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.
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.
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?
I
am in my late 30’s and my husband is in his early 40’s. I never thought I would
ever have to be someone’s carer, especially my husband’s.
I
started to have to care for my husband a few years ago. It started of with me
helping him up and down stairs every now and then, but as my husband’s health
got worse my care role became more. Now I have to help him in and out of
bed/chairs, help him wash in the shower, get dressed, etc. Because he’s
unstable on his feet I assist him while he uses a stick to walk. I have to help
him up when he falls, make sure he’s not hurt, etc, and reassure him when he’s
having panic attacks. I even have to restrain him when he’s trying to hurt
himself. When he’s having really bad shakes or suffering from muscle pain
and/or paralysis I have to help him eat/drink because he can’t hold his knife
and fork, cups, etc.
Due
to the extreme exhaustion and pain his ME and Fibro cause after even the
smallest amount of excursions, its also down to me to do all of the cooking,
cleaning, washing … even cutting the grass, etc.
There are several different reasons why my husband stumbles and falls, too many to mention here, but below you will see a list of my husband’s health problems/conditions.
Here’s a list of my husbands health problems/conditions:-
qCervical
Spondylosis (coupled with the above this also causes numbness in his arms
with painful tingling in extremities and muscle spasms)
qThoracic Spondylosis
qChronic pain in lower back,
the cause of which is still being investigated. This also causes muscle spasms
and extreme pain in right and left buttock and legs.
qOsteoarthritis in both knees
qOsteoarthritis and limited
mobility in left foot caused by his left foot being shattered in a motorcycle
accident in 1994.
qThe side of the foot was
also torn off (replaced with a large skin graft from his thigh), tendon and
major artery severed and the big toe partially severed.
The
above causes him constant severe pain and his knees often buckle causing him to
fall. He also has a neurological problem that makes his head think the floor is
the wall and causes him to fall backwards without warning.
He
also suffers from Anxiety, Depression, Agoraphobia and gets really bad panic
attacks, mood swings and weird attacks that leave him hyperventilating,
drenched in cold sweat, heart pounding, vision blurred, dizzy, disorientated
and unable to move (these are different from his panic attacks). His ME can
cause sudden onset of extreme fatigue and/or muscle paralysis which will cause
him to fall very suddenly.
My
husband recently saw a consultant Psychiatrist and he added to the list with a
diagnosis of:
qConversion disorder (non
epileptic) seizures
qPanic disorder
qMixed personality disorder
Everyday
tasks that most people my husband’s age take for granted, like getting dressed
or having a shower, are just a few of the things I have to do for him. Not only
do I have to help my husband with these kinds of tasks, I also have to be there
for him emotionally as he has mental health problems as well.
I
could give you more examples of what I have to do for my husband but I think
you all get the idea.
Being my husband’s carer has changed things
for us both and even with the strong relationship we have, caring for him has
had a strain on it. I know he resents the fact that he needs help and is
constantly frustrated and I sometimes wish he was back to his normal self
before he got ill. Since he became ill he has changed as a person and this is
the thing I find most difficult to deal with. I do get glimpses of the man I
fell in love with and that is one of the main reasons I stay.
We
still have a romantic relationship, but it is different. I can’t explain it,
but it’s just different. I don’t know if that’s how it is for my husband, but
that’s how it is for me.
Some
days it’s like living with a friend rather than a husband, especially when he
is having an extremely bad day. Sometimes I think maybe I should not be his
carer because I am so protective of him and so close to him. But on the other
hand, maybe I am the best person to take care of him because I know him
so well and I do and will notice changes in him. This is not to say that some
days I don’t just want to walk away and not come back. I think it’s quite
natural for anyone forced into this sort of situation to feel like that.
But it also felt almost natural
for me to become my husband’s carer. I’m told I have a caring nature to me
anyway, but I never thought I would end up being an actual carer. Being a carer
has affected me in so many ways; some good and some are bad.
It
has shown me that I am a strong person and I am capable of dealing with certain
situations, like when my husband is having a seizure. Sometimes when I read
through my blog, I almost forget it’s me and think “how does that poor woman
cope with all that going on?” and then realize it’s me!
But
on a more negative note, my husband’s health and the fact that I’m his carer
has taken its emotional toll on me. I have always suffered with depression and
seeing my husband’s health get worse and just having to process everything has
done my head in a bit.
I
don’t want any of you to read this and feel sorry for me. Yes, I had little
choice at first in becoming my husband’s carer, but I have chosen to
stay his carer.
So why did I want to share my story for Carer’s Week?
I want
people to know that a carer can be anyone of any age/background and becoming a
carer can happen to you suddenly, like it did for me. I also want people to
know that, yes, being a carer is hard and you may think you can’t or would
never be able to do it, but you can do it because like me you will find an
inner strength.
