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Portrait of Hayley showing half her face.
by Hayley 26 April 2024

“I focus on the things I can do, rather than the things I can’t”

For MS Awareness Week, we’ve launched MS Unfiltered, a campaign to open up the conversation around difficult symptoms that people with MS struggle to talk about, so that no one feels alone with their symptoms. We spoke with Hayley, our amazing community member, who has shared her open and honest experiences about some of the MS symptoms she has found most challenging. She encourages others to speak out, seek support and not feel embarrassed about any of their MS symptoms. Everyone's MS symptoms vary but please get support, whatever your symptoms may be.

The beginning of my difficulties with bladder and bowel control

I had just had my second child. Everything was fine except the usual things, I was dealing with a new baby and looking after my other child who was 11 at the time. After a few weeks, I noticed that I was struggling with holding my bladder. I was experiencing a lot of urgency, but I put it down to a tricky labour and just assumed it would pass.

I would get my 11-year-old son ready in the mornings and walk 10 minutes up the road to drop him off at school. I would usually stop in a coffee shop to meet other parents for half an hour, then start my walk home. Halfway home I would suddenly need a poo. Sometimes I would make it home but most of the time I couldn’t hold it and would end up pooing myself on the way home. Luckily for me, there was a swimming pool that I frequented halfway home. I would end up running into the pool and go to the disabled changing room. I would take off my clothes and shower and then walk home feeling dishevelled with no pants on.

I would often experience feelings of anxiety on this journey. I don’t think I had any real coping mechanisms at the time and didn’t really think about strategies to prevent this from happening, I just dealt with it as it happened and believed it was just a phase. There was also a library with a disabled toilet at the end of my son’s school road, I can honestly say that I have left many of my favourite knickers all soiled in their baby nappy bin.

Situations where I struggled

One morning, I walked in the park behind the library with another mum. On the way back through the park I could feel the poo building up and just knew that I had to go. The anxiety I felt was tremendous; I was in the company of someone I knew and in a park with lots of other people, there was a long path ahead of me and a little walk on from there was the library with its trusty disabled toilet and nappy bin. I couldn’t run because that would make things worse, but I couldn’t stay as it was coming. I had my baby in the buggy. The other mum knew I had problems with my bladder, so she assumed this was the problem. I let her think this was the case because really bladder problems were nowhere near as taboo as bowel problems. She told me to leave her with the buggy and to go to the toilet.

Looking back, I must have felt more anguish than I let on or even realised. However, I seemed to get on and deal with what I was facing at that time.

Another day, on the train to London I could feel my bladder was about to burst. As we pulled into the station, I could just feel myself wetting and there was nothing I could do to hold it. The only thing I could do was lift my coat so at least I could cover up my jeans with it when I stood up. I felt awful, the seat would be all wet and some poor person might sit in it, I just couldn’t believe it was me leaving a massive urine stain on the seat. My husband was amazing, he asked if I wanted to go home or carry on with the journey. I wanted to carry on as it would feel like a failure if I went home. He told me to go and buy some new trousers and clean up in the toilets. By this point the anxiety had got so much that I could just feel the urine flowing down my legs and puddle on the floor, people were staring but all I could do was look down. I couldn’t even begin to worry about what they were thinking, what would I have said to them? Once in the cubicle I cleaned up and changed and had a good rest of the day with, thankfully, no more leaks, waterfalls or anxiety.

Although I was scared to go on long journeys after that, I did make a few journeys and my family just got used to me having ‘secret wees’ in all sorts of places, behind telephone boxes, up alleyways, in people’s front gardens, in bins on the train, I even managed a takeaway cup (as a woman this is no mean feat!). If I ever saw someone doing this, I would never judge them, I would just feel compassion and empathy.

When I am out in public, I always look for somewhere I can ‘secretly wee’. In the early days my mind would be whirling, do I need the toilet, what if I need the toilet, where would I go? I sometimes think that this anxiety brought on the need to go. All the thoughts whirling around become exhausting.

Seeking support from Healthcare Professionals

After struggling for two years, I finally went to the doctor. She seemed surprised that I didn’t wear a pad. It got me thinking that I should, but I cried when I went to buy them as I felt like I was giving in. The doctor referred me to a fabulous Urogynaecology team at my local hospital. I did a Urodynamic test, where they fill your bladder with water through a catheter and scan you while you say if your bladder feels full.

I had a meeting with my specialist and a specialist nurse. They said they knew what the problem was and how to resolve it. She started with the worst-case scenario, “You could be fitted with a permanent catheter” or the next option was “you could self-catheterise two to three times a day”. Next option … I waited and waited. There wasn’t one. I felt horrified.

