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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.


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.


Spinning It Around – Regain Chances

I’ve been having some good times recently whereby I’ve had some different thoughts. Better thoughts. More positive thoughts.

Prompted by a question asked on Twitter about peoples instinctive thoughts of what they feel causes MS…I had some thoughts.

So having answered with my thoughts that it’s a nutritional deficiency plus a weakened immune system, thus giving stresses to the body and causing a dis-ease. Whilst waking up in bed this morning I thought about this some more. I then had a feeling of awakened insight into how my body got caught up in this. To spare you of the details it’s suffice to say that after some typical teenage situations and times, I had some traumatic environmental stresses and also some anesthetics during operations causing body stresses. Both sets of operations were challenging and slow to repair, plus some more traumatic stress and grieving. To be honest as a person in their late teens I turned to drinking alcohol to deal with all this strain on my body. So whilst I required nutrients I was in fact depleting myself of any that I had. I decided to increase my self-pressure to complete my studies despite the health trap I was in. This all happened within three years – which is rather intense when I look at it now! It’s just one of those circumstantial things.

Everyone with MS, I believe, will have a story of when their body found the battle increasing beyond the ‘elastic limit’. So…what I have realised today, from deep within, is that I really need to be gentle on myself. By realising that my circumstantial stresses weakened my body, plus my sensory processing disorder as a child contributing, I need and want to really feel the realisation that by relaxing and accepting weird things as just that etc – I have a chance to vastly improve my lifestyle and my attitudes. This has been demonstrated to me through having such health challenges. Sort of a catch 22…which now I can spin on it’s axis and see how much I can improve.


Is it too late? That’s a matter of belief. Sometimes I think yes and yet my foundation belief is that my body as yelling out to me to stop and pay attention – so maybe now is a good time and perhaps rebuild what I can.

So, what about all the other people with MS? Does this mean that people are getting far too caught up in challenges which cause stresses on our bodies…our brains then our bodies? Are we missing something crucial like noticing our body needs? I reckon perhaps so. If we tune into our human workings more then perhaps we will see what needs attention and how. Analogy time…this will be short…”you’ve a car that has some issues. These issues get ignored. Things get worse and other things start going wrong. The wiring gets worn out and needs repairing. You ignore this too. So eventually the car is far from reliable. In fact the car becomes a problem. You take it to the mechanics…they say what is wrong. You think great.” Here’s where the analogy differs, as with a car you have a choice to fix it or scrap it and replace it. Of course you only have one human body and mind…so the moral of the story is to keep an eye on yourself, listen to yourself and you will reap the benefits.

Hindsight vs youth – When I found out about having glandular fever (after my second lot of ops) I realised that I’ll have to avoid alcohol. This was challenging however I did my best…aged 19 and living away from the family home. My diet was lacking imagination – an age thing. It’s strange that MS mainly affects people when they are in their young years. I wonder if this is when we have yet to learn to be responsible to our bodies.

So my conclusion is that I believe that I have a choice to act now. A bit like climate change in fact! If I choose to carry on how I’ve tended to live…then the future now, from this awareness, appears a little scary. However if I really make a conscious effort and focus to go easy on myself and let my body get what it needs to try to heal…then I have chances. And chances, my friend, are worth a lot to me.

A chance is an opportunity
A chance is a light on
A chance is a possibility
A chance is worth taking
A chance…once again