Holistically MS

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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.


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Gentle Journeys

Hey there everyone…

It has been quite some time since my last blog. I’ve been aware of this over the last couple of weeks. In some respects I’ve been busy…and in others I’ve been watching the world.

So…my MS improved enough for me to plan a solo trip, by coach, to see friends and some family. This was a big thing for my confidence to embark upon however it helped that I felt my health was up to this fun challenge. My sanity needed to get out and do stuff. So I bought a suitcase on wheels and some good walking sticks…oh and a three-in-one jacket. All to make things easier and for me to blend in somewhat. I had a great time and although I had to abort my trip a day early due to health, I am incredibly proud and chuffed with the whole trip. I strained my neck which led to MS symptoms flaring up. I spent the next week in bed and in communication with the MS nurses. It was seeming like I had relapsed. I had some quality time resting in bed, making sure I had some laughter therapy and reflecting on my recent adventures. This week I went to see an MS doctor whom assessed me with regards to steroids if it was a relapse. We were delighted to hear that the steroids will not help and the side effects may make me worse – as I am not experiencing a relapse. Woohoo. It was explained that due to my slightly weak and arthritic neck – when I was away and looking at an amazing ceiling and weird new symptoms appeared – my MS symptoms had only been exasperated. I was informed that my MS is still as it was before and that over the next few weeks things will ease…and they are showing these signs. Obviously my relaxation from this news had quite an effect on my neck and shoulder muscles. The effects of worry of course just add to MS symptoms too.

Oh incidentally whilst I was in bed I was going through loads of thoughts about steroids and what it will mean to me. I had an NVC (Non-Violent Communication) session with my sister Sarah to clarify my needs and subsequently my concerns with what steroids and other MS drugs mean to me. I realised that I was looking for hope and expecting that the drugs will be the miracle management programme. My final wake up call was when I read that steroids do not effect the results from the relapse. I realised that taking steroids will not effect my biggest fear…a ticking time bomb and adding pressure upon myself to make the most of my life whilst I’m able to. My NVC guidance was also for me to accept indecision as being an okay emotion; to realise that this is all new and that it is part of self discovery; to learn to be gentle on myself.

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To go easy on yourself has to be such a loving gift which you can freely give to yourself, when you choose to.
Our life is about discovery and happiness.
Let’s enjoy our unique journey.


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Every Day Is A New Day

Happy New Year!

Well…I seem to be in a remission at the moment which is great. Well, it will be greater when my cold has passed by. I managed to avoid two colds over the new year celebrations however after going to the doctor’s surgery I must have picked up some germs from the very empty waiting room. I went to see the doctor for a medical assessment for an assistant dog…so that all went well. However I found out a new diagnosis, via a letter from when I went to see a Rheumatologist in the autumn. So some of what I write may be about my Osteoarthritis (OA). As this is an holistic blog about MS, I shall mainly focus on the MS side of my health of course. So…I’m doing lots of resting during this cold, which is challenging considering that my MS is treating me well. My OA has been so challenging this winter so I am learning to tune into my body as much as I can.

After getting the OA diagnosis last week it took a while to register in my mind that my future is going to be even more challenging…especially as heat helps my joints and irritates my nerves.

So…here I am resting and thinking that once this cold has shifted then I really need and want to make the most of my remission. Of course! So I’m thinking of doing a trip or two by coach to go and visit friends and family. That will be great if I can keep feeling this confident about going on public transport for hours…on my own. Last week I officially started my voluntary job…which was almost surreal. As it’s with the people I use to volunteer with, four years previous, I felt quite comfy with starting back there. There have been people that have left and others whom have begun. I use to do design work and was also an advisor. I have had to shelve those two tasks…the latter due to needing flexibility for my health. So I offered to start with an easy task and was given envelope stuffing. This had a few levels to it and involved folding the letter so that the address fitted in the envelope window – somehow the printer had them appear at different heights on the letter so this was a tad slow. Then adding some other bits and bobs into the envelopes and glueing them closed. So I managed my two hours. Incidentally it took me just over two hours to get there by bus so that was quite a challenge in itself. After my shift we discussed how it went and decided that a mix of tasks will be preferred by myself. On one hand it was very mundane and on the other I had to keep remembering an efficient system. Overall it felt good and was enjoyable being out and amongst others. On the flip side I realised that my level of work is at a very different level to my previous remission…however acceptance seems to be the key.

In order to earn a living I will need a very flexible job. Self employed and solo work seems to be the easiest regarding flexibility. However perhaps I can mix it up a bit during my remissions and meet people a bit more. I’m thinking about doing or being a 2D artist. I’ve been creating 3D things on and off for years however I believe that 2D will be easier on my hands and brain processing. We shall see if this goes anywhere. I will like to be able to earn enough to pay for my food supplements, of which there are many. That seems a relatively healthy expectation upon myself…so I shall see what I can do!

The other realisation that I’ve had in the last week is that although many people with MS are able bodied and that many people with OA are able bodied – combine them and add Sensory Processing Disorder (which fortunately is still improving daily) – and you’ve got quite a challenging future with health. My life has suddenly become very real and my future even more unknown. What fathoms me and tests me about having MS is that I feel that I need to be prepared at all times. I found being a girl guide dull! Being prepared for all eventualities uses energy and makes me concerned for things in the future. I find that I’m restless for wanting to do things as soon as I am up to it. A remission, to me, is an opportunity to feel a bit better and to be able to blend in with society a bit. However the grey cloud can shade the sun at any time…so I really want to make the most of the time I have. This is a very weird thing for loved ones whom have a far more consistent lifestyle.

Yes, this varied disease makes you try to live within each day…I trust that one day I shall adjust to this concept. Perhaps over time I shall be able to adjust with more ease. I can think of many ways to advise people on this subject…however the bottom line is how you accept your life. I often find my life challenging however my one key desire is to allow myself the lifestyle which I need – one that can work with my health – and to accept that it is okay to be at home or out having fun. It’s called letting go of guilt and welcoming what we are each able to do, feel and be.

Life is a journey…jump on the next train and enjoy your surroundings.

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