Holistically MS

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Tails Of The Unknown

To say that I’ve been busy, seems quite an understatement, to me. I’ve had some fun and some challenges.


Soon after my last blog post I received the all important and long awaited call from Dogs For The Disabled…I had been matched to a dog! Placing my mind in an orbit of the earth I tried to gather my composure and focus on what was happening. I was about to head to Wales, independently by train, to spend time with most of my family. This was a massive challenge for me and I was also planning to go without a wheelchair; instead with a rollator. I had a fantastic and very busy time. I managed some walks along the coast which I had been focussing on for months, so I knew that my muscles themselves were up to it…the rest of my body’s ability was, as always, unknown. I had many sociable occasions…which is something quite rare for me. I also gave a public talk on my health recovery and the Wahls Protocol. Needless to say when I got home I felt exhausted. I had three days at home and then was to head off to my training – staying at a hotel. So many challenges were lying ahead of me…to think on my own, study and learn, adjust to winter, dietary challenges in a hotel, a dog, being alone, meeting others etc. I was definitely tested and I was also rewarded.

Fast forward a few weeks and we are now all settling in at home. The training is settling and becoming useful. A little inflammation has occurred due to the high level of activity – mental and physical – in November, however I believe that I am now managing this with more ease. My physical state is being tested with the need for going out and straining my shoulders from wheeling around…so I am having to look into long-term sustainable options. In the meantime my partner is doing a fantastic job in walking Uma…that’s her name…and they both enjoy this. I’m slightly battling mental feelings with needing a wheelchair and having to relieve my shoulders yet keep on going out. Winter is playing it’s part on my views of going outdoors…however I am starting to realise my lack of need to go to places. A need for well-being yes, however a need for other requirements leaves me with a question mark. I really need to sort out my mobility requirements urgently though. My powerchair is now out of use as my cognition is too challenged in using the joystick…it was getting dangerous. So power assisted wheels/self propelling chair seems the best way forwards…costly and timely however that’s disability equipment.


So, let me tell you about Uma. It’s her 2 year birthday today. She is a gorgeous Golden Retriever with a very placid and helpful nature. We’ve both bonded well and are gradually learning the essentials for daily living and supporting one another. I’ve discovered the enormity of things to learn; about dogs and assistance dogs. The cats and Uma are beginning to get closer which has been progressing since the early stages of Uma coming home. Uma has settled in to her home ever so well. We have had weekly training sessions with our instructor…going out to local amenities and learning the requirements. Soon we are to do our qualification test, of which I will be relieved to have completed. Uma is gathering a collection of toys and enjoying playing out in our garden…which I enjoy too.

I am starting to have time to think and unwind, with this week being the turning point – partly due to Uma getting walks from my partner and partly due to the training sessions becoming real life task work. This week has been far better for me especially in that I’ve felt I’ve been able to catch up with myself and start to do the things I enjoy and the things that I was doing pre-Uma. This helps me feel secure and to touch base. We both went to my voluntary place of work this week for a meeting and everyone was absolutely fantastic in ignoring Uma…so that Uma can do her job with ease and focus. I wish people out in the streets were this helpful in leaving Uma alone…however I am to become more assertive in telling people to leave her alone. The dangers of being pulled out of my chair; having Uma looking at that member of the public or being distracted in any which way. So please let people and assistance dogs get on with their day – admire from a distance and be helpful whilst respectful. Thank you.

Well, Uma has now got up to gaze out the window. She already has many great benefits to me and it is such an honour to have an assistance dog, finally. I’m very very glad that we are over the hardest and most challenging part of our initial training though. There will always be new situations for me to process ahead of time; lessons to learn; training to apply and enjoyment to receive.

We wish you all a happy festive season.


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The Runaway Train

My MS is really starting to feel like a runaway train…things becoming more challenging and more things needing to be sorted out. It’s a balance of pros and cons whilst being reminded of what I feel is my old life…or previous life. I use to love being outdoors, walking or cycling and most things in the outdoor air. As I spend my waking hours sitting down, with a minority of time standing to stretch I wonder whose case I am living in. The desktop photos on our laptop are of our time visiting Dorset and mainly photos taken whilst walking along the coastal path. The pictures are so lovely and are set onto random. I miss it all massively. I just had a guilty feeling or rather a thought that I ‘should’ feel good that I actually managed those activities whilst my MS was building – whilst the train was just starting to gather momentum. I found these walks tiring however I paced myself with food and breaks sitting down. With cycling I use to find I let off steam and felt the freedom whilst exploring and relieving energy. The good old days that in all honesty were a bit challenging…especially as the medics were denying my health after my diagnosis was retracted. Those days were certainly hard for me however in good old hindsight at least the runaway train was going slowly.

And now…the driver has done a runner and I’m left to just watch the slow car crash or runaway train. Take your pick with analogies here. I am! So here’s another one for me to explain what it feels like being in a different body or on a different planet…I’m in someone else’s case or shell. There’s little space to get comfy and someone else is controlling the journey. Big sigh.

It’s very safe to say that I am sincerely finding my life increasingly challenging to fathom and lead. This runaway train has come across obstacles that have beaten it for a while however the train in the end has won and continued on its way down the hill.

Grove RetreatSo what is it that I can do in these low moments? I’ve asked for help. I’ve eventually accepted that others can help me and that this is totally okay. If I was to tell myself to accept the motions and accept that at the moment there is no cure for MS. I am happy to also tell myself that there can still be hope for a fuller life and hope for a cure at some point. And what shall I tell myself about having to live a totally different and foreign lifestyle? Hmmmm…just make it the best you can and try to have some fun; be with people when you are up to it and when others are available; see if you can find new ways to entertain and give satisfaction within a new journey – perhaps new hidden things will appear and channel your life towards new arenas. Find some benefits of having a disease which immobilises and captivates so much of your body.

I’ve yet to feel able to take this advice…however maybe just by coming up with it and typing it, this may plant a seed. If you see someone on a runaway train…run with them and listen to them, until they are feeling safe.

Bob Marley said “Don’t worry about a thing, every little thing’s gonna be alright”
If you say so Bob.