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 ..

Flu Jab refused

Last Friday me and @raspberrytalk booked in our flu jabs which as far as we are both concerned are eligible for them.  

This is who the NHS say should be eligible for the flu jab.  

As most of you will know @raspberrytalk has ME and Fibromyalgia. 

When we went in on Tuesday 5^th November the nurse politely explained to @raspberrytalk that she had been told by the practice manager that he was not eligible for the flu jab. WTF is almost the words I said to the nurse. @raspberrytalk was bemused and asked why this was the case and she replied that he doen’t have any neurological conditions or an immune system problem!

He then had to explain to the nurse that he has ME and Fibromyalgia, which are both Neurological disorders … and we then discovered that neither of them, nor his arthritis or seizures are listed as “active” problems on his file! 

As far as me and @raspberrytalk are concerned he should be eligible for the flu jab, but the nurse said that none of that information was on his records and she then explained that  even if it was, the surgery do not recognised the fact that ME and Fibro are neurological disorders. She also said that @raspberrytalk’s latest blood tests showed that his immune system is currently normal, so he wouldn’t get the jab because of that. 

 

Well at this point I was very pissed off and so was @raspberrytalk to say the least.

Anyway I had my jab done. 

@raspberrytalk explained to the nurse that he was concerned about the overall care he could expect to receive from the GP’s at the surgery if they don’t consider ME as neurological (i.e. they think it’s all in the mind).

I am also concerned about this as @raspberrytalk’s ESA renewal is coming up very soon. As most of you will know it was a real battle for him to get any kind of benefits.

If we don’t have the support of our GP and other health professionals, what hope is there for us?

It feels like we are fighting a battle that we will never win and it’s a battle we are fighting alone ………… 

We have been invited in by the surgery to “discuss our concerns”(!) I will update you all on this.

 

Take Care of Each other

Carers Vent

 

If like @raspberrytalk you have ME or Fibro and been refused flu jab please contact me on @carersvent

 

UPDATE: 7th November 2013

 

spoke to our GP and apparently according to the records they received from our last surgery there is no record of @raspberrytalk being given a 100% confirmation that he has ME or Fibro.

 

Also the only active problem on his records is his mental health problems and nothing about his arthritis which is a active problem.

 

really not sure where we stand or what we can do any advice would be welcomed.

GUILT

Being A Carer

Me and @raspberrytalk on our Wedding Day

So when my raspberrytalk's health started to decline, I automatically became his carer.
Why did I do this?
well at the time i thought i would be the best person to do the job because me and raspberrytalk are so close and i've known him for over 17yrs.



Me and Raspberrytalk a few years before his health started to decline.

What I never realised at the time was what a toll being a carer would have on my emotional well being. I also never realised it would have such an impact on my general health too.

Because both raspberrytalk's physical and mental health conditions are so up and down,I never know what one minute/hour/day is going to be like. family and friends tell me to try and relax more, but it's hard to do when you just don't know what is going to happen from one minute to the next.

Don't get me wrong, I did know being a carer would be hard but I never thought it would be as hard as it actually is! lol
I'm sure there are many other carers that feel the same way and find themselves feeling guilty because they want a break.





This week me and raspberrytalk thought about going to the cinema. we don't often get out and we both really want to see the new Simon Pegg & co movie, The World's End.
As we walked from the car park to the cinema we noticed a lot more children than usual hanging about ... and then I remembered the summer holidays have started!
well as soon as I saw how many people where queueing up inside the cinema I knew it would be a problem. Since his health has declined raspberrytalk has not been able to do crowded places because of his mental health problems. So we decided not to go into the cinema because it may have caused raspberrytalk to have a panic attack.

Raspberrytalk doing what he loves January 2010

yes I was frustrated but I have to think of raspberrytalk's health, whether that be his mental health or physical health. Having to deal with seeing raspberrytalk's physical decline is frustrating and emotionally draining enough, but on top of all of this i'm having to see his mental health decline as well.
People ask me how do I cope? And you know what? I don't know if I am truely coping. My reply is usally "you've just got to get on with it because it's the cards you've been given".

being a carer is one of the hardest things to do because, if like me you're caring for someone you love, it can be emotionally draining and there are times when you just want the person/life to be how it was before that person's health declined.



I still think there is not enough help out there for carers, especially for carers that are having to deal with mental health issues.

like i said earlier, my own emotional well being has been effected. i have to take pills to help balance me out but, even with being on them, i still feel like screaming/crying most days.
why do i feel like this? because i am watching someone i love go through pain everyday and watching the person i met years ago slowly slip away. And that's the hardest part of all.

