Trip to the Other side

As a carer I always worry about Raspberrytalk every day and even more so when he has to have tests or just see some specialist. I also get very frustrated for him when the medical proffessionals can’t give us answers to what is  wrong with him or even try and give him the help he needs.

Last year I got to experince his side of things, the frustration he feels and the anxiety of having tests done, waiting for results, also the feelings of not being able to trust your body that is the most terriffing feeling for me. I also feel frustrated and guilty for being ill and strugling to take care of raspberrytalk. 

Why feel guilty don’t really know but I always do when I am not well. I think it could be the fact that I know raspberrytalk blames himself for my health problems and because he’s like me he will be worried about me too and frustrated he can’t do more.

Me and raspberrytalk have a even better understanding of the feelings we both go through.
I’m not going to write full details of the tests I had but I am going to list them.

• (ENT Specialist) Hearing Test
• Endoscopic test for throat and nose
• CT Scan of face for signs of sinutitis and other issues.

These test all came back normal and I was even shown my CT Scan and the specialsts confirmed that I do not have Sinutitis or any other issues.

 psychiatric assessment (by a Psychiatric nurse)

• Full blood work up (On a regular basis)

These tests however have shown that I have a low White Blood cell count. Result from my last blood test came back borderline….

Refferal was made for me to be seen by  Immunologist (still waiting to hear from one near to where I live) Heard from one that is nearly 2 hours away I cancelled this appointment because traveling that far is not comfortable for me because of my FMS.

• Urine test
• Stool test
• Chest X-Ray 

2016 round up

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 ..

YEAR OF HOPE, 2015……….

I think it was back in late 2014 that @raspberrytalk got to see yet another psychiatrist, but this time the guy seemed not to be shocked when @raspberrytalk had an outburst (punched the wall!). He also seemed to have a very thick folder full of all the reports done on my husband by other head Drs. I think this folder also included all other medical reports done on @raspberrytalk, which me and @raspberrytalk were supprised by. After what seemed like forever of talking to this head Dr he said he could see me and @raspberrytalk needed some kind of help. He said he’d talk to some collegues of his and get one of them to meet us at a new appointment. Both myself and @raspberrytalk felt that finally he would be getting some real help with his mental health issues. He was not offered help before because of his rage control issues, but this new head Dr was prepared to see past all of that and try to find a collegue who was also willing to help.
It seemed like ages before the next appointment. I was sort of looking forward to this one because I felt like it was the start of some real help for @raspberrytalk, which would also mean less stress for me. Having to deal with @raspberrytalk outbursts is very stressful and always takes alot out of me physically and mentaly. I was also hoping he’d get help for his panic attacks and anxiety, which were both getting worse and I was struggling to cope with @raspberrytalk when he had these spells.
The second appointment seemed to go well and both head Drs seemed to want to help. The second head Dr wanted to make another appointment so me and @raspberrytalk could talk in more detail about @raspberrytalk medical history and anything else he felt would be relevent.
@raspberrytalk and I were understandedly frustrated with the fact we’d have to yet again talk about stuff we had already spoken about with other head Drs. It seemed as though that all we ever did was talk with these head Drs and then never got any further. However, this time seemed more hopeful … or so I thought.
I think it was late April 2015 before we got to see the second head Dr again. @raspberrytalk was very anxious during the whole appointment, he even started scratching his arms and making them bleed. I kept trying to stop him but, even with me doing this, he will still do it. The head Dr even spoke to me and asked some difficult questions, which I answered honestly and I even ended up crying. By the end of this appointment the head Dr said he thought we needed joint treatment because from what he’d seen and heard it was clear that what was happening to @raspberrytalk was affecting our relationship, which is true. Being a carer for my husband has changed things and having to cope with his mental health problems has put a serious strain on our relationship. The Dr said he would talk to one of his collegues - for God’s sake! How many more head Drs did we have to see before we got any help?
By now I was getting so frustrated with the fact that we had to see so many different head Drs, but I was also feeling a sense of hope and thought we were really going to get the help we so needed.
So here we go again with the telling of @raspberrytalk medical history and any other relevent information. This usually takes up most of a session. The new head Dr seemed more interested in what I saying rather than @raspberrytalk, she was basicaly a family/couples therapist. @raspberrytalk said to me “you know this is going to turn into couples therapy”. I told him maybe not.
To cut a very long story short, we must have had at least 6 sessions with this lady and everytime I mentioned getting help for @raspberrytalk Rage Control issues the subject was avoided by them and not spoken about. It was at this point I started getting a sinking feeling because I was realizing @raspberrytalk was right and all this lady was doing and offering was couples therapy.
I think it was at our 5th session that she admitted she could not help with the rage control issues and gave us a contact number for MIND. Well I contacted them and they no longer offer help for anger management either. However, they did give me a few links to some local therapists, but they all charge for their time which we can not afford on benefits.
I can’t even begin to tell you how frustrating all of this is for me and @raspberrytalk. I had really hoped 2015 was going to be the year we got some proper help for him. I feel like the whole year was wasted and I also feel like the system has failed @raspberrytalk once again. Unfortnately it’s only going to get worse with all the cuts to the NHS and benefits. I’m really at a loss as to where to turn or who to talk to next.
Well, at least we got to have a holiday last year … but even that ended up being a disappointment … just read this and you’ll know what I mean.
The couple’s therapist has now signed us off and we are still struggling with @raspberrytalk rage control issues, panic attacks, agoraphobia, PTSD and anxiety as well as all his physical problems. Just what the hell do we have to do before we get some proper help? … I am really struggling with dealing with his mental health issues. I don’t want to sound selfish but, I have my own health issues to deal with too ...
Anyway, I’ve written to our GP in desperation and hope that he will be able to help or at least be able to referer us to someone who truly can help. I only just sent this letter so it’s a case of playing the good old waiting game …… which, to be honest, just frustrates me even further.

