In Sickness and In Mental Health

How my husband looks today

Our Wedding Day

 

My husband before he became ill

The following blog post was originally written for Men Tell Health after they had seen another blog entry I had written YEAR OF HOPE 2015. They asked if I could write something for them, about caring for my husband who has developed mental health issues/conditions.

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 1^st 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 ..

Let's go out for a meal!

Recently me and @#raspberrytalk celebrated our 9th wedding anniversary and #raspberrytalk decided we should go out for a meal. We were staying with Raspberrytalk's dad in Scotland, who had his 70th birthday earlier this year. I will be 40 at the end of this year so #raspberrytalk thought it would be great to do a combined double Birthday and anniversary meal, which I thought was very sweet of him.
But, as always, at the back of my mind I was worried that while we were out he may have a seizure, panic attack or, worse still, Rob might come out to play which would not be a good thing to happen in public!
Actually Rob coming out to play is never good. I never know how to respond to him because no matter what I say he ends up verbally attacking me.

Anyway we found a nice hotel restaurant and, because it was mid-week, I thought it would be not too busy ... which luckily it wasn't.

Raspberrytalk's step mum made the booking for us and when we arrived they showed us the table reserved for us which was, typically, slap bang in the middle of the room.
#raspberrytalk likes to sit with his back against a wall and be able to see the exits. This is not a new thing as he's always been that way since he was young. But recently with his onset of severe anxiety issues and mental health issues, a small matter like this can often set off a serious panic attack or worse!
However, his step mum was already on the ball before I could even say anything and she immediately turned to #raspberrytalk to ask where he'd prefer to sit. This was great because I could see that he'd already started to tense up as soon as he'd spotted the "reserved" sign on the table. He had a quick look around the room and chose a table in the corner and I could feel he had started to relax and calm down.

So we got seated at the more suitable table and it was relatively quiet. All seemed o.k with #raspberrytalk, but it wasn't long until his body decided it was not going to work properly.
It started with his arms. The muscles were already hurting and arms were shaking, when they suddenly decided not work at all (muscle paralysis). They dropped to his sides and he couldn't move or feel them. After a few minutes they suddenly jerked up and started working again, but his right elbow was locked. His shoulder worked, his wrist and hand worked, but try as he might he could not bend his elbow.
While all this was going on I was talking to #raspberrytalk and he was worried that I would have to feed him again as sometimes happens at home, but we were in public in front of his Dad! He was getting very upset, frustrated and embarressed and all I could do was tell him not worry and not to get too upset if that was going to be the case. I got up and just hugged him and he started to feel better.
I can't even begin to know how #raspberrytalk feels when his body does these things, I just know that he looks scared and I'm scared for him. And I'm also very frustrated because there's nothing I can do.

Eventually Raspberrytalk's arms decided to both work properly again, just in time for him to have his starter, which was a relief to me and to #raspberrytalk. I know how embarrassed he gets when I have to feed him.

We were having a very nice evening, chatting and laughing and #raspberrytalk managed to have his starter and main course before his body once again started to not work properly.
This time it was his eyes that decided to play silly buggers. They very suddenly became extremely sensitive to light. I have migraines so I know just what it's like when you become sensitive to light and I was worried that #raspberrytalk was going to have a seizure. Sometimes he becomes extremely sensitive to light and sound just before having a seizure and we've learned to use it as a pre-warning. But luckily on this occasion it wasn't the case and after I gave #raspberrytalk another cuddle and shielded his eyes for a bit, the sensitivity to light went.

I don't want to sound selfish or horrible, but I do sometimes wish these things didn't happen, especially when I'm trying to relax. Unfortunately these things happen randomly, which is one of the hardest things to deal with. At least if there was a pattern I could handle things better and work around them, preplanning what we can and can't do and where we could go.
But this is not the case and we are both slowly learning to deal with things as they come. We're both still trying to come to terms with what's happening to him and #raspberrytalk is still trying to accept that there are somethings which he simply can't do any more. His mind is willing, but his body is just having none of it! lol
I just sometimes wish I could take five minutes to relax and not be on red alert constantly. I know this sounds horrible, but it's how I feel ... and I feel guilty for feeling like this, which just adds to the stress! I'm sure other carers out there must feel the same, especially carer's that look after people with invisible illnesses.
But there are no magic wands to make it all better - hence the blog! My opportunity to vent some of my frustrations ... and hopefully give some peace of mind to anyone else out there feeling some of the same things.

