Are you a reader from Western Australia? Do you have teenagers aged 13-17? Do they look for health information online? Yes, yes and yes? Oh my God.... please read below. I need your HELP!
Hi
friends. As you may know I am currently involved in research as part of
my Honours degree at Edith Cowan University. As an enthusiastic seeker
of health information online, I have decided to explore the experiences
of adolescents aged 13-17 years old,
living in WA, who have sought health information online. Through
examining where Western Australian adolescents are seeking health
information on the Internet, by means of which devices and understanding
what their experiences are of using the Internet for health
information, this study will deliver information to health services to
provide targeted health messages and improved delivery methods for
health messages to adolescents living in WA. Participants are being
recruited through this blog post, after which I will send
you, the parent or guardian an information sheet and consent forms. If
you allow your son or daughter to participate in the interview and
answer questions about their online health information experiences, they
will be asked to sign a consent form and participate in one to three,
one on one Skype or in person interviews with myself lasting between
20-45 minutes in duration. Your adolescent’s participation is voluntary
and if they choose to participate, they will be free to withdraw or not
answer questions as they see fit. This research has been approved by
ECU’S School of Psychology and Social Science Ethics Subcommittee. Once
the study is completed the data will be stored securely at ECU and will
not have any identifying information about your child. If you have any
queries about this research project, are interested in finding out more
or would like your adolescent to participate please do not hesitate to
contact me by leaving a comment with an email address I can contact you on and I will send you a
thorough information sheet about my research. Thanks for your time.
If your teen fits this profile, please leave me a comment with an email address, which I will NOT publish. And I will send you an information pack, complete with consent forms.
I have to put it out there that I will be in no way counselling your teen... and I am not interested in the "why" behind why they have looked at the information online, but rather of their experiences of looking for health information on the internet. This can have occurred at school or at home for personal reasons or for school. I have a current Working With Children Check.
If you have any question feel free to leave a comment and email addy and I will answer asap.
Thanks.
Lee-Anne
PS, If you know of anyone who might be interested in taking part who lives in Western Australia, please refer them to this post. Ta.
Thursday, June 7, 2012
Wednesday, May 30, 2012
May Post
Well I thought I'd better get a post in for May. Who would have thunk assignments and take home exams would take up all of my brain space... well I did, I think I was just in a state of denial. I love to blog, but it is a hard thing to do when you have already been writing all day. Academic writing also seems to suck the creativity right out of me - slurp!
But it seems to be worth the creativity been sucked out of me, as for my last assignment about suicide I received 80%. Yay me!
Right now I am in the participant collecting stage of my honours research. It is quite an anxiety inducing period. What if I don't get any participants... what if I only get a couple of participants... what if I get participants who said they had looked for health information online, but haven't really.... what if my participants don't want to talk to me during the interviews!! Well, those things haven'y happened so I will let them go.
I read about a girl who was diagnosed with MS at aged 12 today - World MS Day! It made me sad and angry, but also inspired as she was just getting on with her life. I think us older MSers struggle to come to terms with what having MS means more than younger people, who just seem to move on from diagnosis after the inital greiving period. Anyways... I have no scientific proof about what I just wrote, but here is the link to the story. http://www.mamamia.com.au/social/multiple-sclerosis-day-a-brave-and-heartwarming-story-from-an-incredible-woman/
Bye for now.
But it seems to be worth the creativity been sucked out of me, as for my last assignment about suicide I received 80%. Yay me!
Right now I am in the participant collecting stage of my honours research. It is quite an anxiety inducing period. What if I don't get any participants... what if I only get a couple of participants... what if I get participants who said they had looked for health information online, but haven't really.... what if my participants don't want to talk to me during the interviews!! Well, those things haven'y happened so I will let them go.
I read about a girl who was diagnosed with MS at aged 12 today - World MS Day! It made me sad and angry, but also inspired as she was just getting on with her life. I think us older MSers struggle to come to terms with what having MS means more than younger people, who just seem to move on from diagnosis after the inital greiving period. Anyways... I have no scientific proof about what I just wrote, but here is the link to the story. http://www.mamamia.com.au/social/multiple-sclerosis-day-a-brave-and-heartwarming-story-from-an-incredible-woman/
Bye for now.
Tuesday, April 24, 2012
Back to Sleep Alter Ego - Run Run!!
I'm still here. Just busy with uni assignments is all!
So I am really proud of myself today... yes, even at this particularly early hour!
My alter ego woke me up at 5am telling me that I was not at all motivated to get up and run and that it was toooo cold and that my ankles hurt tooooo much and that I was sooooo tired and that my circuit was toooooo long!
My alter is getting too much air play these days I must admit. Kinda cheeky that she woke me up so early don't you think? Tends to happen when I have a lot on my plate.
But I dragged myself out of bed at 5.40 and ran for 32 minutes including one small hill and really enjoyed it, because it was cold, dark, quiet and my ankles didn't hurt!
So take that alter ego. Be banished back into the deep dark depths of my mind, far away from my conscious thought.
How does that work then, telling yourself you can't do it and then you do?
So what I think is don't listen to the bullshit excuses you tell yourself and just get out and do that thing that you tell yourself you can't do! Because you will surprise yourself - without a doubt!
So I am really proud of myself today... yes, even at this particularly early hour!
My alter ego woke me up at 5am telling me that I was not at all motivated to get up and run and that it was toooo cold and that my ankles hurt tooooo much and that I was sooooo tired and that my circuit was toooooo long!
My alter is getting too much air play these days I must admit. Kinda cheeky that she woke me up so early don't you think? Tends to happen when I have a lot on my plate.
But I dragged myself out of bed at 5.40 and ran for 32 minutes including one small hill and really enjoyed it, because it was cold, dark, quiet and my ankles didn't hurt!
So take that alter ego. Be banished back into the deep dark depths of my mind, far away from my conscious thought.
How does that work then, telling yourself you can't do it and then you do?
So what I think is don't listen to the bullshit excuses you tell yourself and just get out and do that thing that you tell yourself you can't do! Because you will surprise yourself - without a doubt!
Saturday, March 31, 2012
My Mini Meltdown
So it's the end of March and I haven't blogged for over a month... I better get on it then. I must add that although I'm not posting, I am thinking about it all the time. Like the last time I posted I have been very, ridiculously busy at uni.
Last weekend I had a mini meltdown. My husband woke up on Saturday morning and suggested to my daughter who had just woken up and jumped in bed with us that we would go to Cottesloe Beach and see the Sculptures By The Sea. I had been suggesting this as an expedition for a month, so at first I was like, yeeeeeeeeeeahhhhhhh!!! But then the reality dawned on me that I had a million assignments all baring down on me and I cracked. I ended up going to the beach, but it wasn't without tears and wailing, because I really wanted to be with my kids when they saw the sculptures for the first time, yet I had shitloads of reading to do. At my husbands prompting I comprimised and took some reading to do on the train. It wasn't ideal, but at least I got to do both. I wasn't even paticularly disappointed when we figured out the reason there were no sculptures by the sea, was that the exhibition finished the week earlier.