 

       

take care of each other
carer's vent

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

Same S***, Different Day....

it seems as soon as I start to relax a bit and stupidly think my husband is not going to have some kind of spell ...

... he has a spell! Luckily we were at home and there were other people in the house to help. I just popped to the toilet and while I was gone, Raspberry being Raspberry, decided to "help" by going to the kitchen to start making us all some drinks. I came back and went to the kitchen to check on him ... only to find him half passed out on his perching stool, leaning back against the fridge gasping for breath! Thank God his stool was there (thank you Social Services!)or my husband would have ended up on the floor - or worse still, he could have badly banged his head on the floor or worktop on his way down!

The thing is, he could have been there for ages. I only walked into the kitchen to check on him because I sort of sensed that something was wrong.

This is something I've seen many times before, my husband collapsed with exhaustion, but I can usually get him over to the sofa or the bed before he's completely gone.
This time however, my husband's whole body simply decided it was not going to work anymore. As I was checking he was ok and still conscious he slumped forwards and his whole dead weight fell against me. I couldn't move him and just had to stand there bracing his entire weight on my legs ....ouch!!

Luckily, just as I was sure my legs were going to buckle, my husbands mother noticed what was going on and could see that my legs was shaking with the strain of holding my husband up. She quickly called to my husband's step dad who came running in and rescued us both. As he took my husband's weight he turned to me and said "He's bloody heavy, isn't he!?".

My husband was now completely unresponsive and he still couldn't move either because of the muscle paralysis, but he was still awake because his eyes were open and he remembers it all clearly. No matter how many times I see this happen it still scares me.

A few minutes later my husband suddenly jerked upright on the stool and became semi responsive - almost as if half asleep (or very drunk! lol). We managed to get him to his feet and move very unsteadily into the living room and sit him in a chair. Unfortunately, within a few minutes of him being put into the chair he slumped down and started to have a seizure. I tried my best to keep him safe and keep him in the chair, but as his entire body was flexing and thrashing about because of the violent nature of his seizures, he slowly slid down the chair and ended up on the floor.
I asked his step dad to get some water because I know when my husband comes around he will need a drink. These seizures are very muscular in nature and always leave my husband completely drained as if he's just run a race. He is also usually in great pain afterwards with several pulled muscles.

At one point while my husband was seizing, I looked at my mother inlaw and could see a mix of fear and frustration in her eyes. She turned to me and said "They're getting worst aren't they?".
It's sad to say, but after my husband had stopped seizing and we'd managed to get him back into the chair, I had to tell her that what she saw was not the worst and in fact it was quite a small attack. I held her hand and asked if she was o.k (stupid question, I know!) and told her "I know it's scary to see but he's o.k now".

Typical of these seizures, my husband was now completely back to normal (aside from a few pulled muscles and being exhausted) and I got the pair of them to hold hands ... it was all I could think to do.

So there you go; Same s***, different day ... but at least this time I had extra support and someone to actually help me move my husband (Thank You!!).

I hate that this is happening to my husband. And I really hate to say it, but when he has his spells it's not just him they affect. I'm also drained afterwards, but it's more emotionally rather than physically. I feel selfish when I say it, but my husband says I shouldn't be so silly. He says "of course you're drained. You have every right to be and shouldn't feel bad for feeling like that. I wouldn't wish having to deal with all this/me on my worst enemy!".

Then we both usually get upset, there are "I love you"s and even tears because of "all the pain" we're causing each other ... and it all becomes very slushy, damp and emotional, lol

Take Care of Each Other
Carers Vent

WHO? WHAT?

When you think of someone being a carer most of us will automatically think of someone that has to do everything for the person they care for, including wiping their bum. Some of us will also think of a carer only having to help with physical needs and not necessarily there emotionally and mental needs.

Part of the reason I'm writing this blog entry is because I would like to bring awareness of the different kinds of carers that are out there. Also to bring awareness that carers themselves come in different shapes and sizes ... lol.
But on a more serious note, some carers are children, some are old and some are like me, fairly young. Some, if not most, even have their own health problems.