Take care of each other
Carer’s Vent

JOB DESCRIPTION

A while ago someone suggested that all us carer’s should write down what we do. Basically a job description, which I thought was a good idea and it’s not until you write it all down that you realize how much you actually do as a carer.
A while back I had to write down and explain everything I do for @raspberrytalk for a letter I had to write in support of him to get his DLA. It surprised me how much I actually do and how many of the things I do without realizing I do them (sounds strange I know but it’s true). For example, making sure that @raspberrytalk does not drift into a road/person when walking.
Also, while writing the letter, it made me see that I do things that I never thought I'd ever be able to do. Which also made me realize how much being a carer has changed me. It’s made me stronger and more assertive when I needed to be; I’m normally not an assertive person but, when it comes to being a carer, I am. Sometimes I read my old blog entries and think I'm reading about someone else entirely. I’m sure other carers will be able to relate.

JOB TITLE:	Carer
DESCRIPTION:	Looking after the physical and mental health and well being of @raspberrytalk.
DUTIES:	Administering First Aid when required. Administering Medication Assist with getting in and out of bed Assist with dressing and undressing Assist with personal care and hygiene Offer mental stability and point of focus when required Lift off floor after a fall or seizure Assist with walking Watch for changes in behaviour and act accordingly Maintain a safe environment   Take care of nutritional needs Provide encouragement with simple tasks General house work including making beds, tidying, washing up, laundry and cooking meals.  Assist with feeding when required Take to appointments and chaperone Collect medications Help with completing forms Managing finances

I have probably forgotten loads of things, but this is all I can think of at the moment.

DARK THOUGHTS………..

So from time to time most of us will have thoughts of hurting ourselves or of ending it all ……… well if you haven't you’re lucky and may not be able to get your head around a lot of what I'm going to write in this blog.
Before you carry on reading please be aware that I am going to be talking about SUICIDE.
I saw this In the End, There Is Only Room for Love on Facebook this morning which was a letter a woman has written to her husband who committed suicide.
I almost cried reading what she had written for several reasons, the main being that @raspberrytalk has a daily battle with his dark thoughts of committing suicide. Some of you may think this makes him weak, but it’s not that black and white and until you have had these sort of thoughts you will not understand ….. it’s hard to explain and I'm not even going to try.
I’m finding this blog very hard to write (deep breath) but I feel I need to write it because there is so much stigma attached to such a subject and there needs to be more awareness of such things.
So why do people have these thoughts? Well as someone who has also had these thoughts it was all part of my depression. For @raspberrytalk I think it’s separate from his depression and it’s a monster that enters his thoughts mainly at night. He even knows how he would end his life (he has just told me he has several options!). As he was saying this to me he sounded and seemed very calm and normal. This is one thing I can’t get my head around - the fact he’s calm and talking to me as if we were talking about the weather.
Whatever the reason someone has for wanting to end their life, we have to remember our love or friendship is not thought of any less just because even though they have our love and friendship that person still has thoughts of ending their life. They’re not being selfish or trying to get attention, having Suicidal thoughts is not a choice, just like any mental illness.
So earlier I mentioned the letter a woman has written to her dead husband. I really hope I will never have to write such a letter, but I do know if I had to it would be full of mixed emotions. I would also feel that I have failed my husband somehow and would question why my love and the love of his family and friends was not enough to make him want to stay – even though I know I shouldn’t!
We need to bring more awareness of Suicide as much as we hate talk about it I think we need to.
CALM ZONE
SUICIDAL FEELINGS

