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

My Health Part 2

Some of you may remember me writing a blog entry about my own health. For those of you that didn’t, you can view it here http://carersvent.blogspot.co.uk/2013/06/my-health.html.
I wrote that back in June last year and since then a lot has happened.

I think I will start with my mental health. Well I finally got referred for some counselling, but unfortunately the only kind of counselling available on NHS is CBT. But I thought I would give it a go anyway …. and you know what? It has actually helped!
I have become a bit calmer as a carer and I have also worked through some of the guilt I had bottled up. So in this instance CBT has helped, but the only trouble with it is that it only deals with the hear and now and not the past.
So what about my physical health? Well I personally don’t think that has changed much. It’s no worse or better, but I do now at least have some answers.
For the past few years I have been having problems with my legs. To cut a long story short, I saw a neurologist back in January this year and he has given me a diagnose of Fibromyalgia. Yep, the dreaded F word! Those of you that read my blog and have followed my blog will know that my husband @raspberrytalk suffers with this condition as well.

So is this just a strange coincidence or is there more to this condition? This is something I will talk about more in another post.  

Also, I have been given a diagnose of a condition called syncope, which is basically another word for fainting spells (well that's how I understand it).
So, I have some answers to what was and still is going on with my health. Meanwhile I am still having to care for my husband full time. One of the things my CBT lady wants me to do is to have more me time, which I have done, but I have only been able to do this when family were visiting. Yes, having time for myself is important, but it is hard to do when you are the prime carer for someone with not only physical health conditions but also mental health problems.
Since last June I have had loads of blood tests. If I remember right some of my markers were slightly high, so the docs wanted to check them a month later. When they rechecked them they were then showing up normal, so that was the end of that.

 

 

The neurologist put me on vitamin D and he also requested I have some more blood tests! Hopefully these will give the doctors and me some more answers.
I also have a had a psychiatric assessment because I was having hallucinations. The psychiatrist basically said there’s no real help they can give me because they no longer do counselling …. what a waste of time that was …. never mind.
But it did give me opportunity to talk about things, however briefly, and I did get prescribe something to help me sleep. I now no longer take SERTALINE but instead I am now taking MIRTAZAPINE at night to help me sleep … seems to helping so far.

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?

 

Flu Jab refused

Last Friday me and @raspberrytalk booked in our flu jabs which as far as we are both concerned are eligible for them.  

This is who the NHS say should be eligible for the flu jab.  

As most of you will know @raspberrytalk has ME and Fibromyalgia. 

When we went in on Tuesday 5^th November the nurse politely explained to @raspberrytalk that she had been told by the practice manager that he was not eligible for the flu jab. WTF is almost the words I said to the nurse. @raspberrytalk was bemused and asked why this was the case and she replied that he doen’t have any neurological conditions or an immune system problem!

He then had to explain to the nurse that he has ME and Fibromyalgia, which are both Neurological disorders … and we then discovered that neither of them, nor his arthritis or seizures are listed as “active” problems on his file! 

As far as me and @raspberrytalk are concerned he should be eligible for the flu jab, but the nurse said that none of that information was on his records and she then explained that  even if it was, the surgery do not recognised the fact that ME and Fibro are neurological disorders. She also said that @raspberrytalk’s latest blood tests showed that his immune system is currently normal, so he wouldn’t get the jab because of that. 

 

Well at this point I was very pissed off and so was @raspberrytalk to say the least.

Anyway I had my jab done. 

@raspberrytalk explained to the nurse that he was concerned about the overall care he could expect to receive from the GP’s at the surgery if they don’t consider ME as neurological (i.e. they think it’s all in the mind).

I am also concerned about this as @raspberrytalk’s ESA renewal is coming up very soon. As most of you will know it was a real battle for him to get any kind of benefits.

If we don’t have the support of our GP and other health professionals, what hope is there for us?

It feels like we are fighting a battle that we will never win and it’s a battle we are fighting alone ………… 

We have been invited in by the surgery to “discuss our concerns”(!) I will update you all on this.

 

Take Care of Each other

Carers Vent

 

If like @raspberrytalk you have ME or Fibro and been refused flu jab please contact me on @carersvent

 

UPDATE: 7th November 2013

 

spoke to our GP and apparently according to the records they received from our last surgery there is no record of @raspberrytalk being given a 100% confirmation that he has ME or Fibro.

 

Also the only active problem on his records is his mental health problems and nothing about his arthritis which is a active problem.

 

really not sure where we stand or what we can do any advice would be welcomed.

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

Same S***, Different Day....

it seems as soon as I start to relax a bit and stupidly think my husband is not going to have some kind of spell ...

... he has a spell! Luckily we were at home and there were other people in the house to help. I just popped to the toilet and while I was gone, Raspberry being Raspberry, decided to "help" by going to the kitchen to start making us all some drinks. I came back and went to the kitchen to check on him ... only to find him half passed out on his perching stool, leaning back against the fridge gasping for breath! Thank God his stool was there (thank you Social Services!)or my husband would have ended up on the floor - or worse still, he could have badly banged his head on the floor or worktop on his way down!

