Where to get help?

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Lizzie

Well-Known Member
Relationship to Diabetes
Type 1
Hi

I went for an appointment with the doctor. It was pretty standard, tick tick tick the boxes and bye bye. No questions about my state of mind, no foot check. Just a dash through the very basics.

I feel I need more than this. I feel like I am fighting and struggling alone with my diabetes and I don't know where to go for support and help.

Can anyone suggest anything?
 
Which doctor? GP or diabetes clinic doctor? Any future appointments planned?
If no help from GP, then next suggestion is to request referral to diabetes clinic.
If diabetes clinic doctor wasn't much use, then ask to see diabetes specialist nurse / dietician etc who might have more time to address issued beyond "tick boxes".
 
Sorry it was the doctor at the diabetes clinic. The next appt is in 6 months.

I have seen the dietitian before. But I know everything she tells me. I know what I should be doing. But I can't do it. I want someone who can help me look into my feelings and lack of motivation with my diabetes, and go into detail on how I can make lasting changes. The various doctors and nurses and dietitians I have seen in past years tell me what I know already - eat more healthily, do exercise. That does not work. However good my motivation is while in their room, it ebbs and fades away within a short time. This cycle of trying and failing is not working. But I don't know how to change it. I know I need intensive one to one work to do so because the bad habits are so ingrained. Now they are threatening me with bariatric surgery which makes me feel scared and trapped and upset.
 
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I only have my GP, and he is often as much good as a sieve in a leaky boat. Persoanlly I get more support from here than I do anywhere else, but we are all different and someone else may have other ideas.
 
Hi Lizzie

Sorry to hear you are feeling a little cast-adrift by your care team.

Do you have access to a (full-on) DSN? Some of these are a fantastic source of support and information. (Fully qualified Specialist Nurses are quite different in level of training to practice nurses with an interest in diabetes).

Is the person you see at the clinic a specialist diabetic consultant, or more of a general doc?
How long is it since diagnosis?
Did you go armed with many pointy questions?

If it was your annual review then your feet should have been checked, as should your eyes.

My own experience in visits it that I get a bit more back if I present issues/concerns/theories for my team to consider and comment on. I get very little when I answer the question 'How are things going?' with 'Fine...' but far more when I say 'I've been trying to tackle bg spikes after breakfast, here are x weeks of readings, here's what I've tried... what do you think...?'

Apologies if you are doing this sort of thing already.
 
Hi

There are nurses at the clinic but I don't see them.

I don't know if he was a specialist diabetic consultant or not. I see a different person each time I go anyway which doesn't help with the disconnectedness I am feeling.

I don't know what questions to ask or where to start. I have never been any good at seeing any pattern to my blood sugars. On DAFNE I did not understand how that worked or which insulin to change in any of the textbook examples they gave us. I understood and applied the main idea of basal and bolus insulin plus correction doses. But I have always been rubbish at anything beyond that. Maths is not my forte and I have this blindness or block when it comes to thinking of patterns or the larger picture. I just check and then eat if low or correct if high. I lack the motivation to write down my blood sugars anyway since I don't really understand what to do with them. I usually only write them down in the week before the appointment. Today the doctor did not even ask to see them anyway.

I know I have all these complex feelings about my diabetes too which affect my self care. And it is hard to vocalise these. Especially when the doctor is rushing through and just wants you out so he can get on with the next person. Asking for help is really hard too.

I get my eyes checked at the Eye department which is separate from the clinic.
 
Hi Lizzie sorry to here your getting such terrible support, unfortunetly it is am all to common occurance in this place many have had shocking support and some none at all,on a personal level I was treat terribly for the first 6 month and it even culminated in me changing my GP since I have i have never had such great support,im not suggesting you go down this road but if you're not happy with the care or lack of your getting from one of the people you would expect it most from then maybe see about a change.Do you have any diabetic freinds you could have a good chat to? x
 
Hi Lizzie. Your post echoes largely how I felt, although I had far better care from the teams, but I just gave the answers that Mike said, such as "Ive got no real problems, just the odd high or low" and they would assume all was well, look at a reasonable HbA1c while inside I was fighting the urge to scream for help.

Would you consider looking for the emotional help beyond the diabetic clinic, such as counselling ?

I only really faced up to my resentment of diabetes in the last month or so. I feel better able to beat it into submission now I have it in perspective.