RESPITE

As carers it is just as important to look after our own health. Having time for yourself is very important and while you can do this in little bits throughout the day while still looking after someone, you also need to have time away from actually being a carer or time away from the person you care for.
There are different ways this can be made possible. DAY CARE CENTRES are the most common and these are usually funded by your local council, so there usually is no need to pay a fee (or very minimal fee). Unfortunately these centres are different depending on where you live. A few years ago a very nice lady came to see me and @raspberrytalk to talk about the possibility of us using one of these centres. After discussing @raspberrytalk issues it was clear to me that the centre was neither able, nor willing, to look after someone with such complex issues. So that was that…………bugger!
Another way of getting some respite is getting home visits by a Health Care Professional. Again availability is different depending on where you live - also this is a service you have to pay for. Some carers take on part time jobs to fund this if they can, but this can effect your Carer’s Allowance depending on how many hours you work. The other way to pay for this service is to get a Grant from a charity or your local council (this is sometimes called a direct payment). I do believe these will be changing this year, a lot of areas will be losing or having services such as these cut, all thanks to the Tory government……….
I contacted these guys, Essex Respite, who offer respite for carers of someone with a mental health condition. I thought this was great, but what I didn’t know was you needed to pay for this. I was unfortunately not in a position financially to pay for such a service and I don’t think the council would have help as we had already had big grants for #raspberrytalk ramp and my driving lessons.

So no real respite for me
But, if I did get respite, I would like to spend the time with my best friend … @raspberrytalk !
A lot of people think I’m strange because I would like to spend respite time with @raspberrytalk. At the end of the day it’s not him I want a break from, it’s a break from being a carer!
Maybe this is where I’m different from other carers, I actually miss just spending time with @raspberrytalk, being his wife. I never seem to be able to switch off from being a carer. Damn it!

Take care of each other,
Carer’s Vent

@carersweek2015
I've signed up have you? Show your support for ‪#‎carers‬ by signing up only takes 5 mins http://www.carers week.org/sign-up

Technorati Tags: respite,direct payments,mental health,carers week,rethink,day care centre

More Awareness Please……….

 

I personally think there needs to be more awareness of mental health conditions.

Whenever something is in the press they usually talk about DEPRESSION, DEMENTIA, Alzheimer's, which is great because we do need to be educated about these conditions, but there are so many more Mental Health Conditions. We never hear anything about the Cluster Conditions. My husband has what they call Cluster B. Even as I'm writing this blog I'm having trouble finding links about the Cluster Conditions, so how on earth how am I to help my husband if I can’t find much info on the condition?
Also, because this condition is never mentioned in the press, people think you’re mad whenever you mention it or they want you to explain it in more detail, which in itself is a nightmare to explain.

I personally think there should be more press about all mental health conditions, because I think the more we hear about these different conditions the more we can recognise them and help people with any of them.

   

It was recently Time To Talk Day, but how many of you knew this? I only knew because I follow @timetochange on twitter. I watch the news and even sometimes watch breakfast TV and I didn’t see anything about the Time To Talk Day.

I also feel the press only talk about older carers (50+) or carers that are children. I personally think no child should ever have to be a carer and I have a lot of respect for those that are, but what about the carers that are say 40+ and are caring for someone in that age range? There never seems to be any press or awareness of these carers or the people they care for. It can be very frustrating for me being someone in this age range and caring for someone in this age range. Also I noticed that a lot of the charities will only help either the really young carers or older carers (50+). What about the middle aged carers? We need help too!

