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Broken Toy

Here is a letter I wrote to a very dear friend…so I figure it will be suitable for a post. It’s completely depressing…so look away if you are feeling you need positive energy right now.

Bummer…you’ll be asleep.
You’ve always said, so kindly, to call on you whenever I need to. Now is one of those times. I’m trying to type to you amongst my tears of self loss. I just can’t seem to accept my health and what it’s done and doing to my life. I’m so massively upset, full of grief and loss – like I was when I left Oz all those years ago…except my health has progressed so much since then – in a bad bad way. I just do not know if I’m cut out to be a disabled person. There just seems to be ongoing battles that push me down. I try so hard Shain…I really do. I even hate writing this on this dreaded fb site however at the moment this is my way of contacting you. I miss…a long list of my life. I am suppose to look forwards however that to me is grim beyond grimness. I am in despair. I am so broken; heartbroken and lost. Hurt. Weak. I’m like a broken toy that’s been fixed so many times that now I’m full of weakness.

I know we made a promise. I’ve forgotten the detail…asides from me to stay alive. I want to. However I am broken…sad…stressed…damaged and worn out. When is too much too much?
So you may be wondering what has sparked this off…well asides from my wheelchair being broken and the national health service yet to fix it…and no emergency repair service…it needs changing for a more suitable and supportive wheelchair; I’m needing more and more aids around the home; more help; winter is looming which means wheelchairs in dirt and rain and cold and darkness; my health is declining; I miss doing what I love doing…I’m not ready to accept this life however I have to; I feel that I have so much to sort out to ease every day living…it’s stressful; exhausting and costly…especially if I try to save hassle.

I don’t want my life like it is and like it’s heading. Whatever people say…I am not actually coping. It’s a front. A cover – so I can enjoy what little snippets I can. Yes I am hugely depressed…and on the list is to get a counsellor – even that’s tough due to accessibility. I get hassle from the health service for symptoms and other issues. I’m trying to get onto benefits to ease the finances and to open doors to other things…and that is proving to be extremely long winded and exhausting.

Do I just want to give up? Yes and no. Yes, if it’s going to carry on like this. No, if things can be sorted out and I feel at ease with myself and hurdles in life are eliminated.

I miss you Shain. I miss lots. I miss memories. I miss adventures…nice adventures and being able to take part and enjoy things. I miss being able to get into places. I miss blending in. I miss my inner self. I miss my life choices. I miss hope.

Lots of love to you from all around the globe xxxx

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Sent to me from Shain, several months ago, of South Australia sunrise.

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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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