In Sickness and in Mental Health

I think most of you know me as @carersvent. But my real name is Samantha and I became my husband’s carer back in 2011 after the physical health problems he had been hiding from me for years finally became too much. He suffers from Chronic Pain, ME, Functional Neurological Disorder and early onset Arthritis. The list of symptoms go on and on, but after constant pain, these cause him to fall, have dizzy spells, muscle paralysis, muscle spasms, seizures, etc, etc.

What I didn’t realise was that he was also hiding some severe mental health issues too. 

I’d always known that, like myself, he struggles bouts of depression. In fact in 2004 he left his job as Senior Store Designer for a well-known supermarket after what I can only describe as a mini breakdown. At the time I thought it was just the pressure of his job had got to him. Little did I know that his depression was far more severe than that and he was struggling with thoughts of suicide. 

Within weeks of becoming my husband’s carer it was clear to me that it was more than his physical health, but also his mental health that he was having problems with. I’ve always thought of my husband as being very strong, confident and having a larger than life personality, but I had also seen another side of him where he would verbally attack me (I will talk about this more later).

So it took me by surprise when my husband started having major panic attacks! I don’t know how, but I somehow pushed my own surprise, fear and emotions aside and just took charge. It wasn’t really a conscious choice to become his carer, it was just what I did without thinking as there was nobody else.
I think the most extreme example of him having a panic attack was at his ESA Assessment, My husband went through what can only be called a range of emotions, which included him trying to harm himself, crying, screaming, shouting, laughing and being terrified. To me he always looks like a lost child when he gets like this. It does shock me seeing him like this, but I simply have to put that aside and take care of him.
When he gets like this I usually talk to him in a calm and reassuring manner and tell him “I won’t let anyone hurt you”. If you saw me doing this you’d think I was talking to a child and not a grown man. It’s sad how mental health can change someone you love so much, but you have to remember that it should never define them. They haven’t chosen to be this way.
My husband also suffers with severe anxiety and when it gets really bad he will harm himself, either by scratching his arms or bashing his head. I do my best to stop him hurting himself but, unfortunately, this can sometimes be difficult.

Whenever I have to take my husband to appointments I have to watch him constantly for signs of anxiety, panic attack and self harming. As if that wasn’t enough, he also suffers from non-epileptic seizures, so I also have to watch out for signs of those too…

I’m sure you’d all agree that trying to cope with all that is enough in itself, but my husband also has a very dark side to him. This is something I have had to deal with ever since I’ve known him (nearly 20 Years). He suffers from what we believe is Intermittent Explosive Disorder. We call this part of my husband Rob. This angry, arrogant person is the complete opposite of my husband. He’s very aggressive, verbally abusive and always wanting a fight. He never listens to reason and is very good at seeing your weak points and turning them against you. He’s the most spiteful person you will meet. He can be violent, like hitting walls, bashing furniture and throwing things (like cups and glasses at walls, etc), although I should make it clear though that he has never and never would hit a woman. It can be like flipping a switch, but you never know where the switch is or if it will trigger anything.

I would honestly have to say this is the most difficult, frustrating and confusing part of any of my husband’s mental health problems I have to deal with. Unlike his anxiety and panic attacks which I can usually deal with, this darker side of my husband is something I really wish I could just walk away from … but I can’t.

My husband was diagnosed with the Cluster B Personality Disturbances with Rage Control issues. Basically this means my husband is not constantly like this, but flips in and out - which sort of makes things difficult for both of us to cope with to say the least!
Yes, knowing my husband has Cluster B explains some of his problems but not all of them and having a label on it doesn’t make having to deal with it any easier. 

Cluster B Personality Disorder includes:-

Antisocial Personality Disorder: characterised by an ignorance of the entitlements of others, the absence of empathy, and (generally) a pattern of consistent criminal activity.

Borderline Personality Disorder: extreme ‘black and white’ thinking and long term unstable emotions – particularly when involving relationships, identity and behaviour. These feeling can lead to both self-harm and impulsive behaviour. 

Histrionic Personality Disorder: attention seeking behaviour that often includes inappropriate seductive conduct and superficial or inflated emotions.

Narcissistic Personality Disorder: characterised by the consistent need for praise and admiration and a belief that they are special and ‘entitled’. Extreme jealously, arrogance and a lack of empathy are also usually present.
 

Since 2011 my husband has been seen by 5 different psychiatrists (including 2 neuro-psychiatrists) and 3 psychologists, some of whom said they couldn’t make a full assessment of my husband because of his rage control issues. But they have suggested that my husband also has “prolonged” PTSD - which if you saw what my husband has been through does make sense (since he was a kid he’s had close friends die, his 1st marriage broke down, several near death motor bike accidents, etc ….). 


So, how has all this affected my own health/mental health? Well I’m on medication for anxiety because I have stress induced migraines. I have also developed something called Vasovagal Syncope, which basically means if I get too stressed I can pass out. I also suffer with depression and OCD, which gets really bad when I get stressed out.
I have also been diagnosed with Fibromyalgia, which I am currently not even being treated for, which is frustrating. I also experience hallucinations, which I’ve been told are caused by stress as well. Unfortunately with the life I have there’s no easy way to have less stress in my life…. 

