Holistically MS

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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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Carve Your Own

After a series of hospital appointments of being poked and prodded I feel that it’s time to evaluate the benefits of being told what to do from a medical stance over my MS. Perhaps it’s just a phase or perhaps it’s a corner being turned for me. However it has created a need to assess and to take some control over my self. I’m starting to ask myself what will actually be beneficial; which appointments will actually help me and which ones will be worth any disruption to my MS.

As with so many aspects of life and certainly many illnesses or dis-eases you want more control. During my time when I was told I do not have MS, when indeed I did have it, a counsellor use to tell me “choice is control”. Yesterday this felt very poignant when one specialist informed me of everything she was doing followed by the other specialist whom just did stuff without explanation and without asking me. This was all for my eyes and was definitely challenging for me. Afterwards I was emotionally and physically tired…asides from the excessive waiting time there was the invasive aspect. It did however make me reflect on two things: I have been against animal testing for a number of decades and yesterday I felt such a small fraction of the torture that animals are forced to endure…I refused one examination due to the invasiveness and stress of it…however those animals sadly have no choice. The other thought I had yesterday, whilst recovering, is what this blog is about. My partner summed it up with the words “conveyor belt”. So this was another possible title for today’s words…however I want it to be positive and to aid the future. Oh, I am pleased to report that my optic nerves are doing me proud and in contrast to the classic MS symptoms they are holding their own. This just goes to show that everyone with MS has different levels of symptoms and patterns…as I’ve said many times before – we are all unique and different to one another and so is MS.

One thing that I do find increasingly challenging is the continual need to make choices about how to manage my MS. There are the drugs, the appointments, the medical experts, the daily living methods, the mental and emotional challenges as well as decisions of when to accept help. It’s slightly ironic for me having cognitive lesions and yet still having to figure out when and how to manage the above. I feel very privileged to have my partner’s help in making these decisions with me. She has an outside view however knows the nitty gritty of what I endure…and what she endures too!

So I want to start asking myself what will truly help me…if an appointment will be productive. By this I mean the outcome and if I will respond with taking medication or feel differently about the results. The burning question is: will it be of any benefit to me, to know the answer from an examination? Often, I’m realising, it is solely for the medical profession to have comparison later on down the line. Of course this may prove useful however so may relaxing and having laughter in the here and now instead.

I have a wish though…to be more positive whilst still being realistic. A bit of a challenging see-saw. Having had medical issues for so much of my life I have got into a partial cycle of negative thinking. Part of this is a self-preparation strategy which I have built up…especially with having MS. The other part is a childhood one of which can now be left behind and my self-esteem be raised. So often children compete for attention…a natural thing to do. So when one child gets ill and they get attention a natural pattern emerges. Much like when one child excels at school, they then may feel pressure to study harder in order to receive praise. To feel good about themselves; to feel self value. Perhaps my recent medical journeys will help me focus on what helps me as an adult. Yes, naturally, I worry about my future with MS – I’m human. Yes, I have concerns over every changing symptom – however it’s really time for me to realise that this is real life. There are implications from symptoms and also from negative thinking. So let’s try to flip that coin over and leave it there. Carve out a new journey…and try to keep it all light.

I’ll just quickly tell you about some homemade therapies I have been doing…with the help of some tech. I have been introducing art therapy and music therapy into my life. The latter after watching a TV programme (When Bjork Met Attenborough). A neurologist was highlighting the amazing effect that music has on the brain. Music reaches so many parts of the brain – way beyond spoken and written words. Since easing my Sensory Processing Disorder I have been able to enjoy music and I have been thriving on this. Since watching that TV programme I have realised the importance and effects music has on myself. I have an app on my gadget to create music…to play with shapes to make sounds. Experimenting in this way is important to me – relaxing the mind and distracting the misfiring of nerve messages. Doing art on my gadget really helps my also. I can paint and doodle, write and erase stuff so easily, all on a screen – and in bed if needed. This again calms down any misfiring messages, however I also do art when I am just feeling creative too. It’s lovely to play and experiment.

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Of course I want to be healthy…there are far happier things to achieve and to receive when we are healthy. There are also many ways to turn around the lives that we have – whatever challenges get thrown at us. Maybe one day there will be a cure for MS, however in the meantime I have the most important job to do…to ease my dis-ease. Perhaps a mantra: Ease my dis-ease.