MikeyBikey - The Road Back

[MikeyBikey]

Now I am in Rehab I thought I would start a new thread as "MikeyBikey Is Unwell II" is getting long and disjointed.

I have had a physio assessment which at times was rather confusing. In addition.i saw the doctor (a GP js here M - F, 9;00sm - 05:00pm). briefly (full MOT to come). Sadly the insulin issue is not resolved. The increased Isophane saw a slightly high 10.8 this morning but they saw it is lowish and will only let me have 1/3rd my usual Neutral!

So it is a book of positives and negatives so far dominated by the bizarre insulin issues! ☹️

 

[rebrascora]

The title sounded positive but the text a bit less so. Really don't know how you are containing your frustration over the insulin situation! 😡

Hopefully the physio will start to become clearer as you get into it on a more regular basis. Will you get a session every day? The important thing is to ask questions if it doesn't seem to make sense to you. Knowing why you are doing something and what it is supposed to achieve really helps to figure out if you are doing it right when you practice between sessions. Really hoping this is the start of a new chapter for you.

 

[Leadinglights]

Now I am in Rehab I thought I would start a new thread as "MikeyBikey Is Unwell II" is getting long and disjointed.

I have had a physio assessment which at times was rather confusing. In addition.i saw the doctor (a GP js here M - F, 9;00sm - 05:00pm). briefly (full MOT to come). Sadly the insulin issue is not resolved. The increased Isophane saw a slightly high 10.8 this morning but they saw it is lowish and will only let me have 1/3rd my usual Neutral!

So it is a book of positives and negatives so far dominated by the bizarre insulin issues! ☹️

Perhaps you should point out that you have been capable of managing your condition for years and know your insulin needs so for them to be dictating what you need is out of order and should at least be discussed with you.

 

[MikeyBikey]

Perhaps you should point out that you have been capable of managing your condition for years and know your insulin needs so for them to be dictating what you need is out of order and should at least be discussed with you.

Sadly they refuse to discuss and will only do what the doctor says. I sure the GP cannot be that ignorant but the notes from the hospital are messy (and this unprofessional). Whilst the majority of diabetics they encounter may.be elderly and Type II they do have younger people come through the unit such as accident victims. And bolus only if BG over 18 is just plain daft!

 

[rebrascora]

And bolus only if BG over 18 is just plain daft!

Particularly when that patient has been battling an infection in their foot for years and now trying to recover from amputation surgery. It is just beyond belief!

 

[rebrascora]

Do you not have a DSN or consultant whom you can contact to try to sort it out for you? Or insist on an urgent referral to one if you don't. They are compromising your remaining foot and all the work done on it to try to save it, by such a crazy BG management policy.

 

[Natalie123]

And bolus only if BG over 18 is just plain daft!

This is rather shocking although I guess I don't know the full back story to your situation, but I would feel incredibly unwell if my blood sugars were running towards 18 and this would have a negative impact on your recovery as well as your general health and wellbeing. I second what @rebrascora said, ask for a DSN or consultant to be involved in your care. I'm sure it is your right to ask for a second opinion.

 

[MikeyBikey]

My evening BG was 12.8 after eating only a small piece of quiche for lunch with broccoli for lunch
I was allowed to increase my evening Neutral and mix insulins. I was allowed to.fo this for myself as nurses are not allowed to mix insulins
Let's see what the morning brings?

 

[MikeyBikey]

A slightly high 9.8 this morning. The problem is, unlike the main hospital, there is no analysis of the food available! They say they don't want people fretting over calories but I do over carbs and BGs. I will not. be choosing that meal.again. It was salmon crumble but the taste of the salmon was overwhelmed by weak cheesey overtones!

Good news is my nighttime HCA is on a day shift tomorrow and says I will get the first proper hair wash in over four months. When I asked for a hair wash in hospital sll I got was a soapy wipe over.

 

[AndBreathe]

A slightly high 9.8 this morning. The problem is, unlike the main hospital, there is no analysis of the food available! They say they don't want people fretting over calories but I do over carbs and BGs. I will not. be choosing that meal.again. It was salmon crumble but the taste of the salmon was overwhelmed by weak cheesey overtones!

Good news is my nighttime HCA is on a day shift tomorrow and says I will get the first proper hair wash in over four months. When I asked for a hair wash in hospital sll I got was a soapy wipe over.

Mikey - is it worthwhile emailing your hospital diabetes team to ask fr=or some support in handling your insulin situation? Surely, they would understand the importance of your control in so many contexts.

I honestly have no idea how you have coped with the frustration of this whole saga. I appreciate you must be extremely battle weary, but decent blood glucose numbers are so important in healing and rebuilding muscle mass. I can only imagine you have lost quite a bit over your periods of bed rest.

