Wednesday, 12 February 2014

Positivity, Medicinal Gin and 'Life Limiting' Spinal Cord Cysts!

YESTERDAY
I was in a 'life is shit' mood, tears and self pity the lot. I had an appointment with my Neurologist that morning and he told me that the cyst on my spinal cord has probably grown and was the reason behind me not being able to feel half of my face at random times... but it was inoperable because of it's positioning and that I just had to deal with the pain, pins n needles & tremors, even though they were getting worse. There are meds though, except all the meds they can give me to help lower your blood pressure and as I have incredibly low blood pressure as it is... I can't take any of them (we tried that already I fainted on top of Rocky... not a good look). I have dealt with this for ages now and I have almost gotten used to it but just wanted a diagnosis so I could mentally deal with it. Weirdly, in a way, I was hoping he'd say 'YEP it is definitely MS, this is how you deal with it, these websites can help too, it'll be with you for life but we can deal with it because we know what it is'... but instead I am stuck with not really knowing what to do and dealing with it myself, whilst learning what I can and can't do, with no support network or information websites to hand. It says a lot when you would prefer it to be such a horrible illness such as MS, but it has gotten to that stage now that anything solid was better than nothing at all and in a way, I would have people to talk to about it at least and people would understand it more. Don't get me wrong though, I'm glad it isn't, I wouldn't want MS obviously, I have seen what it does and I wouldn't wish that on anyone, ever. I'm probably not making much sense, it is hard to explain the feeling of not knowing... I just wanted an answer so I could move to the next stage.

It was when he said the fact that it was the cyst causing it and I had to learn to deal with it and described it as 'LIFE LIMITING'... that is what freaked me out I think, that is quite a daunting prospect.

By the time I had gone to bed I had gotten my head around it a little bit more and was a lot calmer. I spoke to a friend online who actually has MS itself and he made me see a few things clearer. He said that there are lots of things I can do to help my symptoms that weren't medication based and that researching things is my answer to coping with the issues it causes. He had all the MS symptoms for 15 years before they finally diagnosed him and he learnt to deal with them and what triggers them before he'd even been diagnosed, so he understands where my head is with the 'what ifs' and 'what do I do's'. I realised that at least I can settle knowing what is causing it now... at least I can stop wandering about the 'what ifs' and focus on those 'what to do's', at least I know now what it is.

Plus the neurologist told me that I could help my tremors (shaky hands) by... *drum rolls*... drinking alcohol... *Cracks open the Gin* Good work, I can now quote Dot Cotton every time I have a drink 'Oh, go on then... for medicinal purposes only, of course' *chinks glass*

TODAY I have picked myself up, brushed myself off and researched (again) how to naturally help the symptoms of MS, as they are identical to mine so might help. I am positive that this won't get me down and be 'Life Limiting' and that I will beat it into submission and focusing on the fact that so many people have it so much worse and little ones like Elizabeth (Laura from Tired Mummy of Two's little girl) go through their young life fighting things like leukaemia, doing treatments that make her ill and tests that are so painful... and they just smile through it... what have I got to whine about, a bit of pain, a few pins n needles and numb patches?... pffft that is nothing to what she goes through daily. Then there is Kyd, 11 years of bowel pain and still laughs daily and never complains and Rocky, a huge ball of infection in his armpit for an entire year, that must have hurt, yet nothing but smiles... I really DON'T HAVE ANY EXCUSE TO WHINGE!

'There is always someone, somewhere, worse off than you.'

I say that all the time, on my down days I have to force myself to remember it though and when my issues flare up, I have to take a deep breath (an ibuprofen) and as I breathe out remember how bad it 'could' be and that I am lucky to be here at all. As they say, positive thinking is the key to happiness after all.... if that fails, I just make Rocky laugh and the world seems to melt back into a smile again... who can't smile at their own baby laughing... any baby in fact!
 
'All that we are is the result of what we have thought.'
- Buddha

Positive, Positive, Positive, Positive, Positive, Positive, Positive, Positive, Positive, POSITIVE THINKING MAKES FOR POSITIVE RESULTS!!

Saying that, Iam going to cover my back here... I may whinge about it sometimes, you know, on bad days, when positivity has gone to pot and life seems unfair for so many and I can't understand it... but then I think everyone deserves SOME down days and dips into self pity... if not just to appreciate the good times that bit more, eh?!

11 comments:

  1. You do manage to stay amazingly upbeat for someone who seems to have a lot on their families health plate. My Dad was given 8 years to live when I was 12. I am 40 and he is still going strong- he is a great believer in the power of positive thinking, and a buddhist, so I just know that a positive outlook can bring so much good.

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  2. Goodness Alice, I didn't realise you had your own health issues too, although I am sure you must have mentioned it before. I do think positive thinking can make a HUGE difference to one's well being but I am currently not doing too well on that front myself! Xx

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  3. cakesphotoslife (Angie)12 February 2014 at 16:03

    love you x

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  4. Oh love, you are amazing aren't you??
    And that's such a good mantra - 'There is always someone, somewhere, worse off than you.' noted, and I think if often for myself too - hugs to you x

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  5. Oh wow Alice. You do at least know it's a cyst on your spine though right? Hope you can find a way to cope with the pain *passes glass of gin and a joint*. Whaaaat? It's scientifically proven I believe ;0)

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  6. Big hugs to you. You and your family are amazing!

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  7. I can't believe the doctor told you to drink alcohol to stop your shakes! Having a condition with no clear prognosis is very tough and you need to take every day as it comes. You do extremely well and have two amazing children. Have you ever seen Finding Nemo? You remind a bit of Dory (in a nice way) 'Just keep swimming, just keep swimming' xxx

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  8. It sounds like you have an amazing positive attitude towards the things that you dealing with and you are perfectly entitled to whinge. Sending hugs and gin!

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  9. YOu know where we are when you are having a down day.

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  10. tired mummy of two13 February 2014 at 13:53

    :( you are amazing and you go through so much but as you say you know what it is now, it will be easier to cope with and I will be more than happy to help with the drinking!

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  11. Darling, I had no idea. I'm just going through scans and tests for MS so this post caught my eye. I don't know what to say, but you are an amazing powerhouse lady. I raise a glass (of gin) to you. Much love H x

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