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

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

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 

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”.

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

WHO? WHAT?

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

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

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

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

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

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

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

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

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

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

take care of each other
carers vent

Me talking about filming Raspberry's seizure

 

Talking about The Raspberry's fall

 

Having to explain myself :-)

Dream A Little Dream... or Not!

Hubby’s head doctor recently referred him to a sleep clinic after hearing that he has had sleep problems for most of his adult life (he’s 41 this year).

When we received the letter it stated that he would have to be on his own(!). Obviously, with his anxiety issues, agoraphobia, seizures and panic attacks, I was not happy about this. Neither was hubby! And after several emails and phone calls, we eventually got to speak to someone at the sleep clinic, which was at papworth hospital.

They said they had not been made aware of any of hubby’s problems or even that he had a carer. After some discussion of what really happens to hubby, they agreed to put us into a side room off the ward and brought in a fold up bed so that I could stay with him.

 

Hospitals

I don’t know about you guys but I hate hospitals. So, as you can imagine, I was anxious about having to spend a night in one. But I am hubby’s carer and there is no one else able to go with him or care for him. So it’s left to me and I have to put hubby 1^st, which is sometimes hard to do. Seriously though, I really do hate going to hospitals. It’s bad enough when hubby has to go to hospital for various different appointments, but I’ve been to hospital a few times for my own health problems since I was a kid. 

Sleep clinic

Ok rant over :-) 

28^th January was the date of the sleep clinic and I think I was more anxious than hubby. When we got to the hospital there was nowhere to park. It was so bloody busy and typical we had left the wheelchair at home (hubby hates it). We eventually found a temporary parking space and made our way to the main reception and checked in. We asked the receptionist about parking nearer the ward and she said it was because of the time of day.

 

We drove over to the ward … 3 disabled space, all taken … then over to the nearest car park … nothing! We eventually found a “parking space” (basically a gap between a parked car and a barrier) barely wide enough for the car (never mind opening the doors) but was fairly close to where we needed to go. Hubby was gasping for breath and nearly collapsed when we got to the ward desk and we had to check in again. While we were waiting I could see that hubby was getting anxious and needed to sit down. The receptionist noticed this too and got us to go to the day room and wait in there for someone to show us to our room. It’s very rare for other people to notice when hubby is having a spell and it’s nice when people do. It makes my job a bit easier! :-)

 

So, we waited in the day room for what seemed like forever - especially when hubby started to have a panic attack! I did what I normally do and told him to focus on me.

Eventually a hospital porter came and showed us to our room, which to my horror looked just like a normal hospital room and there was only one single bed in there. The room was tiny and the bedding on hubby’s bed was really not fit for purpose. Oh well, that’s the NHS for you. That said, at least we HAVE an NHS, not like any other country in the world … but for how long.

Anyway, we settled ourselves in and had some hospital food ……….. I’m not going to say another word about the food, but those of you that have had the pleasure of hospital food will understand what I’m not saying … lol 

Before we knew it, it was time for hubby to be fitted with some fancy headgear. I’m glad it wasn’t me that had to wear it and sleep in it. I’ve got to admit, I did find hubby’s new headgear very funny - so I had to take a picture of it and tweet it. The face hubby is pulling in the picture is just so funny and says it all. 

 

One of the people that was attaching hubby’s headgear said there was a spare bed in a different part of the hospital if I wanted it. I was puzzled by this because the whole point of me staying with hubby is because I’m his carer and he needs me with him. Anyway I explained to them that me being somewhere else would not make sense at all and defeat the reason I was there……………… 

This left me feeling somewhat angry and puzzled, but maybe they didn’t realize that just because I’m his wife surely I can’t also be his carer? But they were made aware of this and the other nurses seemed to know … oh well.

 

Time For Bed Said Zebedee

Bed time and hubby was all tucked in, video camera running, breathing flow meter was metering and brain scanning thingy was scanning. Not being tired, hubby got out his portable DVD player while I lay down to try and sleep … but annoyingly it chose that exact moment to stop working. He couldn’t read his books on his phone because it would interfere with the equipment, so he had no choice but to go to bed early (it was about midnight). Strangely hubby slept well that night, better than he has in ages. And he fell asleep in 8 minutes according to the computer. Me on the other hand, I did not. I kept waking up to check on hubby. I had to sleep in what they call a cot (basically a fold up bed), this could have been one of the reasons I didn’t sleep at all. I’m so used to being next to hubby and can usually sense if he’s having some kind of spell.

