#ThisIsMS Day 2020
International MS Day is 30th May every year and last year the theme was #ThisIsMS. Normally, my mum and I would do something together, but obviously last year was somewhat different.
During the pandemic many charities were losing lots of funds and so the 2.6 challenge was created. My mum is the queen of fundraising (she raised over £10,000 for the British Heart Foundation a couple of years ago!) and so she came up with our very own 2.6/26 challenge for us to complete to raise money for the MS Society.
So, instead of being together, we completed thirteen #ThisIsMS activities each. We spent the day apart, but came together on Zoom at the end to share what we had been up to throughout the day (and drink our new cocktail creations!).
The challenges were:
1.Write a poem2.Draw a picture
3.Do a craft – knitting, sewing for 26 minutes
I combined these 3 to create this jazzy creation:
4. Bake a cake
I made my Nana’s decadent (read calorific!) chocolate fudge cake.
5. Find your favourite photo of us and post on Facebook
This is my favourite photo (that I have on my computer!) of my mum and I jumping in the waves off the coast of Valencia...pure fun!
6. Do 26 minutes exercise
26 minutes of Ashtanga Yoga to finish off the day.
7. Create your desert island disc song choices (8), luxury and book
I really enjoyed creating this list and reminiscing about all of the amazing memories that go with each song.
Luxury- Lindt Salted Caramel Dark Chocolate
Book- 100 years of Solitude in Spanish
You can have a listen to the playlist here.
8. Create a new cocktail
My cocktail was a primavera (spring) mojito with spiced rum and elderflower cordial instead of sugar syrup... was very nice indeed while catching up with my mum about our 2.6 challenge day!
9. Take a photo of something unusual from today
This was my beautifully unusual stripy and fluffy tulip that had been flowering since the beginning of lockdown in my balcony. It made me smile every day that it was flowering.
10. Recommend 13 books each
These are my all time favourite books!
11. Contact 13 people each and let them know you are thinking of them
This was a such a nice thing to do, especially during lockdown as it was a lovely way to connect with friends and family to let them know I was thinking about them.
12. Recommend 13 films each
My list of recommended films included:
Ideal viewing during lockdown!
13. Create a photo blog of each of the above and put on social media and email to all who sponsor us.
It was such a great way to do something positive during lockdown. We managed to raise £390 from 23 amazingly generous sponsors!
We will have to come up with a new challenge for this year too! Any ideas? Please share them with me in the comments below.
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What I Learned From Seeing An MS Psychologist
Being diagnosed with MS isn’t just about dealing with physical symptoms, it can also have a profound impact on your mental health. There is a higher prevalence of depression in people with MS, so making sure that you have a good support system in place and access to mental health professionals like an MS psychologist is essential.
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.
Meeting the MS Psychologist
I had the sessions with my psychologist at the Brain Centre at Southmead Hospitalwhich is where I go for all of my MS consultations. She was warm and welcoming and I felt very comfortable talking to her during the 6 sessions that we had.
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.
What I Learned From Seeing an MS Psychologist1. I was really angry
Through my sessions I realised that I was really angry about having MS. I felt like it had stopped me taking advantage of an incredible job opportunity and that many choices had been taken away from me. Ultimately, being diagnosed with MS felt so unfair and I was full of a rage that I hadn’t even been aware of.
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.
2. I was experiencing a huge loss
When being diagnosed with a chronic illness, there is a grieving process that you go through for the life that you had and the possibilities that the life without illness offered. It was an important realisation for me as it helped me to understand my feelings around my MS diagnosis and gave me an awareness and appreciation of the different phases of emotions that I passed through.
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.
3. I was fighting my MS and that is much more exhausting than acceptance
Because I was so angry when my MS symptoms flared, I was fighting it rather than accepting it. This is a really hard thing to do, especially when you’re at the beginning of your diagnosis as there is rage and anger. However, my MS psychologist used the analogy of my MS being like a ball. At the time of attending my sessions with her I was pushing against the ball and using lots of energy fighting my MS and rejecting it. So not only was I exhausted by my symptoms, but I was also exhausted from fighting against them
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.
