Monday, 17 September 2018

As time goes on, I often wonder how life will be with Fibro and ageing.  There are days when I imagine that I won't be able to cope with the ailments that one can get as one ages, on top of Fibro.  It kind of does my head in a bit because it is a worry.  Then I remember if one is being mindful, one wouldn't worry about the future so much.  

On the days I struggle with more pain than usual, I find myself thinking I won't be able to be the grandma I could be without Fibro.  Lord knows I hope it isn't too soon, but at the same time I think... I hope it is soon, because if I am only going to get worse, it is better off to happen in the near future while I am still able to be a grandma that can walk to the park and push the littlies on the swing, and actually have a bit of fun...  

On the other hand, going forward maybe there will be some more knowledge surrounding this mysterious disorder.  Maybe there will be something that brings the relief we need to get through with long spells of painlessness.  We can only hope.  

The best we can do is get through each day, and remind ourselves that we aren't alone in this.  There are so many sufferers of all sorts of chronic pain, and Fibro is just one of them.  I find thinking about the best things in my life get me through the day, the moments shared with my children, the time we spend together at the dinner table, the times that I am so preoccupied my pain is in the background and not the forefront of my day.  If we can count those small special moments throughout the day, surely living in the moment and feeling those joyous moments will make each day a better day with Fibro.  

It's worth a try!!

Wednesday, 4 July 2018

Everyone's been sick with a flu, a cold, or a virus, and I can't complain because I haven't been.  I said the other day to my hubby, 'I'd rather be sick with a flu or cold or virus once or twice a year than have Fibro all year round'... He's in the thick of it and said 'I'd swap you right now'... (he really didn't mean it!!!)...

It got me to thinking that we all have good and bad things in our lives.  Some things I wouldn't ever swap, and I guess in a way I am thankful it is me and not my children that have Fibro or chronic pain.  I couldn't bear to see them struggle with the inconsistencies (the flares) and the unknown elements of this syndrome.  I am thankful that they are healthy and get the odd flu or virus than have to deal with wondering what one day to the next will be like.  It is a finicky business this Fibro!!

It is horrible to have family members unwell.  I rarely get sick, which is such a funny thing, I am actually really healthy, it makes me laugh.  Some may say it is a tiny blessing, something to be thankful for not having to deal with common every day sickness on top of Fibro.  I guess I am thankful, and I guess that I wouldn't change my situation for the health of someone else.  Healthy as a horse except I have Fibro (that's quite the statement!).

We all know that we have to count the good days as blessings, and I continue to do that.  What we have to do to get through, is look at in a different light, look at from all angles, look at it from the bright side of life.  I am thankful it is me and not the ones I love the most in this world!!  

Keep well, fellow Fibro sufferers, keep your chin up, keep thinking positive, and always look on the bright side of life :)

Saturday, 2 June 2018

The intensity of pain during menstruation can be insane!!!  Such as the feeling of hot pokers being jammed in to your low back.  Just the visual that comment creates can certainly sum up the reality of what if feels like!  Any one with me?  

I know that I've always had a very painful menstruation, however I knew many people growing up who did but I didn't actually realise until these later years that mine or anyone with fibro, does not have just 'the regular dysmenorrhoea', it is full force, brutal and 100x worse than the average... why is this?  I have looked into it and all I can see or read or take note of is that it 'just is'... because we feel pain on a higher level, but I actually feel like my spine flairs, and the area around my low back seems to be screaming out in pain.  The good news is that Tramadol does seem to take the edge off, a heat pad seems to make it feel slightly better, anti-inflammatories on top of this may help improve it but overall, it just hurts like F--K!!!!!!

So I guess it means that I wander about in a zombie like state for 4 or 5 days... hurting when I bend, hurting when I lay in bed at night, hurting when I'm smiling, hurting when I'm just living my life... something I guess those with FMS just 'do', on a regular basis.  God, we are a special group of people aren't we?  I think we are.  I think you are!  Brave as they come, to face each day, week, month and years with a brave face, and a fighting attitude... how great we are!  Keep your chin up, remember there are others out there fighting the same battle and we aren't alone in this big bad fibro world.

Go well.

Monday, 9 April 2018

Everyone knows the saying 'knock on wood', well I should've done that after my last blog, bleating on about how great I was feeling... isn't it just awful luck to feel so great and then WHAM... you get a taste of reality and how bad it feels when you have a flare!!  

The worst bit about a flare has to be the thoughts that swirl about in your head, and you know it isn't 'really' how you feel... but the pain is making the devil come out.  Am I the only one who feels like this?  I hope not.  In a way I imagine this must be how people feel when they come to the end of a painful journey with some serious illnesses out there, when they come to the end and it is finally over.  In my head I think at least it is over... isn't that awful?  Especially since I have lost both parents to cancer, at relatively young ages (54 and 64), I feel horrible when I have these thoughts... but when I flare badly I think about the pain and wanting it to end, but I know that I will go through this again and again... and that is WHY I have the horrible thoughts, it isn't just once in my lifetime, it is many many times in my lifetime that I have to lay there and feel the pain that freezes me in one position, because I think I'll just keep still and pray it away... if I move, surely it will only get worse...  then of course I feel guilty because I am lucky to be here.  I am mindful that I am lucky to be living and breathing and sharing this world with other lucky people.

