I am absolutely desperate. When I have taken a concoction of medications that would knock most people out. It is very rare when in A&E to find a doctor that understands chronic pain. The trouble with emergency medicine is that they want to find out what is wrong and cure it. The trouble with me is, I already know what is wrong and there is no cure, I just need pain management. But A&E is an absolute last resort, when I’m sat in my room in so much pain that the thought of killing myself becomes ever more appealing as I cannot bare the pain anymore. But when I get to A&E no one knows what to do with me. I have a care plan in place that has been set by the Pain Clinic, in it it states that if I attend A&E I am to have IV Paracetamol and Morphine and to be treated in a kind and understanding manner. You might find is strange that my care plan says ‘to be treated in a kind and understanding manner’, however I have been treated so appalling by some staff that this statement is necessary. I’ve been called an attention seeker, a drug seeker and a manipulator. None of these are true. I do not want your attention, I just want you to help me. If I could get by without any drugs then of course I would. Just because I cry and say that I wish I was dead, does not mean that I am manipulative. I come to A&E when I have no other option, when I am desperate. If I had cancer and needed pain management I would not be turned away and called names. I would be helped in a kind and compassionate manner and would receive the relevant medications and treatment. Just because you cannot see my illness does not make it any less real. The other problem is that many doctors do not believe that Fibromyalgia is a real illness. These views tend to come from older doctors as when they trained, illnesses such as Fibromyalgia had not been discovered or were still very rare. These doctors are often under the understanding that Fibromyalgia is all in the patient’s head and that they need psychological help rather than medical intervention. Of course there are always exceptions to this, and I have found a few older doctors who are understanding and a few younger doctors who do not understand Fibromyalgia. All I ask is that when I turn up to A&E that I am treated with respect and kindness. That I am not labelled as a drug seeker, but am instead given the relevant pain medications and cared for like any other patient.

I am so very thankful for the NHS and all the understanding and kind doctors that I have seen. I dread to think where I would be without the help of the NHS. This post is not to negate the great work that these doctors do, it is simply to explain a side of the NHS that not many people see.

Until next time,

Louise xox

Chronic Illness – The journey to a diagnosis

It is very rare to find a doctor that understands, at least somewhat, about chronic pain. I am very lucky in the sense that I have finally found a GP that understands chronic pain and is willing to help me as much as they can. However, I have been in pain since I was 13, that is 9 years, and it took me 6 years to get the diagnoses of Fibromyalgia, Chronic Fatigue Syndrome and Joint Hypermobility Syndrome. I have had too many hospital stays to count, where all the tests done have come back completely normal. I was a medical mystery, no doctor knew what was wrong with me. It started with extreme fatigue and pain in the right side of my stomach, the area where the appendix is. On the road to getting diagnosed I have had two operations, one to remove my appendix despite not having an appendicitis and another exploratory surgery. Both of these surgeries found nothing wrong, and nothing that could be causing my pain. After numerous hospital stays and many suicide attempts due to the pain, I started my own research to try and find out what was wrong with me. Now, I know doctor Google is sometimes the enemy, but in my case it saved my life. When on the NHS website looking up my symptoms I found the condition Fibromyalgia, I looked through the list of Symptoms and I suffered from every single one. It was like someone was in my body explaining all my symptoms. I made a GP appointment and reluctantly told them about my doctor google search and said that I think I might have Fibromyalgia. My GPs response? ‘Oh, I didn’t even think about that’. I was then referred to both the pain clinic and Rheumatology. It tooks me months to get an appointment for Rheumatology, but eventually I got a letter inviting me for an appointment at the Royal National Hospital for Rheumatic Diseases in Bath. I was diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Joint Hypermobility Syndrome. I don’t think I have ever been so relieved in all my life. It is weird to actually be happy to be diagnosed with three different illnesses. But after suffering from pain since I was 13 it was a huge relief to find out what was wrong with me and that this pain was not in my head. Finally someone believed me. Someone understood. However, not all doctors understand Fibromyalgia, and many state that it is in the patient’s head. This is not true. My pain is very real.

Although I am relieved that I now know what is wrong, it seems when you get diagnosed with one Chronic Illness, a few more come along with it.

Until next time,

Louise xox

 

Introduction

Hey,

So, I’ve decided to start a blog about my journey through chronic and mental illnesses. I suppose I’m doing this for a number for a reasons; to raise awareness of chronic illnesses and mental illnesses, to vent my frustrations and to stop me for getting bored in my year of ‘rest’.

What is a year of rest? Well, I’ve been in education since I was four, that’s 18 years. Now that I have finished my degree I really need time to look after myself, which is so important, especially with the conditions I have. I have ignored my health for long enough and I really need some time to deal with my diagnoses and learn better ways of dealing with them.

