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04/06/2016

Looking for a little help ....

***UPDATE 27/07/16***

We're pleased to say that we raised enough from our crowd funding to get the ramp extended! Just 3m of concrete, but it will change both mine and @raspberrytalk lives.
 
 
 
Our gratitude goes out to everyone that donated. Thank you all so much!
 
 
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Raspberrytalk and I are looking (begging) for a little help.
 
This is the ramp that the council installed for my wheelchair. Hardly subtle! It is a terrible eye soar in our rustic little village :(
 
 
 
 
 

It took over a week to build but, since having it installed, we have not been able to use it very well.
 
While the ramp itself is ok, the problem lies with where the ramp finishes … right next to the side of our car. When it was finished, we never realised what a problem it was going to be until we first started using it with my wheelchair.

The problem is, when in my chair, my wife can get me to the drivers door of the car, but then has to struggle carrying the folded chair across the garden to the boot. If I am being put into the passenger side, it is extremely difficult to get my chair up the ramp kerb and across the garden, in order to get to the other side of our car. In rainy weather this is awful because the grass is sloped and becomes slippery and muddy. It also means that all of our visitors and delivery people coming to our front door have to walk across the garden to get to the path. This is terrible for my mum, who is also disabled and walks with 2 sticks. She has slipped and fallen in the garden several times.

We have tried parking in a different location, but it just means that someone else then parks in our normal space and we have the same problems.
The council wont change it because it was agreed at the time (but like I said we didn't  realise what a problem it was going to be). They say every time we change driver we should just drive the car out, turn it around and drive it back in!

What we want to do is extend the path to the left so it is possible to get my wheelchair to the back of the car and allow others to get to our path without walking across the garden. It only needs about 10ft. We would also like to add some trellis and climbing plants (like jasmine) to the railings to try and hide the ramp from view.
 


It may not seem like a lot, but being on benefits this is not something we'll ever be able to afford.
 
Please help a little if you can and share our link wherever you can.
 
Thank You.
Carer's Vent & Raspberry
 
 
 

15/05/2016

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!? …...

19/03/2016

In Sickness and In Mental Health

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How my husband looks today
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Our Wedding Day

 
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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 1st marriage broke down, several near death motor bike accidents, etc ….).
So, how has all this affected my own health/mental health? Well I’m on medication for anxiety because I have stress induced migraines. I have also developed something called Vasovagal Syncope, which basically means if I get too stressed I can pass out. I also suffer with depression and OCD, which gets really bad when I get stressed out.
I have also been diagnosed with Fibromyalgia, which I am currently not even being treated for, which is frustrating. I also experience hallucinations, which I’ve been told are caused by stress as well. Unfortunately with the life I have there’s no easy way to have less stress in my life….
I do struggle to take care of my husband, especially with the mental health conditions and I do sometimes wish someone else would take over. Then I feel guilty for wanting a normal life and I also ask why all this happened to my husband!? Yes, it’s difficult for me, but just imagine being my husband having to deal with all those different parts of himself and struggling to keep the dark side of himself from coming out and sometimes it will come out and there’s nothing my husband can do to stop it. He then feels all the guilt for whatever he said and did (he doesn’t always remember) … and all this on top of his physical health problems. He is basically having to battle with himself everyday and some days he doesn’t win.
 
Last year, after being bounced around psychiatrists and psychologists (because all his physical problems are apparently in his head!), we were eventually given some couples therapy. Why? Because being my husbands carer and having to deal with his physical and mental health conditions has put a tremendous stain on our relationship. We’re both grateful we received this, but my husband desperately needs help with his rage control issues. We were told to contact Mind, but unfortunately they no longer offer help for this.
So what next? I really don’t know … but what I do know is that my husband needs some professional help with all his mental health conditions, but sadly I don’t think he’ll ever get it on the NHS.
Sometimes I look at my husband and don’t even recognize him because of what his mental health has done to him. If he has a good day I get a glimpse of the man I fell in love with, but unfortunately those days are very few - which is sad and makes me want to cry because I want my husband to be the way he once was ..