I would like to thank Raspberrytalk's dad and step mum for all their love, support and kind words they've given us over the years ... and for putting up with us both!

Take care of each
Carer's Vent

SEIZURES

Some of you may remember my blog entry 6th-september-2012-we-had-a-somewhat-interesting-shopping-trip-in-morrisons/. Well my hubby has had 2 more days like this.

 

On 2^nd October 2012 my husband was having his normal acupuncture session at Broomfield hospital. For some reason the Pain Clinic thought he would get some benefit from it. Well at his 1^st session he almost passed out, which does sometimes happen apparently. Anyway we agreed to give it another go and the next 2 sessions went without a hitch thankfully, but his 3^rd session did not go so well…

Within a few minutes of the needles being put into his neck I could see he was not feeling well. I asked if he was feeling faint and sick and he replied yes. I went to reception and found a familiar face, a nurse called Suzie; she had previously helped my husband when he nearly fainted a few weeks earlier. She got someone to find Ed the guy that puts the needles in my hubby.

By the time Ed and Suzie came into the room my hubby was feeling a lot worse. Ed took some of the needles out but this did not seem to help. He had to take all the needles out, but by this time hubby was worse and ended up collapsing to the floor. Usually I’m the one that has to steady him, but on this occasion Ed and Suzie managed to ease my hubby to the ground.

But this was not the worse thing to happen. While hubby was on the floor he started to go into what all the medical people were calling a seizure. Me, Ed and Suzie tried our best to make sure my hubby didn’t hurt himself, we also spoke to him calmly. After a few minutes of us doing this, can’t remember who, but someone got a medical team which included a doctor. I cleared the way for them while they worked on my hubby. Again my hubby had to be given oxygen, it always scares me seeing him having to have that done. The medical team also gave him an injection of something to calm him and even scarier they ended up giving him a glucose drip. They also checked his blood pressure and blood sugar levels. His blood pressure was very high and his blood sugar was very low. Which was weird, considering he’d had breakfast. I always make sure he’s eaten before we leave the house. I also carry a bag that has water and cereal bars in it, I even have a mini first aid kit.

While all this was going on my heart just felt like it was going to jump out of my chest. I also felt like just crying with frustration. While my hubby was having the seizure he looked like he was in pain and scared. I’ve spoken to him about this and he says it “does hurt a bit”; he’s very good at playing things down though.

Anyway, the medical team decided to send my hubby to A&E. By this time hubby’s seizure had stopped, but I thought it was a good idea as we were already in the building. Also because the seizure had lasted more than 5 minutes it was a good idea. They rolled him through the corridors on a bed with me and a nurse running along beside it. While in A&E hubby had his blood pressure taken again and the doctor gave him a very quick check over. His blood pressure had now gone back to normal, so once the whole drip had gone into his arm they were happy to release him. I know the hospital was probably busy, but I think they should have done more intensive checks on him – at least some blood tests – especially as this was the second time this had happened to him.

Hubby in A&E                                                                                                                          

So we went home and just tried to relax. Hubby was exhausted and I was too, mainly with mental exhaustion. I had hoped when this happened a month ago in Morrisons that it was a one off.

The next day (3^rd October 2012) we had to get some shopping. Hubby was feeling like his normal wobbly self and said he was ok to go out. So we went to Morrisons. When we first got there hubby had bit of a panic attack while I was in the toilet. When I came out he was in the corner breathing heavily. As always I reassured him that he was safe and I wouldn’t let anyone hurt him. He seemed to calm down and all seemed to be going well. We had gotten everything off our shopping list and were now just browsing. Hubby loves cooking and likes to see what bargains we can get. Before he got ill he used to cook and bake a lot, now he just tries to teach and supervise me (in HIS kitchen!).

