2016 round up

The C Word……

So, as a carer you can sometimes have some very scary moments. For example seeing your loved one having a seizure, or hearing a doctor say that your husband needs to go on the suspected CANCER list!
As I heard those words my heart started pounding and I turned to the doctor and said Shit!
He said “Yes, shit indeed”.
I suddenly had this horrible feeling that I may lose @raspberrytalk. I know Cancer can be managed/treated these days and it’s not always a death sentence, but my mind just rushed to worst thought ever - especially as @raspberrytalk had been hiding his symptoms from me for at least 2 years and as you all know with CANCER time plays a big part … so you can see why I thought the worst.
Even though @raspberrytalk was sent for testing to make certain very quickly, for both of us it has seemed like a very, very long time. It has been a very stressful couple of months and I really don’t want to have to go through that kind of scare or stress again. I also don’t want @raspberrytalk to have to go through any of those tests or stress again – any of you that have ever had a colonoscopy will know what I’m talking about.
So, near the end of February We heard the C word and we finally received the test results letter in mid April saying that @raspberrytalk had been taken of the suspected CANCER list.
Yeay! You can’t even imagine the relief I felt. Of course @raspberrytalk just looked at me and said “I told you it wasn’t CANCER”. Seems like I had more of a scare than he did.
However the letter did confirm that @raspberrytalk has Inflammatory Bowel Disease and if you read any info about this you will see that symptoms can include :-

• painful and swollen joints (arthritis)
• mouth ulcers
• areas of painful, red and swollen skin
• irritated and red eyes
• shortness of breath
• a fast or irregular heartbeat
• a high temperature (fever)

all of which @raspberrytalk experiences, amongst other things.
As horrible as it is for @raspberrytalk having this disease, it could explain some of what he’s been going through and most likely has been contributing to all the other problems he has in relation to his ME/CFS and Fibromyalgia.
Both Ulcerative Colitis and Crohn’s Disease are long-term (chronic) conditions that involve inflammation of the gut (gastrointestinal tract). Thankfully @raspberrytalk does not have Crohn’s which can eventually KILL YOU(!) because of the complations it causes. He has Ulcerative Colitis, which is not nice and does cause complications of its own, but appears to be the lesser of two evils.
I’m thankful every day that @raspberrytalk does not have CANCER and think we should be counting our blessings.

Take care of each other
Carer’s Vent

Just as a side note, one of the tests @raspberrytalk had was an ultrasound on his Gallbladder, as they wanted to check that wasn’t the cause of the bleeding and stuff. All clear, but the lady doing the test did notice something on his Liver, but the ultrasound proved “inconclusive”.
So they sent him for a complete CT scan with contrast injection (that left a lovely bruise!).
We’re still waiting for the results, so the stress and worry begins again … or maybe never stops!? …...

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 ..

Non Epileptic Seizures…..

 

What the experts say they are…… The following information was taken from www.epilepsy.com Psychogenic Non-Epileptic Seizures – PNES - are attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking. Less frequently, PNES may mimic absence seizures or complex partial seizures with temporary loss of attention or staring. A physician may suspect PNES when the seizures have unusual features such as type of movements, duration, triggers and frequency.

 

I think it was in 2012 when @raspberrytalk had his first seizure. To cut a long story short we went to see our GP who made a referral for @raspberrytalk  to be tested for epilepsy. So he had a very basic EEG test which came back clear for epilepsy … which both myself and @raspberrytalk were relieved about.  But it meant we didn’t have answers and meanwhile these seizures were becoming more frequent and violent. Some of the medications @raspberrytalk is on are sometimes used to help people with seizures mainly epileptic, but they don’t seem to work for him.

Because the doctors and specialists can’t find anything biological causing these seizures they put it down to stress, “unresolved psychological/emotional issues” and so on and there is supposed to be triggers.
I’ve been watching my husband have these for a long time now and I have even tried to see a pattern - and I’ve yet to see one. So how on earth can someone who doesn’t really know my husband or even seen his seizures say they’re all in his head? Surely if this was the case I would have seen these triggers and could help my husband avoid them when possible? I’m constantly telling the specialists that I can’t see a pattern and that there appear to be no specific triggers … but they just ignore me and still ask us to keep a record of the seizures and what he is doing/thinking/feeling when they start … very frustrating for both myself and @raspberrytalk.