Most people will not realize that I am my husbands carer, because at first glance it looks like I just help him walk. What they're not seeing is on a daily basis I have to take care of his emotional well being as well as his physical needs (which are more than helping him to walk, I have to help him in and out of bed, help bathe him, assist him getting his clothes on and off, etc, etc). There is a lot more than this I have to do, too much to mention here, but there are other carers that do even more than I have to do. But unlike me, some carers don't have to look after someone else's mental well being ... and like thousands of others this is actually the thing I struggle the most with.
When I first saw my husband have a major panic attack it scared the life out me. But as I always do, I did my best to take care of him and put how I was feeling aside.

So as you can see and if you saw the blogs on carersweek you would have realized that not one carer is the same as the next. I never realized it when I was younger but my nan was my grandads carer I remember as a teenager helping her put my grandads wheelchair in the back of their car. I'm sure there was so much more she had to do for him, but I either didn't see it or realize it.

I have to admit it took me a while to realize I was actually a carer. I even made a list once of the things I thought I did for my husband and showed it to him. He laughed and spent the next 10 minutes adding all the things he could think of! I think this was when I realized properly that I am a carer and not all carers are the same.

When you think of someone that needs a carer you'll probably think of someone in a wheelchair or child/person with severe learning problems. You may or may not be surprised to know that this is not always the case.

There are hundreds of thousands of people out there with invisible disabilities. For example, mental illness. You can't see it but many people with it need a carer. My husband has several neurological disorders which you can not see, as well as mental health issues. He also has arthritis through all his body, but you can't see this ... but this causes him severe pain. His neurological problems cause him a whole host of problems, including seizures, extreme exhaustion, muscle paralysis ... the list just goes on.

There are so many people out there with invisible disabilities that are treated so badly by society in general and are judged because on that certain day there not using their wheelchair/walking stick and are parking in a disabled bay. Just recently a young lady in America was left a note on her car, left by someone who could not see the Cystic fibrosis the young lady has!

When most people see my husband they don't realize the pain and the struggles he has to go through everyday.

Personally I think there needs to be more awareness made of invisible disabilities and the fact that not one carer is the same as the other.

take care of each other
carers vent

CARER'S WEEK



www.carersweek.org

 

My story by Samantha Campbell



Me last year (@raspberrytalk took the picture)



 

 

  

I am in my late 30’s and my husband is in his early 40’s. I never thought I would ever have to be someone’s carer, especially my husband’s.  

I started to have to care for my husband a few years ago. It started of with me helping him up and down stairs every now and then, but as my husband’s health got worse my care role became more. Now I have to help him in and out of bed/chairs, help him wash in the shower, get dressed, etc. Because he’s unstable on his feet I assist him while he uses a stick to walk. I have to help him up when he falls, make sure he’s not hurt, etc, and reassure him when he’s having panic attacks. I even have to restrain him when he’s trying to hurt himself. When he’s having really bad shakes or suffering from muscle pain and/or paralysis I have to help him eat/drink because he can’t hold his knife and fork, cups, etc.

Due to the extreme exhaustion and pain his ME and Fibro cause after even the smallest amount of excursions, its also down to me to do all of the cooking, cleaning, washing … even cutting the grass, etc.

There are several different reasons why my husband stumbles and falls, too many to mention here, but below you will see a list of my husband’s health problems/conditions. 

  

Here’s a list of my husbands health problems/conditions:- 

q       Myalgic Encephalomyelitis (ME)

q       Fibromyalgia (FMS)

q       Non Epileptic Seizures

q       Several displaced vertebrae in his neck

q       Dehydrated muscles in his neck and left shoulder

q       Cervical Spondylosis (coupled with the above this also causes numbness in his arms with painful tingling in extremities and muscle spasms)

q       Thoracic Spondylosis

q       Chronic pain in lower back, the cause of which is still being investigated. This also causes muscle spasms and extreme pain in right and left buttock and legs.

q       Osteoarthritis in both knees

q       Osteoarthritis and limited mobility in left foot caused by his left foot being shattered in a motorcycle accident in 1994.

q       The side of the foot was also torn off (replaced with a large skin graft from his thigh), tendon and major artery severed and the big toe partially severed.

The above causes him constant severe pain and his knees often buckle causing him to fall. He also has a neurological problem that makes his head think the floor is the wall and causes him to fall backwards without warning.

He also suffers from Anxiety, Depression, Agoraphobia and gets really bad panic attacks, mood swings and weird attacks that leave him hyperventilating, drenched in cold sweat, heart pounding, vision blurred, dizzy, disorientated and unable to move (these are different from his panic attacks). His ME can cause sudden onset of extreme fatigue and/or muscle paralysis which will cause him to fall very suddenly. 

