Holistically MS

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Into the Forest

I feel the need to empty my mind…I’ve probably said that a few times on here. My feelings; my centre of mental gravity; and my location of focus are all rather off balance awaiting to be cultivated and tamed. Or perhaps I need to be set free to roam first…and then be tamed. Well, anyways I’m going to see where this mind-emptying blog post takes me. Take a seat and step inside my mind and life…you’ll be allowed out again soon!

I’m delighted to have recently discovered that my MS is very stationary, and has been since my last MRI in 2010. When I say my MS, I mean the overall progression. This is still far from the day-to-day anything-goes lifestyle I lead through living with Multiple Sclerosis. During my friendly and helpful consultation I was also informed that a number of my physical MS-like symptoms are in fact likely to be from anxiety. Some will be from the cognitive damage I have however some are fixable! This is great…and scarey also. It was an eye opener into realising that a lot of my stress is actually anxiety. I had to accept that my mental health was seriously encroaching on my physical health. So this has led me to varying thoughts, feelings and uplifted my security – of what was me trapped in a constant life of familiar stresses and denials – to an open can of anxious worms. I’ve tried to see the positives in this news, whilst start that ball rolling into getting some treatment. 

I took a trip to the GP…with my list of administrative requests. I got my referral form for some talk therapy. I have since discovered that my neck is fine according to the scans so I am left with rather conflicting views as to the cause of neuro flare-ups from me tilting my head and neck backwards…mentioned on posts in 2013. Whilst at the GP I took the opportunity to request a Rheumatology letter I had not seen nor been sent. So I now have a copy and it explains the situation with my knees, shoulders and perhaps my neck. Early onset of Osteo Arthritis with no follow up care needed. Arh, so this explains how come I heard nothing afterwards, in 2013. So…I find confirmation that my knee challenges are indeed OA and that my MS started a few years later. 

If you are still awake…we shall move away from the historical timeline that is my health.

So…although perhaps a little off track from MS, which itself entails daily anxieties, I am now entering a learning phase as to who I really am, as an adult. I’ve discovered some helpful books which are aiding me to separate from the adolescent years to the adult years. I’m looking forward to throwing off some of my baggage and fInding that my MS is a lighter load than I thought. When I compare health challenges to MS, and the permanence of it, I feel positive about the chances of recovery from these sidekicks I tow along. I feel somewhat overwhelmed, scared, bewildered, sad…and many emotions as I start to leave my safe and familiar perch to fly into the forest of unknown newness. However…I really do see this to be the best way forwards. Opportunities, chances, lessons and new directions.

Life with Uma, my assistance dog, is levelling out (thank goodness). The bond and challenges are aligning healthily. Last week we went on the evening bus three times…so to suss out the order of embarking and disembarking; learning to adjust to given hurdles in a wheelchair; and for Uma to get bus practice to build on her confidence. We’re a bit of a pair though…helping one another through the anxiety of people and buses. There is security in knowing that my partner collects us the other end, after her day of work. We did it! By the third trip Uma realised that it’s more comfy to lie down. The bus is quite empty which aids us with our building blocks. Each trip was a different set up on the bus with layout, people, stops and drivers. We probably need a few more practices on this quieter bus for me to make sure Uma goes on and off the bus in the order which is most calming for her…and for me to build on coping with people watching. Yes, there’s a lot to having an assistance dog and to bing a wheelchair user – especially using public transport. And wow, as I stroke her head and ears my mind is so distracted from people, anxiety and hurdles. Animals are so powerful.

Here she is helping me at the bus stop!


This photo makes me smile so much…she had managed to pick up my bus pass just in time for the bus arrival.  Thanks Uma for helping me.


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For The Greater Freedom

It’s just dawned on me that I’m actually limiting my independent travel. I’ve realised that independent trips out have been too controlled by my choice of equipment to hand. Recently I’ve felt so happy with being able to walk a bit, and thus proud of this ability, that I’ve been using my rollator as much as possible. However on reflection of this when travelling solo I now realise that by using the rollator I’m actually reducing my freedom. I can cover a much further distance in the wheelchair. And so I think that now the novelty and perhaps the self-proving stage has passed, I can get on with using what works best in what situation. It’s quite a minefield to process…so I’m currently awake in the middle of the night needing to clarify things and create clear waters.

When travelling on my own and relying on public transport the wheelchair enables me to wander a few miles and also catch the commercial bus – which in turn means I can be spontaneous with when and where I go. It means that I can get to a bus stop and feel one of the masses…and preferably move to a regular seat in order to face forwards. When being taken out in the car and accompanied, the rollator provides the ideal apparatus for walking with someone, having an eye level experience and with easier access to buildings; blending in to the crowd and having the safety of someone being able to move the car to pick me up.

Is this feeling like a step backwards? Perhaps so however if I’m to maximise my benefits in life then I need to focus on looking at the situation from the aspect of greater freedom and independence – and this means that I can go out more. I’ve actually realised that since using the rollator and travelling independently I’ve only gone out three times (by community bus) – twice to go directly to an office to volunteer and the other time was yesterday to get to my dentist appointment. With my brain processing all sort of activities in town and preparing for an appointment I found this experience to have been slightly limiting. Deep down I knew that being in the wheelchair will have improved my trip. Yes, sure, with the rollator I was standing up and able to take my time however the wheelchair does provide me with a more comfortable experience overall. Which in turn gives me more freedom, more independence, greater distances…and therefore more accessibility.

It seems that there is always more to learn about having such a variable disease. There is a lot of safety to take on board in order to keep my health at optimum levels. Changes can occur at almost any moment – reminding me that life is always changing, whatever our situations and capabilities, and whatever our choices. My advice to myself is to accept the modes of mobility transport with flexibility and focus on the objective. So as I process this I hope to see the wider opportunities grow.

shoe wheelI’m still doing well on the Wahls Protocol; my training programme continues to work for me and my muscles gaining strength; my relaxation techniques being just that; my cooking skills increasing as I experiment with baking options and gain confidence. My overall happiness is glowing and growing. Also as a couple, our lives are changing so much – for the better. We went out cycling at the weekend, and with the exception of the biggest hill, I realised that I was grinning for the whole trip…the enormity of happiness was far beyond my expectations. I’m very much enjoying sharing my journey with people – sharing this good news is such an energy magnet for everyone. Thank you for being part of my happiness and success.