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, keeping 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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Forwarding Motions

My sporadic blog writing, these days, is only a reflection on how I’m travelling through my medical world.

Yesterday was World MS Day…I only realised this towards the end of the day. I see this as a good step forward in that my MS is starting to become my sidecar.

Recently I celebrated six consecutive months without the use of a wheelchair. I took myself off of the state benefit too, which was a huge relief for me. I still have other symptoms (especially hidden ones) to contend with however lots of them have really improved…thanks to the OMS Programme.

I feel that my improvements are brilliant. I am still being alerted to the blips, through my spinal cord and brain. The other week I had recovered from two rounds of colds…which took over a month to dispel. So the first week of feeling human again I seemingly mismanaged my ability. I did so much and felt so great…until it seemed to have become too much. Also when I am sociable it then creates aftermath symptoms…so this needs to be more carefully monitored too.

Today I’m with cerebellum and occipital lobe pains, and some spinal cord ones too. Yesterday I had a mental health session which really hit home…then followed by a few weird symptoms of nausea and low blood sugar levels…leading to this morning with what I thought was a weird neck pain. So we went out for a daily walk however today was to be the cognitive workout route for me. And yes…it was too challenging and we aborted it part way through. The aforementioned parts of my brain were knocking me off of my balance and confusing my brain/eye coordination and translations.

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However…thus are the learning curves and the moving goal posts of MS. Earlier in the week I was doing some good hill walks which were so lovely for me and helped my cognition to breathe and feel free among a reduced workout. This is what I often try to do as I find these walks so relaxing and refuelling.

My MS feels amazing and I feel ever so fortunate to have it be gentle with me. I am also learning so much about quality of life and how it has altered me…into what I feel is a more wholesome present person. I’ve embarked on a mindfulness course which started this week and so I am learning to focus on being in the present moment…this being our own best present to oneself.

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Speedy Short Update

Well…I’m active with life these days! Better than I have been for years.

I came off of the Wahls Programme on 1st October 2015 and switched to Prof Jelinek’s Overcoming MS Programme. My reason for the change was due to having three relapses during 2015 on the Wahls Programme, with the last relapse being too full on for me.

I read the science behind Swank and Jelinek’s theories and practices. I was hooked to trying out this scientific logic of flexible oils to rebuild the myelin sheath. I also increase my Vit D3 levels; increased my meditation time to ease the cognition lesions and various other aspects were fine tuned…as well as the different diet.

I’m ever so pleased to say that I’ve just hosted my first party in 7 years, to celebrate 3 months of feeling in remission. I’m socialising, volunteering, walking, cycling and generally living a very different life than anything I am use to.

A huge thanks to the wonderful charity and work involved at OvercomingMS.org

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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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Roller coaster 

I’m feeling sad at the moment as I’m poorly. Wow, what an inviting way to start this blog, eh?!

My body has taken on an extra illness…alike to trying to get two bicycles home at the same time. There’s a lot of awkwardness. I’m yet to know what this new kid in town is called, however I sure know what it looks like. Okay, so away with analogies…

Despite this being a blog about my MS, I needed to empty my mind somewhere and here seemed the logical place. I feel like I’m riding against the tide…oops there goes another analogy! What’s with my immune system? I mean it’s starting to seem massively challenging to cope with all the fighting. Sometimes of course I try and harmonise with this battle. 

In a couple of weeks I’ll get some blood tests results back. I really hope that something shows up as I really wish for an easier diagnosis than MS was. Meanwhile each day is becoming a struggle and now my emotions are starting to get involved also. I’m in a lot of pain and am trying to ride them out. I take valerian tincture which sometimes takes the edge off of the pains or just makes me sleep. However even typing this is ever so painful, as all my limbs are in pain. I have an idea of what is going on due to some triggers occurring, however I’m far from a medical professional. Alas…in my view some medics are also far from the medical level I expect too! 

I’m limited on what I can do at the moment however I keep telling myself to be grateful for the things I’m still able to do. I’m also hard on myself most of the time so there’s a bit of a catch 22 situation in the background. I am so bored though. I’m far from being comfortable being a person who thrives on sitting around, eg in front of a screen. However at the moment I’m having to play along with being one of those.

