How long have you had MS?
I was diagnosed definitively in June 2002.
When did you first suffer MS-related bladder symptoms?
They started in February 2002 and were one of the initial manifestations of my MS.
Can you describe the bladder symptoms you experience?
Initially I had an urgency and frequency problem. I felt as if I had to ‘go’ a lot and very urgently. Now it is more an inability to empty completely because I don’t sense my bladder being full. This became apparent through continual urinary tract infections that would not resolve easily. A post-void residual test showed I was retaining quite a lot.
Have your bladder symptoms changed since diagnosis?
Yes, initially I just needed to urinate frequently. This turned into more urgency and an inability to actually perform the natural emptying function. Summer heat makes my body less co-operative.
How do your bladder symptoms impact on your lifestyle?
Initially, the need for a rest room governed my activities, but now self-intermittent catheterisation (SIC) keeps things stable. SIC has given me much greater freedom and released me from always needing a rest room.
How did you first hear about self-catheterisation?
I read about it on various websites. It became a reality for me after I went through urodynamic studies and a cystoscopy, which determined the need to combine medicine with SIC. My doctor then taught me SIC.
What were your doubts and concerns about self-catheterisation?
Quite honestly, during week one I worried about my ability to learn my own anatomy and be able to perform self-catheterisation with one hand leveraging a mirror, and the other manoeuvring a catheter. By week two it became much easier and was not awkward any more. I no longer needed the mirror and trusted my experience using the ‘touch method’.
Did you receive support from healthcare professionals during the learning process?
I have an email relationship with my urologist and his assistant. This electronic medium helped me to get answers to any initial questions.
What impact has self-catheterisation had?
A very practical benefit is the ability to sleep through the night without having to get up several times. I also play ice hockey and bladder issues no longer interfere with this as I can manage them. I think of SIC as a ‘tool’ to stay healthy and I refer to catheters as my ‘hoses’. Humour and perspective is important to me and I do not let pride get in my way.
Any advice for others who may be sceptical about learning self-catheterisation?
SIC is so simple and no big deal. Don’t be nervous. You will gain your freedom and the psychological investment will quickly pay off. Find your own style, your own way to accomplish this. It becomes very natural, very quickly. I carry a small pouch containing a 6inch catheter, a mirror, cleansing wipes, and antibacterial hand gel. I have several pouches and stash them in backpacks or wherever. With MS it is much easier to do SIC than try to let nature do its own thing. Go for it, don’t look back, just move forward.
Diana, thank you for sharing your story.
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