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.
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.
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.
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:
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..............
Some of you may remember me writing a blog entry about my own health. For those of you that didn’t, you can view it herehttp://carersvent.blogspot.co.uk/2013/06/my-health.html. I wrote that back in June last year and since then a lot has happened.
I think I will start with my mental health. Well I finally got referred for some counselling, but unfortunately the only kind of counselling available on NHS is CBT. But I thought I would give it a go anyway …. and you know what? It has actually helped! I have become a bit calmer as a carer and I have also worked through some of the guilt I had bottled up. So in this instance CBT has helped, but the only trouble with it is that it only deals with the hear and now and not the past. So what about my physical health? Well I personally don’t think that has changed much. It’s no worse or better, but I do now at least have some answers. For the past few years I have been having problems with my legs. To cut a long story short, I saw a neurologist back in January this year and he has given me a diagnose of Fibromyalgia. Yep, the dreaded F word! Those of you that read my blog and have followed my blog will know that my husband @raspberrytalk suffers with this condition as well.
So is this just a strange coincidence or is there more to this condition? This is something I will talk about more in another post.
Also, I have been given a diagnose of a condition called syncope, which is basically another word for fainting spells (well that's how I understand it).
So, I have some answers to what was and still is going on with my health. Meanwhile I am still having to care for my husband full time. One of the things my CBT lady wants me to do is to have more me time, which I have done, but I have only been able to do this when family were visiting. Yes, having time for myself is important, but it is hard to do when you are the prime carer for someone with not only physical health conditions but also mental health problems.
Since last June I have had loads of blood tests. If I remember right some of my markers were slightly high, so the docs wanted to check them a month later. When they rechecked them they were then showing up normal, so that was the end of that.
The neurologist put me on vitamin D and he also requested I have some more blood tests! Hopefully these will give the doctors and me some more answers.
I also have a had a psychiatric assessment because I was having hallucinations. The psychiatrist basically said there’s no real help they can give me because they no longer do counselling …. what a waste of time that was …. never mind.
But it did give me opportunity to talk about things, however briefly, and I did get prescribe something to help me sleep. I now no longer take SERTALINE but instead I am now taking MIRTAZAPINE at night to help me sleep … seems to helping so far.
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.........................
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right some of my markers were slightly high, so the docs wanted to check them a month later. When they rechecked them they were then showing up normal, so that was the end of that.