The result of my mini meltdown was that I went and discussed my predictament with my lovely supervisors (entirely sincere "lovely" there!) I am not 100% sure what made me think I could complete 3 units at uni, be a fulltime mum and wife, play house and look after myself... might have something to do with the encouraging words of the fourth year coordinator at the time of enrolment. But anyways... all those balls in the air... I could see the hole I was about to fall into, I've fallen into it before with study, so I had a pretty good idea that if I kept on going the way I was, I was bound to fall in. My supervisors both said to me, family comes first - drop some units. So, academics are telling me to drop units, put my family first and look after myself - should I do it... yes! And that is what I did. So I am feeling a little more under control and just a little bit in two minds about sitting here writing a post rather than reading for an assignment.
I have just submitted my research proposal and have decided that I will post the abstract from it for you all to read. The abstract is technical way of saying summary! This is what I have been working on for the last few months. There is a program that the markers may run my proposal through, called Turnitin and if they were to do this my work would come up plagiarised - but at least will be copied from me! Here it is:
Til next time... stay safe.
Last weekend I had a mini meltdown. My husband woke up on Saturday morning and suggested to my daughter who had just woken up and jumped in bed with us that we would go to Cottesloe Beach and see the Sculptures By The Sea. I had been suggesting this as an expedition for a month, so at first I was like, yeeeeeeeeeeahhhhhhh!!! But then the reality dawned on me that I had a million assignments all baring down on me and I cracked. I ended up going to the beach, but it wasn't without tears and wailing, because I really wanted to be with my kids when they saw the sculptures for the first time, yet I had shitloads of reading to do. At my husbands prompting I comprimised and took some reading to do on the train. It wasn't ideal, but at least I got to do both. I wasn't even paticularly disappointed when we figured out the reason there were no sculptures by the sea, was that the exhibition finished the week earlier.
I have just submitted my research proposal and have decided that I will post the abstract from it for you all to read. The abstract is technical way of saying summary! This is what I have been working on for the last few months. There is a program that the markers may run my proposal through, called Turnitin and if they were to do this my work would come up plagiarised - but at least will be copied from me! Here it is:
In 2011, 95 % of Australian 15-17 year olds accessed the Internet in the previous 12 months (ABS, 2011). Adolescents utilise the Internet for education, recreation and interaction, however they also utilise the Internet to obtain health information (Thurlow & McKay, 2003). The objectives of this research is to ascertain where online Western Australian adolescents are seeking health information, by means of which devices and what their experiences are of using the Internet for health information. A phenomenological qualitative design will be employed within a narrative framework so as to gain an in-depth understanding of the experiences of adolescents who have sought health information online. It is proposed 15-20, 13-17 year olds will be required to participate in oral interviews via online (Skype) video calls, which will be recorded and transcribed. The transcripts will be reviewed and analysed from within an ontological social constructionist perspective. The research will generate understanding of how the delivery of online health messages can be better targeted at adolescents.
Ta Da. There you have it. What did you think? This is what my year will consist of... researching the online health habits of teenagers. Hooray!!
Til next time... stay safe.
Tuesday, February 28, 2012
I'm Not Lazy Just Overwhelmed!
So uni started for me last night and this morning. I am doing two units, Health and Clinical Psychology and Advanced Developmental and Professional Issues in Psychology. Both sound pretty good to me - more practical than other units I have done thus far. I am starting to think, after 4 years, the powers that be at uni think I am serious about becoming a psychologist (finally)!
But I can tell you this for nothing... I am shitting myself!!!! Two units, with all their reading, assignments, group work, exams and in class talks is freaking me out - not to mention my impending thesis. I have never done so much academic work and run a family before... plus exercise and watering my garden. Oh what about writing my blog? I'm not lazy about posting, just overwhelmed!
One big, massive, ginormous weight off my shoulders is that I have just about finished my research proposal for my thesis that I will be completing this year. So I can nearly finish having a coronary about it. I am quite proud of myself, because only a a couple of months ago, having received an example of a proposal from my supervisors, I thought I was way, way in over my head and about to drown. However at a plodding pace, I have written it, written it well AND now it is nearly done. Yay me!
It is normal for me to feel completely overwhelmed and ridiculously stupid at the beginning of semester. I know this, because I have been there before many times. I know this and am making allowances for it this time, ie I am trying not to beat myself up so much. I feel stupid because I haven't learnt the new information yet and I feel overwhelmed because I haven't done the work yet. I just have to get organised - super organised.
You know what, I can't give up running my family (and home), not that I do it alone. I was surprised when last night and this morning I missed doing the things with my family that I normally would at those times. Maybe surprising is the wrong word, but it was nice to feel that way - all sentimental and stuff.
I would give up housework if I could afford a cleaner, but wouldn't we all? And how about a personal chef?! Four short words for ya... 1. Buy 2. a 3. lotto 4. ticket!
I can't give up exercise at the moment either, especially since I have just recently taken up some strenuous exercise. I am planning on doing the "Step Up for MS" event on April 29th. It is a climb of 1096 stairs, up Perth's largest building - Central Park. Yes I am crazy. My hubby inspired me last year when he completed it in about 11 minutes with no training. This is the website http://www.stepupforms.org.au/event-information.html# If you live in Perth, maybe you might like to join me. The more the merrier!
I can't give up watering my plants or they will die and I'll have nothing pretty and green to look at during Western Australia's long hot summer. Obviously!!!
You know what I can't give up living a normal life, so study will just have to fit in with my life. After I get back from picking up my daughter from school I am going to write a plan for the next 3 months. It's only three months of being super dooper organised, then I can go back to my relaxed version of organised.
Or not, because then my thesis will be due!
As a very clever friend once advised me, baby steps. And if baby steps is what it takes to keep me sane for the next 3 months then baby steps it is.
But I can tell you this for nothing... I am shitting myself!!!! Two units, with all their reading, assignments, group work, exams and in class talks is freaking me out - not to mention my impending thesis. I have never done so much academic work and run a family before... plus exercise and watering my garden. Oh what about writing my blog? I'm not lazy about posting, just overwhelmed!
One big, massive, ginormous weight off my shoulders is that I have just about finished my research proposal for my thesis that I will be completing this year. So I can nearly finish having a coronary about it. I am quite proud of myself, because only a a couple of months ago, having received an example of a proposal from my supervisors, I thought I was way, way in over my head and about to drown. However at a plodding pace, I have written it, written it well AND now it is nearly done. Yay me!
It is normal for me to feel completely overwhelmed and ridiculously stupid at the beginning of semester. I know this, because I have been there before many times. I know this and am making allowances for it this time, ie I am trying not to beat myself up so much. I feel stupid because I haven't learnt the new information yet and I feel overwhelmed because I haven't done the work yet. I just have to get organised - super organised.
