It Finally Happened... I Got A Diagnosis!

If you've been following Safe Space for a while - or know me at all - then you will probably know that I have been really struggling with my physical health. I've written a few posts about my journey on this blog which you can find here, here, here, and here.

It has been two and a half, maybe three years (I've lost count to be honest) of pain, extreme fatigue and utter frustration. I went from one doctor to the next trying to explain to them what was going on with me and how I knew something was wrong and I kept being dismissed, told to lose some weight, sleep more, eat better, do physio, etc. They tried to treat me with respect but mostly I think they thought I was just wasting their time. I had anxiety and OCD and depression and it was all just causing my body to hurt. So they sent me away time and time again. Sometimes with a referral, sometimes not. But at the root of it, I knew that they didn't think there was anything wrong with me.

Maybe I am judging them too harshly. After all, they only get to see me for ten minutes and when I'm around doctors I clam up, especially when they started blaming it on my mental health or weight. I would just nod and let them tell me that I need to exercise more despite the pain I was feeling which made it hard to get out of bed, let alone exercising!

About a year and a half ago I read somewhere how crucial Vitamin D and B12 were and how they could be a cause for fatigue. After having every other blood tests under the sun and all the results coming back completely average, I was told that "everyone in the UK is vitamin D deficient anyway so there was no point in testing for it." I was told that if I was still concerned in six months, to ask for a test then.

I did. I was told that I was probably just overweight and overworked and thus that was why I was feeling lethargic for that reason. I told them about my painful hands - because how could they be hurting if it was just because I was overweight - and that did seem to stir something in my doctor but instead of the blood test I wanted, she booked me in for an x-ray on my hands to check for arthritis.

But guys... I finally managed to get a doctor to agree to a blood test to check my vitamin D and Vitamin B12 levels.

And guess what?

I am severely vitamin D deficient.

The average person should have a level reading somewhere between 75 to 200. A reading of 25 is considered extremely deficient.

My reading came to 17.

17.

Do you want to know what I've found out about vitamin D deficiency?

• It causes unexplained fatigue
• It can make it difficult to think clearly
• It causes bone pain
• It causes joint pain
• It causes muscle pain and weakness
• It can cause weight gain
• It can make it harder to lose weight
• It can affect serotonin levels increasing risk of depression
• It can cause gut issues, especially concerning lactose...

Do you want to know something else?

I have all of these symptons. Every. Single. One.

I knew something was wrong. I knew it wasn't just because I was overweight because I have always been overweight and so why would my body suddenly be complaining about it all now? 

And because I knew it, I did not give up. I kept going back. From one doctor to the next, from one test to the next. I was determined to get the bottom of it and determined to prove the doctors wrong - it wasn't just because I was an overweight lazy person or because I ate like crap or because I was mentally ill. It wasn't all in my head. There was something wrong with me.

I have been told it will take a while for the supplements I now have to take to return my levels to normal but I have a hope inside of me that I haven't had for a long time. I believe that I can get my activity levels back up, my energy back up and be the person I used to be, the person I long to be again. It may take time, but I'm ready. I've waited three years, what's another few months?

So to end this post, I just want to say that if you have something ailing you, if you are certain that something in your body isn't right, please listen to your body and keep going to your doctor until they take you seriously and you get the diagnosis you need.

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The Deep Breath before the Diagnosis

This is going to be a post of two parts. Half of this I'm writing Before, the other half will be written After.

After what?

After I see a Doctor seeking a diagnosis for whatever has been fucking up my mental health for the past 3+ months. The likely bet is depression, possibly with a dollop of anxiety to make things even more fun. I probably should have made an appointment for this *weeks* ago but that miserable little voice which I've talked about before has been a real bitch for talking me out of making that phonecall because it says things like "why do I need to see a doctor? There are loads of people way more unwell than I am, it's probably nothing. I'm just being lazy etc."

Over this summer I've become aware of my mental state in a way I don't think I have been previously and there is no getting away from the fact that I am not all right. I can literally tick almost every box of Depression symptoms without fudging my memories to fit (Anyone who follows on me twitter knows about my inability to wake up at a reasonable time & to feed myself proper meals). It is not good for me to continue avoiding getting a proper diagnosis, I don't think that sheer willpower alone is going to drag my head back out of the black pit that it's been living in for last stretch of time.

