WOW … what a lovely car park! ……

update 03/08/15 My response to Warner and reading there letter.

 

***UPDATE 01/08/15***

Just received a response from Warner Leisure Hotels basically saying thanks for the feedback and that they feel are expectations are too high.......also they have blamed me for inappropriate conversation on twitter and facebook.....WTF they also feel we should use another holiday company......I'm disgusted with this response considering in my letter there was pictures of a damp room and dirty room........not good for a company that have fancy adverts..........I very rarely complain and when I do I get such a bad response..........not sure whether to write back or not..........either way warning to you all don't complain to much with warner they don't like it.........

***UPDATE 25/07/15*** - In response to this blog and comments on twitter, Warner have responded by simply blocking @carersvent from both their Facebook and Twitter pages. Well done Warner. A great way to treat customers when YOU always say you welcome ALL feedback, both good and bad.


@raspberrytalk will be guest blogger today.

Those of you that are regular readers of the blog will know that @carersvent and I have had a few issues with Warner Hotels over the last few years. Water running down walls, dodgy fixtures and fittings, stained carpets …. even the joys of a half bath!
So, after our last visit we were offered a free holiday by the General Manager at Corton. Yep, FREE! 4 nights including food. They were going to have a £1.5m refit in 2015 which included new lodges with sea views and new beach garden lodge suites.
Initially we were told we’d get one of the cliff top lodges with a sea view because they wanted to WOW us and show us what they could REALLY do.
But there was a delay in getting sent the confirmation of the offer, so I can only assume that by the time we booked only the beach garden suites were left.
But hey! Free holiday, so no complaints, but no Wow yet.

So we went down last week for our wedding anniversary and first thing we noticed on arrival was the disabled bays right next to reception. Great you say? Yep …. but these bays were once normal single bays. They have been painted yellow and had a wheelchair added …. but hey, wait a minute, these bays are actually narrower than a normal standard bay. In order to get numbers up they have squeezed the lines closer together! When we came out of reception after getting our keys I could barely get the car door wide enough to squeeze in. NOT a WOW by any stretch (and I’m sure there are planning regs about the required size of disabled parking bays …. ).
So … we got our keys and went over to the beach garden and it was really nice! Our first little wow.

 

It was nice and quiet and had a seating area in the middle for just chilling out. All of the apartments faced into the garden and all had their own seating areas ……. well, all except nos. 1 and 2. Due to the poor layout design, apartments 1 and 2 were set back to allow a stair case to the 1st floor apartments. I’m sure with a little more thought and some jigging around this could have been avoided. But that might just be the layout designer in me (I did it for 13 years!), besides which there was probably costs and other issues involved.
In any case, apartments 1 and 2 didn’t have seating out front facing the lovely gardens. And even if they did, the view from no 2 would be blocked by the side of the adjacent apartment. ……… So guess where we were? Yep, No. 2!
Definitely NOT a WOW!

Well in we went … the apartment was actually very nice. Prefab, but still nice. Well decorated, TV in both the sleeping area and seating area, Tea & Coffee, mini fridge, safe. Everything you would expect from a normal room/suite. Of course I would expect this as the basic level of fit out in all of the rooms, not just the “premium” suites/lodges. Maybe I’m just spoilt.
Anyway, next on the agenda. Our “private patio”. Ah ha! This will make up for the loss of view out front. I was looking forward to this. BIG wow coming I expect …….

Oh dear….. Oh dear, oh dear oh dear.  Here is where it all fell down.
We stepped out of the lovely bi-folding patio doors on to a nice deck. But was it private? Errmmmm ….. no. It was built in the car park!
Now I don’t mean it faced the car park. I mean it was IN the car park. The same idiot designer that had stepped the building had removed some parking bays and designed a deck area that extended out INTO the car park. And no, not even a fence to make it “private”.

