Telling the truth

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I don’t remember when it happened, it wasn’t like there was this sudden revelation or I even made a true decision about it, I just know that it happened. Some might say that I gave up, others that I saw the truth, I’m only sure of one thing, it’s not the first and I can’t prove the second. I’ve been ill for over 30 years now, most of it unaware of what was wrong with me, just with this knowledge that there was something wrong, something seriously wrong, but no one else agreed with me. I was left to just get on with life, to make the best of the way my body was and to do what I could, to make my life the best I could. Personally, I don’t think that I made too bad a job of it. When things were bad, I even found the money to go to the homeopathy hospital, but after 5 visits, nothing had changed and the money I had saved up, was running thin. I had a simple choice, get on with living or starve. Eventually, when I did get my diagnosis, I had the most amazing collection of reactions to it. I knew that I had just been handed a death sentence, but on one level, I was overjoyed because I had been right all along. What I didn’t expect was that there was no cure, no operation, nothing that any doctor could do for me, other than palliative care. I had for all those years believed that the day they could tell me what was wrong with me, would be the day they would start to cure me. When they couldn’t, I searched everywhere that I could for an answer, for even the slightest clue that there might be an answer one day, all I had to do was hang on.

I’ve been hanging on now for 15 years and not a single advance that has been heralded as the miracle cure will ever be of the slightest use to me. In fact, I no longer even read the write ups with any hope, I only read, so that when all those wonderful caring people out there, send it to me for the hundredth time, I can comment on why it won’t help me. As I said, I don’t know when it happened, or if there was a decision involved in any way, but I no longer even look for a cure or even anything that might improve how I am. More than that, I no longer even have any hope that the medical world will be able to help me, any more than they do today. I expect that I’m not alone in reaching this point, I suspect that there are many out there silently living exactly where I am. We feel we have to be silent, as we believe that our loved ones and those who don’t know us wouldn’t understand, that they might see how we feel as us giving up, but it isn’t. I haven’t given up on anything, other than false hope.

Hope is a wonderful thing as it gets us through some of the worst times in our lives, but it’s only useful when there is something to base it on and something we can believe in. I don’t remember when I stopped looking for what wasn’t there, all I know is that it was before I became housebound. Somewhere inside me, deep inside me, I woke up to a truth that had been staring me in the face from day one, reality. The reality of being given a diagnosis of both a rare and incurable condition, that the fact is, the likely hood of anyone coming up with a cure is slim, very, very slim. In the case of MS, nearly all the research and therefore all the breakthroughs are in RRMS, the one that the majority of people have. The rest of us, well we are the forgotten, the ones who if it works for RRMS, they will try it on, just in case it might help, but normally, it doesn’t. Right back when I was diagnosed, they said there was no point putting me on any of the MS drugs, as not one of them would help me. It took a long time for that reality to reach my brain and when it did, I felt I couldn’t talk about it.

How do you tell those who love you, that your no longer going to even bother reading any of those sites who claim they might be able to help. That you don’t even want to hear about drugs they have just discovered that have helped some others in tests. In fact, you quite simply want to scream, when you hear it on the TV because you know without hearing anymore, that the truth they aren’t saying, is it won’t help me. Once any condition has been in your body for 30 years, once it has taken you to the point where you are housebound, in a wheelchair and have lost control of most of your insides, there isn’t time. Any drug has to go through years of testing and development before, it would even reach the likes of me, and I don’t have all those years to wait. That’s the reality that too many of us live with in silence, because if we were to say it, whoever heard it, wouldn’t hear our truth, they would hear “They’ve given up”. Well, I haven’t, just read my blog and you will know I haven’t. Giving up is something totally different. This is about living without false hope, about living with the truth and being at peace with it.