Rob
 
Hi Robster (and others)

It is a relief to know others have been through this and it is not just me moaning or making a fuss.

Robster you are so right I resent my diabetes with a passion and have done since I was diagnosed (at 11, I am now 28). I feel it traps me and stops me from eating what I want and doing as I please. I inherited it from my dad who died when I was a baby. I resent him also, I feel that he did not care for himself despite having a wife and 2 babies, he still put off vital surgery which could have saved his life. I feel it would have made things a lot easier if someone close to me with T1 had been able to support me and at least understand what I feel a little. I have felt I am alone with this since I was diagnosed. Nobody has tried to help me, not really. I have made efforts to help myself but since I have no structure in my care and I am struggling alone, these efforts have all failed.

I have tried counselling but I have not yet found a counsellor who understands. They just say the same as the doctors, tell me all these common sense things. Yes I know I should exercise. I know I should eat fruit and veg. I know all that. But I can't, and I want to know why not.
 
Just some idea that might get you exercising more.
What interests you? Music? Art? Natural history? Industrial history? Old castles? Stately homes? Gardens?
If you let us know your interests (and location), we would be able to suggest places to walk or cycle. Personally, I'm not very keen on just going for a walk or ride, but cycle and walk many miles each day just getting to / from work, supermarkets, seeing friends etc.
Orienteering is for walkers as well as runners - more fun to wander round a park or forest looking for control flags. There are permanent courses in many areas, or you can join in events - many are suitable for beginners, particularly "CATI - Come And Try It" in September.
Geocaching is another option to get out and about - using a GPS machine to find clues and / or plastic boxes where you sign a book and swap goodies.
 
I'm obviously not qualified to offer any advice, but could you forget the diabetes and sort of keep it ticking over for a while but concentrate on your grief and anger (which is a natural part of grief) ?

Have you told any counsellors about your feelings towards your dad ?

The right counsellor could help you get these feelings out without feeling guilty or suppressing them.

Is your diabetes more or less ok at the mo or are you facing complications ?

Rob
 
Hi Lizzie, sorry you have not been able to find the emotional support you need within your health care team. It might be worth, as others have said, seeking out the DSNs at the hospital clinic, some of them are fantastic and you may be lucky.

Whereabouts are you based? I think one of the greatest things for me has been to meet and chat with other people in the same situation. There are Circle D groups for people 18-35 that have some really lovely people as members and I am sure they would welcome you with open arms - it can be a real bbost to your confidence and motivation. You can find out more at this website: http://www.circledrocks.co.uk/

You are, of course more than welcome at any of our forum meets - we'd love to see you! Look in the Events section and see if you can make a day out to come along 🙂
 
Lizzie said:
I lack the motivation to write down my blood sugars anyway... I usually only write them down in the week before the appointment. Today the doctor did not even ask to see them anyway.
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I have so completely been there (for almost all of my diabetic life).

Over the last few years I have had a combination of typical male bull-headedness about advice:
'Doc/nurse suggested this, they clearly don't have a clue - that won't work for me'

and felt trapped by the completely randomness of it all:
'Oh for goodness sake! I ate pretty much exactly that yesterday and it was fine, but today it's sent me all over the shop - what's the point'

February this year I had a pretty nasty hypo, which sort of jolted me out of my complacency. Since then I've tried to tackle some issues I knew I had lurking with my diabetes (like waking up hypo 2 or 3 times a week). For the first time I sought out forums, such as this one, and found support and ideas from others.

I began writing things down (it was nowhere near as much of a hassle as I thought). More importantly since I wrote not just bg levels, but also my estimate of carbs and doses taken, and in some cases particular meal types, and whether I'd done anything active, I ended up with information I could make sense of:
'OK so last Saturday we had this same breakfast, and I went low midmorning, so I'll try a unit less bolus today...'

It wasn't all plain sailing and there were a few things I could not understand, but I did begin to feel much more in charge of my diabetes (not that I really ever felt I wasn't). The other thing about having some results written down, was that I could, and did, occasionally ask forum peeps their opinion, and got some interesting ideas back as a result.