I do struggle to take care of my husband, especially with the mental health conditions and I do sometimes wish someone else would take over. Then I feel guilty for wanting a normal life and I also ask why all this happened to my husband!? Yes, it’s difficult for me, but just imagine being my husband having to deal with all those different parts of himself and struggling to keep the dark side of himself from coming out and sometimes it will come out and there’s nothing my husband can do to stop it. He then feels all the guilt for whatever he said and did (he doesn’t always remember) … and all this on top of his physical health problems. He is basically having to battle with himself everyday and some days he doesn’t win. 


Last year, after being bounced around psychiatrists and psychologists (because all his physical problems are apparently in his head!), we were eventually given some couples therapy. Why? Because being my husbands carer and having to deal with his physical and mental health conditions has put a tremendous stain on our relationship. We’re both grateful we received this, but my husband desperately needs help with his rage control issues. We were told to contact Mind, but unfortunately they no longer offer help for this. 

So what next? I really don’t know … but what I do know is that my husband needs some professional help with all his mental health conditions, but sadly I don’t think he’ll ever get it on the NHS. 

Sometimes I look at my husband and don’t even recognize him because of what his mental health has done to him. If he has a good day I get a glimpse of the man I fell in love with, but unfortunately those days are very few - which is sad and makes me want to cry because I want my husband to be the way he once was …

Zoning Out And Depression

I have supported my friend with her depression for about 4 years but one aspect of the depression that I was not expecting was her dissociation, or as we call it, zoning out. It has been an ongoing problem for the last couple of years and happens most days, for different periods of time. It is a defense mechanism where her body appears to shut down to a certain extent when she is getting particularly worked up, stressed, anxious or sad. We have since found out that this is actually quite common in people who have depression.

When my friend is zoned out she is still able to do things but she has no conscious recollection or control over what she does during these periods. She can be zoned out from a matter of minutes up to around 12 hours. We are still unclear what she does during these periods however we know she wanders and regularly ends up in a place where she does not know, often quite dangerous places, like on a bridge or railway lines, but also in very peaceful places. She has spent nights outside without appropriate clothing, money or her phone. This makes her incredibly vulnerable and has been very challenging not only for her but the few of us who are supporting her as well.

The doctors have been unable to help with the dissociation and therefore this is still an ongoing problem in which we do not know how to resolve. It is also having huge impacts on her treatment as she gets anxious about appointments, zones out and misses the appointments which then leads to her being discharged from treatment groups, therapy sessions or just never actually being able to attend them. Due to this it means that her overall treatment has really been halted until this issue is sorted.

When my friend first started zoning out it was truly awful. None of us knew what it was and she was so distressed each and every time she came around from it. She would ring us up from a location that she often did not recognise and we had to try to calm her down and get her safely back home. She was petrified at the lack of control and not understanding what or why it was happening.

As friends and onlookers of the situation, it was, and still is a very stressful experience. When we did not understand what dissociation was we would get extremely worried and panic about why our friend was not responding to our endless texts or phone calls or why she was not doing anything on Facebook. It was not like her at all. For hours we would keep texting each other hoping and praying that our friend had contacted one of us. We would call her housemates to see if she was home and we would check news sites just incase this was it and she had gone ahead with killing herself.

Then all of a sudden we would get a terrified phone call, she had come around and was confused, alone and had no idea where she was. We would all be relieved to hear from her but it was so challenging trying to calm her down and reassure her.

The more she zoned out the more used to it we all got. We learnt ways to try to track her and got better at calming her down and getting her back safely. However, the more we knew the more we had to worry about. We knew she was wandering, often at night around a big city by herself. We did not know what state she was in when she was like this and we were constantly worried that someone would take advantage of her. We were also concerned as she often went out without coats or shoes. When she came around she would be freezing and sometimes unable to speak due to the coldness. Sometimes she did not have her phone or money with her so we either did not know about it until she returned home or we would often have to try and get her home for free if she had no money.

She also possessed a risk to others as when she zoned out she would stop whatever task she was doing and leave her property. This meant that she regularly left the gas on, food in the oven, and left the door to her property wide open or with keys left in the lock. This was a huge concern for her housemates as they did not know what state the house would be left in or how safe they were there.

The most worrying thing was that she sometimes found herself in dangerous locations. This combined with her coming around confused, distraught and angry that she has zoned out again provided a very bad combination and put my friend at a lot of risk. Although we could track her to some extent she often disappeared and this meant we had no control over helping her.

One slight positive was that although she would sometimes turn up in dangerous locations, she would also regularly turn up in very peaceful locations. It was almost like her body shut out all the stress and went to find somewhere to calm herself down. We felt that the zoning out took her away from danger in one respect as it would occur when she was working herself up and likely to harm herself and then by the time she would come around there was a possibility that she would be exhausted and just want to get home. So in one way it saved her from the potential risk she caused herself but in other ways it put herself and others in danger.

About the Author:

Mu has struggled supporting her depressed/suicidal friend over the years and decided to start up a blog to share her experiences and highlight what supporting someone with a mental illness is really like. 

Twitter: twitter.com/MuMoody

Facebook: facebook.com/mumoody

Blog: moodymu.com

Email: mu@moodymu.com

Submitted by - Mu (mu@moodymu.com)