 

 

And to make matters worse they couldn’t even be bothered to make it accessible from the car park. We parked right next to our deck and had to walk out of the car park and all the way around to the other side of the building in order to get in. The very least they could do was add some steps from the car park up onto the deck!
What’s the opposite of wow!? I don’t know, how about Duh!? WTF? Are you sh****g me!!? Yeah, one of them I suppose.
So we went back inside determined to make the most of it. Sam checked the bed – 2 singles zipped together. Pretty standard stuff. We had phoned in advance and asked for a mattress topper because the zip always sticks in me. Nothing there (non-wow).  
So we went to see the manager. After speaking to 3 different people on reception we finally got told that no managers were available … but then the Head of Sales came out. She nodded and ummed and erred and said thanks for the feedback about the deck.
Sam then mentioned about the mattress topper…. No record of our request (non-wow)… and they don’t actually do mattress toppers for the doubles (non-wow). But we could have an extra duvet put under the sheet….. Hmm ok, but hardly a wow.
Then Sam mentioned that it would have been nice if someone had offered us some help with our bags when we arrived. At which point the lady perked up a bit and asked who had checked us in? We spent a few minutes describing 6 or 7 possibilities from all the staff wandering about, but couldn’t agree on who it was.
Well apparently there is a porter service and it should have been offered when we checked in. Another non-wow, but we’ve been to other Warners and have NEVER been offered a porter service! …. all together now “non-wow”!

Well we weren’t offered a different room or anything like that, but she did give us some vouchers for lunch. Of course these couldn’t be used for everything (i.e. the stuff you might actually want, like a bacon and brie panini or any drink). No these could only be used for specific items on a special, very limited, menu. A tuna sandwich, a slice of victoria sponge. Nice, but not what we wanted for lunch. … oh and I think a baked potato was on there too.
We’d also requested a couples table in the same phone call as the mattress topper, but yep, you’ve guessed it, no record of that either (non-wow). However the young chap giving out table numbers in the restaurant was very accommodating and made sure we got a good table.

Overall we had a relaxing and enjoyable time, but I can’t really say we were wowed:-
The room was nice, but that patio bugged the hell out of me. We never used it and instead took our coffees over to the chairs in the middle of the garden. Nice, but a lot of walking back and forth for this disabled guy. When every step you take is painful, having to walk 100m just to use the toilet is like running a marathon (not to mention how bloody annoying it is to have to keep going back and forth whenever you want to “quickly” grab something). 
The service in the restaurant was great as always. Our waitress even went and hunted down some grated parmesan for my meatballs and pasta, even though it wasn’t on the menu!
However the food was … erm … nice. OK. Don’t get me wrong, by no means was it bad. No, it was lovely. … But it wasn’t stunning. We’ve stayed at several of the other Warner hotels and the food has always been top notch. It’s one of the things we enjoy about Warner. But this was … nice. It just seems to have lost it’s edge since last year.
Swimming pool is still lovely (although the steps are far too step), sauna was just what we needed too. Unfortunately the steam room was out of order. Oh well, we can’t have everything. 
All in all an enjoyable time …. but I was certainly not Wowed by any stretch and to be honest I don’t know if I’d go back.

 

 

 

 

 

Importance of Supportive people

 

Those of you that are regular readers of my blog know that a that i wrote about the importance of support http://carersvent.blogspot.co.uk/2012/12/the-importance-of-support.html

In this blog entry I am going to be talking about the need to have only supportive people  in your life when you are a carer. My husbands family have been so supportive and i know if i need to talk I can go to them. there are also a lot of carers groups on Facebook, the people on these groups are so supportive and they never judge me either. I am thankful that these groups are out there and i am thankful to my husbands family, don’t know where I would be without all of you.

  

I recently spoke to a member of my family and they said i make everything about me. to cut a very long story short this person has not actively kept in touch with me over the years. Also when i have told them about what i am going through they have replied with sorry to hear that but we all have our problems………..you would think they would ask if there is anything they can help me with or just let me know i have their support. this has not been the case and when i spoke to them earlier this week i ended up telling them to F off out of my life if they think i am selfish.

I know some of you will say “but they’re family”, but as someone who is a carer I need to surround myself with supportive people and not negative people. I don’t have the energy to deal with negative people or people that are just not supportive.