Sometimes when I feel at a crossroads I pick up the guitar and make some noises with the strings and my vocal chords…albeit for my ears only. However the guitar is likely an impossible task at this given time. Talking of which I am going to need to stop typing as I need to rest my painful digits. Note to self…find a good speech recognition app.

Well…I shall now close this window into my life and let you go on with your day.

Thanks for dropping by and reading my ramblings…

Oh before I go…I’ve decided to tweak my Wahls Protocol diet to the Autoimmune Protocol which is cutting out some leaky gut triggers. This will hopefully ease some autoimmune symptoms over time. I’m desperate these days and so this is what I can try for myself.

Bye for now 😀

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Into the Forest

I feel the need to empty my mind…I’ve probably said that a few times on here. My feelings; my centre of mental gravity; and my location of focus are all rather off balance awaiting to be cultivated and tamed. Or perhaps I need to be set free to roam first…and then be tamed. Well, anyways I’m going to see where this mind-emptying blog post takes me. Take a seat and step inside my mind and life…you’ll be allowed out again soon!

I’m delighted to have recently discovered that my MS is very stationary, and has been since my last MRI in 2010. When I say my MS, I mean the overall progression. This is still far from the day-to-day anything-goes lifestyle I lead through living with Multiple Sclerosis. During my friendly and helpful consultation I was also informed that a number of my physical MS-like symptoms are in fact likely to be from anxiety. Some will be from the cognitive damage I have however some are fixable! This is great…and scarey also. It was an eye opener into realising that a lot of my stress is actually anxiety. I had to accept that my mental health was seriously encroaching on my physical health. So this has led me to varying thoughts, feelings and uplifted my security – of what was me trapped in a constant life of familiar stresses and denials – to an open can of anxious worms. I’ve tried to see the positives in this news, whilst start that ball rolling into getting some treatment. 

I took a trip to the GP…with my list of administrative requests. I got my referral form for some talk therapy. I have since discovered that my neck is fine according to the scans so I am left with rather conflicting views as to the cause of neuro flare-ups from me tilting my head and neck backwards…mentioned on posts in 2013. Whilst at the GP I took the opportunity to request a Rheumatology letter I had not seen nor been sent. So I now have a copy and it explains the situation with my knees, shoulders and perhaps my neck. Early onset of Osteo Arthritis with no follow up care needed. Arh, so this explains how come I heard nothing afterwards, in 2013. So…I find confirmation that my knee challenges are indeed OA and that my MS started a few years later. 

If you are still awake…we shall move away from the historical timeline that is my health.

So…although perhaps a little off track from MS, which itself entails daily anxieties, I am now entering a learning phase as to who I really am, as an adult. I’ve discovered some helpful books which are aiding me to separate from the adolescent years to the adult years. I’m looking forward to throwing off some of my baggage and fInding that my MS is a lighter load than I thought. When I compare health challenges to MS, and the permanence of it, I feel positive about the chances of recovery from these sidekicks I tow along. I feel somewhat overwhelmed, scared, bewildered, sad…and many emotions as I start to leave my safe and familiar perch to fly into the forest of unknown newness. However…I really do see this to be the best way forwards. Opportunities, chances, lessons and new directions.

Life with Uma, my assistance dog, is levelling out (thank goodness). The bond and challenges are aligning healthily. Last week we went on the evening bus three times…so to suss out the order of embarking and disembarking; learning to adjust to given hurdles in a wheelchair; and for Uma to get bus practice to build on her confidence. We’re a bit of a pair though…helping one another through the anxiety of people and buses. There is security in knowing that my partner collects us the other end, after her day of work. We did it! By the third trip Uma realised that it’s more comfy to lie down. The bus is quite empty which aids us with our building blocks. Each trip was a different set up on the bus with layout, people, stops and drivers. We probably need a few more practices on this quieter bus for me to make sure Uma goes on and off the bus in the order which is most calming for her…and for me to build on coping with people watching. Yes, there’s a lot to having an assistance dog and to bing a wheelchair user – especially using public transport. And wow, as I stroke her head and ears my mind is so distracted from people, anxiety and hurdles. Animals are so powerful.

Here she is helping me at the bus stop!

   

This photo makes me smile so much…she had managed to pick up my bus pass just in time for the bus arrival.  Thanks Uma for helping me.

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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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