Sometimes when I am in this pain I even forget to use the techniques I know work so well, to help me through it.  For example breathing techniques and mindfulness... but who wants to, or even remembers to do this at 3am in the morning?  or 4, or 5 for that matter!!  I sure as heck don't... all I can think about is how much it hurts.  I also wonder for how long?  Is this as bad as last time?  Is it worse?  When will it end?  I actually do analyse what kind of pain it is this time... it's mostly just awful.  

I hope one day there is a known cause of Fibro.  I hope that one day someone tells us why we have it?  How we got it?  Why it is triggered?  How come it can come and go?  I know there are lots of guesses and suggestions and some studies, but they are all just general ideas, no hard core facts that we can all say 'yep' to, that makes sense, and 'yep' I can see how that works and why I am the recipient of this horrible syndrome.  Or why anyone is.  If 2-4% of the US population suffers, which is equal to millions, how it hasn't intrigued more scientists on the grand scale?!  It is such a highly confusing and understudied syndrome, which in some cases I believe can be super confusing to specialists even, never mind just regular every day people who have no idea, and have only heard bits and pieces over the years. 

I probably should stop now while I am ahead... I get worked up about it and can waffle on... but I have to say I am not feeling sorry for myself... I feel sorry for those who have worse flare ups, are bed bound, or house bound, and in worse pain daily.  I know there are many, so I still thank my lucky stars I am not worse off.  I thank my lucky stars I am here on this planet, alive and breathing and I remind myself daily that's special in itself, even if I have pain that makes me want to be free of pain forever and finally... I would prefer to have those moments alive and well... alive!!!  

Remember that in the end positivity will see you through, sharing your story will help, knowing other people are in the same boat, and we aren't alone in this.  Also remember that flare ups do happen, and one day hopefully we can laugh in the face of it!

Go well, rest when you can, eat well and keep smiling!!

Tuesday, 20 March 2018

It's March already!  I don't know where the time has gone...
Recently I have been very full-on, recovered from a minor operation which created what seemed to an incredible flare-up, short lived and then (knock on wood) a very long spate of WOW I am cured.  Yeeah right!!  But a very long spate of feeling pretty bloody fantastic.  So, I am not bragging but I am only wishing to give hope to those who think they won't have a stretch of goodness, with minimal pain.

Before my surgery my chronic pain was seriously chronic!  I mean every day I was sad and hurting, and hurting from the moment I woke up to the moment I laid down, with the distraction of work and motherhood in between to make me think maybe I wasn't hurting but Lord knows it didn't stop.  This went on for months, at least 3.  Strangely enough, the surgery I had was totally unrelated to my pain, or so I thought... my pain was in my low back persistently, my hips and my groin as well, and of course sometimes all over aching and the regular sore to touch spots.  Then as a by-product of this surgery, while the Dr's were doing their bits, they happened to remove scar tissue from my intestines, and from my spine.  I found this out by reading my discharge papers and had to google all the 'medical words' to even know what else they got up to in there.  I was super surprised they did this but in my search I found out that there is a common chronic pain caused by scar tissue on the spine!  What the heck, NO ONE EVER TOLD ME that this could be causing part of my discomfort or even suggested that it was a possibility.  Or why?!!  Im guessing it is from my c-section of my first child, or a back injury (disc related) (or maybe both)... but it was scar tissue none-the-less... I have yet to ask because I haven't had my post-op Dr appt yet, which so far I am surprised there hasn't even been a letter to advise 2 months later!  Oh the politics right?!!

Don't get me wrong, I'm not saying I'm cured, or that this was my overall problem, I know I have fibro and that I always will but who's to say this wasn't exacerbating the symptoms?!!  It's a real bummer I know, for all of us who have fibro, but it is a little slice of heaven in my eyes... something that has made me feel a heck of lot better, that I wasn't expecting and for awhile (still today) not feeling like I was in a 90 year old body, frail and delicate, achey and sore, struggling to move, and waiting for the next flare up!!  Long may it continue.

I guess it is the small things.  I'll take it!  Anything that increases my happy threshold, my healthy outlook, my future not so in pain self, I am all up for.

Go well fellow fibro'ees.  Rest well, eat healthy, enjoy any pain free moment you can!  

Wednesday, 17 January 2018

I know I have mentioned this in a previous blog, but it has come back to me after reading another Fibro blog recently and her words rung a bell within me... she, yet another person with Fibro, has also had an accident in the past resulting in whiplash.  I hunt high and low for information about Fibro, but again the percentage of articles and information is outstanding of those who have suffered with whiplash and now suffer with Fibro.

Have a read of this article I found, and prepare yourself... it is long and there are lots of big words but there are also lots of studies suggesting that whiplash has long lasting effects, long after the injury has even healed.  Once again I am not saying this is the answer, I am just saying it feels so consequential, and bloody interesting.

Food for thought:

There is plenty to read out there about Fibro and current studies, I just hope and pray that one day it will all be clear!  Just don't read the one from the Irish Neurosurgeon who says whiplash and chronic pain are all made up... that was a boring and laughable article!

Tuesday, 16 January 2018

Oh my gosh, oh my gosh, trolling through the internet and found this:

I would take the time to also read through Dr Liptan's studies as well.  Sounds like she has put her whole heart and soul into studying Fibro.

It says a lot about someone when they take the time to recommend a PAIN TOOLKIT (see link above) and I for one am off to purchase and follow these instructions.  Thanks Dr Liptan!!