Holistically MS

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The Corner

I just need to empty my head. Today I really realised that my bathroom stuff is challenging…more than I’ve experienced. It is like a looming cloud…sometimes the sun breaks it up and other times it feels like a storm may be brewing in the future. As much as I try to prepare for the next level…along comes another challenge/change in weather pattern.

At the moment it feels like I’m on a journey and at some point I know, I think that I know and I know that I think, a corner will be required to navigate. This corner is in the bathroom. The place where I deal with my hygiene and habits. The place where I’ve gone from assisted child to adult…and now regressing to needing help again. Whoa! Gulp! I’m a shy person when it comes to that arena. So when I’m going to have to turn that corner and need professional help with my care it is going to be a leap of unknown…something or other. Of course I need help…I already need it. If I get a mini break then I’ll call this a mock rehearsal to accepting the likely. Sigh. This will probably just be a blip. It’s far from deserving the word ‘just’ as this blip has been acute. And is far from cute.

So anyways…this bubble is going to get burst at some point and reality is sure to kick in. I want to stamp my feet like a toddler and refuse help. Asides from the lack of stamping ability and far from being a toddler…how long will it help to refuse assistance? Of course it will help to have help…it may be a lifeline even. However…do I really have to have some stranger in the bathroom with me?! Maybe I can have a quiet word with my MS and request to get off of the bus a stop earlier. Maybe I can manage it alone and stay safe. Maybe I can research into tips and equipment for solo bathroom duties. I hope so. God…I really hope so. On that note I feel ready to sleep.

Thank you for letting me empty my head.
Thank you for reading my thoughts, without needing super powers.
Thank you for even caring.
Good night.


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The Runaway Train

My MS is really starting to feel like a runaway train…things becoming more challenging and more things needing to be sorted out. It’s a balance of pros and cons whilst being reminded of what I feel is my old life…or previous life. I use to love being outdoors, walking or cycling and most things in the outdoor air. As I spend my waking hours sitting down, with a minority of time standing to stretch I wonder whose case I am living in. The desktop photos on our laptop are of our time visiting Dorset and mainly photos taken whilst walking along the coastal path. The pictures are so lovely and are set onto random. I miss it all massively. I just had a guilty feeling or rather a thought that I ‘should’ feel good that I actually managed those activities whilst my MS was building – whilst the train was just starting to gather momentum. I found these walks tiring however I paced myself with food and breaks sitting down. With cycling I use to find I let off steam and felt the freedom whilst exploring and relieving energy. The good old days that in all honesty were a bit challenging…especially as the medics were denying my health after my diagnosis was retracted. Those days were certainly hard for me however in good old hindsight at least the runaway train was going slowly.

And now…the driver has done a runner and I’m left to just watch the slow car crash or runaway train. Take your pick with analogies here. I am! So here’s another one for me to explain what it feels like being in a different body or on a different planet…I’m in someone else’s case or shell. There’s little space to get comfy and someone else is controlling the journey. Big sigh.

It’s very safe to say that I am sincerely finding my life increasingly challenging to fathom and lead. This runaway train has come across obstacles that have beaten it for a while however the train in the end has won and continued on its way down the hill.

Grove RetreatSo what is it that I can do in these low moments? I’ve asked for help. I’ve eventually accepted that others can help me and that this is totally okay. If I was to tell myself to accept the motions and accept that at the moment there is no cure for MS. I am happy to also tell myself that there can still be hope for a fuller life and hope for a cure at some point. And what shall I tell myself about having to live a totally different and foreign lifestyle? Hmmmm…just make it the best you can and try to have some fun; be with people when you are up to it and when others are available; see if you can find new ways to entertain and give satisfaction within a new journey – perhaps new hidden things will appear and channel your life towards new arenas. Find some benefits of having a disease which immobilises and captivates so much of your body.

I’ve yet to feel able to take this advice…however maybe just by coming up with it and typing it, this may plant a seed. If you see someone on a runaway train…run with them and listen to them, until they are feeling safe.

Bob Marley said “Don’t worry about a thing, every little thing’s gonna be alright”
If you say so Bob.