What is housebound?

Aw bless you sweetheart! I'll have you know I rarely say sweetheart to anyone! 

I relate because of my son and the way he's sometimes been the parent and I've been the child.

They are my world! My light on otherwise dark days 😀😀😀😀

Me too! I stay alive for him, he's the best thing in my world and I can't leave him to I have to battle this illness.

One time when I was at the worst of this illness all I wanted to do was die. I tried to commit suicide because I couldn't bear it any more, I took pills. I suddenly realised I couldn't leave him so I got to his room and said phone an ambulance, quick!

He phoned them, and sat by me with the most empathic kind face and ways. I said 'Why should I stay alive, I'm no use to you?' And he said 'Because you like to do things!'

I'm so ashamed that I did that but the illness had taken me that far down. My son saved me!

Do not feel ashamed about yourexperiences as they can be a huge impact on how your life proceeds. May seem obvious to some. Illnesses can overwhelm you like a relentless darkness and a small gesture or word can provide a glimmer of light and hope. Your son gave you your hope back. Now you can share your experiences and be someone elses light and hope. i hope this comes across as i intended ☺️☺️☺️

Yes it does; it changed me. Me and my son are so much closer. He didn't believe I was ill, he didn't understand how hard I was trying to be his mum and failing. He does now and we love each other.

You're right in that the things we do that we're ashamed of can be teaching times.

Indeed Donna. How right you are. Georgia shares generously and I for one am grateful to her for it. I now know to honour her son, and who brought up the son to be of tender service to his mother, Georgia.

So dear Georgia good bye shame.  Who learns more in the schol of life? The perpetually healthy or the chronically sick. Surely it is the chronically sick.

I've never told anyone that before but here I am saying it in a public website in the hope that if anyone feels that way, any mother, father, brother, friend, we all have people who love us.

Please don't do what I tried to do! It gets better.

Yes Georgia, I for one and there will be many others including your son that are glad you are here with us and giving of yourself for our comfort as well as providing us with useful infomation. You have learnt something hugely valuable and are passing it on. I have no such experience but if I am wise I will learn from you. It does not pass me bye that without my frightening disease I should never have met you and so missed out on what you have been teaching me.

Wow George, I had to think about that for a minute. I suppose that teaching people what not to do can sometimes be as valuable as teaching them what to do.

Did you hear about the lovely young woman in her early twenties who had ME so severely that she could barely move at all? She ended up so thin and she kept asking her mum to help her to die.

In the end because she loved her so much and couldn't bear to see her suffering any more she did help her to die, imagine her grief?

She was put in prison.

Grief upon grief. The law is blind and pityless. Love can come at a terrible price. I take my hat off to a mother who loved her suffering child so much.

Yes she must have been through such terrible agonies and then to have to grieve in prison! I saw it in a youtube video and the young woman really did look like she wasn't going to get well. I'll always be haunted by that.

If It was my son like that I'd have no choice like that mother.

People can't tolerate their pets suffering and it's legal to help them to die, but not people.

Yes we can be kinder to pets than our loved ones. Why? Because so many could not be trusted to act out of love. So many would be greedy and grasp their inheritance early.

I suspect it is also pets love unconfitionally and we recognise that, the "pet" will trust us to be its friend partner and guardian and accepts us for who we are. and we tend to respect and return that.???  

and there is no risk that they desire our money and goods.

Which is why it would need to be properly debated and monitered. For instance end-of-life invasive techniques to force people to stay alive when they're naturally dying needs new policy.

And the dying person's wishes taken into account, when they can still communicate, they're often the last ones listened to!

My mum, my sister and me and my son's dad have had to take pets to the vet and we've all had to grieve and wait until we were sure it was the best thing. 

There's this thing with the medical profession of having to prove that they're such good life savers, and they've saved mine, they're good at it, but sometimes people should be let go a little more easily and gently like with our pets?

And they won't punch us when we're trying to kill them! Oops shut up mouth. 

I watched recently a dear  friend taking months to die of kidney cancer spread to many bones. None of her vital organs failed. She chose pallitive care supposing that meant pain control easing her into the grave. Instead she lived in partially controlled pain far longer than she or her family expected. When my friend asked the nurses and doctors what they were doing when they adjusted her pills they just answered in uninformative platitudes.

I now greatly fear such a protracted painful end. One can formally chose DNR Do Not Resusitate. It seems at 70+ to go through the process of dying once is plenty. But even DNR is not necessarily obeyed. To have ones final weeks drawn out despite very poor quality of life seems very cruel. So I agree we need new rules for the limiting of suffering as well as for the safety of doctors and nurses.

