He's Back........

Many of you that read my blog frequently will know about Rob. For those of you that are new to following my blog, I recomend you read this link - The 3 people I live with - before you read this blog entry.

Rob does not appear much these days, I don't know why. He did briefly rear his ugly head while @Raspberrytalk was doing some "relaxation" breathing exercises at a Psychological Assessement. That was a few months back and I had hoped that that would be the last I'd see and hear from him.
But no such luck. #Raspberrytalk was sitting out in his Dad's garden when he started to feel dizzy. I decided to take #Raspberrytalk into the house and while trying to get him into the house he fell onto his knees, bashing his arm while trying to break his fall. After a few minutes I managed to get him back to his feet and over to the sofa and I just knew he was not right by the way he was breathing. I tried my best to get him to slow his breathing down, but it seemed the more I tried the more he was hyperventilating.
As this was happening I could see that he had clenched his fists and was grinding his teeth. This could only mean one thing ... Rob was trying to come out to play and #Raspberry was trying to hold him back.
While I was trying to calm him down I kept asking #Raspberrytalk to look at me. When he finally did and I saw his eyes, I could see it was Rob and not #Raspberrytalk. It's hard to explain but his eyes change from being kind eyes to eyes that are filled with anger and hatred.
As calmly as I could I told Rob to go away and leave my husband alone. But before I knew it, I was having to restrain Rob/Raspberrytalk because he was trying to hurt himself by hitting his head (which he did do a few times before I had a chance to grab his wrists).
When I did finally restrain him Rob tried fitting back, but I could tell #Raspberrytalk was trying to hold him back too. My husband is far stronger than me and if Rob ever got full control I'd never really be able to restrain him.
After a few minutes #Raspberrytalk pulled me to him and wrapped his arms around me and was crying out through clenched teeth as if in great pain and was squeezing me really tight. What I didn't see until afterwards was that, as always, Rob was fighting back and was digging his nails into #Raspberrytalks arms and scratching him.

While this was going on #Raspberrytalk's Dad was watching it all happen. I could see this was really upsetting him and as soon as I could I went over to him and comforted him. I told him I know it's hard to see, but #Raspberry will be ok. I could see by the look in his eyes that he was scared for his son, frustrated at not being able to make everything better and wanted his son to be well again.
Luckily Rob didn't stay around for too long and he didn't get verbal, which would not have been good.

Fighting with Rob always takes it's toll on both me and #Raspberrytalk. As usually happens he ended up collapsing with exhaustion and having to sleep for rest of the evening, while me, #Raspberrytalk's Dad and Step Mum spent the time dealing with the emotional fallout that #Raspberrytalk's psychological, psychiatrict, neurological and physical events always leave in their wake.

I think there needs to be some sort of training made available for people that have to care for a loved one with these sort of issues, but there seem to be none that I can find that don't have hefty fees attached!
#Raspberrytalk's Dad did say to me that I was doing a brilliant job taking care of his son. Raspberrytalk also told me later that his Dad said I'm a very strong woman. I hope I can stay strong .....

Take care of each other
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

WHO? WHAT?

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

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

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

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

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

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

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

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

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

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

take care of each other
carers vent