I just need to actually be brave enough to ask for that help - one of the hardest steps has been taken. I've made the appointment to see a Doctor. That's an accomplishment I should hold onto. The next step is going into that room and telling a stranger that my brain has been dousing itself in misery and is drowning in it to the point that I need someone to throw me a line to pull myself clear.

Obviously I am nervous to HECK about having to explain everything. There's this nagging fear that the Doctor won't actually believe that I'm actually depressed and send me home with only the sickening thought that I just need to pull myself together and stop wasting their time. That's the worst case scenario for me. I *need* to know that I'm not imagining all of these awful feelings.

So I'm taking a deep breath. And hoping that I don't get the wind knocked out of me when I hit the water.

After
Well I went to the Doctor's, admittedly I only got out of bed 12 minutes before I needed to be there and I was teetering on the verge of falling back to sleep for at least an hour before I moved. But I went.

And whaddya know I *do* have depression! The Doctor used basically the same damn diagnosis quiz thing I used myself last night on the NHS website and I came out with a 14 on what I could very flippantly call the Depress-o-meter (My sense of humour tends towards the morbidly dark when dealing with the unpleasant issues). That apparently means I'm at the upper end of "moderately depressed".

Now what?

The Doctor I saw wasn't particularly gifted with sensitivity settings so it was suggested to me that I ought to be making changes in my life to deal with the root causes of my depression, (the fact that I'm unemployed is definitely not helping) I need a reason to actually get out of bed in the morning and currently my own willpower is not motivation enough. The phrase "need to stop moping about" may have been used. *sigh*

It was also suggested that getting a part-time job to fill some time & tide me over financially while I figure out what the fuck I'm doing long-term would be "easy" like jobs are just falling from trees around here. Just because there is an enormous Tesco a stone's throw from my house doesn't necessarily mean that they are in need of staff.

I am fully cognisant of the fact that I need a job both for financial reasons and mental health reasons. I am not one of those people who can manage and divide up their time to use it productively without it being required of me. If I had a boss who was expecting me to get up at 7am in order to get to work on time then I could do it, but when it's just me thinking "oh you should do x,y & z today"there's no real incentive to follow through because there's no consequences if I don't do those things.

Of course there is the shame & self-loathing of knowing I failed to do what many people can do with nothing more than willpower as their motivation. But currently my inability to get out of bed and get things done is somewhat out of my control - if my brain has foxed itself on how to produce the chemicals which make me want to wake up in a morning and not feel like someone has simply dug me up with little care that I'm soft and squishy - then is it entirely my fault that waking up before 9am has become such a foreign concept?

When I initially had my diagnosis (it's now a week later because this post didn't get finished last Wednesday like it was supposed to *quelle surprise*) I didn't get a prescription for anti-depressants because I thought that maybe I'd be able to sort myself out by just booking some counselling & getting a job or whatever. But after mulling it over for a week now I've started to realise that in order for me to make the lifestyle changes which will allow me to stabilise myself I do really need to be able to function for a good portion of every day.

At the moment I can't - I'm waking up late every day, not really getting out of bed before noon & then milling about aimlessly for several hours before Le Boyf gets home from work and then we're both sat around doing nothing for the rest of the evening because it's very likely that he's also depressed and can't be fucked with anything.

So I'm going to look into getting meds, because if they help me to function well enough to get up properly, do the things I need to do & sort out fixing the root causes of my depression then it can't be a bad thing to try them. Just got to make another appointment at the doctor's and *not* with the original guy because I don't need my worst perceptions of myself reinforced again ta very much.

This has been a bit of a rollercoaster post and has taken me far longer than I would have liked to finish. That's another thing which depression has fucked up for me - writing. It's been like trying to transfigure shit into diamonds with a toothpick. Agonising and damn-near impossible. I'm hoping like hell that meds will help whatever it is that has kicked the bottom out of my creativity or the next 9 months are going to be hellishly difficult.

So deep breath, let's try to deal with this. One day at a time.

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10 Things I Wish I Knew When I Was Diagnosed With Anxiety

I’ve been living with anxiety for over ten years now and I’ve learnt a lot about it and myself along the way. When I was first diagnosed, I remember being very scared and was given very little information about what having this mental illness meant for me from health care professionals. Looking back there is so much that I wish somebody had told me when I was first diagnosed, so today I wanted to share with you the ten things I wish I knew when I was first diagnosed with anxiety.

Panic Attacks Can’t Kill You 
Even though it really feels like you’re dying sometimes, panic attacks can’t actually kill you. My first therapist told me that most panic attacks usually don’t last longer than 20 minutes. Knowing this made having a panic attack a slightly less terrifying prospect and made them lose some of the power they had over me.