You know what, I can't give up running my family (and home), not that I do it alone. I was surprised when last night and this morning I missed doing the things with my family that I normally would at those times. Maybe surprising is the wrong word, but it was nice to feel that way - all sentimental and stuff.
I would give up housework if I could afford a cleaner, but wouldn't we all? And how about a personal chef?! Four short words for ya... 1. Buy 2. a 3. lotto 4. ticket!
I can't give up exercise at the moment either, especially since I have just recently taken up some strenuous exercise. I am planning on doing the "Step Up for MS" event on April 29th. It is a climb of 1096 stairs, up Perth's largest building - Central Park. Yes I am crazy. My hubby inspired me last year when he completed it in about 11 minutes with no training. This is the website http://www.stepupforms.org.au/event-information.html# If you live in Perth, maybe you might like to join me. The more the merrier!
I can't give up watering my plants or they will die and I'll have nothing pretty and green to look at during Western Australia's long hot summer. Obviously!!!
You know what I can't give up living a normal life, so study will just have to fit in with my life. After I get back from picking up my daughter from school I am going to write a plan for the next 3 months. It's only three months of being super dooper organised, then I can go back to my relaxed version of organised.
Or not, because then my thesis will be due!
As a very clever friend once advised me, baby steps. And if baby steps is what it takes to keep me sane for the next 3 months then baby steps it is.
Saturday, February 11, 2012
Great post
Check out this post by Travis White, "Everybody's Got Something".
http://blog.nationalmssociety.org/2012/02/everybodys-got-something.html
Make of it what you will - everybody's got something... a disease, financial problems, a big public speech to deliver, I dunno - criminal issues, lost someone they love... grieve and deal with your issues for sure, but to quote Travis, "you’re not a special case. Just get on with it.”
In my book, you really don't have a choice, face your problems and live or hide and die a slow painful death of self-denial, guilt, self-loathing and probably add a good serving of anxiety and depression on top of that too. Move forward - onwards and upwards.
The best reward is to realise this... Thanks for the quote again Travis, "We all have problems to face but we all have something positive to contribute as well". Perhaps it is as simple as living your life how you want to live it. Perhaps it is winning a Noble Peace prize. Perhaps it is raising lovely children. It could be anything that means you aren't standing still concentrating on your issue or problem.
Don't let "it" paralyse you.
Good luck my friends.
Thursday, February 2, 2012
Ode to Breastfeeding
I was once told, by a man I must point out, that I have boobs that a lesbian would like... hmmm go figure - what type of boobs does a lesbian like? (Probably not gonna live that one down am I?) Well I would have never, in my wildest dreams, even considered telling the whole world that in my very private pre-breastfeeding days, but after a grand total of 53 months breastfeeding two children I feel a whole lot more comfortable with my boobs and talking about them. Not that I plan on talking about them now per say, but rather of my experience in using them to breastfeed - in my own ode to breastfeeding if you like!
Looking back I was probably one of the least likely people to breastfeed babies if it went on how comfortable I was with talking about my girlie bits. Yes those things are attached to my chest but it didn't mean I wanted to talk about them or have a baby latched onto one because that might mean I had to get it out in public.
I'm not sure what swayed me to breastfeed... I guess ultimately it was falling pregnant that changed my mind. Surely what came out of my body would be better for my future bub than what came out of a tin - no matter how scientifically it was put together. Not to mention much cheaper and a hell of a lot more convenient - at the very least I wouldn't have to get up in the middle of the night, flail around in the darkness trying to make a bottle of correct temperature formula and then later, much later try and fall back asleep.
I definitely read something put out by The World Health Organisation, that said, breastfeeding for the first two years of life was the best start for baby. A random blow-in clinic nurse later pointed out this may have applied more to third world mothers. However, I had already decided that this would be my aim - two years of breastfeeding. Given what I've already written you would think this was a highly ambitious plan wouldn't you? A big ask for someone who originally didn't think getting her boobs out in public, even with a real purpose was for her in any shape or form!
So my first teeny weeny baby was extracted from my belly 15 days overdue. It was kind of weird trying to get her to latch onto my boob - blind leading the blind really. I was super tired after the C-section and then the nurse put the baby in the bed with me and I didn't get a wink of sleep at all. Was this what the next 18 years was going to be like?
I remember while I was in the hospital, I was about to start breastfeeding when my lovely (I mean that sincerely) father-in-law walked in. He kinda just stood there... maybe he thought I was like every other breastfeeding mum, who was used to getting their boobies out in front of anyone... but so early in the peace, I just couldn't get the girls out in front of my husband's father. It just wasn't right!!
My little Chynna doll was trouble, trouble, trouble on the breastfeeding front. You would think that for something that needed breastmilk to survive that she would figure out pretty quickly what she needed to do to get the milk. But no, not my little Chynna. She squawked and screamed and moaned and fidgeted and woke up like a thousand times during the night. Being first time parents, my husband, Ryan and I assumed she wasn't getting enough milk and so the breastfeeding saga commenced. You might ask if I thought about bottle feeding my little darling and the answer is yes. We tried so hard, but she simply refused to take the bottle, no matter which teat or bottle shape we used or who fed her. She was hell bent on breastfeeding while lamenting it at the same time!
I remember going to the Breastfeeding Centre at King Edward Hospital with my sister. She was my moral support for getting out of the house with a screaming baby in tow. The appointment was going well and the nice lactation consultant lady was answering all my questions, then she said how about we check your supply. She hooked me up to a heavy duty electric pump with TWO PUMPS - oh the indignity of it all! Luckily by this time I had no shame in getting my boobs out, although I am not sure how my dear sister kept a straight face... maybe she knew I would burst into tears if even a smirk threatened to make an appearance on her face. Milk supply - excellent!
Luckily at the time I also had an A-M-A-Z-I-N-G clinic health nurse (Michelle). We had a really nice connection and I appreciated what she had to say about babies and life. She never made me feel like a nitwit, as per many horror stories I have heard from friends about their clinic nurses. I remember at one appointment asking, what happens when my boobs run out of milk and the baby is still hungry? She calmly informed me that the humble breast makes milk instantaneously as required, in fact she explained the whole mechanism i.e. a nifty hormone called Prolactin causes your alveoli to take nutrients from your blood supply and turn them into breast milk! So I never feared that my munchkin wasn't getting enough milk ever again. She was just a whingey, fussy baby - who loved the sound of her own racket, that and in hindsight, she may have been suffering silent reflux for the first six months of her life.
My daughter and I finally managed to get it together and work more as a team after an incredibly trying first six months. I actually started to look forward to night feeds, because it was quiet and I had no pressure to do anything else, like washing anything. I could just cradle my beautiful baby girl, watch her gorgeous face and enjoy her snuggly warmth (unless it was the middle of summer of course!).
As the two year mark approached, I started to feel quite apprehensive about giving up breastfeeding. I had worked myself down to one feed during the last year, but I wasn't sure how I was going to go or more importantly, how Chynna was going to go with no boobie to settle her at night. Of course, she was fine and never looked back. While I was a little sad, I knew I would breastfeed again. I was also really glad to get my boobs back to myself and the cessation of a feed before bedtime was a big plus because it certainly made that whole routine shorter. I could put my feet up sooner.
