When you sign up you will be asked to complete a series of questionnaires designed to help researchers understand more about the realities of living with MS including physical and mental symptoms and wellbeing. Then, every 6 months you will be invited to complete the same set of questions to monitor and gather data on the progression and management of your MS.

Data captured by the UK MS Register has been used by researchers within Swansea University, across the UK and even in Europe to answer important questions about living with MS in the UK.

Participation is completely voluntary, but I feel that taking part is extremely important for giving researchers the data and insights they need in order to develop a cure for MS and also for health bodies when making decisions about services and treatments that should be made available to those people living with MS. 

I’m a patient at Southmead Hospital which is part of the North Bristol NHS Trust and the MS team there is fantastic. One of the huge benefits of being a patient there is that they have a dedicated MS psychologist. If you are diagnosed in Bristol, they have a team who guide you through your MS diagnosis in the first few months including a physiotherapist, psychologist and MS nurse. 

I was actually diagnosed in Salford and moved to Bristol, so I didn’t benefit from the “onboarding” process. However, after a few consultant sessions during which I would cry (a lot!) my consultant told me about the MS psychologist and asked me whether I would like to have some sessions with her. I had never talked to a mental health professional before as I didn’t consider myself to be struggling with my mental health on a daily basis. However, it was clear through the conversations with my consultant, that while I was dealing with life on a daily basis well, there were clearly underlying issues to do with my MS that I wasn’t processing. 

All of the sessions were very focused on my MS diagnosis, so there was no “tell me about your childhood” cliched psychology moments! The purpose of all of the sessions was to help me identify how I really felt about my MS diagnosis and work out how to move forward without crying when I thought about what my future with MS could look like. 

This anger meant that I was constantly battling against my MS and every time my symptoms flared and I ended up in bed, the experience was twice as bad. This was because not only did I feel like my life was being put on pause, but I was also getting angry about it and this was having a hugely negative impact on how I felt about myself and my future.

My lovely mum has said to me that it takes 5 years to grieve the loss of something, whether that be a life or a relationship or another kind of loss. I can definitely see that now I am in my fifth year of living with MS, I am definitely on the other side of the grieving process. In fact, I feel like I’m thriving and that anything is possible again, but it has been a long journey with many ups and downs and twists and turns along the way.

Instead, she suggested that I try to look at my MS as a friend that I care for and carry with me. So instead of pushing against it, I carry it at my side and we move through life together which uses a lot less energy than fighting. Of course this makes sense, but I found this quite hard to accept as a concept as I was still in a place where I didn’t want to accept it! 

Over time and having attended different coaching courses I have now got to a place of acceptance. While MS is something that I live with and which is part of me, I am kind to it, because I am kind to myself. I listen to what my body needs which could be sleep, it could be exercise, it could be more water and I give it what it requires. This isn’t even something that only people with MS can benefit from, it’s something that we can ALL benefit from as listening to our bodies and giving them what they need is essential for looking after our wellbeing. 

I am now calm on days that my symptoms flare and instead of fighting them, I take action to make sure that I have the time and space to rest.

Moreover, my tangible results after six sessions of seeing an MS psychologist were that my results on the anxiety and depression scale improved hugely and I no longer cry in my consultant appointments! Result! 

I also want to say that I now talk about my fears, but truthfully, after my coaching course, I no longer have fears in any part of my life which you can read more about here.

Please comment below and let me know.

After about 1 week the numbness receded from my waist, but persisted in my legs and feet. This lasted severely for the whole summer and meant that while I was travelling in Spain I had to have regular breaks and rest in the afternoons (hello siesta time!)

Over the following few months, my symptoms got milder but were still present every day and would sometimes get worse. The numbness ended up being pretty consistent beneath my knees, but would sometimes get worse and it would creep further up my legs, and I would feel more exhausted.

Between September and December 2017 I went to South America and worked as a tour leader again which involved being very active and my symptoms were mild enough or non-existent to not bother me for the whole 3 months.

Since being self-employed, my symptoms have improved a lot and while they do fluctuate in severity, I have many more days when I don’t have numbness and when I have energy, versus days when I do not. What I class as a “bad day” is when I get that full body exhaustion when my whole body feels heavy and I can barely drag myself out of bed. My head feels foggy and I struggle to concentrate on any task. The numbness will spread up to my knees and my left hand and some of my lower left arm will feel numb and very heavy. 

So this is a complete representation of my experience of MS until now. If anything changes, I’m sure I’ll write about it elsewhere, but I’ll also update any major changes in symptoms here.

Let me know by leaving me a comment below.

Anyway, since being diagnosed with MS I have had a difficult relationship with exercise and managing my weight as I have found it difficult to find the right balance between keeping fit, burning calories and not completely wiping out my energy reserves. I recently discovered that my attitude towards exercise is “all or nothing” which has been frustrating and disheartening at times. I am still learning, but I definitely think that I am beginning to learn how keeping fit with MS works best for me.

In this blog, I’ll share my experience with different kinds of exercise and what my weekly routine now looks like.

I had barely run before, let alone run 10km and it would have been an achievement for me without MS, let alone with it. Yet, one dark January night while I was feeling a bit sorry for myself as I was recovering from a cold, I decided that I didn’t want to let MS win. So, I signed up to run the Bristol 10km in May. That gave me about 4 and half months to train and so I downloaded the 10K Runner app and began to run 3 times a week. 

Training for 10km race

I really liked the app as it helped you to build up stamina and started really slowly which was what I needed as a novice runner. My body would get hot and my legs would get heavy when I ran, but as my symptoms were still pretty severe in general at this point it didn’t seem too big a change in severity. Plus, as I started my training in the winter, I found that it was more comfortable to run in the cool air than when it got warmer in the spring months.

There were definitely days when I didn’t feel like training, but I had used the run as an opportunity to share my diagnosis and set up a fundraising page, so the pledges helped to keep me motivated. In the end, I completed the Bristol 10K in 1 hour 4 minutes and raised over £1000 for the MS Society. I was really rather overwhelmed by the generosity of my friends and family!

Not the right balance

Nowadays though, while I really like running, I do find that it has a high cost with regards to my energy levels. Since quitting teaching and changing my work-life balance, my daily symptoms are greatly improved. As such, when I run, my legs and hands feel heavier as my core body temperature heats up even if they were ok before I started running and to me it’s not worth triggering my symptoms. Also, I have always wanted to get back up to being able to run between 7 – 10 kilometres and the training tends to go well for about 3 weeks before I get completely exhausted and end up not exercising at all for weeks!

So, for me, running is not my preferred exercise for keeping fit with MS unless it is a short 10 – 15 minute run. I have definitely had to let go of the idea that if I run 7km then I can eat what I want!

I originally tried it as it said that it only took 20 minutes each week and that it wasn’t necessary to do any other exercise. Each 20 minute session provides the equivalent benefits of 2 hours in the gym, so I thought it would be a good option for me with regards to managing my energy levels and it has been. Plus, my lovely German P.T. Barbara had 5 clients with MS in her studio back in Germany, so she is very understanding about my needs regarding effort and energy.

Everyday (more or less): 7am walks aiming for 10,000 steps

Once/ week: 

• 20 minute Bodystreet session
• 30 minute Guided group meditation 
• Yoga session