Terminal and Scared

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kman

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Knowing others Won't learn from my mistakes, Being TERMINALLY ILL !
Are you sitting comfortably (explanation if needed, later),

Good then I will begin,

I want to take you on a journey, to tell you what the reality of PAIN is, not a sore foot, not a migraine, not even the worst toothache you ever had, I want you to know punishment ( No not from God, but from my own body, this is the Truth of what you may suffer If you don't avoid the mistakes I made ),

Tonight is a bad one, and I really honestly don't expect to get any sleep at all,

I have many types and strengths or magnitudes of pain, not all of it due to diabetes, I'll try to guide you through what I go through with a hope that I'll scare you witless,

And be scared, be very scared, because even though I can get nowhere near describing the intensity to you, I aim to make you cry, because you need to be scared, you need to be so scared that you'll never ever neglect you Diabetes again,

You know in hospital when they ask you to score your pain, from 1 to 10,

Well tonight, my Pain is fairly typical, even fairly moderate compared to some nights, nightgown being the worst,

Like I said I have different, and varied pains in various parts of my body,

Tonight, the pain in my feet ( Both ), I'd rate at 13, Yes Thirteen, and you know in a restaurant where they pick out a Live Lobster, throw it into boiling water and cook it until there colour changes to a deep red colour,now imagine your feet are lobster, have been thrown into boiling water and cooked alive, until they are deep red, now visualise the pain, this is only 13. Out of 10,

That alone has me screaming for mercy, and that's just one of the pains tonight,

From my ankles up the entirety of the lower legs, the pain is terrible, imagine some one has exposed every single nerve iand vein n your lower legs, and then, just to make it really painful, they have poured acid, or even molten lava, down them, and then put them back in your legs, of course your skin is also screaming in pain, tonight your legs rate 17, Not the worst this week, a little earlier at it's peak, I was again crying like a baby, Sat with Wendie, laying my head in her arms, and begging her, PLEASE have me put down, anything is better than this, please Wendie don't ask me to fight, I can't fight,

BELIEVE Me I'm not being selfish, but I really can't cope, I don't really mean put me down, and she knows it, but this pain is killing us both, and she's sobbing with me, but still, the pain drones on, and Wendie went to bed long ago, I'm alone with the dog, trying to place my legs in a position that gives a little relief or comfort, It doesn't come,

My left knee is riddled with joint pain from the arthritis, and both hips feel like they are in a vice that's being tightened, this alone is at least a 9, and I can't stand without help,

My hands are also in a tremendous amount of pain, especially the right hand, yes remember I'm right handed,, they are stiff with arthritis, I can barely move most fingers, the right hand had been damaged when I became ill in March,I had a 4 inch abscess in the palm, 3 operations, skin graft, plastic surgery, damage to muscle, nerves and tendons, 5 and a 1/2 months of physio on the hand, and special excercises 4 times a day, every day, for the rest of my life ( LOL ), I only have 1/3 the strength I have in my left hand, and I can't reach to wipemy own bottom, added to this, I have, neuropathic pain and loss of feeling and sensation in the hands, holding a pen or a knife and fork is painful, and almost unbearable after a couple of minutes,

Most of the time, I can only use one finger to type,and it is always painful to do it, I make lots of typos, and I hate predictive typing on touch screens, so often things come out very wrong, or I lose all my work,

Pain levels tonight are about 8 in the left-hand,and around 14 or 15 in the right hand,

I used to Cross Stitch,yes I'm a man, I can't now pick up a needle, never mind thread it with silks, and remember I am on insulin,

We sometimes babysit for a neighbour, but I can no longer pick up 1 year old Lilly whom I love to bits,

I Have toothache too, which is unlucky as I only have 1 tooth and that is horizontal, with the gum given over it, I lost all my other teeth a few years ago, they were badly infected, and causing Endo Carditus an infection around the heart that threatened to kill me quite quickly, I really miss eating Cashew Nuts, Crispy Baguettes and other hard stuff,

Tonight I could quite easily ended it all, but a little while longer with Wendie and our Son, is worth bearing the pain, but if only I could turn back the clock, I CAN'T, and I AM DYING, no chance of saving me, but YOU, well your that's different, you don't have to DIE, at least not for a very long time,

IT'S 1.15 am and this has taken me over an hour and twenty minutes to type, please, don't ignore it, don't think it won't be you, stay well, look after yourself,

And PLEASE PLEASE don't you DIE in the excruciating agony my family are suffering !!!
 