Avoidance Makes Things Worse
When I first developed anxiety, I quickly learnt that a great way to not feel anxious was to completely avoid the things that made me scared which later developed into agoraphobia. Although it’s really tempting to hide away from the things that scare you so that you don’t have to deal with them, it usually just makes the anxiety surrounding the situation worse. Every time you avoid a situation that makes you anxious you are feeding that belief. In my treatment for anxiety, I have learnt that the only way to get over a fear is to become familiar with it and create positive associations and memories around it. It takes a lot of courage to take that first step, but every time you face a fear it loses some of its power and gets easier the next time around.

Medication/Therapy Won’t Change Who You Are 
I used to be so afraid of the idea of taking medication for my anxiety or telling a therapist my deepest darkest thoughts and feelings. I was worried that by treating the mental illness it would mean changing a part of me. I wish I knew how much taking medication and going to therapy would help me so that I would have done it sooner. Medication and therapy has not changed who I am, it hasn’t messed with my brain and made me into an unfeeling zombie. It’s simply made me a less anxious person who can better manage their mental illness.

Not Everyone Will Understand 
The biggest frustration for me when I was first diagnosed with anxiety was how little the people around me seemed to understand about it. For many years my family were at a loss for what to do to help me, they just couldn’t understand why I was terrified of such normal mundane things. Something that really helped things click into place for my family was when I explained mental health in metaphors and related it to the way we treat physical health. Give the people around you time, be as open and honest as you feel comfortable with, pull information from the internet and learn as much about your illness as you can so that you can better explain it. The people you love might not always understand, but them asking questions and wanting to know more shows good intentions and is a starting point so don’t lose heart.

Take Baby Steps
The best method in confronting anxiety for me has been to break things down into baby steps. Scared to walk down the street? Start by just opening your front door. Increase how long you can keep that door open for. When you start to feel more comfortable, take a step outside. Work up to taking three steps away from your house. When you’re ready, walk to the nearest lamppost. See what I’m getting at here?

When it comes to facing your fears you don’t have to dive in at the deep end. Start with the step that feels the most doable to you and work your way up to the bigger stuff at your own pace. It doesn’t matter if it takes a week or a month or even longer to achieve your goal, you’re still kicking anxiety’s butt. Make sure that you celebrate your successes no matter how small they may seem, they’re each a step in the right direction.

Bad Days Are Allowed 
I used to worry so much if I was having a bad day/week/month with my anxiety that it meant that I was going backward. Now I’ve learned that it is completely normal and okay to have a bad day. Even people who don’t have a mental illness have bad days. Life isn’t perfect and there will be ups and downs along the way. These days, if I’m hit with a bad bout of anxiety I try to ride it out like a wave and if I have to take things back a step because everything suddenly seems too hard that is okay. Go back to your easiest step and start building yourself back up again.

Put Yourself First 
Like any illness, when you are unwell it is important that you prioritise and put yourself first. I used to feel really terrible if I had to cancel plans or let somebody down because my mental health was bad but now I realise that on the grand scale of things your health is more important. Never push yourself to do something you don’t feel ready to do for somebody else. Respect yourself, your boundaries and your health and don’t be afraid to take time out to rest and look after yourself.

Mental Illness Does Not = Crazy/Dangerous 
Oh boy, when I was first diagnosed with a mental illness I was so afraid to tell anyone in case they thought that I was crazy and/or dangerous. There is a really negative belief out there about people with mental illnesses and that they might pose a threat or be a danger to society. I used to be really frightened of myself and what I might be capable of. Having a mental illness does not make you dangerous or crazy. You are not about to go on a murderous rampage just because you are ill. So many people are living and functioning in this world with a mental illness. If having a mental illness turned us all by default into the crazy killer stereotype that horror writers are so fond of portraying then the world would be apocalyptic right about now.

Living Life Trumps Fear
Something that I have learnt only recently is that fear is not a good enough reason for me to not live the life I want to, not anymore. Every time that I have felt like I was going to pass out from panic but carried on anyway it has been worth it.

Every. Single. Time.

When it comes to doing the things I want to and living my life, fear is not a good enough reason to hold me back. I would rather be terrified and get to do what I want to, than let anxiety dictate what I can and can’t do. My life is of more value to me than fear.