My husband recently saw a consultant Psychiatrist and he added to the list with a diagnosis of: 

q       Conversion disorder (non epileptic) seizures

q       Panic disorder

q       Mixed personality disorder 

Everyday tasks that most people my husband’s age take for granted, like getting dressed or having a shower, are just a few of the things I have to do for him. Not only do I have to help my husband with these kinds of tasks, I also have to be there for him emotionally as he has mental health problems as well. 

I could give you more examples of what I have to do for my husband but I think you all get the idea.

Being my husband’s carer has changed things for us both and even with the strong relationship we have, caring for him has had a strain on it. I know he resents the fact that he needs help and is constantly frustrated and I sometimes wish he was back to his normal self before he got ill. Since he became ill he has changed as a person and this is the thing I find most difficult to deal with. I do get glimpses of the man I fell in love with and that is one of the main reasons I stay.

We still have a romantic relationship, but it is different. I can’t explain it, but it’s just different. I don’t know if that’s how it is for my husband, but that’s how it is for me.

Some days it’s like living with a friend rather than a husband, especially when he is having an extremely bad day. Sometimes I think maybe I should not be his carer because I am so protective of him and so close to him. But on the other hand, maybe I am the best person to take care of him because I know him so well and I do and will notice changes in him. This is not to say that some days I don’t just want to walk away and not come back. I think it’s quite natural for anyone forced into this sort of situation to feel like that.  

But it also felt almost natural for me to become my husband’s carer. I’m told I have a caring nature to me anyway, but I never thought I would end up being an actual carer. Being a carer has affected me in so many ways; some good and some are bad.  

It has shown me that I am a strong person and I am capable of dealing with certain situations, like when my husband is having a seizure. Sometimes when I read through my blog, I almost forget it’s me and think “how does that poor woman cope with all that going on?” and then realize it’s me! 

But on a more negative note, my husband’s health and the fact that I’m his carer has taken its emotional toll on me. I have always suffered with depression and seeing my husband’s health get worse and just having to process everything has done my head in a bit. 

I don’t want any of you to read this and feel sorry for me. Yes, I had little choice at first in becoming my husband’s carer, but I have chosen to stay his carer. 

So why did I want to share my story for Carer’s Week?

I want people to know that a carer can be anyone of any age/background and becoming a carer can happen to you suddenly, like it did for me. I also want people to know that, yes, being a carer is hard and you may think you can’t or would never be able to do it, but you can do it because like me you will find an inner strength.  

CARERS WEEK

CARERS WEEK SHOP

CARERS UK

Me talking about filming Raspberry's seizure

 

Talking about The Raspberry's fall

 

Having to explain myself :-)

Interview With A Raspberry

Hi everyone. Well today we have a special interview the person you all know from my blog as “Hubby”, AKA The Raspberry (@raspberrytalk). Hopefully it will give you all a little insight into how he feels about things and is dealing with what is happening.

We’ll also be hearing from my alter ego, Samantha, Raspberry’s wife and full time carer. We’ll take a look at some of her inner thoughts and fears.

Hopefully it will make you laugh and cry but, most of all, let you know that you’re not alone; not the only one that is scared and that it’s ok to be worried – as a carer or caree – and its ok to have doubts. 

These are the things that push us to keep going. Remember - Without darkness, we can’t appreciate the light.  

So let’s jump straight in:-

 

 

Where did the nickname raspberry come from?

Ah yes, that is courtesy of my older brother. Long story short; my wife and I were taken to dinner by my brother and sister-in-law, along with my mum and father-in-law and a friend of my brother. Their friend, my mum and me all use walking sticks and my brother jokingly said “oh god, we’re taking all the raspberries out”. I had no idea what he meant until he explained:-

“Raspberry Ripple = Cripple”. 

 

I thought it was hilarious and so I nicked it. Some people find it offensive, but hey, I’m the one with the stick, so bugger off! :-) lol

 

So Samantha, what do you think of your husband’s new nickname?

Like my husband I find it very funny. Also you have to understand when Raspberry’s brother said it, it was said with humour and I also think it’s his way of dealing with it.

 

What health problems/conditions do you have?

Well, how long have you got? Hehehe. 

Ok, I’ll try to keep it brief and just summarise. I’ll start at the top and work down.