 

The Day After The Night Before

Both me and hubby woke up very early the next morning and I had to get a nurse to give us some more water as we were both really dehydrated. I asked if they could get someone to remove hubby’s headgear so he could shower, but the sleep clinic team/doctors wanted hubby to spend the day doing nap tests.  I just wanted to eat and come home(!), but obviously I also had to stay…………bugger! :-)

For whatever reason the women that set up the 1^st nap test ordered me out of the room. She didn’t even give me a chance to explain that I was hubby’s carer. So I anxiously sat in the day room and went on Twitter and Facebook and had a bit of a chat with some people. Before I knew it hubby was standing next to me … and guess what? Yep, he’d had a seizure while he was having his nap.

This was the point of me being there in case this sort of thing happened!! Grrrrr

But even though it wasn’t my fault that I had to leave hubby alone, I still felt guilty and could only imagined how scared hubby would have felt :-( 

Anyway, I’m not going to bore you with what happened with the rest of the nap tests, except that hubby did have a few more seizures.

 

To Dream A Dream

As much as I hated being at the sleep clinic/hospital, it was worthwhile. Hubby seemed to have stumped the doctor and he will be invited back for further study. He appears to have some symptoms of narcolepsy, but some that completely contradict a diagnosis of narcolepsy.

 

Normally he suffers from severe insomnia (usually he’s up to 3am, 4am, sometimes he will just stay up all night), but at the clinic he went to bed at around midnight and fell asleep in 8 minutes. He slept without waking for 6½ hrs ... but never once reached REM/dream sleep (the human brain usually runs on a 40 minute-ish sleep cycle - light sleep, deep sleep, dream sleep and round again every 40 minutes or so).

 

During the nap tests throughout the day, Hubby had to lie down and try to relax/fall asleep for 20 minutes or so. Normally people don't reach dream/REM sleep while napping (day dreams don't count). But, just to be different, Hubby jumped straight into dream sleep all 4 times - without even realising he was asleep!!! 

Apparently this is not right :-) 

He also shows signs of cataplexy, which would explain some of his falls. Cataplexy is the sudden loss of muscle tone in arms and/or legs that causes falling. It can also cause non-epileptic seizures, which as you all know he’s been getting for a while. It can also cause loss of muscle tone in the face causing difficulty with speech. Cataplexy happens in 70% of all cases of narcolepsy and is extremely rare without it, although it can happen when people come off of/go onto high doses of antidepressants.  

Sooooo, ….. the doctor was very interested and wants to do some follow ups. Trust me to be married to someone that has strange sleep patterns. 

Take care of each other,

Carer’s Vent

The Importance of Support

The Importance of Support 

Support is something that we should all have no matter what the support is for. It is especially important to get it from the person you love most, whether that is boyfriend/girlfriend/wife/husband or just a relative that you are close to.

 

I’m on a lot of groups on Facebook that are for people that have Fibro and ME and I’m constantly seeing posts from people saying how they’re not getting the support they should from their other half or family.

I can never get my head around this. I really don’t understand how people that are meant to love you can be this way. I’ve seen posts from people saying “my partner say’s I’m not ill or in real pain” and there are also people on these groups that have no one at all caring for them … and yet all these people, all in such pain themselves, are all so supportive to other members of the groups.

My heart goes out to each and every one of you and I can’t thank you all enough for the support and kindness you’ve all shown to both hubby and me.

Just recently hubby was having a really bad time of it with his depression and loads of people on these groups sent him both public and private messages of support, just to let him know they are there if he needed to talk. These same people have also given me words of encouragement when I’ve needed it and general support.

My hubby’s family have also all been so very supportive. I know for a fact they don’t feel like they’ve done much, but they have(!), because they have been there with emotional support for hubby and me when we needed it the most. Some of the things hubby says I know are really hard for them to hear (like when he talks of killing himself), but by staying strong and letting hubby talk things out, it gives him the strength to keep on fighting through the pain and depression.

Of course they have also helped us out in other, more obvious, ways and we’re really lucky that they’re in a position to do this.

My mother in-law gave us money to buy a more suitable car (a Fusion 2) that is easier for hubby to get in and out of and I can learn to drive in.

My mother in-law and hubby’s step dad also came down recently to take hubby to the hospital for his spinal tap. They even changed their plans when the spinal tap was re-arranged to the following week (on the day!).