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cott97

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329
Type of diabetes
Type 2
Kevin
It always surprises me how much pain the human body can take and still carry on. I hope that you eventually found some sleep. Today is for me the start of monitoring myself - I have had a few weeks of stress where I let things go and gradually reading your posts I have started grabbing the reins again and taking control. It has also made me realise that no matter how bad I think my situation is that it can get worse and its up to me to ensure things move in the right direction.
I wish I could offer advise that would ease your pain but I have none to give. Having spent time waiting to see if my husband would survive an illness I have some idea of what Wendie is going through. She will find the strength to support you through her love as you would do if the situations were reversed. She will gain strength through your fight to fight for you when you need her help to continue. I hope you both have good friends close by to provide support and to help with the little things.
You are both an inspiration and I am glad you found this forum
Cath

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WhitbyJet

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Oh my, Kevin,what an accurate description of neuropathy, I remember it well, the burning as if feet are on fire, the shooting pains, the feeling as of I am wearing socks 3 sizes too small, my toes somehow wanting to push their way through those non existent socks, what a nightmare.
What is your hb1ac now Kevin, I know that with tight bg control its possible to stabilise neuropathy, even reverse it to a certain extent.
Your posts are certainly are serving as a reminder of what can happen to us if we dont take this darn disease serious, I hope that you can try to help yourself as well, dont give up Kevin, you never know what you might be able to achieve.

I hope you have a better night tonight, you must be exhausted.

Big hugs x
 

kman

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711
Type of diabetes
Type 1
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Knowing others Won't learn from my mistakes, Being TERMINALLY ILL !
Whitbyjet,

I'm so so sorry that you understand from experience, the pains of various neuropathies, , I also have sensations that I described as being like Ants biting the bones inside my toes hundreds of them, often all over my feet, when the pains really bad, It's lions or sharks, the worst night it was T-Rex''s ,

Tonight's pains are at a more manageable level, and I did get a little sleep last night, today I've been so very tired,but at least I can hope for sleep tonight,

Wendie my wife is my rock, She's always there forme,and I hope that I too am there for her, She's amazing, certainly my hero,

But I do worry about her, She's T1, and also has many issues, and health problems, she is COPING now,and she has come to terms with things, but I'm worried about after I go,

We are about to movie into an Adapted Property, she will lose this when I die,and she will need to get a job,she quit work to be my full time carer in March,

My hb1ac latest was a rather poor 6.4 I was so disappointed, I had hoped for a bit lower,

folks PLEASE keep Wendie and our Son in your prayers, and I will keep you in mine,

Goodnight, Keep Well, Stay Safe,
 

punto53

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Messages
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Oh my word kman ive just read your story tears are still streaming I'm so upset by your suffering and what you and your family are going through!
Please don't give up as we all feel much worse when we are exhausted from no sleep..
Lots of hugs
 

carraway

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977
Type of diabetes
Prefer not to say
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Other
Hi Kevin

I am so sorry to read this. i can only hope your good times outnumber the bad times.

Like WhitbyJet I also got relief from my neuropathy by reducing my blood sugar and drastically reducing my carbs.
I wonder if this might give you some small amount of pain relief?

I don't know what you had tried before you found yourself posting here? If we met you five years ago or ten I wonder what you would have been writing?
If you'd met me 5 years ago. I would have said 'diabetes? Yes, nothing to worry about. It doesn't mean anything to me. I'm fine'

I only changed this summer but I still think like that sometimes. I shall try to improve because of what you wrote

Cara


Cara
 

mon

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Hi Kevin I'm so sorry to read about your situation. What you've said has really shocked and scared me to be honest. Your hba1c is 6.4 you said which I would have thought was really quite good, mine is much higher. You say you abused your body and not to make the same mistakes as you but can you explain what you mean by this so I understand? Thanks so much