 

Special Thanks to

@raspberrytalk

@recoverycastle

@carersconnected

@carersuk

All my husbands family

MIGRAINES! - Not just another "headache"

I normally write about #raspberrytalk's health and how I am dealing with what he is going through, but today I am actually going to talk about one of the health problems I have and have had for a long time. Migraines!

Migraine Pathophysiology

 

 

 

 

 

 

 

What is a migraine?

Well, here is a link from the migraine trust:-
factsheet-migraine-what-is-it-10504

As you can see there is a lot more going on than just an ordinary headache! For years I didn't realise that what I thought was a head cold/headache was actually a migraine. In some ways I'm one of the lucky ones because I get the warning signs before I get "the migraine from hell" as I call it.
The last one I had was a few weeks back and I carried on as normal for as long as possible, but by day four I ended up in bed in agony because I hadn't listened to my body!

I often get the full blown migraine which, if you read the above link, you'll know is a lot worse than just a "normal headache". It's very debilitating.

When I get mine full blown, I can't move or do anything else, lights and noise are a nightmare for me. My head feels like it's got a build up of pressure but it also feels like someone is tightening screws or perhaps is trying to cleave my head in two with an axe! Sometimes I feel like drilling a hole in my head to let the pressure out, lol. And some occasions even just breathing when lying in bed can be a painful nightmare as well.

I don't how old some of you guys are but there is an old 80's film called Scanners and this is how my head feels. Scanners Head Exploding Clip  yeah I know it's gross but I think a visual was needed......... lol

What triggers migraines?

http://www.migrainetrust.org/migraine-triggers

My triggers are mainly stress or too much sugar. I do try to avoid sugar for other health reasons and I am on several different pills for stress and anxiety. Since I was put onto Pregabalin I've not been getting migraines as often, but I do still get them. This time last year I was getting migraines at least once or twice a week. But when I was having them that often they were not as severe .... you can't win really. Oh well.

For those of you that also suffer with these horrible little head niggles, here's a link to some of the treatments that may help:-

http://www.migrainetrust.org/treatment

So next time someone you know is having a migraine, have a little sympathy. And remember; Yes, it is a form of headache, but it's a lot more severe and it can be very, very debilitating as well.

take care of each other
carers vent

www.migrainetrust.org

GUILT

Here We Go Again

As most of my regular followers know, @raspberrytalk has non-epileptic seizures which he has been having since last may. Those of you that are reading my blog for the 1st time - just read this link seizures.

We have recently been looking after my mother-in-law's cats, Bill and Ben. This morning Bill was acting not like his usual self - he was constanly moewing at us and jumping up onto the bed. Now most people will say he was asking for food, but this is not his way of asking and normally only ever goes on the bed if we're not there or already asleep.
Anyway, at one point Bill was sitting on raspberrytalk's chest and just staring at him as if he was waiting for something to happen....

Well a few minutes later something did happen - #raspberrytalk started to have a massive seizure!
It must have lasted at least 20 minutes - or it felt like that. Unlike epileptic seizures #raspberrytalk is aware of what is happening and can feel everything (his seizures are musclular and extruciatingly painful), but just like an epileptic seizure he can not communicate or do anything about it.

Throughout this seizure Bill the cat stayed with #raspberrytalk - that was until #raspberrytalk accidently kicked him of the bed.
But rather than Bill getting grumpy he just sat on the floor looking at #raspberrytalk. I swear Bill knew this was going to happen and I know most people say cats don't really care about us, but I challange that view. If you saw how Bill is with #raspberrytalk and how he takes care of him, you would too.
Afterwards, while #raspberrytalk was recovering, Bill jumped up on the bed again nuzzled up to him and started meowing again. Moments later #raspberrytalk was off again with another massive seizure, this time Bill was quick enough to jump out of the way.