Outcomes of talking to an MS psychologist
Therapy and coaching are not magic pills that fix everything overnight. What they do give you are the tools to help you deal with life, moment by moment, and face the challenges that occur with power and integrity.
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.
Have you been offered therapy sessions as part of your MS treatment? How do you feel about your MS at the moment?
Please comment below and let me know.
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My MS Symptoms
This is just a quick post so you have some context for where I’m writing from in terms of my MS symptoms and experience.
First relapse
I was diagnosed with Relapsing Remitting MS in May 2015 when I was 27. In June 2014 I had experienced numbness and a loss of feeling starting in my feet which crept all the way up to my waist. I began to have problems with my balance and I couldn’t walk or stand up for more than about 10 minutes without my feet and legs hurting and feeling extremely heavy. When I was at work, I would stand up to walk across the office and realise that my shoes had fallen off my feet and that I hadn’t even noticed because I couldn’t feel them.
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.
Second relapse
A second relapse followed in March 2015 that affected the left hand side of my torso and spread down my left arm to my hand. My left hand and arm felt very heavy and it was exhausting to type on my laptop. This relapse lasted about 1 month, and the numbness in my torso and arm receded, but has persisted intermittently in my left hand.
Ongoing symptoms while teaching
During my two years of teaching in 2015 -2017 my residual symptoms in my feet, legs and left hand persisted strongly on a daily basis. I had no days without symptoms of some form and the stress of teaching one day even led me to losing the feeling down the centre of my forehead. However, this lasted for less than 24 hours and so wasn’t classed as a relapse.
Ongoing symptoms while being self-employed
When I stopped full-time teaching in July 2017 my symptoms improved significantly to the point that I have days without symptoms or when they are barely noticeable.
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.
How are your MS symptoms? What do you do to manage them?
Let me know by leaving me a comment below.
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Keeping Fit With MS
To be honest, I have never been a particularly sporty person so keeping fit with MS is a challenge. I was definitely more music and drama department at school rather than athletic, but I have always been averagely fit. I definitely took it for granted that as and when I decided that I wanted to get fit, I could. I’d start going to the gym for an hour each day or I’d go for runs and after a few weeks I would have got fit and lost weight...thinking about it now though, this may have had something to do with being in my early twenties, rather than not having MS! Getting older is a bitch!
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.
Running
When I was first diagnosed with MS in 2015 I felt out of control. I felt like my body was no longer my own and my symptoms were the worst that they have ever been. I wanted to take back control and seriously considered getting a tattoo (!), before deciding that signing up to run a 10km race was probably the less radical thing to do!
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!
Raising money for the MS Society by running the Bristol 10K
Raising money for the MS Society by running the Bristol 10K
Swimming
Swimming is really recommended for people with MS as it is a good full-body and cardio workout and being in the water keeps your core body temperature down. I really enjoy swimming and always take the opportunity to swim whenever I’m on holiday and we have a pool. However, just as a personal preference I hate how humid public swimming pools are and I don’t like having to plan my swims around the school lesson timetables, so it’s never made it into my regular MS exercise routine.
Gym
I am terrible at going to the gym. It’s just not really my thing. I have the same problems with the gym as running: I’m not very good at moderating how much effort I put into it! In the past I have had the attitude of “wanting to make the most of my visit”. So, I would really go for it on the machines and make sure I do a full hour workout. Again, this has not been great for managing my energy levels and I will do it for a few weeks, before having a sudden crash in energy levels and not going for ages. I know that it would be better to work out moderately for half an hour each day, but trying to fit that around work and the rest of my life has always seemed a huge faff, especially when I have to drive 15 minutes to get to the gym and then the time it takes to shower and get dressed after- eugh!
