Holistically MS

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One Year of Walking

Well…I’ve just celebrated one year of walking. One year of being out of the wheelchair.

During the early months of the year I increased my exercise routine. You may find some of the following info interesting and hopefully useful:

I exercise daily for about 45mins first thing…with 1.4kg ankle weights on. This goes like this: stretches, yoga interspersed, lying down limb stretches (my take on lying down aerobics stretching, instead of swimming), upside down cycling, meditation (5 mins), jogging (5 mins on the spot), dumbbell weight (1.1kg*) exercises, stationary bike (2km full on). A dog walk for 1-2hrs in the daytime. Then 30 mins meditation in the afternoon.

In the mornings, after I’ve cooled down from my workout, I do some cognitive exercises recommended from a MS article; the Einstein Brain Trainer. At first I was concerned about thinking against the clock, however I’ve gradually improved and also learned of where my weaknesses lie and are improving. It’s a self competition where I also learn to accept blips from outside influences and how this affects my cognition.

My mindfulness course went well, despite some enormous stresses occurring at the time. This improved my meditations also. So I tweaked my meditation to going through each part of my body, whilst focussing on the breathing/counting. I was using an affirmation from George’s book “Let whatever is happening be okay” and sometimes say this in my mind – however sometimes that makes me look for an issue!

Last week I also saw the neurologist. I’m in a new area so needed to check-in with my new local team. The neuro went through the physical examination and I passed it all with flying colours. He was genuinely amazed at my nerve and muscle responses and when doing the muscle responses he was uber amazed…I grinned whilst saying that I do weights. Grins all round. He went on to say something along the lines of other doctors would be unlikely to tell that I’ve got MS. Can you imagine how mind blowing this all was for me? Remember that I’ve had MS for 28.5 years with a late diagnosis, then retracted for 8 yrs (whereby medics questioned my psychiatric ability) and then diagnosed again – so I’ve been through the mill. And now I’m not seeing a neuro unless there is a need!

Just remember…blah blah blah…we are all unique and have MS affecting us uniquely. However also remember to keep on the OMS, keep exercising, keep meditating, keep knowing that all improvements are improvements. 


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Jumping for Joy

* dumbell weight increased to 2kg on 28th November. After one week this increase in weights became easier. Within two weeks it gave me a great feeling.

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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.

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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.

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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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Total Rebuild

I’ve been wondering, for a while now, what to entitle this blog. I want to summarise myself being rebuilt, reprogrammed, rediscovered. Perhaps like a new town being created brick by brick.

So…I’ve been busy with the training programme which has had to change equipment due to my improved health. Yes the wheelchair accessible medical cycle machine kept needing to cool down so I knew it was time to change. Albeit with a proud smile that my fitness and strength is improving more and more. We now have a treadmill which provides me with safe side bars for learning how to walk. My pelvis has started to adjust to this new way of moving, along with my legs building up their muscles for the weight bearing stuff. I also have started cycling out in the real world…quiet lanes and off road. The latter was taking my MS symptoms out of their comfort zone, along with my sensory processing too. However this was fun and really began to help me become distracted from fear of a new unknown life. Yep…as weird as this may sound to some, to others it may make sense. I’ve spent nearly all of my life with medical issues and am fortunate for this change…however long it will last. I still use my wheelchair for going out – for safety, distance and whilst having to process all sorts. I recently purchased a rollator, after tons of research for aesthetic and practical reasons. So far I’ve used it twice.

The food situation has been a pain in the arse for me and my IBS has been challenged so much due to many new food alternatives. My IBS had been increasing in symptoms over the years and then it improved when I went on the Wahls Protocol. Then something was consumed which knocked my digestive system…my ultra sensitive gut started a ropey journey. I tried a low-FODMAP diet for the recommended six weeks which helped. Although my taste buds and enjoyment for food had a different view. And now…I’m back on the extra diet and this time eliminating almond milk too. I do have peaks and troughs with attitude to tolerating the absent tastes…I’m human. Anyways…today I’m fine so we’ll move on now!

My weight loss has been an interesting journey…a subject of which I have not really thought about until spring time this year when I began to change shape. With the results of double diet, I’m frequently in the charity shops rebuilding a wardrobe in a smaller size. It’s so weird looking in the mirror and learning to recognise my [new] self, however it is a lovely bonus on top of the long list of wonderful changes.

Wow…life is becoming life…a new one that feels so so foreign to me –  overwhelming and also hugely fantastic! I’ve just started volunteering out in the real world, away from virtual work. It’s great. I feel like I am living in a surreal world. Perhaps a movie can be made…any takers?!!

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I love this photo and it says so much about how I feel…as I start to socialise, feel free, awaken and feel ready to enjoy this new life which is the best present to ever ever have.


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The Highway Merger

Yesterday I walked through a supermarket. It was amazing on so many levels. I had a stick and placed it in the trolley and leant on the trolley. As I was going down the aisles I had to process movement of myself and others whilst looking for food items, meanwhile adjust to noises and food at a different height to normal, for me. After many many years it was a really new experience that people just wandered passed me – I blended in. Gone were the wide berths; gone were the apologies; gone were the looks. My aim was accomplished however my processing ability will take some time to adjusting to steering and avoiding people whilst relying on my legs. The venture sure was an amazing feeling. The extra add-on bonus of standing is that I feel tall. I am in reality far from it, however it’s all relative. The food was different at standing level too…less brightly coloured items for attracting children.

Today I went to view a mobility scooter…after much research. I test drove it. I was the first to use it even though the owners had purchased it a year ago for an elderly relative. Anyways, as agreed we went away to discuss it and how I felt. I felt weird – although the freedom it will give me to steer to a shop and walk inside – it felt like a reliance on a motor (I use to rely on my powerchair); a dependence and the concept of sitting there steering again was unsettling for me. These days I have enough energy to power myself in the manual wheelchair for quite some distance; I have enough energy to do my training programme every weekday; I have enough energy to walk about where there is a small amount of processing required. So I realised that I wish to skip the step of a powered scooter. I’m off to research for an alternative method to get around town etc. It may be to lock up the wheelchair in town (probably too much of a wierd concept for others); try a handcycle; try a small-wheeled bicycle or a foldup one for the car; or a go-cart. I wonder if there is such a device as a manual mobility scooter aka adult size kids pedal car!

Recently I moved up a level with confidence and cognition. I was spending time with friends travelling on buses and trains; in cities and in their two storey house. I was thinking for myself; speaking up for myself; observing busy environments and becoming a part of them. I then embarked on some solo town and city trips. Learning to communicate with strangers; learning to find my way; learning to be independent.

Happy times…finding my self.

Recently I looked through the Do It Volunteering Website to see what voluntary work is available either virtually or in a local working environment. Over time my confidence and trust in my new found health will improve. However for now I feel comfier aiming for some virtual/home volunteering. On top of this, next month I am returning to the voluntary centre where I use to volunteer many years ago. I’m happy going there as they know my whole story, my ability and I’m part of the team…so I can be flexible, dependent on how I feel.

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Transitioning…in whichever way…takes time, acceptance and most of all patience. Also requiring self allowance and flexibility.

A counsellor I saw when I was misinformed about my diagnosis use to say to me: Choice Is Control. This has helped me through many challenges. I chose to try The Wahls Protocol as a tool to try to stand up, to be out of bed, to ease my digestion and to think with a bit of clarity. I got a whole lot more…


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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.