T1 30 years, just lost driving licence due to HU and giving up

[AliHammy]

Hi
Having a bad time with losing driving licence. Deep diving into depression and losing any reason to go on.
Sorry for being a pain. Some advice from another T1 who’s been in a similar situation would be so kind.
Love to all xxx

 

[Matt Cycle]

Hi Ali and welcome to the forum. Sorry to hear you're going through this. I lost my licence a couple of years ago following a hypo resulting in a car accident. Looking back my awareness had been getting worse although you don't suddenly think 'it's stopped working'. As advised by the consultant I'd been trying to run my levels higher to try to improve my awareness but on MDI my control could be somewhat erratic. I was in the process of getting a pump but in the meantime the consultant advised the DVLA to revoke my licence. It was a real pain - relying on lifts to get to work, affected my role at work in terms of any driving, visiting people etc, but I managed to survive without a car.

The pump took longer to get than expected and then I had to get used to using it. Since being on the pump with much better control my awareness has improved and I reapplied for my licence in October. The consultant supported this and along with the CGM data from the clinic I got my licence back on Christmas Eve. It was a long painful process but is proof it is possible to get your licence back. How do you manage your diabetes - pump or MDI? Have you tried running levels higher to improve awareness?

 

[AliHammy]

Hi Matt,

Thank-you for sharing your experience. Glad to know you got your licence back. Also glad that you have support of consultant.
Am using MDI with Lantus x2 and Humalog. I’ve not seen the same consultant more than twice for the last 4 years so am not well supported I’m afraid and this is at 6 monthly appts.
Am in the grieving zone at moment because am the only driver for towing caravan and long distances. Feel like we’re never going to get on holiday again with van and dogs nor can I take our dogs to the park across town.
Can use train for work thankfully.
Just devastated right now and can’t find will to do much at all anymore.

 

[HOBIE]

Welcome Ali 🙂. Like you I would be very upset. Life at times ? I am going to get myself an Electric peddle bike. I had a lend of one & got 26mph on the flat out of it. Good luck with things Ali.

 

[Matt Cycle]

Hi Matt,

Thank-you for sharing your experience. Glad to know you got your licence back. Also glad that you have support of consultant.
Am using MDI with Lantus x2 and Humalog. I’ve not seen the same consultant more than twice for the last 4 years so am not well supported I’m afraid and this is at 6 monthly appts.
Am in the grieving zone at moment because am the only driver for towing caravan and long distances. Feel like we’re never going to get on holiday again with van and dogs nor can I take our dogs to the park across town.
Can use train for work thankfully.
Just devastated right now and can’t find will to do much at all anymore.

What were the circumstances of losing it? Had you reported lack of hypo awareness on the renewal form? What did the consultant say?

I can understand the grieving as I think when I lost mine it was shortly after I'd had the car accident which really shook me up (no injuries but the possible consequences of what might have happened) but when the reality of having no licence for at least a year hit that was very difficult. With the DVLA revoke letter mentioning bus passes I swallowed my pride (I don't consider myself disabled in any way, shape or form) and applied for the ENCTS bus pass which proved useful. Although this had limited use in terms of getting to work with there being only 4 buses a day at odd times. With all the driving being dumped on my OH in terms of ferrying the kids around etc it proved to be quite difficult on a personal level. However I didn't have a choice and still had to get to work, appointments etc so not having a car became the new norm and thanks to friends and colleagues and trains/buses I managed to get by. It's not always easy but it just means sometimes doing things a different way. The time will pass (quicker than expected for me 😱 ) and hopefully like me you will get it back. I just need to get a car and all the expense that entails! 🙄

 

[AliHammy]

Welcome Ali 🙂. Like you I would be very upset. Life at times ? I am going to get myself an Electric peddle bike. I had a lend of one & got 26mph on the flat out of it. Good luck with things Ali.

Love it - this made me laugh for the 1st time in ages. Sounds like a great way to relieve my stress. Might invest in one and try to go faster

 

[AliHammy]

Hi Matt

Consultant said that I shouldn’t be driving because I told them about HU. Next step is for me to let DVLA know in writing. Not sure if they have already told them. Work got me an occupational health interview and I was also told not to drive because no longer insured. They even said that carb counting was so out of date! This also sent me into another spiral of despair!