I have:- 

• A 23 year headache. Seriously! I’ve had a constant pain in my head, usually near the back, but often like a gentle vice grip on the top of my head. It moves around, but it is every … single … day! :-( I generally ignore it as I’ve become used to it over the years.
• Several displaced vertebrae in my neck.
• Dehydrated muscles in my neck and left shoulder.
• Cervical Spondylosis (coupled with the above this also causes numbness of left arm with painful tingling in extremities of both arms).
• Thoracic Spondylosis.
• Chronic pain in lower back, the cause of which is still being investigated. This also causes abnormal shaking of my legs and back, muscle spasms and extreme pain in right and left buttocks and both legs. My right and left arms and hands have also both started to shake.
• Osteoarthritis in both knees.
• Osteoarthritis and limited mobility in left foot caused by my left foot being shattered in a motorcycle accident in 1994. The side of the foot was also torn off (replaced with a large skin graft from my thigh) and the big toe partially severed.
• The above causes me constant severe pain and my knees often buckle causing me to fall. I also have a neurological problem that makes my head think the floor is the wall and causes me to fall backwards without warning.
• I also have ME and Fibromyalgia and these cause a whole host of symptoms from minor to extremely serious and excruciatingly painful – look them up :).
• On top of all that (or maybe because of it!) I suffer from Anxiety, Depression, Chronic Insomnia, Agoraphobia and get really bad panic attacks, mood swings and weird attacks that leave me hyperventilating, drenched in cold sweat, heart pounding, vision blurred, dizzy, disorientated and unable to move or speak properly (these are not the panic attacks. These are different).
• Since May(ish) 2012 I have also been having Non-Epileptic Seizures on a regular basis.

I recently did a sleep study at Papworth Hospital in Cambridge. I’m normally awake most nights until 3 or 4 and when sleeping I normally wake several times throughout the night.

So of course at the clinic I fell asleep in 8 minutes and had the best nights sleep I’ve had in ages. Typical!! 

BUT - I seem to have stumped the doctor and will be invited back for further study. I appear to have some symptoms of narcolepsy, but some that completely contradict a diagnosis of narcolepsy.

I slept without waking for 6 1/2hrs ... but never once reached REM/dream sleep (the human brain usually runs on a 40 minute-ish sleep cycle - light sleep, deep sleep, dream sleep and round again every 40 minutes or so).

The nest day they did nap tests throughout the day. I had to lie down and try to relax/fall asleep for 20 minutes or so. I jumped light and deep sleep and went straight to dream sleep all 4 times - without even realising I was asleep!!!

Apparently this is not right :-) 

Anyway, the doc was very interested and wants to do some follow ups. Hopefully this will start to pull some threads together. 

I know all of that sounds like a lot when it’s written down, but I have a hell of a lot less going on than some people, so I’m grateful for that.

 

 

 

Samantha, do you have any health problems of your own?

Yes, but not as many as Raspberry. I also suffer with depression, so I can completely understand what he’s going through. I’ve had anxiety issues, so I can also understand that. I even sometimes give hubby advice on how to deal with certain situations.

I have Migraines which I’ve been told by a neurologist are stress induced migraines.  

If you read the following blog entry it will tell you a bit more about my health problems:-

http://carersvent.blogspot.co.uk/2012/11/easier-said-than-done-full-story.html

 

Raspberry, when did you first notice signs of your health declining?

That’s a difficult one. Obviously I did a lot of damage to myself when younger from motorbike crashes, etc, so pain has been a part of my life for over 2 decades. Like most people I’ve had issues with stress, depression and anxiety issues off and on over the years – I even lost my job in 2003. I had a sort of mini breakdown in the office, threw everything off my desk and ran out of the building screaming and crying.

I never went back and was “made redundant” (my manager swung it with the upper levels) in 2004. 

But the rest has sort of snuck up on me since then. I started to need help to get up stairs as my knees kept swelling up and getting in/out of chairs was murder on my back. I’ve always had pain in my foot and neck since the crashes, but it was getting worse and worse. I was in pain everywhere, suffering fibro fog and was popping pain killers like Smarties just to keep functioning!

But it wasn’t until all the muscles in my neck seized for a week that my wife forced me to go to our doctor. 

 

Samantha, when did you first notice signs of your husbands health declining?

I personally noticed subtle changes as far back as 2002, just in the way he acted, didn’t seem to enjoy his work anymore and seemed like the life had been kicked out of him. As the years have passed I’ve noticed him complaining of having a bad back all the time, his neck hurting, shoulders and his knees. 