You Will Get Better 
You know, people used to say this to me and I never believed them. I couldn’t imagine ever getting rid of this albatross that I carry around with me everywhere. Here’s the secret, when people say you will get better they don’t mean that your anxiety will get better, they mean that YOU will get better at managing it.

Ten years on from my diagnosis and I am still living with anxiety, it hasn’t gone away completely and to be honest, I don’t think it ever will. But *I* have gotten better. I have gotten better at dealing with it, I have gotten better at putting myself first, I have gotten better at riding out a panic attack, and I have gotten better at facing my fears. It takes time, but you come to learn your illness and how it affects you and at first you begin to cope and then you begin to thrive. Anxiety doesn’t get better, but you do my friend, you do.

If you enjoyed this post, you can find more on: 

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Guest Post: The Rag Doll Disease by Hayley Steed

It was in my second year of university I started noticing my body struggling. The first thing was that I couldn’t use a straw, my mouth just wouldn’t close around it but I didn’t think it was a big deal. Then it was paralysis of my face – I’d be doing my makeup and I just couldn’t move my forehead or make my lips meet. It got worse when my speech started to slur and I began to choke on my food. I went to my university doctor about 5 times in 3 months, asking for help to be told it was stress, anxiety, migranes etc. It wasn’t until I went home to my local surgery that someone realised something was wrong. I was referred to a neurologist but the waiting list was 2 months – in that time I dropped to 6 stone from not being able to eat and I have vivid memories of having to leave restaurants with my boyfriend from everyone staring at me whilst I choked, to physically putting my fingers down my throat and picking out food I was choking on all whilst holding my breath.

My neurologist, Dr A as we like to call him, sent me for MRIs and CAT scans immediately before I was diagnosed with Myasthenia Gravis, nicknamed the Rag Doll disease. It’s an auto immune illness meaning severe muscle weakness. Essentially my body’s immune system attacks itself and sends antibodies to kill the messages from my brain to my muscles, so they just don’t receive the message and don’t move. That’s anything from my eyes drooping, to not being able to smile, to my swallowing muscles failing, to my lungs struggling. Dr A wanted to admit me but only let me go home as my Mum is a registered nurse. He told me to cancel mine and my boyfriend’s first holiday together which was just 3 weeks later, and cancel the trip to America my family had planned for several months later in the year, which was when I knew how serious it was. One of the hardest parts still was sitting outside that hospital and ringing my boyfriend to tell him I was ill.

I started on medication and in December 2013 at the age of 20 I had a transsternal thymectomy (they cut open my chest and took out my thymus gland which had a tumour.) I was his youngest ever patient and they told me it had 1/3 chance of making me slightly better, but not curing, 1/3 chance I’d be exactly the same and 1/3 chance it’d make me worse. It’s such a rare disease, they know so little about it. They don’t know what causes it, or how to really fix it. Either way I’d have the scar which runs the length of my breastbone and three ‘bullet’ hole scars underneath from where they fed drains into my lungs, which they took out when I was awake two days later. The only thing I’m going to tell you about that operation is that because my illness is all about muscle weakness, they couldn’t let me have any painkillers before I woke up. Usually they’ve already hooked you up to a morphine drip so you wake up with painkillers inside you – I didn’t have that in case it meant I didn’t wake up. I woke up feeling the full effects of the operation, screaming.

A couple of months before my 21st birthday they found a blood clot in my leg so I was on more treatment for that, meaning I was not allowed to drink for my 21st. I nearly had to cancel my birthday trip to Rome but I pretty much told them that wasn’t happening unless I could die doing so. I went. I’ve had two relapses, one when my eye closed for about 2 months, I’ve no idea why. I had to cancel all my work experience and just stay at home for that time. The other was last summer. I had a week where I kept waking up in the night feeling very phlegmy, to the point I couldn’t lay on my back because I felt like I couldn’t breathe. Then one morning I woke up and I couldn’t breathe standing up. I went to A&E, was met by ICU and strapped up to IVIG, a drug which essentially restarts your immune system. I had that over a course of 5 days which left me exhausted but it worked. That’s the only time I’ve come close to dying from it. (I had to cancel another holiday me and my boyfriend were supposed to be going on).