I was 42 at the time and felt like they had winded me. Luckily my friend was waiting for me in the waiting area although unfortunately my baby and son were also waiting for me. I cried with her all day whilst my son looked at me confused. It took me a full two years to go back and say, “I’m ready”.

I then had a proctogram with another specialist where I had to drink barium and then poo on a special toilet, whilst being filmed/x-rayed – a dignifying experience! The specialist said there was nothing wrong, but I could use a glycerine suppository to help with bowel movements. I am grateful to say that the suppository helped a lot. I use them most mornings to empty and surprise myself occasionally with what I call a ‘natural poo’.

My MS diagnosis

My Urogynecologist wanted to insert a Sacral Neuromodulation device (also known as Sacral Nerve Stimulation). An SNM can help to restore normal bladder or bowel function. He said that he wanted me to go for an MRI to rule out anything else before he operated. I went for my scan thinking it was just another step towards fixing my bladder. A few weeks later received a letter in the post, saying that white lesions were found on my brain and spine. I had no idea.

I ignored it for a few hours, cooked everyone’s dinner, put everyone to bed and then by 2am started googling white lesions. I woke my husband up and said, “I think I’ve got MS”. My father has had MS for 40 years. He is in a wheelchair but as I always tell people, he is very stubborn and resilient. This stubbornness and determination seem to have got him through. However, I was frightened and uncertain of my future.

I have other MS symptoms, mostly my legs get tired after a short while, and I get annoyed and frustrated that I can’t stand or walk for long periods. As far as my bladder and bowel go, my bowel seems better or at least more manageable now that I have an SNM device and take Mirabegron for my bladder. I self-catheterise at least four times a day. I love my catheters, they are called ‘Speedicath Compact Eve’. I always think they look like tubes of mascara so no one will notice if one drops out of my pocket. I always wear a pad and am grateful, as a black knicker wearer, that companies now produce black pads.

What would I recommend others to do in my situation?

Please, always talk to people. I have found the more I talk about it the more people open up with their issues. The more we talk about it the less taboo the subject is.

Do try and talk to your doctor or nurse about the problems you are dealing with, there are so many options and medications now that can really help. My Urogynecologist referred me to a psychotherapist and specialist physiotherapist, and both helped. When my symptoms started, my world seemed to be closing and now I can honestly say it is opening up. I am not saying that everything is perfect but with the support of my family, friends and health professionals I am more confident in my day-to-day life. I still need to work on talking about my bowel issues, but there is time for that.

Where does Overcoming MS fit in with my life?

I had already heard about Overcoming MS before I was diagnosed, so when I was first diagnosed, I ordered my free copy of the Overcoming MS book. I closed my eyes when I hit the ‘yes’ button on the ‘Do you have MS’ question. When it arrived, I threw the book, still wrapped up in its envelope, to the back of my wardrobe for a good few years.

Later down the line, a friend told me about someone she knew who had MS and how she had felt benefits from changing her diet. The book stayed in the wardrobe a while longer, but I started listening to Geoff Allix in the ‘Living Well with MS’ podcast. Slowly I changed the way I ate, took vitamin D and found my local Overcoming MS Circle. I met some great people, we chatted monthly on Zoom about our cats, day-to-day life and occasionally our MS.

I went to a Pop-Up event which had an impact on my commitment to myself and my lifestyle and I was very fortunate to join a recent Overcoming MS retreat. I found myself in a room full of other positive people with MS, I felt totally at home and felt understood, without even having to explain myself.

I sometimes find myself in situations where I am struggling either physically or mentally, it can often feel frustrating that people just don’t get it. In these times I feel so grateful that I now have my newly found retreat friends out there who do get it. It is very reassuring to know that I do have people to turn to. I now find myself focusing on the things I can do rather than the things I can’t. I know I still have a big journey, but I am excited to be on it and curious as to where it may lead me.

There is so much more to my story. I haven’t even begun to talk about wetting the bed on many occasions and how I maintain being sexy with my husband lying next to me. I am grateful to my husband; he often reassures me by telling me that he loves me and that all these things have not changed who I am. I am mostly grateful for a sense of humour; it really does help one through the darker times! 

From Hayley

Get in touch with Hayley

Hayley has kindly offered that if anyone would like to get in touch with her, to speak about her experiences, you can find her in the Live Well Hub here: https://hub.overcomingms.org/members/17375745

Read more about the MS Unfiltered campaign for UK MS Awareness Week 2024 here.