My name is Stacey and welcome to OCD and ME. This blog is about the struggles of living with Obsessive Compulsive Disorder, for both sufferers and their families.
Writing a blog and speaking publicly and is completely out of my comfort zone, however I believe some things are worth talking about.
Mental health is one of them.
Mental health and emotions is something that everyone has, yet how many of us actually take time to work on our mental well being ? People often say, talk to someone, that its okay to ask for help, but when you’re the one that Is struggling, well how many of us actively seek the help we need, I know I am guilty of this. There is still an enormous stigma surrounding mental health and as a result many don’t place mental health as a priority. More than ever people are being encouraged to share the stories and just talk, a problem shared is a problem halved, especially if cake and coffee’s involved!
I don’t just want to talk about general mental health, but something deeply personal to me. Obsessive Compulsive Disorder. This is something I have struggled with for what feels like most of my life, knowingly since I was fifteen, but my symptoms appeared as early as seven years old. It affects every part of my life, my relationships, physical health and daily living to a severe degree. I don’t write this lightly or for sympathy but hopefully to shine a light on a secretive and debilitating condition.
So I went to my doctor late last year for a monthly check up with my doctor and she asked me if I felt like trying therapy again would be something I was open to. I was hesitant to say the least. However after being on a steady downward trend for over a year and gradually being put on more medication I agreed to try. I was referred to steps to well being (even though i had to wait 2 months for the first phone call).
I had a phone call with an adviser who asked me lots of questions about my anxiety symptoms, how it affects my daily life, if I had signs of depression, felt suicidal (which I absolutely do not) and lots of other questions. I was then given treatment options based on my score.
The treatment options they offered me were group therapy or one to one cognitive behavioral therapy, but was advised that one to one would probably be best. I was then told I would be put on a waiting list which was around 4 months long. Sigh…
Today I was tested for Coronovirus. I cannot begin to tell you how scared I am. I have been out of the house precisely twice in the past month, once for a walk with my husband a son ( that almost sent me into a nervous breakdown) and in the car on Sunday to collect the shopping – hands free collection. Neither of those occasion have I come into contact with anyone. In fact the thought of coming in near proximity to anyone makes me feel physically sick and sends me into a panic. I have helped my husband to put away the shopping after wiping each item with anti bacterial wipes whilst wearing gloves and then washing my hands a lot. We wipe down every surface anything could have come into contact with and as soon as my husband gets in from doing any shopping he changes his clothes.
So I have literally no idea why I have possible Coronovirus.
Two days ago I came down with a really sore throat and headache, not really thinking much of it, but stayed away from my family just in case. That night I developed a fever, not too high but unusual for me so I took paracetamol to help. The next day I started to feel a tickle in my throat like I needed to cough, and since then the cough has steadily got worse. A dry cough but it also hurts my throat and chest when I cough.
I know I am extremely lucky to have had a test. Due to my dad being an essential worker I was able to get a test today.
Let me tell you its not pleasant, especially if you have a gag reflex. You have to swab the back of your throat and tonsils, as well as up your nose, as far as you can. Not nice.
The fear, that I feel of having Coronovirus is overwhelming. It is why i’m sat in my bed isolated in my room writing this at 1 am because I am too afraid to go to sleep. Afraid that I wont wake up, that my heart will give out, or I will suffocate. Only two days ago I was about to get in the shower when I had a very sudden very severe panic attack. My throat felt like it was closing up, like I couldn’t breathe I was so scared, I had to keep telling myself it was OK that actually I could breathe. Now though because I am coughing and I do not know if my symptoms will progress, I keep fearing that I will think I’m just having a panic attack when actually I really cant breathe and it will be too late.
Having OCD around contamination and then actually developing Coronovirus is a worst case scenario. I literally feel the anxiety constantly waiting to pounce ready to claw at me until I’m in shreds. It never leaves, and as much as I try to think rationally I am finding it increasingly difficult to believe what I tell myself. It feels like an impossible feat.
I hope, wish, beg that it comes back negative but I will try to prepare myself and think of strategies to keep calm to avoid making things even worse.
When you hear about Coronovirus on the news it is easy to feel detached from the reality, but it is a stark reminder that it can affect anyone, anywhere no matter how careful you are. Keep those you love safe in whatever way you can, hold them tight because you can never know how long those you love will be with you.
I know I will not take for granted the loved ones I have in my life again.
It doesn’t sound so bad like that does it? In reality however, it’s so much more than what the OCD cycle appears. OCD symptoms vary so much, in severity, frequency and how they appear to each person.
For me my OCD behaviours are in a constant state of flux. The more stressed I feel the more anxious I become. The more anxious I become the worse my obsessions are which lead to an increase in compulsions. This then leads to low mood and depression. Although it is helpful to know the cause and effect, the cycle of thoughts it fails to take into account external factors that make things worse.