While they were down they witnessed hubby having a seizure. Hubby’s step dad helped me get hubby to our bed and his poor mother watched in horror while her baby boy (he’s 40! J) thrashed about, juddered and shook in pain.

Just having them here made such a difference, to me especially when hubby’s step dad said I did everything I could for hubby. I later got hubby’s mother to sit on the bed holding his hand and I’m hoping this made her feel a bit better - I know it made hubby feel better ‘cos he said so J

I know you’re not supposed to, but I really do love my mother in-law to bits. And the same goes for hubby’s step dad. He even drove down to take hubby to his tribunal hearing for his DLA.

My father in-law and hubby’s step mother have also been a tower of strength. In March we went to visit them when things really got on top of us both and our beloved Babbie Cat had just died L. They were both really supportive and I got to talk about things – plus I felt as though I could take my eyes off hubby for a while and know he would be ok, giving me a little time for myself.

My father in-law will ring every so often to see how we both are and he also reads this blog (hello pops) and sends hubby emails asking how he is and how I am. He bought us this new laptop (which I immediately nabbed for writing my blogs ‘cos it’s really nice J) and has also said he’ll pay for my driving lessons – which will likely cost him a small fortune because it takes me ages to learn things (hehehe) – and has bailed us out with the bank when our ESA benefits were late going in and we’d over spent on silly luxuries like food and heating, etc.

Again I know other halves are not supposed to, but I also love my father in-law to bits and hubby’s step mother.

 Even hubby’s brothers try and help wherever they can, either by mending our broken DVD recorder so we can sell it for extra cash, or just by listening to hubby when he needs to rant. 

I must mention our friend Terry who is a true friend. He’s given us lifts when we’ve needed them when he could – even though he live MILES away from us! He took us to hubby’s ESA assessment - and any regular readers of this blog will know that ended up with an ambulance being called and hubby being rolled out of the building in a wheelchair! I really do think if Terry wasn’t there that day I would have gone to pieces.

He’s also come over to visit when he can and always lets me and hubby talk about how we are feeling. Last time he was over he even gave me some fatherly advice. Thank you mate, you really are true friend. You’ve seen hubby and me at our worst and have stuck by us. We will have to arrange something for the New Year. 

Support is so important. Not just for the person that is ill/disabled, but also for those that care for them. I’d like to take this opportunity to say a special thank you to all of hubby’s family for all their help and support ever since I’ve been lucky enough to be a part of their family.

 

Take care of each other and have a good Christmas

Caresvent



 

 

ME/CFS Clinic

Hiya everyone, thanks for your support. we’ve just got back from the ME/CFS clinic and they’ve told hubby they can’t treat him because of his mental health issues.

So what is the point in these so called specialist services if there just going to turn round and say we can’t deal with your issues.

I’m getting so frustrated at the fact that no one is helping hubby and just saying they can’t help. Meanwhile he his mental and phyical health is declining more and more each day.

useful links:
http://www.uptodate.com/contents/seizures-in-adults-beyond-the-basics
http://www.nhs.uk/Livewell/Epilepsy/Pages/Ifyouseeaseizure.aspx
http://neurology.stanford.edu/divisions/e_19.html
http://www.fibromyalgia-associationuk.org/ http://www.facebook.com/groups/UKFibromyalgia/
http://www.mind.org.uk/help/diagnoses_and_conditions/panic_attacks http://www.arthritiscare.org.uk/Home
http://www.mind.org.uk/help/diagnoses_and_conditions/mental_illness

http://www.carersuk.org/

 

SEIZURES

Some of you may remember my blog entry 6th-september-2012-we-had-a-somewhat-interesting-shopping-trip-in-morrisons/. Well my hubby has had 2 more days like this.

 

On 2^nd October 2012 my husband was having his normal acupuncture session at Broomfield hospital. For some reason the Pain Clinic thought he would get some benefit from it. Well at his 1^st session he almost passed out, which does sometimes happen apparently. Anyway we agreed to give it another go and the next 2 sessions went without a hitch thankfully, but his 3^rd session did not go so well…

Within a few minutes of the needles being put into his neck I could see he was not feeling well. I asked if he was feeling faint and sick and he replied yes. I went to reception and found a familiar face, a nurse called Suzie; she had previously helped my husband when he nearly fainted a few weeks earlier. She got someone to find Ed the guy that puts the needles in my hubby.