Something that came alongside the physical illness, was the anxiety. It’s better now, but for the first couple of years of diagnosis, I just wouldn’t go out. I was terrified it would make me more ill, or if I went for a meal, I would choke and either everyone would stare or I’d die. I didn’t like people seeing me when they knew I was ill because I thought they’d be looking for signs of it and I didn’t want to see anyone who didn’t know I was ill and have to explain why I couldn’t speak properly all of a sudden. Now, even though most people know I’m ill and I rarely choke at meals, I still get panicky when I’m going to events or meeting an author that my speech or face will just drop and they’ll wonder why. It’s a vicious cycle because the anxiety and stress makes my symptoms worse. Sometimes I try to joke about it so if I’m with my friends for a special occasion I always take my pills and say ‘if we’re taking photos, let’s do it now whilst my face works’. My worst bout was after my second relapse – I’d wake up every morning in a hot sweat, panicking in fear of waking up and not being able to breathe again like before.

My friends now tell me how snappy I was after being diagnosed and I was – I was angry. I was angry at the hand I’d been dealt, angry that I wasn’t like them anymore, that I couldn’t be ‘normal’ and angry that none of them seemed to think it was a big deal. An illness like mine, one which can’t be cured, brings a lot of frustration with it. It dictates every moment of my life – I decided I still wanted to work, which I do, and to live my life, which I do. But if I have an event in the evening after work, it will tire me out for the next few days. I can’t go to a different bookish event each night like I wish I could, I have to carefully plan. I can’t go to bed late, because if I’m tired, my muscles will be so much weaker. Numerous times I’ll be mid-way up a flight of stairs and my legs will give way – I just have to sit and let everyone walk by me until I’ve rested enough to go again. Most of the day I can’t smile, because my cheeks aren’t strong enough. I frequently look liked I’m mid-stroke and my medication heavily increases my risk of cancer. Rest is the biggest word in my life and it’s so frustrating, as a 20-23 year old to be told you can’t when you have always been able to and that’s always what I’ve struggled with most. If someone who knew me in my pre-illness years saw me now they’d be shocked. I used to love going out, I loved drinking and clubbing, I was loud and brash. I’m still quite brash, but if I go out, which is rare, I don’t drink because it’s a depressant and makes my muscles weaker. Even without alcohol, I can’t do stuff every day like ‘normal’ people can, I always have to consider what will tire me out, what will be too much first. It’s constant.

My scar then and now

Most importantly I think we need to stop putting illnesses on a scale. I had so many comments after being diagnosed like ‘at least it isn’t cancer’ or ‘at least it isn’t a brain tumour’ and yes, I’m so thankful I haven’t had to go through either, but does that make mine any less valid or difficult to live with? My own friends thought my illness wasn’t a big deal, until they nearly saw me die from it. But people can die from depression, from cancer, from Crohn’s, from epilepsy, from anxiety. So many people have a story like mine, of struggle and pain and difficulty. Mental and physical health don’t need to be measured or met with judgment of how bad they are.

This has probably been a quite depressive post so I’m going to list some good bits:
• It’s been nearly 3 years since I was diagnosed and I’ve gone from 40 pills a day to 8. I’m stable and have no signs of relapsing anytime soon *fingers crossed*.
• This was all going on in my 2nd and 3rd year of uni. I’d get extra time to finish my work after my operation and blood clot in 3rd year, and I got a First. I’m damn proud of that.
• I’ve been on several fantastic holidays which I haven’t had to cancel including driving the coast of California with my family and Rome for my 21st birthday.
• My incredible boyfriend has been with me since day 1 and has stayed throughout the most difficult times, even when I was freaking out about my ‘ugly’ scar.
• I’ve never been so close to my family – I had to call my Mum at 3am from my bed after coming home from the op to come and spoon feed me morphine because it hurt too much to move. After an experience like ours, you value everything so much more and we’re pretty much best friends. • I’m really happy – I got a job in publishing and my illness is settled enough to live with. I’ve got used to my life being toned down.
• Since my op I have skydived and abseiled to raise money for our charity – Myaware. This year I’m taking part in an attempt to beat a world record of skydivers and my Mum is jumping with me. If you want to sponsor me you can find my page at www.justgiving.com/HayleySteed3

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My Mental Health Treatment Journey Part 2: Therapy

This is the second part of my mental health treatment journey all about therapy. Make sure you check out part one about medication here.

Like taking medication, I was very reluctant to go to therapy. I think I was around fifteen when I went for my first therapy consultation and I was very self-conscious. I was worried that someone I knew would see me go into the mental health section of the hospital and tell everyone I was mad. Back when I was a teenager mental illness was still a very taboo subject that had a lot of misinformation surrounding it. There was no Depression, Anxiety, PTSD and OCD known to my friends, there was just sane and crazy and nobody wanted to be associated with the mad girl.