While we were walking around the shop, hubby’s legs had been very shaky and he’d been feeling a little lightheaded. While we were down the cooking ingredients aisle hubby stopped in his tracks and started to feel really dizzy and shaking. Unlike last time, loads of people asked if we were ok. At first I thought we would be so I told everyone we were fine. But then I could see that hubby was worse than he was letting on and was about to fall to the floor. Hubby kept saying “I’m ok, I’m fine” and I kept saying “No, you’re not. You’re going to go over any minute now”.Just at that point a nice older lady asked if I needed some help and this time I replied “Yes, can you get a first aid person”?

As she went off to get someone I felt hubby’s body start to collapse. I pushed our trolley to one side and did my best to slow his fall as he collapsed to the ground. As I was easing hubby down I shouted out “oh shit!” and when I landed on the floor I bashed my knees and legs.

My legs after having an argument with the floor in Morrisons.














I know I should have made sure I was safe, which I was, but I couldn’t stand there and just let my hubby collapse on the floor. I don’t know if I do it correctly but I get behind him and put my hands under his armpits and try to take some of his weight and ease him to the floor.I don’t know where I find the strength to be honest, but I somehow do.

Don’t know how it happened, but hubby managed to hit the floor in the recovery position! Very strange.

The security guy in Morrisons came over to me and asked what was going on. By this time hubby was having a seizure just like the day before and even though I’d seen this before, I was still shaking inside and terrified for my hubby. It wasn’t long until I saw a familiar face. It was James from the meat counter, who is a first aider. It was a relief for me to see someone I sort of knew, James was the guy who looked after us last time.

We made sure my hubby was safe while he was having the seizure and like last time James called for an ambulance. The seizure must have lasted at least 20 minutes and while waiting for the 1^st response unit, I just kept talking to my hubby calmly. At one point my hubby started to have a panic attack while still having a seizure. He became terrified at the sight of the security guard’s boots and all the people around him. He kept grabbing hold of me and hiding his face in my lap and trying to hide behind me (while still lying on the floor).

This carried on for a while and then just stopped. My hubby started shouting and punching the floor and then had yet another seizure. This one didn’t last as long thank god, but he was also clawing at the floor tiles – I thought he was going to rip his nails out.

The 1^st response guy had now finally arrived and when he asked me questions I nearly couldn’t answer because I was just so mentally exhausted, but I finally managed to give him the info he needed. Again hubby’s blood pressure was checked and was high and blood sugar low, but what was even stranger was how, when the 1^st response guys did hubby’s blood sugar, the blood just shot out of his finger and was just like water. I can still remember seeing blood run down my hubby’s hand (the day before in the hospital they had to try twice because they couldn’t get any blood out!). Hubby had yet another short seizure and then just lay there staring at the ceiling, looking a bit out of it. We all just sat with him, the paramedic asking a few question until hubby was feeling a bit better. Then we all helped him to a sitting position, then to his feet and we hobbled over to the café for cup of coffee while the paramedic continued to observe hubby to ensure he was really ok.

Hubby was saying he felt fine, but I insisted that they still take him to the hospital. He eventually agreed and the paramedic called for some transport. I would not normally have insisted on this, but this was hubby’s second seizure in row.

We sat waiting in the café, drinking coffee and hot chocolate (free! Result). The paramedic said it would be quite a while because the A&E was really busy that day. Ross and the paramedic discussed if it was really worth going, apparently all they would do was the same tests the paramedic had done on site and observe hubby. So we ended up not going to hospital, but the paramedic said he would follow us all the way home to make sure we were ok, which was very nice of him.

I was so thankful to be going home, because I was again feeling exhausted and so was hubby.

At the moment we don’t know what is causing the seizures. Hubby has had an EGG, which we are going to get the results for on Monday when hubby sees his doctor. I will keep you all posted.

I would like to this opportunity to thank all the people on the Facebook groups, James and Richard (security gaurd) at Morrisons Witham, Suzie, Ed and the Medical Team at Broomfield Hospital who attended to my hubby.