I really do not like talking about my illnesses, I don’t want people to think I am attention seeking and looking for sympathy or even pity. I am not. This is my way of dealing with it, and if I happen to raise awareness at the same time then even better. I constantly feel guilty about being ill as it not only impacts my life, but the life of my friends and family as well. I feel guilty as I am not able to do the things I was able to do before I got ill and as much as I don’t want to use my illness as an excuse, it is the reason why I’m not able to do things. I often minimise my symptoms and rarely tell others exactly how bad I feel. I don’t want your sympathy and I certainly don’t want your pity, I would just like you to understand. I often feel that if I tell people exactly how bad my pain is, or how bad my mental health is, then they will eventually drift away from me as they cannot deal with someone who is ill. It’s not like I am a normal type of ill either. My illnesses are invisible, it’s not like I have a broken leg where you can see what is wrong, or I am in a wheelchair so you can tell that I’m disabled. But just because my illnesses are invisible does not make them any less valid. I am so lucky to be surrounded by people who are so understanding of my conditions and I would like to thank them, as without them I would not be here today.

As much as I hate telling people what I am diagnosed with, I am going to write them on here. This is my space to vent and be honest and therefore I feel it is important to always tell the truth.

So, I am currently diagnosed with Anxiety, Depression, Borderline Personality Disorder, Chronic Fatigue Syndrome, Joint Hypermobility Syndrome and Fibromyalgia. I am also undergoing the process of being diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS for short.

I’ll write a little about each illness, however I’ll probably go into more detail on the individual illnesses in later posts.

Anxiety. So,  I am constantly anxious, you know like the feeling you get before an exam or before a job interview. I feel like that all the time, however, there is often no reason why I feel anxious. I have spikes in this anxiety where it gets worse and these are spikes are often set off by certain situations. Being in a crowded place, not being in control, talking about my feelings, talking on the phone, talking to new people, going out (whether this is simply to the shop or out for an event) and not being clean. There are many other things that cause heightened anxiety or even panic attacks, but it would take too long to list all of them.

Depression is a dark beast. It makes me want to kill myself or harm myself. It makes me stay in bed and isolate myself. It’s beyond sadness or the ‘blues’. It is a deep deep sadness, it’s almost beyond description. It can creep up on you or it can happen suddenly. It is unpredictable.

Borderline Personality Disorder is characterised by instability in moods, from high to low in a matter of minutes. These mood swings often result in impulsivity, suicidal tendencies, self harm and unstable relationships. People with BPD often suffer from chronic emptiness, anger, depression and anxiety and these can be both short and long lasting.

Chronic Fatigue Syndrome is more than just being tired. Imagine staying up for three days straight and then you might just come close to the level of exhaustion a person with CFS experiences. If left to sleep without an alarm I can sleep between 12 and 18 hours a night. Most of my life is spent sleeping. But however much you sleep, you are still exhausted when you wake up. CFS also causes joint and muscle pain, headaches, cognitive problems, flu like symptoms, nausea, dizziness and palpitations.

People who suffer from Joint Hypermobility Syndrome are very bendy and flexible and are often able to move their limbs into weird and odd positions that many others find impossible. People often refer to JHS as being double jointed, however this flexibility often causes problems, such as; joint pain and stiffness, clicking joints, joints that dislocate easily, fatigue, digestive problems, dizziness, fainting and thin or stretchy skin. JHS is a lot more than just being flexible.

And lastly, Fibromyalgia. Fibromyalgia is characterized by chronic widespread pain. Fibromyalgia means I am in constant pain, however this pain is not relieved by typical pain killers. Fibromyalgia also increases a person’s sensitivity to pain, meaning that even the slightest touch can be excruciating. The pain experienced can range from person to person. However, I can say that my Fibromyalgia can be more painful than a broken bone. It has often been reported that Fibromyalgia can be more painful than non-terminal cancer and is only a few points below childbirth (with training) – this information come from the McGill Pain Index. Other symptoms experienced by Fibromyalgia sufferers include, fatigue, muscle stiffness, insomnia, problems with mental processing, memory and concentration (known as Fibro-Fog), headaches and digestive problems.

I am in the process of being diagnosed with Postural Orthostatic Tachycardia Syndrome or POTS for short. This illness means that when I stand up from either lying or sitting, my blood pressure lowers and my pulse highers, resulting in dizziness, pre-syncope and syncope. Often when I stand up my whole vision goes black and I have to hold something to stop me falling over as I’m so dizzy. The autonomic nervous system does not work properly and often results in poor blood flow. Other symptoms include, palpitations, shaking, sweating, weakness, fatigue, headaches, poor sleep, chest pain, nausea and shortness of breath. It can also cause blood pooling, which often results in my legs looking red, purple or blue.

I take many medications for my illnesses, however most of these medications cause awful side effects that need other medications to control, so you end up in a vicious circle. I currently take, Fluoxetine, Quetiapine, Diazepam, Nortriptyline, Buprenorphine, Folic Acid, Chlorphenamine and Tramadol, Codeine and Paracetamol when I need them.

So yeah, sorry for the long intro and congrats if you read it all! If any of these symptoms sound familiar please don’t self diagnose, make a doctors appointment and they will be able to help you. Chronic Illnesses are notoriously difficult to diagnose, but do not let that stop you from getting help.

Until next time!

Louise xox