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Writer's pictureHayley Black

Fibro & Me

I thought it would be good to share what Fibromyalgia means to me and our family. I don't want to focus too much on Fibro and health problems , they are however a huge part of me and why I started the Positive Baking company, so its important I feel to give a little bit of a background.


Fibromyalgia is a chronic autoimmune disease which causes widespread pain and fatigue answell as mental processing problems, Insomnia and IBS to name a few.

For me being a mum to a toddler Fibro just means my journey as a parent has an extra challenge that changes how we do things, has taught me patience with myself, and the art of self management. Fibro can mean lots of GP appointments, specialist visits and Hospital stays which is a down side, its cruel, It steals time away from your children, your partner and from doing the things you love. It is brutally restricting and is now recognised as a long term disability.

The one thing I realised at the beginning of my journey with Fibro and The Positive Baking Company is this - I may now have disabilities but I also have great abilities. Focusing on that allowed me to keep going and got me through those foggy days when I found myself consumed with pain and feeling miserable.

I'm not going to lie at the beginning of my diagnosis I wasn't positive at all, I was disheartened , I was angry, however I was also strangely relieved.

I was relieved because finally there was a reason, a reason for all my pain, a reason for why I didn't recover from an accident as quickly as we would of hoped. Fibro is often the result of Trauma, for me it was the result of slipping two disks into my spine one morning while yawning. Yep Yawning.

It all seems quite amusing now that I needed emergency surgery to stop me being paralysed and keep me breathing simply because I yawned too harshly, But this is me as we often say, and I never do things by halves!

The surgery was successful, I wasn't left with any permanent paralysis but as a family we were left shaken , the amazing thing about horrible things like this though is it brings people together, it makes people stronger, and teaches us to love a bit harder.

Ian took this photograph during a my hospital stay. for me this sums up our journey, Amelia became everyone's little hero in the midst of a huge mess, she kept us all going, her love and her cheeky smiles, and her reminder to me to keep fighting. Because yes I may have this totally rubbish medical situation going on , and there are days now when it gets me down but ultimately I am her mother, and she needs me.



The recovery was a slow one, I struggled to come to terms with what had happened mentally, I saw myself as a failure as a mother, Amelia was only 3 months old and I was just starting to come out of PND when this bizarre turn of events happened. Physically I was in pain and exhausted, my family, gps and I couldn't understand why I was experiencing so many complications afterwards until I got my diagnosis of Fibro and my medication was reviewed.

So you see actually receiving my Diagnosis wasn't such a bad thing, it gave us a reason, it gave us focus and a new challenge, as if being new parents wasn't hard enough!

Being a new parent with this diagnosis was difficult to get my head around, its taken me lots of counsilling , self care and learning to lean on people and overall its taken acceptance.

Acceptance that this is the way things are, its a bit rubbish but it can be managed. My first counselling session with my lovely Scottish guardian angel was enlightening, she told me and Ian something which will stick with us forever. It seems simple now but at the time it was revolutionary - you see what we had to do was simply start managing fibro instead of letting it managing us.

So that's what we started doing, we changed our attitudes towards what it was doing to us, we started focusing on what I can do rather than what I know cant do. Simply focusing on the positive rather than the negatives. Sounds easy, too easy.

Its not easy at all infact some days it seems near impossible, but I had to start somewhere and that is where the Positive Baking Company started.

Baking gave me a positive outlook, its something I can do within reason, I have to be carefull about how long I spend baking and how often I bake.

How many Spoons I use.

Many people with chronic illness use the term Spoonys, or running out of spoons.


Spoon Theory - The Spoon Theory is one way of describing how fibro patients are affected by their lack of energy. It talks about how we have far fewer 'spoonfuls' of energy than others, and how we have to be careful how we use them.

Spoony - someone who likes and prescribes to the 'Spoon Theory'. - http://www.fibronetwork.org.au


So I have to be careful that baking doesn't use up spoons I need to do basic tasks such as washing, and most importantly parenting. I have found however that a positive mental attitude can allow me a few extra spoons, baking and giving to people, sharing cake with others and the positive reaction I get is why I do this. If I wasn't able to share my passion with others then I simply wouldn't get the positivity back needed to put back into it.


So next time I make you a cake please don't worry about the stress it might put on me, focus instead on the extra spoons you are giving me by allowing me to share with others. Its a joy, its my passion, its my therapy.


Cake really is amazing isnt it.


x





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