Holistically MS

Join my holistic journey with MS


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Mountain Views

There are so many different and surprising views as you ascend and descend a mountain. So many things you can see – especially when you look for them. The journey can be the main attraction. By focusing on what is around you, whilst you climb, you will see so many delights. Little things become clearer. You may decide to have a break at a certain view…a view which has just crossed your path. Unplanned. Unexpected. Sometimes you may feel alone and other times surrounded by noise or people. Notice this moment…this moment filling your senses.

We all know the phrase “seeing is believing”, so how about we turn things around? How about “believing is seeing”? If you look for things you will notice them. When you look for positive moments you realise they are right here. When you look for what you have achieved, accomplished and reached, you realise there are plenty.

Mountain View

So the journey up and down a mountain, however far you reach, is like having MS. There are bumpy paths, grassy paths, well trodden paths and also there are paths there to be discovered – yet to be paths. At certain points there may be obstacles to negotiate around, ones which become challenges or that steer you in a different direction. Some views will seem familiar and some views repetitive. Whilst other views will seem so dynamic, amazing and enlightening…if you look for them. Add to the mix the elements of our weather, others around you, decisions at each option and how you wish to feel. If you look behind you or in front of you, you see where you are in relation to many things in your mind and many things in your vision – then you can move forwards. This is what helps us in our off-mountain life. The here and now up a mountain is the here and now in your every day lifestyle. Choosing what you see; what you wish to see and what you feel.

The mountain is calling…so come and join me. Let’s go check out the views.


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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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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.

 


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Half & Six

I’ve been adjusting well to my light manual wheelchair. It’s easier to move than my powerchair when I’m in small spaces and easier on my cognitive skills. However I have been doing some manual wheeling over distances to keep my arm muscles in trim…although this impacts upon my arthritis.

Last weekend I tried sit-on-top kayaking. It was such an awesome experience…although for me my arthritis has made me do a uturn on it. However if you have a bit of upper body strength and like water – then try it. Sit-on-top kayaking is easier to transfer in and out of. It’s so natural to go from maneuvering yourself with your arms in a wheelchair to gliding through the water using your arms to hold a paddle. And if you love water like I do or just want to get your upper body stronger then I hugely recommend trying it out. I went to an outdoor centre and tried it in a calm lake…they were really helpful and accommodating. It was lush gliding through the water. What a gorgeous feeling. I had tried this 25 years ago for a few hours and so last weekend was pretty much a new experience. The wetsuit was very weird at first and then I adjusted.

That’s the positive news. Although I have a bit more…last week I met my MS rehab team. They seem to be supportive and helpful. How reassuring. It’s the nhs! Which is a shocker for me and compared to past experiences with the health service here in the UK. However…they are doing lots of tests to see what’s happening and how they can help. Meanwhile I managed to get to an opticians and my MS is creeping in…although some glasses will ease some of my eyesight challenges a bit. So I spent what seemed like an age choosing some glasses. I chose the same frames for both my near and far glasses as they felt so comfy – and I like the look too. I’m hopeful that I will get a bit of clarity with them and perhaps they may ease my eyes a little.

We are in the process of selling our two storey house so that we can move into a bungalow and try before we buy. I’m looking forward to this as we will move somewhere with good buses and some amenities – all assisting me in having some independence.

So there are some positive things which are occuring and this encourages me…meanwhile I’m missing my body working with my mind and missing my mind working with my limited body. You know…it’s a challenge and at the moment this is really starting to piss me off and eat away at me. I’m on the lookout for finding a way to exercise comfortably and enjoyably with my arthritis and MS. I recently tried a hand cycle however it was too big and the ‘pedals’ were too high…so at the Mobility Roadshow I aim to try a hand cycle as an attachment to my wheelchair (if they have this option to try). It may work if the ‘pedals’ are low enough for my shoulders to be comfy. I love being outdoors and so feel that it’s important to be in an environment in which I like. Swimming is a love of mine (outdoors) however my neck thinks otherwise. It’s a wonderful exercise though…as I’m sure everyone knows. I try to do stretching exercises whilst sitting down and I’ve been given a lycra band for building up the muscles between my shoulder blades…as this eases my strained muscles on my shoulders. Wheelchairing obviously uses a lot of upper body muscle…so I try to mix up the manual and powerchair.

Recently had my assessment for an assistant dog…it went well and I had a go with a lovely dog. She was great and it was quite an amazing experience trying out some commands with her. Awwww lovely.

Well…I hope that this blog has been ok to read. I needed to empty my mind and I was also aware that it was time to update my page. I do wish that kayaking was an option for me…as it will be lush to exercise at my own speed, be independent, glide through water…and watch wildlife. My trial last weekend was so great and I hope that this feeling stays with me…I felt alive!

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