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.

 

 

Benefit scrounger…………….Yeah Right

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

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

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

@carewelluk
@carersweek

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







 

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

BLADE ……………….. no, not the film

Firstly I’d like to say, I hope you all had a good Christmas and a stress free one.

 

As I’ve probably said before, my hubby is a very stubborn man. No matter how many times I tell him not to do certain things he still insists on doing them. One of those things is handling sharp objects … like, for example, the razor sharp blade from our food processor!

 

Well on the 23rd December 2012 one of my worst fears happened - hubby tried to “help” me by drying up some things. One of those things was, of course, the razor sharp blade of our food processor. If I had known he was drying this up I would have taken it off him immediately because he has bad muscle spasms.

Which is exactly what happened. Hubby had a spasm and yes, you guessed it, the blade cut right into his thumb. He yelped and I asked what happened and he replied, “I’ve cut my bloody thumb” (bloody is the right word to describe it). At first we thought it was just a small cut, so I quickly put his thumb under a running tape of cold water. But the second we did, hubby sucked in a sharp breath as the skin opened up and blood came pouring out!

It was clearly a lot worse than we thought, so we wrapped a tea towel around it, held it up and applied pressure. I sat him down and got him some water while I rang 999. I know there are a lot of cuts being made to NHS, so the lack of proper help from 999 was not surprising.

 

I nervously explained what had happened and was then asked my address and phone number (which I could not remember!). I ended up passing the phone to hubby - he was feeling faint but was able to talk – and the lady on the phone told him that a clinical nurse would ring us back as soon has they could. Meanwhile hubby was still bleeding, despite the fact he was holding it up and applying pressure to it. By this point I was getting more and more stressed out and felt so helpless that I couldn’t do anything except talk to hubby and give him water. I eventually got so stressed and fed up that no first response had come, or that no clinical nurse had rang back, that I decided to check hubby’s cut and bandage it up myself. 

The cut was even worse than we thought, blood was just flowing out like god knows what and it was very clear to both me and hubby that he had indeed damaged an artery. So I did the only thing I knew to do and that was ring 999 again. This time the operator was some rude man who asked me the same questions as the other operator and then just said that if the first operator thought it was necessary to send a first response unit then they would have contacted the nearest one and it would be on the way as soon as it was available. He then hung up.

By this time it had already been an hour since hubby had cut his thumb, so you can imagine that I was getting more and more stressed and feeling even more helpless and most of all I felt responsible for what had happened. Not long after I had put the phone down the clinical nurse rang us and again we had to explain what had happened. The nurse eventually said that we would have to make our own way to A&E because has far as they were concerned it was not a life threatening injury.

 

I was now very pissed off and stressed about hubby. But we rebandaged up hubby’s thumb and made our way to A&E. We waited a few hours and were then seen by a nurse who didn’t even look at hubby’s wound, but sent hubby to have an x-ray. That was done very quickly. Apparently the lady doing the x-ray had to wipe up a big puddle of blood because they had to remove the bandage to get a clear image. The second she removed all the bandage blood poured out all over the x-ray table. Hubby said it was very funny as the lady ran back and forth to the controls to get her images and then to redress his wound J

Anyway, after this was done we were then sent back to the A&E waiting room. It seemed like forever waiting in there and eventually hubby had to go to the loo. Typically the second he was inside, his name was called. I told the nice lady that hubby had just gone to the loo and while we waited for hubby we joked about the fact that his name had been called while he was in there. If we’d known that was going to happen, I would have told him to go 2 hours ago!

 

Anyway, she took us to a room and examined hubby’s thumb. She said that she thought he may have damage an artery and a nerve, but was not sure because there was so much bleeding and this made it difficult to see what was going on. She then told us that hubby needed to seen by a hand specialist to confirm what she thought. She then went off to talk to one of the hand specialists and we waited for someone to take us to the plastic surgery ward.

An orderly finally came by and when we eventually got to the ward we had another long wait. Both me and hubby were very hungry, when the accident happened we were about to prepare our Sunday lunch, so neither of us had eaten since breakfast. Oh well at least it wasn’t our Christmas dinner … lol 

When hubby was eventually seen, the surgeon told us that hubby had severed both his radial nerve and artery, which would need to be fixed with surgery. He was given a tetanus booster and the surgeon then said we would have to come back tomorrow for hubby’s surgery. Great news! After 7 hours of waiting around we’re told “come back tomorrow”. Not really the way we wanted to spend Christmas Eve.  

Oh well these things happen …………. don’t they?
 

 Hubby’s thumb before surgery.

 

We got up early on Christmas Eve, picked up some last minute bits of food shopping, took it home and then made our way back to the hospital. This time we made sure we had some food and water with us. And it’s a good job we did really because it was another long wait. We arrived at 10am, even though we’d been told to arrive between 11 and half past. But it was a 5 hour wait before hubby was called to go into surgery. They had no changing rooms, so he had to get changed into his gown in a room that had a bath in it. Not good, but at least we still have an NHS. Hopefully this will not change, but with Ca-moron running things we just don’t know.

Anyway, it was about 3pm when hubby was taken into surgery, which would be done under a local anaesthetic and would involve Microsurgery. I was still nervous about hubby having surgery and the next hour seemed like the longest hour of my life. I was also still feeling guilty about what had happened. But has my hubby says, it was not my fault and I can’t stop him from being him.

 

Once hubby’s surgery was done he got changed back into his clothes and was told to sit in the waiting room and have a drink and wait for someone to give him some paper work. Hubby told me how the surgery went - he was told that they couldn’t repair the artery, but they repaired the nerve, although they could not guarantee he’d have full feeling in his thumb ever again. It was almost another hour before a nurse finally came with his antibiotics and said we could go.

After what seemed like a very long day we finally made our way home, which after spending 2 days in the hospital seemed like heaven.

Even though my hubby says it wasn’t my fault, I do and will probably always feel responsible for what happened to him.

 

Happy New Year and take care of each other.

Carersvent.

 

http://www.sja.org.uk/sja/first-aid-advice/wounds-and-bleeding/bleeding.aspx

 

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



 

 

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