Holistically MS

Join my holistic journey with MS


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Back On Track

Hi everyone…well I’ve partly been avoiding blogging fully for the last few months as I had a flare-up of MS. This is primarily due to overdoing activities without needed adjustment and rest. A lot of cognition was needed and thus depleted. My trip to Wales left me exhausted however I was engulfed in the new life with an assistance dog and all that this involves.

I’m pleased to report that after my symptoms increasing, I reconnected with yoga, meditation and begun some mindfulness exercises. Along with increases my intake of valuable Wahls Protocol foods I was then able to work better with my cognition, meanwhile my new assistance dog was working better with me. So all in all this led to good things and the ability to get my physical fitness heading towards a healthier path.

So yes, I am getting back on track. A valuable lesson has been learnt that although I can minimise the MS within me, it is still there backstage. My focuses now are to recover and rebuild from the previous few months of challenging work. I’m so delighted that I’ve turned my health back around…and immensely relieved. I shall soon be visiting my neurologist, after avoiding the medics for a couple years.

The recent mindfulness introduction and awareness had a really profound and insightful effect on my outlook of who I am as a person with a disability. I read a sentence that woke me up…real me vs ideal me. Quite simple, yet so revealing. I realised that in my mind my disability was stopping me from being the ideal me. However to my amazement I learnt that my vision of the ideal me was so far fetched and imaginary…very likely to be unachievable even if I was able bodied. The power of the mind! The other exercise that hit me with immense relief and happiness was to discover all the things I can do now as a disabled person that I was unable to do before. The little things like wear the clothes I want, listen to music or whatever I chose, be home to receive phone calls or deliveries, spend time with my animals, explore hobbies…the list went on. My whole inner self belief turned such a corner that I felt I was getting to know and show myself. I felt alive and lit up like a sunset or log fire…roaring with energy and new self passion.

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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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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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Silver Linings

It’s so amazing sharing my journey of life with others. The fascination of my recovery is absorbed with open eyes and sometimes open mouthed amazement.

However underneath this silver lining is a challenge with the taste buds; a challenge of the convenience and a challenge of social merging. My partner strives on through with her support for this new lifestyle especially by currently doing some of the diet with me. The protocol logistics are totally satisfying, understanding and suitable. I enjoy the training programme, the lifestyle requirements, the scientific reasons, the knowledge of the rebuild and the results are totally amazing of course. However the food aspect is what sometimes becomes a trial. Yes sure, there are lots of Paleo recipes with totally yummy foods and treats, however adding the low-FODMAP aspect in to the mix often takes the delights out again. I try to believe that the low-FODMAP aspect of my food intake is indeed temporary. For however long I need to endure this tougher level it is still somewhat frustrating for me. I have a sweet tooth and the Wahls Paleo diet as a standalone diet works well fulfilling me with these needs. I have so enjoyed the meals and treats baked for me by loving and generous friends and family.

My successful way to ease my IBS is to cook the permitted low-FODMAP berries. It’s this simple! I eat the low and medium fodmap foods unless I know I have a digestive reaction to anything. After decades of the condition I now have it under control…albeit via a limited diet with specific processes. However this health boost is truly fantastic to live with whilst knowing that my gut is indeed healing.

As autumn sets upon us I find myself focusing more on food when I get cold. Due to lots of weight loss I imagine this winter to be an interesting new element to circumnavigate. Last winter, as my MS was rapidly declining, I was unable to acknowledge the cold until I was extremely cold. So for safety reasons the heating was left on most of the time. The winter before that I seem to recall I just sat in the cold. So…the lessons have been learnt and this winter I feel fortunate enough to be able to at least exercise to keep warm. I’m definitely needing to purchase more clothes. I saw some discounted double layered walking trousers in a well known outdoor shop recently however thought I’d get too warm in them. Hmmm…on second thoughts yes please!

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After a short amount of frustration with the limitations, I try to focus and recall the amazing distance that my health has come. I find it so mind baffling…in such a movie-style format. No matter how many chocolate treats and savoury cravings and delights I desire I always choose to refocus, regroup and metaphorically slap myself, in order to wade through the world of the majority…and find my world of quality; my world of minority meals; my world of life enhancement and my new world that welcomes me with open arms and a huge energitic smile.

I feel so so fortunate to have the opportunity to rebuild, to restart and to reconnect with my life. The journey worth enduring. The life worth exploring. Our health worthy of so much.


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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…