You have to understand that I’ve been with my husband for a long time now (17 years in July!), so I did notice subtle changes in him as a person as well. I noticed him popping down painkillers like sweets, even though he thinks I didn’t know. I could see he was hurting long before he would admit it to anyone … even himself!

 

 

Raspberry, you say you have ME and FMS. Aren’t these “in your head”?

Some very ignorant and silly people believe this, yes – like that nutter who advises the government and says things like Gulf War Syndrome doesn’t exist.

But talk to any real doctor and they’ll tell you they are both very real. ME is certainly Neurological, not Psychological and both ME and FMS have very Physical effects. The government’s crazy idea that Cognitive Behavioural Therapy will make it go away just shows you how out of touch and clueless these people are. “Yes, you’re in agonising pain, but try to think more positively about it and it will go away”. WTF!? 

Yes, both ME and FMS have psychological components, like “Fibro Fog”, etc, and every chronic disorder will leave their victims with depression and anxiety; but that’s not the be all and end all of the condition, that’s just yet another symptom.

When my muscles are screaming and my joints are swollen, how can anyone say that’s in my head or that it will all go away if I think more positively about it!?

 

So, Samantha, what is your opinion on ME and FMS?

I believe they are real and not just in someone’s head. For example, as I’m doing this, my husband is in bed because his body and mind are so exhausted he simply can’t keep awake. Also the amount of pain I’ve seen him in, it’s actually emotionally painful for me to see. My husband has a very high pain threshold, so for him to be so fed up of pain and nearly in tears because the pain is that unbearable, even with painkillers, it’s got to be real.

I personally think more research needs to be done world wide into both of these conditions.

 

 

Do you feel like you have support from the medical professionals?

Well, it took my GP seven months before she said “oh, that shaking is still going on is it?”, so that should give you some idea.

The Pain Clinic I was referred to discharged me after I had a seizure during acupuncture and ended up in A&E. They said anything else they could try would probably cause me more seizures and they weren’t willing to take the risk.

My Neurologist gave up after seeing me twice (and I had to badger my GP and the Neurologist directly to get a second appointment). She referred me to the specialist ME/CFS Clinic.

After meeting me for less than 5 minutes they stated that they were not willing to help me because “we’re not trained to deal with people with your level of anxiety”. WTF!!??

I was referred to a physiotherapist and it took over a year to get an appointment. After 20 minutes of me explaining everything that has ever happened to me, the physio said there was not much she can do for me and I should just try to keep doing the little bits of exercise I manage to do now. Then she said I could go … and I promptly keeled over on my way out of the therapy unit as my legs buckled under me :-) 

Finally I’ve been sent to a psychiatrist because it’s obviously all in my head. She listened to me for nearly 2 hours. She sent an initial report to my GP and copied it to me … half the information was incorrect. 

But she did refer me to the sleep clinic and that seems to be pulling some of the threads together. So I’m hoping this will bear some fruit.

 

What about you Samantha - Do you feel like your husband has had support from the medical professionals?

I would say no. I actually think it’s disgusting how my husband has been kicked from pillar to post. I am going to contact PALS about how the so called specialists have only seen him once and decided to refer him to another one and then another.
This is basically what happened for most of last year. Even the so-called specialist ME/CFS Clinic wouldn’t help him, because of his mental health problems – caused by his ME! 

 

 

How supportive have your family been?

They’re really great. My parents live at far ends of the country, but we talk on the phone and via Skype and emails. It’s not all about physically being there to help.

People under estimate how important emotional support is. My parents and their partners are always there for both of us whenever we need to talk. I get depressed and have suicidal thoughts; I struggle most days to see any kind of light at the end of a never ending tunnel of pain. And then there’s the stress and anxiety caused by the DWP about my ESA, DLA, Sam’s Carer’s Allowance. It’s never ending and I really just feel that it would be better for everyone if I just disappeared.

But Mum and Dad pull me out of it time and again. We don’t always talk about anything specific - just talking to them about what’s going on today, or how bad my Dad’s internet connection is, makes me keep pushing onwards. 

But they’ve also both helped us out when we’ve been struggling with money for food and other things too. 

I can honestly tell you here and now that if I didn’t have my wife, I’d be dead. If I didn’t have my Mum and Dad, I’d be dead. If I didn’t have my brothers – even though one of them is in Canada – I’d be dead.