A few years later my bouncing baby boy was extracted from my belly. From the get-go he was a joy - placid, relaxed and easy to feed. For his first feed, I lifted him to my breast and forgot he was a newborn and not a two year old. The nurse gently reminded me about helping him latch on, but he did a pretty good job by himself. I got the hang of it again pretty quickly. In the hospital all types of different feeding positions were suggested, yet as before none of them felt comfortable to me. I had a single feeding position in my repertoire and that was the cradle hold.
Big problems began just days after Mr Sabin came home. He began writhing about in what appeared to be pain, he had an inconsolable cry and worst of all, started vomiting after just about every feed. Not little spit ups either - the entire contents of his stomach would often make an appearance all over me. Luckily it was just milk, but it was warm, gooey and sometimes smelly - so it was highly unpleasant and extremely anxiety inducing. He is the only person who has ever thrown up in my hair - because not even I have done that.
So began the search for what was wrong with my newest edition. I googled the problem and came up with reflux. Everyone I suggested this to, had a reason why it was not reflux. I thought I was going out of my brain - I no longer had my original clinic nurse and my relationship with my current nurse was a work in progress. She came to my house and watched me feed Sabin, suggesting he was a piggie or that I had too much milk and that I should phone the Breastfeeding Centre at King Edward Hospital. I did this and they again refuted my claims of reflux and recommended a different feeding position - keeping Sabin more upright and me more reclined to slow the flow of milk. It was awkward to say the least and did nothing to fix my problem.
I did learn, however that if a lactating mother has a diet too low in fat, her baby will not get enough nutrition from her milk. This set off alarm bells in my head. When I was feeding my baby girl, I was on my super low saturated fat MS diet. Maybe she was just continually hungry (and suffering from silent reflux). Hindsight is always twenty twenty! Luckily at this time, that diet was on hold and had been for some time.
Eventually I got an appointment with the paediatrician, who had seen Sabin while we were in hospital. I made sure I had a list of all reflux symptoms and all of Sabin's symptoms so I could argue my case as I expected to be rebuffed. He looked at me about to read my list and said I can tell you the symptoms of reflux because I have been treating it for twenty years, does your baby have this and he reeled off a list of symptoms. I felt so relieved that he had heard me when so many people hadn't because Sabin didn't do something associated with reflux or did something which meant he couldn't possibly have reflux. Anti-climatically what this all meant was that Sabin started Losec medication and kept breastfeeding. He continued to chuck his guts up on me for the next six months usually at the most inopportune time - like when I was all made up ready to hit the town, or getting Chynna ready for school in the morning or when a friend was holding him - ugly is all I can say! But he was no longer in pain.
We continued to feed during the night until about the third or fourth month when Sabin just stopped waking up. I also learned that he often wriggled in his bassinet from around 4.30am, but this did not mean he was hungry. Eventually we could no longer deal with all the snuffling and little kitten noises, so we moved him into his own room.
Before I knew it Sabin and I were down to one feed before bed. I think if he had of been the one to select which feed he kept between the morning and the night feed, he would have picked the morning. He just seemed to feed best in the morning, probably due to hunger, but his concentration span was also longer. I often found at night he would just have one side and then hurry off to see what his sister was doing, leaving me a bit lop-sided. I could have probably said good bye to feeding at this time... but I wasn't ready.
As it started to approach Sabin's second birthday, I started to think more about “quitting”. My husband was very keen for me to give it away. But I wasn't mentally up for the challenge. Stopping breastfeeding meant that Sabin was no longer my baby, but my growing toddler. And as Sabin was likely my last baby it also meant arrivederci breastfeeding for good. A chapter of my reproductive life - one where my body felt like it was doing what it was meant to be doing was coming to an end.
It took a good two and a half months of telling Sabin we were going to stop breastfeeding before it occurred. I told myself many times, that this is it - this is the last feed, but the following night I did it again. In the end my husband helped me along by putting Sabin to bed one night before I came home from yoga. He didn't miss me or my boobie juice and Ryan tells me that he counselled Sabin appropriately. So the next night he went without and it just went from there. There were no fireworks on that last night - or anything that made it memorable. I think in some small way I was looking for a perfect end to my breastfeeding era, but perfect is just that - perfect and unattainable.
So there you go - my ode to breastfeeding. I am very lucky I had such polite feeders - who didn't bite me - thanks my little darlings.
Lastly I want to add that I totally respect that many mothers choose formula over breast for lots of reasons. I could have easily been that mum myself. I am glad I didn't give up in those first six months - they were daunting and scary times, but the rewards for me in the end were far greater in so many millions of ways than those fleeting emotional states. If you are starting out on your breastfeeding journey, good luck and enjoy!
PS Sorry regulars (if I have any - how presumptuous of me) I have been writing my research proposal in my spare moments and have not dedicated much time to my blog... apologies I will try harder to do both.
Looking back I was probably one of the least likely people to breastfeed babies if it went on how comfortable I was with talking about my girlie bits. Yes those things are attached to my chest but it didn't mean I wanted to talk about them or have a baby latched onto one because that might mean I had to get it out in public.
I'm not sure what swayed me to breastfeed... I guess ultimately it was falling pregnant that changed my mind. Surely what came out of my body would be better for my future bub than what came out of a tin - no matter how scientifically it was put together. Not to mention much cheaper and a hell of a lot more convenient - at the very least I wouldn't have to get up in the middle of the night, flail around in the darkness trying to make a bottle of correct temperature formula and then later, much later try and fall back asleep.
I definitely read something put out by The World Health Organisation, that said, breastfeeding for the first two years of life was the best start for baby. A random blow-in clinic nurse later pointed out this may have applied more to third world mothers. However, I had already decided that this would be my aim - two years of breastfeeding. Given what I've already written you would think this was a highly ambitious plan wouldn't you? A big ask for someone who originally didn't think getting her boobs out in public, even with a real purpose was for her in any shape or form!
So my first teeny weeny baby was extracted from my belly 15 days overdue. It was kind of weird trying to get her to latch onto my boob - blind leading the blind really. I was super tired after the C-section and then the nurse put the baby in the bed with me and I didn't get a wink of sleep at all. Was this what the next 18 years was going to be like?
I remember while I was in the hospital, I was about to start breastfeeding when my lovely (I mean that sincerely) father-in-law walked in. He kinda just stood there... maybe he thought I was like every other breastfeeding mum, who was used to getting their boobies out in front of anyone... but so early in the peace, I just couldn't get the girls out in front of my husband's father. It just wasn't right!!
