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Hi Guys

S

Steve770077

Newbie
Messages
1
Type of diabetes
Type 1
Treatment type
Insulin
Hi folks, I've just joined the group. I've been type 1 for four years, M aged 45. My big question is how the heck does everyone else cope with plummeting down a spiral of ever-decreasing health and not being able to pay the bills? I'm self-employed, live alone, and I get sick for weeks if I just catch a cold / virus (last month I was in Hospital for a few days to get my Ketones back down but in agony for weeks.) Catching a cold for me literally costs me at least £1000 in lost earnings and it's terrifying to think that I will become homeless from not being able to pay my rent. I just feel like I'm hurtling towards homelessness/death, or just spending the last days of my life sleeping on friends sofas til I die. Getting PIP seems like an impossibility at this point because technically I can still 'work' just at a much-reduced ability. Have I just got to work until I'm blind/disabled and hope I get government money to 'live' on - and is that even enough to run a flat and eat enough and not freeze to death?
 
Hi Steve,

Have a warm welcome to the forum from me.

Yep, I know what you mean, I’m not self employed, but do proudly graft.
When did you last see your diabetes team & do you have access to a sensor?
 
Steve770077 said:
Hi folks, I've just joined the group. I've been type 1 for four years, M aged 45. My big question is how the heck does everyone else cope with plummeting down a spiral of ever-decreasing health and not being able to pay the bills? I'm self-employed, live alone, and I get sick for weeks if I just catch a cold / virus (last month I was in Hospital for a few days to get my Ketones back down but in agony for weeks.) Catching a cold for me literally costs me at least £1000 in lost earnings and it's terrifying to think that I will become homeless from not being able to pay my rent. I just feel like I'm hurtling towards homelessness/death, or just spending the last days of my life sleeping on friends sofas til I die. Getting PIP seems like an impossibility at this point because technically I can still 'work' just at a much-reduced ability. Have I just got to work until I'm blind/disabled and hope I get government money to 'live' on - and is that even enough to run a flat and eat enough and not freeze to death?
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PIP is not a means tested benefit, you can work and still claim, not saying it will be easy to get, it’s very difficult to get and it’s done on a points scored system. it isn’t rewarded on the condition you have but how it affects you on your day to day life, if you do decide to claim remember to fill it in for your very worst day, speak to citizens advice they are very good at helping fill in PIP forms.

There’s a website that is very useful, gives you tips and buzz words to use and helps you with your scores but at the moment I can’t think what it’s called. I use it when claiming for my son, I’ll see if I can find the link for you. There a free bits and some you pay for and if you can afford it it’s worth paying for the extra help
 
Found it for you

PIP claim help, plus ESA, DLA & Universal Credit

Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments, reviews, appeals.
www.benefitsandwork.co.uk www.benefitsandwork.co.uk
 
I think it's worth getting some help with how you manage your diabetes when you're ill. I caught a viral infection 4 weeks ago which I'm struggling to shift but monitoring my BG levels more often than normal means I do the insulin injections more often to stop the BG levels climbing. I've also hiked up by background insulin.

Not perfect but I've kept the ketones down.

Do you have a diabetes team to support you?
 
Steve770077 said:
Hi folks, I've just joined the group. I've been type 1 for four years, M aged 45. My big question is how the heck does everyone else cope with plummeting down a spiral of ever-decreasing health and not being able to pay the bills? I'm self-employed, live alone, and I get sick for weeks if I just catch a cold / virus (last month I was in Hospital for a few days to get my Ketones back down but in agony for weeks.) Catching a cold for me literally costs me at least £1000 in lost earnings and it's terrifying to think that I will become homeless from not being able to pay my rent. I just feel like I'm hurtling towards homelessness/death, or just spending the last days of my life sleeping on friends sofas til I die. Getting PIP seems like an impossibility at this point because technically I can still 'work' just at a much-reduced ability. Have I just got to work until I'm blind/disabled and hope I get government money to 'live' on - and is that even enough to run a flat and eat enough and not freeze to death?
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Hi Steve, I am not sure type 1 diabetes automatically means any illness is worse than it otherwise would be. Perhaps this is in part due do your control, which sounds like it could be quite bad at times if you are going to the hospital for Ketones issues.

I've had type 1 for nearly 20 years but catching a cold for me seems the same as it is for anyone else. My experiences with Covid-19 and flu have also been mild. With this in mind, maybe this is not to do with diabetes at all? Or maybe it's not entirely related to it.

I should say it is possible to stave off blindness and having limbs amputated if you adopt an informed and disciplined approach to control. Discipline with diabetes actually allows you to live your life to the fullest because you're not having to deal with unexpected highs and lows all the time.
 
HI @Steve770077, I do feel for you as the current economic climate is super challenging for so many, even before adding in the extra mental effort and discipline needed to control Type 1 diabetes.

But I think you may wish to break down the issues facing you into manageable parts. You need to work, but often feel too unwell, take far too long to shake off infections, horrible DKA recoveries, etc - so how to address your health is possibly your first priority. Do you feel you understand fully how to use your insulin(s), how do you self monitor your blood glucose levels. Do you know what your latest HbAC1 is? Do you have access to diabetes support from GP surgery, dedicated diabetic support nurses at your local endocrinology clinic or equivalent? Have you asked anyone there for support that you feel you are not coping? Do you believe your health issues are all diabetes related or are you possibly suffering from long Covid or something else? If diabetes you CAN improve this (even Type1), but the jury is still out on long Covid.

In the meantime, there is some good advice re claiming possible economic benefits above. Please let us know how you are getting on, but the more you are taking control yourself the better you will feel even if only in small steps.
 
I would say a newly diagnosed type 1 reading your post would feel like jumping in front of a train ! it's not all doom and gloom and you can manage it as well as you like , I have been type 1 for 47 yrs and I bet I have only had about 10 days off in that time from the odd hypo so I would say sit back and have a more positive approach and think what you can do to improve things for yourself there are plenty of people you can ask including this forum , I hope you all the best for your future just don't give up .
 
jaywak said:
I would say a newly diagnosed type 1 reading your post would feel like jumping in front of a train ! it's not all doom and gloom and you can manage it as well as you like , I have been type 1 for 47 yrs and I bet I have only had about 10 days off in that time from the odd hypo so I would say sit back and have a more positive approach and think what you can do to improve things for yourself there are plenty of people you can ask including this forum , I hope you all the best for your future just don't give up .
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Ten days off with 47 years of Type 1 is fantastic. I'm probably on about three days off work on aggregate during 20 years of diabetes, so about the same ratio.
 
Yes like I said it's not all doom and gloom but we shouldn't get smug about it , there must be a lot of luck involved on my part as to begin with I didn't really look after myself that well , I just like to point out to people that they shouldn't give up you can still enjoy life as much as anybody else .
 
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