So how was I coping with all this? I did what I usally do - make sure #raspberrytalk was safe. But inside my heart was breaking because I could see the pain he was feeling during his seizures. This is one of the most frustrating things. I can see he's in pain but there's nothing I can do.
After each of his big seizures, #raspberrytalk had what I call his "aftershocks" - smaller less intense seizures and muscle twiching. After the last big one was over he couldn't move one of his legs and his hands/arms kept twitching and spasming. #raspberrytalk describes this as someone else having control over his hands - a bit like the Seth Green film Idle Hands

As I'm writing this #raspberrytalk is in bed asleep, with Bill on the bed watching over him. It's amazing how much effect having cats around has on you and how you feel. Apparently they actually use cats as therapy in some hospitals.

So that was an interesting morning ... also as I'm writing this I'm listening to some tunes just to take myself away from everything. #raspberrytalk often says he's the one having the health problems, but I'm the one who suffers from them, lol

Joking about it is his way of dealing with it, because I know he's really worried about me and how I'm having to deal with it all. I'm the one that has to keep it together.

And you know what? Sometimes I do feel like I'm gonna go mad or just snap.

Take care of each
Carer's Vent

Let's go out for a meal!

Recently me and @#raspberrytalk celebrated our 9th wedding anniversary and #raspberrytalk decided we should go out for a meal. We were staying with Raspberrytalk's dad in Scotland, who had his 70th birthday earlier this year. I will be 40 at the end of this year so #raspberrytalk thought it would be great to do a combined double Birthday and anniversary meal, which I thought was very sweet of him.
But, as always, at the back of my mind I was worried that while we were out he may have a seizure, panic attack or, worse still, Rob might come out to play which would not be a good thing to happen in public!
Actually Rob coming out to play is never good. I never know how to respond to him because no matter what I say he ends up verbally attacking me.

Anyway we found a nice hotel restaurant and, because it was mid-week, I thought it would be not too busy ... which luckily it wasn't.

Raspberrytalk's step mum made the booking for us and when we arrived they showed us the table reserved for us which was, typically, slap bang in the middle of the room.
#raspberrytalk likes to sit with his back against a wall and be able to see the exits. This is not a new thing as he's always been that way since he was young. But recently with his onset of severe anxiety issues and mental health issues, a small matter like this can often set off a serious panic attack or worse!
However, his step mum was already on the ball before I could even say anything and she immediately turned to #raspberrytalk to ask where he'd prefer to sit. This was great because I could see that he'd already started to tense up as soon as he'd spotted the "reserved" sign on the table. He had a quick look around the room and chose a table in the corner and I could feel he had started to relax and calm down.

So we got seated at the more suitable table and it was relatively quiet. All seemed o.k with #raspberrytalk, but it wasn't long until his body decided it was not going to work properly.
It started with his arms. The muscles were already hurting and arms were shaking, when they suddenly decided not work at all (muscle paralysis). They dropped to his sides and he couldn't move or feel them. After a few minutes they suddenly jerked up and started working again, but his right elbow was locked. His shoulder worked, his wrist and hand worked, but try as he might he could not bend his elbow.
While all this was going on I was talking to #raspberrytalk and he was worried that I would have to feed him again as sometimes happens at home, but we were in public in front of his Dad! He was getting very upset, frustrated and embarressed and all I could do was tell him not worry and not to get too upset if that was going to be the case. I got up and just hugged him and he started to feel better.
I can't even begin to know how #raspberrytalk feels when his body does these things, I just know that he looks scared and I'm scared for him. And I'm also very frustrated because there's nothing I can do.

Eventually Raspberrytalk's arms decided to both work properly again, just in time for him to have his starter, which was a relief to me and to #raspberrytalk. I know how embarrassed he gets when I have to feed him.

We were having a very nice evening, chatting and laughing and #raspberrytalk managed to have his starter and main course before his body once again started to not work properly.
This time it was his eyes that decided to play silly buggers. They very suddenly became extremely sensitive to light. I have migraines so I know just what it's like when you become sensitive to light and I was worried that #raspberrytalk was going to have a seizure. Sometimes he becomes extremely sensitive to light and sound just before having a seizure and we've learned to use it as a pre-warning. But luckily on this occasion it wasn't the case and after I gave #raspberrytalk another cuddle and shielded his eyes for a bit, the sensitivity to light went.

