Holistically MS

Join my holistic journey with MS


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One Year of Walking

Well…I’ve just celebrated one year of walking. One year of being out of the wheelchair.

During the early months of the year I increased my exercise routine. You may find some of the following info interesting and hopefully useful:

I exercise daily for about 45mins first thing…with 1.4kg ankle weights on. This goes like this: stretches, yoga interspersed, lying down limb stretches (my take on lying down aerobics stretching, instead of swimming), upside down cycling, meditation (5 mins), jogging (5 mins on the spot), dumbbell weight (1.1kg*) exercises, stationary bike (2km full on). A dog walk for 1-2hrs in the daytime. Then 30 mins meditation in the afternoon.

In the mornings, after I’ve cooled down from my workout, I do some cognitive exercises recommended from a MS article; the Einstein Brain Trainer. At first I was concerned about thinking against the clock, however I’ve gradually improved and also learned of where my weaknesses lie and are improving. It’s a self competition where I also learn to accept blips from outside influences and how this affects my cognition.

My mindfulness course went well, despite some enormous stresses occurring at the time. This improved my meditations also. So I tweaked my meditation to going through each part of my body, whilst focussing on the breathing/counting. I was using an affirmation from George’s book “Let whatever is happening be okay” and sometimes say this in my mind – however sometimes that makes me look for an issue!

Last week I also saw the neurologist. I’m in a new area so needed to check-in with my new local team. The neuro went through the physical examination and I passed it all with flying colours. He was genuinely amazed at my nerve and muscle responses and when doing the muscle responses he was uber amazed…I grinned whilst saying that I do weights. Grins all round. He went on to say something along the lines of other doctors would be unlikely to tell that I’ve got MS. Can you imagine how mind blowing this all was for me? Remember that I’ve had MS for 28.5 years with a late diagnosis, then retracted for 8 yrs (whereby medics questioned my psychiatric ability) and then diagnosed again – so I’ve been through the mill. And now I’m not seeing a neuro unless there is a need!

Just remember…blah blah blah…we are all unique and have MS affecting us uniquely. However also remember to keep on the OMS, keep exercising, keep meditating, keep knowing that all improvements are improvements.¬†


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Jumping for Joy

* dumbell weight increased to 2kg on 28th November. After one week this increase in weights became easier. Within two weeks it gave me a great feeling.


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After the Tunnel

It’s apparently one hundred days since my last post. Was I informed of this century? No…I just decided to come on here and see if I feel like writing another blog. Or perhaps moving onwards with something else.

The last one hundred days…like MS they have been varied. Like the weather it has been a topical subject one day and not so, another. However…I have stuck at my Wahls Protocol. On May 3rd I started an AIP Leaky Gut diet…for three months. Auto Immune Protocol, by Dr Sarah Ballantyne…to try to improve on my Leaky Gut. My so-called virus this year ended up not being one. I discovered that my joint pains were in fact tendonitis triggered by nutritional deficiencies…caused by stress, infections and relapses. I also, recently, found out that my sore throat this year, exasperated by the aforementioned, is in fact GERD (chronic acid reflux). I then researched how to avoid taking the medicine prescribed and found out that most acid reflux is caused by the stomach having too little acid. Search it and you will see this: http://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ I highly recommend it. And what I thought was MS hug was in fact GERD. I may get MS hug sometimes however I now know the reason for food easing the pain. It makes sense. And more so…after removing acidic foods and being in agony, to reintroducing acidic foods…add cider vinegar, eating slower and less in the evening…my pains have cut right down. Hurrah!! Oh, how ten days can spin right around on it’s axis and make you feel that your body is in fact united once again. Incidentally that website material is educational for IBS, Paleo, low carb, sugar free etc…so when I found such a lengthy article which covers lots of my issues, my digestive -throat to toilet- challenges, I  became the student.

So…now my nutrition is starting to get back as a team inline with my body and I am already seeing the turn around; the united body. My exercise levels are back on the agenda. The mediation and yoga are daily and now joined with exercises. I’m also able to take my assistance dog out for wheelchair walks, with some actual walks through the countryside. Helping my mental health also.

So yes, I’m back. Back…and also far far forwards in holistically being healthier; holistically understanding my body and; holistically focussing on the best options which I feel are right for me. 

And so folks…here may endeth my blogs. Thank you for reading about my journey, I wish you great health and happiness.

…I’m off to do the rest of my life now!

  


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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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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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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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Warts and Rocks

I know…I know…my last blog was quite a while ago. It’s been on my mind to write however I’ve been trying to suss out if I can make my blog a positive experience for you guys to read. So I may just waffle to disguise my current situation. Oh…I’ve already blown my cover lol. Honesty and all that.

So what’s been happening with me? Let’s chuck some words out there to summarise my health: landslide, challenging, upsetting, frustrating… You get the picture. I’ve been in some very dark places psychologically. My cats manage to break the atmosphere sometimes. My partner is unbelievably supportive. I feel as though I’ve revisited some times that I thought had gathered dust.

My most frustrating and ironic feelings are that as a predominantly outdoor active and social person these characteristics have gone on vacation…or dumped me. Recently I realised that I feel I’ve been kidnapped or suffocated by MS. The smallest things rock my mood…good or bad. Yep depression seems to have been admitted by myself.

You know what I realised a while back? That I was thinking I had all the energy an able-bodied person has…and that even though I’m in a wheelchair I can still do sport and anything. So I tried this. I started eating loads and exercising. I then got worn out and as often happens when confined to bed I realised some shit: my levels of energy were low, food and weight increase were not eradicating my energy loss. Arse! Eventually I realised I have an illness affecting my whole nervous system…my whole body: mind, brain and body. My neurological communication to my muscles got more and more challenging…and following like a sheep, my emotions and attitude slid downhill like an avalanche. New symptoms crept in…putting the fear in my internal grasp on life. Medics here and there. Like a bad music festival, perhaps?! I like analogies so I trust you are still with me with these ones. Due to some, hopefully temporary, uncomfy environmental circumstances my stress levels have increased and ermmm…mix that altogether and watch me try to stay afloat in a huge ocean whilst hanging onto a rock.

I do have a teeny piece of hope left…however to be honest this strand of hope is fraying somewhat. Glimpses of light at the end of tunnels simply flicker whilst the tunnel seems to increase in length. Okay, so imagine you are climbing a hill…this is based on a true story as a child…and you wonder where the top of the hill is – you’re told its just over the next mound. The hill goes up and up. Every time you think you’ve conquered the hill and reached a plateau along comes another peak to climb. Sigh…

Well…that’s as best as I can write at the moment. Of course I’m trying to get through my tunnel; surf my wave; shine a light; reach the hilltop…however I’m feeling pretty fragile. Warts and all…there you go!

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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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