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28/12/2012

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.
 


 

16/12/2012

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



 
 

19/11/2012

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

10/11/2012

Easier said than done; the full story

A neurologist recently told me that I should take better care of myself and find time away from hubby, just to do something for myself.
 
This is something a lot of people having been saying to me and if hubby was getting DLA this would help towards getting me some respite. But the DWP and ATOS are still saying there is nothing wrong with my hubby. They keep saying he’s not a risk of falling and doesn’t need constant care. God knows how they’ve come to that conclusion.

So anyway, at the moment there is no real way I can get any respite. Hubby’s family are scattered and the members of the family that do live nearer (still an hours drive!) work all the time. We have a friend that has offered to help, but he lives even further away and has his own health problems too!
I do seriously need to find a way of getting a break because my health has now been affected. The whole reason I was at the neurologist was because back in July I passed out and collapsed to the floor! Poor hubby had to drag me across the floor and lift me onto the bed. No idea how he managed that.

My doctor had me tested for epilepsy and also sent me for an MRI, but both of these came back clear. I still feel like I’m going to pass out, so she referred me to the neurologist.

After asking some questions and giving me a quick examination, he told me that stress was the cause of my health problems. He kept stressing to me that I need to do something for myself and get some kind of break from caring for hubby. He also said that in all his time at doing his job he’d seen a lot of people who are carers having stress related health problems. He said he sees it a lot in people who are caring for someone with long term chronic disorders like ME, Fibro, etc. He also said that I seemed like a very caring a compassionate person, but do really need to take care of myself.

I knew I was stressed out but didn’t realise the extent I was stressed out! I also kept saying to myself that I’m just a bit run down and I’ll be ok if I watch some TV for an hour or so. I’ve been and have dealt with stress before but it has never affected my health to the extent it is now. The neurologist is right, I do need to care of myself, but I feel guilty when I do something for myself or try and have time away from hubby.

Just this week I was in bed all day with a serve migraine and just felt guilty not being able to take care of hubby the way I should be. The neurologist did say my migraines were more than likely caused by stress and he has prescribed me Pregabalin for them.

To all you other carers out there remember to take care of yourselves and try not to feel guilty about it. I do sometimes think people forget about the carers. I also think we carers forget we are human too and need support and time for ourselves. If we get ill, how can we care for the person we’re supposed to care for?

I know this is easier said than done, because there is limited help out there, but we need to care for ourselves.

Take care

http://www.dwp.gov.uk/policy/disability/personal-independence-payment/

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/

http://en.wikipedia.org/wiki/Neurologist

http://www.meassociation.org.uk/?page_id=1685

http://www.nhs.uk/conditions/MRI-scan/Pages/Introduction.aspx

http://www.nhs.uk/conditions/Migraine/Pages/Introduction.aspx

http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?condition=Pain&medicine=pregabalin&preparation=Pregabalin 50mg capsules




08/11/2012

Easier said than done

Been told today by a neurologist that I'm nearly passing out and having migranes because of the stress I'm going through. He also told me that I need to take better care of myself and find time for myself. Easier said than done when I'm not getting the surport I should be getting (DWP are saying hubby is o.k) which he is not. Just wish the family wasn't so scattered. I do however need to do something or I'll be no use to hubby.


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

07/10/2012

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 2nd 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 1st 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 3rd 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 (3rd 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 1st 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 1st 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 1st 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.




11/09/2012

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 :-

08/09/2012

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

23/08/2012

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/

The day my husband became a child

12th July is not a day I will forget easily, it was the day I saw my husband become a child and it was also the day of my husbands WCA/ESA ATOS assessment.

This assessment had been rescheduled several times by ATOS, the 1st time was because my husband had requested it be record, then it got rescheduled because the recording equipment was apparently broke. Then when we did get an assessment the lady who was to do the assessment was not medically trained, so she was unable to do my husbands assessment.