I think we need to trust the medical profession; in some respect's they're ace! But we should trust ourselves more and that may included more public debate on living longer verses quality of life near the end.

Hi Georgia. I do use medical services, GP and hospital clinics etc.. I also add a high quality diet to the equation. Surely excellent diet should boost health and support medical treatment. We need to take a lively interest in our health and make ourselves ready really to assess medical advice rather than just accept what is offered.

My doctors good in that he listens to me; mostly phone appointments because it's hard to get there. Previous doctors used to tell me what to do and when it wasn't right for me I said no, such as antidepressants for ME. I suggested I might have ME and a nurse and doctor said no it isn't because your blood test results are fine! 

My current doc gives me particular things like thiamine and pain meds because I've asked for them, referred me to a Homeopath, well basically we work it out together rather than him being in control. I went through quite a few doctors before I found him.

 

That was very wise of you, Georgia. Listening doctors are hard to find. All too often I have found that doctors have one mouth and no ears. My oncologist caries that deficiency to an art form. I am trying to change her for a listening model.

 It took me 3 different surgeries, and I sacked 4 doctors before I found him. I was in the chemist and a pharmacist who had Fibromalgia recommended him in glowing terms so I thought that's the one! 

It was 5 docs I sacked! And I've heard the same story from many ME sufferers in the CFS forum.

My advice to anyone is to keep looking until you're happy with one. You don't have to put up with inadequate treatment.

What a treasure that pharmasist is. I am inclinded to forget about the pharmasist in my haste to collect my presciption.

I also have thought very seriously of suicide, I HAVE TRIED TO QUITE LOGICALLY WORK OUT WHICH OF MY FAMILY WOULD BE BETTER OFF WITH OUT ME AND WHO WOULD SUFFER IF i SELFISHLY KILLED MYSELF. I DON'T BELIEVE IT IS POSSIBLE TO FAIL AT SUICIDE, IF YOU FAIL THEN YOU WERE NOT SERIOUS ABOUT ABOUT DOING IT. I BOW MY HEAD IN SHAME AND ADMIT I JUST DO NOT HAVE THE COURAGE ENOUGH TO DO IT,I AM A COWARD.

Hi Rita, personally i would say it is because part of you has the courage ot go on. Being here you help others and that alone is a very positive thing, you already contribute with a great bunch of people. I would say carry on be a contributer at least you have the courage to talk with us so keep on doing so. one of us one day will know hte answer till then keep trying, you may be that person one day...one night it was drinking a cup of coffeethat saved me, i suddenly realised i would miss that (it was a good brand mind you) so, carry on with your courage now and help us all find our paths and a way to being better.

Hi Andrew, thanks for your reply. Hey I am not alone despite having family which is how i feel a lot of the time because I do feel as though I have any purpose in my family. I was a burden to my husband who passed last year for 19 years because I could not cope after my 19 yr old son was killed. After that I became a useless parent to my other children but I cannot bear of leaving my grandson with the legacy of having a Nan who committed suicide. I love your coffee tale, lol. Everyone wants a cure for their illness but I think M.E. is a particularly cruel illness in that it steals your life without any outward signs so I never tell  people I have it because when i was diagnosed 20yrs ago it was in the middle of the great debate about it all being in the head and the majority of the medical profession denied it's excistence at all. Speaking out on hear after 20yrs is the first time i have uttered (or rather written) the words 'I HAVE M.E. !

Dear Rita, I'm sorry you've had this miserable condition for 20 years. I had it for 10 years before I gradually improved. Looking back on my experience I feel that at least 10 years of my life was stolen by ME. I hardly remember anything about period, the period when my young sons grow up into their teens. The fact that the disease is invisible to other people is a very great extra burden. I have the furious advantage of being diagnosed for sarcoidosis and so my ailment and treatment were attributed to that. The treatment however was a disaster and exacerbated my condition hugely. I hope that even know you will achieve a recovery at least in part .

About no outward signs Rita. I have a grumpy neighbour, long story, basically we fell out because he wanted me to have my sycamore tree cut down because he was afraid the roots would grow underneath his oil tank that powers his house.

Incidently the fumes from his oil tank give me headaches and nausia so I can't go in that side of my garden. We had a long battle and he hates me because I said no, the tree stays! I compromised and my housing association had the tree trimmed so the roots wouldn't grow so fast.

It's hard for me to go out at the best of time because of being so ill but sometimes on better days I go to the shop with my trusty stick. I was carrying shopping home one day and he was there. He said in such a sarcastic voice 'Oh, I see you can carry shopping then!' 

Now it's even harder to go out in case I bump into him.