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!