My little Chynna doll was trouble, trouble, trouble on the breastfeeding front. You would think that for something that needed breastmilk to survive that she would figure out pretty quickly what she needed to do to get the milk. But no, not my little Chynna. She squawked and screamed and moaned and fidgeted and woke up like a thousand times during the night. Being first time parents, my husband, Ryan and I assumed she wasn't getting enough milk and so the breastfeeding saga commenced. You might ask if I thought about bottle feeding my little darling and the answer is yes. We tried so hard, but she simply refused to take the bottle, no matter which teat or bottle shape we used or who fed her. She was hell bent on breastfeeding while lamenting it at the same time!
I remember going to the Breastfeeding Centre at King Edward Hospital with my sister. She was my moral support for getting out of the house with a screaming baby in tow. The appointment was going well and the nice lactation consultant lady was answering all my questions, then she said how about we check your supply. She hooked me up to a heavy duty electric pump with TWO PUMPS - oh the indignity of it all! Luckily by this time I had no shame in getting my boobs out, although I am not sure how my dear sister kept a straight face... maybe she knew I would burst into tears if even a smirk threatened to make an appearance on her face. Milk supply - excellent!
Luckily at the time I also had an A-M-A-Z-I-N-G clinic health nurse (Michelle). We had a really nice connection and I appreciated what she had to say about babies and life. She never made me feel like a nitwit, as per many horror stories I have heard from friends about their clinic nurses. I remember at one appointment asking, what happens when my boobs run out of milk and the baby is still hungry? She calmly informed me that the humble breast makes milk instantaneously as required, in fact she explained the whole mechanism i.e. a nifty hormone called Prolactin causes your alveoli to take nutrients from your blood supply and turn them into breast milk! So I never feared that my munchkin wasn't getting enough milk ever again. She was just a whingey, fussy baby - who loved the sound of her own racket, that and in hindsight, she may have been suffering silent reflux for the first six months of her life.
My daughter and I finally managed to get it together and work more as a team after an incredibly trying first six months. I actually started to look forward to night feeds, because it was quiet and I had no pressure to do anything else, like washing anything. I could just cradle my beautiful baby girl, watch her gorgeous face and enjoy her snuggly warmth (unless it was the middle of summer of course!).
As the two year mark approached, I started to feel quite apprehensive about giving up breastfeeding. I had worked myself down to one feed during the last year, but I wasn't sure how I was going to go or more importantly, how Chynna was going to go with no boobie to settle her at night. Of course, she was fine and never looked back. While I was a little sad, I knew I would breastfeed again. I was also really glad to get my boobs back to myself and the cessation of a feed before bedtime was a big plus because it certainly made that whole routine shorter. I could put my feet up sooner.
A few years later my bouncing baby boy was extracted from my belly. From the get-go he was a joy - placid, relaxed and easy to feed. For his first feed, I lifted him to my breast and forgot he was a newborn and not a two year old. The nurse gently reminded me about helping him latch on, but he did a pretty good job by himself. I got the hang of it again pretty quickly. In the hospital all types of different feeding positions were suggested, yet as before none of them felt comfortable to me. I had a single feeding position in my repertoire and that was the cradle hold.
Big problems began just days after Mr Sabin came home. He began writhing about in what appeared to be pain, he had an inconsolable cry and worst of all, started vomiting after just about every feed. Not little spit ups either - the entire contents of his stomach would often make an appearance all over me. Luckily it was just milk, but it was warm, gooey and sometimes smelly - so it was highly unpleasant and extremely anxiety inducing. He is the only person who has ever thrown up in my hair - because not even I have done that.
So began the search for what was wrong with my newest edition. I googled the problem and came up with reflux. Everyone I suggested this to, had a reason why it was not reflux. I thought I was going out of my brain - I no longer had my original clinic nurse and my relationship with my current nurse was a work in progress. She came to my house and watched me feed Sabin, suggesting he was a piggie or that I had too much milk and that I should phone the Breastfeeding Centre at King Edward Hospital. I did this and they again refuted my claims of reflux and recommended a different feeding position - keeping Sabin more upright and me more reclined to slow the flow of milk. It was awkward to say the least and did nothing to fix my problem.
I did learn, however that if a lactating mother has a diet too low in fat, her baby will not get enough nutrition from her milk. This set off alarm bells in my head. When I was feeding my baby girl, I was on my super low saturated fat MS diet. Maybe she was just continually hungry (and suffering from silent reflux). Hindsight is always twenty twenty! Luckily at this time, that diet was on hold and had been for some time.
Eventually I got an appointment with the paediatrician, who had seen Sabin while we were in hospital. I made sure I had a list of all reflux symptoms and all of Sabin's symptoms so I could argue my case as I expected to be rebuffed. He looked at me about to read my list and said I can tell you the symptoms of reflux because I have been treating it for twenty years, does your baby have this and he reeled off a list of symptoms. I felt so relieved that he had heard me when so many people hadn't because Sabin didn't do something associated with reflux or did something which meant he couldn't possibly have reflux. Anti-climatically what this all meant was that Sabin started Losec medication and kept breastfeeding. He continued to chuck his guts up on me for the next six months usually at the most inopportune time - like when I was all made up ready to hit the town, or getting Chynna ready for school in the morning or when a friend was holding him - ugly is all I can say! But he was no longer in pain.
We continued to feed during the night until about the third or fourth month when Sabin just stopped waking up. I also learned that he often wriggled in his bassinet from around 4.30am, but this did not mean he was hungry. Eventually we could no longer deal with all the snuffling and little kitten noises, so we moved him into his own room.
Before I knew it Sabin and I were down to one feed before bed. I think if he had of been the one to select which feed he kept between the morning and the night feed, he would have picked the morning. He just seemed to feed best in the morning, probably due to hunger, but his concentration span was also longer. I often found at night he would just have one side and then hurry off to see what his sister was doing, leaving me a bit lop-sided. I could have probably said good bye to feeding at this time... but I wasn't ready.
As it started to approach Sabin's second birthday, I started to think more about “quitting”. My husband was very keen for me to give it away. But I wasn't mentally up for the challenge. Stopping breastfeeding meant that Sabin was no longer my baby, but my growing toddler. And as Sabin was likely my last baby it also meant arrivederci breastfeeding for good. A chapter of my reproductive life - one where my body felt like it was doing what it was meant to be doing was coming to an end.
It took a good two and a half months of telling Sabin we were going to stop breastfeeding before it occurred. I told myself many times, that this is it - this is the last feed, but the following night I did it again. In the end my husband helped me along by putting Sabin to bed one night before I came home from yoga. He didn't miss me or my boobie juice and Ryan tells me that he counselled Sabin appropriately. So the next night he went without and it just went from there. There were no fireworks on that last night - or anything that made it memorable. I think in some small way I was looking for a perfect end to my breastfeeding era, but perfect is just that - perfect and unattainable.
So there you go - my ode to breastfeeding. I am very lucky I had such polite feeders - who didn't bite me - thanks my little darlings.
Lastly I want to add that I totally respect that many mothers choose formula over breast for lots of reasons. I could have easily been that mum myself. I am glad I didn't give up in those first six months - they were daunting and scary times, but the rewards for me in the end were far greater in so many millions of ways than those fleeting emotional states. If you are starting out on your breastfeeding journey, good luck and enjoy!