So we were sent back home and had to wait for another appointment. Despite what you may have seen or heard not all these assessments are done by doctors or someone who is medically trained.

After months of rescheduling the day of my husbands assessment was finally here, this was a small weight of our shoulders, especially after months of extra stress on top of the stress we were already going through dealing with my husband declining health.

We were lucky enough to have a very good friend of ours give us a lift to the testing centre (which as a sign that says animal testing). Even before my husband got to be seen, he started having problems. He fell twice in the reception area, couldn’t catch his breath and also felt sick and dizzy. I managed to get him into a seat and our friend got him some water. If you’re a carer you will have some idea of how I feel when my husbands gets in this state, for those of you that are not, it’s one of the most heartbreaking things to see someone you love in pain and in a weakened state. You also feel frustrated for them and guilty because it’s them and not you.

During the whole assessment my husband was juddering and feeling unwell and in pain, he was also feeling very anxious. I’ve sort of gotten used to seeing my husband like this, but inside I still feel like screaming, crying and grabbing that magic wand and making him healthy again. But there is no magic wand, so all I can do is be there when he falls to pick him back up, comfort him when he as a panic attacks and just generally be there for him. Has hard as it is as a carer you need to stay strong inside.

During the assessment my husband was requested to walk, he was allowed to use his stick, but I was not allowed to assist him. Well even though my husband was using his stick this did not stop him from falling to the floor. I sat with my husband until he felt ready to get up, this can sometimes be a few minutes, but can sometimes be longer.

The actually assessment was now over, what a relief for my husband and myself, like I said earlier in this blog it’s been a very stressful time for us both. While the ATOS Doctor was finalising some bits before we could go, my husband had another fall. This time he had hit his head and arm on a column and started to have a major panic attack, he was also crying at this point. I can sort of deal with my husband falling but when he gets panic attacks his whole personality changes and on this day he changed into what can only be described as a frightened child. This is the most difficult thing for me to see and deal with, because what I’m seeing is not my husband. I’ve been with my husband for 16 years now and he was one of the strongest people I knew, I mean mentally not just physically.

When I did managed to move my husband away from the column, I only managed to get him near a chair. By this point my husband had become frustrated, angry and started to slash out by thumping the chair and what was even scarier he also started to bang his head against the chair. While all this was going on I was trying to keep calm and doing what I usually do when my husband gets like this. Which is give him soft hugs and encouraging words. This usually works straight away but on this day my husband was so far gone. In the end my husband grabbed me and held me close to him until his breathing became normal again and I carried on talking to him and stroking his head gently.

The more I see my husband change into this other person, the more scared I become that the person I used to know will disappear completely. I hope this doesn’t happen because I fell in love with my husband for being the person he was when I met him.

I’d love to hear your comments especially from other carers.

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/

FALLING!

Since my husband has got ill, he has been falling over more and more often. Most of the time I’m able to steady his fall, but sometimes he falls so suddenly I’m unable to catch him or steady him. This might sound strange/silly but when he first started falling, it seemed to be on certain days, but it has now become more frequent and is happening nearly every day.

Fortunately my husband has not had any seroius injuries from falling, but this dosen’t mean my heart is not pounding each time it happens and I’m so scared for him. It’s also heartbreaking seeing the frustration and anger  on his face  because his body is failing him. What scares me most is the thought that next time he’s going to get serious injuries.

This week has been an especially bad week. He must have fallen at least 6 times, one of which was while he was at his CBT appointment which was at the doctors surgery. He hit his head on the wall and I thought he had badly injured himself, so I asked if someone could check him over. Because it was lunch time all the doctors where at lunch. The receptionists did manage to get in contact with one of the doctors by phone, but instead of them asking how my husband was or what his health problems were, they asked how old he was. When he heard he is only 40 the doctor said he would check him over, but we would have to wait for 30 minutes ……… Needless to say we left the surgery, rather than waiting. I am wondering if I should put a complaint in to the surgery.

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/