When your health deserts you, you sort of some days feel a little bit like this picture. So often we take our health for granted until it is no longer perfect – and then we look back longingly at our old fit, healthy life. If you are youngish and get a diagnosis of one the numerous neurological diseases that can strike, it is often devastating news that comes completely out of left field. One of these neurological diseases is Multiple Sclerosis or what we all know it as…MS. Here is a link to learn more about MS. I have really neglected this very important area of bladder management- the problems that MS can cause for bladders. It dawned on me when I saw a patient again for a follow-up visit and as we were talking and she was sharing some of the frustrations with her disease, I asked her to write me a blog about what her journey has been for her. More on that to come.
There is so much more to MS than just the bladder and it is the haphazard nature of relapses that must be the most difficult to deal with. I remember a patient in the very early stages of her diagnosis years ago, who went back-packing to Europe. She was quite young and heading off for her European adventure (as you do) and over there she got a massive urinary tract infection (UTIs)and she came home needing crutches to help her balance and keep her steady because of the severity of the effect of the UTI on her MS. This started a steady decline in her strength and function over the next ten years.
Another feature of the ‘bad’ bladder in MS relates to bladder emptying problems (voiding dysfunction). There can be large residuals left and this then leads to problems with recurrent UTIs and even the need for self-catheterization. With the number of patients we see every day who have overly tight pelvic floor muscles, this can be a problem in the general female population, let alone those with a neurological condition, who often have spasticity (high muscle tone) in their muscles as a routine. So concentrating on the correct position for voiding, taking your time to void (no rushing, no straining) and really focusing on complete relaxation of the deep abdominal muscles and the pelvic floor when attempting to wee are all important things to do. Other muscle stretching and relaxing strategies can help- these are all taught to you by your Women’s Health Physiotherapist.
The overactive bladder (OAB) is a major problem with MS and the symptoms of urgency, frequency, nocturia and urge incontinence are very debilitating for patients. When there is a flare, the physical changes such as weakness and sensory changes can make fast walking – which is sometimes necessary to make the toilet dry – very difficult. So it almost becomes functional incontinence – the physical limitations have been the cause or at least exacerbated the leakage. I have covered the treatment of the overactive bladder in this blog and done a video blog 3 years ago here.
The journey following is from the lovely lady who I was mentioning earlier. The words in italics are written by her.
Who knew on that fateful day in 2004 that I would be told I had MS. For goodness sake, I had gone for an MRI scan for neck pain after a fall while exercising and then I got THAT diagnosis. I must have gone through the Kubler Ross stages of grieving so many times before I finally got my head in the game, “a game of life” that I will play until the day I die.
Let’s jump ahead to now. Failed oral meds, a relapse requiring 19 days of steroids and worsening symptoms of my MS that have affected my mobility, vision and bladder as well as playing havoc with my emotions. Here I was, a 53 yr old woman who was struggling with continence. Doesn’t matter where I was, I scoped out the restrooms as soon as I arrived. I also downloaded the app “Toiletmap”. Where would we be without smart phones and apps that help me find a toilet anywhere in Brisbane or anywhere for that matter in my time of need. Talk about winning the lotto!
In my continued effort to be proactive about my MS, it was suggested I should see Sue. After checking out her website I held high hopes that she could help me (while secretly hoping she could perform some sort of ‘bladder miracle’ and solve my problem). So here I am 5 months later; poked, prodded, given exercises and information booklets, instructions on water intake, as well as removing all caffeine from my diet. Sue may as well have cut out my heart on the last instruction as I really enjoy drinking tea but I did it all the same!
Obedient as I am, and I do use that term loosely, I did have some good results using the various strategies Sue has given me. Don’t forget, I have no hope of being cured as my underlying problem is neurological but I am giving it a good try.
Thank you W so much for sharing your story. It never ceases to amaze me how articulate my patients are when I ask them to write their story.
These few words are a brief insight into some key issues. The shock of the diagnosis; the grieving process that W likens to that of grieving a death; the range of body issues she is dealing with- particularly the emotional rollercoaster; the fact that bladder issues are thought to only affect older women- therefore the humiliation of losing certainty of bladder control which heightens stress and anxiety; and finally the dramatic lifestyle changes that are required – yes W you are very brave to let go of the caffeine- but it is ultimately your decision to keep off it -and if it helps with bladder urgency then it’s certainly worth it.
The other day when I saw this patient, she was in a slightly elevated state of tension. Sometimes this can be because loved ones forget about the burden of chronic disease. And sometimes it can be because women tend to soldier on, still attempting to do absolutely everything, because we think we are meant to. This in itself is not healthy for MS because the fatigue can take it’s toll. We chatted for an hour about managing stress and anxiety effectively, because it won’t help her MS and it definitely can influence the tension in her pelvic floor muscles, in terms of emptying her bladder and bowel. I call the pelvic floor a barometer of our stress and anxiety just like your temporo- mandibular joint (TMJ) is. I have encouraged her to work on relaxation and breath awareness strategies and try some mindfulness and even meditation. I have suggested reducing the number of tasks she tries to battle to do when she is in a flare and to allow herself some power naps to allow rest to her nervous system. She is a very committed lady and I am so lucky she has shared part of her journey with me. (And I am sorry about the ‘prodding and poking’!)
We all have occasions when hiding in the blanket fort and just colouring may look very appealing – but we are women, we’ll be back to make the vegemite sandwiches and give you the shoulder to cry on.
*Name withheld to maintain privacy