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kman

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Knowing others Won't learn from my mistakes, Being TERMINALLY ILL !
Sorry folks Will try to post tomorrow, well later today,, very tired and feeling rough,
 

WhitbyJet

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kman said:
Sorry folks Will try to post tomorrow, well later today,, very tired and feeling rough,
Nightly night Kevin. Hope you can rest. You are in my thoughts. Love to you and yours x
 

kman

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Knowing others Won't learn from my mistakes, Being TERMINALLY ILL !
Thanks Whitbyjet , Awoke this morning almost refreshed, and certainly fighting fit,
 

woofnwooly

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Hi Kevin,
It's a difficult thing facing a terminal illness and being in dreadful pain. I too suffer dreadful chronic pain but for a different reason and we all know that our feelings about ourselves our future and family, become badly distorted when you have unrelenting pain. You don't mention what help you are receiving, but I hope your Gp is treating you with high dose pain killers including patches and injections and that you are being helped by Macmillan nurses who will be able to help and advise you a lot on your care and management. I think many of us do treat our diabetes with very little respect and many are ignorant of the true horrors that can and do happen, so maybe some will think a bit more about their illness thanks to you. If I sound a bit knowledgeable it's because I'm a nurse BUT, It doesn't stop me from recognising someone who is hurting and needs help and support, in fact it drives me to right things like this. Yours in suffering but trying to overcome it. Keith
 

kman

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Knowing others Won't learn from my mistakes, Being TERMINALLY ILL !
Keith,

I Retired from work almost 14 years ago, but until earlier this year we coped well, I then spent the aforementioned month in Leicesters Royal Infirmary, having had a terrible time, and the Worst of prognosis, the reason I say this is that I was before retiring aN RMN (Psychiatric Nurse),

In answer to your questions YES I am receiving the best of treatment and support, I am on higher dose Bu-trans (Morphine) plus I'm on Pregabalin, Carbamazipine, and Duloxetine which was originally just for PAIN, but is now for depression too as I can't have other antidepressants due to reactions with my other meds and conditions, I'm also doing a Program with Medical Psychology to help live with and though the pains, I have other medication options that I have declined so far, and want to wait until. !!!!!!

Yes Kieth, I am hurting, and not just the physical pain, I don't want to Die, I don't want pain, truth is I don't feel strong enough to fight, BUT Most of all I really DON'T want to leave my lovely family, that's the hardest bit of all, and every day I cry at the thought that soon we will be parted, and nothing takes that sadness away,nothing makes that feel better, .

I am going to Die, very very soon, And I can't stop it,BUT if I Can stop just 1 of you out there dying in such terrible pain and tragedy then I have Lived for a reason, a purpose, and have left my mark on the world. ... Right ?
 

lakelandgrey

Newbie
Messages
3
Thank you for making me think and taking my condition more seriously than I do. I feel embarrassed offering advice because it seems so trite compared to what you are going through but I do find reading books on the Buddhist way of looking at life a great comfort.
 

kazC

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Messages
64
Type of diabetes
Type 1
Treatment type
Pump
Hi Kevin

I'm so sorry to hear how tough things are for you. Thankyou for sharing your story and, in the midst of an awful time, still thinking of others. That is the mark of a strong man, and totally opposite to someone weak.

I hope there is someone who will listen when you need to cry, and rant. From my own experience, after a diagnosis severe retinopathy, it's the loneliness & fear that comes with the unknown and the future that was so unbearable.

Take care.

Karen
 

kman

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Knowing others Won't learn from my mistakes, Being TERMINALLY ILL !
Thanks Kaz, have sent you a PM,
 

blothom

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Hi Kevin,

I have only just read your post, as I have been trying to cope with my own demons recently. I feel as though you are a kindred spirit, as I am enduring multiple conditions at present, mostly caused by diabetes, and my lack of control for 14 years. I had tried to lower my bgs occasionally, but whenever I did, I found I was experiencing such pain, and feeling so ill, I soon reverted to the high sugar intake of sweets, cakes, and gooey desserts that my body craved. I felt fantastic when my sugar levels were high, so how could it be damaging me?