PS Sorry regulars (if I have any - how presumptuous of me) I have been writing my research proposal in my spare moments and have not dedicated much time to my blog... apologies I will try harder to do both.
Monday, January 9, 2012
MS Cognitive Issues and News Years Resolutions
During last year I attended a newly diagnosed session at the MS Society of WA. While I was not newly diagnosed (thank God and for an explanation perhaps look back at this post, http://lumpycustard101.blogspot.com/2011/02/newly-diagnosed-seminar.html) I was new to medication. Being the most conscientious note taking nerd that I know - I took notes and made sure to highlight the fact that the MSWA Occupational Therapy Department did cognitive testing. At the time and still to this day, my brain does not function the way it used to pre-MS. These cognitive issues are also post-babies, as I don't really remember having the cognitive slip-ups I do now back then pre-babies, which was about three year post MS diagnosis. Conundrum? Nope, not in my sometimes sketchy mind. MS equals cognitive dysfunction, especially since I've been getting regular uninterrupted sleep for a year and a half now and those pesky cognitive problems have not disappeared!
Hearing this piece of information about the Occupational Therapy Department piqued my interested. I was very keen to have some testing done just to prove to myself that I wasn't a complete imbecile (or suffering early onset Alzeheimers) since I was forgetting the simplest of and frequently used words, like, "Can you get the knives and thingos and set the table." Or the next day forgetting half of the movie I had just seen the night before, or perhaps not so easily following a convoluted movie plot. Or worse still, forgetting details of growing up that I previously prided myself on remembering and recalling. I told myself to remember this info because I couldn't use the service immediately as I was about to commence my most feared, fourth year statistics unit at university. I didn't dare undermine my confidence in my brain's ability anymore than was absolutley necessary.
Lets just clear up what cognition actually is shall we. “Cognition” refers to the mind’s ability to recognize, organize, store, and recall information. MS can impede the parts of the brain whose job it is to perform these tasks. Everyone naturally has different abilities or strengths and weaknesses in cognition, but changes in cognition, however mild, occur in 45 to 60 percent of people with MS. I have read estimates as high as 70 percent and occuring in up to 50 percent of recently diagnosed cases. However only 10 percent of people with MS can expect severe cognitive impairment. Most MS cognitive impairment is not progressive, so while it may feel like we MSers are losing our minds (like stacks of other people minus the MS) we are not and the impairment is usually limited to certain types of cognitive problems like a reduction in mental sharpness, multitasking, processing speed, problems solving and word finding etc. Currently there is no medication to assist specifically with cognitive impairment in MS, although there are some in the early research stages.
Do those statistics make me feel any better - knowing that so many of us with MS will suffer the same types of cognitive issues? Does it help knowing when I am out with a group of friends and I am doing the talking, but can't remember a word or punch line instantaneously that up to 70 percent of my fellow MSers may be in the same situation? Nope, no siree I still feel like a twat! And I still feel like this around my friends who know I have MS.
Anyhow when I finished that fourth year stats unit (and did stupidly well at), I called the MSWA Occupational Therapy Department to make an appointment to have some cognitive testing done. It was all really simple and straight forward... certainly nothing to loose any sleep over. The screening tool that was used was the Screening Evaluation for Cognition Impairment (SEFCI), which was designed specifically for peeps with MS. Within it's scope, memory, thinking speed, problem solving and word knowledge were tested. The SEFCI is a standardised test and has a high degree of accuracy in predicting the likelihood of cognitive change.
My results were all rather positive and did not suggest any significant change in my cognitive functioning as a result of MS. As I was writing the above paragraph, I remembered what was said in a lecture about psychologocal testing (a unit I completed about a year ago) which was that I would no longer be able to be psychologically tested because I would know what to expect. I did know what to expect and I knew the best ways to do some of the tests. Did this affect my results? Surely. But I will take the tact of the manager of Occupational Therapy, which is that, yes I am noticing changes in how I process and recall information, but that these changes are subtle and do not impact on my routine.
The manager highlighted that being hyper aware of every little thing I forget is not helpful and that everyone forgets things. During a conversation that is flowing rapidly along I wouldn't notice someone forgetting a word or two - in fact I can't recall a conversation where someone else forgot a word. Surprise surprise, I can remember me doing it though! She also notes that being tense and stressed can have a negative impact on cognitive functioning, ie being worried about my ability to perform in a conversation.
As I have aspirations of being a psychologist I asked the manager what my prospects would be considering I will need to keep up with a clients conversation. It just so happened that a neuropsychologist was visiting MSWA and my results were discussed. The neuropsychologist emphasised recent research that suggests you can help yourself by adopting good "brain health" strategies early and these may help delay MS taking hold of cognitive functioning. There are five strategies and they are pretty generic, common sensey and are probably useful in delaying the normal aging process. Here they are:
1. Exercise: of the huffing and puffing variety that no one loves, to get extra oxygen into your brain.
2. Mental stimulation: do things that make you think - it could be work related or fun.
3. Immunotherapies (ok so perhaps not this one for delaying the aging process) continue using treatments as recommended by your neurologist.
4. Good nutrition: 5 serves of veggies and 2 serves of fruit.
5. Social supports: spend time building and nuturing relationships. Social participation is essential!
I would add another one to this - get on top of anxiety, stress and depression as these are also issues that can potentially impact on how you perform cognitively.
So wanna know what my New Year Resolution is? Stop being super aware of myself forgetting words, because probably no one else really cares except for me. I will try the laugh it off method if I am with friends who know I have MS and also the MS blame game. But if I am not with friends who know I have MS, I will employ good stress managing techniques, like breathing through anxiety or to just bluff my way through a conversation.... I guess it has worked until now. I will try to just let these episodes go, not replay them over in my mind a trillion times and most importantly I am not going to let these minor mishaps stop me from talking. I love talking!
My second (and last) New Years resolution is a whole lot less complicated... chewing my food!!
Thanks for reading!
Hearing this piece of information about the Occupational Therapy Department piqued my interested. I was very keen to have some testing done just to prove to myself that I wasn't a complete imbecile (or suffering early onset Alzeheimers) since I was forgetting the simplest of and frequently used words, like, "Can you get the knives and thingos and set the table." Or the next day forgetting half of the movie I had just seen the night before, or perhaps not so easily following a convoluted movie plot. Or worse still, forgetting details of growing up that I previously prided myself on remembering and recalling. I told myself to remember this info because I couldn't use the service immediately as I was about to commence my most feared, fourth year statistics unit at university. I didn't dare undermine my confidence in my brain's ability anymore than was absolutley necessary.