@raspberrytalk even has these in his sleep! I have to sleep in a separate bed away from him because I have been injured before by him having a seizure while in bed … not a lot of fun getting smacked in the face, elbowed, kicked……. 

I believe that if more in-depth tests were done that they may reveal something. But where to start? @raspberrytalk has already had a spinal tap done, MRI’s done, blood tests, EGG but all these have been basic tests … what other tests could be done if we had money to pay for them? Maybe a Functional magnetic resonance imaging with contrast, a more in depth EGG or further/different blood tests? What is the answer? Unfortunately, without money to pay for more tests privately, there not much more the doctors and specialists can or will do. So for now all the medical professionals are treating these seizures as a mental health condition …!

 

So, how do other people react to seeing or hearing about these seizures?

Tell most people its not epilepsy and they seem to think they’re not as serious or as harmful to the people having them. I assume its lack of knowledge making them think this, but these types of seizures are just as bad and, unlike epilepsy, a lot of the time the person having one of these seizures is aware of what's happening to them and they can feel it too!

When @raspberrytalk has these while out in public most people just stare, but there has been some people who have asked if I/ we need some help. If we’re in a shop I usually ask them to get a First Aider who can then assist me with keeping @raspberrtalk safe. Going food shopping has become a real challenge because of these seizures (just read the following link seizures in supermarkets).

I was recently asked to describe these seizures and I found it very difficult to put them into words, mainly because when remembering seeing my husband have these it makes me very emotional and usually end up crying.  One way I do end describing them is by referring to the film The Exorcist because a lot of the movements he makes remind of some of the scenes in the film for example this! Also, a lot of the movements look like muscles tightening, he sometimes arches his back and twists his neck in such a way I think his head is going to turn round like in the film! 

 

So what do they feel like? Let’s ask @raspberrytalk

Non Epileptic Seizures, PNES, Non Epileptic Attack Disorder, Pseudo Seizures, Conversion Disorder Seizures. They have loads of different names for the same thing – but I’ll start by saying that everybody’s NE seizures are different. What I go through can be wildly different from what others experience, so I can’t presume that this is what everyone else experiences. I also get absence seizures (or possibly Atypical absence seizures).

Regardless of what they call them, for me the NE seizures are excruciatingly painful and terrifying.

 

I assume everyone understands the basics of how we move, that muscles only pull not push? An example – at a basic level, if you want to lift your forearm your bicep contracts. To lower it again your triceps contracts. Obviously there’s a lot more to it than that involving tendons, bones, etc, but you get the point.
If you’ve ever lifted heavy weights, or had an arm wrestle you’ll understand what it’s like straining your muscles against something. Well now imagine what it would feel like when ALL your muscles and tendons decide to pull or contract at once! What would happen to our basic arm example above if the bicep and triceps decided to BOTH contract at the same time!?
Well that is what happens to me. Arms, legs, shoulders, neck … all trying to pull against one another in all directions at the same time. We have the fun of abs spasming while my back muscles join in, so I start knifing backwards and forwards at the waist. Apparently sometimes the back muscles win and I’ll arch my back so high that only the back of my head and the backs of my heels are touching the floor!

My jaw locks tight. I have stress fractures in all of my teeth now. My chest and diaphragm go mental, so my breathing is buggered and I start juddering like I’m attached to a jackhammer. And lets not forget the clenching and unclenching of fingers and toes, wrists and ankles and everything in between.

So while my arms and legs are flailing about, bashing objects, the floor … sometime people … I can feel all of this. The agony in my muscles, tendons and bones, my arms and legs bashing things. Even my head smacking repeatedly into the floor because of the shaking and my neck muscles going “exorcist”!

At the same time that I’m going full on possession, I can barely breath because of hyperventilating or holding my breath while my muscles strain, my heart (a muscle remember) is pounding a drum solo and trying for the world record of “most beats per second”, my blood pressure is up, blood sugar is down, I’m barely aware of what and who is around me or where I am, I can’t see properly, I’m screaming in my head because I can’t scream out load (no air, jaw locked, etc) and all I’m fully aware of is that my entire existence, at this moment, is pure, agonising, burning pain. Just pain. When I do try and scream out loud it usually just gets cut off while my throat closes and stops me breathing.