That first therapy appointment was a bit of a disaster. Back then I didn’t have a diagnosis and just assumed that I was depressed. My GP had referred me to the children’s mental health services at my local hospital and I remember being very nervous. This was the first time that I’d ever told a stranger my story. At the end of that appointment the lady I’d poured my heart out to for the past hour basically told me that she wasn’t really qualified to treat me. You see, what triggered my mental health problems was being in a mentally and physically abusive relationship with a boyfriend. I was essentially a child with a grown up problem that that particular therapist had no experience in handling. After weeks of getting my hopes up and psyching myself up to tell someone, I was sent away and told that I would need to see an adult psychologist. Sorry.

I was on the NHS waiting list for a good six months before a letter came through with an appointment to see a therapist at the big doctor’s surgery in my hometown. The only problem was my mental health problems had gotten so bad at that point that I could no longer leave the house never mind go to a place near where trauma had happened to me. After months of waiting I’d hit another dead end. I remember overhearing my mum on the phone to our doctor in tears begging him for help “She can’t go, I don’t know what to do” she whispered into the phone. He said that if I “refused” to go to the appointment there was nothing more he could do. Even my doctor didn’t understand that I desperately wanted therapy but I physically could not leave my house.

Deciding to take matters into our own hands, my mum found a local domestic violence support group who we got in touch with. They said they could send a support helper to our house for weekly appointments. I was so relieved to find someone who could help me. At the time a lot of mental health professionals had stopped doing home visits because of safety reasons (so I was told time and time again) so I couldn’t believe I’d found someone who not only had dealings with people who’d experienced domestic violence but who could also come to my home so I didn’t have to go out.

A couple of weeks after contacting the group a lady was sent to my home to learn more about my situation. I explained about how I was in an abusive relationship and how that had triggered some sort of depression. I was so hopeful that day but again was left disappointed. The lady didn’t seem to know what to do with me. All of her information sheets she gave me to read were about women who were married or have children and not for a teenager like me. At the end of the session she suggested making an appointment for both me and my ex to talk about the abuse because she wanted to hear his side of the story. The last thing I wanted was to see my ex again after finally breaking away from him. I had a huge panic attack and when she left I spent the rest of the afternoon in my bedroom in tears. I can’t explain how disheartening and lonely it feels to get knocked back time and time again when it comes to something so very personal.

With another road blocked off to me I went to see a new doctor who wanted me to get a proper diagnosis. A couple of weeks later I went to the mental health building at another nearby hospital to get assessed by a psychiatrist who diagnosed me with PTSD, Anxiety, OCD and Depression. It felt so good to finally know what was wrong with me. I went back to my new doctor with my diagnosis and explained to him about what I now knew was my Anxiety and PTSD making it impossible for me to go to places locally that triggered panic attacks and flash backs from past abuse. He was really understanding and referred me to a quiet little practice an hour’s drive from where I live.

Once again I was put back on the waiting list and this time it took eight months for me to get an appointment. By this point with no treatment for over a year I had untreated PTSD, crippling Anxiety, OCD and Depression. I was basically a recluse whose days consisted of debilitating routines and safety checks that could go on for hours. On that first appointment I had to share my entire back story again and was so scared that I would be turned away and told there was nothing they could do for me. At that point I was desperate for help. When she started talking about the type of therapy she wanted to do with me and asked me to make another appointment with her I burst into tears. I was just so relieved that I’d finally found someone who could help me.

The NHS gave me 24 appointments with my psychologist and she decided to treat me with CBT (cognitive behavioural therapy) a type of therapy used to stop a cycle of negative thoughts and create positive associations with things that scare you. Having CBT is one of the hardest things I’ve ever had to do. I constantly had to face my fears and challenge myself. I described the fear I felt to my family as feeling the same way they’d feel if they were put in a cage full of lions. We focused most of my sessions on treating my OCD which was probably the most out of control at that point. It was incredibly difficult and I didn’t enjoy it one bit but I slowly noticed myself getting better and started to find things easier. I’m pleased to say that as I type this my OCD is now pretty much completely under control.

I was so disappointed when my 24 sessions were up because in that time I’d managed to tackle all of my little fears and was now ready to move on to the big stuff and we hadn’t even begun to treat my PTSD. I was advised to take a break from therapy for a while and put the new strategies I’d learned from CBT into place on my own. Both my psychologist and doctor thought that I’d really benefit from some counselling which at the time I wasn’t ready for. I knew that counselling was going to involve talking about the past and I’d just got to a point where I was starting to feel better and build a new life for myself. The last thing I wanted to do was to look back to where I started. I wanted to move forward and was determined that I could do so and I did. I spent a few years out of therapy putting the things I learned from CBT into practise in real life situations and continued to move forward on my own with the help of medication.