I’m really lucky to have them all and I know so many people online that either have nobody or their families simply don’t understand or even believe they’re ill. My heart goes out to all of those people, because I know I couldn’t cope without my family.

 

What about you, Samantha?

My family are not around and haven’t been in contact with me for a few years now, so I have no support from them at all. I’ve tried writing and ringing the numbers I have for them, but never with any answer. 

However, I have an amazing mother-in-law who has been very supportive. We have a really good relationship, so I find it easy to talk to her if I need to. The trouble with me though is I will listen to everybody else’s problems, but don’t like to talk about my problems if I need to.

My father-in-law is the same really; very easy to talk to and both his partner and my mother in-law’s partner are also there for us.

I worry that they all think they are not helping, but just knowing they are there if we need them, even just to talk, makes such a difference.  

When my husband had his lumbar puncture appointment his mother and partner came down and drove us to the appointment. And when that appointment was re-scheduled after we waited for 3 hours (!), they stayed with us for an extra week. They also helped us buy a replacement car (!), one that’s better for hubby and small enough for me to learn to drive in.

My father in-law has bailed us out at the bank when our benefits have been late and we need to pay gas/electric bills, he replaced our laptop so we can stay in touch with people online and he has also offered to pay for my driving lessons when I start them.

Our friend T as also helped with driving us to appointments and just coming over to see us, which is a great help to us both. He’s been a really good friend and also given me some good advice. 

I also can’t forget my husband. Even though he’s the one who’s ill, he’s always been there for me. He will hate me saying it, but he really is a special person. 

To my husband’s family, our friend T and my husband, I would like to let you all know I love you all and am thankful to know you all. To anyone I’ve forgotten - sorry! :-)

 

How has your declining health affected your life? How different is your life from say, 5 years ago?

I know it sounds like a cliché, but it’s turned our lives upside down.  

It’s not the days when I’m in such extreme pain I can’t get out of bed, or my body is so exhausted and my mind I so tired I can barely move. It’s the days when I feel not too bad that are worse.

On those days I can almost convince myself that my life will suddenly go back to normal … then I’ll probably fall over for one of the million reasons I go down; a dizzy spell, that weird neurological thing I have, my back giving out, my knees giving out, my ME causing my muscles to just stop working or something just really boring like the side effects of my pills (all of which cause “dizziness”).

These are the only days I get the chance to go out of the house … and of course that’s when we get the funny looks from everyone. “A 40 year old, with a stick? A disabled Blue Badge for one stick? You don’t look disabled, you are obviously one of those shirkers and scroungers that the system is “rife” with!”, (ah yes, the MASSIVE 0.8% of the entire benefit system!). 

5 years ago I was a successful wedding, fashion and lifestyle photographer. I’d do shoots in all sorts of locations, organise and sometimes entertain hundreds of people, shoot models in the street – and I mean busy places like London – or on busy beaches like in Egypt!

 

 

 

    

 

I’d run studio photoshoots with loads of people; models, artistic directors, makeup artists. I’d be running around all day long lugging gear, setting up lights, climbing ladders or crawling around on floors – whatever it took to get the shot. 

Now the thought of going outside gives me panic attacks. If there are more than 5 people in a room I’ll start to freak, hyperventilating and panicking. I jump when there’s a knock on the door and I’m terrified of the phone. My wife takes 20 minutes to calm me down just so we can go to the doctor’s office!

And when we do go out I can barely make it from the car to whatever shop we’re going to and then I have to get in the dreaded wheelchair and be pushed around like an invalid … you may have noticed I hate my wheelchair :-)

If I exert myself too much one day, I’ll be paying for it not just the next day, but also the two day after that as well. I’ll go from getting 3hrs sleep one night to sleeping 14hrs straight a few days later. 

I do often wonder why I even bother; it’s not really the kind of life I would wish on my worst enemy.

It’s really soul destroying when I’m feeling great and say “I’m just popping upstairs” and only make it half way before collapsing and having a seizure while I slowly slide back down the steps and my wife desperately tries to stop me smacking my head and get me up the stairs to the bed (she’s a slim 5’3”. I’m 5’8” and weight over 16st!!). 

And the most depressing thing? This is the good stuff! I’m 41 this year and I’m just at the beginning of all this. The problems are just going to get worse and worse from here. I honestly don’t think I could live with another 30 years of this.

 

 

How do you feel about someone else having to take care of you?