And lets not forget the terror. What is happening to me? I can’t control my body – what if it never stops? Is this it? Am I going to die this time - have a heart attack or burst a blood vessel in my brain? Stop breathing? Are my muscles going to tear or a tendon snap (it bloody feels like it!)? What if I survive, but get brain damage? Snap my spine and end up in my wheelchair permanently? Burst blood vessels in my eyes and go blind …. and on and on and on … all running through my head, while at the same time still worrying that I might hurt my wife or someone.

Afterwards I feel like I’ve run a marathon and then gone 5 rounds with a seriously pissed off tiger. All I can do is lie there, completely unable to move, everything hurting and aching and just concentrate on breathing … IF I’m lucky … because sometimes what follows my seizures is the fun of a panic attack!

 

And what have I been offered at every turn, by every doctor I’ve seen? A referral to a psychiatrist. Hmmm, well, it must all be in my head then.

  

What @raspberrytalk seizures look like.

 

 

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

Almost lost it!

Almost lost it big time at the doctors today, the stupid reception lady told my husband to walk up a flight of stairs. When my husband said to her I don't think I can manage the stairs she giggled and said just take your time...WTF

doesn't end there my husband is stubborn so tried doing the stairs, I couldn't leave him to get help so I started getting very angry and verbal. eventually someone ca...me along and asked if we where o.k and I said no.

The lady said why didn't you tell the receptionist you can't do the stairs both me and my husband replied and said we did. i said the trouble is they never notice the stick that husband has to use.

Cut this long story short my husband ended up collapsing on the stairs....

The doctor was amazing, she even took us out the back when it came to us leaving.

 

After this happening today I am wondering how many people don't see my husbands stick or the fact he struggles with every step he takes.

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.

HELP

I personally think when someone becomes a carer there should be some kind of help offered to you automatically. But it's not and it can be difficult to know what help is out there and most of all where to find it.

I have been my husbands carer for nearly 3yrs now. Our doctor knew I was my husbands carer but at no point did she tell me about any help that is out there for me. I don't know if it was lack of her knowledge of such help or if she just couldn't be bothered.

It was back in May that I was given a leaflet for

 I had briefly looked at their website before but was not sure if they would or could help me. I ended up emailing them and I got a response very quickly, they even told me who would be assigned my case. Within a few days she contacted me and within a few weeks she came to see. Well since meeting her she has helped me and #raspberrytalk with so much and
has helped us get in touch with other organisations and got both me and #raspberrytalk assessments done.

She referred me for some CBT and I had my 1st session this month. She has also helped with so many other things and most of all she's given me support.

Somewhere on the internet I found out about a mentoring programe/scheme for new carers (but can't remember where). It's done through an organisation called timebank.
Anyway, I signed up for it and my mentor is very good, full of advice and her husband has fibromyilgia. So she has an understanding of what I'm going through and what #raspberrytalk is going through too.

I have also been in touch with Carers UK,


who I signed up with at the beginning of the year. There is a lot of support on there too.  If you sign up with them you can use the forums on there, which is mainly other carers and it's amazing how supportive they all are.

I was even part of carers week 2013 and shared my story.
I only found out about them because of using the internet and I'm sure there are other carers that are not lucky enough to have the internet. So how are we carers meant to know about help that is out there?

Something needs to be done about this. So many carers struggle without the help they truly need. I myself have struggled without help or support. This is not good because it can and has effected my own well being.

But what can be done?

 

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

 

 

 

The Balancing Act

I have touched on this subject before but I feel the need to talk about it again - The actual act of balancing taking care of someone else and looking after myself.

Some people would say no matter what you should always put the person you have to care for 1st, which is what a lot of carers do. But by doing this they are putting themselves and the person they care for at risk, because if say for example you break your foot, how on earth are you going to be able to do the things you normally do for the person you care for.............?

I have only been a carer for a few years now and I'm already seeing and feeling the effects of neglecting my own health. Last June I actually passed out, which is not something that has happened to me before. Also because I have neglected injures I have incurred while taking care of #raspberrytalk my injures have not healed properly and because I have not gone to see the doctor they have not been treated properly either.

However I did go and see the doctor about passing out and they did the usual blood tests, MRI and I was finally sent to a neurologist who put it all down to stress! So I was put on Pregabalin because I was also having stress induced migraines (which is something I will talk about in another blog).

it has really only been in the last few months that I have started try to take care of my own health, which in itself is difficult. Putting my own health 1st goes against my instincts as a person. For as long as I can remember I have always been the sort of person to put someone else's needs before my own well being.