I’m just glad that there are so many carer groups on Facebook that understand that carers come in all shapes and sizes.

 

Anyway …. Here’s a couple of mental health groups on Facebook:-

Carers Connected

Making Mental Health Positive

 

Remember Take Care Of Each Other,
Carer’s Vent

 

Technorati Tags: carers,carers connected,mental health,cluster b,mind,awareness,time to change,time to talk,carers vent,raspberrytalk,depression,dementia,alzheimer's

The Unwanted Guest … (ROB)

I’m sure many of you had unwanted guests at Christmas, some of which you are able to turn away, some that you can’t and you just wish they would go away.
Any of you that read my blog on a regular basis will know who ROB is. For those of you that are new to my blog, may I suggest that you read the 3 people I live with before reading any more of this blog entry.
My unwanted guest decided to come Christmas day, just before serving up Christmas dinner, which was just perfect timing don’t you think? ……
I was not expecting to see Rob at all and I was certainly not prepared to speak to him. Unfortunately Rob comes out to play when he feels like it and he doesn't care what else may be going on. I was not in the mood for Rob, so when he started verbally attacking me, I broke down in tears. And, as usual, even though I broke down like this I still tried to calm my husband (Rob) down. But the more I tried the more angry he got and more of Rob came out. I even lost my temper a bit at one point and shouted at my husband and I even threw a glass bottle outside (fortunately it didn’t break!). I know I shouldn’t have done this, but I was so frustrated that Rob decided to come round for a Christmas fight.
Like I have already said the more I tried to calm my husband down the more he got into a rage and used me as a verbal punch bag. That is certainly how I feel when he goes into Rob mode. Also, even though his mother and step father were here, it was still me who got the full brunt of Rob’s verbal abuse. L
I felt so frustrated afterwards for several reasons. Not being able to hold it together was the main thing, but also that I didn’t even notice he was coming out to play. I was also frustrated that there is nothing I can do for my husband when he gets like this. I’m sure other carers out there that care for someone with mental health issues feel this way too.
Don’t know what the answer is, but I do know both me and my husband need some help with managing this side of him. Will we get the help we need this year?

Technorati Tags: Mental Health,mind,carers,christmas,personality disorder,rage control,carers connected,mental health video,cluster B

Making of a Mental Health Video

For a long time I have been wanting to do more for spreading awareness of mental health.

I have been retweeting stuff on twitter, but I felt this was not enough. So my idea to do a video came to me one night while wide awake in bed. The original idea was just to have captions to music, but after discussing it with @raspberrytalk we both agreed that actually talking about mental health would be better.

I was going to do the talking on the video, but I then thought it would be more impactful if we had both sides - mine as the carer and @raspberrytalk as the caree.

We neither of us dreamed this would take us on such an emotional journey - some feelings that had been buried come up to the surface while doing the video. But most of all, doing this video reminded us of what a good team we really are.
During the editing process it almost felt like old times when we used edit wedding videos together. Just a pity we don't have a decent camera any more :(

 

WE NEED TO TALK MORE ABOUT MENTAL HEALTH AND STOP THE STIGMA
 

@mindchairty
@stampstigma
@timetochange
@recoverycastle
@carersuk

Special thanks to
 our Family
Carers Connected
@raspberrytalk 

Answers

Next week should hopefully be not so busy, at the moment only a doctors appointment for me next week. @raspberrytalk is seeing neuro-psychiatrist tomorrow lets hope he helps, 2-3 years on and we still have no proper answers except that my husband has:

Cluster B PERSONALITY DISORDER .

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.

knowing my husband has cluster B explains his mental health but what about his physical health which has declined more and more over the last few years. it is so frustrating for both myself and @raspberrytalk also the so called medical professional's seem to look over his physical health and put it all down to his mental health or they just say its in your head. They are missing the fact that my husband is in pain everyday, can't walk most days and also some days he can't get out of bed because he's so fatigued. I could go on but I won't because I would be here all day. we just want answers. is it so hard for these so called medical professionals to help or even do test that have not been done.........

