LIVING WITH A TERMINAL ILLNESS

LIVING WITH A TERMINAL ILLNESS

Getting used to being in a Wheelchair with Richard by my side
Getting used to being in a Wheelchair with Richard by my side

LIVING WITH A TERMINAL ILLNESS

DIAGNOSIS; TERMINAL

Everyone has a relative or knows of someone who is walking around with a illness or disease that the medical profession has not as yet found a cure for. We walk around looking sometimes a lot better than we are feeling. We don't want people saying "you don't look well" so we put on the makeup and put on our best dress, men excluded of course, and we try to look like we are well and not sick.

How many of us have listened to these words : I am sorry, THERE IS NO HOPE, OR THERE IS NO CURE FOR YOUR ILLNESS . None of us are ever prepared for these words. We are hoping that it will be more positive than that. However, a lot of the time it isn't. We go away from the Doctor's Office wondering what lies ahead and asking ourselves "how am I going to cope with this"?. We try to start thinking positive about how things will go, trying not to let in those little negative thoughts that somehow just seem to come into our minds, things like "how am I going to get through this?, or even worse things with regard to thoughts of "dying".

FIRST REACTIONS;

I think everyone reacts differently when they are told that there is nothing more to be done. For example, it usually follows after you have had all the treatments that you can that are available for you for the treatment of your illness. The last thing we want to hear are those words, so we try very hard to beat the terrible affliction that is ravaging our bodies. Although, not everyone's situation is the same. You can be told from the very start that you are very sick, but there is treatment like chemotherapy, or radiation treatment, which may or may not be successful in your case. Some people have chemo, and go into remission for a few years. Only, to have their disease return at a later stage and start to fight it all over again. Sometimes, they make a full recovery, and then tragically, there are those who are not so lucky. Then there are those people who like myself, get told from the start, " Sorry there is no cure for this disease. However, we can give you medications for the various symptoms that you are suffering from to make it a bit more bearable for you, but in time these will not be as effective as they are now. However, you take them because any relief from your symptoms is better than no relief at all.

When I was told that I had Multiple System Atrophy, my first reaction was the relief that all these changes that had been taking place in my body for some time now, had been caused by some disease, and it was not all in my head. Then when I had digested that bit of information, I suddenly thought, I am very sick, the shock of this thought sent all sorts of things going through my head along with the feelings of denial that his diagnosis was wrong. Even after I had read the material my specialist gave me to peruse, I still wanted to believe with all my heart that he must be wrong. I didn't want to leave my husband, Richard. We had made all these plans together. Our wedding vows said that "till death do us part". But it didn't mean so soon after we were married. But there it was, there was no cure and the prognosis was poor.

COMMUNITY SERVICES

Where would most of us be without the help of these wonderful men and women, who give their time to come into your home and help you each day. I have help every morning with my showering and dressing. My carers are wonderful people and will do anything for you. The hardest thing I found was watching someone else clean my house, do my washing and ironing and even get my meals. These were the things that I use to do and now I can't . Because I can't drive myself to my appointments anymore, I have to use the services again and again, because there are so many specialist appointments to go to. I rely on my carers for just about everything these day. I think also one of my hardest obstacles to get around was having to go out in a wheelchair. I walk around my house with my wheelie walker, who I call "Dolly" I gave it a name, because I could only accept it when it had an identity and therefore it had to have a name. The wheelchair is called "Goldie", it was harder to come to terms with that, as I had tried to put it off for the longest time, until I had to accept that I just couldn't go anywhere without it.

DEALING WITH CHRONIC PAIN

Unfortunately, when you are given these sort of illnesses to live with, you also have the terrible afflication of chronic pain, which at times can be very debilitating. It can be in degress of intensity and sometimes it is controlled very well by medication, but there are times, when nothing seems to work. I have had so much pain relief over the years, that now I have a very low tolerance for the the pain medication that is available out there. I know all too well what it is like to be be in pain for many hours without any letup until you are at the point where you want to scream, so I decided to look for something, anything that would give me just a little bit of a distraction from my pain. Watching old movies on foxtel was starting to get a bit boring. Then I discovered games and doing surveys was a way of letting me concentrate on something else. I found that really works, although there are the times when no matter what you do, it is still there, nagging away at you.

However, I continue to soldier on day after day and some days it is easier than other days, but I am not a quitter. You never know, maybe one day some brilliant Doctor will come up with a way to put a halt to this disease before it gets to the point of no return. I know it is too late for me I hope that one day someone will find a cure and stop this terrible affliction from hurting too many more people in the world today. Lets hope so anyway. Afterall, years ago they didn't have a cure for a lot of the illnesses that they can cure today that couldn't be cured only a few years ago. So, I like a lot of other people out there who are fighting their own battles with a terminal illness, live in hope that ;

THERE WILL BE A CURE ONE DAY FOR THEM ALSO.

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Comments 6 comments

Peggy W profile image

Peggy W 6 years ago from Houston, Texas

All I can say is that I hope that you are having a good day today. It sounds as though you are surrounded by people who truly care for you in more ways than one. Thank you for sharing this reality with us on hubpages. We all need to learn to appreciate each and every day as it comes and treasure the small moments of life especially with those we love.


BEAUTYBABE profile image

BEAUTYBABE 6 years ago from QUEENSLAND AUSTRALIA. Author

You have been busy on my sites. Thankyou for all your lovely kind words. I do try to make the most of every day and I do everything I can to make each and every moment count. I will be reading yours next, so expect to see me again soon, okay. BB


NaomiR profile image

NaomiR 6 years ago from New York

Good for you for staying positive and not giving up. You're an inspiration to the rest of us and remind us to enjoy every day.


Army Infantry Mom profile image

Army Infantry Mom 6 years ago

What a hard blow that is, to find out your sick and no one knows how to fix you. I was diagnosed almost 2 years ago with a rare neru spine disease,(no cure available)..I have menigital tummors that has grown up and down my spine and they cut off my nerves from working right. They also grow into major organs as well. It is not nessisarly terminal as your disease is,.. it just has 90% suicide rate because of the pain and side effects. I like your attitude and your will to go on everyday, it is inspiring, especially for us whos ready to call it a life. Thanks for sharing, I just wish we would of "met" under different circumstances.


Niteriter profile image

Niteriter 6 years ago from Canada

I'm sorry that you're suffering. Living with unending physical pain requires tremendous courage and an unwavering faith in an Entity that is greater than yourself. Perhaps the knowledge that there are thousands of people around the world who are inspired by you will be enough to carry you through the really bad days. Best wishes.


beautybabe 6 years ago

Thank you so much Niteriter.

Yes, I hope people do enjoy this hub, and are inspired by it.

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