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Access to Information

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Thursday June 05 2014 11:00 AM

Bite Sized Pieces

It was hard to know where to begin with this months topic of 'access', as I don't have any physical access issues. There are, however, other things that get in my way. You could call it restricted access (to my life). I'm thinking particularly of the times when fatigue, nausea and migrane gets the better of me and I have to take to bed, with no light, no sound, no movement. This usually happens on a Saturday when my children are expecting to be out and about. So, I would say that MS limits my access to fun. If MS was a person, I would describe him as a sulky, spolied teenager determined to cause a fuss on family occasions, when you least want it.

If I were to grill down further, my biggest access 'issue' is access to information, but not in a way that you would think. In what you might call a First World Problem of the internet generation, I sometimes feel that I have too much information about MS.

When I first became ill, the little piece of research that I did on 'optic neuritis' before any further initial investigations, suggested that I had MS. This softened the shock when my neurologist in Beaumont Hospital first mentioned 'lesions on my brain', 'lumbar puncture' and the other science bits. During my few days in hospital (and on my follow on appointments) the neurology team spoke to myself and my family respectfully and in simple language. I listened intently, but most of it didn't sink in.

I was actually admitted to hospital around World MS Day in May 2011 (Happy MS Anniversary to me !!). As a result, there was an information stand in the hospital foyer, but it was the last place that I wanted to be. When I came home from hospital, I felt that I should be reading about all things MS. But again, I found it hard to digest what I was reading. I spoke informally to family and friends who had expertise in nutrition and exercise relating to MS and chronic illness. Although I could see merit with some suggestions, I just wasn't able to come up with a plan.

Pre MS I was pretty anti-medication, barely taking a pain killer. I surprised myself then, when my MS diagnosis was confirmed, how quickly I agreed to take weekly interferon injections. I had all of the academic and scientific literature, which I read over and over, but did not absorb. If I was sitting a Leaving Cert paper about the science behind the interferons I'd fail miserably. I surprised (and disappointed) myself how passively I agreed to take the Big Boy drugs. The drugs were recommended by my neurologist, who I trust and respect. Truth is though, the reason I agreed so readily was that I am afraid not to. I want to be as healthy as I can for myself and my family and I feel that those damned injections, much and all as I hate them, will help me to stay well. 

It is generally agreed that you can assist your MS wellbeing by reviewing your diet, looking at dietary supplements and alternative therapies, taking time for rest and relaxation, but also taking regular exercise, avoiding stress, looking at the work/life balance, drinking more water. None of this is rocket science, but I have felt completely overwhelmed by it all, with a sense of urgency to do it all.  It can be tricky.  Feeling exhausted and feeling I should rest but also feeling guilty about having no exercise and stressed about finding more quality time for the children - A girl can't win !

I find that person-to-person interactions have been the most useful to me. There is an excellent MS Nurse telephone support service in Beamont Hospital – The nurses are at the end of a phone and always make you feel that you have been listened to. The local MS Ireland support service has been invaluable to me, initially to reassure me that I wasn't going mad and to talk me through the initial few months. Later, meeting fellow MSers in coffee mornings was fun but most importantly was a great source of information and tips. One of the best pieces of advice was to incorporate turmeric into my diet. My joint pain levels have significantly reduced as a result of taking a daily dose. I would higly recommend it.

I realise now that some of my inability to digest and retain information about MS was part of the shock of the diagnosis and coming to terms with it in my own head. I've taken the pressure off myself to be a walking encyclopedia on MS. I'm taking my time. It's not as if there is any rush - I will probably have my whole life with MS. Having said that, it is reassuring to know that I can access additional information and support when I need it. I'll access it when I can, in manageable bite sized pieces!

Author: Lucina Russell

Tags: access, worldmsday, information, source, tips

Comments

Joan Jordan

Thursday June 05 2014 12:06

Great blog Lucina! I agree that being listened to is so important. I'm off to buy some tumeric...

Willeke

Thursday June 05 2014 12:57

Fantastic piece Lucina! I completely agree, there is so much information out there that you don't know where to begin. Love the way you write!

Caitriona Higgins

Tuesday June 10 2014 12:48

HI Lucina, it was so reassuring to read your blog. I was diagnosed last year and have been feeling exactly like this. So good to know that others are feeling like this too. Feeling a lot more normal now :)

Lucina Russell

Wednesday June 25 2014 20:33

Thanks for that Caitriona. Hang in there and be well !

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