Bodystreet
Bodystreet is a gym alternative and there is one in my city, Bristol. It uses EMS (Electro Muscle Stimulation) machines which make you look like you’re taking part in a weird science experiment, but I love it! You wear a jacket and straps that are hooked up to electricity and over the course of 20 minutes my P.T. directs me through a series of poses that I have to hold while electrical pulses run through my muscles. I have been doing it for over a year now and have seen huge improvements in body fat loss and increased muscle mass. It also improves my balance as my muscles strengthen and I practice the different poses each week.
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.
Walking
Walking is my new favourite form of exercise! When I was a teacher I used to be on my feet all day and didn’t even notice how many thousands of steps I was walking every day. When I left teaching 3 years ago I put on 7kg just from sitting at a desk all day! Recently, I have started to get up just before 7am and am enjoying 1 - 2 hour walks each morning. I have found these walks so beneficial, not just for my physical health, but also my mental health as I feel stronger physically which makes me feel more powerful and positive about myself.
Dancing
I love dancing! I can salsa and swing dance and it makes me so happy! I haven’t managed to find a class that fits my schedule here in Bristol, but the year that I experienced my first MS symptoms I was living in Liverpool. I had the most fantastic time with the Mersey Swing dance group. Doing things that you love, even if you have to have breaks to take a rest, is so important in staying healthy both physically and mentally.
Yoga
My best friend is a huge yoga fan and she has encouraged me to try it over the years. Thanks to her, we went to a yoga fair at Alexandra Palace a few years ago where I met Veronique Gauthier, who is a yoga teacher living with MS. Veronique taught a special yoga class for people with MS and I was so inspired by her that I went to speak to her after the class. Veronique was the first person with MS that I had spoken to since being diagnosed and she continues to be an inspiration to me. She runs a website called Taming the Walrus where she shares her specific yoga for MS courses and writes about her experience of living with MS. I really enjoy doing online yoga courses as it really helps me with my balance and flexibility.
My Current Weekly Routine
It’s cold and we’re in the middle of a pandemic, but my weekly exercise for keeping fit with MS hasn’t really changed.
Everyday (more or less): 7am walks aiming for 10,000 steps
Once/ week:
How do you keep fit with MS? What are your biggest challenges? Let me know in the comments below!
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How I stopped playing small and being scared
It was a Friday morning in November 2019 and I was sitting in a conference room in Ashton Gate Stadium in Bristol. I was sitting in a room with rows of chairs facing the front with about 90 other people and wondering what the hell I was about to experience for the next weekend.
I was about to attend the Landmark Forum after a couple of friends had invited me to do it for over a year. To be honest, I was there to appease them and thought that maybe I could get some help in improving my business and make more money. I was not there for any kind of breakthrough to do with MS, that is for sure.
The realisation
Within the first 30 minutes our leader asked the simple question, “What future do you want to create?” and it really hit me. I knew the future that I wanted, but I had absolutely no belief that I would ever achieve it because now I had MS. During the 4 years since I had been diagnosed, doubt and fear had slowly crept into my life and wrapped themselves around my future like an ivy slowly suffocating my ambitions and I hadn’t even noticed. I had gone from thinking that everything was possible for me in life to living a small life governed by fear about making my MS worse.
When my leader Michelle asked that question, I put my hand up and shared that I wanted to run a successful business, but that I didn’t think it was possible because I had MS. I also burst into tears. She said that by the end of the weekend I would have “disappeared” my MS. As I continued to sob at the realisation of what I had lost, I agreed to commit to fully participating in the coaching course for the weekend. However, the possibility of “disappearing my MS” didn’t seem realistic and I didn’t really believe that she understood the physical challenges that MS presents and that they aren’t something that you can just “disappear”. However, I was willing to give it a go.
So what exactly is the Landmark Forum?