I don't want to sound selfish or horrible, but I do sometimes wish these things didn't happen, especially when I'm trying to relax. Unfortunately these things happen randomly, which is one of the hardest things to deal with. At least if there was a pattern I could handle things better and work around them, preplanning what we can and can't do and where we could go.
But this is not the case and we are both slowly learning to deal with things as they come. We're both still trying to come to terms with what's happening to him and #raspberrytalk is still trying to accept that there are somethings which he simply can't do any more. His mind is willing, but his body is just having none of it! lol
I just sometimes wish I could take five minutes to relax and not be on red alert constantly. I know this sounds horrible, but it's how I feel ... and I feel guilty for feeling like this, which just adds to the stress! I'm sure other carers out there must feel the same, especially carer's that look after people with invisible illnesses.
But there are no magic wands to make it all better - hence the blog! My opportunity to vent some of my frustrations ... and hopefully give some peace of mind to anyone else out there feeling some of the same things.

I would like to thank Raspberrytalk's dad and step mum for all their love, support and kind words they've given us over the years ... and for putting up with us both!

Take care of each
Carer's Vent

MY HEALTH

My health has never been 100% but whose health is? I have always suffered with depression and anxiety, and in the past I have also experienced panic attacks - although nowhere near as bad as the ones @raspberrytalk gets. I was also diagnosed with IBS over 10 years ago.

I am also slightly long sighted and at 5' 3" suffer with shortism, as my husband often reminds me :-) lol.

When I decided to be my husband's carer I never dreamt it would effect my health as well and I also never realised how important my health would be to my caring role.

But last June I was given wake up call. I was feeling a little funny in the shower and went to the bedroom to lie down for a moment. But before I got there I keeled over backwards and passed out. I must of been out of it for just a few seconds but it scared the life out of me and @raspberrytalk.

My doctor sent me for the basic epilepsy test and because that came back normal she then sent me for a MRI on my head. Again everything came back normal, so my GP then referred me to see a neurologist. He asked me a few questions and got me to do some balance tests. He then said I collapsed because of the added stress I'm having to deal with. He seemed very concerned about me and said I needed to find a way of having a break from my caring role. He also said in all his time doing his job he's seen a lot of other carers go through the same as me.

So, how is my health now ..... ?

Well, I'm still on antidepressants and have also been taking Pregabalin for stress induced migraines! Also because I suffer with restless leg syndrome I'm currently taking something for that as well.

I have nearly passed out several times since last year. I was in Tesco the other week and almost collapsed again. I have been trying to look after myself but it's been a struggle. I'm still getting migraines but not as often as I was. the trouble is that when I get them I have to go to bed and have to leave my husband alone in his chair in the living room. I find I can't switch off properly because I'm worried about my husband.

So my health is suffering and I really do need to think of my own health because if I'm not, well how on earth can I cope with taking care of my husband? I need to listen to my own advice. I'm always telling others to take care of themselves yet I don't do it myself. I'm sure a lot of other carers have the same problem. As a carer you automatically put the other person's needs and health before your own but, as you can see, this in itself causes the carer to have health problems. Yes, as a carer you need to look after the other persons health and needs, but you must take care of your own as well.

I know it's hard to do but, as carers, we must because we are also responsible for someone else health. I think as carers we actually need to think of our health first. I know it does sound strange, but it does make sense.

When I get my spells I can't do anything for my husband, which is so frustrating and upsetting as well. I currently don't get any respite as we can't afford it, but I do desperately need some. I have contacted a local charity that may be able to help me with that. We'll just have to wait and see.


take care of each other
carers vent

DWP Response to video's

A month or so ago @raspberrytalk sent the following video's to DWP and today we received a letter asking him to attend a atos assessment again. Has you can see from these videos @raspberrytalk has major panic attacks and seizures.

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



 

 

ME/CFS Clinic

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

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

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

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

http://www.carersuk.org/

 

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

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

http://www.carersuk.org/