I know for myself yes obsessions lead to anxiety but that anxiety is not generally restricted to my Ocd obsessions, it bleeds into all thoughts. Yes, my main worry may be about contamination and feeling dirty but then my mind leads on to other obsessions. Am I sure the door was locked? ( even though I checked it 30 times and then some) Am I sure the toaster was turned off? What if my son gets sick because I took him on the bus yesterday? Once one door is open, they are all open. So even with all the obsessive thoughts, and if I can complete my compulsions, which often you can’t because you are out. Does it help? Well this is a difficult one.
The second I wet my hands and rub in soap I momentarily feel better, a great swell of relief. However even if I can ease the feeling of being dirty what about the other obsessions I can’t do anything about? Well guess what… they don’t go away, maybe I will feel more able to think in a rational way but the longer you go without checking the harder it gets to ignore the thoughts rattling inside my brain. So in conclusion it is only partial relief…
Then comes the Guilt.
So guilt? That isn’t in the OCD cycle or so they say, but I find it to be one of the most difficult things to get to grips with. I feel constantly guilty, overwhelmingly so sometimes, but what do I have to feel guilty about? Well mainly my guilt surrounds my son. He may only be five, but he notices things. Only today he said to me “mummy why do you use so much soap, more and more and more, you don’t need to,” Ouch. It’s like a knife being twisted in my gut. The heart-wrenching knowledge that your behaviours are noticed, the fear that they will develop OCD the fear of being dirty, becoming sick, A life ruined when it’s only begun and worse it’s my fault. That guilt is always with me.
So how does obsessive compulsive disorder feel to me? It’s one thing to talk about it objectively, the cycle of thoughts and all that but how it feels? That’s something else entirely.
It feels like an underlying hum of fear and worry that is always there, simmering under the surface, trying to break free just waiting for a lapse in control. Like ants crawling under your skin, your blood boiling, like waves that crash and tumble against the cliff-side trying to break it down. It is hard to describe to someone unless it is something you yourself are familiar with. The constant fight or flight mode that your body is in. Muscles tense all the time, the feeling of mental and physical exhaustion.
It feels like a heavy load to bare and a lot of the time, lonely. This is why I decided to start a blog, because I don’t want anyone to feel alone. I hope someone will read this and they will know there is someone out there who understands.
When people say it’s only OCD, it can be helpful, it only affirms to me that they know nothing of true OCD. How can something be helpful when it inhibits everything you do in a day? There are often other side effects for sufferers of OCD although some may say they’re just facets of your personality. For instance, I am a perfectionist. I used to think this was helpful, that it would ensure I got things right. Instead, nothing was ever good enough, no matter how hard I tried, however long I spent on minute details it was never right. It always felt wrong. Rub out start again, again and again. So much time spent trying to perfect something that realistically, there was little wrong with in the first place. Sound familiar? I think it is something a lot of OCD sufferers can relate to.
Everything I feel in a day always comes back to the OCD cycle. So when a therapist says you need to break this cycle, take it with a pinch of salt. Although therapy works for some, it hasn’t yet for me. What works for one will not work for everyone and I urge you to speak with others who have OCD because shared experience goes a long way in finding ideas to help in easing symptoms.
“With OCD it’s like there is two sides of your brain constantly warring, rational and irrational, the question is which one wins. Don’t let the fear decide for you”
Would you call yourself a fearful person? I do. In some people fear is just a small thing that can be shoved at the back of your brain, locked away laying dormant. For others fear is a very real part of everything they do. It’s all consuming.
For me fear is a major contributor to my OCD and even though I am aware of the part it plays, I’m yet to be able to control it. Fear doesn’t wake me up, it shuts me down, how many of you have experienced the same thing? So how do I know the part fear plays in my mental health? Well it’s simple really. My obsessions are based around fear.
Fear of contamination – I worry constantly about being contaminated, that everything is dirty, and it is that fear of becoming contaminated which drives me to obsession. That is one of the hardest things to get to grips with in my daily life, because to me everything is dirty, the shoes that I have to put on my son’s feet, the taps and door handles to the bathroom, the door keys, it always feels like there is a list a mile long of obstacles to overcome before you even reach the front door in the morning.
Fear of something bad happening. I check things constantly, and even if I have done all my checks I can’t be sure that they’re done properly, that it will stop something bad happening. Sometimes it’s just a feeling you get in your gut, but other times you’re convinced that you didn’t check the oven was off and as a result the house will catch fire. It doesn’t matter if you checked it a certain number of times or in a certain order the fear that it will happen is very real, and often it bothers me all day, sometimes to the point of a panic attack. My brain will just unhelpfully remind me of the one time it actually wasn’t off and use that as proof and justification for my fear.
Fear of it being my fault . Even if a tiny slither of your brain understands you did everything you could, took every reasonable precaution you could think of at the time. If something bad happens you go from fearing it is your fault to knowing it is your fault. It is something I war with, and it all leads back to the OCD guilt cycle.
I truly hope one day, I will own and accept my fear. Maybe then I will be able to control it, until that day comes I will keep fighting, even if giving up is what seems easy.