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

3 thoughts on “Introduction

  1. Hi,

    I’m sorry to just bump into here, but I read your post on the Mighty and felt like I could relate to a lot of the things you were saying. I’m very sorry that you have to go through all this, although that won’t help you. When I read about the tramadol I felt the need to ask if yiu think that has been working for you. I hope it does, but I’ve experienced that I get more side-effects from it and little pain relief (they think I might be allergic to it). But after a couple of years I found out that there are other opiods that give a better pain relief and less side effects. Maybe you already know this, but just on case I wanted to share this information with you because I wish I had known sooner and not many doctors are willing to talk about it honestly (in my experience they just want you to quit taking medicine). What I have now and gives me less side-effects (although still quite severe and of course still pain, but apparently you can almost unlimitedly add extra morfine) are oxycodon, the long and short working version (with nsaids and paracetamol). Maybe it’s something you haven’t been able to try yet, although it sounds as if you’ve tried many many things. If tramadol is the best option for you as regular painkiller then that’s totally fine. I hope you’ll need less ER visits and that they’ll treat you better.

    Liked by 1 person

    1. Hi, thanks so much for your comment it means a lot! I live in the UK, which is a little misleading as The Mighty have changed the words A&E to ER. I only take tramadol in a last ditch attempt before going to A&E, it doesn’t normally do much but sometimes it does help a little, even if it only helps me to sleep. The two drugs I have found most helpful are Nortriptyline which is a tricyclic antidepressant and buprenorphine which is an opiate and comes in a patch that you wear for 7 days. I’ve only ever heard of oxycodon from people from the US, I’m not sure what the British version of this is, or if it is available. I will definitely do some research on it though as it may be something that can help me. I’m sorry to hear that you also suffer from pain problems, I wish you all the best. Gentle hugs, Louise x.

      Liked by 1 person

      1. Hi,

        Ah I see, yeah they have the right to change things. I haven’t heard of nortriptyline and buprenorphine before, but I’ll check it out. I haven’t tried patches yet, so right now I only have oral pills/capsules. I don’t know about oxycodone rules in the UK (or the US), but I found this on wikipedia “In the United States, oxycodone is only approved for oral use, available as tablets and oral solutions. In the Netherlands and the United Kingdom, oxycodone is also approved for intravenous (IV) and intramuscular (IM) use”. So I think it is available in your country, but doctors are usually not very keen about prescribing pain meds/opioids. Most just don’t understand the amount of pain we’re in and indeed think we’re trying to get high.

        I wish you all the best as well 🙂

        Like

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