Lets just clear up what cognition actually is shall we. “Cognition” refers to the mind’s ability to recognize, organize, store, and recall information. MS can impede the parts of the brain whose job it is to perform these tasks. Everyone naturally has different abilities or strengths and weaknesses in cognition, but changes in cognition, however mild, occur in 45 to 60 percent of people with MS. I have read estimates as high as 70 percent and occuring in up to 50 percent of recently diagnosed cases. However only 10 percent of people with MS can expect severe cognitive impairment. Most MS cognitive impairment is not progressive, so while it may feel like we MSers are losing our minds (like stacks of other people minus the MS) we are not and the impairment is usually limited to certain types of cognitive problems like a reduction in mental sharpness, multitasking, processing speed, problems solving and word finding etc. Currently there is no medication to assist specifically with cognitive impairment in MS, although there are some in the early research stages.
Do those statistics make me feel any better - knowing that so many of us with MS will suffer the same types of cognitive issues? Does it help knowing when I am out with a group of friends and I am doing the talking, but can't remember a word or punch line instantaneously that up to 70 percent of my fellow MSers may be in the same situation? Nope, no siree I still feel like a twat! And I still feel like this around my friends who know I have MS.
Anyhow when I finished that fourth year stats unit (and did stupidly well at), I called the MSWA Occupational Therapy Department to make an appointment to have some cognitive testing done. It was all really simple and straight forward... certainly nothing to loose any sleep over. The screening tool that was used was the Screening Evaluation for Cognition Impairment (SEFCI), which was designed specifically for peeps with MS. Within it's scope, memory, thinking speed, problem solving and word knowledge were tested. The SEFCI is a standardised test and has a high degree of accuracy in predicting the likelihood of cognitive change.
My results were all rather positive and did not suggest any significant change in my cognitive functioning as a result of MS. As I was writing the above paragraph, I remembered what was said in a lecture about psychologocal testing (a unit I completed about a year ago) which was that I would no longer be able to be psychologically tested because I would know what to expect. I did know what to expect and I knew the best ways to do some of the tests. Did this affect my results? Surely. But I will take the tact of the manager of Occupational Therapy, which is that, yes I am noticing changes in how I process and recall information, but that these changes are subtle and do not impact on my routine.
The manager highlighted that being hyper aware of every little thing I forget is not helpful and that everyone forgets things. During a conversation that is flowing rapidly along I wouldn't notice someone forgetting a word or two - in fact I can't recall a conversation where someone else forgot a word. Surprise surprise, I can remember me doing it though! She also notes that being tense and stressed can have a negative impact on cognitive functioning, ie being worried about my ability to perform in a conversation.
As I have aspirations of being a psychologist I asked the manager what my prospects would be considering I will need to keep up with a clients conversation. It just so happened that a neuropsychologist was visiting MSWA and my results were discussed. The neuropsychologist emphasised recent research that suggests you can help yourself by adopting good "brain health" strategies early and these may help delay MS taking hold of cognitive functioning. There are five strategies and they are pretty generic, common sensey and are probably useful in delaying the normal aging process. Here they are:
1. Exercise: of the huffing and puffing variety that no one loves, to get extra oxygen into your brain.
2. Mental stimulation: do things that make you think - it could be work related or fun.
3. Immunotherapies (ok so perhaps not this one for delaying the aging process) continue using treatments as recommended by your neurologist.
4. Good nutrition: 5 serves of veggies and 2 serves of fruit.
5. Social supports: spend time building and nuturing relationships. Social participation is essential!
I would add another one to this - get on top of anxiety, stress and depression as these are also issues that can potentially impact on how you perform cognitively.
So wanna know what my New Year Resolution is? Stop being super aware of myself forgetting words, because probably no one else really cares except for me. I will try the laugh it off method if I am with friends who know I have MS and also the MS blame game. But if I am not with friends who know I have MS, I will employ good stress managing techniques, like breathing through anxiety or to just bluff my way through a conversation.... I guess it has worked until now. I will try to just let these episodes go, not replay them over in my mind a trillion times and most importantly I am not going to let these minor mishaps stop me from talking. I love talking!
My second (and last) New Years resolution is a whole lot less complicated... chewing my food!!
Thanks for reading!
Wednesday, December 21, 2011
One Year of Copaxone
Wow, can you believe it? I hardly can. I have now injected myself with Mr C 370 times... For those of you scratching your head as to what this milestone is, I have been injecting Copaxone for Multiple Sclerosis for a whole year.
I can remember being utterly devastated at the news given to me by my neurologist just over a year ago now. I had come to accept I had MS, but mostly, from day to day, I could ignore it and get on with my life without anyone really needing to know about it. I only had sensory symptoms - weird tingling, buzzing and sometimes a first thing in the morning Lhermitte's sign. Most of these symptoms I put down to other things. Once I was chatting to my husband about the tingling you get after exercise and he looked at me funny and said, well that must be an MS thing. So, as you can imagine being told by my neuro that I had some activity going on in my brain (I'm pretty sure he didn't mean thinking!) and that I needed to start medication to calm the inflammation down, spelt out the worst impending doom in my book.
I was point blank, scared out of my wits. I think while I managed to keep a lovely calm exterior, internally I was preparing for the worst. I read up about Mr C on the net and found a multitude of nasty symptoms to email my neuro about... he replied calmly and sensibly (of course)... but how could all those opinions be wrong? Yet I knew I had a responsibility to my young family to stay as healthy as possible for as long as possible, thus I knew I would start Mr C and persevere with it.
I remember C day clearly, as if it was yesterday in fact. My family were all at home and we ever so patiently waited for the MS nurse from MSWA to arrive. She came in a little white car, was really tall and introduced herself as Ann. She spent a very long time talking through our concerns in a laconic, yet laid back style. She knew what she was talking about and this put my mind at ease. But then it came time for her to give me my first injection. It seemed to me like she dawdled, dragging it out, when all I wanted her to do was press the auto inject and fire Mr C through my skin and into my fat cells. I guess time slows when you are experiencing extreme anxiety. When she finally did press the button, what I felt was nothing like a bee sting, which would have required that I jump up and down and swear quite a lot. About a minute later a slow burn commenced and a red spot developed. The red spot grew and finally developed into a welt.
In the beginning, my injections didn’t tickle, but were nothing like a bee sting. I rotated my injection sites as suggested and would do my stomach, hips and thighs. I was advised not to do the backs of my arms, firstly because how can you inject the back of your upper arms and secondly because I like to wear sleeveless tops. The injection sites usually turned into big welts, which lasted a few days. Sometimes, a few days after the welts disappeared the site would begin to itch. But you know what, I don't get the welts now, the injections don't sting at all - in fact sometimes the only way I know I have given myself the injection is to check the syringe is empty and unless I am doing a completely new injection site, I don't itch either. I have given up doing my thighs, because I don't want to risk the dreaded lipoatrophy or pots holes on my thighs because I like to wear bathers/swimmers/a swim suit/cossie/togs in summer and it winter too, for the kids swimming lessons. I try my hardest to rotate injection sites on my stomach and hips, but I'm a bit too lazy to do the whole diagram thing and mark the exact location of the injection to make sure I don't hit that spot again in four days’ time. I also know that when I keep a list about certain things I will become obsessive about them... and I don't need that crazy business going on right now.