21st October 2014

so my husband saw a neuro-psychiatrist on 19th September 2014, who only focused his attention on my husbands seizures and kept saying you need to keep a diary of them and write how you felt and how you thought other people around you felt...................I tried telling the so-called specialist that there is no pattern to my husbands seizures. He totally ignored anything I was saying, anything @raspberrytalk said as well. I feel so frustrated for myself and @raspberrytalk............still no real help or answers.

next week @raspberrytalk has yet another appointment to see a  psychiatrist, we chased this up with the doctors to find out why and apparently the neurologist we saw a while back said my husband is very depressed really I wonder why..............

Importance of Supportive people

 

Those of you that are regular readers of my blog know that a that i wrote about the importance of support http://carersvent.blogspot.co.uk/2012/12/the-importance-of-support.html

In this blog entry I am going to be talking about the need to have only supportive people  in your life when you are a carer. My husbands family have been so supportive and i know if i need to talk I can go to them. there are also a lot of carers groups on Facebook, the people on these groups are so supportive and they never judge me either. I am thankful that these groups are out there and i am thankful to my husbands family, don’t know where I would be without all of you.

  

I recently spoke to a member of my family and they said i make everything about me. to cut a very long story short this person has not actively kept in touch with me over the years. Also when i have told them about what i am going through they have replied with sorry to hear that but we all have our problems………..you would think they would ask if there is anything they can help me with or just let me know i have their support. this has not been the case and when i spoke to them earlier this week i ended up telling them to F off out of my life if they think i am selfish.

I know some of you will say “but they’re family”, but as someone who is a carer I need to surround myself with supportive people and not negative people. I don’t have the energy to deal with negative people or people that are just not supportive.

 

Special Thanks to

@raspberrytalk

@recoverycastle

@carersconnected

@carersuk

All my husbands family

BATTLE Caree VS Carer

I was in two minds to write this blog entry and that is probably why i have waited so long to write it………..anyway here goes………….
I am sure a lot of other carers will be able to relate to what I am going to write about. I love my husband very much and he loves me very much, but since I have become his carer there has been a battle going on between us.
My husband can be very stubborn and so can I. Also my husband is still coming to terms with the fact that he is ill/disabled and needs a carer. So because of this most days he will not listen to me. I seem to know his limits more than him and i seem to know when he’s doing to much. It doesn't take much for my husbands body to get worn out, he will do something as simple as to try and make a cup of coffee and he will be tired. But despite the fact he knows all this and I'm always telling him, he will still try and do things he just can no longer do. It’s even worse when we go out anywhere. He will refuse to use his wheelchair and he will also sometimes get frustrated when i tell him not to do something because I know the affect it will have on him…
Some days I do feel like I'm constantly telling my husband no. I almost feel like a mother telling her child to stop being naughty! This is not how i want mine and my husbands relationship to be like, I want to care for him but i hate what sometimes seems like a constant battle between Carer vs Caree.
A few weeks ago i was really struggling with my caring role because i felt like i was forever having a battle with the person i love so much. I even thought about not being my husbands carer any more because of the battling, I felt it was affecting our personal relationship which being a carer for a loved one can do.
So what stopped me? I think it was mainly the support of other carers on Carers Connected. Just letting how I felt out and then being told it was normal and just knowing the support is there for me (even if only emotional support) from people that understand how I feel.
I did eventually speak to my husband about how i was feeling and he admitted he is a handful…the battle is still going on, some days worse than others and I think there is no real solution to this, but we’re both aware of it and trying …..

One of the lovely ladies who runs the page Carers Connected also runs Recovery Castle  was founded in 2012 by individuals affected from a range of mental health difficulties. It aims to encourage and empower those affected by mental health difficulties through peer support, both online and through local community workshops.
Carers Vent Twitter
Raspberrytalk Twitter
Carers Vent Facebook

Brave Raspberrytalk

Good morning all @raspberrytalk wrote the following message on @facebook last night. I wanted to share it with you all because I am so proud of @raspberrytalk for writing this, it must of taken all the courage he can gather to write it. Oh and before you all ask he has given me his permission to share this. Lets all be more open about our mental health.

To my friends and family, just so you all know and I can stand up and say it ... deep breath ....

I have mental health problems!