By the time Ed and Suzie came into the room my hubby was feeling a lot worse. Ed took some of the needles out but this did not seem to help. He had to take all the needles out, but by this time hubby was worse and ended up collapsing to the floor. Usually I’m the one that has to steady him, but on this occasion Ed and Suzie managed to ease my hubby to the ground.

But this was not the worse thing to happen. While hubby was on the floor he started to go into what all the medical people were calling a seizure. Me, Ed and Suzie tried our best to make sure my hubby didn’t hurt himself, we also spoke to him calmly. After a few minutes of us doing this, can’t remember who, but someone got a medical team which included a doctor. I cleared the way for them while they worked on my hubby. Again my hubby had to be given oxygen, it always scares me seeing him having to have that done. The medical team also gave him an injection of something to calm him and even scarier they ended up giving him a glucose drip. They also checked his blood pressure and blood sugar levels. His blood pressure was very high and his blood sugar was very low. Which was weird, considering he’d had breakfast. I always make sure he’s eaten before we leave the house. I also carry a bag that has water and cereal bars in it, I even have a mini first aid kit.

While all this was going on my heart just felt like it was going to jump out of my chest. I also felt like just crying with frustration. While my hubby was having the seizure he looked like he was in pain and scared. I’ve spoken to him about this and he says it “does hurt a bit”; he’s very good at playing things down though.

Anyway, the medical team decided to send my hubby to A&E. By this time hubby’s seizure had stopped, but I thought it was a good idea as we were already in the building. Also because the seizure had lasted more than 5 minutes it was a good idea. They rolled him through the corridors on a bed with me and a nurse running along beside it. While in A&E hubby had his blood pressure taken again and the doctor gave him a very quick check over. His blood pressure had now gone back to normal, so once the whole drip had gone into his arm they were happy to release him. I know the hospital was probably busy, but I think they should have done more intensive checks on him – at least some blood tests – especially as this was the second time this had happened to him.

Hubby in A&E                                                                                                                          

So we went home and just tried to relax. Hubby was exhausted and I was too, mainly with mental exhaustion. I had hoped when this happened a month ago in Morrisons that it was a one off.

The next day (3^rd October 2012) we had to get some shopping. Hubby was feeling like his normal wobbly self and said he was ok to go out. So we went to Morrisons. When we first got there hubby had bit of a panic attack while I was in the toilet. When I came out he was in the corner breathing heavily. As always I reassured him that he was safe and I wouldn’t let anyone hurt him. He seemed to calm down and all seemed to be going well. We had gotten everything off our shopping list and were now just browsing. Hubby loves cooking and likes to see what bargains we can get. Before he got ill he used to cook and bake a lot, now he just tries to teach and supervise me (in HIS kitchen!).

While we were walking around the shop, hubby’s legs had been very shaky and he’d been feeling a little lightheaded. While we were down the cooking ingredients aisle hubby stopped in his tracks and started to feel really dizzy and shaking. Unlike last time, loads of people asked if we were ok. At first I thought we would be so I told everyone we were fine. But then I could see that hubby was worse than he was letting on and was about to fall to the floor. Hubby kept saying “I’m ok, I’m fine” and I kept saying “No, you’re not. You’re going to go over any minute now”.Just at that point a nice older lady asked if I needed some help and this time I replied “Yes, can you get a first aid person”?

As she went off to get someone I felt hubby’s body start to collapse. I pushed our trolley to one side and did my best to slow his fall as he collapsed to the ground. As I was easing hubby down I shouted out “oh shit!” and when I landed on the floor I bashed my knees and legs.

My legs after having an argument with the floor in Morrisons.














I know I should have made sure I was safe, which I was, but I couldn’t stand there and just let my hubby collapse on the floor. I don’t know if I do it correctly but I get behind him and put my hands under his armpits and try to take some of his weight and ease him to the floor.I don’t know where I find the strength to be honest, but I somehow do.

Don’t know how it happened, but hubby managed to hit the floor in the recovery position! Very strange.

The security guy in Morrisons came over to me and asked what was going on. By this time hubby was having a seizure just like the day before and even though I’d seen this before, I was still shaking inside and terrified for my hubby. It wasn’t long until I saw a familiar face. It was James from the meat counter, who is a first aider. It was a relief for me to see someone I sort of knew, James was the guy who looked after us last time.