Seriously though, I really need take better care of myself, because I have a responsibility to someone else's health and well being. If my health and well being is not good, how on earth am I going to be able take care of someone else's?

So how do you balance looking after someone else and yourself? I really don't know but I am trying my hardest to balance both. I don't think there is a straight forward answer to this question.........................

Take Care of Each Other
Carer's Vent

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

Here We Go Again

As most of my regular followers know, @raspberrytalk has non-epileptic seizures which he has been having since last may. Those of you that are reading my blog for the 1st time - just read this link seizures.

We have recently been looking after my mother-in-law's cats, Bill and Ben. This morning Bill was acting not like his usual self - he was constanly moewing at us and jumping up onto the bed. Now most people will say he was asking for food, but this is not his way of asking and normally only ever goes on the bed if we're not there or already asleep.
Anyway, at one point Bill was sitting on raspberrytalk's chest and just staring at him as if he was waiting for something to happen....

Well a few minutes later something did happen - #raspberrytalk started to have a massive seizure!
It must have lasted at least 20 minutes - or it felt like that. Unlike epileptic seizures #raspberrytalk is aware of what is happening and can feel everything (his seizures are musclular and extruciatingly painful), but just like an epileptic seizure he can not communicate or do anything about it.

Throughout this seizure Bill the cat stayed with #raspberrytalk - that was until #raspberrytalk accidently kicked him of the bed.
But rather than Bill getting grumpy he just sat on the floor looking at #raspberrytalk. I swear Bill knew this was going to happen and I know most people say cats don't really care about us, but I challange that view. If you saw how Bill is with #raspberrytalk and how he takes care of him, you would too.
Afterwards, while #raspberrytalk was recovering, Bill jumped up on the bed again nuzzled up to him and started meowing again. Moments later #raspberrytalk was off again with another massive seizure, this time Bill was quick enough to jump out of the way.

So how was I coping with all this? I did what I usally do - make sure #raspberrytalk was safe. But inside my heart was breaking because I could see the pain he was feeling during his seizures. This is one of the most frustrating things. I can see he's in pain but there's nothing I can do.
After each of his big seizures, #raspberrytalk had what I call his "aftershocks" - smaller less intense seizures and muscle twiching. After the last big one was over he couldn't move one of his legs and his hands/arms kept twitching and spasming. #raspberrytalk describes this as someone else having control over his hands - a bit like the Seth Green film Idle Hands

As I'm writing this #raspberrytalk is in bed asleep, with Bill on the bed watching over him. It's amazing how much effect having cats around has on you and how you feel. Apparently they actually use cats as therapy in some hospitals.

So that was an interesting morning ... also as I'm writing this I'm listening to some tunes just to take myself away from everything. #raspberrytalk often says he's the one having the health problems, but I'm the one who suffers from them, lol

Joking about it is his way of dealing with it, because I know he's really worried about me and how I'm having to deal with it all. I'm the one that has to keep it together.

And you know what? Sometimes I do feel like I'm gonna go mad or just snap.

Take care of each
Carer's Vent

He's Back........

Many of you that read my blog frequently will know about Rob. For those of you that are new to following my blog, I recomend you read this link - The 3 people I live with - before you read this blog entry.

Rob does not appear much these days, I don't know why. He did briefly rear his ugly head while @Raspberrytalk was doing some "relaxation" breathing exercises at a Psychological Assessement. That was a few months back and I had hoped that that would be the last I'd see and hear from him.
But no such luck. #Raspberrytalk was sitting out in his Dad's garden when he started to feel dizzy. I decided to take #Raspberrytalk into the house and while trying to get him into the house he fell onto his knees, bashing his arm while trying to break his fall. After a few minutes I managed to get him back to his feet and over to the sofa and I just knew he was not right by the way he was breathing. I tried my best to get him to slow his breathing down, but it seemed the more I tried the more he was hyperventilating.
As this was happening I could see that he had clenched his fists and was grinding his teeth. This could only mean one thing ... Rob was trying to come out to play and #Raspberry was trying to hold him back.
While I was trying to calm him down I kept asking #Raspberrytalk to look at me. When he finally did and I saw his eyes, I could see it was Rob and not #Raspberrytalk. It's hard to explain but his eyes change from being kind eyes to eyes that are filled with anger and hatred.
As calmly as I could I told Rob to go away and leave my husband alone. But before I knew it, I was having to restrain Rob/Raspberrytalk because he was trying to hurt himself by hitting his head (which he did do a few times before I had a chance to grab his wrists).
When I did finally restrain him Rob tried fitting back, but I could tell #Raspberrytalk was trying to hold him back too. My husband is far stronger than me and if Rob ever got full control I'd never really be able to restrain him.
After a few minutes #Raspberrytalk pulled me to him and wrapped his arms around me and was crying out through clenched teeth as if in great pain and was squeezing me really tight. What I didn't see until afterwards was that, as always, Rob was fighting back and was digging his nails into #Raspberrytalks arms and scratching him.