It took my many years, right up until the last couple, for me to feel that I could talk freely with Adam about all of this, without him taking it wrongly. I used the news of some “breakthrough” that was announced on the News as my root into the conversation and because he could see both my anger and my feelings clearly, he also saw that I was still fighting but with real life, not some dream that might never come near me. I get angry every time some announcement is heralded as the possible cure for any condition, it makes me angry because, without a doubt, it will build false hope in so many. To me, that is cruelty, especially, if it were to be heard by a child of someone who is dying, they wouldn’t understand it at all.

Trust me, if my doctor phoned me today to tell me that there was a new drug he wanted me to try, I would, but I’m not holding my breath. I’d rather enjoy the life I have, for as along as my body will let me. Free of worry, free of searching and free of all false hope.

 

Please read my blog from 2 years ago today – 16/08/2014 – Video’s, tricks and talk

Well, that is it done! Yesterday went rather as I expected, it took far longer than they said it would, that was one thing I was prepared for, I had it worked out in my head as taking about two hours and Sophie was here for two and a half. What didn’t go to plan was that her video camera died after 20 minutes, the other hour and half was recorded along with lots of note taking. Although it was all for this new…..

25 thoughts on “Telling the truth”

  1. I know how difficult it is to avoid having false hope – working with adolescents in in-patient mental health units for 25 years however taught me that there comes a time when in order to help someone you have to face reality and the pain that brings. Sometimes that pain was that a parent was never going to turn into the loving, caring parent that the young adult wished they could have had, sometimes it was that a serious illness was not going to go away.

    Sadly, I know that any breakthrough of the type that people see and think might help you is probably at least a generation away. There may be answers for others but I can only salute your bravery in admitting this. I send you hugs and my warmest wishes that you get the very best of care for the rest of your life.

    Dave

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    • Thank you Dave, I believe that it is actually a really healthy thing to come to terms with, but as I said, it’s one that others find hard to handle. There is an odd freedom in just accepting this is the way things are, to be able to just live it and enjoy what you have. I hoped that by writing this, that others out there would lose the guilt and talk about it. I can only hope they find their freedom too. Our lives are too short to live with such secrets pulling us down. (((Hugs)))

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  3. I don’t know you and I doubt we’ve ever spoken, but I wanted to send you a virtual hug today. I don’t know what it’s like to be you, but I know what its like to be lost, confused, and pissed off with the medical care systems of the world. I can really relate to the beginning part of your post, as I have been fighting some mystery illness and multiple food allergies for about 4 years now. The doctors love to say there is nothing wrong, but there are days that I cannot even walk. Adjusting your life to accommodate such things is difficult. Listening to people who care but don’t understand can be trying for your patience at the best of times. I’m not here to give you any advice or even to ask you to feel sorry for what I am going through. I just wanted to pop in and let you know that people care, you are not alone, and “giving up” the fighting doesn’t mean giving up – sometimes it just means giving up on the stress so you can embrace what you have.

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    • You clearly understand where I am, and what I am saying. I often think that you either have to be chronically ill, or living with someone who is to empathise with any of our lives.

      I know just how hard it is to live as you are right now. I have to admit that I felt like really giving up many times as I struggled to just make it through a day, but I got there and one day, you will too. Being believed is a hundred times more important than any name they give to what is wrong with us. Hearing those words is something you should never give up on (((Hugs)))

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    • I think you have totally miss read this post. I am not struggling, not lonely and not feeling alone. I am actually a little lost as to how you even got that feeling from my words.

      I was writing for those who have gained the same knowledge that they will die, before there is a cure for what is wrong with them. Knowing that, accepting that and being set free by the knowledge is amazing. The problem is those around us, to many, including I think you, don’t understand, they see it as giving up. It’s not, all we have given up on is false hope. Once they do understand though, life changes, it gets better and we are free just to live, not to search for what will never be there to find.

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      • I am so sorry, I didn’t mean to hurt you, nor was I assuming anything. I truly just wanted to help somehow. Thank you for clarifying your post, I think I understand it better now. Again, I’m sorry, I didn’t mean anything hurtful to anybody. XOXO.