Last year I got to a point where I felt like I’d got as far as I could go on my own and now I needed some more help. I’d started to build a solid new life for myself and felt strong enough to look back. My doctor said that what I’d been doing was putting a plaster over the wound which fixed it for the moment and stopped it from getting worse but it was now time to take the plaster off, go in and clean it up and stitch it together properly so that it could finally heal.

Going to counselling was one of the bravest things I’ve ever done. I managed to find an excellent private counsellor. I didn’t want to have to be put on the NHS waiting list again, this time I wanted to do treatment my way and be able to have as many sessions as it takes. She knew my financial situation wasn’t great and so she very kindly charges me half her usual rate. Her house is in the middle of the countryside it’s so peaceful and I love going there. Together we’ve looked at my past and how that affects my present and how my PTSD being left untreated for such a long time made it dangerously worse. I trust my counsellor completely and have started taking my biggest steps in treatment under her gentle guidance.

For me, timing with counselling was everything. I think you can have the best counsellor to talk with who gives the best advice but unless you’re in the mind set where you’re ready to put the work in and be uncomfortably honest, you won’t get the most from it. It’s hard work and it’s so easy to miss an appointment or to hash over the truth. I know that if I was to start counselling back when I’d finished my CBT I wouldn’t have opened up in the way that I have now and said the things I needed to say. I was like the person who desperately wanted to be thin but didn’t want to do the diet or exercise to get there, it just seemed too hard for me back then, I wanted immediate results and none of the hard work. With therapy, unlike medication, the hard work is ultimately down to you. It’s difficult and leaves you feeling like your heart has been scrubbed raw some days but my god is it worth it.

If medication is my shield then therapy is my battle plan. It’s knowing what areas are going to be difficult so I can prepare, it’s knowing my strengths and putting strategies in place to get through the hard times. Now I’m at a place where I have my shield in hand and my battle plan in the forefront of my mind. The war inside my head is not over but I’m in the midst of it now and I’m not alone. I have trusty allies by my side and confidence in knowing that when the battle is over and the dust has settled I have a future waiting for me on the horizon and it’s one worth fighting for.

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My Mental Health Treatment Journey Part 1: Medication

The other day I was talking to a friend about my experiences with medication for treating my mental illnesses. She was starting the same medicine that I’m on and wanted some guidelines on what to expect. After talking to her I realised that talking about what medication you’ve tried and what sort of therapy has helped you isn’t a common topic of conversation. 

When starting a new course of treatment it’s normal to have questions but other than talking to your doctor there’s nowhere to really turn to for these discussions. So I’ve decided to share with you my experiences with medication and therapy in the hopes of encouraging people to start having these conversations and also to hopefully shed some light on the different kinds of treatment out there. 

It wasn’t until I started writing this post that I realised that my story is a long one and so I’ve decided to split this into two parts, this first one is about medication and the second part which will be up later this month is on therapy. 

As a disclaimer it’s important to know that different medicines and therapy are used to treat different mental health problems and one set way doesn’t work for everyone. This is just my personal journey.

My first step in treating my mental health problems was with medication. My family noticed something wasn’t right with my mental health before I did, so when I was fourteen after a lot of coaxing (and the promise of a McDonalds after) my mum took me to see our family GP. I remember him speaking to her rather than me and them talking about my moods and how important it was for me to get through my GCSE’s. He prescribed me a low dose of Prozac and wrote off my moods as stress from school. The Prozac seemed to do the trick; it got me through the next few years although I did notice that I often felt happy or sad with nothing in between. When going for my medication reviews this was wrote off as typical teenage mood swings.

When I was sixteen my mental health got vastly worse and so I went back to my GP who put me on a higher dosage of Prozac. That’s when things went very bad. My moods were either very high or very low. I’d either spend my days constantly on the go or struggling to get out of bed and go to school. One morning I got out of bed and honestly felt the worst that I’ve ever felt in all of my years living with mental illness. In tears, I made it downstairs and collapsed on the living room floor hysterically crying. I was inconsolable and had no idea what I was crying about but I couldn’t stop. I felt deeply depressed and just wanted the dark cloud that seemed to be following me around, weighing heavy on my shoulders, to go away. I felt like I'd literally hit rock bottom lying on that floor. My mum couldn’t get me off the floor, never mind to the doctors, so she made an emergency phone call to him. He said I’d had a bad reaction to the Prozac and that I was to come off it immediately. Slowly, as the Prozac came out of my system, I started to feel better. My mental illness was still there but I didn’t feel as bad as I did on Prozac.