We made sure my hubby was safe while he was having the seizure and like last time James called for an ambulance. The seizure must have lasted at least 20 minutes and while waiting for the 1^st response unit, I just kept talking to my hubby calmly. At one point my hubby started to have a panic attack while still having a seizure. He became terrified at the sight of the security guard’s boots and all the people around him. He kept grabbing hold of me and hiding his face in my lap and trying to hide behind me (while still lying on the floor).

This carried on for a while and then just stopped. My hubby started shouting and punching the floor and then had yet another seizure. This one didn’t last as long thank god, but he was also clawing at the floor tiles – I thought he was going to rip his nails out.

The 1^st response guy had now finally arrived and when he asked me questions I nearly couldn’t answer because I was just so mentally exhausted, but I finally managed to give him the info he needed. Again hubby’s blood pressure was checked and was high and blood sugar low, but what was even stranger was how, when the 1^st response guys did hubby’s blood sugar, the blood just shot out of his finger and was just like water. I can still remember seeing blood run down my hubby’s hand (the day before in the hospital they had to try twice because they couldn’t get any blood out!). Hubby had yet another short seizure and then just lay there staring at the ceiling, looking a bit out of it. We all just sat with him, the paramedic asking a few question until hubby was feeling a bit better. Then we all helped him to a sitting position, then to his feet and we hobbled over to the café for cup of coffee while the paramedic continued to observe hubby to ensure he was really ok.

Hubby was saying he felt fine, but I insisted that they still take him to the hospital. He eventually agreed and the paramedic called for some transport. I would not normally have insisted on this, but this was hubby’s second seizure in row.

We sat waiting in the café, drinking coffee and hot chocolate (free! Result). The paramedic said it would be quite a while because the A&E was really busy that day. Ross and the paramedic discussed if it was really worth going, apparently all they would do was the same tests the paramedic had done on site and observe hubby. So we ended up not going to hospital, but the paramedic said he would follow us all the way home to make sure we were ok, which was very nice of him.

I was so thankful to be going home, because I was again feeling exhausted and so was hubby.

At the moment we don’t know what is causing the seizures. Hubby has had an EGG, which we are going to get the results for on Monday when hubby sees his doctor. I will keep you all posted.

I would like to this opportunity to thank all the people on the Facebook groups, James and Richard (security gaurd) at Morrisons Witham, Suzie, Ed and the Medical Team at Broomfield Hospital who attended to my hubby.

Changes

I love my husband very much and hate what is happening to him and how it is changing him as a person. I do worry that the person I fell for will disappear and I’m left with a person I don’t know.

For my husband these days there is never a good day. Instead there are a bit better days and extremely bad days - like the one I wrote about in my last blog entry! I just wish none of this was happening to him and we had a normal life.

Because of my husband’s illness we can’t really plan anything, we have to take each day as it comes. Like last Thursday, hubby said he was o.k. leaving the house, but he obviously was having an extremely bad day. Well morrisons wouldn’t have called an ambulance if he was "o.k".

So our lives have changed a lot since he got ill. I know it’s not his fault, but sometimes I just wish we could get back to the life we had a few years back, before any of this happened. Not only is it changing how we live it is changing who I am as well. In some respect it’s making me a stronger person and I’m finding out things about myself which I never knew before. Mine and my husbands relationship has changed as well, we’ve always been very close and we’re now even closer.

But there are some days I wish I had never met my husband and I wonder how different my life would be. It’s very frustrating and confusing feeling this way because I love my husband so much, he’s my best friend and I have grown so much as a person just by being with him. There are also some days when I just want to leave; because of the stress and the fact that I feel like the person I love is disappearing.

When I feel like this I remember that my husband can’t escape from what he’s going through and that he needs me. As hard as it is I need to be strong for him and not let his illness beat him.

Some useful links :-

http://www.fibromyalgia-associationuk.org/
http://www.facebook.com/groups/UKFibromyalgia/
http://www.mind.org.uk/help/diagnoses_and_conditions/panic_attacks
http://www.arthritiscare.org.uk/Home
http://www.mind.org.uk/help/diagnoses_and_conditions/mental_illness

http://www.carersuk.org/

 

Thursday 6th September 2012, we had a somewhat interesting shopping trip in Morrisons!

Before we even left the house hubby said he felt a bit dizzy, my automatic reaction to this was to do any shopping another time. But hubby insisted that he would be o.k and felt the need to escape the house. I was not 100% convinced that he was o.k, but I knew I wouldn’t be able to convince him otherwise. He can be very strong willed sometimes.