As well as my physical and neurological health issues, I have Cluster B Personality Disorder (look it up!) with rage control issues, Panic Disorder, Social Anxiety Disorder, Agoraphobia and good old fashioned Depression (no, that doesn't mean "being a bit sad or down" and yes, I do consider killing myself on a fairly regular basis). ...
My seizures are apparently Conversion Disorder (which is part of Functional Neurological Disorder), which according to my psychiatrist means they're all in my head, but according to my psychologist they're physical/neurological! Those of you that have had the pleasure of witnessing them can make your own minds up about that bit

Am I ashamed? Yeah, a bit. Actually quite a lot!
Do I think people, including friends and family, look at me differently? Yeah, a bit. Or I could just be paranoid .... yeah, add that to the list! lol

But more than anything else? ..... I am just so totally and utterly fucking terrified all the time about what the hell is happening to me and what is going to happen next, what am I going to do to my friends and family and how the hell is my beautiful wife supposed to deal with it all

Am I upset, shaking and almost in tears while I write this...? What do you think?
(well, the shaking bit is a given since I generally do this most of the time anyway! )


I've actually just spent the last 10 minutes staring at the screen trying to decide whether or not to press "Share"

huffingtonpost.ca mental-illness

#TimetoTalk.

MENTAL?

Mental Health is something most of us avoid talking about, especially when it’s the mental health of someone dear to us. In my case it is my husband (@raspberrytalk).
I love my husband very much and he loves me very much as well. But with that said neither of us can control his mental health and sometimes I want to just pack my bags and go. Out of all the problems my husband has, I find the mental health side of things the most difficult to deal with.
Ever since I have known my husband he has always had a aggressive side to him, which over the years I have tried to deal with and I always thought it was my fault. But I found out from talking to my husband that he has always had this side to him. He has even admitted that whenever he and his first wife argued this more aggressive side of him would come out. He even believes that this may be the main reason his first wife left.
The following are extracts of a psychological assessment conducted by Dr Pamela McGeoch, clinical psychologist, 3rd march 2013

“…he continues to exhibit a rage problem with cluster b personality disturbances and exhibited intimidation towards his wife and the interviewer...”

“…the patient was found to be too emotionally unstable, physically unwell due to chronic pain, and too aggressive to conduct a thorough in depth psychological assessment …”

“…a report also states that the patient stated that his first wife left because she was afraid of what he may do to her when in a rage…”

“…he showed some concern for the effects of his physical condition and his aggression on his wife and some awareness of his inability to contain this. He reported that ‘when ROB comes out, my wife ends up lying screaming on the floor. I have no control over it, I can’t stop it from happening, I can’t even apologize.’…”
“…The patient and his wife together reported that he has not physically assaulted her at any time. However the interviewer was concerned for her physical safety, particularly if she tried to leave the patient and for the current emotional intimidation and likely verbal abuse she is experiencing…”
“…The patient was found not to be suitable for psychotherapy due to the level of his instability and violence. Identifying appropriate treatment resources including anger management in a suitable facility for the level of expressed violence is recommended as there is significant current risk of violence…”
“…anything further that can be done to relieve the patients physical condition such as referrals to spin or nerve damage specialist is recommended…” 

As you can see they talk more about aggression and they even give it a name. In some respects it was somewhat a relief that how he was getting was a mental health problem and something he has no control over. It also confirmed to me that it was not anything I was doing or making him do. Also because he had been diagnosed with a mental health condition, we both thought this would mean that he would get some real help and also that I would be given some help and assistance in knowing how to handle his mental health. Strangely enough this assessment was carried out a year ago yesterday and nothing has happened! No help for me or my husband with managing his mental health.
The doctors at our new GP’s are aware of my husband’s mental health problems, yet they have not offered any help or even made any referrals for us to get the help we both need. My husband recently asked our GP if there was any news about the referral to the specialist neuro-psychiatrist that Dr Broeker, Consultant Psychiatrist, had recommended back in May last year. Our GP told him that he knew nothing about it (not true, we’d seen the letter at a previous appointment) and that it was my husband’s responsibility to chase up the psychiatrist. We had to write to the psychiatrist to ask him to write to our GP to request a referral again. Surely not something patients with mental health problems should be being made to do!?
As you will see from his care plan/report, the psychiatrist was also concerned about my health and how I was managing with being the prime carer for my husband.

“The patients wife has increasing difficulty to cope with the demands on her and the patient feels that he is a burden to his wife.”