The thing is, he could have been there for ages. I only walked into the kitchen to check on him because I sort of sensed that something was wrong.

This is something I've seen many times before, my husband collapsed with exhaustion, but I can usually get him over to the sofa or the bed before he's completely gone.
This time however, my husband's whole body simply decided it was not going to work anymore. As I was checking he was ok and still conscious he slumped forwards and his whole dead weight fell against me. I couldn't move him and just had to stand there bracing his entire weight on my legs ....ouch!!

Luckily, just as I was sure my legs were going to buckle, my husbands mother noticed what was going on and could see that my legs was shaking with the strain of holding my husband up. She quickly called to my husband's step dad who came running in and rescued us both. As he took my husband's weight he turned to me and said "He's bloody heavy, isn't he!?".

My husband was now completely unresponsive and he still couldn't move either because of the muscle paralysis, but he was still awake because his eyes were open and he remembers it all clearly. No matter how many times I see this happen it still scares me.

A few minutes later my husband suddenly jerked upright on the stool and became semi responsive - almost as if half asleep (or very drunk! lol). We managed to get him to his feet and move very unsteadily into the living room and sit him in a chair. Unfortunately, within a few minutes of him being put into the chair he slumped down and started to have a seizure. I tried my best to keep him safe and keep him in the chair, but as his entire body was flexing and thrashing about because of the violent nature of his seizures, he slowly slid down the chair and ended up on the floor.
I asked his step dad to get some water because I know when my husband comes around he will need a drink. These seizures are very muscular in nature and always leave my husband completely drained as if he's just run a race. He is also usually in great pain afterwards with several pulled muscles.

At one point while my husband was seizing, I looked at my mother inlaw and could see a mix of fear and frustration in her eyes. She turned to me and said "They're getting worst aren't they?".
It's sad to say, but after my husband had stopped seizing and we'd managed to get him back into the chair, I had to tell her that what she saw was not the worst and in fact it was quite a small attack. I held her hand and asked if she was o.k (stupid question, I know!) and told her "I know it's scary to see but he's o.k now".

Typical of these seizures, my husband was now completely back to normal (aside from a few pulled muscles and being exhausted) and I got the pair of them to hold hands ... it was all I could think to do.

So there you go; Same s***, different day ... but at least this time I had extra support and someone to actually help me move my husband (Thank You!!).

I hate that this is happening to my husband. And I really hate to say it, but when he has his spells it's not just him they affect. I'm also drained afterwards, but it's more emotionally rather than physically. I feel selfish when I say it, but my husband says I shouldn't be so silly. He says "of course you're drained. You have every right to be and shouldn't feel bad for feeling like that. I wouldn't wish having to deal with all this/me on my worst enemy!".

Then we both usually get upset, there are "I love you"s and even tears because of "all the pain" we're causing each other ... and it all becomes very slushy, damp and emotional, lol

Take Care of Each Other
Carers Vent

Are you prepared to be cared for?

So this week is Carers Week and the theme this year is are you prepared to care?

So I thought it would be an idea to write a blog entry about the other side; are people with carers prepared/ready to be care for?

I don't know about other carer's, but I have a small battle everyday when caring for @raspberrytalk. He means well but he does make it difficult. For example, he hates having to use his wheelchair. He'd rather fall to the floor than be in his wheelchair; and when he does fall (as he so often does!), I feel responsible! I don't know why, but i do. I do sort of understand why he hates going in his wheelchair, but I just wish sometimes he would see that it makes my life a little bit easier, as well as his own.

The other day he tried doing some light gardening and ended up rolling down our front garden. I only just about managed to get him back into the house. This is the trouble with raspberrytalk; as soon as my back is turned he will try and do something he can't actually physically do and the smallest of tasks will make him exhausted for rest of the week.

Just before christmas he cut his thumb very badly because he was trying to help me dry some things up. We ended up spending christmas eve in hospital waiting for him to have a small op on his thumb to repair his severed nerve and artery. I really don't want to go through that again......

The above are only a few examples of part of my battle caring for raspberrytalk. I think the reason he's like this is because he's the sort of person that never wants another person caring for him. I'm sure he's not the only person like this. I know when I'm not well with the flu or something I hate people fussing and trying to do everything for me.
I also think raspberrytalk is still trying to come to terms with the fact that he is ill and always will be. He will never be the person he used to be, nor be able to do the things he could before. I know for a fact he finds it frustrating that I have to do so much for him. He has also told me that he wishes that I didn't have to take care of him.

Just recently, we were having dinner with his mother. Raspberrytalk's arms decided to stop working properly, shaking and twitching, and he couldn't lift them. There was no way he could hold his knife and fork, so I had to feed him. Afterwards he told me how humiliated he had felt ... not just because I'd had to feed him, but also because it was in front of his mother. He said it's one thing to be falling apart, but worse to let the people you love see it.
He got so upset by this I held him and told him it's o.k. What else could I do?

CARERS WEEK
CARERS UK

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