Look at my last answer. How would you feel about it? How can I expect my wife to deal with all of this when I can barely deal with it myself? Why should she have to give up her life? She’s not a trained carer or healthcare professional. 

And for myself, I hate having to be reliant on someone else. I used to ride motorbikes and jump out of aeroplanes. As a teen I played rugby, weight trained and did martial arts and as a designer I used to control construction teams and be responsible for multi-million pound contracts. I’ve always thought of myself as mentally strong … even though the exercise slipped and the love of great food took hold, hence the 16st :-) … so having to ask for help for anything is really difficult. I feel like it makes me something less in the eyes of those I love.

My Dad is 70 this year. He’s got his health problems, but even though he’s 30 years older than me, he’d run rings around me.

His Mum, my Grandma Jeanie, is 92 this year! She still looks after kids after school, runs around all over the place and on the rare occasions we get to see her, she’s the one that runs about making us tea, coffee, food, etc. 

Having to be looked after by other people, especially at my age and with my background, is depressing and totally demoralising.

 

 

Samantha how is being a carer affecting you and your relationship with your husband?

Good question and it’s a hard one to answer … but I will try my best, so here goes.  

My husband and I have always had a very close relationship and are very much in love … soppy I know, but it’s true. 

But even with our relationship being so strong, caring for him can have a strain on it. I know he resents the fact that he needs help and I sometimes wish he were back to his normal self before he got ill. Since my husband has become ill he has changed as a person and this is the thing I find most difficult to deal with.  I do get glimpses of the man I fell in love with and that is one of the main reasons I stay.  

We still have a romantic relationship, but it is different. I can’t explain it, but it’s just different. I don’t know if that’s how it is for my husband, but that’s how it is for me. 

Some days it’s like living with a friend rather than a husband, especially when he is having an extremely bad day. Sometimes I think maybe I should not be his carer because I am so protective of him and so close to him. But on the other hand, maybe I am the best person to take care of him because I know him so well and I do and will notice changes in him. This is not to say that some days I don’t just want to walk away and not come back. I think it’s quite natural for anyone forced into this sort of situation to feel like that. 

But it also felt almost natural for me to become my husband’s carer. I’m told I have a caring nature to me anyway, but I never thought I would end up being an actual carer. Being a carer has affected me in so many ways; some good and some are bad.

It has shown me that I am a strong person and I am capable of dealing with certain situations, like when my husband is having a seizure. Sometimes when I read through my blog, I almost forget it’s me and think “how does that poor woman cope with all that going on?” and then realize it’s me!

But on a more negative note, my husband’s health and the fact that I’m his carer has taken its emotional toll on me. I have always suffered with depression and seeing my husband’s health get worse and just having to process everything has done my head in a bit. 

In June I was prescribed Sertaline for anxiety and depression after hubby had been telling me for over a year that I needed to get some sort of help. It was about time too because I got a wake up call a few weeks later when I collapsed in our bedroom. I’ve not felt 100% right since.

I have had MRI and EEG, which were both normal, and I had to wait until October to see a neurologist. He just told me it was all stress related. He also told me that my migraines were because of the extra stress I was going through. He prescribed Pregabalin for them and they have helped a bit. I’m certainly not getting my migraines as frequently! 

I don’t want any of you to read this and feel sorry for me. Yes, I had little choice at first in becoming my husband’s carer, but I have chosen to stay his carer.

 

 

What frustrates you most?

Easy – the uncertainty of it all. What will it be today? This afternoon? 10 minutes from now? We can never plan anything or live any kind of normal life anymore.

 

 

Samantha?

There are a lot of things that frustrate me about what is happening with my husband. I’m very frustrated with how he’s been treated by the medical professionals. There has been no consistency with his care and know one has given him any real answers.

 

 

Any last words for my blog followers?

Yes, if any of the answers here have offended anyone …. Tough! Lol. Seriously though, everyone has to learn to deal with things in their own way. We use honesty and humour because if we didn’t laugh, we’d cry.

 

Also, if anyone has any other questions they’d like to ask me they can just tweet me or post here on the blog. I’m more than happy to talk to anyone. This year I will hopefully finally get around to starting my YouTube page, The Ross Rants. I’ll being doing short videos of coping with all this crap and also bitching about everything from bad drivers, this murderous government and cooking, to reality TV and the weather. Basically being a grumpy old git 30 years early :-)

 

 

Samantha?

Remember to take care of each other and watch something that makes you laugh, I recommend Family Guy.