“his wife is very supportive and his wife will be offered a carers assessment as she appears to struggle increasingly with looking after the patient.”

Well I have had 2 carers assessments since last May and nothing has changed. At my first assessment I was given out of date leaflets and at the second one I was told to try and have some time to myself ….. REALLY!? They have not got a clue …….
With that said, I did get the details of Action For Family Carers who have helped me and my husband as much as they can. They even got me referred to CBT which has surprisingly helped me.
But we still have not be offered any real help with my husband’s mental health, or for me with help dealing with his out bursts, etc. At both carers assessments I was asked if I felt I was in immediate danger. I always say no to this question because, yes my husband can have outbursts of violence but, he has never physically tried to harm me. But his mental health problems are effecting my own mental health wellbeing, which is something that needs to be changed because I have got to a point where I have given up!
I really don’t have the strength any more to deal with his outbursts, which I know sounds harsh but, I am mentally exhausted and really don’t know what I should do ….

So Why Stay?
Whenever I ask myself this question the answer is simple; my husband is one of the most caring people I know. I fell in love with this guy who was and still is the most sweet natured person you could meet. I love him warts and all as they say.
Also the way I look at mental health problems is that they are just like any other health issue - it is just something which has happened to that person.
Like I have already said my husband is a caring, loving person and is amazing because, despite what he’s going through, he is always only worried about how all this is effecting me and what he can do to make things easier for me. I think this is one of the reasons he wants me to publish this blog entry; after all he always encouraged me to start this blog as a place for me to “vent out”.

Benefit scrounger…………….Yeah Right

As promised, I am going to have a big rant about the Media and MP's calling anyone who does not work a scrounger. Me and #raspberrytalk used to run a photography business called Campbell Photographic