So, we made our way to Morrisons.

He was still a little shaky when we arrived, but we manged to get some bits of fruit and then made our way to the fresh meat aisle. Hubby was not looking good and was feeling extremely dizzy. He was holding the trolley and suddenly fell to his knees. I managed to help him up and got him to sit down on one of the meat cabinets (which are cold!). It was either this or hubby collapse on the floor, which he nearly did before I manged to get him on the cabinet. I usally carry my handbag with me which has water in it, but on this day I forgot to bring it(!) – which was typical just when hubby needs it. A sit down and some water does sometimes help.

I could see my hubby was getting worse, but I couldn’t leave him because he was almost collapsing on the floor. I felt so useless and helpless and typically there were no staff down the aisle. Loads of people walked past doing the normal stare and huffing because they can’t get to the meat. Human beings can be so uncaring and just plain stupid. Eventually a little old lady came over to me and asked if I needed some assistance. I of course said yes and she went and got a guy from the butchers counter. He asked what was wrong and I tried my best to explain and then asked him to get my hubby some water. The last time I had seen hubby this bad was in the doctor’s surgery about a month ago when he collapsed in her office!

Anyway, while waiting for the guy to get some water another member of staff came over to us. Hubby just kept saying to her “I’m fine”, which he clearly wasn’t because when we tried to get him into a chair he ended up on his knees. Luckily this lady was a first aider.

By this time I was trying to be calm and keep hubby calm, but my heart breaks everytime this happens to him. Even though he tells me that me just being there to catch him, talk to him or just hold his hand is more than enough and a great comfort, I still wish I could do more.

The worst was yet to come. We eventually got my husband into a chair, which he sat in for a few minutes before collapsing on to the floor! He felt so dizzy and just collapsed forwards out of the chair. The first aid lady quickly put him into the recovery postion and the meat guy got something soft for his head (a jacket from somewhere) and a duvet to wrap him in appeared from somewhere! (found out later they keep one in the office “just in case”!). The floor in the meat aisle at Morrisons is VERY cold.

By this time the meat aisle had been blocked off with a screen at one end and roll cages at the other. We had gathered quite a crowd and the other customers were staring and moaning that they couldn’t get to the chicken, etc. Well all I can say to you all that were trying to walk down the aisle and moaning because they couldn’t – WTF is up with you all? You have eyes and could see my hubby was on the floor in a state. At least you can go shopping without having to stop because of pain in your whole body. At least you don’t panic at the thought of leaving your house. You don’t have panic attacks while out shopping or lose control of your whole body and get so dizzy and faint that an ambulance has to be called. Just go away and leave people in peace.

Anyway ….. While my hubby was on the floor he started hyperventilating and his whole body started to shake and judder violently. Whenever this happens I try to calm him down and hold him, but it never feels like I’m doing enough for him. Especially as I can see he is in pain while this is going on. I really do wish this had never happened to him and I really don’t wish it on anybody else. For me watching it’s scary, heartbreaking and so frustrating (because I do feel I can’t help), but must be so much more so for the person it’s happening to. Even though I can see my hubby’s pain, at least I can’t feel it. I really don’t know how he manages to keep going.

The Ambulance came very quickly (within 10 minutes!). It was both an ambulance and the first response guy. These 3 guys did such a amazing job. They had to give my hubby oxgen and checked his vital stats. Blood sugar, blood pressure, hooked up an ECG and heart rate monitor and checked his temperature. By now I was so scared for my husband and terrified I was going lose him. The first aid lady ended up doing me a nice sweet cup of tea because she could see I was going into shock and I could actaully feel myself going into shock. While she was getting that for me I was still sitting on the floor with my hubby just either stroking his head or arm or leg. They had him laying on his back while they worked on him. He started convulsing and arching his back and neck, his arms went really rigid and the guys had to hold him down to stop him hurting himself. I was trying to hold his head down so he didn’t hurt his neck and our eyes locked. He looked so terrified.

I always try my best to hide how scared I am from my hubby, but he recently told me he can always see the change in my eyes. Then it all just suddenly stopped apart from his usual customery leg twitch.

My cup of tea arrived and I was very thankful that the lady got it for me. It’s strange how a cup of tea can help in that situation.