My doctor wanted to try me on a different medication but after my bad experience I was very reluctant to give anything else a go. Slowly my mental illness (which I didn’t have a name for back then) was steadily getting worse. My typical day consisted of waking up and feeling too anxious to leave my house so I’d stay in. Trying to make myself useful, I’d fight off the depression that was demanding that I stay in bed and force myself to shower, prepare meals and tidy up all of which required me to check certain objects or touch switches and door knobs repeatedly until the feelings of anxiety subsided - a ritual that could go on for hours. Then, mentally exhausted, I’d collapse into bed and sleep the rest of the day away. Something had to change but I was so scared of going back to my GP in case he wanted me to try medication again, which at this point I was really against. After much persuasion from my nearest and dearest I went to see a different doctor. Before doing anything he wanted me to get a proper diagnosis, something that other mental health professionals have since told me should have been done all along.

Two weeks later I had a one off appointment at the mental health branch of a local hospital and was asked some questions for about an hour by a psychiatrist. After the appointment finished she asked me “What do you think is wrong with you?” and I answered “Depression” it was the only mental illness that I’d heard of at that time that somewhat fit my symptoms. She diagnosed me with PTSD, Anxiety, OCD and Depression. I was confused, I said to her “I thought PTSD is what soldiers who’ve been to war have? And isn’t OCD when you need things to be clean and worry about germs?” She was brilliant and explained to me that the abusive relationship that I was in at that moment in time had created trauma in my brain and that OCD is more about the obsession behind the acts rather than what you actually do to stop the anxiety.

Having that diagnosis changed everything for me. My doctor now knew what was wrong with me, I could research the illnesses online and find people like me. It made me better understand my moods and  knowing what was wrong made it treatable. If you think you have a mental illness I’d strongly recommend asking your doctor for a referral to get properly diagnosed by a mental health professional so that you can get the right treatment. There are a wealth of mental illnesses and conditions out there that you may not have even heard of or considered. Knowing what you have and treating it correctly can make all the difference. It's like if you went to your doctor and were treated for eczema when you’ve actually got impetigo. Getting the right treatment for your condition is crucial.

When I went back to see my GP with my new diagnosis he then prescribed me Citalopram. I was very cautious about this but my doctor was really great asking me to keep in touch with him if it made me feel bad and saying that I could come off it or we could try something else. He told me that just because one medication didn’t work, doesn’t mean that none of them will. Those words were the real turning point for me and are something to keep in mind when going through treatment. Confident in my diagnosis and trusting my new GP I bit the bullet and tried Citalopram, because of the severity of my mental condition at that point I was put on a high dose of 60mg. At first it didn’t feel like the medication was doing much but a few weeks in and I started to feel very numb and a bit like a zombie. I hated feeling that way so in my medication review I was honest with my doctor who decreased it to 20mg which turned out to be the perfect amount for me.

Taking Citalopram certainly didn’t cure my mental illnesses but it did soften the sharp edges of my mind making the PTSD, Anxiety, OCD and Depression easier to live with. It also didn’t come without a trade; I put on weight, lost my sex drive and often felt lacking in energy. But to some extent I got my life back so guess who won that trade off? I’ve been on a 20mg dosage of Citalopram for the past ten years; it suits me and has improved my life so much.

I’m so glad that despite my bad experience with medication I tried again. There is so much negative stigma surrounding taking medication for mental illness and I was someone who, for a time, believed that stigma and refused treatment that could have made me better sooner. For the record, taking medication hasn’t changed my personality - if anything it's made room in my brain for my personality to shine through now that it’s not so cluttered with obsessive thoughts and all that darkness. It hasn't dulled my creativity (hello blogging!) and I still experience other feelings vividly and intensely. For the longest time I truly believed that medication was my enemy. That taking it was weak and wrong and would change who I was. Medication is not my enemy. It’s the shield I use to stop the mental illness from hitting me so hard. Deciding on whether you want to take medication or not is a personal choice, but know before you decide that there is no right or wrong option and that there is no shame in picking up that shield.

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