It is very hard to describe what actually happens during the Landmark Forum. It sounds so simple and straightforward...your leader shares distinctions, you share your experiences and thoughts and feelings and over the course of 3 days, people have epiphanies and breakthroughs in every aspect of their lives. The experience is different for every person as we are all dealing with our own issues, but there are common themes that appear in terms of improved confidence, freedom of self expression, healing of broken relationships etc.
The breakthrough
My big breakthrough that completely changed my life happened on the Saturday night. We did an activity which involved facing your fear. We all closed our eyes for what must have been over an hour. We imagined our biggest fear and were invited to fully feel it. We could shout and scream and get physically present to it (weird, I know, but it worked!).
I suddenly saw a wheelchair and I was absolutely petrified of it. For me, the wheelchair was potentially the end game of having MS. It was the worst reality that I could imagine and not only that, but I believed that if I was in a wheelchair my fiancé Jon would stop loving me.
Through doing this exercise and after having been in the Forum for 2 days, I realised that I don’t need to be scared of the wheelchair. I don’t need to be scared of it, because I am completely in control of how I respond to everything that happens in my life. A wheelchair is just a wheelchair. I had made it mean so many other things: that it would ruin my life; that no one would love me; that I wouldn’t be able to enjoy my life.
The fear of ending up in a wheelchair had made me play small and live my life in an ever smaller bubble. I didn’t push myself while at work and would stop working and give in to even the slightest flare of my symptoms because of the fear of my MS getting worse. I had developed a real paranoia and obsession about getting enough sleep and had got addicted to a sleep app that told me if I’d had a “good sleep”. Even if I felt like I’d slept well, if the app said it wasn’t good quality, I created the reality that my day wasn’t going to go well and that I didn’t have enough energy instead of actually listening to my body. It was a vicious circle.
On the final night of the Landmark Forum, I stood up in front of all the participants, as well as my entire family, and shared my breakthrough. It meant the world to me when my Dad said that he knew I was smart, but he hadn’t known how brave I was. I felt so powerful and I took this power with me into doing the next course in the series in London.
Being more than my worries and concerns
The Advanced Course focuses on the idea that we are all a big body of concerns that run our lives. E.g. I’m scared of what people think of me, I’m tired, I’m hungry, this isn’t fair and it is these thoughts that dictate how we live. The Advance Course aims to have everyone work outside of their body of concerns by working at the level of the group. This involves being responsible not just for yourself and your success in the course, but that of everyone else who is participating too.
Again, it sounds so simple, but for me this weekend reinforced my ability to be more than my MS and to be more than my symptoms. The course days are really long: 10am - 10pm for 3 days, plus a Tuesday evening. However, I was so inspired by working as part of a group and being responsible for everyone, not just myself, that I really didn’t experience symptoms during the entire weekend. I wasn’t tired, I didn’t notice any hunger, or if I did, it wasn’t a reason to disengage with what we were doing as part of the course.
The results
They say that how you do the courses is how you do life and I realised that if I’d been able to focus and be engaged for that long on approximately 5 hours sleep each night and not give in to my symptoms, then I could do that in my daily life too. I could stop playing small.
That is not to say that I don’t listen to my body and give it what it needs (mainly sleep or meditation!), but it does mean that I don’t give in to every little twinge when it arises. This is possible because I am no longer scared of making those little twinges mean terrible and scary things. I also know that I can take action in spite of having MS symptoms, especially when I have a clear intention and mission in life that is more important than my own body of concerns.
Participating in the Landmark Forum and subsequent seminars is also why this blog exists. I came full circle in the grieving process and had reached “acceptance”, but I still wasn’t connected with the MS community. During the Advanced Course I created the possibility of being power, love and inspiration. So, I let go of all of my worries about my MS “not being bad enough to write about” and decided to just write about my experience.
My hope is that if even one person finds what I write useful in some way, then I will be happy, so please do let me know what you think about the blog in the comments!
Also, if you would like to find out more about the Landmark Forum, you can visit their website: https://www.landmarkworldwide.com or drop me an email using the contact form.
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