This year I found out for the first time, just what I had done to myself, with the amputation of my left big toe. I was put onto insulin, and have brought my HbA1c down from 135 to 48. Everyone has said I am doing brilliantly well. My GP and DSN are pleased with me, and are very supportive. My stump healed well, and I was looking forward to going back to work. However, as the bgs came down, the pain went up, to the point that pregabalin, duloxetine and strong pain killers wouldn't work, and like you, I wasn't sleeping. My GP then prescribed Butrans, low dose to start, 5, and that helped. My pain was muffled but the sensations were still there, so I know the problem is still with me. I managed 6 weeks back at work, when the toe next to the amputated one started to turn purple. I immediately panicked, and went to my podiatrist, who asked my GP to refer me to vascular again. Within a week, I was back in hospital, and being told they couldn't amputate my toe, as I had a heart attack recently - I never even knew! After they had inserted a stent to sort out the heart problem, I had to stay in hospital for 3 weeks, while they flooded the toe with antibiotics in an attempt to save it. During this time my eyes were playing up, very blurry, but only on occasions, and I started passing blood in my urine. So now I have urology running around taking scans of my kidneys and urinary tract. Rheumatology also got involved because some of the pain symptoms I was experiencing could be fibromyalgia, which my sister has. But now they say it could be vasculitis!

The toe has shown improvement, and everyone was cheering as it turned back to normal size, nicely pink, with the smallest ulcer, shrinking daily. So cleared back to work by my consultant, and the podiatrist, I have worked for one week (just ONE!!) and my toe is back to purple and oozing with pus, with every likelihood of sepsis, despite the constant antibiotics! I have so many appointments at clinics, with no one telling me what is happening, what they have found, or even what they are looking for, that I feel as though I am dying and no one has the courage to tell me. It is the fear of not knowing that is the worst. If I am likely to lose my toes, one by one, I would prefer they take the bull by the horns, and amputate from the knee down, so that I can get on with things, instead of coming in and out of hospital. Don't get me wrong, I don't want to die, well not yet, anyway, but I can't stand this uncertainty. I am so sorry this has been so long, but I feel you will understand, and it helps to get it out of my system.

Kevin, I wish I could do something to bring you peace, and no pain, but I can't. All I can do is tell you that, although like you, I probably learned too late, I am fighting it all the way, and am doing everything I can to improve my chances. You are so right in what you say, DIABETES IS A KILLER, and there is not enough knowledge passed on to make us realise how important it is to look after yourself. Your story has made me realise that I DO want to live, and I promise you that I will continue to fight, and pass on the word, in your name, so that others can understand. I hope I am not too late in coming to terms with this disease, and that I have time ahead of me to do some good.

ANDY, I will not go gently into that good night!

KEVIN, THANK YOU FOR YOUR BRAVE REVELATIONS. I WISH YOU AND YOUR WONDERFULLY SUPPORTIVE FAMILY ALL THE BEST IN THE STRUGGLE AHEAD, AND THE PRAYERS THAT WILL HOPEFULLY WARM AND RAISE YOUR SPIRITS. With empathy, and love, Pat Wilton.xxx
 
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kman

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Knowing others Won't learn from my mistakes, Being TERMINALLY ILL !
Pat I will get back to you by PM or a post here,very busy day today, But yes KINDRED SPIRITS is right. !
 

WhitbyJet

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Kevin, Pat - thank you for your honest, open posts, you are in my thoughts x x

I have printed this thread, shown it to a struggling diabetic, she read it with tears streaming down her face, she wont be worrying about Christmas food anymore.
We will get our heads together this weekend to work out a Christmas spread that wont spike bg levels, including an orange cake with a chocolate ganache no less.
 

kman

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Knowing others Won't learn from my mistakes, Being TERMINALLY ILL !
Thanks Whitbyjet. I have been so open and honest so that people here can see the realities,but can also since my sincerity , this is why I am so glad it touched your friend, and helped them to make personal decision about how to lead their life, and the choice of food they eat etc.

I hope they didn't cry too much, and as for the Orange Cake ... Don't forget me. ... That sounds Real Good LOL !
 
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