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  6. False hope, I think, is the cruelest punishment there is. Coming to terms is the bravest. And you’re right to be angry. Having to repeat yourself constantly to others who don’t or won’t understand is exhausting. You know what your body is saying. You don’t have to prove yourself. You don’t have to do anything but what you’re doing. Taking care of you and finding peace. After all life has thrown at you, you deserve to find peace at last. I’m thankful you’re still here to talk to and learn from.
    ((((((((Hugs))))))))
    😇🌻

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  7. Hi Pam,It was interesting to read your words,I understand where you are coming from.I think the word we are looking for is acceptance.Of the situation,of what it requires to live as much as possible with what ever ails us.Acceptance is not giving up but being realistic.The thing for me is trying to convince people that I’m not depressed and don’t need cheering up.What I would like is for others to talk about things as they are and not about what they want them to be,and not avoid what actually is.Thankyou for showing me that I am not alone and you comprehend where I currently am.Onwards and upwards,I’ll see you at the top.Sending love to you Nx

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    • I know all about the trying to convince people that you’re not depressed. The second we say anything that doesn’t sound like pink candyfloss, they always assume we’re depressed. As I said, facing reality isn’t giving up, nor is it depression, it’s just about accepting the facts as they are and moving on.

      You are far from alone and I’m sure there are many more of us out there, silent because they know the reaction saying so, will bring. It shouldn’t be this hard just to live, but that what other do to us, not what we or our health, does to us, and they can’t see it. At least we can be honest with each other, that’s the glory of the internet, we’re never alone. (((Hugs)))

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  8. Hi Pamela,
    I read your daily blogs everyday, because you inspire me to carry on, to hold on to hope, to grow strength and determination to not let a chronic illness defeat me, but you also teach me how to cope, how to get through each day, I don’t think you are even aware of just how helpful your blogs are to someone like me who faces a daily battle with an invisible illness, I want to express my thanks and admiration of you, you really are an amazing individual God bless you xx

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  9. I struggle with this concept of hope also – it can be so hurtful. There is a difference between the false of hope of believing a cure is coming and the hope that there is purpose in all this. I like to hold on to the latter. Maybe it’s delusional, but look how many hearts you touch regularly with your writing.

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    • It’s not delusional at all. In fact, in on of replies I wrote to a comment to my last post, we have to believe in or have a purpose. None of us would survive without one. You’ll also see in that reply, that I said I see writing as very much part of my purpose. So much of my life circles around it.

      Purpose is essential, it drives us to continue in more than just living another day, it makes us want to live every single one we can. (((Hugs)))

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  10. This post reminds me of my post about “Forgiveness”. It is a great weight that has been lifted, you can breathe easier and freer. It is not giving up. No never. It is seeing the world through new eyes and living your life. We are freer than those that hid away from the point of living for the moment. You made me smile for you. And yes I am sending hugs. Breathe deep. You earned it.

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  11. You are right, and you articulated this very well. It’s better to live with the ugly truth than a pretty delusion. It’s not that we give up hope, we just put it in the right place and base our hope on reality. This is the only way to truly make peace with our circumstances.

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  13. I have Menieres which causes vertigo attacks that have me on the drug without warning for hours. Family keeps sending me this stuff, videos of exercises, herbs, special “miracle” beverages, and I just look at them. Because these are all for vertigo caused of other diseases. Not mine. Honestly if they spent half as much time they spent looking for vertigo treatments on learning about my disease that causes the vertigo I would feel so much better (not physically but emotionally) I would feel understood. But they don’t. They look up magic cures for vertigo and tennitius and hearing loss but can’t be bothered to remember the name of the disease I have that’s causing all this.

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    • I can totally relate, I have a rare form of MS, but my family have never once been able to grasp that what works for other forms, won’t work for me. How hard is it for them to just remember the name of what is wrong with us? As I said in my post, I no longer even look. Sometimes, we have to be blunt with people, tell then what they don’t want to hear, just to get our point across. (((Hugs))))

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