Join the Conversation on
156 people
0 stories
23 posts
  • Explore Our Newsletters
  • What's New in catheter
    See full photo

    Going to bed feeling content ...... #MentalHealth #Anxiety #Depression #Selfcare #ChronicPain

    Well today I play the computer with little ones ,played some games,made cakes, watched a movie then I managed to move all my living room about which I've been wanting to do for suffering now for it pain wise as I still have this infection (11weeks now) and it did take alot our of me but I feel so much better getting all that done ,and spending time having fun with the little ones especially as I really struggle most days to do anything.
    So the pain now was definitely worth it seeing their little faces instead of them popping and out to see me while im stuck in bed !

    So here's hoping this week is a better week ♥️😊
    Hope everyone had a lovely weekend and is OK 😊

    #MentalHealth #Anxiety #Depression #Selfcare #PTSD #Positivity #Bekind #loveyourself #ChronicPain #AloneTogether #Endometriosis #Insomnia #SkinCancer #GeneralParenting #Parenting #Upallnight #Catheter #InterstitialCystitis

    3 reactions
    See full photo

    One day at a time ...... #MentalHealth #CheckInWithMe #Anxiety #Depression #Selfcare #PTSD #ChronicPain #Catheter

    Ive been a little quiet and really struggling. So after a really hard few days with still struggling with this bad UTI due to the catheter and all the changes & problems ,plus having to have the cystoscopy done then another one put in has definitely made it worse.theres been leaking,blocking ,bleeding,swelling ,and a hell of a lot of pain and tears.I went out the other day for first time to big shop in ages and I leaked I literally cried the whole way home !there's just non stop issues and I feel no one is doing anything to help the situation. I am so paranoid about leaving the house at all now as I'm doing everything properly changing tubes,bags,strapping it up etc but because of the problems in my bladder it causes leaks even when having the catheter in as it bypasses & I retain at I managed to do some house stuff ,and some little self care things I do feel better but then I'm frustrated st myself and my body because of how much pain I'm in now from moving about today and doing stuff (basic stuff)It's really hard getting used to thw changes and my new normal & I am definitely still struggling but atleast today was better than yesterday 😊♥️
    #MentalHealth #CheckInWithMe #Anxiety #Depression #ChronicDepression #Selfcare #PTSD #Positivity #Bekind #loveyourself #loveyourscars #AloneTogether #ChronicPain #SkinCancer #Endometriosis

    3 reactions
    See full photo

    Glad today is over ...... #MentalHealth #CheckInWithMe #Anxiety #Depression #Selfcare #ChronicPain

    Well after a few days of the most debilitating anxiety I have had for a while due to that appointment today & the severe pain I've been in every day even just moving or walking with this catheter issues , I am just glad today is over !!I've done what and all I can do it's now waiting for results and it's out of my hands so I'm going to tey focus on the other problems and trying to get the help I need for them and try not be stressing to much over waiting for the results !! I feel like rubbish, I feel as though I look like death ,I feel as though I'm so drained with all this pain but tomorrow is a new day and I'm going to do my best to try have a good sleep ,wake up tomorrow and put my mind and focus on to other things .....

    #Melanoma #MentalHealth #CheckInWithMe #Anxiety #Depression #Selfcare #PTSD #Positivity #Bekind #loveyourself #ChronicPain #SkinCancer #Endometriosis #COVID19 #longcovid #Catheter #InterstitialCystitis #UTI #AloneTogether #Parenting #GeneralParenting #Insomnia #Upallnight

    36 reactions 10 comments
    See full photo

    Today atleast I tried ....... #MentalHealth #CheckInWithMe #Anxiety #Depression #Selfcare #PTSD

    So lately I haven't really been anywhere unless it's been appointments and even then most of them are at home with nurses etc justnow .I already was struggling majorly with confidence and my mental health struggles due to alot of the symptoms I have either from long covid,skin cancer biopsies(some on my face),severe hair loss, just mentally having been feeling great at all or even ok for that matter.Then now with having the catheter in because its difficult trying to wear things that accommodate to it ,while being on crutches my anxiety has been horrendous!!but today I managed to use the back door of house and just get out to the garden and chill for a bit ,I wasn't having to worrying about anyone seeing or wondering what the bag is attached to my leg since I was just in my own garden, but I was still really anxious and it makes me so sad that through everything I'm dealing with I'm then struggling with worries like that !!I was annoyed at myself and actually proud that I went out ( even if it was using the back door) maybe tomorrow or the next day or even next week I'll try again and use thw front door this time or even sit in front garden (I doubt it at this point but il keep trying )

    #MentalHealth #CheckInWithMe #Catheter #loveyourself #Selfcare #PTSD #Positivity #Bekind #Anxiety #Depression #Endometriosis #SkinCancer #AloneTogether

    28 reactions 11 comments
    See full photo

    Thank goodness its bed time ..... #MentalHealth #CheckInWithMe #Anxiety #Depression #Selfcare

    So after being absolutely demented being on bed rest I thought il just go over myself and get kids from school !!BAD MOVE!!! I knew I was really sore and struggling and still been retaining!then as I leaned over and opened gate to come in I felt the instant pain !I'd had my catheter and tube tied and clipped onto strap on my leg and forgot I couldn't bend really and tried it and it pulled the catheter right out !!so as you can imagine I was screaming !!had to then wait 6 hours for district nurse to come out and put new catheter in ,and plus the fact I was retaining a further 6 hours my bladder was full and putting pressure on my back which caused so much pain !!then once nurses came it took them 3 times to attempt and eventually get one back in and fixed properly so right now I think I'll keep my bright ideas of thinking I can go walks to a bare minimum 😂😂😂🙈🙈

    Honestly my neighbours must have been like what is going on ,me there with my crutches ,opening gate then screaming and waddling into the house !!! So glad it's bed time now & let's hope for a better day tomorrow 🙈😂if I don't laugh right now I think I'd be crying permanently.