Have not got courage to contact DVLA yet.
Seeing DSN on 2nd to help me do this as stuck in twilight grief zone over Christmas.

Thanks for all the replies as they are really helping me feel not so alone.

 

[KARNAK]

Hello @AliHammy welcome to the forum, a smile to buck you up 🙂. I lost my licence for 6 months but with help of this forum I managed to regain it last summer. The biggest help I found was learning to carb count I cannot believe you were told, "They even said that carb counting was so out of date!" what a statement! My DSN & Consultant were impressed that I actually do this in my last review in November. Please phone DVLA asap do not email they are very helpful they will send you a form to fill in.
Medical conditions 0300 790 6806, hope this helps?

 

[Pigeon]

Hi Ali, sorry to hear about your situation, I would be very upset about it too. I'm not in the same boat, but one of my colleagues was in a crash a few years ago while her husband was driving (turned out to be Meniere's disease causing him to lose balance) and he has lost his license, he keeps hoping to get it back but has not made it to 1 year without another attack yet. It was a horrible time for them and difficult as he works an hours drive away, however they are doing ok and have found ways round it. They were very pragmatic about the fact that the crash could have been horrible (on a dual carriageway roundabout with 3 kids in the back) but thank fully nobody was hurt and he just wouldn't trust himself to drive again. So they have found ways around it e.g. he stays with colleagues in the week, she does all the driving but they have changed their holidays to do more city breaks or travelling by train to cut down on the long drives.

Hobie's suggestion of an electric bike is a good one, or as Matt says look into bus passes and trains. For holidays have a look at seat61.com, we used it this summer to go to Italy by train, as we didn't want to drive a long way and flying is a hassle, and it was a brilliant holiday. You can get a 2Together railcard to use in this country for discounted tickets - we bought ours with Tesco Clubcard vouchers!

I know all of this is not the same as having the freedom to drive wherever and whenever you want, but hopefully you can still find stuff you can do and enjoy and just get around differently in the meantime then get your license back in a year.

Don't know why Occy Health would say carb counting was old fashioned, it's the best way to good control as far as I know. If your hospital is not very useful try doing https://www.bertieonline.org.uk/ it's an online carb counting course. Keep a good BG diary and brush up your carb counting and things should improve. Have you read https://www.amazon.co.uk/Diabetes-Children-Adolescents-Adults-Health/dp/1859591531 as well, it's a great book that probably taught me a lot more than the hospital! I'd recommend asking for a pump as well, hypo unawareness is one of the NICE criteria for getting a pump and I got one a year ago and it's been fab! Far fewer hypos and better HBA1c. Feel free to browse the pumping section on here and ask any questions.

Hope you're feeling a bit brighter today, take care

 

[Matt Cycle]

Hi Matt

Consultant said that I shouldn’t be driving because I told them about HU. Next step is for me to let DVLA know in writing. Not sure if they have already told them. Work got me an occupational health interview and I was also told not to drive because no longer insured. They even said that carb counting was so out of date! This also sent me into another spiral of despair!

Have not got courage to contact DVLA yet.
Seeing DSN on 2nd to help me do this as stuck in twilight grief zone over Christmas.

Thanks for all the replies as they are really helping me feel not so alone.

Hi Ali. I don't think your consultant/clinic will contact the DVLA it is up to you. Mine told me to contact them and left it with me. In 30 years I'd had one occasion about 15 years ago where my OH called the paramedics to a hypo and then there was the car accident. So two assisted hypos in 30 years and the DVLA guidelines state you're allowed 2 per year! All other hypos I'd dealt with myself. Obviously the awareness is the crucial part. In theory I suppose I could have carried on driving but that wouldn't have been the most sensible decision and if anything happened I could have been in serious bother. I phoned the DVLA medical branch explaining the situation and they sent some forms out very quickly. I returned the forms and they then contacted my consultant who phoned me to explain what she was going to advise them, i.e. I shouldn't be driving. I then got the 12 months revoke letter from the DVLA telling me to return my licence, the fact I could appeal the decision, bus passes, when I could start to reapply etc.