While this was going on #Raspberrytalk's Dad was watching it all happen. I could see this was really upsetting him and as soon as I could I went over to him and comforted him. I told him I know it's hard to see, but #Raspberry will be ok. I could see by the look in his eyes that he was scared for his son, frustrated at not being able to make everything better and wanted his son to be well again.
Luckily Rob didn't stay around for too long and he didn't get verbal, which would not have been good.

Fighting with Rob always takes it's toll on both me and #Raspberrytalk. As usually happens he ended up collapsing with exhaustion and having to sleep for rest of the evening, while me, #Raspberrytalk's Dad and Step Mum spent the time dealing with the emotional fallout that #Raspberrytalk's psychological, psychiatrict, neurological and physical events always leave in their wake.

I think there needs to be some sort of training made available for people that have to care for a loved one with these sort of issues, but there seem to be none that I can find that don't have hefty fees attached!
#Raspberrytalk's Dad did say to me that I was doing a brilliant job taking care of his son. Raspberrytalk also told me later that his Dad said I'm a very strong woman. I hope I can stay strong .....

Take care of each other
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.

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carers vent

MY HEALTH

My health has never been 100% but whose health is? I have always suffered with depression and anxiety, and in the past I have also experienced panic attacks - although nowhere near as bad as the ones @raspberrytalk gets. I was also diagnosed with IBS over 10 years ago.

I am also slightly long sighted and at 5' 3" suffer with shortism, as my husband often reminds me :-) lol.

When I decided to be my husband's carer I never dreamt it would effect my health as well and I also never realised how important my health would be to my caring role.

But last June I was given wake up call. I was feeling a little funny in the shower and went to the bedroom to lie down for a moment. But before I got there I keeled over backwards and passed out. I must of been out of it for just a few seconds but it scared the life out of me and @raspberrytalk.

My doctor sent me for the basic epilepsy test and because that came back normal she then sent me for a MRI on my head. Again everything came back normal, so my GP then referred me to see a neurologist. He asked me a few questions and got me to do some balance tests. He then said I collapsed because of the added stress I'm having to deal with. He seemed very concerned about me and said I needed to find a way of having a break from my caring role. He also said in all his time doing his job he's seen a lot of other carers go through the same as me.

So, how is my health now ..... ?

Well, I'm still on antidepressants and have also been taking Pregabalin for stress induced migraines! Also because I suffer with restless leg syndrome I'm currently taking something for that as well.

I have nearly passed out several times since last year. I was in Tesco the other week and almost collapsed again. I have been trying to look after myself but it's been a struggle. I'm still getting migraines but not as often as I was. the trouble is that when I get them I have to go to bed and have to leave my husband alone in his chair in the living room. I find I can't switch off properly because I'm worried about my husband.

So my health is suffering and I really do need to think of my own health because if I'm not, well how on earth can I cope with taking care of my husband? I need to listen to my own advice. I'm always telling others to take care of themselves yet I don't do it myself. I'm sure a lot of other carers have the same problem. As a carer you automatically put the other person's needs and health before your own but, as you can see, this in itself causes the carer to have health problems. Yes, as a carer you need to look after the other persons health and needs, but you must take care of your own as well.

I know it's hard to do but, as carers, we must because we are also responsible for someone else health. I think as carers we actually need to think of our health first. I know it does sound strange, but it does make sense.

When I get my spells I can't do anything for my husband, which is so frustrating and upsetting as well. I currently don't get any respite as we can't afford it, but I do desperately need some. I have contacted a local charity that may be able to help me with that. We'll just have to wait and see.


take care of each other
carers vent