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Need pump holiday but too scared

MushyPeaBrain

MushyPeaBrain

Well-Known Member
Messages
647
Type of diabetes
Type 1
Treatment type
Pump
I have read the other thread about people taking a break and I really want to. I think my sites need me to. I have several areas that cause problems every time I use them now. Basal works ok but bolus doesn't. I have altered my ratios etc but then when I stop that area I have to revert back to previous settings. I have been pumping almost 5 years now and my sites are limited and tired.

I have got used to the tight control on the pump and I am so scared of going back to the BG levels I had before. I am scared of injecting too. I have needle phobia and had to use a penmate. Going back to 4 or more jabs a day, which always hurt, really scares me. I am scared I will become too ill to care for my son. I am just so scared and yet I feel my body needs the break. I don't know what to do. I wish I could be as brave as all of you.
 
Can I ask if you have discussed all this with your pump DSN/Consultant?
 
I discussed the problem sites with them a few months ago and they weren't that helpful. They feel that it's up to me how I handle it and I can either try other sets (which I have) or take a break. They weren't nasty - just not understanding and supportive of my worries.

There seems to be a shortage of DSNs at my clinic so speaking to those is near impossible. A few years back I had a fab one that I could ask anything but she has left.

I think I will start by seeing if I can get Tressiba for a pump holiday. I had so many issues with Lantus and Levemir I'm allergic to so trying this new one would hopefully ease one worry.
 
I felt exactly the same as you.... We been on these pumps for a long time "mushy"....

I feel as scared as you... I really do but after reading soikers posting I know I need a break.

I am so lucky though that I have the best consultant possible and the nurses too. They care for me so much that they keft the decision to me. We discussed it at last meeting in May and I had another call with DSN after and I still wasn't convinced as on good days I absolutely remain between 5-6 constant. However the bad days and having to change sets everyday was convincing me. Spikers post gave me the courage to go and do it. I have nothing to really lose. A bit of freedom back... As well.

Snap with levimir and lantus too....

At end if day though it is only the individual that can make the decision... You will keep the pump so it may just be a holiday!!!
 
I think you're brave. I've been on my pump for more than 11 years and one thing that terrifies me is having to go back on long acting insulin. The long acting insulin was the reason I went on the pump. I had horrible hypos and was almost too frightened to sleep because I was scared I wouldn't wake up.

I do sometimes have site problems eg I can't use my tummy for sites at all as it just doesn't seem to work. Every so often I have a major panic that I'll run out of areas that work for sites. I actually asked my consultant about what would happen if I did. However, a change of sets sorted that out a lot.

Are pump holidays common? I'd never really thought about them until I read about them on here. Is it something that's encouraged to give your body a rest?
 
@tim2000s I had looked at those but I would need to use them where I put my pump sets so I wouldn't be resting the sites. I have given my tummy a rest after 30 odd years so although it's too messy for pump sets I can inject it. My legs are so thin they hurt and pour blood when I inject. I can't use the 4mm needles because I got lumps. Also the penmate only goes to 8mm needles. Thank you for the suggestion though.

@donnellysdogs thank you for the encouragement. I think seeing you and Spiker do this makes me want to try it too. I guess I just have to take the leap of faith. I keep telling myself it's not forever. Just to help the sites heal.
 
azure said:
Are pump holidays common? I'd never really thought about them until I read about them on here. Is it something that's encouraged to give your body a rest?
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Its been known for some pump users to go back to MDI when on holidaying and then go back to pumping on their return.

@MushyPeaBrain, its a shame your DSN left last year and you've not had the support since then, if your thinking about using Tresiba as your basal insulin then I'll tag a couple of people who use this insulin @robert72 @smidge
 
Degludec is a double red for prescribing in some CCG's (my consultant has to state why my case as an individual). May get refused by my CCG... Am waiting to hear now...
 
donnellysdogs said:
Degludec is a double red for prescribing in some CCG's (my consultant has to state why my case as an individual). May get refused by my CCG... Am waiting to hear now...
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My consultant prescribed mine and my GP whinged about the cost :eek: I did have to make a case for it though (allergic to Levemir, variable control with Lantus).
 
MushyPeaBrain said:
I think I will start by seeing if I can get Tressiba for a pump holiday. I had so many issues with Lantus and Levemir I'm allergic to so trying this new one would hopefully ease one worry.
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It's worth making a case for Tresiba - it sounds as if you had similar issues to me with Levemir and Lantus.
 
Yes @robert72 Levemir made me so ill they thought I had chronic fatigue syndrome. I had so many tests and then I was getting these horrendous lumps every time I injected it. Lantus just hurt and didn't give me any control. If I have to fight for it what is the criteria from getting Tressiba please?
 
MushyPeaBrain said:
Yes @robert72 Levemir made me so ill they thought I had chronic fatigue syndrome. I had so many tests and then I was getting these horrendous lumps every time I injected it. Lantus just hurt and didn't give me any control. If I have to fight for it what is the criteria from getting Tressiba please?
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I think basically your case is as you say: that you had a bad reaction to Levemir and poor control with Lantus. Tresiba (around £72 for 5 carts) is quite a lot more expensive than Levemir and Lantus (around £42 for 5 carts) so you might find resistance on cost grounds. Best to talk to your consultant first.
 
I hope you are able to sort out funding for Tresiba in order to give your sites a rest @MushyPeaBrain and @donnellysdogs

Using a pump has been a life saver for me and although removing Lantus from my life was the best thing ,my skin/cannula sites are really suffering after 16 years on a pump. It's a really important issue and pretty near impossible to do anything about apart from care and attention and a lot of set changes. It's good to read I'm not alone - not good to read that you are struggling-but it is an ongoing worry for me where I'm going to keep putting sets with reliable absorption.

I can usually just about make 2 days on my infusion sets but no longer and at the moment have 2 areas under my rib cage reserved for my pump sets but not much area to rotate the new sets. My CGM has to go in my stomach and the skin there is pretty battered.

I wish you both well on whatever pump break you are able to take.
 
I spoke to Accuchek today. Got some interesting advice and also asked that they look at people on this forum that are coming off pumps for lean or struggling with sites etc....
I really appreciate Accuchek and the wonderful advice and help they have given me but again I put a new set in this morning and again I have problems tonight... So I know I can't continue living like this.
The CCG 25 miles away will fund tresiba degludec.. Mine its double red lined and individual basis only....and like you with consultant letter pleading on my behalf!! It really is beyond belief sometimes...

Will let you know how I get on.

Mushy... Don't let yourself feel like a quitter....we aren't... We are **** strong people. We deserve to know that our sets are working.. We don't.. We csn't guarantee they are... So we are entitled to look at other options that may be available and have a go... It may be that it us for a holiday... It may be a better option but we don't know....i am s**t scared like you of coming off the pump... But it is impacting upon the quality of my life too much now.
Thankyou @Flowerpot... It is good not to feel alone....
 
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