My work also arranged appointments with Occ Health. The nurse knew next to nothing about Type 1 so I wouldn't take what they say about T1 management and carb counting very seriously. It was more to do with the practical aspects of the loss of the licence such as getting to work etc, whether I could work more at home and so on. My work is mainly office/lab based but I do occasionally visit sites so she advised on that. I work for the Civil Service and they were very accommodating and it didn't cause too much bother in terms of affecting my job.

Believe me though the time will pass quicker than you think!

 

[SB2015]

Hi Matt

Consultant said that I shouldn’t be driving because I told them about HU. Next step is for me to let DVLA know in writing. Not sure if they have already told them. Work got me an occupational health interview and I was also told not to drive because no longer insured. They even said that carb counting was so out of date! This also sent me into another spiral of despair!

Have not got courage to contact DVLA yet.
Seeing DSN on 2nd to help me do this as stuck in twilight grief zone over Christmas.

Thanks for all the replies as they are really helping me feel not so alone.

Hi Ali

I have not lost my license, but I can understand how frustrating it must be to have lost your license. As others with this experience have said they have found ways round it and I hope that you can too. It may give you a chance to experience different types of holidays for the year

As @Matt Cycle said, with regard to carb counting the OH person you saw is bonkers. It is the carb counting that helps us to manage our diabetes more effectively. So stick with that.

On MDI I found it very difficult to keep my levels within target, and when I switched to a pump life became a lot more flexible and I was able to reduce the number of hypos and hypers. The use of Libre made another step change and improved my control. When you see the DSN on 2nd it may be worth enquiringly about these devices.

 

[Flower]

Hello and welcome @AliHammy , sorry to hear you're going through a tough time.

I lost my licence about 20 years back, it was through sight loss but when I manage to get some sight back in one eye I was hopeful I could regain my licence however I lost my hypo awareness and that was the end of it.

I would keep knocking on doors at your clinic for help and any courses that may be available to you to pick up on subtle hypo signals/ fine tune your control plus any changes in medical equipment such as pump or libre/cgm. It is so tough to lose your awareness without having to cope with the realities of not having a car parked at your front door. As Matt says you can apply for a bus pass which is very useful as long as there is an adequate bus service in the area.https://www.gov.uk/apply-for-disabled-bus-pass

I know there is a study/course for hypo awareness restoration details here,https://www.harpdoc.org/join-the-study but it is based at London hospitals I think.

Don't despair although I know the realities of losing your licence and the ability to be spontaneous and access wherever you want is devastating. Work with your DSN and consultant to try and find a way to get back awareness and I hope things do improve for you. 🙂

 

[AliHammy]

All posters, thank you so much for all of your responses. They are helping me to rebuild.

The OH interview was a slap in face especially because I’ve been CHO counting for 15 years or more. Fingers crossed for the DSN meeting on the 2nd. Thanks so much for the comments about this.

I Like the travel suggestions but with 2 border collies and not being able to drive is hard for holidays and time out. I’ll work on my head about this. The dogs have been amazing at reducing my weight and blood pressure. OH can’t tow caravan or tell left from right! Hence the grief.

Have sent info for Dexcom6 but no news yet. My last assisted hypo was 5 years ago and I self-treat hypos as per DVLA guidelines prior to driving. I will challenge the consultant advice on the 2nd Jan because 1st time I saw them they said only walk dogs after a meal! Not such good advice for normal living. 6 months ago!

Am now angry that consultant has not offered advice nor assistance in the 2 times I’ve seen them and instead has made a decision with huge impact. Am I the patient or the am I being thrown away? May now look into NHS complaints.

Hey - that is a huge change in emotions! Thank-you all so much again for assisting me get to this fighting back point. Might even start checking my blood sugar again.

Have noticed a forum for driving- shall I ask for thread to be moved over there?

Love you all xxxx

 

[AndBreathe]

All posters, thank you so much for all of your responses. They are helping me to rebuild.