 

[Leadinglights]

A slightly high 9.8 this morning. The problem is, unlike the main hospital, there is no analysis of the food available! They say they don't want people fretting over calories but I do over carbs and BGs. I will not. be choosing that meal.again. It was salmon crumble but the taste of the salmon was overwhelmed by weak cheesey overtones!

Good news is my nighttime HCA is on a day shift tomorrow and says I will get the first proper hair wash in over four months. When I asked for a hair wash in hospital sll I got was a soapy wipe over.

There are extensive guidelines for meals in care home facilities and I would be surprised if similar did not exist for where you are and that should include the nutritional information which should be made available to you. At least that would help with your food choice.

 

[Proud to be erratic]

@MikeyBikey, really sorry to hear your diabetes care remains so disjointed and inappropriate. As others have said do try to get your discharging Hospital Consultant to help guide your current care provider. Can you find online guidance about the importance of reducing Glycaemic Variability and make that available to the GP as well as the Rehab Management Board. Or online advice about the importance of maintaining some TIR!

Also, even though care staff don't have access to nutritional data at the "coal face", I very strongly doubt this is actually non-existent. There will be a contract for the catering provision and that contract will routinely have considerable nutritional requirements along with how the provider will meet those requirements. If the Rehab provider is part of the NHS that requirement for a detailed contract will be a requirement of the NHS. 3 yrs ago I was in an Oxford Hospital where everyone, including a senior Matron and the HPB Ward dietician, said it didn't exist. But it did. Also it was updated monthly and sent by the Hospital Admin Secretariat to every ward, monthly. Because the document title was lengthy and far from specific, on the HPB ward it was filed by the ward manager under something ridiculous and replaced monthly by the ward manager. But no-one saw it, no-one realised what it was - until I found it late one evening shortly before I was discharged. The Matron took steps to make it accessible and messaged various people accordingly.

I don't know how you can get this made available, but perhaps an email to the Rehab CEO, copied to the Management Board; plus a formal request to PALS asking them to find it and make it accessible. Perhaps a phone call to DUK might open a "door" somewhere.

Do persevere. My late brother lost his 2nd leg 12 months after surrendering his 1st leg to gangrene in 2008. This preceded my own diagnosis of diabetes, so I didn't realise the huge medical consequences. I know that during those 12 months he had very little guidance on diet, for a long while had no fp testing and my personal view (in hindsight) is that the medical system totally failed him. Apart from the cost to him mentally and physically, the subsequent social and medical financial cost of providing for him was huge. Various administrators spent a lot of time building walls to slow down any social support for him, each doing their utmost to deflect expenditure from their budget. I spent most of the next 9 years breaking those walls down and make his world just a little bit better. During those 9 years he was solely under the care of his GP and only got some Hospital support during his treatment for cancer of the oesophagus; that treatment was successful. My brother was a technical luddite, wouldn't use the Internet and steadily changed from a high achieving Civil Engineer at the top of his profession to a hugely constrained patient, frustrated at having to accept such limited medical and social support (and expected to be grateful for the poorness of it all).

Keep pushing against the inadequacy of this treatment, @MikeyBikey. Nil desperandum carborundum.

 

[PhoebeC]

Good news is my nighttime HCA is on a day shift tomorrow and says I will get the first proper hair wash in over four months. When I asked for a hair wash in hospital sll I got was a soapy wipe over.

I really hope and cross everything this happens, you will feel so much better just with this. It makes such an impact on how we feel. Such a basic human right.

I cannot imagine how horrible your poor head and skin feels. When I had Jemima I was stuck in bed for only for a few days with soapy wipes only, and my blessed mum washing my face. I hadn't had comb or anything in my hair in 4-5 days and that first shower (followed by immediate bath) was actual heaven. I will never forgot the feel of that clean skin and hair and how it made me feel better, body and soul.

 

[EMcKT]

I am horrified at the lack of care and basic knowledge that some NHS Trusts get away with. You must be pro active in managing your care especially with your circumstances. I was going to suggest you jump up and down, but thought that might be tactless but NO !!!!!! It's your life and your body that's important. I know that some hospitals contract out 'special' meals......Wiltshire Farm foods have a wide range. You must be weary of fighting battles with body and soul. I wish you well.
There will be a five page complaint from my niece to be sent to the various management teams plus the GP when she settles down, that's as well as a letter of thanks and appreciation to the care home for being so kind to her dad in his last weeks. Care can be done

 

[gail2]

A slightly high 9.8 this morning. The problem is, unlike the main hospital, there is no analysis of the food available! They say they don't want people fretting over calories but I do over carbs and BGs. I will not. be choosing that meal.again. It was salmon crumble but the taste of the salmon was overwhelmed by weak cheesey overtones!

Good news is my nighttime HCA is on a day shift tomorrow and says I will get the first proper hair wash in over four months. When I asked for a hair wash in hospital sll I got was a soapy wipe over.

Re the hair wash u canbuy shower caps that have shampoo in them u just put on your head massage for a couple of mins and that's it. They ate on Ebay and amazon