The mental weight of diabetes

[Flower]

I hope this doesn't come across as me being too negative. I've always had good care from the NHS and I know these are extraordinary times. The past few months I've felt really weighed down by the fear and worry of diabetes and the complications I live with, they're longstanding and aren't going to improve and my best hope is for them to stay stable.

I've got the words of my orthopaedic surgeon going round in my head from the last phone appointment I had 11 months ago. "Let me know when you can cope with an amputation" I can't cope with an amputation that's where I'm at and said I would keep going as long as possible with my leg in a cast ( I've got Charcot foot with collapsed bones and no ankle joint & I've run out of surgical options to try and fuse my foot to my leg). I was coping ok until Covid hit after which the vital high risk podiatry clinics I relied on to try to keep my skin healthy and intact under my cast were stopped. I've had 4 phone appointments to ask how I am but podiatry by phone is pretty pointless as far as I can tell. I can have an emergency appointment if I have a wound in my foot but with amputation as my only option apart from the status quo I can't afford to get a wound.

I'm paying for private podiatry to give me the best chance of keeping my leg for as long as possible and the podiatrist I see can't believe that I'm not being seen by an NHS podiatry team. I've lost the safety net I used to have to protect my foot to my best ability and it is causing me so much fear for what might happen.

I keep seeing adverts and articles stressing the vital importance of diabetic foot care, foot checks, seeking immediate help yet the reality I'm in is a DIY/private podiatry/ fingers crossed/ hope nothing goes wrong scenario that is really scaring me.

I'm finding the mental drain of dealing with chronic illness difficult to cope with at present and I realise there are so many diagnoses, clinics,surgeries & treatments that people can't access with far worse outcomes than my leg. I hope things improve and I hope I feel less scared some time soon.

 

[Inka]

That’s awful @Flower I don’t have any practical advice but don’t be afraid to fuss a bit and be a little pushy if you feel your care is lacking. Sometimes we have to do that to be heard.

Mainly, I wanted to send you a hug and to say that you have all of us here behind you and rooting for you. XX

 

[Flower]

Thanks @Inka I feel a bit better having written down some of my head! I have asked for help from all sorts of places but the clinics aren't running apart from emergencies. Diabetes UK were helpful and suggested who I could contact but the answer is still no regular clinics, they also advised me to join the forum - which is fab advice - but I'm already here!

 

[eggyg]

Flower, you are always so positive so you have every right to whinge. It is a shocking situation to be in, Hobson’s Choice springs to mind. Can your private podiatrist make referrals at all or at the very least contact your GP? Apart from us all on here having a sit in outside your NHS podiatry team’s office until they deign to physically see you, I’m at a loss.
But I will say….keep strong and keep coming on here for a rant. We don’t mind at all if it helps. Hope things improve soon. Big hugs.

 

[Leadinglights]

You would think podiatry is one of the things that could be done at a safe distance being as far distant from the nose and mouth is it is possible to get. It is appalling people are being denied monitoring that could prevent long term suffering.

 

[Inka]

Another thought @Flower Are there any studies or trials you could get on? I don’t know if they have any but if that was an option you might get increased monitoring through that.

Is there also a psychologist you can access due to the difficulties and worries with your foot? Someone to talk things through with.

 

[PattiEvans]

Oh what a mess. I have no valid advice for you, but your predicament touched my heart and I just wanted to send you some {{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}

 

[Drummer]

Hopefully you will be treated as in need of urgent action once things start up again.

 

[Bloden]

I just don’t understand why your clinic isn’t up n running again. 😡 It’s shockingly poor. I’m so sorry to hear the effect this is having on you @Flower. You’re being severely let down. All I can do is send you (((HUGS))). I wish I could do more!

 

[SB2015]

So sorry that you are still getting no support from the clinics @Flower

If you can’t whinge here where can you? like others I have no practical advice but just a big
(((((((((((((( hug)))))))))))).

 

[nonethewiser]

What to say, feel so sorry about your circumstances flower.

One suggestion is try your local MP, it's something they should be aware of & might be able to help, worth try anyway.

 

[Neonpossum]

What an awful situation, you have every right to be upset about it! Hopefully you can get the care you need asap, I'm so sorry you're going through this.

 

[SueEK]

Ah @Flower what a horrible situation you are in. I am surprised podiatry is not up and running in your area, it definitely is in ours. Really your GP should be pushing HARD for you to be seen as this is also affecting your mental health as well, understandably. Sometimes being stoical actually has an adverse effect and being forthright is the right thing to do. I truly wish you well, sending hugs to you xx

 

[Sally71]

Most things are up and running round here too, keep shouting until they do something! That is appalling treatment, hugs x

 

[New-journey]

Oh Flower, sending such big hugs and love, you have every right to moan. I have been reading your posts for the last five years. I have been so awed and inspired at your amazing upbeat positive energy. You deserve better treatment and it is shocking and wrong you are not getting it. I am so sorry about that. being scared is natural and you never come across as too negative, even when you are going through such huge challenges. Sending so much support and {{{{{{{{{{{{hug}}}}}}}}}}}}}}}