So since being on Mr C I have had one full MRI of my spinal cord and brain. My neuro was unconcerned by a small lesion which was not active and did not request that I come in and see him. I took that to mean Mr C was doing his job and would remain in his fulltime permanent position as a decoy for my immune system. I have another MRI booked for June/July. I'm not concerned as currently I have no new symptoms.
So what have I learned in this year of daily injections? I have learned that there are a lot of websites and social media pages out there that obviously want to help people with MS, but do no more than breed fear through inaccurate information and personal opinion. I have learnt that many people with MS do not know much about their disease and therefore are frightened by going to these websites and pages. I have learnt that many people on such websites and social media pages will only talk about their WORST experiences with MS and MS medication. I have learnt that the average Jo or Joe does not necessarily know the things that I have learnt this last year - that personal experience and opinion does not equal fact about MS.
If you are reading this and you have MS, I beg you to go to highly regarded and well known MS websites where facts about Multiple Sclerosis are recorded and read up on them. Your homework is to get to know your disease. If you are feeling mentally strong enough, then brave the websites and social media pages where fellow MS-ers write about their personal experiences and voice their opinions. But if you are feeling fragile then I would suggest that these opinions and personal experiences are not a good place to be. After all, your personal experience will be different to everyone else - because you are different. You are not going to know how something will affect you until you have experienced it yourself!
Shall I get off my soapbox now?
I just think about all the worry and concern I spent pondering what might happen when I started Mr C, such as gaining weight and know now that I could have saved myself a whole lot of mental anguish. I bet many of those people who put on weight while taking Mr C, just started eating more or exercising less but attributed this weight gain to Mr C... you just don't know other peoples circumstances. However I know myself pretty well and I will continue visiting these web pages that cause me mental anguish, but not because of the problems that Mr C could cause me gleaned from other peoples experiences. But rather due to ill-informed people with MS teaching and informing ill-informed people with MS.
Anyways my lovelies, yay me for injecting myself for 12 months!
Merry Christmas, have a safe and prosperous new year and thanks for reading.
I can remember being utterly devastated at the news given to me by my neurologist just over a year ago now. I had come to accept I had MS, but mostly, from day to day, I could ignore it and get on with my life without anyone really needing to know about it. I only had sensory symptoms - weird tingling, buzzing and sometimes a first thing in the morning Lhermitte's sign. Most of these symptoms I put down to other things. Once I was chatting to my husband about the tingling you get after exercise and he looked at me funny and said, well that must be an MS thing. So, as you can imagine being told by my neuro that I had some activity going on in my brain (I'm pretty sure he didn't mean thinking!) and that I needed to start medication to calm the inflammation down, spelt out the worst impending doom in my book.
I was point blank, scared out of my wits. I think while I managed to keep a lovely calm exterior, internally I was preparing for the worst. I read up about Mr C on the net and found a multitude of nasty symptoms to email my neuro about... he replied calmly and sensibly (of course)... but how could all those opinions be wrong? Yet I knew I had a responsibility to my young family to stay as healthy as possible for as long as possible, thus I knew I would start Mr C and persevere with it.
I remember C day clearly, as if it was yesterday in fact. My family were all at home and we ever so patiently waited for the MS nurse from MSWA to arrive. She came in a little white car, was really tall and introduced herself as Ann. She spent a very long time talking through our concerns in a laconic, yet laid back style. She knew what she was talking about and this put my mind at ease. But then it came time for her to give me my first injection. It seemed to me like she dawdled, dragging it out, when all I wanted her to do was press the auto inject and fire Mr C through my skin and into my fat cells. I guess time slows when you are experiencing extreme anxiety. When she finally did press the button, what I felt was nothing like a bee sting, which would have required that I jump up and down and swear quite a lot. About a minute later a slow burn commenced and a red spot developed. The red spot grew and finally developed into a welt.
In the beginning, my injections didn’t tickle, but were nothing like a bee sting. I rotated my injection sites as suggested and would do my stomach, hips and thighs. I was advised not to do the backs of my arms, firstly because how can you inject the back of your upper arms and secondly because I like to wear sleeveless tops. The injection sites usually turned into big welts, which lasted a few days. Sometimes, a few days after the welts disappeared the site would begin to itch. But you know what, I don't get the welts now, the injections don't sting at all - in fact sometimes the only way I know I have given myself the injection is to check the syringe is empty and unless I am doing a completely new injection site, I don't itch either. I have given up doing my thighs, because I don't want to risk the dreaded lipoatrophy or pots holes on my thighs because I like to wear bathers/swimmers/a swim suit/cossie/togs in summer and it winter too, for the kids swimming lessons. I try my hardest to rotate injection sites on my stomach and hips, but I'm a bit too lazy to do the whole diagram thing and mark the exact location of the injection to make sure I don't hit that spot again in four days’ time. I also know that when I keep a list about certain things I will become obsessive about them... and I don't need that crazy business going on right now.
So since being on Mr C I have had one full MRI of my spinal cord and brain. My neuro was unconcerned by a small lesion which was not active and did not request that I come in and see him. I took that to mean Mr C was doing his job and would remain in his fulltime permanent position as a decoy for my immune system. I have another MRI booked for June/July. I'm not concerned as currently I have no new symptoms.
So what have I learned in this year of daily injections? I have learned that there are a lot of websites and social media pages out there that obviously want to help people with MS, but do no more than breed fear through inaccurate information and personal opinion. I have learnt that many people with MS do not know much about their disease and therefore are frightened by going to these websites and pages. I have learnt that many people on such websites and social media pages will only talk about their WORST experiences with MS and MS medication. I have learnt that the average Jo or Joe does not necessarily know the things that I have learnt this last year - that personal experience and opinion does not equal fact about MS.
If you are reading this and you have MS, I beg you to go to highly regarded and well known MS websites where facts about Multiple Sclerosis are recorded and read up on them. Your homework is to get to know your disease. If you are feeling mentally strong enough, then brave the websites and social media pages where fellow MS-ers write about their personal experiences and voice their opinions. But if you are feeling fragile then I would suggest that these opinions and personal experiences are not a good place to be. After all, your personal experience will be different to everyone else - because you are different. You are not going to know how something will affect you until you have experienced it yourself!
Shall I get off my soapbox now?
I just think about all the worry and concern I spent pondering what might happen when I started Mr C, such as gaining weight and know now that I could have saved myself a whole lot of mental anguish. I bet many of those people who put on weight while taking Mr C, just started eating more or exercising less but attributed this weight gain to Mr C... you just don't know other peoples circumstances. However I know myself pretty well and I will continue visiting these web pages that cause me mental anguish, but not because of the problems that Mr C could cause me gleaned from other peoples experiences. But rather due to ill-informed people with MS teaching and informing ill-informed people with MS.
Anyways my lovelies, yay me for injecting myself for 12 months!
Merry Christmas, have a safe and prosperous new year and thanks for reading.
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