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Do you ever sit back and wonder why you and the people you love? Why in this life do you and those you care about have to deal with so much and yet someone else seemingly gets to live the charmed life? I know that everything is relative, no matter how bad I feel things are I also know somewhere for someone else life is dealing them a worse hand, although this knowledge doesn’t make the situation any better.

We are a family of 5, myself, my husband and my three daughters, together we make a fearsome force to contend with. We are close, honest with each other, loyal and supportive, for this I count my blessings each and every day. However, I wonder if we would be this close if our lives had run a different path? Has the adversity brought us closer together, strengthened the bond between us, making us close ranks and being fiercely protective of each other in order to survive? I suppose for us this is true, tragically though for others it can cause cracks to form and division between the family instead. So if there is a silver lining to all this, for me it would be having this amazing closeness with my husband and daughters.

I wonder if we have some genetic link to the conditions we face and if so was there anything we could have done sooner? I have questions with no answers, that bothers me because I like things to be tied up and explained. We have questioned family and not turned up any answers, so perhaps the issues started with us? Perhaps the mix of mine and Dave’s genes created the fertile ground for these conditions to bloom? We have been told there was nothing we could have done to prevent it occurring, but it doesn’t stop you wondering if there was, somehow, in some way, something you could have done.

So what am I talking about? Illnesses, affecting both mental and physical health. Between the 5 of us we have;

Am I wrong in feeling that this is an awful lot for a family of 5 to have?

Can there be some possible link to why we are have these illnesses to deal with?

I wonder about this all the time, it whirls around my head  constantly, seriously all we want is some normality, some stability and freedom to be able to make plans and know we can keep them. Currently we can never, ever, be certain of being able to honour our commitments and often have to decline and step back from social gatherings or events at the very last minute. Our life functions minute by minute, we try to cautiously look further but not too often.

Hard as it is, when asked … How are you? How is the family? Inevitably I say fine, yep, all good thanks. Why on earth say that? It’s because it’s easier, easier than explaining it all and potentially allowing yourself to be vulnerable. Instead you straighten up and lie.

The hardest part is we all look absolutely fine on the outside, suffering from invisible mental and physical health illnesses makes it doubly hard for people to understand. Outside in all looks normal. Inside though we are tender, vulnerable, suffering and wanting support, understanding, compassion and help. I am horribly overweight due to my illness along with menopause, I can’t exercise as such, about 10 minutes on the Wii Fit U is about all I can manage of gentle exercises. I have re-joined slimming world, the consultant there knows my issues and limitations, she offers understanding and support and helpful advice on how to tweak my  eating habits to allow the high fibre, low fat, high protein, low sugar eating plan that I need. I nearly fell over in shock when I saw the scales register a weight I haven’t been since heavily pregnant and eating for two. I don’t weigh myself at home and will only be weighed when go to the club ~ however, I am not going to judge myself on my weight or any loss of it. Instead I will fill in my diet/symptom journal and judge on symptoms experienced, any relief found, any food triggers noticed. I am not giving myself targets of what to lose, instead solely focusing on health, change and progress in whatever form that takes.

This is my diary, it logs bowel movements, symptoms, triggers, food consumed, drink consumed etc ~ everything you need to know when reviewing flares to pinpoint probable cause.

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Perhaps all I really want to say about all this is to never, ever, judge someone by their outward appearance. No-one can tell  outwardly what lies beneath with these kind of conditions. I feel I need to talk about them, bring them out in the open to somehow connect with others in the same boat and raise awareness among those who don’t know.

If you look at this photo, could you tell who has what condition from the list I gave? To all looking on we are a healthy normal family. Looks can be deceiving, smiles can cover up the suffering beneath. We are strong together as a unit, we understand each other and our issues, it’s very difficult to explain to others how to help or what is going on with us because it’s complicated. Our symptoms are fluid, changing all the time ~ some days we could be bedridden others with far more energy. Mental health peaks and troughs ride alongside physical issues, how do you explain when every hour of every day is different?

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This is us, we all have invisible illnesses but hold strong together as a family

Always ask for help and don’t give up ~ we fought medical health professionals for years trying to get answers, and although it has taken years, too many, we now have the diagnosis’s we needed and are now working towards accessing treatments and support. If you feel too vulnerable to fight for yourself then try and find a friend or family member to be your advocate and fight on your behalf. Importantly though – don’t give up, you are not alone!

You are loved (Don’t give up)
lyrics by Thomas Salter

Don’t give up
It’s just the weight of the world
When your heart’s heavy
I…I will lift it for you

Don’t give up
Because you want to be heard
If silence keeps you
I…I will break it for you

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don’t give up
Because you are loved

Don’t give up
It’s just the hurt that you hide
When you’re lost inside
I…I will be there to find you

Don’t give up
Because you want to burn bright
If darkness blinds you
I…I will shine to guide you

Everybody wants to be understood
Well I can hear you
Everybody wants to be loved
Don’t give up
Because you are loved

You are loved
Don’t give up
It’s just the weight of the world
Don’t give up
Every one needs to be heard
You are loved

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 x~X~x