    #MentalHealth #CheckInWithMe #Anxiety #Depression #InterstitialCystitis #BladderIncontinence #Catheter #loveyourself #Selfcare #PTSD #Positivity #wellness #Bekind #LaughingAtMyNightmare #AloneTogether

    7 reactions 2 comments

    Suprapubic Catheter Issues!

    I have had my suprapubic catheter for 2 1/2 years. The doctor put in a latex catheter initially and I am allergic to latex. Needles to say, my track for the tube never healed right. I have horrible strictures and constant bloody, sometimes, pus draining from the catheter site. It’s constant. My first urologist told me this is totally normal, and everyone has it that has a catheter. I don’t believe it. Not after 2 1/2 years…. Can anyone tell me if this is something you experienced or still are experiencing ? I can’t grasp that this would ever be normal. Also, every time we changed the catheter, it bleeds horribly, and the pain is almost unbearable. I just want to feel like I am ok. I don’t trust anyone anymore. Not with this kind of mistake, and continued pain and drainage. Help! Thank you to everyone taking a moment to read my question!

    See full photo

    I'm really trying , but it's such a struggle...... #MentalHealth #Anxiety #Depression #SkinCancer #Selfcare

    So I got out of hospital I am still on long term catheter which nurses are coming in most days to check etc ,but my bladder is rejecting it so it's only draining little bits ,my stomach is still bloating as I'm retaining alot and the pain is causing more pressure on my spine,I am in constant pain, I've never felt so damaged through everything I've dealt with till now,Had my emergency app with dermatologist specialist yesterday and she's not very happy especialky with ky history of skin cancer etc so she's put through for an urgent ultra sound scan to be done on my lymph nodes to see what it is and if needs to be removed. The waiting is causing me so much anxiety and my head keeps slipping to dark places like what if it is serious and I won't be here for the kids and tunns of other crazy things .I'm trying to keep focused on little things crafty things I enjoy or organising what I can while sitting on my pressure cushions or in bed ,but dealing with the worrying while in so much physical pain ,using crutches, literally can't do anything unaided ,,trying to keep things as normal for kids as possible, teying to be the best mummy i can right now when im literally falling into pieces and waiting to see if I have to have a suprapubic catheter interested into my stomach because of these issues everything is just too much right now .

    #MentalHealth #CheckInWithMe #Insomnia #Upallnight #SkinCancer #Endometriosis #COVID19 #longcovid #loveyourself #Bekind #Selfcare #Catheter #AloneTogether #Parenting #GeneralParenting

    31 reactions 10 comments

    Part two of my journey

    One day I realized I felt like I spent more time at doctors appointments then I did anywhere else. That was hard, I felt alone and scared. Sitting in waiting rooms with sick people, you cant help but think of your future and what that may look like. I’m 21, most people were older and would just look at me with pity. That’s a weird feeling to describe. Getting to know your doctors and being on a first name basis. Not to mention getting tight with the lab ladies. All these things are happening and there you are just taking it all in.
    Throughout my experience you learn to be your own advocate. This is such an important step. Yes, you have doctors that help guide you through this dark and gray space. But they can only do so much. Only you know how you feel. The doctors are just there to work alongside of you. Yea, its a lot of pressure and overwhelming. But the more comfortable you are with this the easier it will be. My tip to you, do your research. When i got diagnosed with lupus I wasn’t told much about the disease. It was like I was supposed to just know. Excuse me, I’m not the one that went to med school.
    #ChronicIllness #Lupus #PolycysticOvarySyndrome #Fibromyaliga
    #HashimotosThyroiditis #IrritableBowelSyndromeIBS #Asthma #Catheter #ChronicPain #ChronicFatigueSyndromeampME

    See full photo

    When the doctors just don't know

    I can't remember most of yesterday. I know I felt unwell, and I believe that I fell - I was on the bathroom floor when the paramedics arrived. I was taken to hospital, and while I could communicate it was really difficult. They don't know what happened. They don't know why I can't remember and they don't know why I felt unwell. Even when they saw that I hadn't even slightly digested the food I'd eaten over 12 hours before, I don't think they really believed that this happens to me all the time.

    The doctors are telling me to just live with my #Gastroparesis and the fact that I can barely eat and drink. I have endless problems with my #Catheter because I can't drink enough. I keep expelling it and it constantly hurts. My stomach feels like it's the size of a house and I wish I could move without feeling like I'm on a boat.

    I'm losing more and more of my independence, finding harder and harder to spend time out of bed. I wish I knew what was wrong, I wish anyone did, I wish my concerns were not constantly dismissed. I want to try to find the strength and energy to stand up for myself, fight not only for answers but care that might improve my quality of life. But the very reason I need those things makes it so hard to do them.


    How do I deal with this? #Neurological #Incontinence #Catheter

    I have multiple chronic conditions the current combo I’m struggling to deal with is atonic bladder vs functional neurological disorder... managing my self catheterising and when necessary tampon without my neuro symptoms making me make mistakes like.... ending up with two tampons in instead of just self catheterising and other funny but also worrying things like that which when it’s personal care, and risk of infection high how the hell do I get my brain to do things in the right order right place etc etc without the support of anyone?

    1 comment