Hubby eventually got the all clear from the ambulnce guys. All his stats had returned to normal. They did nearly take him to the hospital, but once they could see him walking (if you can call it that) under his own steam with just a little handholding from me, they were happy for him to go home. We had to sit with them in the ambulance for a bit while they did some paper work and hubby got a nice sweet cup of tea from the meat guy as well (he even brought it out to the ambulance). We had bit of a chat with the ambulance crew while hubby got settled and fully recovered. Then we thanked them for taking such care of my hubby and said goodbye .These guys really do an amazing job and put you at ease.
Of course by this time hubby was insisting on finishing the shopping. Well you can guess what my response was! A big fat “NO WAY”!!!

To the 2 members of staff in Morrisons Witham and old lady that helped us, thank you all so very much.

Here’s some useful advice from my hubby:-

The floor in the meat aisle at Morrisons is very cold.
I suggest nobody lays on it shaking and juddering for an hour, dizzy, in pain and hyperventilating! It’s not a good idea.
It annoys the other customers, who will crowd around you moaning that they can’t get to the chicken and they get pissed off when the staff put screens up, blocking the aisle while 2 ambulance crews work on you.

SO DON’T DO IT!
—————————–
At least he still has his sense of humour!

Some useful links :-
http://www.fibromyalgia-associationuk.org/
http://www.facebook.com/groups/UKFibromyalgia/
http://www.mind.org.uk/help/diagnoses_and_conditions/panic_attacks
http://www.arthritiscare.org.uk/Home
http://www.mind.org.uk/help/diagnoses_and_conditions/mental_illness

Here's a link to a poem by an MS suffer :-
https://docs.google.com/document/d/1uZcRppidrzK8Ryl9YvZJcA9LalpVbqK1_89-fdk07ns/edit?pli=1

MEET THE 3 PEOPLE I LIVE WITH

My husband

He can be sweet, caring, has a witty sense of humour, he’s playful, cheeky and generous. He’s very easy going and you can talk to him about anything.
He can also be very opinionated and can come across as very arrogant. He always thinks he’s right (well, he’s male!).

He’s a very strong person. He’s experienced a lot, has been through a lot … and has managed to come through the other side mostly in one piece.

But all in all he’s one of the loveliest people you will ever meet.

On the rare good days he is still this person. But since his health problems began those good days are becoming few and far between.

Rob

This angry, arrogant dick is the complete opposite of my husband. He’s very aggressive and always wanting a fight. 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). I should make it clear though that he never has and never would hit a woman.

I’ve only know him for 16 years, but my husband has been living with Rob since he was about 18 (about 22 years). He first came to live with my husband about 6 months after his first motorbike accident, which included a head trauma.

He hasn’t always been called Rob. When my husband was younger, Rob would normally come out to play after several drinks. Back then my husband would just refer to him as The Rottweiler. He would fight anyone that annoyed him, wouldn’t back down from anyone no matter the size, or number(!) and he would get my husband in to a LOT of trouble.

But the last time I saw Rob properly was at the beginning of the year. He hasn’t been around much since my husband’s health has declined. In some ways this worries me because it could mean my husband is losing his fight and drive …. and hope.

Rose

In my last blog I spoke about my husband becoming like a child. When my husband becomes like this we call this person Rose. My husband used to get junk mail addressed to Rose, so when this started happening to him we both agreed to nick the name. My husband gets very upset and embarrassed after Rose comes out to play and when he’s himself again he always says “I’m acting like a bloody little girl” – hence Rose!
She’s a very frightened child, gets scared and cries and even talks quietly and in struggling sentences … just the way children do when they’re scared and upset. So I will talk to her just like you would to a child and give her hugs and make sure she knows I won’t let anyone hurt her.

Once I’ve got Rose calm, I then try and bring my husband back to the surface. This is easier said than done, but I eventually mange to get him back … though he will usually be beaten down version of himself.
While I don’t really mean he has split personalities, to me it’s as if I am dealing with 3 different people. When these changes happen the expressions on my husband’s face look different, the look in his eyes (which have always been very expressive) are very different … and even the way he talks and his tone of voice are completely different.

It may seem strange to some people, but given these extreme changes in my husband’s behaviour, using these names just helps both of us to cope with it all a little bit better.

Some useful links:

http://www.fibromyalgia-associationuk.org/
http://www.facebook.com/groups/UKFibromyalgia/
http://www.mind.org.uk/help/diagnoses_and_conditions/panic_attacks
http://www.arthritiscare.org.uk/Home
http://www.mind.org.uk/help/diagnoses_and_conditions/mental_illness
http://www.meassociation.org.uk/