Hope you manage to find something that works for you 🙂

Cheers
M
 
Hi

I am in London. There is a lot to do here I know. But I just can't be bothered to do it. I am not social at all. I have always had problems with eye contact and small talk etc and find it very hard to get along with people and think of things to talk about. I have tried to socialise but it just ends up in awkward silences and most people socialise in the pub which I hate. I mostly spend my evenings watching TV on the sofa with my boyfriend. I don’t have the motivation to go out and try all these things Copepod suggests. I know if I went out there I would spend the whole time alone in my little bubble, silent and awkward. It is always the same. The things I enjoy are solo and escapist and sedentary – reading, TV, films. I do like museums though. I am rubbish at participating in anything and tend to get very frustrated with myself when I fail so I avoid anything that involves competing since it is humiliating as an adult to be in floods of furious tears but they just come, I can’t stop them. I have always been bad at sport and associate exercise with frustration, self hatred, embarassment and generally negative feelings so I avoid it. I know nobody is bothered or looking, my feelings are more to do with myself, and frustration about being so bad at things, than they are about other people.

My BF doesn’t help. He means well but he just has no understanding of what I need him to do. His family are not the healthiest and he doesn’t eat very healthily. I know it is not his responsibility to look after me. But if he is sprawled on the sofa watching TV and eating fruit and nut, it is too tempting to join him, and I lack the will power to go out alone in the rain and exercise. He might join me but the impetus would have to come from me to get him out there, and I don’t have that sort of willpower at the moment.

Robster – my diabetes is OK – HBA1C 7.4 today, BP fine, weight too high though and still climbing. Background retinopathy.
 
Lizzie, you and I have a lot more in common than you might imagine! 🙂

This might sound a little strange, but I would urge you to get hold of a copy of Procrastination: Why You Do It, What to Do About It. It was a HUGE eye-opener for me! You may not consider yourself a procrastinator, but it's really all about the reasons why we avoid doing things that we think we won't enjoy or that we might fail at. I've been doing it all my life, and I couldn't believe how well this book described how and why I had done (or not done!) so many things in the past. I'd love to know what you think if you read it (don't put it off! do it now! 😉)
 
OK, well now we know something you like, how about picking a museum and walking to it or get bus / tube part of the way? There's absolutely no need to talk to anyone, nor make eye contact when walking. There are days when I prefer to walk alone and some when I prefer to walk with others, now as in the years when I lived in London (3 1/4 years plus 7 months another time), usually with an A to Z in my pocket in case I got completely lost, but often just heading for a high building or knowing what side of the river I'm on is enough navigation.
Some museums have film shows - again no need to talk to anyone, just sit and watch. British Film Institute on South Bank would be a good place to start looking. But you'll have got a bit if exercise on the way and seen something you're interested in. Plus, London probably has more free museums than any other major city, so there's no need to go on busy days when they're free. Admitedly, museums are busy now, because it's school holidays and peak tourist season, but September is usually quieter, the weather's not too cold or wet, and there's still plenty of daylight, so you can walk in evenings while it's still light.
Nothing wrong with being solo and escapist, and perfectly possible to be active, too.
 
Those are good ideas Copepod. I do go to the South Bank a lot as I live nearby but I should walk there more rather than get the bus.

Northerner - that book looks good. I have just got it. I hope I don't end up procrastinating and putting off reading it though! 🙂
 
Lizzie said:
Northerner - that book looks good. I have just got it. I hope I don't end up procrastinating and putting off reading it though! 🙂
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I'll confess it took me a while after buying it to get round to reading it, but once I had I knew why! 😉
 
Lizzie said:
I lack the motivation to write down my blood sugars anyway since I don't really understand what to do with them. I usually only write them down in the week before the appointment. Today the doctor did not even ask to see them anyway.
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I am sorry to hear how you are feeling - have you tried calling Diabetes UK? I have called them in the past and found them very helpful, they have trained nurses etc that will speak to you about how you are feeling. With regard to your blood sugars, I am appalled that the doctor did not ask to see them! My diabetes clinic is not the best, they do not look at my feet or ask about feelings in general but they always go over my blood sugars and give advice in that respect, that is the main point in going!

Hope you feel better soon.
 
Sounds like you could be starting an interesting journey Lizzie. 🙂

Like many, there's been a lot of happenings in most of our lives and I know that I'm not out of the woods with my 'issues' but I can see the light.

There are a few social anxiety forums but you have to be careful you don't get told what to do. Take it all in and do what feels right. And drag your BF along too. If you can both get fit and reclaim your self-esteem together, you'll have twice the fun.
The diabetes can stand a bit of sidelining for a few weeks, as long as you carry on with injections and don't binge. 😱

Best of luck with it and let us know how you get on.

Rob
 
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