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.

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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 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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Okay

Just a little quick blog posting.

I’m doing okay. My fatigue is riding the waves quite tiringly however I’m learning to adjust.

I got my new wheelchair sorted…and after a hiccup with it I am now rolling loads further. In fact I’m trying to adjust to the roll taking me further and as I progress with this adjustment I’ll save some energy. The wheels have a camber and so this takes some adjusting as the bottom of the wheels are further out than where my hands are – great for my hands though. As I have rubber grips on the handrims fortunately this is all that hits the doorways. I’m getting there though. I went out for a trip in it a fair while ago now and overdid the distance… It’s so comfy for my body though.

Dog shit…oh my god – that takes so much energy to look out for and then remove from wheels and gloves. Gross.

Well…we head to Christmas now as my birthday cards are down. Yep…now I’m ready, others are allowed to talk about it haha.

Soooo…happy festivities folks
Ciao for now


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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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A quick word or two…

It’s been a while. I’ve got very little to say. I’m in my new nhs light wheelchair which eases my life loads. So although my legs are challenged with coordination and arthritis stuff, I’m far happier and more energetic due to sitting in the chair. This new chair is light and I’m building on my arms.

I have physio now so this is helpful. And my GP called me in a while back to ask me how they can help – wow, fancy that! So I’m booked in to see a team about rehab/all round support and help. Fab!

I wish places were more wheelchair accessible – otherwise I’m happy with things. I think it has helped accepting the situ; finding it easier wheeling around; light low backed chair.

I’m nearing the last hurdle for getting an assistant dog…so exciting.

That’s my update folks. Thanks for tuning in

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