Running your own business is a lot of work because you have to do a lot of admin as well as the actual job. Also there’s meetings with potential clients, marketing, etc … the list goes on. So me and #raspberrytalk are not what some people call “work shy”, we are both far from it. Before we ran our own business I worked as a sales assistant and #raspberrytalk was a Senior Store Designer for Sainsbury's. Both my job and #raspberrytalk’s could mean long hours and sometimes for #raspberrytalk it meant days, even weeks, away from home.
My husband was someone who could run a business meeting of contractors, architects, etc, or someone who could organise and keep happy 300+ people at a wedding for group photos, etc. When we ran our photography business we would both have to interact with people we only met once or would not meet until the day of a photoshoot. My husband was a very confident, strong willed man. These days #raspberrytalk suffers massive panic attacks at the thought of going out to the supermarket to do food shopping, or hides trembling in the kitchen if someone comes to the front door. Sometimes he has really bad aggressive outbursts when he will scream and shout at people or himself, but then he’ll try to stop and control himself by self harming. He will scratching himself until he bleeds or hit himself in the face/on the head and punch or head butt walls in a panic.
Physically, a good day for him is a day where he can have a shower and wash his hair (with my help of course) without collapsing from exhaustion. A bad day will mean staying in bed crying because of the constant pain, unable to think clearly or speak properly and drifting in and out of sleep because of the fatigue (but never feeling rested or refreshed). He has not got the physical energy needed to do a job and because of his mental health problems there is no way he would be able to interact with people safely. For those of you that don’t know what problems my husband has, go to the WELCOME PAGE. Now ask yourself, could you work if you had just one of those problems let alone all of them? Choosing to be my husband’s CARER was a natural but by no means a easy one. It meant I could no longer work because my husband needs continual care and supervision. This meant money would be tight assuming the DWP recognised the fact that my husband is ill and needs a carer. Those of you that regularly read my blog will know that we have had to battle to get the benefits we are on currently. We had to fight to get his DLA. It took over a year for the decision to be overturned at tribunal, which meant during that time I was not allowed to apply for CARERS ALLOWANCE.
During that time #raspberrytalks conditions had also gotten at lot worse, which meant by the time he was awarded middle rate care he could barely walk! So we then had to reapply to get his mobility award … which is another story!  My husband is also receiving ESA which, after 6 months on assessment rate, he was sent for a Work Capability Assessment with ATOS. You can read about his horrific ordeal here – #raspberrytalks WCA horror story.
I'm sure a lot of you have heard a lot about ATOS and their assessments and trust me, the bad stuff you’ve heard is true. Me and #raspberytalk know first hand what these guys are really like. After going through what could only be called torture, mentally and physically, for both myself and #raspberrytalk he got granted his ESA under regulation 35.2. Certain claimants to be treated as having limited capability for work-related activity.
35.—(1) A claimant is to be treated as having limited capability for work-related activity if—
(a)the claimant is terminally ill;
(b)the claimant is—
(i)receiving treatment by way of intravenous, intraperitoneal or intrathecal chemotherapy; or
(ii)recovering from that treatment and the Secretary of State is satisfied that the claimant should be treated as having limited capability for work-related activity; or
(c)in the case of a woman, she is pregnant and there is a serious risk of damage to her health or to the health of her unborn child if she does not refrain from work-related activity.
(2) A claimant who does not have limited capability for work-related activity as determined in accordance with regulation 34(1) is to be treated as having limited capability for work-related activity if—
(a)the claimant suffers from some specific disease or bodily or mental disablement; and
(b)by reasons of such disease or disablement, there would be a substantial risk to the mental or physical health of any person if the claimant were found not to have limited capability for work-related activity.
For now both me and #raspberrytalk are getting benefits. I’m currently getting Carer’s Allowance, but this is only because he won his appeal for DLA (which is going to have to renewed later this year). We get joint ESA, which we had to renew before Christmas and we are still waiting to hear back ………….
Sounds like a lot but it’s not. I get Carer’s Allowance, £59.75, but as this is classed as income (35hrs+ per week for £59?? Well below minimum wage Mr Cameron!) our ESA is reduced by the same amount, which does make me wonder why I even claim carer’s allowance. But any money is better than none, especially with all the changes to other benefits such as housing benefit, etc. We do get an extra Carers Premium of £30 because of #raspberrytalk’s level of disability, but it’s still not a lot.
Even being on these benefits we struggle to pay bills. When we go food shopping we always look in the reduced section, we look for the best deals and when we do eat we always reuse any leftovers for another meal. Nearly all of our clothes are bought from charity shops. We don’t go out every other week for a meal or buy ourselves nice things. We did go out for my 40th birthday, but that was a treat and we saved for the whole year for it. Despite what the media would have you believe we don’t go away on loads of expensive holidays - we haven’t had a proper holiday since 2005, except for a reduced, last minute weekend at Warner because the car service cost less than we had allowed for and a couple of visits to #raspberrytalks dad in Scotland.
So anyway, I am now having to be a full time carer, which is a lot harder to do than a normal 9-5 job or run a business. As a carer you get paid less than minimum wage and in some cases you never get time off. We live in constant anxiety and stress because we never know what each day, hour or even minute is going to be like because of my husband conditions. We live in constant fear of the dreaded “brown envelopes” arriving or debt collectors banging on our door because of the money we owe. Also when you do eventually get offered some help, it is usually very little, not really suitable and usually too late.

So what’s the real point of this rant? I just wish the media would stop focusing on the people that are clearly not in the same situation as me and raspberrytalk or the majority of real people out there that are in need. I really wish that certain MPs and TV shows would stop calling anyone on benefits scroungers, work shy, malingerers, etc.
I don’t want to get political but the MPs are really making things worse by shouting their mouths off about something they really know nothing about.
I hate the fact that we have to live on benefits and will probably be on them for the rest of my life. #raspberrytalk hates the fact that he can no longer provide for me and himself. He is also frustrated that he can’t do any of things he did before he became ill or that he has to rely on someone else to look after him.
I really wish just one of those MP’s could step into my shoes for even just one week or month.
Special thanks go to:
Raspberrytalk’s family for their continued love and support.
@action4carers
@carersuk

@carewelluk
@carersweek

@helensbeadbox
@robinwickens 
@pritipatel (yes she’s an MP, but she has helped me and @raspberrytalk with the DWP).   







 

FLU JAB

I will be writing a blog about this and the attitude of health professionals when it comes to ME and Fibro.

Long weekend away

Me enjoying a well deserved break
 

Warner UK

Ludkriss Salon

Massage

@raspberrytalk

@carersvent

compromised immune system

 







Bathroom in our chalet at warner

 

 

 

Mr Damp... This was what we woke up to

 

Damp door handle

carersvent take care of each other

 

 

 

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