The OH interview was a slap in face especially because I’ve been CHO counting for 15 years or more. Fingers crossed for the DSN meeting on the 2nd. Thanks so much for the comments about this.

I Like the travel suggestions but with 2 border collies and not being able to drive is hard for holidays and time out. I’ll work on my head about this. The dogs have been amazing at reducing my weight and blood pressure. OH can’t tow caravan or tell left from right! Hence the grief.

Have sent info for Dexcom6 but no news yet. My last assisted hypo was 5 years ago and I self-treat hypos as per DVLA guidelines prior to driving. I will challenge the consultant advice on the 2nd Jan because 1st time I saw them they said only walk dogs after a meal! Not such good advice for normal living. 6 months ago!

Am now angry that consultant has not offered advice nor assistance in the 2 times I’ve seen them and instead has made a decision with huge impact. Am I the patient or the am I being thrown away? May now look into NHS complaints.

Hey - that is a huge change in emotions! Thank-you all so much again for assisting me get to this fighting back point. Might even start checking my blood sugar again.

Have noticed a forum for driving- shall I ask for thread to be moved over there?

Love you all xxxx

Ali, you're in a rotten place at the moment, and I do hope things look brighter in a few weeks.

I'm not T1, so can't add too much to your thread, but if you have been T1 for a long time, do you carb count, by referring to carb units, or exchanges? I have a friend at our local DUK group who talks about exchanges, where 1 exchange is the equivelant of 10gr carb. That's how she carb counts, rather than referring to gr of carb in a meal.

Just wondering if that's maybe something to do with it?

Look after yourself.

 

[Madeline]

Hi Ali, and welcome. I do understand exactly how you feel, I lost my license this autumn due to uncontrollable brittle asthma and sight loss. It’s a grieving process, as well as the total headspin of how to live with that reduced mobility - we live in a very rural place, and I was the only driver so we are really feeling it too. Online shopping has been a godsend, I think we’ve probably funded Amazon this Christmas, but it’s been a nightmare for my daughter getting to college, as there’s only one bus a day, a mile and a half walk from the house. Good thing she’s a tenacious little s*d!

I have learnt to accept it. Keep focused on the knowledge that you will be able to reapply, and direct the anger energy into motivation. See if you are eligible for any additional benefits. Good luck lovely.

 

[SB2015]

Hi Ali

Two coli dogs. They are gorgeous. Our Coli was the only pet I have ever had, and not really a doggie person but have always liked the colli dogs I come across.

If your last assisted hypo was five years ago, I am unsure why you lost your license. I may have missed something in the earlier posts. You have made me want to check the rules and regs again.

 

[Robin]

If your last assisted hypo was five years ago, I am unsure why you lost your license. I may have missed something in the earlier posts. You have made me want to check the rules and regs again

I think it’s the Hypo Unawareness clause that AliHammy has fallen foul of, having mentioned it to his consultant. That results in loss of licence, according to the rules.

 

[SB2015]

I think it’s the Hypo Unawareness clause that AliHammy has fallen foul of, having mentioned it to his consultant. That results in loss of licence, according to the rules.

Thanks Robin. I had missed that at the start of Ali’s post.

 

[Honeybee73]

Hi
Having a bad time with losing driving licence. Deep diving into depression and losing any reason to go on.
Sorry for being a pain. Some advice from another T1 who’s been in a similar situation would be so kind.
Love to all xxx

I had a form for my eyes as well as diabetes / ticker.

Specsavers got funding for field vision tests - the employee was unhelpful stuck myself on rubbish chair with 26 year old operating automatic machine.

Apparently I fauled the test - they sent me to hospital eye department.

I already go to this eye department with the same consultant the dvla paid privately for.

Incidentally he had written to dvla saying i had acceptable vision for driving - theu ignored this letter & sent me anyway.

Went on a year and then dvla wrote to gp about my diabetes for license, apparently they started doing this to insulin users.

Its scary i was so upset - especially when mother in law ( doesn’t drive ) said hubby will have to taxi you like me shes . Shes 70.