Waiting is torture!!

This week’ blog post is going to hopefully not be the only one!!  I’ve got a few Christmas posts I’d like to do too, but this first one is about the catheter!! It has also been unfortunately waiting for a week now because I’ve been struggling to keep on top of everything this week. I wrote the first half last week and the second today, I hope it will still be ok!!

We started C day (catheter!!) by attending a Christmas wreath workshop at a local garden centre. Mum and I did one between is again (we did it between us as we’ve only got one front door in the house and did the same last year when we attended as well!!) We had a good time, and it was a good distraction from the afternoons appointment!!! This was our attempt, what do you think??

I have been waiting now for the district nurse for an hour and a half, and when you are waiting for something time seems to go slower.  I haven’t been looking forward to this, not because I don’t want it but because my anxiety and brain have been on overdrive.  I’ve been overthinking it all since they told me they were coming, but also they didn’t give me an exact time rather we were told that it would be after 2pm.  Of course me in my anxiety ravaged brain have been thinking that because they weren’t here at 2pm they’ve either forgotten me, cancelled me, thinking I got it wrong and they weren’t coming today, thinking that I’ve got the day wrong, thinking that if they park in the drive my dad won’t know and will try to pull in and this list goes on and on and round and round making my stomach churn and my anxiety heighten which has left me basically not able to properly function.  Added to that earlier this afternoon I found out that my niece’s guinea pig has died, and since I have looked after it and am not allowed my own pet (much as I’ve begged for years and have spoken briefly about before) I have taken it rather badly and was in tears a while ago, which OK sort of makes my mothers point for not allowing me a pet for years when my first pets died because I get so upset.  I think however that it is mainly the timing too because I am so stressed that all my other emotions are even more heightened,  or that is what I’m telling myself because I still really want a pet!!!  So anyway I’m still waiting, I shall finish this post after she’s been so that I can hopefully help by going through this journey with you (and hopefully not getting into the realms of too much information) so that I can help others understand what it is like going through this.

So that was written last week whilst waiting for the nurse.  She did show up at 3.30pm, she was a lovely young nurse and was very kind.  I shall go through my first week with you briefly and let you know how I’m getting on.

I coped OK for the first couple of days, with my sensory side I was unsure how I would react to the catheter itself and the bags but it wasn’t as bad as I thought.  On the first weekend I did end up with a very wet leg after my bag popped off my valve and so I was obsessively checking it every few minutes!!  I also had one of my hypersensitive days for the first couple of days so do admit to feeling more uncomfortable than I thought I would.  You see most of the time I don’t have a huge amount of feeling in my lower body, it feels like I have big thick bandages around my legs and any touch is through that shroud.  I haven’t really felt myself need to go to the toilet in a couple of years now, hence the need for the catheter in the first place.  However I do have the odd day where I am hypersensitive, everything hurts and I feel every touch and every pain more than twice as much as I would if I could feel “normally” again.  On these days I just have to put up with everything because not a lot works to stop this, I know if I can ride out these days they will pass and I will go back to my usual state of being a little numb!!  So my first few days did pass rather painfully, I felt bruised and sore and every movement felt as though the catheter was pulling.  When I got over these days however I pretty much didn’t feel it again, unless of course I did something without thinking about it like sitting down before making sure that the catheters straps were seated in the correct positions. This is what I mean, here’s some piccies of the catheter (please excuse the state of my legs etc) meet Cathy (yes I’m THAT person who has named my catheter, I decided that it was nicer to refer to Cathy being full rather than my catheter!!!)

I have to “train” in how to use my valve so that I can move away from the leg bags unless I’m going out or need the reassurance.   After the first couple of days I started turning it off for half an hour at a time for 3 times a day.  Now I have to admit here that brain fog, and doing anything for a set amount of time really doesn’t work well!!  The first few tries ended up being about 45 minutes long, and I only managed one or 2 in the day!!  I did get a lot better towards the end of the week and for Thursday and Friday I managed the full half hours 3 times during the day.  I am now onto an hour 3 times a day and thankfully that worked a little better and I have done that.

In the usual style for me though the whole thing hasn’t gone that smoothly, as I said before the valve had popped off and it’s now done that 3 times.  But the biggest problem has been that the order of all my supplies hasn’t come yet.  I was given 10 night bags, which you attach at the end of the leg bag and are supposed to go on a stand, which of course hasn’t arrived yet.  This is what we came up with for now…..

 All my night bags ran out on Sunday night, so I was panicking as the catheter nurse had been on Friday and said that she would arrange for an emergency supply so that I could manage until my supplies turned up.  Nothing had come on Saturday so I rang up the on call service and late Sunday (5.30) the nurse turned up with one more pack.  I just hope that my bits come as I now have nothing else spare apart from those bags!!

So it’s not gone too badly, but not 100% smoothly either.  I am still hoping that I will be allowed the more full time versions of the catheter in the new year, because while I’m coping better than I thought I would with this version I can’t say I would want it full time forever.  I will have to sort something out for the bags as they slide down my leg, and being a larger size the straps and bits aren’t geared to me so I have been researching.  I am thinking of getting a couple of leg bag covers, because while I’m fine with my catheter being tucked away under trousers it would be nice to wear a skirt or dress some time in the future and I’d rather that the bag wasn’t on show.  Also if you have to have a catheter you might as well make it as bearable as possible and for me that means covering!!   While finishing writing this post it’s all gone even worse.  The supplies still haven’t come, the district nurses first said that they would chase for me and are now saying that I need to (you can see how bad telephone calls are for me on another post).  The night bags they gave me as an interim don’t work properly as they don’t drain correctly and so at 2am when I got up my leg bag was half full, which at night shouldn’t happen.  I am struggling with the stress of it all, and to add insult to injury when the nurses phoned to say that I had to chase the order they also told me that if I think I have an infection (which we suspect I might have) I have to take myself to the doctors with a sample.  This is in total contradiction to what the nurse told me when she came round on Friday just gone to change the valve etc.  I have no idea where I am with it, what I’m supposed to be doing and why it seems that I am destined for nothing to ever go smoothly……….ever!!

So until next time, when I hope to start Christmas on here………well better late than never hey!?!  For now I will finish with one little hint of what’s to come, as today I decorated our Christmas cake.  Mum bakes it, I get to decorate (as it’s one of my many hobbies, and I don’t get to do it as much as I’d like to) so I had fun with this one.  While it isn’t one of my most intricate or best designs ever, I’m rather pleased with it because while doing it my POTS decided it wanted to rear its ugly head and I was sweating up a storm.  Thankfully I managed to get it finished, because I’m losing so many of the things that I loved to do and I don’t want to lose this too!!

What do you think?  Have you decorated your cake?  What, if anything, would you like me to write about to do with my catheter?  Let me know if I can answer any questions you have, I will do my best to try and fill you in!!


5 thoughts on “Waiting is torture!!

  1. Hi there, if you can get hold of them I recommend using Aquasleeves to hold your leg bag in place rather than the straps – they hold it firmly in place and are a lot more comfortable than the straps. Your continence service doesn’t sound very helpful tbh but not sure what can be done about that.

    Wish you all the best with it – it does get easier, honest!. X

  2. Happy Christmas – whenever you start it!
    Love the crafts, and I see you are an ace at them, very nice distraction form the not fun bits of things. I’m glad you are able to craft and so well.

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